This piece was written for Curiosity Friday and was shared September 6, 2024. Please enjoy this poetic stream of questions and insight in response to a system with the “answers” from Michele LaCourt, a fellow curious parent and advocate.

Investment – Expectations – Return

Focus on education, employment and independent living skills families are told. Plan for transition carefully. Practice social skills, job skills and coping skills our loved ones are sold.

Budgets, donations, programs, time, staff and hard work from our loved ones with disabilities.

How do we measure the return?

Has he/she secured a job?

Is the pay comparable to his/her non-disabled colleague?

Have genuine friendships been formed?

Are our loved ones visible in our community?

Investment – Expectations – Return.

Michele LaCourt

Michele can be found smiling in Massachusetts enjoying reading, long walks, kayaking, friends and family. 

“He got to just be himself, enjoying his bin of shakers, stomping around with his squeaky shoes, and making a few hand motions to his well-loved songs.”

Our family moved in the summer of 2023. 

Moving is hard for any family – hence why many studies list it as the number one most stressful life event. It is even harder when you have a child with special needs. Beyond the stress of packing, living in limbo, and then unpacking, we had to find new specialists, therapists, etc., and a new community. We tried to connect in various ways, but found it hard to plug-in.

We found Starfire shortly after moving, and we decided to host an event in May 2024 after we settled into our new home and had time to meet some people. Our little guy with a disability loves music, and so we decided to make it all about music!

After months of living in our new city, we were feeling starved for relationship after many failed attempts to connect. But we decided to keep on with our musical event. We passed out many invitations, both to acquaintances and near-strangers. We received a few RSVPs, and of those that did RSVP “yes”, one family backed out due to illness. That left us with three committed families.

 To some, that count may seem like a failure. But, it was those three families that made the event amazing, and, because of the event size, it allowed for more authentic connection. Everyone had an absolute blast, we connected with the parent attendees, and there was not one mention of our son’s Down syndrome diagnosis. He got to just be himself, enjoying his bin of shakers, stomping around with his squeaky shoes, and making a few hand motions to his well-loved songs.

Shortly after our event, we were invited by one of our attendees to a summer kick-off party. We were elated! 

“Our son just got to be a little toddler who loved music, and our musical event broke the ice that we could just not otherwise crack.”

Our Family Project was our icebreaker. We didn’t feel like we stuck out like a green thumb, our son just got to be a little toddler who loved music, and our musical event broke the ice that we could just not otherwise crack. We are still in contact with those three families, and we hope those relationships continue to blossom.

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Bridget:

Welcome. I'm Bridget with Starfire and I'm lucky enough to have Alyson and Mike here to talk with us today and talk about Starfire and your all's involvement and also what's kind of coming up in the future for you all in relationship to Starfire. So would you guys like to introduce yourself?

Alyson:

I am Alyson. I am a previous employee at Starfire. I was there for almost six years. That's where I met Mike and we started our relationship. At this current time I manage a facility in the sports world, so stay involved and very active.

Mike:

I'm Mike Holmes. I was a member, Starfire member. I was a member of, I do the same thing. I worked with Alyson with Cincy Swish, I was an ambassador.

Bridget:

So you all met through Starfire and then Mike, you talked about Cincy Swish because you guys did some things outside of you know what you were a part of was really like a day program kind of in the building, but you and Alyson kind of stepped outside of that, right. Beyond just what was happening in the program.

Alyson:

So Mike and I used to eat lunch almost every day together and Starfire used to do a path program. So Mike walked out of his path and said, do you know any basketball coaches? And I'm like, well, know quite a few, right? Run a basketball organization and I coach myself. So Mike's had quite a few opportunities, junior high, high school, young kids and also does an inclusive basketball team in the wintertime

Bridget:

As the coach of all those,

Alyson:

As the coach of all those either head or assistant.

Bridget:

Mike, what do you think all these years of coaching and all these different teams and ages, what has that meant to you?

Mike:

They need more discipline.

Bridget:

Oh, you think the players need more discipline?

Mike:

Yes.

Bridget:

Okay, but what about for you? How is your life, is it better because of all that coaching? In what ways?

Mike:

Yes. Both coaching, manager and player. Playing these years because Swish helped me a lot.

Bridget:

Yeah. How did it help you, you think? Swish.

Mike:

Okay, I'm not scared anymore. I'm not scared. And one year, I started coaching with Alyson. Fourth grade team, original fourth grade team, I'm sitting, sitting. That's why I'm sitting on chair because I said, “Oh what do I do?”

Alyson:

But you still have those relationships. Yeah,

Mike:

Relationships too.

Alyson:

Those young ladies are now fifth year seniors in college are getting ready to move on to see what's next in their life, but he still has those connections with them when they come back during the holidays or during different tournaments or different things that we see them in. We've been able to go to a couple games and watch them. A couple of them play in college and then the parent aspect. So to get everybody involved, he's been able to go to different restaurants or hang out and continue to grow those relationships. As we travel with Cincy Swish about once or twice a year, he's had the opportunity to also not just have to be with me, so not just the coaches traveling and whatever. I remember we went to Tennessee and a family took Mike to the mall and took Mike shopping and Mike came back with a whole new outfit.

Mike:

Yeah, true, just tell you, Bridge and everybody because I get built friendships and relationships, with families too from Swish and Mariemont. I coach Mariemont and John Well Parker, I talk to him every time. He was a director of Cincy Swiss back then.

Bridget:

And it all started with some lunches with Alyson  and then just asking the question, of do you know a basketball coach however long ago that was, and now here you are.

Alyson:

How long ago was that? Mike?

Mike:

13 years

Alyson:

Known each other for 13 years.

Mike:

Yes

Alyson:

But I think that's just it. Some of these longevity relationships that he's been able to build and still has. Probably talking to John and or myself almost every day.

Mike:

And Kevin Fry too sometimes.

Alyson:

Sometimes. Kevin Fry. He's been able to go to graduation parties and things with people that he's impacted their lives by being their coach.

Bridget:

I appreciate Alyson talked about longevity and I've kind of been thinking about that the longer you know people and that's something about relationships the longer they last, but there has to be some ability to change in those, right? Leaving space for Mike who you were 13 years ago and who you are now, or Alyson, me, any of us. I think those are the relationships that stay is when you kind of allow for that growth in that change and what your interest, where you start from and what you actually want to do. And I think that's kind of a testament to you all and how you guys have allowed for each other to change. As your interests change looking for those opportunities. I think Alyson, for her, she's been introducing you and Mike, you are so good at remembering people and also following up and not afraid to ask that question of, Hey, what about this? How could I do that?

Mike:

Bridge, I'll just tell you another one coaching wise, I'm head coach of GBBN Co-ED basketball. GBBN also.

Bridget:

Yeah. So even with your work, you were able to tie your basketball love into even the job that you had at GBBN. Yeah. Yeah. That was a great move.

Alyson:

I think of the connections he made at GBBN. So Mike did have a recent birthday party and the number of people that were even at his birthday party from after retiring from his place of business, his place of work for how long were you at GBBN?

Mike:

12 years now.

Bridget:

Yeah,

Mike:

Starfire got me a job there

Bridget:

That was a good thing too. You've done a lot.

Alyson:

Just trying to find those next steps and that's when we kind of circled back to Starfire and they asked us to do the collaboration project, the community project.

Bridget:

Yeah, that's what I was going to say. Because this is the first year we're stepping into the space of really trying to get the community to really kind of step up and into working together and we're calling them community projects, collaboration projects. So when I was given those, I did think of Alyson and you, Mike, as people that are already pretty well connected to each other and the ability to do a project. So I asked Alyson first I think to see if she'd be willing to help create something new that you guys would both enjoy doing and that would kind of keep all of this wonderful stuff and energy that you all already have going and how Starfire could still be a part of it. We don't want to cramp your style or get in the way of it, but if there was stuff that we could be doing to help support and keep that moving forward.

Alyson:

And I think the timing of it was impeccable. Right so Mike was in the process of retiring from GBBN and then I was stepping away from my spring /summer coaching and just trying to get Mike back involved. It's where we kind of realized how far can our connection go? So yes, we rely on each other to have each other's coaching staff, but where else can Mike coach, what else can Mike do? So we had brainstormed on the Swish end of it but hadn't come up with anything else yet of what was next, what could be Mike's main focus. Mike's all about being kind of the people person, the center of attention. And so when we were asked to do a collaboration night, we invited a lot of people.

Bridget:

So that was part of the idea is with the project, you get some funding, right? There's a little bit of money offered, but to do something, we were calling it a collaboration night to help people brainstorm what might be good ideas and you guys were willing to do that, have a night where people brainstorm and think through ideas. What did you think of that experience, Mike? That night that we kind of hosted?

Mike:

I like it. The tournament thing, next year. June, 1st of June is on Saturday. We’re prepared, me and Alyson we prepared a tournament and a Swish Hall of Fame and Swish reunion.

Bridget:

Yeah, that's sort of where the idea landed was let's use it and we'll all organize next year a reunion.

Alyson:

What about the people that were there?

Mike:

Them too.

Alyson:

Some new people that Mike had just met and we're getting to know Mike even more, some people that have been there and knew you a lot longer and then obviously Tim and Bridget that have known you. I think the longest out of all of us. Mike likes to plan. Mike likes to get out and again, more people in Mike's world and also he has connections with those families as we all do, but we don't get to see them or there's not really a space in the sports world at the younger grades to get everybody back together. And that's been Mike's big goal for probably the last three or four years and just trying to get other people's ideas on how this can all work. And something that we can continue to do year after year and kind of keep that stamp on it. So yeah, we landed with, we got to have wings though because Mike is all about wings.

Bridget:

So even from that night, were there things beyond the idea that came out of just spending that time together and talking to each other and having those conversations?

Alyson:

I'd say so, right?

Mike:

Yes.

Alyson:

You've gone and had wings with a few different people that he had never gone out and experienced. You went to a football game.

Mike:

I went to a football game, two of them. Turpin one and Mariemont one too.

Alyson:

There's plans to see a WWE event with another family. So, something that I am not really interested in, so it's great.

Mike:

She knows

Bridget:

You don’t need to be.

Alyson:

Exactly. And other people that had shared Mike's interest in boxing, because obviously we all have more than just one interest. Basketball is definitely what has kept Mike and I connected. But yeah, we also share different things and go different places.

Bridget:

Well that collaboration night just to kind of, that was sort of the idea is to talk to people to learn more. We know you love basketball, but what else do you love and what else did they love? And so from that, what I think I'm hearing, Mike, is that the people that were in the room with you that night sort of were like, oh, Mike likes wrestling. Let's keep that in mind and we'll invite you out there. The fact that invitations just to hang out without Alyson, not that Alyson couldn't be included, but the beauty that you have multiple people sending invites and spending time eating wings or going to football games is pretty, I love hearing that. That makes me pretty happy that that has happened even without your Swish project coming to life. I love that that's already happened and sort of shifted a few things with some people and that potential with them.

Alyson:

That's what it all comes down to. We all need a community around us and all of our schedules are busy. Everybody wants to be involved and Mike wants to continue to get out and be a part of the community and do different things and learn different things. So yeah, that's exactly it. And some of Mike’s other closest friends weren't even at this collaboration project and it's just those people are still inviting Mike to go fish or camping or whatever that might be, but it also fills up his calendar. What we all want to have different people that we go after to do different things as well and share those life experiences.

Mike:

I'll tell you.  That's why I love my life, that's why Starfire’s first one and that's why like Alyson say about me, that's why I get out.

Bridget:

Everybody wants to be out and have those people that you get to know and whether they're new friends or old friends, we need them all, right.

Alyson, I'm wondering, you sort of had the front row, Starfire employee seat, not that you were hired for programs, you were more in administration and management, but in many ways, I think you grasped what Starfire’s goals, looking at people's social lives and the inclusion that's possible out there. And Mike is here with you and you guys have spent a lot of time, but in many ways, you were the ultimate connector for a lot of people. But I don't know if you've got a perspective just to say from a person that what is this Starfire is asking me to do or be a part of? If you just have a perspective on that, as just a community person, what's the difference or why would you do it and why do you say yes?

Alyson:

What it comes down to is we all want that person to go to for something, right? Never just your spouse or your partner or your one best friend that you can go to everything in your life with or share that experience. We all have somebody, oh, I can run to this person and do this or do that. It's also when things get tough. I think this was very eye opening for a lot of us recently. Things get tough, whether you want to talk about Covid or needing some place for you to stay or even myself, something would happen. You want somebody that's going to be there for you. That community's got to be bigger than just one person. Who else can he call? Who else can he have conversations with? Who wants to have those conversations with him as well? Who else in the community or who else can fill up Mike's social bucket, social life in regards to that?

I think that was the thing that struck me the most. I am not a homebody by any means and at times you hear these stories of sitting around for 10, 12 hours and then going to sleep and then kind of doing the thing the next day. We're like the lives that they could live and the people that can be involved. Mike and I have had real conversations. Mike and I are best friends. Mike's almost like a brother to me at this point. So if I'm going to say it to my best friend regardless of disability or not, Mike's going to hear about it. Good, bad, or indifferent. Mike knew I was taking a new job when I came to this facility. Mike was one of the first ones to know that I wasn't going to coach. So what does that look like and where does that land him and what's next in life?

Mike and I did, we hit off right from the get go almost, right? And we talked about lunches and different things like that, but it obviously grew very fast, and I think lucky enough to be grounded enough to have Mike, but also wanting that for other people as well. And not just, family is wonderful, but as we all know, we like to get out and do other things. So I think watching those relationships grow amongst everybody was self-fulfilling. Everything that Starfire has done and continues to do to connect people. I do think unfortunately in the world we live in, people don't always think, “oh, I'm going to get wings, let me call Mike.” Now they do. And you just have to make that almost on the forefront of the world we live in and then,  “hey, I want to go have wings too, so let's go. Or whatever that event or job or social aspect could be.

Bridget:

Absolutely. I think everyone has so much potential, right. Alyson, you said, gosh, there are people that just sit at home nonstop all day long and they really just don't get that chance to really find themselves or to find their purpose or their people. And that's the hope is that we're helping people find more: more people, finding what their purpose, what they love, their drive. Like Mike, basketball, and business, you know that about yourself. Some people have a little more that they're confident in and others are like a blank slate in many ways with lots of potential. So I just appreciate thinking about that. If we find better ways to spend time and wings, wings together is a great way to spend time, right. There doesn't have to be these high stakes ideas, but just time to connect and chat. And where does that leave you?

Alyson:

That says it perfectly, right. You're going out to dinner. It's not hard to add an extra invite. It doesn't take that much time. It's a text or it's a call. It doesn't take much; you see something coming up and put it out there. And at this point Mike's pretty much on the calendar of different events of in regards to Swish than I am. So that is our longevity, and he keeps me on my toes, which is what I've come to expect as well. But I think it's those relationships and those things that really stand out.

Bridget:

Mike, how does that feel knowing you get invited sometimes and Alyson doesn't?

Mike:

I love it.

Bridget:

You love it?

Mike:

Yes. I'll just tell you, Bridge. Alyson doesn’t know that. I want to take over soon, Cincy Swish.

Bridget:

Of course Alyson might know that this was your ultimate plan.

Mike:

Yeah, my main goal to be a director of Cincy Swish. I want to be a coach there one day. Alyson was coach there, Kevin Fry was an assistant back then. That's why this helped me a lot as a coach. Did you see that movie, Hoosiers?

Bridget:

Yeah,

Mike:

I saw it 100 times. That's why I think of basketball and Cincy Swish and coaching wise. It has helped me a lot.

Bridget:

Yeah, all those experiences are going to help you, everything you've done. Yeah,

Mike:

I want to be the head coach of Cincy Swish too.

Alyson:

And what about those relationships? You still have Kevin Fry, but now you're the ambassador. So you go and coach how many do you coach? Three or four games a night with different teams and different players. So starting..

Mike:

High school and youth, young players, high schools, both.

Bridget:

And your title is ambassador coach? Is that what you said?

Mike:

Yes

Bridget:

That's pretty cool.

Mike:

I do all different grades, third to high school.

Bridget:

And that was something that you and Kevin sort of developed and figured out how to do?

Mike:

Kevin Fry. Alyson, she will tell you about that too.

Alyson:

So Mike got to, again, trying to expand that world. So him and Kevin coached for three or four years together and then Kevin stepped down. So it's always one of those things like who and how can we continue to grow? And I think that's one thing. We never want Mike to stop coaching. He loves it so much and sometimes it's not always easy to find that position or somebody else. So right now, he gets to taste a little bit of everybody's practice style. When coaches know he comes, He's prepared to do a drill or two and then he sits on different coaches' benches to learn those different things. But you and I came up with the ambassador role so that his relationships and his basketball coaching don't just stop with me.

That is the hardest thing with a lot of this, right? If I'm the first point of contact, but I'm also the last point of contact that doesn't help Mike when either my love for it or my stop or my work or whatever it is, gets in the way of something that's not fair to Mike. This was an easy fit. Mike is so good at meeting people and talking to people. He does this weekly. And the number of people that he is been able to touch and talk to compared to one team has definitely benefited him. He will tell you, I believe, that there are more that he likes to do over other teams, but there are players that we all like and there are coaching styles that we like and don't like, but we all have to learn from each other.

But the other part of this ambassador role too is because Swish does go year round, he's able to continue to go year round because not every basketball coach coaches for Swish year round because of high school or family or whatever else. So Mike's able to continue those relationships and meet all of our coaches instead of just being, as I put it, stuck with me.

Bridget:

I love it. He wouldn't be stuck with you. But it's a beautiful thing to have multiple people and touch points and supporters that you have and people that are thinking of you when there's an opportunity to be aware and to say, Hey, I know who could do this. Let's call Mike. Right? That's a great thing to have more people with you. You being known, right? Your name to come up and think of who would make sense in this or who could help us and to have you on their list of people to call.

Alyson:

You hit it right on the head. Mike is asked to come to some of these practices. They know he's going to run a defensive drill or they want to work on this or things like that. So more of, Cincy Swish coaches know if Mike's coming, they're going to get a little extra practice on this or focus on that and are asked. So those relationships can only grow in regards to that aspect as well.

Bridget:

Well I love it and I love that we've got plans coming up ahead, big plans for the Swish Reunion Hall of Fame.

Alyson:

Yeah, we started to sort of put a name to it. We haven't quite yet. It'll be a round, a small basketball tournament and then kind of a night to honor Mike and bring parents back and players back and tremendous work. And so that collaboration night was definitely, that was something for Mike to revisit new, old friends and people and who else these people know to connect with Mike as well.

Bridget:

Yeah, with wings to celebrate. I love that that's coming up. Big plans to hear about and to have to look forward to this year. I love it. I think that'll be great. Mike, do you have anything you want to add or say or?

Mike:

I love the game of basketball. Starfire helps me a lot. I was that person. That's why, love it. I love it.

Bridget:

I love it. You guys, thank you very much for sharing and talking with us today.

Alyson:

You're welcome. Thanks for having us.

Mike:

You’re welcome.

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Jan Goings:

I was thinking about the topic for today's podcast Different with Purpose, and I had some reflection about my experiences growing up as an African-American child and the legacy that grandparents and aunts and uncles passed down to me about strategies, ways to navigate community, family and culture and our family traditions placed in the African-American culture. And I'm very blessed for those experiences that I've been able to, and our family has been able to extend to other generations. And I'm very appreciative of family history, professional history, learnings that have shaped who I am. I've also been thinking about the experiences of families with children with disabilities or adults with disabilities and what stories and narrative get passed down through their family and community to help persons navigate some of the cultural difficulties and experiences that people with disabilities often face. And I think from what I understand and know is that those stories get locked into a family because of the cultural impositions of one of often about shame that's placed on families and people with disabilities or social isolation or disconnection or in that story of cants, wonts and nevers.

And so that rich history and tradition and learnings get lost. They're abruptly stopped and held within one family unit. And that's really a shame. And so, I do remain hopeful because I've seen that within our Starfire community, we have disrupted that cycle. We said there's more to learn, there's wisdom here. There's some teachings, there's some locking arms and arms that we can tell each other as families to families about having to navigate life experiences around disability. And that disability is just one identity, that it's way broader than anyone's identity just limited to disability. And so today we begin to hear from two amazing, strong, bold individuals who have said, I want to tell my story and I want others to learn from me and I want to learn from them. And so today we get to step into listening to these leaders about the family mentoring that happens within the Starfire Family Network. Take a listen and enjoy.

Hello, welcome to Different with Purpose. I am Jan Goings and I'm with Starfire Cincinnati, and I have the opportunity to chat with two of my colleagues, Carol Combs and Achsah Fitzhugh who are part of Starfire's amazing work with the Family Network. So let me take an opportunity to introduce Carol and Achsah. Carol serves as Starfire’s Family Network Coordinator, where she leads a team that consists entirely of parents of children with disabilities, engaging with families to host learning opportunities and different events which help families and individuals and people with disabilities and citizens to really grow and design stronger communities. Carol has degrees from Miami University and in 2018 was a recipient of the Young Pioneer Award from Butler County Board of Developmental Disabilities for her dedication to building more inclusive communities and knowing Carol, she is active in the city of Hamilton, creating more connections in her community and just really doing amazing work for her family and all of her connections. And welcome Carol.

Carol Combs:

Yeah, thanks for having me. Jan.

Jan Goings:

Achsah, Starfire family mentor who is a part of the Ohio Family Network. Achsah brings her wisdom to others in always meaningful and profound ways. Whenever I have been on a call with Achsah, I'm always just silenced by what she has to say and the wisdom that comes from her. So Achsah, it's really going to be a joy to hear from you today. She's a representative of the regional leadership team and Success by Six, which are sectors of United Way, and she is very active in our community as a member of Up Together, formerly known as the Family Independent Initiative. Achsah is also a parent voice in RCI Cope, which is through Cincinnati Children's Hospital, really an inclusion movement that is happening and a wonderful mother of three children and as she says, “constantly progressing herself through training and workshops to better our life experiences through joy.” I love that. Tell me what's on your heart and mind in bringing joy today?

Achsah Fitzhugh:

Well, I'm excited to be here to just bring people into the world that we have. That's just what we're doing. I'm so excited.

Jan Goings:

Awesome. Love it, Carol?

Carol Combs:

Well, if you all know me, you know that I love talking about this work. So what's bringing me joy today is being in the space with you all and being able to share some of the goodness that we're doing here within the Family Network.

Jan Goings:

That's a perfect lead in. Thank you. So I know Starfire has three pillars in terms of the work that we do, the Learning Network, the Community Building Network, and Carol as the coordinator for the Family Network. Can you kick us off and tell us a little bit more about that?

Carol Combs:

Yeah, so the Family Network is a group of families, not just here in Cincinnati, but really, we've grown to have families from across the United States that come together around these values of connection, contribution and community. What we're doing and what we do is we support families that have children with disabilities in the discovery of their gifts, how to share those freely within their community and really support them in building more connections, building an identity beyond disability, and bringing some healing to the culture that excludes people with disabilities. And we do this using a gifts forward approach. So really focusing on what's strong, not what's wrong.

Jan Goings:

That's powerful. Tell us or why did you step into this work, Carol?

Carol Combs:

I stepped into this work because of what I learned myself going through a family project and recognizing that there is so much more to my children than any labels attached to them, whether it's a disability or other. What I discovered was that by being in the space and turning outward towards community, rather than sinking into the certainty of the systems, there were people around us waiting. And we also discovered a lot about our family and our gifts. And when you start sharing those and connecting with others around shared passions and common interests, a whole new world opens up. And so I want that for everyone and I believe that the work that we do really not only strengthens the family unit, but it makes stronger communities too.

Jan Goings:

Achsah, is that some of the similar callings that you had for stepping into the Family Network work with Starfire?

Achsah Fitzhugh:

Yes, and some words that were given to me simply as there's more, there's more, and to hear that there is more beyond what I already had made me just explode for Starfire and I just wanted to know what could be possible for my son beyond the label that has been placed on him.  And through this work, guess what, we have an entire chapter dedicated to community because of us just wanting more.

Jan Goings:

I love that, there is more and to being able to take that time and space and the resources to explore what's out there. So Carol and Achsah, I know that there's family networks that exist in many places and Starfire’s Family Network has a unique part to it where it's really families to families mentoring each other and that approach seems to be really powerful and impactful. And I was wondering if one of you could talk about what that is, the family mentoring approach and why that's been chosen to be part of the way that the Family Network operates.

Carol Combs:

I just want to share first the work that we do. So, we have these projects, and the projects are like a vehicle to more connections and identity and community. In a lot of ways that work is countercultural to what we typically receive from the services. And what we're asking families to do just for a little bit is to turn outward and kind of look to community and explore what's there and who's there and who they might be able to ask rather than sinking into the certainty of the systems. This can be super, super scary. And so our mentors, they’re families, they've done a project and they've said yes to stepping deeper into leadership. What comes with that is those lived experiences and so this family-to-family mentorship of we've been there, we know the scariness of stepping out of a comfort zone and meeting someone new. It helps when you know someone is there and has had that same experience

It's the experience of building community and the mentoring model that we have it really helps us maintain vision even when things get tough. So, we've experienced as family’s rejection and to know that we can work through that and to have evidence to talk to somebody who's had to work through that too really helps. I also think this mentoring approach helps us make meaning. So, when I was going through and being mentored, we're learning a lot and we're unlearning a lot as Achsah says. And so it's an opportunity to make meaning of these lessons and the wisdom of what it means to go meet with a neighbor and coming back and talking to somebody else who has met a neighbor and kind of unpacking that really helps us stay on the path. These are folks that are visionaries, they're thought leaders, and what the mentors are doing is they're making the path by walking it and then sharing that experience with families who are new to that path and where they're saying, “Hey, we're going to walk alongside you and I'm going to take your learning as serious as I do my own".

And I think that's the magic of it, is all the mentors are really committed to helping a family see what's positive and possible.

Jan Goings:

This is not a question we prepped for, but who really makes a great mentor? And you're talking about that openness and really being willing to share what's learned and unlearn with others. Are there any other things that Achsah or you guys think that what's a great mentor? What do they look like?

Achsah Fitzhugh:

What I can do is I can speak on me. All mentors have their own approach with this work, and when I enter the space, I enter the space as a best friend, just like I do with my community. I introduce myself as their best friend. I inform the family members that this space is safe because that's one thing as a family member, we have to feel safe with the people we're connecting with and we do that, showing them that this is a safe space, free of judgment. That's how we see it. This gives them security and support to enjoy their family. So as a mentor, that's what I'm about because I know when I met my mentor, it was about seeing the good, not the labels, not the brokenness that was attached because of the diagnosis. That's not what it was about. It was about what is good and what is great, right?

So why do I say best friend? Why do I say that? I say that because if you take this moment and you just think of the word “best friend” in your mind, it turns into an internal smile. You feel it! I mean you feel it. That word carries joy. It just does. And because of that, it comes out externally without your control. I know people are smiling right now because you can't stop it. You just can't. So as a mentor, I try to make the joy the foundation of the relationship. So as I do that, I see the love. I see the excitement, I see all the wonderful things happening in front of me, and they're speaking the same language of seeing more, doing more, changing the way the culture sees the word disability. Diagnosis that has no value in our mentorship. It's just a word in the midst of how we came across each other.

Carol Combs:

I think Achsah nailed it. And to her point, every mentor has a different approach, but just to name, we're not gathering or coming together around this label of disability. What we're coming together around are these shared values and that desire for more. Achsah, you and I have learned so much together and one of my biggest takeaways and lessons that I've learned is that we actually learn more with each other than we do alone. So it only makes sense to have this co-mentoring approach and this mentoring approach where we're just talking to each other and we're learning about each other and we're discovering and we're helping extract the gifts and explore possibilities with that hope that we do find more connections.

Jan Goings:

I've heard you say gifts. I've heard you say joys. I love that, I've heard you say values and commitments. Those are really big pieces. It sounds like the foundation of the work that you are doing. And as I talk to you, it just comes across so strongly that that commitment is there. So tell me why this all works so people can really understand how this approach really is having an impact.

Carol Combs:

I mean, there's evidence with every single family touchpoint that we have. Each time I connect with a family, I hear something from them that says, “aha”. Everybody has a moment, A moment of that's it. That's why I said yes. That's why I pushed forward and that's a why I'm committed to. I mean, I've made a lifelong commitment to this work because not only are relationships essential to who we are as humans, but we know that we're safer when we know people, we know that there's really good energy. We know that there are people waiting to be asked to step a little bit deeper into our lives, whether it's around a shared passion or it's because we are in the same geographical space. It's the intentionality of just wanting a little bit more for our children, a little bit more for our families. And for me, I'd like to think that the work that we're doing right now in this moment, the work that I've done with my family over the last seven or eight years has made it easier for the folks that come after us to be able to say, hi, my name is, and start building connections.

Achsah, what do you think on that?

Achsah Fitzhugh:

I would just say for me the why not. Why not? Why not see beyond the basics that I see? Because if I didn't as a mentor, as a family member, as a person with a child with a disability, if I didn't step into the why nots, I wouldn't be here. And the why not is never a discussion. It's never, it's about this is going to happen. This is not going to happen for your child. This is what we see. This is what these markers say, this is what we saw in the womb. It is never about the why not. Why not my son? Why not? Why is he not included? Why is he excluded? So I get to step into this space saying he is, he is. And because I get to say that he's walking around with I am. So I love that we have our vocabulary that has shifted because that's what it is. The vocabulary has shifted, his internal feel for his self has shifted, everything has shifted and a brand new place for us as a family, as we have supported other families, ourselves in this work. To hear my son say, I am, come on. I mean that is the biggest thing to happen in life is to hear your child say, I am.

Jan Goings:

That was so, so powerful. Thank you. And I would imagine as family mentors connecting with families new to this journey, you get to hear that moment maybe over and over again to hear that unlearning and not asking why not, but what's next or what's more. I can imagine what that feels like connecting with other families.

Tell us more about how mentors are supported and you're learning and your constant development. I'm curious about what that looks like.

Carol Combs:

Well, some of it is right here on this podcast right now. So one of the things that I've taken a lot of pride in just in my role in developing the network to the family network to what it is today, is the intentionality behind, we call them on-ramps, ways for families to engage. Understanding being a parent myself, time, one, is the most valuable resource that we have. And two, life can be unpredictable no matter who you are. As humans, we face human conditions that are unpredictable. So we have created a space where families can hop in however they can, however time allows. We're empowering them by investing in their continuing learning, providing them the same resources that we as Starfire staff receive. We're offering that to families. There's endless opportunities for them to connect with each other as well. So learning is lifelong. And in a world, that's ever changing, we create spaces.

One of the on-ramps is coming together and sharing out wisdom that we've gained and seeking out wisdom that we need to help a family take a next step or to even take the next step ourself. There's also a level of curiosity that comes. And so the more curious families are, the more those on-ramps kind of unfold for them. It really is self-selected, self-chosen as to how you engage. And so Achsah, do you want to share a little bit of your experience? I mean, you and I have been partners and colleagues in this work for four or five years now. What can you speak to around this piece?

Achsah Fitzhugh:

I'm going to speak on some of the trainings I have been a part of and what they've done for me today. Some of the learning was hard because I had to unthink, rethink, overthink all of things. I had to do them all simply because some things I didn't know existed. I was blinded by some of the things. I just thought that was normal when it wasn't. So I had to learn some things about social role valorization. That was one of the things I had to go through. And boy, oh boy, that was one of the hardest things I have ever encountered. But you know what? It was needed. It was so needed to see what I did not see. It actually led me to a place of removing the title, which I know a lot of us know of connecting our children to the words, “something with special needs”, “soccer with special needs”, everything with the title attachment of “special needs”.

I learned that I was unintentionally segregating my child by putting him in activities that had the intentional label of “special needs”, which meant I was actually restricting him from being who he could be by saying you only could be a part of this group. And I wouldn't have seen it that way if I didn't go through that training. And I also went through training with Families at the Center of a Connected Community through Starfire. And if I didn't go through that training, I would've never knew some of the things I attached to my son's diagnosis as that's normal. Those were actually stereotypes that I was attaching to him. So the culture was definitely playing the field in my mind. But going through that training, I learned that my son needed his diagnosis removed from the driver seat of his vehicle of life, and it needed to be put in the trunk of his vehicle where it belonged to only be removed in a medical setting and to place him back in the driver's seat of his vehicle of life.

I wouldn't have thought that was happening if I didn't realize I had put a name tag on him with his diagnosis that was his name. And to find out I created that, I supported that, I did that. I'm taking that charge. I am, but today, that's not what it is. And if I didn't do all this work with Starfire, I wouldn't have seen it this way, period. I wouldn't have. So that's all I can say to why you should do it, why you should connect is because you will unthink a lot of things that you have carried for a very long time. It's hard, but once you do it, it's great.

Jan Goings:

Thank you. Achsah. I know you said as a parent you take that ownership and responsibility, but the culture tells us that's how we respond. We've all learned those messages, and so we all have a responsibility to shift our thinking and our language and as you said, put disability in the trunk of the car and only pull it out for those medical reasons. There’s identity well beyond that label. So as you all are talking about the family network and mentoring, I'm curious about what that really looks like as a family mentor.

Carol Combs:

Yeah, so the family mentoring process, one, it is one-to-one. Each and every family is different and unique. And so part of the mentoring process is understanding where families are at and meeting them there. So what's a family mentoring process? One, when a family says yes, they get connected with a mentor. And a mentor is someone who's done a project, as I shared at the beginning, has these lived experiences and said, yes. I'm committed to taking someone else's learning as serious as my own. Part of the mentoring process is creating these unique touchpoints that meet the family where they're at. Maybe it's evening, maybe it's morning time, maybe it's midday, maybe it's a random phone call. But our hope is we get a rhythm established. It's in that space where we're taking a deep dive into the four commitments and we're exploring what does it mean to discover gifts?

What does it mean to create something unique to you and your family? What does it mean to build connections and how do we anchor ourselves in joy?

We provide families access to trainings and podcasts and articles. And so we have over 50 years’ experience when we look at our mentorship team of wisdom and these lived experiences when combined, that we're exchanging that and we're passing that along to families. And then we're learning some things too in the process of like, oh, that really helped a family see that it is about the birds or the monster trucks or the art. It's also just us coming together and letting families know that other people are thinking differently too and providing them tips and tricks. How do we meet a neighbor? Surprise. John McKnight taught us some of those things back when he was coming to Cincinnati on a regular basis.

Recognizing that we don't have the answers all of them, right, Achsah we don't always have the answers to help a family navigate around an obstacle.

So with our team, it's so rich, we can say, I don't know, but I know somebody who does. And then we can invite them into that space. And there's already a sense of trust because they've trusted the family has grown to trust the mentor, and they see the mentor inviting this person in who they trust deeply too. And so then there's this natural evolution of, okay, I was super scared or this felt really hard, but now because I've heard it again, maybe in a different way, I now have the courage to step forward. So when you're in that mentor space, that is what it looks like.

The mentoring space is also a time for reflection. So Achsah shared, we're unthinking some things. We're having to learn some things. And so we set the stage for a safe space for the mentor and the family just to connect and talk through some of the good things that they're experiencing and some of the hard things.

We say that very boldly and truthfully, that it's the culture that makes life hard for our children with disabilities. It's not our children with disabilities that make life hard. And so like John McKnight always said, “every neighborhood has a different rhythm”. Well, so does every family. Every family has their own rhythm. And so this one-on-one, co-mentoring gives space for families to explore safely. It gives them a space to join this dance of connection and community and relationships. And sometimes it can feel a little chaotic. And so again, just knowing that someone in that space, the mentor has that experience.

The other piece of mentoring is we are all experts in community building, but we also have different lived experiences. And so what one family may come up against, may not necessarily like a mentor, may be like, I really, because I'm taking their learning as serious as I do my own, I want to make sure they're hearing the wisdom of someone else who has been in the same moment and how they worked through it. So we run on listening deeply to the family and listening deeply to each other because it's in the space where we're just supporting each other. We all are working towards that same goal.

Jan Goings:

All this amazing work that you all are doing and the investment of time and trainings and experience where do you hope this work evolves into, what's next?

Achsah Fitzhugh:

For me? My dream is that we get to the point that in this culture, diagnoses will not be a discussion of everyday conversation because that's what it's as we talk in everything we do, we want that humanity anchor to be represented. I mean, you don't have people walking up to you telling you, I'm a diabetic and shake your hand. They don't give you that. They say, hello, I am Katie. Why can't that happen every day without us creating that to happen? It should naturally, it should be, hello, I'm Achsah not, hello, I'm diabetes. That's my hope.

Jan Goings:

Love that. Moving beyond that and really to see the person for who they truly are, all their gifts, talents, strengths, passions. Carol, what's your hope?

Carol Combs:

My deepest hope is that everyone gets people in their life, even if it's just one new relationship that is one more than they had before. And so my hope is that over time, because it does take time, we've been at it for seven, almost eight years now. And so at times the work can feel slow. But my hope for families is that they find, build, create a strong social network that supports their child, their children, their family, where they are named and known and seen as the amazing humans that they are, that they hold valued roles and valued roles. I mean, neighbor is a valued role and we can all be a good neighbor. So my big hope is that everyone has these connections and it's possible. I mean, when we started our family project, we only knew family and a few close friends. And now because of my son and his ability to connect our family with so many people, we have so many people around us who love us and care for us and want us to be in their lives, and we want them to be in our lives. And so my whole point is a good life is connected to the people around us.

But I just keep thinking about maybe somebody out there listening is like, so what do I do next? What do I do right now? And so if someone is listening to this and you're asking that, what can I do right now? Find something good to do, find some people to do it with you and just do it.

Jan Goings:

Thank you both for sharing that. I mean, I think with those two expressions of hope and desire, that you also see a generational impact. So it's not just right now, right here, but it is hopefully the next generation and those friends, that we're not having these conversations that it is really about the longevity of the work, deep relationships within community and neighbors. And that to me is very hopeful. I think that just resonates why this work is really different and really has that purpose at the heart to really make those valued roles and connections long lasting and longstanding and very important. So I want to thank both of you for your time and sharing your wisdom and BFFs. It does bring me smiles and I appreciate you both.

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Jan Goings: Hello everyone and welcome to Different With Purpose. I'm Jan Goings with Starfire in Cincinnati, and today I'm chatting with Pamela Whiteley and Kyle Miller, two awesome thinkers and practitioners in the disability field. Welcome you two. Glad you're here.

Kyle Miller, Pamela Whiteley: Hello Jan. Hey Jan. Thanks.

Jan Goings : So I want to take a minute to introduce Pam and Kyle. I met both of them this year. They’re two awesome folks, and with Starfire, we've been working with Fairfield County and doing some thinking together and so working together. And so I would love for them to talk a little bit more about that. So let me first introduce Pam. Pam is an artist and she was showing me her amazing paintings a few minutes ago. She's a graduate of Ohio University with a Bachelor of Fine Arts and a minor in theater, and she's worked inside Mansfield court system and did job training out of Columbus and then went to Blue Shoe Arts, which was an art studio for individuals with disabilities, which eventually transitioned into an inclusive studio and is now its own nonprofit that supports local artists. And Pam, just getting to know you, I think that's probably a goal of yours and a pattern, the work that you're doing to really support the inclusive opportunities for all. Currently, Pam is with Fairfield County Board of Developmental Disabilities and provides as a community builder and training specialist and is helping to develop training and supporting providers and partners in identifying those community resources that are connecting others to more inclusive communities. Pam, I'm glad you're here.

Pamela Whiteley: Thank you.

Jan Goings: And Kyle, longevity in this career, I love this, began working as a direct support professional where Kyle has provided training, coaching, and job development, began as an employment manager, followed by the director of adult services in Licking County and joined Fairfield Developmental Disabilities as the adult services director in 2015. And is just really doing some amazing work in providing that leadership and helping to transform and lead the initiatives around more inclusive work. So, I'm so glad both of you are here today.

Pam, you want to just go and jump in and add a little bit more? Tell us a little bit more about yourself. What lights you up for the day?

Pamela Whiteley: Lights me up for the day? I guess depends on the day. I don't know. I think there is, and I don't know if it's always been there, but probably this underlying drive to see people just be taken more seriously. That was pretty heavy when I worked with artists in the segregated studio. I saw them as an artist and I saw the awesomeness that they were bringing to the table, but then seeing that change and shift whenever the artwork went into the community and how it was viewed and how seriously they were taken. And I knew as long as these artists stayed under the house of the county board, they would never be taken seriously. And so that's always been the drive. And I think even now that the art has changed and now I'm just working with people of all types and providers, it's still how do we get people to be taken more seriously in their community?

Jan Goings: That's a very powerful question. Kind of a lifetime work, right?

Pamela Whiteley: Yeah, unfortunately.

Jan Goings: Kyle, what lights you up for the day? What's going on?

Kyle Miller: Well, I think the reason I've been here for so long is I really believe in the potential in people and I like to see them reach their potential, whether it's been working as a direct support staff, as you mentioned earlier, coached some sports awhile before I had children and then when they came along I kind of coached some of their sports. And I think it was all the same thing with the people that we support, whether it's athletes, whether it's people that I get to be the supervisor of and have the opportunity to work with people like Pam just to give them opportunities to grow and reach higher than maybe they ever thought they could, I think. And that's what keeps me coming here every day.

Jan Goings: That's awesome. So tell us a little bit about county systems. We might have listeners that really might not understand county boards of developmental disabilities. Who wants to try to tackle that one?

Pamela Whiteley: Okay, you want me to?

Jan Goings : Ohio is different for the way we provide services from other states.

Kyle Miller: So because of the Department of Developmental Disabilities, I think it really makes us unique even though that can be a blessing because we have a cabinet level director in the state government, it really just creates a bigger and bigger system. And so my philosophy alone, I really feel like we've got the system that was created for the people that have the highest needs, and then we try to put everybody into that system whether someone has average needs or hardly any at all, we still try to pigeonhole them and put them through the whole process of whatever our system is. And it's a very lengthy and intrusive system that I think more often than not sends the message to the rest of the world that the people that we support need the system and keep them away. And so that really is frustrating. I think Pam and I would share that frustration and I think we often, I don't know how many times a day, but a lot are talking to people about let's try to figure out ways to help people survive outside of the system. Pam, I'm sure you've got more information on better words than I've got.

Pamela Whiteley: The only thing that I see happening is that, and maybe this is more of an empathetic view towards the system, but I think what county boards were created in 1967, is that right, Kyle? And so, I think when the county boards were created, it was an attempt to create a better system because of all the damage and hurt that the system had already done. And so I think that it was like how we can do better and we can be better, but what they did was create this really big monster that I think has evolved and it's changed because the mindset that's underlying it all has not changed. So even though it was an attempt to make amends and make lives better of people, it also is the assumption that a life can't be great without the system. I think that's the double edge to that sword.

Jan Goings: Would you agree that our community sees systems, boards of developmental disabilities or unique organizations that are specific for people with disabilities and say, you got them, this is your responsibility, you're the experts? And then our communities step away maybe feeling inept, maybe not knowing how to contribute because they might not feel like they have the expertise and that is that double-edged sword, right? Some people do need supports not always as deeply as some with higher needs, and yet everyone is kind of in that same identity as disability and creates that limitation.

Kyle Miller: I agree, Jan, I think what I like the way Pam talked about empathy sometimes I'm not nearly as empathetic as I should be and I haven't been here since 69 or 67, so let's just…,

Jan Goings :Yeah, let's get it, that's on the record.

Pamela Whiteley: I didn't mean to assume you were, I'm sorry.

Kyle Miller: But there's so many things that I look back over the many, many years that I have done this and I've done a lot of things that today I'm saying, why would I do that? And I scratch my head. And I think that's a piece that we have to remember. Like Pam said, the system was put together, parents went out and solicited support for people their family members, we got to do better, we got to do better. And then what we've done is we think that we're doing these great things and we go out and do so many things for the people that we support. My biggest part of my experiences is from the employment piece, and so many times we would go out to the business communities and basically it would be our reputation on the line about, “hey, let us do this for you”. But we were really asking them to do things more of a charity perspective than here's what's good for your bottom line.

So the message that we sent, and I think we're still sending as a system in the DD world, is this is the right thing to do, which in essence, the people that we support have this, like I've said before, the potential. And one of the things that's just glaring to me is the unemployment and at least in the state in Ohio, and I think it's nationwide, but we've got all these people with disabilities that are unemployed and have never had the opportunity to discover what that even means and that opportunity for them. And so again, the message that we send as a system is, like you said, Jan, depend on us. We'll take care of it. We got this. We all know that anything in isolation is not really successful.

Jan Goings: Can you share some of the work or some direction that you're doing around that employment area for people with disabilities?

Kyle Miller: So because here in Ohio we basically, the county boards are not doing much direct care or any of the direct care stuff. So we're really completely removed from doing this stuff. So what we're trying to do internally is get the rest of the county board to recognize how those other, there's so many other naturally existing resources for people with disabilities. For instance, when we go out and we have a job developer knocking on the doors of employers or have to sit down with somebody and because they're getting revenue to spend time with a person to complete their resume, again, we're providing people all the services that the most significantly the people with most significant needs have and putting everybody in that block. And so our vision here in Fairfield County is how do we communicate to the rest of our staff and our coworkers that people can support themselves or they can have a lot more success with less intrusive support. So how can we help them connect with the naturally existing resources for everybody? So that's kind of our focus right now from an employment perspective.

Pamela Whiteley: And I think just one more thing that is not news to anybody really, but I think unless you really see the inorganic way that we support people with disabilities to do things that nobody else would do in a way when it comes to employment. So we talk about how powerful relationships are for instance. There's so many people that we know that are working in the system, and if you ask them how did they get involved and how did they get this job, it's probably going to be a high percentage of people that knew somebody or that it was through a relationship. But yet we don't have that same thought process when it comes to a person with a disability that they could possibly have a relationship that would lead to employment. So then we say, we have to fix you first because you can't just go out the way you are. So sign these papers, come to us and we'll fix you for however many years till we decide that you're ready then to go start looking for a job. And we're the ones that are the experts that know best. None of us would do that. We would've jumped ship a long time ago and said, I think I'll take this and handle it on my own because you don't appear to be doing me any favors.

Jan Goings: I think about, as you said, when people are looking for jobs and employment, it's about connections and who do you know and going out and having coffee with someone and kind of reaching out and it might take some time and it's establishing those relationships and connections. And I know you all are doing some of this work, helping people identify their interests and passions. It's not just a job, but something that really brings out the joy and the gifts that I have. Can you guys talk a little bit about some of the work that you're doing maybe with helping people understand the importance of community and connections and relationships?

Kyle Miller: Before I am going to let Pam talk about that because she's great at it, but you talk about it with regards to employment and I think one of the most biggest points that we should emphasize, so many providers of employment have a connection with a business. And so it doesn't matter what the person's looking for, this is their connection and that's where they're going to find them a job and attach them. What kind of a message do we send when we're bringing someone that's really not motivated to be there? I like to look at employment the same way as we do everything else. Let's dig in and find out what someone's passion and their interest is. I just watched a video this morning. Basically, you should do what you love because then you'll love what you do. There's so many times I've seen people with and without disabilities have barriers to success, but if they're doing something that they're passionate about, they'll figure out how to get over those barriers on their own. They don't need us to do that.

Jan Goings: Well said! Well said. Pam, you were going to say something about making community connections, community building?

Pamela Whiteley: I think he should drop the mic on that.

Jan Goings: I know. I love the mic moment. Thank you, Kyle.

Pamela Whiteley: That's been his thing. I think Kyle has always had, since I've known him a very, I don't know, I would say against the grain view towards employment because it is a bit more natural. It's the way things should be, but it's so different than the way the system has approached it. And so I think he's gotten a lot of pushback from the system because they have to take an honest look at how they're doing it. Is it the amount of time, human resource and money really doing us the thing that we think it's doing?  And I think that's a hard look in the mirror. And I don't think there's a lot of people who can do that where I know that's something that Kyle has no qualms about making adjustment. If it's not the right thing, it's not the right thing and he's going to do the right thing and make sure that he's changing it. And it's always been in the best interest of the person who's utilizing our services. It's never been at the benefit of the system.

Jan Goings: Well, that's leadership. That is truly leadership. I often think about leaders who are really disruptors or really about the mission and the work. It takes a lot of energy to do good work like that. And I think about how do you refuel yourself to really make that happen? And I know Pam, we were chatting earlier about just being curious and asking questions and finding folks who are willing to engage in learning and thinking a little bit differently. Sometimes that will help refuel not the passion because the passion is there, but just the energy to keep moving forward. Can you talk a little bit about some of the experiences you might've had around exploring your curiosities and things like that?

Pamela Whiteley: Yeah, I would say probably, I don't know. It was the first meeting that Kyle, when he started working here and we had a meeting and he was really just trying to figure out what I was doing and what it was all about and how an art studio should be within the county board. And he had a lot of curiosity, but one of the things that I think he's allowed for me to have, which falls into my passion, is a drive to learn more. I've always asked questions and wanted to know, but why we're doing what we're doing? And so I've done a lot of deep dives, a lot of reading and research, but I'm also passionate about that because I don't want to keep doing something and then not  for why. I'm always asking why are we doing this, which always leads me to another and another. And so I think that ability to continue to learn why we're doing what we're doing and how we can do it better, and then also finding people who are doing things differently and doing things better. There's just been, I think it's that freedom that I've been able to have within my job and within my realm that if I was told to just not ask questions and keep doing it, then I wouldn't be here.

Jan Goings: That's awesome. So I'd love to know a little bit more about what's happening in Fairfield. What are some of the transformation work that you're all doing and some new initiatives that are happening? And we know it's day by day and incremental.

Kyle Miller: So I'm going to talk about the 30,000 foot level and I'm going to pass the ball off. One of the things that our former superintendent, I think he brought me in because I'm a disruptor. I mean, that's kind of what he wanted to be and how do we do things better. And again, I think Pam mentioned it earlier, John's vision and mine are how do we help people with disabilities live better lives? And after he left and our new superintendent came in who had worked with us before, believes, don't try to restrain what we're trying to do, but let's make it grow. And so I think as a leadership team, we spent the whole first part of this year digging deep about our mission and our vision of our organization. How do we get everybody in this agency on the same page using the same language, using the same words?

And it's been a challenge, like I said, John and I, but were doing it for years and we just never really found the right way to do it. I think David's his new vision for that's how we're going to do it as an executive leadership team and rolling it out and the expectation, I think the expectation is so important. I believe that expectations has such a powerful impact on everyone, but if our agency, if one out of the 150 people from this agency is talking something that counters what we're really trying to do, I don't know if we're going to make any movement at all. I think we all have to be saying the same thing. And I think that's where we got started this year alone.

One of the biggest things that I could even say is we brought Starfire in to work with our staff, our department alone, and then some of the providers and other staff in our agency, and then for the whole agency the past month. So helping everyone recognize where we're going, understanding the words we're saying and the philosophy. And the fact is it's all based on people that we support living better lives.

Jan Goings: Thanks for the shout out to Starfire. We've enjoyed that relationship and working with providers and really helping to think through the experiences people have with disabilities and as you said, coming up with a common language or a framework to really understand what's happening and to be able to make change. So thank you, Pam. Is there anything in addition?

Pamela Whiteley: Yeah, some of our early conversations, we found that there was a lot of commonality into the barriers as to why things weren't a different way. That was easy to do. Now the hardest part has been agreeing or getting a common, like he was saying, a common vision and voice to a way forward. And so that's been really tricky. And again, I can't stress it enough that I think it's our mindset. It's that base, that underlying drive as to why we're doing what we're doing is different for different people. And that's where we're, I think, torn in some ways because me helping somebody might look different. My help might look different than your help. And so that's been tricky.

I would say some of the things that we've talked about, which is not going to be, it's not rocket science, but obviously how can we do things earlier? How can we change some of this messaging and mindset earlier in life?

Jan Goings: Talk a little bit more about that. Are you meeting with individuals with family members?  All of the above?

Pamela Whiteley: Yes. All of the above, education system, the families too, obviously. I think the more we can equip people who are utilizing the system and their families the most, I think they're going to be the game changers. And so I think if we can get that going more, I think they're going to put the pressure on the system to do better and do differently.

Jan Goings : Yeah, I was going to say we have evidence of that families really creating inclusive schools and legislation and all of the things that family voice has really been powerful. Absolutely.

Pamela Whiteley: Yeah. I think that's the bigger, it's kind of frontloading our efforts and kind of shifting some of those resources to be working with younger families and seeing the capacity of their community. I mean, I think that's what we've learned a lot from Starfire and the work they've done, but not just that, but the asset-based community development that's happened anywhere and some of the other practices that I think Starfire has learned about and started implementing, seeing those positive changes. People come to us looking for the answers and I think us maybe empowering them and changing that momentum from us being the fixers and the ones that are coming to the rescue, to them recognizing their own capacities and where their power lies, I think is another thing that as an organization, we're really trying to, I would say within the next couple of years, there should be a big shift in that as far as our messaging goes.

Jan Goings: And to see some of those answers and support within the community, within the neighborhoods. Yeah.

Pamela Whiteley: Yeah, I think early you had asked a question and one of the things that I think I recognize is that there's just a lot of things that our system is doing that they don't have business doing and they've always done it. So I think we have to change some of that. And the art studio was one of those, and there should be no art studios within the DD system. It should be a community.

Jan Goings: So we're going to wrap up in a little bit. I am curious though, if you could change one thing, what would it be?

Pamela Whiteley: Like ever, anywhere?

Jan Goings: Go big! I don't know what my change would be, but I think we have changed language so much that I think it confuses people, whether it's “inclusion” or “diversity” or all of that. And ultimately, I think Kyle, it's back to what you said to me, better lives for everyone. And I think of “belonging”, we have all this language that I think makes it sound like we're creating change. And maybe there is some, but I think it gets lost into, I think the day-to-day reality. So I don't know what my change would be, but somehow figure out, as you say, everyone getting on the same page with that language, that really does drive some of our work.

Kyle Miller: One of the things that, and I go back way back, as we all know, when I got started in Licking County, we had a focus on training and learning and transferring power. If you're in the system in the seventies, which I wasn't, but in the seventies, Mark Gold was trying to do some revolutionary things and he talked about this transfer of power. He used the word power, which I think is a fantastic way to look at it. Transferring the power from the trainer to the learner. Early in my career, whether it was a DSP or when I was in the employment area, it's like, how do we help people to have that power? Now we're talking about independence, whatever we want to call it, where they're doing things on their own. If we could really focus on transferring the power, I think of our system and trying to be empathetic, you just think about if you're in our field, it feels so good to do things for other people. Look what I've done, it makes me feel really, really good. And I think that we've gotten to the point where that's what our systems become.

I'm telling you, it feels so good whether you're a parent, a coach, a supervisor, or working with people with disabilities, when you've transferred the power and they've not needed you anymore, that's the coolest thing ever. And I think if we could get back to that piece where we would all recognize our small piece of someone else being successful, if we can just transfer more of that power where they can do things on their own, man, I think the whole system would take off.

Jan Goings: Love that. Pam, did you come up with one?

Pamela Whiteley: This is going to be muddy. Alright, so of course I keep going back to history and saying, could we change one thing from history, but I’ll relate it. I think back to the early education system, like the one room schoolhouse of somebody having a class of anywhere from a kindergartner to a high schooler all in the same room. I would change the fact that if somebody couldn't learn, they took them out of that schoolhouse to go somewhere else. I would change that, they would've brought another teacher. So relating that to today, I would change the fact that we keep removing people from the place that they need to learn and the people that they need to learn from. And that's in school, that's in the community, that's within our system, that's in my house. Let people learn where they're supposed to learn and stop removing them from those places.

Jan Goings: Provide what they need in those settings, right? Yeah, I love that. Those are really two amazing points of wisdom.

Kyle Miller: So one of the things that we talked about a lot is our SSAs have to feel, they've got to feel like they're drinking from a fire hose because it's just constant stuff that they have to do. And I'm reminded, and young people aren't going to remember this, but I'm reminded of the Lucille Ball when she was at the chocolate factory trying to keep up with conveyor belt and she couldn't. So she was putting the chocolate everywhere. And it's like if you had to do that every single day for seven and a half or eight hours a day, why would you stay? And I think if we flip it to where we are, and again, I think we're working really hard to figure out how we can take the focus and the spotlight back on the people where it belongs, where we can support them and still meet those minimum compliances, those things that have to do with regard to the system, but really, really put the priority and understand that everybody here believes the priority is the people that we support.

So you can drink from a fire hydrant if you're, every once in a while you get a little gasp. It's like, having a great success because somebody would come in and brought the hose for you, and you get away. That's when we have those victories, and we see those successes of people not need us as good because the reality is you're going to have a caseload of this many people and it's never going to change. You may have 20 people leave your caseload, but there's 20 more waiting in line. That's never going to change. So we have to help them realize, give them some hope, and everybody in the system, some hope, just like the people that we support. And I think it makes it better for everyone.

Jan Goings: I love that, we have to give people hope that this work is doable, that they have the tools and resources and the support to be able to help and to be successful at their job. Everyone wants to have that. If not, we're turning people away or they're leaving our field, and we know we don't want that to happen. So I love that example of Lucille Ball and the conveyor. I do know what that is.

Pamela Whiteley: I was thinking as you were talking, one of the things that was hard for me, and it's not that I didn't know, but I was at that ABCD conference and it lays out really how institutions fit into community building. And we as an institution have this belief that we are much more important in that process than we are. And I think that was a hard thing to see, oh man, I had to question that, of the community building, of doing great stuff, am I in the right part? Is being in the institution the right part of that piece? Because it's really a smaller piece than we think. What are our assets? What are we really powerful with, and what are we rich in and how do we stick to those things and not overstep into these other realms of pretending that we are the community? And that's what I think we've done, and people still believe that. So that's what they've expected from us.

When you think about that, then that does create a fire hose effect, right? Then you have to be all things for a person and it becomes weird and too much and puts a lot of pressure on people. So the best way to drink from a fire hose is to turn your back and let it just sprinkle. Just get the drops.

Jan Goings: Oh, there you go, great image!

Pamela Whiteley: Or the puddle after it turns off. Yes, or not stand in the fire hose.

Jan Goings: Just find another place to drink from right? We can take that metaphor all the way out. I want to say thank you to both of you. You are truly dedicated folks out there doing the hard but good work and thanks for sharing your insight with me and our listeners. This has been really powerful to hear your stories. So, thank you both.

Kyle Miller: Thanks for the invitation, Jan.

Pamela Whiteley: Yeah, thanks for having us.

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Jan Goings:

Hello, everyone. Welcome to Different with Purpose. I'm Jan Goings with Starfire Cincinnati, and today I am chatting with Allison Lourash, scholar and practitioner of asset-based community development. I'm really excited to speak with Allison to learn more about the promise and practice of ABCD and what it means for individuals and communities.

My first formal introduction to understanding the richness of community was about 2010 in Cincinnati. My personal experience growing up with neighbors, family, teachers taught me that there was a deep richness of care, love, hope and hospitality. There were folks in the Cincinnati area talking about the power of community, and I wanted to learn more. I'm holding my copy of the book, The Abundant Community, subtitled, Awakening the Power of Families and Neighborhoods, authored by John McKnight and Peter Block. And I learned quite a bit from reading and listening over the last 10 years.

A couple of things and points that resonated with me was this idea and premise around the idea of abundance. Abundance is about a variety of gifts and assets and capacities that exist in our community. And our communities are abundantly filled with individuals and neighbors in their own place that they can call their own. And secondly, there's a power in creating new connections and relations among them and between what we have in our own neighborhoods and communities. And third, one thing I realized and as John McKnight and Peter Block share, those connections are not by accident. They happen when we individually or collectively act to make those connections. I'm really glad to make the connection with Dr. Allison Lourash, a leader, scholar, and practitioner with an abundance of gifts. Welcome Allison.

Allison Lourash:

Thanks for having me, Jan. That was a great story and thanks for sharing it.

Jan Goings:

So let me share a little bit about your background with our listeners, and feel free to add more. Allison is identified as a disabled community scholar practitioner. Her research centers around social capital, which I love to talk more with you about social capital and people with disabilities, as well as policy and evaluation of human services programs. Her PhD dissertation focused on community practitioners, working to advance inclusion for people with disabilities using an ABCD lens. And that's what we're going to chat about today.

Allison is also involved in numerous projects with the Asset-Based Community Development Institute at DePaul University, serving as a steward and board member. And welcome Allison to today, and love for you to share more about who you are and the work that you do.

Allison Lourash:

Sure. I was introduced to ABCD or asset-based community development maybe like 15 years ago as an approach in human services or as a lens in human services and have worked most of my career in education or human services around supports and programs for people with disabilities.

So at the time, it just made sense to me as many others say about ABCD. And so, since then I've been really trying to infuse it into my day-to-day work as well as in my work with the ABCD Institute and other projects, including my dissertation.

Jan Goings:

I know for Starfire, asset-based community development has been one of the foundations for our work. Tell us a little bit more about that and what ABCD means to you.

Allison Lourash:

The core of ABCD is that it is resident or community driven. It's not institutionally led. So institutions being government, nonprofit agencies and other organizations who typically hold the power in communities and the funding for projects to improve communities. So relationships are essential in ABCD work. So really thinking about the community as a network of neighbors and what does that look like and what's important to them?

I think the other core piece of ABCD is that it is a glass half full approach. So focusing first on what's strong in a community, not what we need to fix, not what experts or professionals need to come into a community and solve problems that they identified. It's really about looking at the community and that their residents have gifts and talents to contribute to that work and to their community. And when everyone contributes their gifts, magic happens. So it looks both at the assets of the community itself as well as the individual residents, especially those who are underrepresented often in community work or marginalized. And it's looking to build those relationships, especially those that can be mutually supportive. And so when you shift that focus and you shift community planning and community work to an ABCD lens, it really looks very different in terms of roles and power and creates greater opportunity for people led efforts.

Jan Goings:

I grabbed that phrase, the magic happens when you said that, right? So when we pull in the gifts and connections with folks, the magic happens and that shift in power that it really goes back to community and people to own those experiences in the neighborhood. Do give us an example of where you've seen the influence or the impact of ABCD in a community or a neighborhood?

Allison Lourash:

One example I use a lot is several years ago I was working with folks to create a time bank, which can be in, when we talk about social capital, reciprocity is the key component of social capital. So time banks are a way to mutually exchange your gifts and talents with your neighbors, but also find your neighbors that have other gifts and talents that you're in need of.

And relationships are formed that way and reciprocity takes place and just a greater sense of community. A time bank can also, within other contexts, especially for people with disabilities, look to be an opportunity to maybe use more natural supports than services. And I think really looking at using an ABCD lens for a time bank of one, bringing community members together to create that and what it should look like, but also looking at what is the role of institutions and community work. In ABCD, we talk about four questions that frame ABCD work. And the first one is, what can community members do by themselves? That's an example of really thinking about that main question and realizing that institutions don't necessarily need to lead everything in community.

Jan Goings:

Using that lens of ABCD. How do you facilitate communities to help identify those gifts that are probably abundantly in their community?

Allison Lourash:

One is really getting to know a community. This is relational work. So if you're a person maybe from an institution or from an organization where you want to support community, really getting to know the people in that community. So building those relationships, sticking around for a while, it's slow work, but also identifying and working with those key community connectors. Some people are just natural community connectors and also there's just those key community connectors or elders in a community that you want to understand where they're coming from and know what's important to them. So the grandma who sits on her front porch a lot of the day and knows all the kids in the neighborhood is somebody you want to sit on the porch with and learn from. I think that's one of the key pieces of doing this work and also bringing community with you as you go.

Jan Goings:

I love the example that grandma sitting on the porch and it sounds like relationships, as you said, take time. There must be an element of not only a time investment, but intentionality and also perhaps being a keen observer about what's happening in your community and your neighborhood. I know one of the things I like to do is to walk my block. And I know the woman who has a dog that's a black doberman, or if someone's trash cans are still out later than typical, like paying attention to that. But also the neighbor children across the street that love to have the lemonade stand and being able to spend time connecting with them and being really intentional in those experiences. But it does take time. I would say maybe boldness or courage. Would you agree with that?

Allison Lourash:

I think for some folks, maybe a little bit of extroversion to initiate those conversations, but also a level of stepping back and listening and observing. Thinking about if you're having a community meeting, who do you want at the front talking and who do you need in the back listening and observing the dynamics of what's going on. I think really listening to residents is a key skill to work on things in community.

Jan Goings:

So I'd like to explore this idea around hospitality you're saying as we invite people into community and relationships. How do we extend or create that and welcoming experience that people do feel included and connected?

Allison Lourash:

I think really being intentional and again, connecting with community members and knowing your community, I think about in the context of what I talk about on a daily basis and what Starfire is doing, really thinking about access and inclusion. So what does your community space look like when it's welcoming? Is it affirming to everybody to be in that space? Is it not just physically accessible and things like that, but really taking the time to know your community, to know the cultures and customs of the people in the community?

We talk about the six assets, and one of those is not just the assets that you can physically see, but things like traditions. Events and traditions is considered an asset. So thinking about what are the events and traditions that you want to incorporate into community work or be respectful of, but also maybe want to minimize because they've caused harm to people in the community. So all of that goes into planning a community event and getting a lot of feedback and also involvement from different community members.

I talk a lot about, I know folks are like, "Well, we welcome everybody." But how do people know they're welcomed? So I'm doing some work with some service organizations and how they are looking to include more diverse members and realizing that people look at your welcome before they come to your event. So do you put on flyers or different things that encourage people to ask questions if they're uncomfortable or they have concerns or if they're going to need accommodations. Just putting that statement on a flyer is a form of welcome because it says that you're wanting to start that conversation and make sure they're welcomed.

Jan Goings:

I love that. And those are just really great practical steps, but they really do have an impact. So Allison, I was listening to you as you were talking about ABCD, it seems like these principles and practices are universal, right? They are for all folks or all neighborhoods or all communities. Is there a specific connection around ABCD with people with disabilities? I know at Starfire that is where we position ourself in terms of connecting with people with families with disabilities, but I'm just really curious about how you see those interplay.

Allison Lourash:

It's an interesting dance because I see many human service organizations who are providing paid supports, wanting to look at how they support people with disabilities in a more ABCD way. But I think part of that is also recognizing that we need institutions, we need those paid supports, and that is a value to people and a needed service, but that doesn't necessarily represent community. And so how do agencies and organizations support people in their community while not being a barrier to be in community? I think it's a very finite dance of doing that. And I think even just acknowledging that nonprofit organizations providing services are an institution, and one of the key components of ABCD is really looking to the power of associations.

So not looking at needing to end supports, but how can supports look different to be in the background, per se, to encourage folks to be connected to their community. And I think for organizations to just acknowledge that they're institutions. There's a lot of excitement around ABCD work, but utilizing an ABCD lens also recognizes your role within that, but also recognizes that the idea of ABCD is not to, for instance, go to completely looking at natural supports. We're always going to need services, and there's an independence in community when, I as a person with a physical disability to be able to say, "I need this as a paid service in my home. I shouldn't ask my friend for this or my neighbor, I don't need my neighbor for this, but I need to be connected to my neighbor in this way."

So I think really looking at those types of things and continually asking questions about what services and supports look like can really help explore that and is this a support that we need to be providing? I also think on the flip side of that, if we had a community that was more welcoming and also more accessible to people that would also naturally support people with disabilities be in their community more.

Going back to the question of being intentionally welcoming, there's a graphic about kind of the inaccessibility cycle that if people with disabilities are unable to participate, they're not visible in the public. So then disabled people are seen as rare. So we don't need to consider that because we're not seeing people with disabilities in our area. So this kind of continual cycle of, if it's inaccessible and you don't see people with disabilities, you're not recognizing that you need to make things accessible.

We talk about that more in context of business or community spaces, but also just within community. And not just for people with disabilities, but many community events happen on Saturdays. If you are of a faith where that is your holy day, you don't participate in things. So that's a example of, well, why aren't these members of our community attending? So very similar things. So I think institutions, especially organizations serving people with disabilities can certainly have a role in the ABCD of a community.

Jan Goings:

Well, we are excited that you and your colleague, Indigo Bishop, will be coming to Cincinnati and facilitating a three-day learning experience around asset-based community development principles and practices. And I know it's probably not enough time over those three days, but I would love for you to share some of the highlights.

Allison Lourash:

I'm really excited because I think Starfire is really wanting to infuse some great examples of ABCD work into these three days. So we're going to provide a primer on the key components of asset-based community development. We talked about some of those, but also the values of ABCD and asset mapping, which is one of the core pieces of ABCD work that often happens in community and give attendees also some other tools and lots of stories.

So Jody Kretzmann, who is one of the founders of the ABCD Institute along with John McKnight who wrote what we call The Green Book, that kind of created the conversation and gave a name to this work as ABCD, said that stories are community's way of knowing. And so really trying to incorporate the stories. Indigo's from Cleveland and has done work there and also talking about my work in Wisconsin and Illinois. As well as Cincinnati within itself has a deep rich history of ABCD practitioners as well as projects and work that has been done. So sharing all of that and being in community with a great group of folks will be really exciting.

Jan Goings:

It's going to be a really great several days. Our event is held in Findlay Market area Over-the-Rhine. So it's a great active space with a lot of energy and sensory-rich experiences, and we're looking forward to hosting a number of attendees from all over the United States. So we're excited about you and Indigo facilitating us through this learning experience. Allison, is there anything that you'd like to add at the end as we wrap up this conversation today?

Allison Lourash:

I think also having the opportunity to work with Starfire in those three days to talk about things like placemaking and other approaches that use an ABCD lens will be really exciting. And just learning more about Cincinnati. I'm looking forward to that.

Jan Goings:

We are looking forward to having you and having some of our family mentors voices present and IOBY to tell some stories about the work that they're doing in Cincinnati and to really create a space where folks are walking away with the knowledge and tools and power of this experience, but also making some social connections and relationships as we are coming together.

Thank you again. It's a pleasure chatting with you today.

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Jan Goings:

Hello. Welcome to the Starfire Podcast about curiosity. We are introducing a series to explore the curiosities that are found in our work and in our lives. My name is Jan Goings, director of operations with Starfire, and today we are talking with Sara Vank, who also works for Starfire, as a content creator and family mentor, as well as a speech language therapist working with children birth through middle school. Hey, Sara.

Sara Vank:

Hello.

Jan Goings:

Today Sara's going to share how the Curiosity series came to be, as a professional and as a parent who has navigated systems and services. Sara, I'm curious, tell us more.

Sara Vank:

I have been working with kids with disabilities for at least 13 years, and I really, really enjoy it. I'm pretty good at it, but I had this experience about five years ago. I had a daughter with a disability, and then I became involved in Starfire. I was provided a family mentor and we got a stipend and we got to create a project of joy. We did our family project in our neighborhood and it was really such a catalyst and so impactful. I started to do a lot of learning and unlearning so much about myself, as a parent and as a therapist. I really started to look at how society perceives people with disabilities, responds to and supports people with disabilities.

The one thing I was noticing all along that experience, I had this constant motivation that made me make time for these experiences, these conversations, and I made time for the family mentor work and I made time for the discussions and the coffees about social value and the devaluation of people with disabilities. I had made time for conversations about how to practice joy, and I made time for how to own the story of disability and how to create a new narrative for my daughter.

Jan Goings:

Yeah. Time is really such a precious commodity. What was that driving motivation for you to make that time?

Sara Vank:

Well, I've been doing this for about five years, and then towards the end of last year I realized that that main drive to keep that space and those opportunities for those discussions, was curiosity. That curiosity I had about the narrative of disability, and I realized it was so rooted in stereotypes and devaluation. That was intensely personal because it was about my daughter, and then I got struck on my heels because I wasn't intentionally exploring that curiosity everywhere else in my work, and I work with children with disabilities. I had to take a moment and I was like, "When did I stop having this curiosity at work?" I started out super curious and I was very passionate, and I wanted to know where was that now.

Jan Goings:

I know I can relate, and probably many others can relate to that too. Why do you think curiosity is really good for our work in our workplace? Tell me some more.

Sara Vank:

Well, it's fascinating. There's a true connection between learning and curiosity. It's literally married in how your brain works. The more you have time to pause and think, the more your brain is engaged, it's more active, it actually increases serotonin, because when you feel you've learned something or you've thought about something differently, your brain likes that experience. It wants more of it. I realize when our curiosities are on the back burner and we're focused on procedures and policies, where's that learning going or where's it coming from and what is your brain doing? Is it just going through the policies and procedures, or is it alive with curiosity?

Jan Goings:

I know policies and procedures do have some certainty to it, but I imagine being curious, people have to be open to uncertainty and ambiguity. Would you say that?

Sara Vank:

Absolutely. Curiosity is the opposite of certainty. It can lead to many different energies for projects, amazing things like creativity, ambiguity, insight, reflection, and all those experiences can be reflected in joy or regret, but it involves learning and changing and growing.

Jan Goings:

Giving your reflection here, this brings me to this Curiosity Friday idea. Tell me more about it.

Sara Vank:

Well, we wanted a space in place where anyone who is working with people with disabilities, or in any system or service provision, can come and be curious with others, share their thoughts and discuss, and just have a monthly time to be with other curious people.

Jan Goings:

Is that a webinar or presentation on Curiosity Friday?

Sara Vank:

No, this is not a webinar. It is 45 minutes of conversation and space for thinking and sharing. You will come and get to be curious. Curious people feel compelled to learn and find answers and explore the meanings and curiosities that emerge in their work, in their lives.

Jan Goings:

I love that. You mentioned something earlier about the narrative of disability being rooted in stereotypes and devaluation. Is this curiosity conversation centered only on disability, or our broader service systems?

Sara Vank:

It's broader. I think it's anyone who's working within a system in a service-based institution. There will always be challenges with systems and in institutions, but we need them, because often these systems and institutions are based on policies, based on certainty, because it implies certainty will solve the problem. But these problems continue, and if we are allowed to grow our curiosity in the roles we have, we can evolve and grow within these systems and services and be responsive to the needs and changes that need to happen.

Jan Goings:

Absolutely. I love that. Why not extend an invitation? So, want to invite people to come and be curious with us?

Sara Vank:

Yes, absolutely. We are inviting you to come and be curious, be a curious thinker, and if you are getting this invite, we want you to come think with us.

Jan Goings:

Okay. Join us for our first ever Curiosity Friday on July 7th, at 10:00 AM.

Sara Vank:

Jan, thank you so much for being curious with me.

Jan Goings:

Absolutely. Thanks, Sara.

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Robbie Jennings Michels:

There's an epidemic of loneliness in the United States. Isolation is rampant, especially among the 60 million Americans – that's one in four of our neighbors – with disabilities. And despite the fact that we're vaxed and boosted and cases of COVID are on the wane, US Surgeon General Dr. Vivek Murthy shared yesterday that the physical consequences of not being connected with others can be devastating … 29% increased risk of heart disease, 32% increased risk of stroke, and a 50% increased risk of developing dementia. Those stats are even worse for people with disabilities.

The CDC reports that chronic loneliness increases their odds of death in any year by 26%, and that is one stat that Mitch Haralson, the executive director of Starfire, does not want on his watch. I'm Robbie Jennings Michels, and I'm here with Mitch as we celebrate 30 years of working alongside people and families with developmental disabilities to, as we say, become “named and known” in our community by developing confidence, sparking connections, and nurturing relationships based on common interests.

Mitch, what are some of the ways that Starfire is seeking to break the barriers of isolation or fear or just basic lack of awareness experienced by people with developmental disabilities to fulfill Starfire's mission of becoming a more inclusive world?

Mitch Haralson:

Robbie, thank you so much for having me on. I'm excited to be here. The stat that you read is staggering and upsetting. What we're trying to do at Starfire is make people named and known, and in doing so, try to find kind of tricks of the trade inside of a community to help people come out. To be outdoors, to be seen, to be recognized, and to be heard.

I see one of the worst things that happens to our communities or that has happened over the past 30 to 40 years is the attached garage. Just hit the button, hit the clicker, the garage door goes up, you pull your car in, you hit the clicker again, it comes back down. You don't have to see your neighbors, you don't have to talk to anybody. They stay over there and you stay over here.

What we're asking people to do is to be bold, to be brave, and to park in the driveway. Something as simple as just parking in your driveway. Wave to people. Use the front door and to talk to your neighbors, get to know them, recognize them, and just make friends with the person walking their dog. Walk your dog. How do we get out of our home speaking to somebody recognizing their gifts and sharing yours? So what we're really trying to do is to inspire people to take what we've coined as eight seconds of courage and go and talk to somebody. If we're able to just wave at a neighbor to say hello, I think we have the opportunity to really make some noise in our community and make some friends.

Robbie Jennings Michels:

Yeah. Breaking down those fences. You are spot on. When Starfire began working with young adults to discern interests, to discover and share gifts so that they could develop identities beyond disabilities, Starfire realized that maybe this work could start even earlier with families of children with disabilities before the hurt, before the fence, before the isolation set in. Mitch, changing the paradigm and the patterns of bias is tough work. What motivates you and why do you think this work is so important?

Mitch Haralson:

I think the first thing that's kind of jumps out at me in that question is some family members that I have, both of them have since passed away. Nathan and Jackie were cousins born with disabilities. So I got to know them and I got to fall in love with them and see their interests and their passions and participate in their lives and ask them and their families to participate in mine and in my family's life. And so that was a gift that was shared with me and my family to be able to see them, and we all want the best for our children.

And so when Starfire kind of crossed over in age groups and went from adults to late teens, early twenties, and now we're working with the spectrum of ages, it really gave us the opportunity to see, let's break the mold of what the cycle is going to be, of what the system does, rather than try to reverse the hurt that a family is feeling and has felt for the last 20+ years is to give families a different toolkit to start the path on a healthier route.

And it's been incredible to watch young families and to watch these young kids grow and develop and prosper, but to see a different outlook on their face of no, my kid is known in this area. I'm not known as the family with disabilities. We're known as the family that does the park activities or the movie nights or the splash pads.

Just recently we did a hockey clinic and it's so amazing to see 60 plus kids and everyone there is an equal, right? Everyone there is new or new-ish to this beautiful game. Everyone is coming into this with this aspiration of having a good time and not having a good time because it's a disability outing. And so it's amazing to see these new visions and these new aspirations for these families and to have the aspirations realized, it's beautiful, it's touching and it makes you want to go and do another one.

Robbie Jennings Michels:

That's fantastic. Those life moments that are made possible by changing the vision. The toolkit that you talked about, it's really necessary and so needed. As we talked about earlier, we know from the Surgeon General's report and the CDC that the impact of loneliness is devastating. There's also a terrific study that's been conducted by Harvard for the past 85 years that's studied the lives of three generations of 750 people. And the one factor that stood out for their health and their physical and mental health and longevity was really interesting. It wasn't career advancement or exercise or a healthy diet. And while those were important, the one factor that stood out was the ability to connect and maintain good relationships.

So Mitch, with about 150,000 people here in our region living with a disability, it feels as if we're at a critical juncture to drive sustainable transformative change. How is Starfire working to meet both individuals, people, and families of loved ones with developmental disabilities and organizations too? How are we working to meet both sets of people where they are?

Mitch Haralson:

It's amazing when an organization such as Harvard is able to do a longitudinal study like that. The rest of the world had a snapshot of this, of when the world shut down. COVID hit and it hit hard. We anticipate, oh, this is going to be a kind of paid three week vacation. And then 18, 24, 36 months later, we're still affected by this. And we've all seen and experienced what it's like with that isolation, that loneliness and it takes a toll. That is the day-to-day of individuals with disabilities of families that have a disability affecting them.

And so like you said, there's thousands of people in our community that are experiencing this isolation, this loneliness. So what we're trying to do is we're trying to go out into the community. We're trying to talk to organizations, to community groups to say, "Here's how we think we can make the greater Cincinnati area, we can make Ohio, the tri-state." We're working in Indiana, we're working in Massachusetts, we're talking to people in Minnesota and we've done work in Colorado. We're reaching and we're stretching, and we're being able to take this opportunity to talk to people about what a connected community is.

This summer in September, 5th through the 7th, we're doing what we're calling A Connected Cincinnati. How do we make our communities a little bit more connected? It's about really seeing the individual and individuals for all of their gifts and who they are and what they bring to the table. So we get out into the community and we talk to individuals, organizations, and we put on these educational experiences, the trainings, to teach people what they can do and how they can help.

Robbie Jennings Michels:

Geoffrey Cohen just published a book called Belonging: the Science of Creating Connection and Bridging Divides. In this book, he says that belonging may feel like a comfortable but inessential luxury, but he also shares what Starfire has known for a long time, that having a sense of belonging has potent, wide-ranging effects. We all know the sting of feeling unwelcome, feeling excluded, is experienced in much of the same way that physical pain is and feeling like we belong is critical to our wellbeing. Mitch, how does that translate to our work?

Mitch Haralson:

If you don't see or feel that sense, what do you have to get out of bed? What motivates an individual to make that connection or to try? If you're knocking on doors and no one's answering, then it's really difficult to knock on that next one.

So our hope is that by way of trainings like we're having this summer with Dr. Allison Lourash and Indigo Bishop is to teach people that they matter and that they too are an asset in their community. The connection is so vital. It's heartwarming when one is made and it's destructive to a family when they think that they lose it. We want to continuously encourage people to get out of that anxious location of, "Will they see me? Or we're the disabled family or the family with a disabled child on the block." We're a person first. How do we help them identify as that and to share their gifts with the community? Hearing that a study like Harvard is continuing means that the need for this information and this data still exists, but it also means that people are focusing on it. And that's what I want to look at and to take away, is that this is still important and this is still a problem that we continuously need to work on.

Robbie Jennings Michels:

I couldn't agree more. One of the takeaways from that Harvard study was an article in the January 14th issue of the Wall Street Journal, penned by Dr. Schultz and Wallinger. They said that the feeling of loneliness is subjective, but there's biological roots as well.

We as humans have evolved to be social and the biological processes that encourage social behavior are there to protect us. When we feel isolated, our bodies and brains react in ways that are designed to help us survive. The feeling of loneliness, it's kind of an alarm ringing in the body. And at first its signals may help us, but imagine as many of our cohort do live in a home with a fire alarm going off all day because of that loneliness. And if you could imagine that you start to get a sense of what chronic loneliness is doing behind the scenes to our minds and our bodies. And Mitch, I think that that's a big part of what Starfire does in connecting family mentors to families who are beginning their journey. Can you talk a little bit about what it is that family mentors share with families and how they step into the space? Are there some commitments that help them do that?

Mitch Haralson:

Great question. So loneliness, there's no scale. It's not Fahrenheit, it's not Celsius. There's no measuring stick to say, I'm “x” lonely. What we're asking these amazing mentors that kind of hold someone's hand as they start, finish one of our family projects, is to have these honest conversations of this is difficult and I recognize it's difficult.

We have what we call four commitments for community building. One, discover your community's gifts. Two, create something that belongs to you and your neighborhood. Three, grow connections. And lastly but not least important is look for joy. We're trying to focus on the good.

I'm an optimist. I always see the cup half full. I had a friend once that, oh my gosh, he was difficult to be around because he was such a pessimist. I told him once like, "Man, your cup is half broken." Whereas I think when I'm in that difficult place, my cup is waiting to be filled and is looking for that opportunity. So we're asking these families to help the ones that they're working with, that they're mentoring to find joy, to make those connections.

And when you say, "I know what you're going through because I've had to make these same connections," it gives a different air of validity, of sincerity, of honesty to say, yeah, this is difficult. There's a handful of things that we try to prepare a family in and around that are uncontrollable. We want to do a project outside. What if it rains? What if it snows? And so we're trying to build in some contingencies, but when we discover the gifts that we have and that our neighborhood has and we create something that is for our community and we have those connections and we're looking specifically for joy, the projects, they're amazing. They're absolutely fantastic.

Robbie Jennings Michels:

Do you think that the business and nonprofit community has the tools they need to help make sure, especially in this hybrid work environment.

Mitch Haralson:

I think that they say, "I have no malice in my heart. I want to do the best I can." But a friend of ours, a friend organization, Interact for Health, they had a survey for some of their partners in the region and said just barely above 60%, I think it was 62%, said that they felt that they needed more information, they wanted more help. I would round that up past 80% to really say, "We need help. How can we help? What can we do?"

And so we'll go out and we'll do that training for you in person. We've done hundreds of them on Zoom now by way of the education of the pandemic. But we're trying to get out into the community. And for a huge community partner like Interact for Health to tell us that people need this assistance, we want to be there for that call and we want to help whatever organization and anyone that needs that assistance and we're happy to do it.

Robbie Jennings Michels:

So who is Starfire today? What's our value proposition and for whom?

Mitch Haralson:

If you know some of our history and you want to know who we are now We have to go back 30 years. We turned 30, I think we look pretty great for 30.

Starfire came from Campfire Girls, which is basically a competitor to the Girl Scouts. Fortunately for us, they weren't selling cookies or their cookie business didn't take off. And so when they closed, it was turned over to an organization, a number of families working with individuals with disabilities. And so we blossomed from there and we've had 30 years to learn a lot, to touch tens of thousands of lives and to be touched by tens of thousands of lives.

Today, we're able to be pretty agile. We're able to get out into the community, we're able to travel, we're able to Zoom, we're able to get where the individual is or the organization where they are. We're able to meet a family where they are. I think some of our value that we bring to the table is we're trying to respect everyone. And when we see everyone, we mean specifically the family. We're trying to recognize and help them identify your time is worth something. I think my time is worth something. And so in asking them to make these big leaps and to do one of these family projects, and it's not always about the end result of, "Hey, all these kids learned and fell in love with hockey." We made friends, we made connections in the community, and now we have these connections.

So what we're asking people to do is something hard, something awkward. And in doing so, we want to pay them for their time. And so we give them some equity funds on the front and backend as well as some mentorship from someone that's done one of these projects before. So we're giving them kind of like a nano or a micro grant to put that investment into the family and into their community. With some of these budgets, they can pull off some amazing, amazing projects. And while it'd be amazing for them to use all of this money to go to your favorite barbecue place, what we're asking them to do is to purchase infrastructure. A cooler, tables, chairs, a tent so that they can really replicate this. They can do it again next year. It can be an annual event. And we're really excited about how they're doing a second and a third and a fourth event because they have the infrastructure, because they've had that barrier removed and they're able to continue to be named and known in their community for something other than disability.

Robbie Jennings Michels:

Thank you. This year, marks Starfire's 30th year of service, which is no small feat for a small nonprofit. Starfire's been blessed to receive funding from many charitable foundations, from Dater to Pfau to PNC, Greater Cincinnati Foundation, Schmidlapp, Hauck, and Wohlgemuth Herschede foundations at Fifth Third, Hubert, Haile, McLane, Ignite Philanthropy, Schott and Wyler among a few, along with the Ohio Department of Developmental Disabilities and an incredible number of visionary and philanthropic folks for which we are most grateful. Mitch, what does Starfire need to do more of this work, and what's on tap for 2023?

Mitch Haralson:

So 2023, we turned 30. I gave the charge asking staff and everyone to help us pull off an amazing year of 30 events. People got a little anxious with such a large task, and we're going to do it. It's amazing. We have some really big events. We're going to be able to be the partner of the match for FC Cinci. We have the Zoo, we have the playhouse. We're doing some really cool things. So part of my ask is to participate.

What the community can do is to recognize there's a need in their community to talk to a neighbor. Help yourself be named and known, and help your neighbor name themselves other than the family with a disability down the block. We can work with your organization, your employer, your community group, and do a training to see what you're doing and how we can make it a little bit more equitable and inclusive for everyone. And so please look us up online, Starfirecincy.org/learn, and you yourself can come to a group, can come and sit in on a session where we talk about designing your community with more intent and hearing the story of a family after they've completed their family project. We'd love to invite you down for any and all of the above.

Robbie Jennings Michels:

Yeah, that's fantastic advice. Have conversations. We at Starfire know that having a sense of belonging leads to flourishing in every environment, and seeing your gifts being received can really let you know that you belong. Mitch, how can our listeners enjoy this sense of belonging? How can they best get involved with this work?

Mitch Haralson:

Invite people into your world. When people invite you, accept and learn about someone else. So my ask is to be gracious and accept an invitation to learn about another family, to learn about another individual. Coming out of COVID, and we're technically a year out, but remember. Remember how lonely it was at the height of COVID at the beginning and the middle. It was a difficult time. Continue to remember what it was like and break down those barriers so that we can have more conversations, so you can learn about other people. And then in turn, listen.

So please check out our website. We have an event for everybody. Come on out and just learn what we're doing. If your organization is looking for a training around inclusivity, DEIA, there's so much to do in your community and your organization and we love to be a part of it.

Robbie Jennings Michels:

Yeah, that's awesome. Hey, you talked a little bit about the conference in September. Tell us who Starfire is bringing to town for that experience.

Mitch Haralson:

So we're really excited. September 5th, 6th and 7th, we're going to be down at the Columns in OTR. So we have two experts in asset-based community development. So we're bringing in Dr. Allison Lourash and Indigo Bishop, two giants in the field to talk to us, to walk us through what it means for us to become an asset and to recognize what does our community have, how can we fully take advantage of those aspects of your neighborhood, of your street, Dr. Lourash and Indigo Bishop, they're going to sit down with us on a personal level and help us really learn what it means, really help us focus on our part, and what we can do in the future.

Robbie Jennings Michels:

How will Starfire wrap up its 30th anniversary year?

Mitch Haralson:

This is an exciting one. So I want to wrap up our 30th, basically kicking off our 31st. So we're going to be down at Knox Distillery in November to celebrate this amazing year, to talk about all of the cool things that we've done, all of the amazing projects and communities that we've been able to touch and to be touched by them. It's going to be amazing. So you can go to our website, to our events page, sign up and start the welcoming in of year 31.

Robbie Jennings Michels:

Thank you so much. And it sounds like Starfire has a wonderful year planned from the Asset-Based Community Development Conference in September to the annual event on November the ninth in OTR at the OTR StillHouse Knox Distillery to lots of fun things throughout the calendar to meet some people and get involved. So I thank you for sharing all of that. Listeners, please visit our website, Starfirecincy.org. Mitch, thank you so much for sharing your thoughts and your vision for this year and beyond.

I’m a big fan of Kim Hauck. She’s the director of the Ohio Department of Developmental Disabilities, and she and her team make a difference in our world, every single day.

I opened my Cincinnati Enquirer on Monday and was elated to read Kim’s editorial, How you can show support for people with disabilities.

There’s a PDF of the Enquirer article below (no link available for the Cincy version, sadly BUT there is a link to a version published in the Columbus Dispatch.)

I love this piece for two reasons:

1. The mind/word shifts she describes are spot on! Plain language, remembering that people with disabilities are people first, supporting businesses for which equity and inclusion are just part of their DNA. All good.

2. The clincher, for me at least, is this sentence: Making our state more inclusive and accessible starts with me and you. No truer words ever typed/spoken :)

A couple of weeks ago, Starfire visited two cemeteries to commemorate Disability Day of Mourning. Attendees were asked how they felt about the visit, and Katie Robinson from Central Ohio, shared:

Biggest difficulty of being a multiply-disabled person is not about access, like getting on a bus ... it's society's views on disability that stems from the mindset of this institutionalization or the medical model of disability that perpetuates that there's something wrong with me that needs to be fixed."

Take a minute to listen to the podcast series, Unnamed & Unknown, share this story, infuse inclusivity into your day/week/month/year/DNA, and if you can, support our work to build a more inclusive world alongside people with developmental disabilities, one relationship at a time.

On March 1, Starfire marked Disability Day of Mourning to remember those with disabilities who died at the hands of parents and caregivers.

We returned, for the fourth year, to Orient, Ohio on the grounds of the former Orient Institute for the Feeble Minded; we also visited the cemetery of the former Longview Asylum in Cincinnati.

We remember this day because, offers George Santayana, “those who cannot remember the past are condemned to repeat it."

These are the voices of the team that traveled to Orient.

Trigger warning: Their comments are honest, raw, and can be alarming:

Tim Vogt: Behind me is the cemetery. So, if you look, you'll see, before that tree line there, and beyond that tree line, you'll notice divots in the ground; if you want to pay attention in those divots, you can move some of the grass away and some of the leaves away and you'll see stones with numbers on them. So, just to give you a lay of the land: We started this just as a way of remembering the day itself as the Disability Day of Mourning. It was started by the Autistic Self-Advocacy Network, and they wanted to mark people with disabilities and commemorate them who died at the hands of their parents. What's known as filicide. Bridget and I in particular know a few people who have died at the hands of their parents, and their parents died at their own hands afterward. So, we felt like honoring that was perfectly fine. But we also wanted to expand it ourselves, and just think about people that died at the hands of caregivers.

We felt like looking back at ourselves as a service providers, looking back at ourselves as a society, as a culture, was an appropriate and powerful way to approach how to do something different, how to build a different kind of future. We particularly know a few people that used to come to Starfire's programs that had disabilities. One man spent his whole life here. One woman was dropped off here at the age of six, and she talked about how horrible it was to just sit in a room all day. A man who didn't really know who his parents were, said his teeth were yanked out because he would bite himself. So, the things that happened here at Orient Institution are things that we just want to remember. So, we started visiting and what we noticed was well over 1,000 graves that have no names. For us it's not necessarily about beautifying a cemetery. If we got a bazillion dollars and tried to figure out how to make everybody have a headstone with their entire history known, that would be one way to go about it.

But our concern is that we could shake the dust off our hands and say, "Well, we're done here," and go back to business as usual. We think that this cemetery, and others like it, represent a metaphor for how human beings with disabilities still struggle to be known, still struggle to be known as individual people with individual stories and capacities and possibilities. Keep in mind that the story's not done. That it's about noticing this and then saying, what do we do out of this? So, if somebody wants to spread flower petals, you can do that. We have a few tiny garden spades, if you feel like you want to get your hands dirty and clean up some stones. There are a few cards that our friend and colleague, Nancy and her son, Steve, they wrote a prayer about being named and known. So, lots of people, lots of options of ways that you can spend your time, wander and look at the graves, feel it. All right. Does anybody have any questions? Cool. All right.

Kenny Whiteley: I'm Kenny Whiteley. I'm from Lancaster, Ohio. I work for the Perry County Board of Developmental Disabilities, and I work a lot with training people with disabilities, training people that serve disabilities. So, I'm part of the system. I need to know what the past is to know where we're going, going forward. I'm a very empathetic person, so it's really hard for me to know what limited options that people today have, and what even less options these people had.

Being here today, I was talking over there, I don't want buried in the ground myself. But I had a choice, in that these people died over here and somebody brought them out here and made this choice for them, but we couldn't even acknowledge that with a name. They say that you die twice. They say you die when you die, and they say you die the last time that someone mentions your name. So, I don't know. I'm very affected by today, and I think I'm taking a lot of this away with me, but in a good way. I've got to find a way to put this energy to use.

Pam Whiteley: Pam Whiteley is my name. This is a great reminder as to why we do what we do. There's just a lot of frustration. But coming and doing things like this, it just, I think, keeps it real and keeps it fresh as to why we do what we do every time.

This is my second year coming, and the first was so jarring and shocking. So, this year we're doing two different locations with the hope of not only remembering individuals, but also trying to have that look back on why things were done the way they were, and how we can prevent similar actions, and respect the individual. All right. So, this is Howard Reed. He was born on May 6th, 1914, and he died on December 17th, 1969. Who was Howard? He was a brother. He was a son ... and why was he here? Why was he put here and was he respected? What could he have given [to] more people? We're, in the most respectful manner, unearthing headstones, not digging them up, but digging the dirt off of them, exposing the name, exposing the life that was here. That's the goal here. That's my goal.

[Attendees begin to read aloud inscriptions from the graves…]

Kenny Whiteley: George Dudley, January 15th, 1910, March 6th, 1973. May Lewis, January 14th, 1918, March 11th, 1973.

Mitch Haralson: Oshi Williams, July 14th, 1923, to November 18th, 1969. So, at the tree line, it changes from names and dates to numbers. So, I'm interested to know why. But it's just a stark difference in, I think, respect, quality of stone, deliberate nature of the layout. It's just the stark reality of, here's where we stopped caring.

Pam Whiteley: Unnamed, 381.

Simon Buehrer: Unnamed, number 474.

Pam Whiteley: Unnamed 353.

Simon Buehrer: This one's unnamed. 445. I'm going to scrape it. It's like a scratch and reveal. It's [just] how long it's been here. 399, again unnamed. I'm Simon Buehrer, and I work for OCALI in Columbus, and I'm here on the Disability Day of Mourning to learn how to become a better human being. OCALI stands for the Ohio Center for Autism and Low Incidents. So, our goal is to help build opportunities for folks to experience a high quality of life throughout their life. I'm muddy and I'm glad, because it feels like this is work in the earth, which I think gives it more of a weight.

I came here to learn how to be a better human being, and to try to bring a sense of responsibility and reverence. I mean, I feel it deeply. You can feel the physical sensation of being here with the wind, and reflecting on the fact that this was a human being with nothing more than a number to mark their passage on this planet. Yeah. What do I feel like? I guess I feel honored to be a witness to this, but also just the weight of this experience. Like I said, I came here to learn how to be a better human being, and I think part of it is a responsibility that we all have to being a part of a community. What that means is making sure that everyone has opportunity, everyone has the ability to be fully present in their own life.

Bridget Vogt: This is a clear task. We can all feel good about. Like, well, I know I did that, versus when we look out beyond this space and this time and the history, it is a little less clear what to do to make the world better for people with disabilities. So, I think that's somewhat of the draw of the action, and the clear cut. We all like clear plans, and the rest of the world is just not as clear when we leave this space. But I guess the hope is just stay motivated by this, so that this doesn't happen again, or it doesn't happen in a way that it happens now. It looks a little different, comes in different packages, but it's still happening.

Katie Robinson: I am Katie Robinson. I work at OCALI and the Accessible Educational Material Center. I'm here today as a disabled person to honor my own community, and a bit of my own history, and hopefully highlight some of the history of ours that is essentially hidden, and bring it out and make people look at it because it's the only way we can do better going forward. It's a piece of history that we're just not so far removed from.

I was born in 1990, and my parents were told to institutionalize me by an ophthalmologist. To know that these are my people and that they suffered in such a way, and they've been so dehumanized to be a number, is difficult. We're not there yet in terms of being equal, but I've been able to do things that the person here probably couldn't have dreamed of. I'm proud of the disabled advocates of yesteryear, who gave me those chances. That includes, I feel connection to these people. These people are part of my history and part of that push for change.

Unfortunately, many of them gave their lives for it. It feels good that there are able-bodied people who are listening too, it's not just disabled people trying to get others to listen, that this is our history that's not taught in schools. This is our history that nobody talks about, or those people. It's a “those people” problem, when disability is not a problem, it's part of a person and who they are, and it's okay. The atrocities committed to people when we can “other “them, we have things like this happen. If we can step away from that othering of people, humanize people better, we can be more removed and not do things like this again. In my lifetime, we still have had that mindset of, those people go away, those people go to other places and they're not part of society. I was very underserved in a public school until I was in sixth grade, and I did have to go away. I went to the state school for the blind, because my public schools didn't serve me properly.

While that's not institutionalization, I should have been able to be better served in my community and I wasn't. I would say the biggest difficulty of being a multiply-disabled adult now isn't really as much access issues, like being able to get on a bus. It is society’s views on disability that stems from the mindset of this institutionalization, the medical model of disability that perpetuates, that there's something wrong with me that needs fixed. When disability can be a piece of human diversity, and I have a perspective to offer that others may not have, and it's not something that should be erased from me. But the preconceived perceptions of disability and the lack of resources that should be available to disabled people to be independent, is really my struggle day-to-day, like accessible housing, I can't afford an accessible house and I'm going to be fully paralyzed at some point in my adult life.

The preconceived notions that people have when you walk into a job interview. My disability is very visible. I've been perceived as inadequate or not as qualified as soon as they see that my eyes don't track together. The public perception that you can't live a good disabled life. I've had my own blood, my own family tell me that if they were me they would've killed themselves. That's not a testament to my strength. You just do what you do. But when people say things like that, they seem to think it's a testament to saying how strong and great you are. But it really says that, I can't perceive living a good disabled life. That if I was you, I couldn't live a good life.

I used to have no confidence, because if people tell you that you're nothing for so long, you believe it. Some of my confidence can be faked, but some of it is genuine. I have to present a front of having it together and competency, a little more than somebody able-bodied may have to do, because I know I'm representing my whole community, including these people here and those living and those who right now don't have a voice or a way to communicate with you, to talk to you. I represent myself and I represent them. If you're passive and you're disabled, you're screwed. That's really what it comes down to.

Best action, honestly, talk to more disabled advocates. Consume media created by disabled people, including their own memoirs, their own books. Listening to disability advocates who they themselves experience the life. You can be parallel to a disabled person and be empathetic, but it's best to hear about the experience from the person living it.

There's going to be uncomfortable conversations. I've had uncomfortable conversations with people. People may not want to confront internalized ableism. From birth, our community, our world, is taught that disability is bad, disability is life ending. There can be some uncomfortable conversations about unintentional ableism, or admitting that your mindset may need to shift on your perceptions, or that maybe you've said something wrong and that's okay. It's part of the human experience, is we should be learning and constantly changing and growing as people daily. We're not meant to be static, we're meant to be dynamic. So, to be open and to be willing to listen, and be able to work together. Working together, we can remember this part of history and we can unpack the mindset that continues in people that justifies things like this.

Tim Vogt: Thanks for your time today. We always close with a little reflecting, and as the spirit moves, and then we'll have a few words after that. So let's just start with what's on your heart, what's on your mind, what you're thinking about, what it meant to you.

Katie Robinson: I came out as a disabled person to pay homage to my own community and our history. It was moving. I mean, it's moving to see able-bodied allies that care too about this history, and want to preserve it. But it's moving to see a number assigned to a life, and nothing more. When they had a whole history of likes and dislikes and things to offer the world. They were a light, they were a light in the world that was reduced to a number.

Pam Whiteley: Katie said a couple of times over the last hour that it seems like this is almost ancient history, thinking about 1800's, really early 1900's, but it happened decades ago. It happened a decade ago. It's still happening now. These are just reminders that we need to not take steps back.

Tim Vogt: Two things are striking me today. One is, I have a friend who passed away last year that worked to bring people out of Orient down to Cincinnati, and find places to live. Every time I'd talk about this place and our visits here, he would call me up and he'd say, "Remember, Tim. Good people worked there." So, it's making me think about good people and what that means. I don't really have an answer for it, but good people buried these people without a name apparently. Good people ran this place and performed some pretty horrific acts on people. I'm trying to reconcile what that means for good people who say they're good people today.

The second thing that's touching me is the land is scarred to a certain degree. You can see the divots, and as we dig around the stones are being swallowed up. But we're doing healing work for our ancestors, as y'all pointed out. Another one, one more, another one, one more, which is the work of the future.

Take care of yourselves. There's lots of ways to do that. If you want to talk to somebody, grab them before you leave and just say, "Can I get your number, your email?" You can talk, hold each other, human touch, human connection is the antidote to human disconnection, which is what we think this cemetery represents. It's going to hurt, I think finding ways to make it better will help you. Commit yourself to good work, as most of you are, and that's worth it.

From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.

From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.

Hi. I'm Robbie Jennings Michels with Starfire. This is the third of our series on the Disability Day of Mourning, which is March the 1st, and the fourth consecutive year we are recognizing this day. Disability Day of Mourning is held annually to remember human beings with disabilities who were victims of filicide, people who were killed by their mother or father, and we use this opportunity to remember those killed or mistreated by others responsible for their care at institutions. Institutions and places known as asylums, in our backyard and yours, places where many people with disabilities died, and they died unnamed and unknown.

I'm talking with Tim Vogt, who leads our Learning Network, family mentor Nancy Fuller, and family leaders, Cassandra Clement Melnyk and Nestor Melnyk. Nancy, Cassandra, and Nestor are all parents of people with developmental disabilities and have worked with Starfire to launch family projects within their own communities. Starfire provides family mentors and money to help families like Nancy's and the Melnyks' share their gifts, build community and spark connections. Welcome, and thank you for being here today.

Let’s start with a quick recap of our first 2 sessions:

Tim talked about how he and his wife and coworker, Bridget. heard stories, really sad stories, of the care delivered at places like Orient, which is just south of Columbus, Ohio. Graphic, alarming, choking stories, but truthful ones. Stories that aren't shared for the macabre, but rather for reconciliation because, well, those who can't remember the past are condemned to repeat it.

We talked about the impact of those stories on Tim and Bridget, hearing that someone was locked in the pipe room, that another one's teeth were removed because he was a biter. And as horrible as all this was, it drove a desire in Tim and Bridget for more learning, which they did through relationships and documentaries like Christmas in Purgatory and Willowbrook and Off the Cement Floor, and you can find links to all of those and other resources on our website.

And all of this culminated in a trip to find the cemetery at Orient where hundreds, if not thousands, of people were buried, and they were buried as numbers. And we heard from Nancy and Cassandra and Nestor, who went back to Orient with Tim and Bridget. Cassandra's comment about the fact that human beings were placed at Orient in her lifetime when she was in high school, not 100 years ago, was eye-opening. Nancy found a cemetery in Cincinnati, the former Longview Institute, and she said she and Tim found the grounds sadly familiar. Quiet, cold, no gravestones revealed.

Nestor shared that the tools they brought to remove dirt and brush from those numbered and sometimes unmarked graves, that those tools were breaking. And it was a metaphor that begged the question, are there no solutions to being unnamed and unknown? And that seems like a really good starting point on our journey along the road of reconciliation this afternoon. I want to throw it out to the group. Why is being named and known so important?

Nancy: From my standpoint, being named and known is so important, particularly having a son with a disability, because, as you look back in this history that we've just viewed, we need to honor the people who weren't named and known by doing better because we know better now. And so my efforts and my family's efforts, along with Starfire, is really to give purpose to my son's life, the purpose that many other people weren't granted.

Cassandra: The reason that named and known is so important to me is that everything that I've learned about people and about what people notice and people with disabilities, and I always come back to social capital, whether you have artistic ability or you're doing some kind of job that's interesting, we are known by our work. People with disabilities are often known as the person with the disability. And what I've learned from Starfire is how to create social capital for Troy, how to improve his social capital. In our neighborhood, everything that we have done is so Troy is named and known, and everything that is in our hearts and everything that we tell our neighbors is to make sure that Troy is named and known in this neighborhood that he lives in.

Tim: For me, named and known represents how other people relate to a person. It's not like the people that lived at Orient didn't have names. We know they did. Of course, their gravestone doesn't have their name on it, in some cases, which is what we are focusing in on, but really, they were out of sight. They were sent away to a place that was miles and miles, and possibly farther, from where they were born. They were disconnected from the people that they were kin to and they were lost to their community.

They were essentially what we call out of sight, out of mind. If you're out of sight, out of mind, you don't even get to be thought about. And that's the problem with what the institutions and the systems and even today's social services represent, is we take people out of sight and then they become out of people's minds and out of people's thoughts, and then they're lost to people's hearts. They can't belong to anybody, which is what we're looking for. We're looking for belonging. We're looking for connection.

Robbie: What are some of the barriers to that integration, to that connection?

Nancy: I think some of the barriers are just the way that the institutions, companies, the way it's all set up today. It's set up in a way for segregation even today. For example, lots of kids may not be in an institution today, they're not, but many, many times, they spend their days with other people with disabilities.

The barriers are breaking down the current model that's out there and trying to find a new path forward, one-on-one, out in our community. And that's exactly what our family's been working on, and it's a life changer for us.

Cassandra: I think Nancy really hit on something. It's the individuality. We each have our own personalities, and I think what happens in the disability world is everybody is known as the guy with Angelman syndrome, the gal with Down syndrome. Oh, he must have autism.

Immediately, it comes to mind of, "Everybody I've ever met with autism, that's how this fellow is going to be." And we don't do that with other groups so much, and I really think that it's so important to look at people with disabilities as a person, a human being. What do they like? What don't they like? How can I get to know them? That's exactly what Nancy said.

That's exactly what we've been working towards. That's what we want. That's the bright star in our life is, if people know exactly what makes Troy tick.

Robbie: Rather than having someone known by their diagnosis, have them be, as with Nancy's son, he's an awesome illustrator. The art that he produces is beautiful. Oh, and by the way, he has a disability. And I know that Melnyks' project, your project was the Pop-Up Puppy Park, without a puppy, which is fun in and of itself, but the opportunity to be named and known in your community through that project, again, for something other than a diagnosis.

Nestor: This also reminds me of the labels that we put on people. People automatically get categorized with that label regardless of what their social capital is, status, ability. I think back, I'll never forget when several years ago I met Richard Bernstein, who's a Supreme Court judge in the state of Michigan, who's legally blind. People who say, "Oh, he has a disability," and all of a sudden is lumped in the same category as anyone else with any other kind of disability is unfair to him and unfair to everyone else.

Tim: Yeah, it's really a practical question about imagination. How could anyone imagine how to know them or those people or people with disabilities? It's impossible to even imagine that, because it's a nameless, faceless monolith. And so you really have to get to the individual specific personal named level to say, "Well then, what does Troy want? Or what does Nancy want? Or what does Tim want?" How could I know Tim is different from how I could know Nancy, is different from how I could know Troy, and how we show up in the world is so wildly different.

So the more specific forms of imagination we can help people enter into with each other, the more that we can relate, right? It's just impossible to relate to them. You just can't do it. So I think that that's part of it. I really think that our systems, I appreciate that they're out there.

However, they do have financial pressures, and so we have to serve people in groups. Starfire used to do that. It wasn't until we really realized that we were asking people to give up their identities and their social ability to connect because everybody just saw them as Starfire. Everybody just saw them as “them.”

And that was what we were asking people to give up as a condition of getting our help. And that's when we started to walk away from that compromise that we were asking people to make. And we said, "Look, we just want you to be known for who you are." And that means we have to behave differently as a business, as a company, as an organization. And that's one of the challenges we have for the system.

And that's what we saw in the institutions and Orients and Longview, is they were early versions of our system that just simply said, "These people are all alike. We're going to treat them exactly the same," and the endpoint was none of them got a unique opportunity to offer their gifts to the world and be known. So we're slowly evolving as a system, as any company should, as any business should. And we are saying, "There's a better way to do this." And perhaps we ought to lean into people's connections, their unique identities and their neighbors, which is a different kind of support. It's not based on Medicaid waivers or donations. It's based on, again, connection to people around you.

Cassandra: I think it's important to think about, while we are remembering how things used to be, thinking about how we want things to be. We want everybody to have connection. We want everybody to have friends. We want everybody to think of them and to say, "Hey, I saw this video. It reminded me of something that this fellow might like," and that is what makes my heart sing. When somebody says, "This is funny and it reminded me of Troy," that is what happens in everybody's life except it's so rarely had ever happened in Troy's life that when it does, it's just a miracle to us. And the more that I can make that happen, the better his life's going to be.

Robbie: And the more you can help him be named and known, the more frequent those opportunities will occur and those instances will happen. I really liked what you said, Tim, about it's not one size fits all. It's about understanding what an individual wants and what his or her gifts are, and it's about making opportunities for those gifts to be shared. That kind of leads me to my next question: What are some of the ways that happens? What are some of the ways that those gifts are identified and that we bridge those barriers and bridge those gaps? Nancy, you look like you might have some thoughts on that.

Nancy: Well, I could share from my own personal experience that when I did a family project with Starfire and they guided me all the way through, the first step was to say, "What gifts do I have as a mom and what gifts do my son Steve have?" And we found common ground in both liking to do some art and drawing. And the big question was, "Well, what does my neighborhood for my community need?" And then our case, we started doing art projects around our community, and that was our path forward to make connections not just for me, but for my son to also be named and known. And by the way, I got a little named and known myself, so there was no harm done in me getting new friends. I've got now over a dozen new friends, and so does my son Steve, and it's a blessing.

Tim: Yeah. I think it's another version of being known, which is, I remember Nancy, when we were talking about Steve cared about art, he cared about babies, and he cared about faith, and you did too. And we cooked up the idea that a church would be interested in faith and babies and art, and now you all were celebrating baptisms. And Nestor and Cassandra, I remember sitting with Cassandra we're trying to think of ways that we could help learn how Troy could show up. And one of the ideas was that Troy loved to be moving, and we almost came up with the idea of a cart that if his hands were on a cart and he was pushing a cart, that was a powerful way to be in the world and he could move.

And so you all came up with the snack delivery service that was a cool little thing to try out. But again, those are two aspects of knowing somebody, but you only get to know them that way if you spend a lot of time with them and you notice what really is successful for them and feels good to you. Again, like you said, what your family wants and what your community wants. So who needs snacks out there? Who loves babies out there? Those are great questions and there's lots of answers to them.

Nestor: And this reminded me of our Pop Up Puppy Project (PUP) which it was for Troy, but it wasn't about Troy. But the amazing thing about that is not only did Troy build some relationships and people start to see him in the neighborhood and recognize him and wave and say hello, but then also that next layer that Cassandra and I started seeing people that we hadn't met before and living in the same neighborhood for years and not really knowing these people, but the stories that we continue to hear about other neighbors who have met each other through that process. So it's a compounding thing. It's not just a Troy thing. It's not just our children and our families, but it compounds to other people.

Cassandra: The motion behind PUP, which started as a family project for Cassandra, Nestor, Troy and Sophia, it is just baffling to me. I've just become best friends with the people. I will fight forever to continue PUP, as long as people are still meeting people and one day a month they're not lonely or they have something to look forward to. I just think that is the best thing that our family can offer to our neighbors.

Robbie: That's awesome. And with every one of those stories, the likelihood that your children, your adult children, your loved ones and others will not live a life of out of sight, out of mind. They won't, because of the work that you've done to create projects, to take those eight seconds of outrageous courage to let others into your life, as Nancy would say. And I think that's one of the reasons why this recognition of Disability Day of Mourning is so important. It's not just about going to the cemetery. It's about remembering and it's about understanding that this happened, and some instances continues today. And the only way that it doesn't continue is if we recognize patterns and we remember, and that's why we're going. What is the trip to Orient and to Longview, which is now Summit, what is it not about?

Tim: So what comes to my mind, Robbie, is it's not a community service project. It's not a resume builder. It's not something that you can sit in the car on the way home and say, "Wow, that was great. I feel good about this," and then forget about it. It's about acknowledging, it's about self-reflection, and really, it's a call to action. It's a call to change. It's not about the day. It's not about cleaning graves. It's not about standing there and thinking about what happened. It's about moving forward.

Robbie: Very well said. Nancy?

Nancy: I was just going to add that I think there's a healing that needs to take place. And when you look backwards to acknowledge the pain and what was ugly, we want to pivot from that unnamed unknown place to looking forward toward what can we do in our own world, in our own sphere of influence to help people become named and known. And so to me, it's a journey from one to the other and showing up on this day is the first step to say, "Let's look at this truth together, and then let's self reflect on what are my gifts and how can I make this world better so this does not repeat?"

I realized recently that our family project, the Anderson Art Collaborative, which has now become its own nonprofit and its growing and swelling, what I've realized now, that is my reconciliation. Because my dream is to create a space in my community where all are welcome, all are named, and all are known. And that is my work. But what is my work going forward? And it's to create the culture in my community that matters.

Robbie: Okay, so March the first 10:00 AM we're going to, for the first time, visit two cemeteries. One here in Cincinnati where Starfire is headquartered, although we serve and connect with people all around the world, thank you to Zoom. We will also be for the fourth year in a row at Orient. So Nancy, start us off. What are we going to do at Longview?

Nancy: So we'll start with reading and recounting a little bit about the history of Longview State Institution as well as how people arrived at this cemetery. Following that, we have some storytelling to do, and I personally have met four people who knew people at Longview. And I think it's important as we look at the truth, to look at what their experience was on who they met there and what their experience was. And then my son Steve makes bookmarks with prayers on them, and we'll begin to read many of the names of the people that we know were buried in this cemetery. And so I think hearing the names will bring it home and make it real. But then we're going to try to pivot just like we talked about to something more beautiful.

So we'll lay flowers in some vases around the one monument that remains there, and we'll talk as a group about what are some options to continue this healing and restoration. And lastly, we're connecting with new people joining together and that's what this is all about. So we're meeting in this space like-minded people with big hearts, and these relationships may continue in a positive. One day, could you imagine if there were many, many people commemorating this day of mourning across our country with the same intention to look, reveal and move forward? And wouldn't that be a beautiful thing if people around our country could recognize that day and ultimately create a personal challenge to do better?

Robbie: I can't wait. Thank you. Tim, what will happen up in Orient?

Tim: It'll be very similar to what Nancy described. We'll gather at 10 o'clock on March 1st we'll circle up and talk about the history of what the day is and the history of the place, and then we'll let people walk around and look at the graves, and we'll bring some flowers as well. And Nancy's going to mail me some of Steve's prayer cards. Then we'll circle back up and talk about ways that we can commit ourselves to something better in the future. The one aspect that's a little different for Orient is that we want to figure out if there's somebody who's close to orient that would be interested in carrying this forward in future years. We really believe that local solutions are the best solutions to inclusion. So we're inviting some people that are up from Columbus area and central Ohio to join us, and I'm there to connect them to what we've been doing for three years. And my hope is that they would be interested in carrying that forward for that area of Ohio.

Robbie: Yeah, very good. I agree with you, and I think many people do, that local is best from an awareness perspective, and that helps the ground swell and it helps connect people here and in other communities. So I am so glad to hear that. The torch is heavy, but it's not impossibly so.

Nestor: Last time we talked about not having the tools. Sometimes we lose sight of the solution because we're thinking of the big picture. We're looking for that big solution, but sometimes it's just about little steps and small projects. And to echo Tim's suggestion that the visits to Orient should be local, it's that same thing. It's all about people doing what they can do with the resources they have, where they are and who they have that they can affect.

Robbie: We will be at Orient and at Longview at 10:00 AM on March 1. The first directions to both facilities are on our website starfirecouncil.org. Go to our calendar page, look for March the first. There are images and resources and stories, and I invite you to go to that page as well as listen to these three episodes. Thank you all so much.

From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.

Robbie: Welcome to Starfire's podcast, More. We call it More because the work that is done alongside people with developmental disabilities helps everyone realize more, more connections, more friends, more happiness, a more fulfilling life. I'm Robbie Jennings Michels with Starfire, and we're talking with Tim Vogt, who leads our learning network; family mentor, Nancy Fuller, and family leaders, Cassandra Clement Melnyk, and her husband, Nestor Melnyk.

Nancy, Cassandra and Nestor have been involved with Starfire for several years and are parents of adults with developmental disabilities.

This is the second of three sessions we're dedicating to Disability Day of Mourning, which is held annually on March 1st to commemorate the lives of those with disabilities killed at the hands of caregivers, parents, institutions. In session one, which is now posted on our site at starfirecouncil.org, and available via Apple, Spotify, and Stitcher.

We talked with Tim Vogt, who led Starfire's pivot from day programming and then, later, teaching community-building in a building, to our present state, which is teaching community-building in the community.

Tim shared how he came to understand the truth and prevalence and instances of some pretty horrific treatment. And the content you're about to hear describes treatment of people that can be alarming and graphic. But if we don't learn the truth, we can't reconcile the past or heal. Tim talked about how this realization led him and others on a journey of reconciliation. We talked a lot about resources last time, and links to all of them can be found in the transcript section of each podcast and at starfirecouncil.org/event.

Look for March 1st, which is when our group will travel to the former Longview State Hospital Cemetery and to the Orient Cemetery in Pickaway County outside of Columbus.

Tim, you and your wife Bridget, who's worked at Starfire for as long as you have, you take a day to drive to Orient Cemetery. You don’t know that it's Disability Day and you're not doing it as part of a theme. You just want to see and learn more about the place that was an asylum. You and Bridget dig, you find numbered gravestones, and you have a short, but telling exchange with a prison guard. Describe that for us.

Tim: When we got up there and knew we were on prison grounds – the cemetery is in between the two campuses of the prison – we were a little worried that we might be making the prison guards nervous. We weren't really sure what the protocol was for visiting a cemetery. After we were visiting, we kept waiting for somebody to show up, and after we visited, we walked toward our cars.

And as we walked back across the graveyard, we saw a little security guard zooming up to us on a golf cart and we thought, "Boy, this is it. This is where we get ourselves in some real trouble."

He came over and he said, "What are y'all doing here?" and we said, "We're just visiting this cemetery." And we told him we were from Starfire and we said, "We're really just kind of thinking about how to process this graveyard," and we said, "In particular, we're interested in, and saddened by, the part of the graveyard that has people who are buried here that were people with disabilities, and they died here and they're buried without even a name." And I said, "Some of these headstone are just numbers."

And that prison guard got really quiet and then he said something that was really profound to us, which was, "It's still that way."

He said, "The people inside are still just numbers."

We had a good conversation about that common way that we have of sending people away, turning them into numbers, erasing their name, essentially, and just kind of treating them as people separate from us, and we were impressed. Bridget and I were both impressed and moved and touched by the compassion of this prison guard, not only to what we were trying to do, but also to his own role and his own understanding of the prison itself. So it was a really powerful moment for us.

As we were walking away, he said, "Well, I'd like to just invite you to maybe go through the processes next time." And so he did give us the name of the assistant warden, and he said, "If you just call her up and tell her the next time you want to come, it shouldn't be a problem," and gave us her direct line. He was really helpful in making it possible for us to visit, and we were really grateful for having met him.

Robbie: I'm glad to hear that. And how random was that, the fact that you and Bridget were there and you really didn't know that it was a national day to remember. And talk about the providence of that.

Tim: As we were driving back, I remember we were stuck in traffic, and I got an email notification from the Autistic Self Advocacy Network and it said something about marking the Disability Day of Mourning. I couldn't believe it. I pulled my phone out and read the email and it talked about, "Join us in commemorating and marking this day as a day to mourn the lives of human beings with disabilities who lost their lives at the hands of their caregivers."

I always believe the universe moves in mysterious ways, and Bridget and I just couldn't believe that we had actually been there mourning human beings with disabilities who lost their lives and lost their identities, while under the care of the people at Orient, on the actual day that the Autistic Self Advocacy Network and others had already set aside to mark. We didn't even know about that.

Robbie: Yeah, that was definitely kismet. Nancy, remind us how you got involved. You talked a little bit about that during our first podcast, but where did you you start your research?

Nancy: I think where it all started was Tim and I used to do coffee regularly, and one coffee conversation, after he and Bridget had gone to the Orient, he couldn't help but share his experience with me, and I was deeply moved and upset by what he shared and I said, "We need to do something. We need to do this again." He agreed, and he said, "But if we're going to do it again and potentially invite more people to join us, we're going to need to get approval." I offered to call up the prison and try to get approval. I did track down the assistant to the warden and she was very gracious. Once we did connect, she approved us bringing a group of people the following March.

Robbie: And, Cassandra, that was your first visit with Troy and Sophie…

Cassandra: I knew that friends from Starfire were going to Orient on the Disability Day of Mourning. I had heard of Orient and I knew it was the largest asylum for people with disabilities in Ohio. I just quickly Googled to see what I could find out about it, and I found out how it was opened in 1857. The name was the Ohio Asylum for the Education of Idiotic and the Imbecile Youth and, today, those words just sound so hurtful.

And then I saw it was changed. The name was changed, later, to the Institution for Feeble-Minded Youth, which, again, just stabs you in the heart. And then somebody changes it to the Columbus State School, and then it ended up being called the Columbus Developmental Center in 1980, and I saw that it closed in 1984, and that was the year I graduated from high school. And it really struck me so hard that, when I graduated from high school, people like my son were living in a place like this.

My daughter and I decided that we were going to take Troy [son/brother with a developmental disability] on a road trip. It's about an hour and a half away. It's north, so we knew it was going to be colder. You hop in the car, and an hour and a half is not a long ways, but it gives you a long time to talk. Sophia was very interested in like, "We're going to prison ground. Are we going to get in trouble?" There were just a lot of questions about that.

We pulled in, and you can just drive right in, and there was a parking lot there and we met with the other people from Starfire. We got Troy out of the car and he started walking in the cold, cold, windy weather. And Sophia and I were on either side of him, and I remember the group was a little bit further ahead of us because the ground was so choppy and it was also very wet. And then, as we're going up a hill, Tim says, "This, this right here, what we're walking on, these are the gravesites."

I think I knew that there were only going to be numbers, but I think I expected to see more of a cemetery with headstones, and there weren't any headstones at all. We were walking, the bumpy terrain that we were walking on, the divots, the indentations where the markers were, people had died, and the gravesites were just rectangular stones. And you had to take your boot and shove the moist, muddy earth away, and then you could see a number. And Nancy was so brilliant to bring flowers, and she handed flowers to all of us, stems and bouquets of flowers, and Sophia and I thought, we're going to put a flower on everybody's grave. Come to realize, there are hundreds and hundreds and hundreds. It ended up not being a flower, it was a petal. It was a sprinkle of petals because there were so many stones with numbers.

We left and walked back to our car. And, on the way home, I remember so many of our sentences started with, "Oh my gosh, can you believe?" and, "Wow, that was so sad." And then we were so quiet for a while and then, all of a sudden, the end of the ride ended up so much better because it really solidified for us that we had to make sure that Troy, who was sitting so quiet in the backseat now, that Troy was going to be seen. And we knew that he wasn't going to have a life like that, but do people know him? What do they know about him? And we realized, my son, her brother with developmental disabilities, hadn't had any social capital at all to offer to our neighbors and friends. I really see that as the beginning of our journey.

Robbie: Developing and sharing and treasuring that social capital, that's a really excellent point about one of the reasons that we do the work that we do at Starfire and why we commemorate this day. Nestor, I know that, on your first visit, you said that you felt a little overwhelmed. What made you want to go?

Nestor: When Cassandra, Sophia, and Troy went the second year of this journey, and they came back and shared what they saw, what everything was like, I felt compelled to do something just to acknowledge what had happened in my own mind and experience it for myself. It's one thing to read and hear about it, but it's totally different to personally experience that, just hearing about the hundreds and hundreds of numbers there is one thing, but to see it for yourself. And I think what was most powerful to me, at the time, was just the anger and frustration that I felt that these gravesites are still neglected. These people were neglected in life, and they're continuing to be neglected even after they're gone.

Robbie: Nancy, you often talk about having eight seconds of outrageous courage when it comes to building connections and growing in times of discomfort. And I'm sure, when you picked up the phone and asked if you could bring digging implements to a prison ground, that took a lot of courage.

Nancy: Yes, Robbie. After our second annual trip there, we immediately felt, all of us, compelled to do this again. As we talk about how are we going to continue this theme of truth and reconciliation, we're thinking, "Okay, we dropped pedals on the graves," which was very healing and restorative in a way, and we said, "Well, if we're going to do this again, what's next? How can we enhance this?"

It didn't take long to think we were digging with our heels to try to uncover a number. It became very evident, Robbie, to your point, that we needed garden tools of some kind. And I think it was Tim that was like, "Do you think a prison is going to authorize you to bring in things that could be a weapon right next to the gate?" I called our new friend, who was the assistant to the warden, and I told her what a great experience we had and that we'd like to do it again. She said she had to get permission about the tools, and then, that next year, we got to take the tools with us and enhance our experience. And all I would say about that is that I felt more connected with the whole experience by getting my own hands in the actual dirt and turn over that grass to reveal that hidden number. I felt even more connected.

Robbie: Cassandra, did you have that same feeling as you were uncovering, that you had that dirt in your hands and you're thinking, "Wow?"

Cassandra: Yes. I think we've all heard of the saying, you have to dig in and get your hands dirty. And there's definitely a difference than using a boot heel and kicking and scraping with a boot heel than getting down on your knees in the damp earth. What it reveals is 967 or 529, but we knew very well what those numbers stood for.

Nestor: When the three of us went this past year, we realized, as we're driving up, that we actually forgot to bring some implements with us. And we, on the route, stopped at a Family Dollar dollar store, one of these discount stores, and bought some cheap spades because that's all they had.

And, as we're working with them, the handles are bending and the blades are bending because they're not the quality implements that we thought, and that actually was frustrating to me because I felt I wanted to do more and I couldn't, and I felt that even these simple tools were not enough. But it also is what made me realize that this whole issue is more overwhelming than you can imagine. The tools don't exist to truly reconcile this.

Tim: I'm struck by what you said, Nestor, that the tools don't exist. And I feel that frustration because I remember, when we left that day, you were ready to, for lack of a better word, go to war. You were ready to write letters. We were ready to go to the top of every single relationship we had through state government trying to figure out what could we do, right, and somehow people have to be aware, right? And I thought that that was about the best tool I could imagine is bringing in other people's awareness, highlighting the way that this cemetery represents a metaphor for neglect and absence of a community.

And I just want to say that, to tie it back to episode one, one of the people that lived at Orient that I knew, that told me about what it was like to live at Orient, a few years after I started working at Starfire, he passed away. I went to his funeral and I remember being one of about six people at his funeral. The only other people there were a few people with disabilities from his group home and a staff. And the officiant asked if anybody had any words to speak to his life, and no one spoke up. I didn't speak up either. I knew him, but I didn't feel like it was my place.

Now, looking back on it, it's hard for me to believe that I could have been the person to speak up and it's hard for me to believe that I didn't. But that experience, knowing that he went to his grave without people speaking to his life, and that's the part that I feel the same frustration and anger that you feel, Nestor. We still don't have the tools to help people see and be seen. That's everyday fire in the belly for me. We have got to help people be what we call named and known, and that's Starfire's work. That's your all's work as families…

Robbie: … and what is everyone's responsibility, right, is to know the history, to recognize the patterns that, sadly, are still happening, and to be inclusive. And that leads us to this year. This is the first year that we'll tackle two visits on this day. I invite you all to listen to our third podcast, which will air on February 20th. I invite you to look at our website, starfirecouncil.org/event. Come with us, travel to Orient in Pickaway County or come to the grounds of the former Longview State Hospital here in Cincinnati. And, when we talk again, we'll talk about the process of permission and what we'll do on our fourth observance of this day. Thank you all for listening.

For event details, visit our calendar page.

From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.

 This is the first of three sessions about Disability Day of Mourning, held annually to remember those with disabilities who’ve died at the hands of caregivers.

Join us on March 1 as we travel to two cemeteries in Ohio; you can find the details on our event page, March 1.

Nancy Fuller, Family Mentor: My friend Tim and I were starting to make this unusual habit of exploring odd places such as cemeteries. It was kind of a cold, damp December morning, and Tim agreed to meet me at a new location I found on the internet right in our own backyard, and it was called Longview Cemetery. It was hidden behind some apartments.

It wasn't easy to find.

As we approached together, I had the same sinking feeling that we had experienced before. We approached a black iron gate with a padlock. It reminded me of a prison, which is a them that seems to keep repeating itself. What we found on the grounds was sadly familiar. It was quiet, it was cold, and there were no gravestones revealed.

After a thorough search of walking the grounds, we did find a small statue. With a marker, and that only had a number on it, not a name. It was number 768. No one here was named or known.

Robbie Jennings Michels: Welcome to Starfire's Podcast, More. Starfire works alongside people with developmental disabilities to discover interests and ways to share their gifts, to spark connections that break down the barriers of social isolation to build richer, more fulfilling lives in a more inclusive world.

And we do this work through our Community Builder Network, our Family Leadership Network and our Learning Network. In this three-session podcast Starfire Leadership Network director Tim Vogt, Family Mentor Nancy Fuller and Family Leaders Cassandra Clement Melnyk and Nester Melnyk will share some of the history of disability day of mourning, which commemorates those killed at the hands of caregivers.

They'll talk about the importance of recognizing the gravity and the truth of this history, and sadly, the behavioral patterns that continue today. Hopefully we'll learn how reconciliation can lead to healing our culture and the ways that everyone can get involved. So today's session is called Unnamed and Unknown Understanding Disability Day of Morning.

Caution: The content you're about to hear describes some treatment of people with disabilities, and it can be alarming and graphic, but if we don't discuss the history, we can't work together to make sure it won't be repeated.

Tim, please start with talking about why you and Nancy are crashing cemeteries – and why that's so important.

Tim Vogt: Thanks, Robbie. Appreciate that question. It does date back a few years and it starts out of our story at Starfire, which a lot of people listening may know, We started with successful day programs and outing programs, and we were rocking and rolling. This would be from 1993 to 2010, and as the director back then, I started to really understand the patterns of isolation around people with disabilities.

And one of those really formative experiences I had was in talking to people, people with disabilities that were coming to outings. They were coming to our day program and some of them, if they were older, would mention that they had lived in Orient. I can remember a conversation that I had with three people with disabilities and we were sitting down and we were actually on a trip that Starfire had taken.

We were sitting down and, and just relaxing and talking about how great the hotel room was and the pool at the hotel. And these three people started talking about how much they loved it, but also they said the worst place that they ever stayed was Orient. The first guy talked about how he had lived there pretty much his whole life when he was dropped off by his parents and he just said it smelled, it was terrible.

Nobody ever talked to him. The woman that responded to him told us about how she would spend most of her day just sitting in a room by herself staring out a window. And probably the most vivid example was another gentleman that was sitting with us and, and he didn't have any teeth. He told us that he had had his teeth yanked out when he lived at Orient.

I was shocked. I was like, you mean they took your teeth out? And he said, yeah. He said, ‘I was biting.’ And so their solution to that was to yank his teeth out. The first time I ever heard the term Orient as a place that people were living in, it was heartbreaking, you know? And so I started to understand that that was what the general culture would call an an asylum, right?

I had heard ‘asylums.’ You hear it around Halloween time and you hear it in movies and TV shows. But I didn't quite understand what they were and so I, I was like, oh, this is what an asylum was right? In our field. I would start to hear it called institutions and I would start to hear, we moved everybody out of the institution seventies and eight.

So I was really curious about that because remember I was, I was noticing Starfire's pattern of separation and segregation in our programs, and I was starting to wonder, other patterns and that those institutions kind of got me really curious about that.

Robbie: And Tim, it wasn't as if the phrase orient or asylum or institution, it wasn't as if these were far off places. These were here in Ohio. Were there some other instances playing into your learning process at this?

Tim: Yeah, I mean, you're exactly right. As I understood asylums and then I was understanding institutions, I did think of them as places that were far off. I didn't think I knew anybody that was there.

I didn't think that anybody was connected to it. And so to know people, that they talked to that had been from there was really, really formative. I started to study. There's a great book by Burton Black called Christmas in Purgatory, and they snuck a camera into an institution up east and started taking pictures of people who lived there.

And he would take pictures of people with disabilities who weren't wearing clothes or were surrounded by feces and urine. You can see 20, 30 human beings in the same room, and it's where they spent their entire lives. I started to realize how it wasn't just ancient history and it was everywhere. I started to understand that it was like all over the country, all over the world.

There were these places where essentially people with disabilities, kids with disabilities, or dropped off by their parents, doctors would say, here you go. This is the best thing. We'll take care of them from here.

And that really made me want to kind of start to learn more and start to understand. What is the history of our programmatic mindsets and our systems mindsets around disability and our society's mindsets?

Robbie: So you're seeing patterns and you're hearing stories as you get to know individuals with disabilities that Star Fire is working with. You are hearing how they may have experienced these people who are in your life now have experienced horrors. Were there any other organizations here in Ohio that you were learning about?

Tim: Yeah. When the Freedom Center opened up here in Cincinnati, they had a documentary that they showed one night, and it was sponsored by the local Hamilton County Developmental Disability Services Department, which it used to be called Hamilton County MRDD. They hosted a film series and I think the film was called Lest We Forget, but there's also a film series, Off the Cement Floor, which you can look up on YouTube (see link on our March 1 event page.)

It's centered around Apple Creek, which was an institution up in Akron. And I remember going to that film series and watching that, and I was struck by how adamant. parents had been that it remained open. Parents were kind of in the position of saying, look, you've taken on some my child's life for 50, 60 years … What are we supposed to do, right? So I was struck by that too. And I was really motivated by how do we help tell a different story. How do we do work that helps people with disabilities and their families start from a different place than.

Nancy: As a parent of someone with a disability, my heart just aches for parents that didn't have the tools or resources to realize there was another way back then.

Tim: Yeah. Nester, were you gonna say something?

Nestor Melnyk: Yeah. A couple things that came to mind. I do remember that film series and going to that film series and. It's also an example of the times that it was an accepted thing, because there were no alternatives. And I think that's why the parents were up in arms is because there was no other alternative and that was just the way things were. And, and it took some brave set of eyes to go in and see what's really happening. To say this is not. But at that time, there was no solution to change and, and we're still struggling with that. Although at least we now have the mindset that that is not the way to do things. It's interesting that you say that things have changed, but in a way they haven't because I can't imagine having my son live in a place like that and people see things and they know that that's wrong.

Cassandra Clement Melnyk: Because what we experience, Nestor and I, is that we really don't have any outside support for our son, and he is. With us. With me, I'm not working because I can't work … because he goes to a day program for a few hours a day, which isn't even like the, maybe the most ideal thing should we be having people with disabilities go to a program?

And just so I can have a chance to do, something without my 24-year-old son, he does go to a day program. It was very hard to find a place that I thought was acceptable for him. And, and luckily in my heart, there is a place that he likes. And I think that people in general in our society look at us and say, ‘Like, wow, they're really doing great.

They are taking care of this, you know, beautiful boy with disabilities. But the truth is it takes its toll on the parents.

Robbie: And, and it's an acknowledgement that it's everyone's responsibility, which is I think what led Tim and Nancy to start visiting some cemeteries. And it also led Tim to start thinking about what is it that we can do as an organization to help raise awareness and to spark connections. That there is a better way and that there is an opportunity for individuals with developmental disabilities to create an identity exclusive of that disability and to build relationships based on common interests. So, Tim, tell us a little bit about, at this point, you've, you've learned about the experiences of individuals in Starfire’s program, which is still at this point a day program, and you've seen some treatment that, in your estimation, is segregation. And so you want to keep pulling at this thread to figure out where it takes you. Is that kind of how you and Bridget went on to Orient?

Tim: Yeah, I mean, I was struck by what Cassandra and Nestor and Nancy just brought up, which is that the system was kind of selling a solution to parents and families that was asking people with disabilities to pay the price.

And I saw myself in those. And those people that were selling those solutions, I saw myself as selling outings and day programs and I started to see that we were of the same form. So I really started to see the same kind of pattern, and I started to see the same dead end happening for the people that were in our programs, and I felt incredibly lonely.

There weren't a lot of people that were like, yeah, let's tear it down and do something more. Because we didn't have big answers. We still don't. So I started studying not just institutions and what had happened then, but I started studying ways forward. There's a great resource for people who wanna learn about this stuff at inclusion.com.

And it was started by people who were also disturbed by institutional [delivery]. They developed a lot of the practices that we lean on the most. So every year they used to host an annual summer conference almost, and they had the theme of their conference was called Truth and Reconciliation, and I had never heard that term before.

The conference was started and parts of it were led by First Nations People of Canada and they were telling stories of how the tribes of the First Nations people of Canada were colonized and destroyed. And what I learned was to start, we have to tell the truth about what happened, and then we have to figure out how to reconcile that.

And I had never heard that term. But during that same conference, the leaders at the conference had some witnesses, two women who had lived at Huron, which is an institution just like Orient that's outside of Toronto. And they told stories that still give me nightmares. They told about how punishment by the institution staff was to force them to lay on the ground and eat worms.

And that punishment might just be for non-compliance or not following their rules. They talked about the pipe room, which was a little closet where all the pipes were, and that's where people were sent as a form of punishment. And they would spend hours in a utility closet surrounded by pipes, and they talked about how the, when they came back to visit, they could see scratch marks in the walls of people who wanted to get out of that closet that were kept.

Probably the thing that was most distressing to me was one of the women talked about how when somebody would die, they would take them and bury them and she used the term out behind the barn, they didn't have any headstones. And I left that conference and I was so moved and disturbed. And again, I couldn't get it outta my head that we're still seeing people who are just as unknown today out of my programs.

So I came back and I started doing a bit of writing, just trying to collect my thoughts around this stuff. And, and one of the things I found important to write about was my feelings around how our programs looked prettier. But had the same form and substance as the institutions, and I wanted to know if there was a place at Orient where people might be buried.

That's when I decided that I might head up to Orient and check it out myself. I had seen Orient before that, but I had never really stepped onto the ground. I had learned from a person with a disability who I had kicked out of our program for bad behavior. I had done that, and after that person left our program, That person ended up getting, arrested for, for a problem that that person had, and that person went to jail for a couple years. And during the time that I’d kicked the person out and the time that person was arrested, I was learning so much about. My own management of our programs was leading people to experiences like getting kicked out and leading people to these social dead ends.

So I was almost filled with (the sense that) I have to make this right. So I kind of got to know the person when they were in jail and I kind of started inviting some other people to know the person in jail as best that I could do at the time. And that person, ironically and sadly, was sent to what's was called the Orient State Correctional Facility. So the former grounds of the institution in Orient is a prison. And so I drove up on the date that person was released from jail and, and picked that person up from Orient, and I could see the old buildings in the background behind a prison.

So I, I had seen Orient, but I had never actually stepped foot on the grounds (of the cemetery.)

Robbie: And the imagery of the prison is not lost on us, and especially on your thought process in terms of what Starfire would look like going forward. So describe the visit to Orient.

Tim: Well, the first time I went up, I asked Bridget (Starfire Community Builder Network Coordinator and Tim’s wife) to go with me. She's my wife and she has worked at Starfire just as long as I have. We picked a day – March 1st. We had the morning free of meetings and we said, let's make our work today to visit the cemetery at Orient. So we hopped in the car and drove. We held hands as we walked across this field toward the headstones.

The field itself kind of has these little divots, and they were kind of like, you know, in the way you'd trip on 'em a little. And as we got closer to the headstones, we noticed that they seemed to all have the same family name. And we were like, wow, this is weird. And we started to discover that the family names were older, so this would be like 1850 or 1860, and we couldn't figure out, well, where is the cemetery for people that both lived there in the 1900’s?

You know? And we started just kind of looking around. We were pretty puzzled and we, we started to notice that the divots themselves were in a grid that we had walked over top of. And as we walked back from the big ornate, well kept headstones, we discovered that each divot was actually a headstone. So we would see number 19, and then next to that was 20, and next to that was 21. We saw numbers up into the nine hundreds. We counted the rows and the, and the columns of divots, and we came to around a thousand, uh, that we could at least know. There were also there. There were, they were in really bad disrepair.

They were sunk, maybe up to five inches into the mud. We'd have to dig it out with the heel of our shoe. There were some as, as we got closer to the parking lot and what I imagine is the newer part of the cemetery, there were some that actually had names and dates on them. These would be people that had passed away in the late seventies.

So I think, at some point people did start to think about maybe, maybe we ought to make sure that people are named rather than just numbered.

Robbie: So you come back to our group and share that information. And I think that led to another trip. And that's what we're gonna talk about on our next podcast, and I would like to hear from Nancy and Cassandra and Nestor, all parents of people with developmental disabilities here on the call today.

When you heard Tim and Bridget's story about going to Orient, how did you feel? Nancy?

Nancy: Heartbroken is the probably most pronounced feeling and immediately following that feeling. I need personally to pay tribute to the souls of the people that were abused there, both in life and how they lived in that institution as well, and how they were disrespected as they laid in rest.

Robbie: Thank you for that. Cassandra?

Cassandra: I felt like when I heard that Tim had gone and that he was gonna go the next year, I felt like I wanted to go because I had a son with a disability. Probably could have gone to live in a place like that. And it made me sad to think that he could live his life without anybody really knowing him and paying attention to him.

So the first year I had my son and my daughter (visit the cemetery.) Troy has a disability and Sophia does not. And we went and experienced it and it really touched all of us. And then after that, we had my husband go with us. So we have been there three years to just remember how things were. And remember the individuals that are buried without anybody to remember.

Nestor: I was compelled to go because of similar reasons. Just just knowing that if these were previous times that Troy would be likely be an institution like that and was overwhelmed just by the sheer magnitude of it, you know, as, as Tim said, there were probably a thousand graves, many unmarked, unnamed.

And certainly all of them until now, forgotten. And I, it also makes me think that even today, even though that, you know, we're trying to make connections for Troy and trying to make sure that he's part of a family and part of a neighborhood and part of a community, if he doesn't have those strong connections, he may have a headstone. He may have a name on it, but how many people will really remember him and go visit?

Robbie: And that is our mission, to spark those connections, to raise awareness, and to stop the patterns. I'd like to end this call with a couple of thoughts.

Every year on March the first, the disability community comes together to remember the victims of filicide. People with disabilities killed by family members.

Vigils are held on this day of morning around the world. It's not just a term that's used with respect to death at the hands of parents, it's caregivers, and legally these cases are categorized as murder or manslaughter or simply homicide, but we have to acknowledge that it’s everyone's responsibility.

From a community perspective, it's everyone's responsibility to be aware, to seek the truth, and to do everything in our power to be as inclusive as possible. On March 1, our Starfire group will visit the cemetery of an area facility and we invite you to listen to our upcoming podcasts.

Also, the resources that Tim shared earlier, we'll post them on our website so that everyone can, can see them, and we'll make sure to, to publish that. Tim, thank you so much for sharing this story of your first visit to Orient. I'm looking forward to talking with all of you next week on our next episode.

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Please note: The following podcast transcript is machine generated and may contain spelling and grammatical errors.

Robbie:

Hello and welcome to Starfire's podcast, More. I'm Robbie Jennings Michels, and I'm talking with Carol Combs, who leads our Family Leadership Network here at Starfire. The Family Leadership Network is a family led effort that empowers families of loved ones with developmental disabilities to cast a vision for what's positive and possible for themselves and their families, and it gives families an opportunity to discover interests and identities beyond disability.

One of the best parts is that families become, as we say, named and known in their communities, named and known for something other than their disability for something they're interested in, for something they do really well. And it gives families a chance to spark some connections and nurture those into real relationships, relationships that are based on common interests. Families get three essential supports from the network, there's mentorship, which is free monthly one-on-one sessions with a dedicated Starfire family mentor.

And that's important because that family mentor has firsthand experience as a parent of someone with a disability who's launched their own family project. We also have a monthly community design session and a community story hour and a families at the center of a connected community training that's happening this month and next. So be sure and check out our website. Lastly, we pay families for their time and we give them funds to host their own community project to pay for things like refreshments or signage or supplies, whatever they need to launch a project that they design that's unique to them, and that helps them spark connections that can be nurtured into relationships.

Families in the network are asked to ascribe to four commitments, discovering their community gifts not fixing what's wrong, creating something through the family project that belongs to them in their neighborhood versus recreating old service models. And the fourth commitment is what we're here talking about today. It's joy, and the commitment is focusing on joy and not commiseration. So Carol Combs hosted a family project in her Hamilton, Ohio community. Carol, tell us about that first project, how that impacted your family and what's life been like for you since, as we say, you stepped into this space?

Carol Combs:

So I'll start by just sharing a little bit of who we are as a family and what we did. Five years ago, we started on this incredible journey of really discovering and we were discovering who we were, what was our purpose and belonging, and what gifts we had that we could contribute to our community. So with the support of a mentor through Starfire and some funds, we were able to launch a family project and we landed on doing a Sew and Play. Sew and Play is where you gather with friends and neighbors in a shared space in your community and you learn how to sew together. This was super important for our family because as we thought about what we'd like to do, we wanted to ensure that it was something that we could do well past the timeframe of the family project, and so, we landed on sewing.

Now, the funny thing here is that none of us really knew how to sew like at all. And so, one of the first things we had to do was find someone who knew how to sew. And that's part of the family project process we went through was learning how to connect with people and to invite people into a space with us. It's not about the sewing, it's about the coming together and getting to know one another. So we found our expert sewer, Ms. Sandy. And Sandy had been in our lives for some time, we just didn't know her that well. And what I learned later on is that Sandy was wanting to be a bigger part of our family, she was just waiting on that invitation.

So in 2018, we launched a Sew and Play here in the city of Hamilton. We held it at a local park that was fully accessible and allowed people just to jump in, they take a break from play and sew a button, and the end result of that is this beautiful story quilt that tells the story of our summer of connecting. Our story quilt is really cool because like in traditional quilting, it's a one person working on one panel, and this was the entire community working on one panel each week. So it was really cool. We said yes to the family project because at the time we were feeling very lost and lonely and at the mercy of the systems we were hyper-focused on the list of can'ts won'ts and nevers attached to my son's diagnosis. And we were just really stuck in a place of wanting something different and new.

Robbie:

Thank you so much for sharing that. Oh, I love that story quilt outcome. Who else helped you along the way?

Carol Combs:

Oh, man. So there's instantly a lot of names that come into play. First, I just want to say that we learned how to start connecting with people. So one support that helped us along the way was the mentorship. I was given some resources that taught me how just to talk to my neighbors because we had never been in that space before. If it didn't include services, we said no because it was just really easier that way and it felt safe for us as a family. And so, I stepped bravely into a space where there was a neighborhood meeting that someone I had met suggested to me. And little did I know that by attending that neighborhood meeting that night, that our family's network of people supporting us would grow tenfold. And so, along the way, us as a family, we've helped each other and we have also gathered these people in the community. Pastor Aaron, Kathy Frank, Brandon, Brooke, these folks and many, many more that I'm not even mentioning really helped us along the way because they were helping us find places where we could engage and get to know people.

Robbie:

One of the things, Carol, that I love most about your family project story is the impact that it had on the care of your son, Grayson. I believe he's 13 now. And you have shared that before you stepped into this space when you needed to call for EMT support for things like seizure monitoring or suction assistance, but in the past, you have felt like a burden. And after those family projects and after the Sew and Play events, the EMTs would come in and say, "Oh yeah, hey, Grayson, how's it going? We know you." I think that speaks volumes to just the mind shift that can occur when you are named and known in the community. Can you talk about some of your other takeaways from this family project journey?

Carol Combs:

Absolutely. So you named one of the biggest and I think most important pieces for me is that named and known, Grayson is my 13 year old son. He was born with a developmental disability. We were given a very long list of can'ts, won'ts and nevers, and it became like, how do you move past that? And so, that's where stepping into the space with Starfire really changed our world for the better because it allowed us to put that disability, allowed us to put that list of can'ts, won'ts and nevers on the back burner and really discover who Grayson is as a person. He's a neighbor, a friend, he absolutely loves '80s wrestling of all things, and he's a fan of his local sports team, so Cincinnati Reds and Bengals. He holds the gift of being a community connector. So for Grayson to be named and known for his gifts and what he brings to this world was such a breath of fresh air for me.

When we started as the Combs family activating spaces, people got to know Grayson in that process. So Grayson being named and known, let him be Grayson Combs, part of the family doing cool things. We found our place of belonging, we discovered purpose, and those connections that we talk about grew into relationships. I don't have to ask for special accommodations for Grayson to show up in the community anymore. Do you know why? Because they know him, it's no longer an ask. It's a, "Oh, Grayson is coming? Great. We're all set up for him anyway." Every connection is an opportunity for a new relationship to form. And my hope is that every year for the rest of my life, I add one new relationship to our family.

Robbie:

And that feeling like you belong and that feeling of individuals being in your life who want to be there, who have two-way conversations with you that don't surround or involve disability, that provides a wonderful equilibrium. And interestingly enough, finding joy is the fourth commitment of the Starfire Family Leadership Network. We know that joy is powerful and sadly, sometimes joy is elusive. How were you able to unlock it?

Carol Combs:

I'm just going to be honest and say it was the hardest commitment for me to really lean into. That may sound surprising for some folks listening who know me because joy is at the heart of who I am. But at the time we were like sadness and this commiseration was taking center stage in our family and we had to find a way to break through that. And that's why this commitment for me was the most important because it was the one that required me to be the most mindful around. I really had to wake up every day and say, "I'm making a commitment to joy."

Now, what I've come to understand about joy, at least for me, because that joy is always there and it's waiting to be activated or unlocked. So we have this feeling of joy sitting within us, but sometimes we have to have those activators of it. For me, what I found is that unlocking those joy keys, if you will, within our community and they're kind of floating around all the time and they come in the form of memories, but they also come in the form of people. People in our community are our joy keys that unlock that feeling that lives within all of us. And what I've learned is that even in the hardest of human conditions, joy is present.

Robbie:

Carol, tell me more about the human conditions.

Carol Combs:

So human conditions are just markers and time. They can be celebrations, they can be the birth of a child, they can be the death of a loved one or a person within the community. Human conditions are illnesses and the feeling of sorrow. Human conditions are also in a place of happiness.

Robbie:

Well, I think it's fair to say that you and your family have had a year chock-full of human conditions. I know that it's been very intense and you and your family have experienced all of these human conditions in the last 12 months. Would you agree?

Carol Combs:

Absolutely. I would agree.

Robbie:

And maybe intense would be an understatement, but gladly, you're here in joy. Tell us about your year.

Carol Combs:

I am here in joy today and it's great to be here in the space of joy, but our year has been intense, to say the least. Over the last year, our family experienced my own diagnosis with breast cancer, which wrapped our world in a pretty big way. There were a lot of unknowns, a lot of uncertainty, and goodness, what happens when mom who leads the ship and navigates the waters for everyone isn't at her best. And there were days when it was really, really hard when I opened my eyes and my body hurt head to toe from treatment and I didn't know how I was going to get through the day right to function, I would lay in bed and I would think about joy. Who are those people? What are those things that are going to help me unlock joy today. I'm happy to report that I'm a cancer survivor, but it took a lot out of us in the last year.

During that same time, my mom, who was instrumental in our efforts to find purpose and belonging within the city of Hamilton became ill. She too was diagnosed with cancer and she passed away at the beginning of September. These two things combined really challenged us as a family and lots of different ways. One of the biggest challenges was, how in these moments of human condition is joy even possible? And I'm here to share that joy is possible during these times. We have those joy keys floating around and they come in the most unexpected ways. For me, when I think back over the last year, I can say that had it not been the work that we did as a family to grow connections and to build these relationships, we would not have come out on the other side of these things with joy still coming from our hearts and coming from within us.

It was our community and it was our connections that really supported us, not just through my journey with cancer. It was the community that supported me and our family when we lost mom. Mom was instrumental in the community. And I thought back to that story that John shared about the bereavement counselor and how care can't be produced by a system because what care is is a manifestation of community members with the capacity to care for one another. And as a family, we got to experience that.

Robbie:

And the capacity building that the Combs family did helped unlock that community and that joy that would have otherwise not been there. I can't thank you enough for sharing your story. I am thrilled to hear that you are cancer free. And I'd also like you to tell us a little bit more about the legacy that your mom left in the Hamilton community.

Carol Combs:

Mom, through our family's efforts became named and known in our community. It was something she hadn't experienced in her 60 plus years of living here because she hadn't really thought about the importance of community until, as a family, we started thinking about it. So when mom passed away, our community surrounded us and they helped carry the weight of the grief and they mourned with us. And from that, we were able to draw strengths and find joy. And so, the legacy that mom has left behind is that legacy of connection. The work that she and I did and the Jefferson neighborhood to ensure that all the residents there knew that they were welcome, that they had a place in the community to safely gather at Jefferson Park. That was her legacy.

And so, this past month, at the end of October, we were able to honor mom, and it wasn't of my suggestion, but members of our community came to me and said, "We'd like to honor Billy. She was an important part of our community and she is deeply missed. We know that she loved the park." The park was mom's favorite space, and she took it upon herself to care for this park. Walking it every day to make sure it was safe for the day's flow of kids and she spent a lot of time just sitting on that bench reflecting.

And so a few years ago, we had the random opportunity, somebody called us up and was like, "Hey, we have all these extra pumpkins. Could you all do something with it?" Me and mom looked at each other and we were like, "Yeah, we can do something with these hundred pumpkins." And within a two week period, she and I, with the help of some of the Jefferson Alliance folks, did a pop-up pumpkin patch at Jefferson Park. We did it on like $50 enough to buy drinks, popcorn and some paint. We set up tables and a popcorn machine. And for three hours that day, we greeted neighbors, gave them a pumpkin, and we painted alongside them.

And so, at the end of October, we honored mom by doing a pop-up pumpkin patch that was suggested by folks in our community that knew her and knew her love just for the park and bringing people together. And it was really beautiful. And it was a reminder of like, wow, mom made an impact that we didn't even recognize that, I mean, people who didn't know mom knew her because they were using that park and they had seen her. And so, to be able to come together with community and celebrate joyfully this legacy of Billy Varon, that the person who took charge of the park and made it her own and worked to connect people in the community, it was just really beautiful in the state of the city. There was an acknowledgement to her work and our work together as a family to build a more connected Hamilton.

Robbie:

Oh, thank you so much for sharing that and for reminding us that without sorrow, there is no joy. And thank you for helping your Hamilton, Ohio community heal and build connections and be brave by stepping into this space. Families, if you are interested in learning more about the Starfire Family Network, we invite you to go to starfirecincy.org/families or reach out to Carol directly at carol@starfirecouncil.org. Again, Carol, thank you so much for your time today.

Carol Combs:

Thanks for letting me share.

By Carol Combs, Starfire Family Leadership Network Coordinator

About 12 years ago when my oldest was knee high to a grasshopper, we would walk out our front door and she would look across the street at the remnants of what used to be a bustling parking lot for the Hamilton Die-Cast Company. She would proudly say “look it’s Hamilton’s Rocky Top Mountain Park”. To her young eyes she seen the potential in what it could be, while us adults just seen it as a weedy overgrown dumping ground and a place where nothing good happened. During that time, the neighborhood we lived in was not known for anything good, it was the place you were told not to go after dark and you always locked your doors before turning onto East Ave, the main artery of the neighborhood. If you spoke to the residences of the neighborhood, they would tell you that “the city forgot about us here in this part of town,” and signs of that to be true showed in the road conditions, the abandoned spaces, and the constant flow of “bad” stories that came from the neighborhood. Little did I know that in the years to come, our family would help bring that space to life and begin shedding light on the gifts and goodness that lived within the neighborhood.

Fast forward to 2017, the neighborhood is still home to our family and we had grown by one; there is another knee-high to a grasshopper seeing the potential of that barren and abandoned space once known to her sister as “Hamilton’s Rocky Top Mountain Park”. My mentor once shared this story from “Walk Out, Walk On” (https://walkoutwalkon.net) about a small group of citizens who gathered in a space that was very much like the space we seen when we walked out our front door, a weedy overgrown dumping ground and a place where nothing good happened. In the story, each week a small group of citizens would gather, hold hands and commit to cleaning up “just the space where their hands made a circle”, as weeks went on more citizens joined and in the end the space was transformed into a beautiful, shared space where the community could come together, celebrate, and get to know one another. Having stepped into a new space where we as a family were beginning to look at life a little differently, explore our community, and discover our place of belonging, I too began to see that old parking lot through the eyes of my children and seeking out who might join US in transforming the space.

My family and I have been on an incredible journey the last 5 years, we have learned a lot about ourselves, we have all built valued roles in our community- each of us Carol, Briella, Grayson, and Charlie- have become named and known in Hamilton for the gifts we shared to bring what felt impossible to life in our neighborhood.  Over the course of 2 years, we activated our own social network and brought to life a space where people in a “forgotten neighborhood” could come together to celebrate and get to know one another. What once was a place where nothing good happened is now a place that is a source of good.  The space is ALIVE! One of my favorite things to do during that time was to go outside on the porch and listen to the kids playing and the adults enjoying each other’s company; the sounds of little legs sliding down the plastic slide, the sound of the kick against a soccer ball and the comradery that comes with the game, the squeak of the swings, swinging in unison, and I wouldn’t be doing the moments like this justice if I did not include the smell of the neighbors cooking tamales outside-this was community…our community. 

By me and the kids working alongside my mom and other members of our community, we had accomplished so much in a short amount of time.  Joining The Jefferson Alliance brought new energy not just to the neighborhood but to all of us and in the process, we gained some amazing people in our life; Pastor Aaron, Kathy, Woody, Linda, Frank, Brandon, Brooke, Peggy, our 17Strong family (and that is just naming a few). As a family, we tasked ourselves with the responsibility of caring for the park. Each morning mom would get up and walk the park, picking up trash and making sure it was safe for the day’s flow of neighborhood kids (including my three). At least once a month-sometimes more- the kids and I along with mom and our Jefferson Alliance/17Strong family, would hold an event. We joined forces and got involved in the Art in the Park movement in our city, hosting a Saturday morning craft once a month, we held a movie night, organized a Día de Los Muertos celebration with our neighbors, we would play ball with the kids, and supported those who wanted to use the space for events however we could. It was great to see Pastor Aaron and his parishioners activating the space too. What once was a barren dumping ground was alive with grass, trees, accessible playground equipment, a mural, and people from the community.

I had decided some time ago that Hamilton would always be home and I imagined that it would also always be in the Jefferson Neighborhood but just as the seasons of nature change, so does life. Two years ago I made the decision to move, we needed more space and the time was right. I had my eyes set on this house across from the park but the timing and the work needed was not in the stars and we landed in a brand-new neighborhood. Moving from the Jefferson neighborhood was a hard, I felt like I owed it to the people there to stay, I felt like if we left things would go back to what they use to be, I felt like those we had come to know and love in that neighborhood would feel like we betrayed our commitment to them and our community.  I know now that is not the case, I still know and love the people we met. In our absence, the activation of the park continued. Pastor Aaron and his group show up and care for the park and the people of the neighborhood. New neighbors stepped up to keep it clean when mom could not and each time, I go to visit, the park looks even more alive than my visit before. The work we did as a family brought to life so much for us and our neighborhood.  Our roots are deep here in Hamilton, our relationships within the community are even deeper, and new life grew because of our family’s discovery of the power of community, connection, and contribution.

Learn more about the Jefferson Neighborhood here: https://www.justhamilton.com/a-shared-passion/

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Please note: The following podcast transcript is machine generated and may contain spelling and grammatical errors.

Robbie:

Hello and welcome to Starfire's podcast More. I'm Robbie and we're talking about the Starfire Family Leadership Network with Melanie and Steve of the Tyner-Wilson family. Melanie and Steve joined our family-led network this summer. And if you're not familiar, the Network helps families of loved ones with developmental disabilities to cast a vision for what's positive and possible for themselves and their families. It gives families an opportunity to discover interests and identities beyond disability, discover their gifts, and then share those gifts with their community. Families in the network get 1:1 support, mentorship, training resources, and funding. We pay families for their time and to buy supplies or refreshments or signage for their community project so they can meet others, spark connections, and nurture relationships. So if you'd like your family to be part of the community and you're not sure where to start, check out starfirecincy.org/families.

Melanie and Steve, thank you so much for spending some time with us today to share your story, to help others learn more about Starfire. I want to hear about your project, but tell us a little bit about your family first.

Melanie:

Well, Steve and I have been together for a million years. We've been together, gosh, about 46 years. We live in Lexington, Kentucky and we have an amazing son, Jay, and he's our biological child who just happens to have autism. He's 29. He has an intellectual disability, but he's just the neatest, neatest person. But we had him very late, but we felt very honored to be able to have him as our son.

We wanted to have another child and we tried and tried and tried and were never able to get pregnant. We then got interested in adopting through our foster care system and we have this amazing son, Jesse, who is 22 and we got him when he was just three days old. We also have custody of one of his children, Braydon, who is now four and has a lot of energy. He's never not moving. He's just ‘go, go, go, go.’

Steve:

One of the neatest things about this whole situation is that we're getting to see all the joy and spontaneity and love that a little guy can bring to a family just by being himself and being interactive with us to the 10th degree, maybe 11th degree. He's interactive. So it's really quite a wonderful experience.

Melanie:

I started on my journey as an advocate for Jay 27 years ago. I was not very graceful. Basically, I'd never been in my lily white, middle class life, I'd never been discriminated against, and the first time it happened was a result of him [Melanie & Steve’s son, Jay.]. People didn't want him in their preschool program or their childcare program or they didn't want him to come to their child's birthday party, and so that kind of set the tone for a lot of my advocacy.

And so there were many years that I was very angry and very frustrated and I realize that that doesn't work. I mean, you can be mad and you can be angry, but what really seems to work is having him be his best self because he is this neat person. And as people get to know him, individuals have been really impressed with him as a unique individual. Now it's more about how can I make him feel like a part of the bigger community?

Robbie:

Talk with us about some of the individuals that you know and how you got plugged in.

Melanie:

I had always been, I guess, connected with Starfire. I got on your list serve and got different notifications in the past. There was a program, a meeting, where they talked a little bit more about the specifics of Starfire and I got a chance to listen more intently to what the whole premise, belief system was behind Starfire. I loved it because it talked about how historically you had been more of a day program and then you felt that you wanted to switch and be more inclusive.

Then the Starfire Family Grants came together and you were doing more of these kind of activities. And so the longer that I listened to the information and got to know what you all were all about and the beautiful thing is that you provide funding for the different projects. I just thought that was phenomenal.

Robbie:

Thank you for sharing that. And even as busy as you are, you felt that joining this Starfire network was worth it. And that says a lot about our program. I understand that you did two projects.

Melanie:

I know it's crazy.

Robbie:

That's awesome. Tell us about your projects.

Melanie:

We wanted to do a pumpkin decorating event. We reached out to our Neighborhood Association and they thought that was a great idea. They helped us advertise it. Because we had the funding from Starfire, we were able to purchase close to a hundred pumpkins for the two different events and lots of paint and lots of carving tools and set up of an event, if you will, where kids and their parents and adults and grandparents could come and decorate a pumpkin in any way that they wanted to. And so some people decided they wanted to carve their pumpkins. Some decided they wanted to paint their pumpkin.

Jay was there with one of his helpers and he decorated a pumpkin and had a really great time. And of course our grandson, Braydon, he just got way into it and was running around and there were tons and tons of little kids there. At the first event, I think we had maybe 30 families and children show up for the event. And we had neighbors that had never really talked to each other… connect. And I love that. I think that's kind of what neighborhoods are all about. 

We had a second event that the Neighborhood Association asked us to do it a second time because the attendance was so great, and so they used it as kind of a strategy tool to get people to come to a Neighborhood Association event. And at that meeting we had over 50 people there.

Steve:

Actually 50 kids and 75 adults.

Melanie:

Oh gosh.

Steve:

So it was a record setting event. They never had such high attendance before.

Melanie:

Yeah. So it was wonderful. That night we had to go and buy more pumpkins. We drove to a pumpkin patch that was about 25 miles outside of Lexington. We loaded up our minivan with 50 pumpkins and bought paint. And right when we got back into Lexington, our engine started smoking. So we had several of the neighbors that pitched in and helped us finish getting set up. But it was so sweet how people were so willing to offer their support. I don't know. I was very touched by that.

Steve:

Yeah, it just makes a domino effect in your neighborhood of people helping each other and being more friendly as Melanie said, being more interested in who you are and what you're up to.

Melanie:

Yeah. Steve borrowed tables from his office and we bought a pop-up tent kind of thing and we set literally everything in the front yard. He brought hay bales so that the little kids could stand on the hay bales to be able to reach and paint the pumpkins and/or carve and caregivers could stand beside the child and help them with the activity. So it was a really fun... And it was only for two hours. That was nice because it was kind of in and out. The activity had a beginning, middle, and an end to it. And I think people came...

Steve:

There were kids running!  Right? It started a 11:00 and like 11:01 there were kids all in the streets running to our house which was pretty cool. And parents trying to catch them.

Melanie:

Yeah.

Robbie:

Love it!

Melanie:

And we met a lot of families that had kids with special needs that we had no idea. And so that event gave them comfort to be able to talk with us a little bit about their life with their loved one. And so we were like, ‘You should do this event kind of thing.’

And it's so beautiful. He's another person that's in this community that is living life. He has all these neat things about him, but they're not negative things. He's a part of the community. That just gives me great hope for the future. What's really important to me as a parent is to have a society, a culture in our community, that is welcoming to him. That's kind of my passion I guess right now, is to make sure we can do that.

Robbie:

I do think that people appreciate the opportunity to be with others, especially post pandemic, but sometimes you have to take that first step of setting up an event or talking about what can we do. And then there's inviting people. How did you get people to come?

Melanie:

Steve drew this amazing flyer. My husband is an amazing architect and has a really great sense of humor. So he drew this flyer that was humorous and funny and he took it around the neighborhood and we posted it on the Facebook page. But then he decided he wanted to have a much more direct, so they put it in mailboxes or taped it to doors so everybody knew about it. And that was really cool.

Steve:

I had Braydon help me because he knew some of his friends would be coming from school. So we let the school know too, so his classmates could come if they wanted to. And sure enough, three or four of them did come. So he was in four-year-old heaven.

Melanie:

I mean, what's really beautiful is our neighborhood age wise, it's very diverse, but what was nice is that they got a chance to connect with each other. Now maybe somebody will say, "Hi Jay, how are you? Good to see you."

And I just love that. And there was a couple of our elderly neighbors that weren't able to leave their houses and come over. So we ended up taking pumpkins to them. We made an attempt to make sure people were included in any way, shape, or form.

Robbie:

You had mentioned something about some of the folks in your autism group, and I really liked what you said. You had talked about how there are some people in your group who would really want to know more about this work because they really want their loved one to be a part of the community.

Melanie:

Autism is such an  interesting developmental disability, and so what ends up happening is families become very guarded and protective. And I think an event like this would give a way for the individual to be exposed to the neighborhood and have a positive experience and have fun. And also for people to see that individual living their best life as opposed to just seeing them when they leave the house and come back home because they're a part of the neighborhood too. You just want them to feel like they're a part.

Robbie:

Before we wrap up, I want to ask you if you have any additional thoughts about how Starfire has helped you or what Starfire has meant to your family.

Steve:

I think it gave us an opportunity we didn't think was possible. That's really probably the bottom line is just the whole idea that we would even do something like this was just not in our realm of possibility, but once we realized we could get the funding to do what we had to do, it's just a matter of gathering the troops and getting ready and it resulted in a fantastic memorial event for a lot of kids and a lot of adults too.

Melanie:

Yeah. If you're living life and trying to pay the bills and therapy and paying caregivers and all the different things that go along with it, the fact that you all provide the funding for events like this is just, I think is amazing. You made a lot more things possible than I think that maybe would've been in the past. It can be kind of daunting when you think about doing something like this and you think you're going to have to do it all by yourself.

And it was just so sweet to have the Neighborhood Association and different people be willing to assist. We very much have tried very hard in our life with him to make him a part of the community and we had always been comfortable with introducing him to members of our neighborhood. And it was just really the whole concept of your family project just fit so nicely into our philosophical belief system about the value of Jay and his existence in how we could make him become more a part of the community that is our neighborhood.

Steve:

I think it's one thing to wave across the street at our son Jay when he is walking by, but it's another thing to have an event like what you sponsored right in our own yard. Get some recognition of what he looks like and how he acts and what he thinks, and just try to get a little bit of interaction going with him because he's going to be in this house probably the rest of his life. We have many neighbors who have been around for 20, 30, 40 years and they need to know him as one of the up and coming citizens in our neighborhoods by having events like what you sponsor.

Melanie:

What's so wonderful about Starfire is that it's not about Jay or Jesse having a disability. The idea is that you provide opportunities that will get people interested in coming and attending some kind of event, activity that the individual just happens to be present and that they are there and they're a part of it and they are having a good time. It was just, I love the concept of it because it's such a humble kind of approach to encouraging inclusion in a very straightforward but subtle kind of way. And there's a real beauty in that and the simplicity of that. It was just a really lovely way to welcome and encourage the neighborhood to come and get to know our family.

Steve:

Yeah, I wouldn't be one bit surprised if everybody asked for a repeat next Halloween and did the same thing.

Melanie:

Yeah.

Steve:

I mean, that's how good memories are made if you're a kid or a family.

Melanie:

Yeah.

Steve:

That's what you remember about a neighborhood.

Robbie:

Melanie, Steve, I can't thank you enough.

“I’m not opposed to metrics. I just prefer the ones that reinforce my worldview.”
–Tim Vogt

There’s a term in the medical profession:  iatrogenic disease.

It’s the kind of malady that comes from an interaction with the medical system. Think of staph infections, bedsores, medication mix-ups or an unanticipated side effect of a procedure. 

Doctors, of course, take the “Hippocratic Oath,” swearing to “do no harm or injustice” to their patients.  Nurses make a similar commitment through “The Nightingale Pledge.”

But medicine and science is always evolving, so this vow is difficult to live up to without a crystal ball. 

For example, before human beings discovered germs, a common cause of death was from infections from the unwashed hands of physicians.  People believed that if the doctor was “a Gentleman,” there was no need to clean his hands before attending to a patient!

That belief had tragic consequences for many people. 

In our day program at Starfire, we had to track “Unusual Incidents” and send them to the local government every quarter.  This was a way of insuring we were reporting and addressing any trouble people with disabilities experienced in our programs. 

These “Unusual Incidents” could range from simple things – burns from handling a hot pan in a cooking class, tripping over a curb and scraping a knee – to more serious things like getting lost in a downtown crowd or reporting that two people with a disability had touched each other sexually and we couldn’t discern if consent was present. 

Sometimes, “Unusual Incidents” rose to the level of “Major Unusual Incidents,” such as serious reports of abuse, someone needing an ambulance after having a grand mal seizure, or in one case, a staff who neglected to do the Heimlich maneuver as someone in their care choked on a bit of their lunch, even though they’d been thoroughly trained on it.

We took these reports seriously and wrote up plans of correction. We talked with families and caregivers to fill them in on what happened. We revised policies to prevent any future repeats and disciplined staff under who’s watch it had occurred.

At the high point of our group-based programs, I calculated that we had one “Unusual Incident” for every 648 hours of service we provided over a three-year period.

Once we desegregated our programs and completely individualized our service, I tracked those numbers over another three years to see if there was a difference.

I found that number had dropped to one “Unusual Incident” every 2,764 service hours. 

That means that people with disabilities in our group-based settings were 400% more likely to experience trouble as a result of being in our group-based programs than they were when we supported them uniquely and individually.

It was easy to understand why.  Staff were managing groups of three to ten people with disabilities at a time in our groups.  They were distracted and lost count, or helping someone else while another person had trouble.

That’s an “iatrogenic” trouble.  It’s trouble that’s caused by their involvement in our care systems.

When I share that data with other people, their eyes get wide and they seem to grasp the reality of the problems that face people with disabilities when they spend their days in groups together.

But this data doesn’t even scratch the surface of the danger our care systems inflict on people with disabilities.  The more we studied grouping effects of our system on people with disabilities, the more we came to understand the social violence our groups create for them.  They become segregated and isolated, and eventually lonely to the point of being nearly anonymous to anyone outside of the rotating care providers we hire and the other people with disabilities trapped in our care.

And that, of course, begets an entirely deeper danger:  No one is there to notice if someone is choking.  No one is there to check in on a person’s well-being in the service system, to look for abuse or neglect. 

And what about the psychological violence of never being known?

In short, this loneliness, in my experience, is the most worrisome iatrogenic disease people with disabilities contract from interacting with our system of care.

Every service our system offers purports to emanate from some good intention.  But more often than not, the help we offer starts in the wrong place, assuming that all people with disabilities are alike, and that the economic efficiency of grouping people with disabilities is a good thing to achieve. 

These institutional assumptions come from cultural assumptions and reinforce them, giving them validity and energy.  In turn, the cultural assumptions give validity and energy to our institutional assumptions. 

It’s a vicious cycle that no one seems able to interrupt at the scale of the problem.

Over my career, which has coincided with the emergence of “big data,” people have asked me for metrics, both as a way of holding Starfire accountable to the public and charitable funds it received, as well as a means of determining if the work we do is even effective. 

This hope for proof became especially critical as we started to understand a new way was necessary.  “How do you know it will work?” and “Why not do both?” were questions I felt pressure to answer in order to convince people that we were on the right path.  Never mind that they rarely held group-based models to as high a standard as they did us.

I do believe data points and metrics are important, but in reality, most proof points are too far downstream.

We have to start in a similar place to doctors in the 1800’s as they started to confront the reality of iatorogenic disease.  They had to look for a cause of trouble and found they were the culprit.  They had to start washing their hands.

We need to take a similar journey of accountability and introspection in our own system of non-profits and helping organizations. 

Instead of starting with data that proves what helps, maybe we should take a step back and start with eliminating what hurts. 

The first metric for our system to take stock of itself is best counted with a simple question:  Does my program ask people with disabilities to compromise their unique identities, personal purpose and sacred individuality as a condition of receiving the help I offer? 

If so, my program is part of a lifelong pattern that leads to terrible outcomes, and many violences, for the people I claim to care for. That’s an iatrogenic problem. 

If we don’t remove the harm that is baked into our service models and social assumptions, we will never be able to overcome that and get to a place of support and inclusion.

We must wash our hands, so to speak, of the segregation and group-based services we’ve been forcing upon people with disabilities.  If not, everything we try will fall short of what we hope. 

From there, we can start to take action.  If the good and important supports we offer – learning, building out personally meaningful days, getting a break from our families, engaging in important therapies, finding jobs or good places to live – originate in a group-based structure, we must take steps, either small or large, but absolutely forward, into more personalized iterations if we are to truly win a more inclusive future.

It won’t be easy, as “groups” are an entrenched social and organizational structure around disability.

But organizations are exploring new models.  Even State and Federal entities are encouraging this evolution in our field. 

It’s beautiful. 

And it’s slow work. 

Part of that slowness is because it is also difficult work.  We have to confront our own egos.  We have to find new ways of financially sustaining our organizations that don’t depend on segregated billing schemes.  We have to assume that each person with a disability fully belongs to their community, family and selves, rather than assuming we are the end point of care for them.  That hurts to consider, but it’s worth it.

It’s hard to let go of things we are comfortable with.  But what we have isn’t worth keeping, if we really take stock in how it is affecting the people it’s supposed to help.

Where we start from matters, and our social mindset around disability is in desperate need of a better starting point, one that will be a guiding light to our culture and enhance the belonging of all human beings, including people with disabilities.

Let’s start with the first metric, and see where we might get to from there.

This the final of a six-part series.  Link to Part 1, Part 2 , Part 3, Part 4, and Part 5.

Andrew Solomon, in searching for meaning in his own story, wrote a heck of a book, “Far From the Tree.”  In it, he studied various ways that children differed significantly from their parents.  His title cleverly plays on the old adage, “The apple doesn’t fall from the tree,” and Solomon’s work looks at what happens when it does. 

He studied lots of examples, including ones related to disability.  There are more than a few good insights, and a few passages I would take issue with, but by and large, he offers that people had good lives if their parents found meaning in their child’s story. 

Parents who learned to integrate the difference of their child’s life from their own not only found ways to help their children live good lives, but also lived good lives themselves. 

Parents who resented the way their children showed up in the world experienced a lot of trouble, both for their children and for themselves. 

This is broad-brushing the book, of course, but it was one of the author’s primary insights after years of intense listening to the stories of countless people with disabilities and their families.

And it rhymes with what we’ve learned at Starfire, which, in essence, comes down to people finding common cause with each other. 

When we started playing around with our new ideas, what emerged were these really cool community projects.  They invited people into crossing over the barriers of their difference and working together to bring some new life to the world.

They were making meaning together, despite, and oftentimes, because of, their differences.  This had a bonding effect.  They saw each other as more alike, beyond the superficialities of demographics.  They were alike as human beings, sharing the spirit of creating a better world.

That’s what we invited families into and wondered if they might learn a similar lesson:  That their children are simply co-humans who they happen to be related to.  And what can co-humans do together?  Almost anything they imagine.

We’ve had a front row seat for how people have answered that question in beautiful ways for over a decade.  But it still feels countercultural, so it still needs serious intention and commitment if we’re going to get there.

Making these commitments asked families to give up a lot.  They had to think and act and relate in new ways. 

Asking them to give up the certainty of what the world told them about “disability” wasn’t easy, but when they did it, they found so many good surprises. 

Carol shared that “we are no longer ‘the family with a kid with a disability.’  We are ‘the family that does cool stuff.”  And that new identity included her son in it.  What a powerful shift for them all.

One mother discovered a neighborhood book club that she’d never known about.  Whether she was intentionally left out, or just so isolated, doing her project helped her grow her connections, and she ended up with a new set of connections with her neighbors.

Another family found that their project inspired their neighbors to reciprocate, and their social calendar started to fill up with parties and invitations….even during the pandemic! 

All of this goodness, and so much more, came as a result of the families who committed to trying another way.  That’s the power of intentional commitments.

But it’s tricky making a commitment.  It feels high stakes. 

One way we learned to lower the risk was to make the commitments small and temporary. 

The truth of the matter is that our commitments often are in conflict with each other. 

Each of us wants safety and security and stability in our life.  Each of us also want growth, new experiences and some level of adventure.  We call these “competing commitments,” and there is a power in naming them that way.  We can hold them both together.  We don’t have to relinquish one for another forever.

We can decide to go for safety one day, and take a risk the next.  Or we can lean toward stability in one aspect of our life, but take some risks in another.

Our “Four Commitments” compete with legitimate and important other commitments, which is why we limited how we apply them.  We only asked them to do it for this short time and only for the project they were working on.

The reality is that families do need services.  But services don’t bring community.

And families can garner some support from disability-centered programming.  But we know their child has many other aspects of their identity and giftedness to offer the world.

The Four Commitments helped families focus on new social connections and new stories, while they still maintained the supports of more traditional services.  They could step into new mindsets about their children, themselves and their neighbors while still navigating the culture around them that isn’t quite where we need it to be yet. 

Families had some space to explore something new by committing to it for a short time, in a limited fashion.

That gave them creative freedom to design their own unique project, including their own unique network of people, discovering their own meaning in their own story in their own way.

Starfire staff had been launching creative community projects for five years before we invited families to lead their own project.  When our staff did it, we could meet on a regular basis and tell them how to do the work.  They were employees, after all.  That’s one form of power.

But we didn’t have that kind of control over families, nor did we want it.  So we developed the Four Commitments as a way to give the families some guardrails for their efforts, should they choose to adopt them.  For every family that said “yes” to committing to a project, there were at least as many that said “no,” which was fine.  Commitments are chosen, after all.

In looking back, though, we came to see that the Four Commitments weren’t just for families.  They had emerged through our staff’s early efforts and grew into our organizational culture.  We had just never named them!

We’ve since found them to be helpful in all our efforts to innovate around inclusion, carving out a space for new kinds of action and energy.  Once that space is clear, it can be filled with the goodness of a family and community.

Focus on gifts.

Build something that is uniquely yours.

Find the free connections that community offers.

Look for joy.

See where it goes.

Photo by Priscilla Gyamfi on Unsplash

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Robbie
Hello and welcome to Starfire's podcast, More. We're talking today with Achsah Fitzhugh, Nithya Narayan, and Tammi Stauber, three of Starfire's family mentors. As family mentors, they guide families of loved ones with intellectual and developmental disabilities to nurture relationships beyond common interests versus disabilities and beyond paid staff. As parents of loved ones with disabilities, Starfire family mentors have firsthand experience breaking the cycle of social isolation, creating sustainable community supports and developing better stories for themselves and their loved ones by creating and launching inclusive community projects.

This is the third episode on our Family Leadership Network. We've covered the who and the why, and you can find those on our website; and today we'll tackle the what.

Let's take a second to share some information about our program. The Family Leadership Network is a family-led effort that empowers families of loved ones with developmental disabilities to cast a vision for what's positive and possible for themselves and their families. It gives families an opportunity to discover interests and identities beyond disability. And one of the best parts is that families become, as we say, named and known in their communities and for something other than their disability, for something that they're interested in, for something that they do really well. And it gives families a chance to spark some connections and nurture those into real relationships, relationships that are based on common interests.

Families in the Family Leadership Network get three essential supports from Starfire. The biggest one is mentorship. So it's a free monthly one-on-one session with a dedicated Starfire family mentor, three of whom you'll meet today. And these mentors again, have firsthand experience as parents of someone with a developmental or intellectual disability, and they've launched their own family project. And they're going to share those stories today. More free resources that include a monthly community design session and a community story hour and a quarterly Families at the Center of a Connected Community training that offers a bit more in depth resources. And information about these can be found at starfirecincy.org.

Last but not least, families get a project stipend. We pay families to participate in this program with us for a couple of reasons. One, we really value their time and their dignity. And secondly, their investment of time is helping Starfire realize its mission, which is to build a more inclusive world alongside individuals with developmental and intellectual disabilities. So each family gets a budget. They work with a mentor to figure out what their program or project could be. They get money for that project, be it refreshments or signage or chairs or you name it. And then they launch the project and they get some pretty good results from a connection and from a relationship perspective. And we'll learn more about that in just a second.

Each family is asked to ascribe to for commitments and that's discovering their community gifts, not fixing what's wrong, creating something through that family project that belongs to them and their neighborhood and not anyone else, growing connections in their community and not recreating old service models. And the fourth commitment is focusing on joy and not commiseration.

The gentleman who leads our Starfire learning network is Tim Vogt and he just published a blog series on the four commitments. And that can also be found at starfirecincy.org and I invite you to take a read.

The family projects can be anything. They can really run the gamut from backyard barbecue to a sew and play in the park to chalk in the driveway to porch concerts, art days. And they're designed to share a family's gifts and the possibilities are endless, just as endless as the benefits of becoming named and known in their community.

If you want to learn more about this program after the podcast, I invite you to reach out to Carol Combs. Carol is the leader of the Family Leadership Network and her information is here. It's carol@starfirecouncil.org. and you can learn more about the program as well at starfirecincy.org/families.

So let's do some introductions. Achsah, Nithya, and Tammi are three of our nine, or 10 now, Family Mentors. And I want to thank the three of you for coming together today to share your what of participating in the Starfire family leadership network. Let's start with some introductions. Achsah?

Achsah Fitzhugh, Starfire Family Mentor
Yes. Thank you so much. My name is Achsah Fitzhugh. I live in Middletown, Ohio. I'm a mother of three children. My youngest son, Ahustin, was blessed with the disability of autism, and we are here just enjoying every piece of Starfire because it gives us the gifts we didn't know we had.

Robbie
That's awesome. Nithya?

Nithya Narayan, Starfire Family Mentor
Thank you for having me. My name is Nithya Narayan and I live in West Chester, Pennsylvania. I have two sons, 26 and 22 year old. My younger son, 22 year old, is Vineet and he has Down syndrome. We love hiking, cooking and foreign traveling. And we joined the Family Leadership Network to share our gifts with others and bring more people into our lives.

Robbie
Thank you. Tammi?

Tammi Stauber, Starfire Family Mentor
Hi, thanks Robbie. My husband Scott and I and our 23-year-old son, Kyle, live in West Chester, Ohio. So we laugh with Nithya. She's the Pennsylvania West Chester. We're the Ohio West Chester. Kyle is an awesome young man. He's an artist, he's a musician, but he also has the diagnosis of autism and has very limited speech. Our family is known for being the bird family. Kyle has memorized over 400 to 500 bird calls, and so we are the birders.

Robbie
Very good. I know that the three of you took some brave steps to participate in the Starfire Family Leadership Network and to launch a project. And I'm sure you had some concerns, whether they were, "Hey, do I really want to invite others into my family? I think we're doing okay." Or the concern may have been, "Hey, what if we do this thing and nobody shows up?"

Can you talk to us a little bit about how you pivoted away from those feelings or maybe share some other feelings that you had and how you kind of worked past or worked through those? Achsah?

Achsah Fitzhugh
Absolutely. Well, I had to find a way to trust my community. I had to make my community a safe place because I didn't want to enter judgment or put Ahustin or my family in a predicament that wouldn't be positive for our family. And I didn't want him to have judgment connected to his diagnosis or given a negative span because of a diagnosis. So I definitely had to find a way to find trust in my community and allow them to be everything that I wished and wanted them to be. And this was given to me as an opportunity to create that opportunity.

Robbie
So hosting the event, and I know you've had a couple of events, but hosting those first few, that helped you find the trust, that helped you build the trust?

Achsah Fitzhugh
Absolutely. It actually created the conversation. The trust was there, but the conversation grew from that. So now the conversation is not about a disability or a diagnosis. It's about the excitement that we bring to our community.

Robbie:
I get that. I hear that. Nithya, what was your experience?

Nithya Narayan
The biggest benefit in doing a project were we had mentors to go back to, to talk to. Our mentors really helped us through these feelings by sharing their experiences and wisdom. And that was very, very helpful support. And also, I think since I am in Pennsylvania, I was able to listen to those story hours every month, and it was so relatable. Every families who did a project did share that their fears, that what if people don't show up. So it was very relatable. It was helpful to be on those story hours and to have those monthly talk with our mentors, to understand that these are common experiences. That helped me to acknowledge these feelings, to accept these feelings, and focus on how we can bring people together on the project.

Robbie
Yeah. That's half the battle, isn't it? Just acknowledging that there's a concern rather than blowing by it, rather than working around it, rather than not addressing it and then having it come up later when you might not be in the right space to tackle it. And maybe frankly, that's what keeps some folks distant. I'm really glad you mentioned the story hours. That's something that Carol hosts every month on Zoom and those offer some great ideas about the types of projects and the questions that people are concerned with on the front end, so thank you for that.

Tammi, what about you? What were your concerns and how did you kind of work past them?

Tammi Stauber
We definitely had our hesitations and fears. We consider ourselves very shy people. And our first fears, of course, were would people come, as you mentioned, Robbie, and what project could we do that would encourage people to come. Would it be more rejection? So our mentor encouraged us to break it down into a small part. Just take someone friendly to coffee. And we thought, "Well, we can do that."

Someone who shared a passion or interest, and boy, those 400 to 500 bird calls that Kyle knew, that was what boiled to the top right away. There are lots of bird enthusiasts in Cincinnati. So we took one friendly birder that we knew took coffee, and he was so excited. So many ideas and magic bloomed out of that one conversation. When you talk to other people about their gifts, it's just the magic just grows. So for us, it was picking a passion and just taking one person.

Robbie
Yeah, It starts with one. Something Carol Combs, who again, leads the Family Leadership Network, something she said at the last podcast was that the answer's always going to be no unless you ask the question, do you want to participate? And that to me is akin to how the magic grows. When you find that one person who shares that interest.

So during your project, Achsah, what was the one key or surprising thing you learned about yourself and about your family during your first project and your community? What can you tell us about that?

Achsah Fitzhugh
Well, I was surprised by the fact that Ahustin was a leader in the project. He just got in and just did everything he wanted to do without any type of redirection or any help needed, which my mind, I always thought Ahustin would always need help from me. But guess what? Ahustin showed me that he did not need me to lead. And because of the project, Ahustin is the ultimate leader in our community. People actually go to Ahustin and ask Ahustin, "What's next? What are we going to do next week? What are we doing next month? What are we doing? Versus asking me anything, they go to Ahustin. He's not being directed. He is the direction in our community.

Robbie
That's awesome. A couple of sessions ago, Carol Combs shared that after her family projects, before they had done a project, when Carol would have to call for EMT support, the medical professional would just deal directly with Carol and not with Grayson. And then after those projects, Grayson became a person to them. And then the conversation shifted. Right? The narrative shifted. It was a word shift. It wasn't, "Mom what's going on?” Instead it was, "Hey, Grayson. Yeah. I've seen all those cool things you're doing over at Jefferson Park. How can we help you today?" And it was uplifting. And Carol probably didn't think that anyone would address Grayson in that manner. And just like you with Ahustin, it must have been super empowering to have someone say, 'Hey Ahustin, what's the next plan?" And for you not to have to jump in. So that's great. Thank you so much for sharing.

Tammi, what was a surprise that you experienced or maybe a takeaway?

Tammi Stauber
I have two. One, I can take someone to coffee. I can actually do that. Number two, I can start to have people come into Kyle's life, real friends, who are not paid to be there, who share interest with him, who will surround him and care about him when I'm gone. And that's probably the most powerful thing that has happened during this whole Starfire adventure. The community, what I learned is that they're friendly. There are friendly people out there, not everyone, but there can be friendly people. And Kyle's known as a birder now in Cincinnati and people know him when we go on hikes. So he's named and known for not autism, but for just being a birder.

Robbie
That's huge. Nithya, what about you?

Nithya Narayan
I think for us as a family and for Vineet, [it was seeing that] his greatest gift is bringing people together. And we could do that around hip hop. That was something that I discovered that I could do that. I am from India, and have no clue, anything, nothing about hip hop! So to bring people together around whatever his gifts are, whether it's cooking, whether it's dancing. He loves hip hop dancing. So to bring people around his gifts, whatever it may be, it can be done through the support of people in the community. We didn't know anything about hip hop, but then we reached out to the people where he was learning. So we could do that through the connections with others. So I think that was a big learning for me.

We did a couple of projects. And the other thing that I noticed was one of the community members who came to our event, told us, "Oh, I'm here to make connections."

And I'm like, "Isn't that why I'm doing this?" So there are others, champions in the community, who want this too. It's just not from our end. There are people who support this. So that was a great discovery for me by doing this project.

Robbie
’I'm here to make connections.’ That's it. That's the mission of the organization, and I love the fact that you heard that. That's fantastic.

We have just a couple more minutes, maybe share with the group, the effect that Starfire has had on your ability to build relationships with neighbors or caregivers or the disability system. Have you noticed a difference since when you began with the program to now? Asha, you want to take that one?

Achsah Fitzhugh
Sure. I would say that I definitely am thankful for the opportunity to even have the project, because right now, because of that one door, we now have a movement in our neighborhood called “Operation Hello Neighbor”, that Ahustin named because of that very first [Starfire family project] event. And now we're known as Operation Hello Neighbor. And we would have never been able to change our narrative of being the family with a disabled child if we did not have that opportunity. We would have been always seen as the broken family on the street, but we're not. We're now the family of Operation Hello Neighbor and we're addressed as such, which is major to be seen with a title. We definitely gained power in our movement, in our community project. So I'm thankful and I'm walking around with power because of the opportunity.

Robbie
That's awesome. I'm so glad to hear that. Nithya, what about you?

Nithya Narayan
Couldn't agree more, Achsah. I think I have just become brave enough to ask people around me, around my neighborhood, around my community to share our gifts to bring people together. So I think that definitely has helped me become more braver. And I think the cost that we were paying was isolation and loneliness for Vineet. So definitely I am not concerned about that anymore because there are so many freely giving relationships and connections in the community. We just have to keep asking people around us to come together and to share their gifts.

My concern was, how am I going to do it living in West Chester, Pennsylvania. Right? Starfire is in Cincinnati. So I think I was able to be online, attend virtually a lot of things, learn a lot of things. So I think it was a big segue into learning more about how to bring more people, not only into my son's lives, but for us, ourselves as a family, so that we are not isolated because of disability.

Robbie
Yeah. I really like what you said about, "Hey, I'm in Pennsylvania. You guys are in Cincinnati. How is this going to help me?"

And I think the only good thing from the pandemic, other than the vaccine, of course, the best thing was the connectivity that we all found with Zoom. So I'm really glad to hear that you were able to take some of those learnings from this Cincinnati based organization. And over the last couple of years, we've seen a huge demand for these services, for these community building and family network services. Not just in Cincinnati or the tri-state region of Ohio, Kentucky, and Indiana, it's growing. The movement's growing. And that's very exciting.

Tammi, what about you? Was there an aha or a huge takeaway other than the fact that it started with one? You found one person for coffee who could talk about birds and that led to a whole host of connections for Kyle. Anything else?

Tammi Stauber
For us, we tended to focus on passions as we moved forward, because that worked for us with the birding community. Kyle's an artist, so we're reaching out to the art community. My husband likes rocks, geology. So we took Kyle to a geology group and Kyle didn't like it. And that's okay. We've learned. We're building some muscle to reach out to all kinds of passions in our family and see what genuine connections. Maybe it leads to a relationship, maybe not. Maybe it leads to a friendship, maybe not. But we're getting to be known out in all of those different areas that Kyle likes and Scott likes and I like as just people who enjoy those passions instead of the family with autism. And like Asha said, we're building a new identity for Kyle. And as Nithya said, we're leaving that isolation and rejection behind.

Robbie
Well said. And thank you. Thank you all so much. If you, or a neighbor or a friend or a work colleague has a loved one with a developmental disability and you want to know more about our program, reach out. If you are an ordinary citizen and you want to learn more about our program, reach out. If you just want to support our work, that's fine too. We're going to be 30 next year, believe it or not. So we're going to plan a whole host of fun things to commemorate our 30 years of service. You want to engage with any of that, we'd love to have you. So thank you very much.

This the fifth of a six-part series.  Link to Part 1, Part 2 and Part 3 and Part 4.

Bridget Vogt has spent the past few years studying what is known in our field as “trauma informed care.” 

Simply put, she has learned that when bad things happen to us, especially as children, our brains grow in response to it, seeking out stability and safety.  Over time, we are wired to relate to ourselves and the world around us partially by the things that hurt us.  The more of these painful experiences we have, the more our behavior might show up as a problem, for us, and for other people.

Bridget first started studying it as a way to empathize with people, especially people with disabilities, who were labeled with “bad behavior.”  She learned powerful and important ways to understand what someone might have been through, and even better, learned how to relate to them and to create experiences with them that might help them heal.

It’s a rich, deep, and emerging field of understanding human beings.  All of us would benefit from learning more, in particular about resiliency and the kinds of things that help us integrate our painful histories and move forward in good health.

One day, Bridget showed me a list of “Traumatizing Events.”  The first half of the list was familiar to me, headed by the clinical term “Adverse Childhood Experiences” (known by the social service acronym as ACE Scores).  Things like “abusive parents,” or “food insecurity,” or “death of a family member” were on there.  “Drug abuse in the house,” “sexual assault,” and “family member in jail” were also listed. 

I wasn’t surprised.  These are horrible things for children to go through and I could easily see how any number or combination of those things could disrupt a kid’s development and lead to a tough future for them.

But that wasn’t what Bridget was showing me.

Below that chart was another chart:  “Adult Stressors.”

It was a list of experiences that caused trauma for adults.

I could have guessed the first few:

• Death of a spouse or child

• Incarceration of self or spouse

• Diagnosis with a terminal illness of self or spouse

But there, sitting near the top, below those horrible experiences, was something that stopped me in my tracks. 

• Birth of a child with a developmental disability.

My world was rocked.  Bridget and I looked at each other, but neither of us could speak.

We had both been working to advance inclusion of people with disabilities for 20 years at that point, and this was a new perspective we had not really considered.

At first, we were mad, and we wanted to reject it altogether.  But ignoring the reality of how the world sees “disability” has never been a strategy for us.  That’s dealing in fantasy, ignoring the real work of what we’re actually up against.

The more we thought about it, the more we knew that it was real.  Almost every single parent of a child with a disability we knew was in some kind of “special needs support group.”  Organizations offered trainings in “dealing with a diagnosis” and “coping with grief” of the birth of a child with a disability.

But even though we knew it was real, we knew we had to resist it.  We knew so many good people and we had spent decades helping discover and develop their gifts to offer the world.  And we saw evidence of ways their families’ and neighbors’ lives were better off because of their birth.

No, it wasn’t the birth of a baby with a disability that was causing the sadness.  What caused the sadness was a culture that made the lives of people with disabilities and their families hard.

That was the true source of trauma.  A culture that said your child didn’t belong, or that there was something so wrong about them that only experts would want to be around them, no one would ever want to hire them and they’d never have friends.

That story our society was telling about disability was the problem.

As we worked on developing the Four Commitments, we knew the story the world told about disability, and we knew that if we were going to take a step in a new direction, we needed to step away from the culture of commiseration that surrounded families of people with disabilities.

We had to step into joy.

It felt radical to write that word down, almost like it wasn’t allowed.  And it felt risky to name commiseration as something to turn away from, especially because we believe in empathy and embracing vulnerabilities as a way of gaining strength and relating to each other. 

But while it’s important for people to share shoulders to cry on, knowing the tears were misdirected toward a child with a disability was something we just couldn’t bear.  

So looking for and embracing joy became our 4th and final commitment.  And it’s shown to be one of the most powerful. 

When we state it out loud and follow that with directing our sadness toward anti-disability culture, everyone in the room breathes easier.  Some people find it takes a load off of their heart, almost as if they knew there was something wrong about seeing their child as a problem. 

And that joy keeps growing.  Families of children with disabilities have found the joy of friends, allies, and co-conspirators who want the same kinds of communities they do.  They’ve discovered a new purpose in their family.  They’ve learned to see their children in a new way, and found a way to balance and channel their disappointment into action that brings a new energy.

The projects build new patterns and healing rhythms.  Their connections with others around positive experiences in their community helps remind all involved of the gift their lives are to each other, and living it out creates sense-embodied memories that last.

That’s the healing power of this commitment.  By looking for joy, and resisting the temptation to point our fingers at people with disabilities as the source of a family’s sadness, we are taking an important step toward social justice and building a more decent world.

We are noticing the role our culture plays in leaving people with disabilities out.  That places responsibility on all of shoulders, rather than sitting around blaming the victims for what’s happened to them.

And it elevates people with disabilities and their families from the role of “client” or “recipient of charity” or “problem” into the role of colleague.  They step into their rightful place of partner in healing the very culture that’s hurting them.

And how do we start to heal a traumatized culture?  The same way we start to heal a traumatized person:  new patterns over time, full of relationships, reflecting and affirming everyone’s strengths, with rich sensory experiences that give us moments and memories of the goodness of a connected life.

Sounds like Starfire community-building projects, right?