This the fourth of a six-part series.  Link to Part 1, Part 2 and Part 3. Links to subsequent parts will be updated as they are released.

If you gave me a million dollars, and I had to make a bet on whether the family of a person with a disability, or the person’s service workers, would still be around in 20 years, I’d put it all on the family.

And I’d win easily.

I could probably win even if I made the same bet on who would still be around in two years!

It’s just the nature of the service system.  Those of us working in it move in and out of jobs. 

During the summer of 2017, I started giving out project grants to 10 families. During the same summer, we hired four new employees to work as community connector staff. 

Within two years, all four of those connector staff had moved on to other jobs or different locales.  They were replaced with another six people over the past few years, all of whom have also since moved on from our payroll. 

All 10 families were still in the lives of their child with a disability.  And all 10 families are still connected to the people they met leading their projects and the values of community inclusion.  We hope the staff are still connected to those values, and they likely carry them with them, but there is no way of really knowing. 

I gave out a total of $30,000 to those first 10 families, along with another $60,000 over the next few years for a total of $90,000 invested in over 30 families. 

We paid those staff over $600,000 over the same timeframe.

That’s the reality.  Our system of services seems stable, but only in the same way “Wal-Mart” or “Coca-Cola” seems stable.  It’s a brand that we come to know.  But behind the brand is an ever-changing, morphing team of people, coming and going.  Good managers, bad managers. Hardworking committed employees and people just in it for the paycheck. 

That system of a steady brand works well for a product.  There is one good way to make Coca-Cola.  There is an easy, replicable system for running a successful Wal-Mart.

But that model isn’t up to the challenge when the product is “support for a human being,” as it is in so many of our social services. 

And yet, according to a recent study by the Kaiser Family Foundation, we are betting over $116 billion on that model to provide home and community based services to people with disabilities and our community’s elders.  And that doesn’t even count state, local and charitable funds!  I’m not sure, but guess that including those funds could push the bet to over $200 billion annually.

Imagine investing all that money and training and support in the longevity and love that a family offers.

Don’t get me wrong.  I believe in the power of good, well-paid, deeply trained support workers.  In fact, I’ve had a front row seat to the powerful work my colleagues at Starfire (and elsewhere) have done over the years.  Many of them had a deep commitment to the work and helped make beautiful things happen in peoples’ lives.  Especially when there was no family present to step up.

But as I write this, our field is experiencing what is being called a “workforce crisis.”  There aren’t enough people to work the jobs needed to support people, and there isn’t enough money to keep up with rising wages to remain competitive with other industries.  Some of this is a result of the pandemic.  Some of it is a result of failed immigration policies, or other forces of economy.

But those families weathered the pandemic.  And there’s no need to rely on immigrants to replace parents and siblings.  Just imagine what might be possible if we put those resources behind families.

Families are just a better bet.

I recently sat down with the mother of a woman with a disability.  We have known each other for decades, and she and her husband have always fought for their daughter to live a life outside of the one offered to her by the service system.  I admire them deeply, and have learned much from their example, so accepted her invitation to chat. 

When we sat down, she showed me the brochures of all the social services for people with disabilities she had been exploring.

“Tim,” she said, “We’re getting up in years and I need to start exploring what’s out there for our daughter.”

She told me about her other children and how they had offered to take in their sister if the time came when their parents couldn’t care for her.  I wasn’t surprised as they were simply following the beautiful path their parents had laid out over nearly 40 years.

“Are you taking them up on that offer?” I asked.

She winced. 

“I can’t,” she said.  “We can’t ask that of them.”

We talked more about her deep belief that none of these services were good enough for her daughter, and that all the best things in her daughter’s life were a result of being included – in school, in work, in the surrounding neighborhood.  We named all the people in their lives who were a regular part of her daughter’s life, and how much they meant to her. 

And then she said something that shocked me.

“I guess I just feel badly.  I thought over all these years, I would be able to come up with a plan for our daughter, to give to her siblings.”

For 40 years, this mother had done everything she could to help their daughter live, work and play in the world as an ordinary, everyday person.  She and her husband had built a regular life for and with their daughter, not a “special-needs life,” surrounded by therapists and counselors and caseworkers and staff people.  It was a beautiful, connected and shared life that they had lived together.

And she didn’t think she had a plan!

“You did come up with a plan!” I said.  “You came up with the best plan I could ever imagine. You planned a life for your daughter that included her in the world.  And not only that, it’s stood the test of time for 40 years!”

It had already outlasted any other plan any social worker, myself included, could have ever imagined.  It had outlasted at least 125 of my colleagues at Starfire, and many hundreds of other staff at the other organizations her daughter was connected to.

The only thing her plan couldn’t outlast was time itself.

I admired that mother’s commitment.  I began to wonder if other parents making a similar commitment, even in just a small way, was a good thing to help them work outside the status quo of our systems and societal notions about disability.  Her daughter still attended Starfire programs, and still had various supports from the system, but through her commitment, she had carved out a life for their family that was completely and uniquely theirs.  It was sacred and beautiful.

It occurred to me that inviting her other children into the commitment and plan she had found so much meaning and satisfaction in might be a gift to them.  Maybe it could offer them something beyond the task of managing a rotating cast of social workers, which would always need doing, but could never bring them meaning and satisfaction.

“What if you handed that plan off to your other children?” I asked her.  “Tell them about why you’ve carried it out, how you think about it compared to other plans, and how it’s worked out for you?”

She wiped her eyes, and I wiped mine and she pledged to talk it over with her family.

I’m putting my money on that family.

So why don’t we bet on families in a bigger way?

When I started giving out project budgets, and paid families a stipend for managing the project, I had all these doubts in my head:  What if they run off with the money?   What if they blow it all at the liquor store?  What if they don’t do the project perfectly?

Those fears stopped me in my tracks, and I almost never launched the program as a result.  The only thing that brought me confidence and clarity was that I was certain that all those 100+ people on our payroll had surely blown at least some of our money at the liquor store over the years!  And many of them stumbled and bumbled on their way to learning the work. So perfection, whether it be of moral expenditures or professional aptitude, was certainly not required.

Families often seem to sell themselves short. I think some of that comes from people like me in the service system.  I worry that sometimes we wield our “expertise,” our degrees, budgets and job titles, in a way that crowds out a family’s confidence in their own competence.

One dad once told me he feared his son was “unknowable and unlovable.”  He was working on developing a family project and was worried no one from his neighborhood could really connect with his family.

I told him he had evidence that citizens could come to know his son and care about and for him. 

“What evidence?” he asked. 

“You,” I told him.  “You know how to have meals with your son, how to go on vacations with him.  How to spend time with him.  How to worship with him and how to do chores with him.  And you were once a person like your neighbors, who didn’t know all of that.”

“But they don’t live with him,” he retorted. 

“True,” I said, “But all they need is time and touchpoints, like you, right?  It’s just not as intense of a timeframe like you had.  So we have to get started now so they can experience those things and grow in those ways.”

That father, along with his family, has done at least four community projects that I know of, likely more. And his son has some solid connections growing with neighbors and friends as a result.

Before the family projects, though, our staff did all of the work of a community project for families like his.  And when our staff left, as they inevitably did, they largely took all the fruits of those projects with them.

That’s the basis of the commitment to look for the free gifts of community, rather than hire a staff to do it for you.

Families have found neighbors they can count on.  And they get to keep those connections, for themselves and possibly for their children with disabilities. 

And even more importantly, by doing the projects themselves, they get to learn the lessons and strategies of being community builders.  They discover gifts of people they never knew before.  They get to learn how to depend on their community and be dependable for their community.  They get to work as a team with other people to create something new and enjoy the pride of having done it.

They get to live their lives in connection with others, rather than waiting on someone else to do it for them, which would never be possible anyway.

One of the first times I ever met John O’Brien in 2011, I presented him with some questions that had been bothering me and I wanted his thoughts on.

I offered him this “true or false” statement: “Families just want to be families, not warriors, so conversations with them about Social Role Valorization, Person-centered approaches, citizenship vs. clienthood, could be putting too much on them.”

I waited for him to say “true,” or “false,” but unsurprisingly, he answered with a clarity that I wrote down, word for word, and have never forgotten:

“If families delegate relationships for their children to the service system, they will always be disappointed.”

I originally made sense of that statement by assuming that the service system would just do a much worse job than families expected.  While that’s a reality, over the years, I’ve come to understand a deeper meaning in it.

Families who I’ve walked alongside as they do a community project, relating and celebrating, planning and playing with their neighbors, are never disappointed.

Sure by making the commitment to do it themselves, with their community, outside of services, they give up having others come up with ideas, make all the decisions and carry out the work.  That’s awfully convenient and terribly tempting.  A paid staff from the service system can shield a family from social rejection or disappointment.  But the choices we offer as a system are always the ones that work for our us:  within our budgets, during our work hours, and centered on our goals.

By doing it with their community, families get to create options beyond our programs, and they get to work on their own terms, in the way that works best for them.  It may not work as efficiently as hired help, but they get to own it.  And as families have kept at it, they’ve been surprised when people they never expected show up in their lives.

Even if the project goes sideways or changes, or even if they only get half the attendees they hoped for, they are always happy with their effort, and satisfied with what they learned on their journey, about themselves, about inclusion and their child, about their community.

So we ask families to make the commitment to do it themselves instead of delegating it out to a service system.

They end up getting to keep the treasures of their community and the fruits of their efforts all to themselves, and that makes them a stronger family. 

And that is always a good bet.

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 called "More." I'd like you to meet Carol Combs and Hadia Khan and Angela McArthur. These are three of Starfire's family mentors. As family mentors. They guide families of children with intellectual and developmental disabilities to nurture relationships based on common interests versus disabilities and beyond paid staff. As parents of children 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 children and loved ones by creating and launching inclusive community projects. They've gathered here today to share the how of participating in the Starfire Family Leadership Network, from how they define community, how they invite others to join and how they support connections that grow into relationships. I wanna start and take 30 seconds and introduce yourselves. Angela, why don't you start us off?

Angela:

So I'm Angela McArthur. I am in North College Hill and my daughter, Julia is nine. She has achondroplasia, which is the most common form of dwarfism. She's my one and only child. So she's spoiled rotten because I'm also an only child that makes her the only grandchild. One thing our family is known for besides advocating for dwarfism is the splash party. It's people driving by would stop. So it was definitely an eye catcher, for sure.

Robbie:

Love it. Hadia, give us your elevator story.

Hadia:

So I'm Hadia Khan my son is Khalid. He's my only son, too. So Angela, I agree with you. Our kids are spoiled like anything. And at times I think my husband tells me I spoil him and I tell him he spoils him. So both of us in the midst of everything, he gets spoiled a lot and he just started high school. So already we were asking him all bunch of questions yesterday. So by the time he got home, it was 5, 5 30. So my husband was like, how was your first day? And he just said, guys, gimme a break. And we were like, okay, he's a teenager. He's our pride. And our joy he's nonverbal, he's deaf. He wears Coch implants. He has a blood disorder, but he made us who we are today as parents. And we are proud of him, how far he's able to accomplish. We were told he might never walk. He took his first steps when he was five. He uses iPad as a speaking device and is a sassy teenager.

Robbie:

And he has two great parents. And that's awesome. So we just learned to walk when he was five, our grandson is five and he's taken his first steps this year. So rock and roll. Hey Carol. Tell us your story.

Carol:

Yeah. So I'm Carol Combs. I live in the city of Hamilton with my three amazing kids, Bri, Grayson and Charlie Grayson is 14 years old and he was born with a developmental disability called CEP. And currently our family is known as the people on Cleveland avenue that always have a rock and porch. And so we are constantly out on the porch meeting and greeting our neighbors and they are counting down to Halloween because we do all things Halloween. And we are the house on our street that has the coolest decorations. So that is currently what our family is known for. But we're also known for activating spaces across the city of Hamilton and being super engaged with our community. We have found our place of belonging and we love it. And so that's who we are and what we're known for

Robbie:

In addition to being a family mentor, Carol is also the coordinator of the program. So Carol let's start us off.

Carol:

Yeah, let's do this. So I head up the Family Leadership Network here at Starfire. It's 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's really about discovering interest and identities beyond disability. And it's a place where families become named and known in their communities to create connections that spark real life, meaningful relationships. Part of the family network, there's three essential support. So you get free monthly one-on-one mentoring sessions with a Starfire family mentor, which is someone who has done a project themselves and has stepped into community to do the work alongside their family, free resources, such as community design sessions, community story hours, and the families at the center of a connected community training, where we can just begin to build our muscle around what it takes to build community and connection.

Carol:

And then each family that participates in a project gets a family stipend just as a way to activate and do something really cool and fun in their community. The four commitments is a foundational component of our work and they serve as the guardrails for our family projects. These really help families step into a space where they can create something new and fun. That's unique to them. The four commitments ask families to discover community gifts, not fix what's wrong, create something that belongs to them and their neighborhood. Not anyone else it's about growing connections in your community and not recreating the old service models. And it's a focus on joy. Not commiseration family projects can be big or small. Some of the things that we've seen families acted do and activate in their community, backyard barbecues, outdoor movie nights. So in play at a local park front porch, concerts, art days in the park, the possibilities really are endless and it's really up to the family to decide what their family project is and what it'll become. And what happens is it supports them in becoming named and known in their community.

Robbie:

That's an excellent segue to sharing how. We've got Carol, Hadia and Angela on the podcast today. And let's start with Hadia. Hadia, talk to us about how you define community in your world. What does that look like?

Hadia:

So my idea of community has changed over the years. So I'm originally from Pakistan and I thought community is the people with similar cultures. And what I've realized is having a special needs child is a community of its own. We have a community in children's hospital for my son. We have a community with our neighbors. We have community with our doctors and the teams. So for me, the idea of community has really changed. It is what we give to our community. They own us and it's us who need to go out and express to them that we want to you to help us and help us understand how we can be more productive. So when we did the Starfire project, it helps us to guard out of our comfort zone. We always wanted to reach out to our neighbors, but we always have that hesitancy.

Hadia:

Will they accept us? Will they understand? Because we are the only special needs family in our community and our neighborhood. So once we did our project, they actually asked a lot of questions about what my son's needs were and how they can support. Even to the point when my son is cycling in the neighborhood, he gets a zillion high fives. So for me, that is my community where my son is able to thrive with his own abilities. When we started doing that, we realized that, you know what, my own community, the religion I belong from, the culture I'm from, I was not opening as much to them. So then I started to reach out to them as well. How can we help to eliminate all those barriers? So then my community was open with open arms. They were like, so what can we do differently? So we started a small project of starting a support group within our mosque. So for me, community is whatever you make out of community. So for me, it has changed. It has evolved and I'm proud to be a part of this bigger community. So it's all because of them that we are able to not only give back to the community, but connect with amazing people who help us be better human beings,

Carol:

Your son's a connector. He is a very strong community connector and builder

Hadia:

And it's him because he loves people. He cannot sit home. He has to meet people. He would say good jobs and high fives to everybody who's there. So he's the one actually pushing our comfort zone. For sure.

Robbie:

I'll take a zillion high fives and a group of people asking how they can help and asking the questions that they don't maybe even know to ask. So thank you. Thanks for sharing that. Angela, what about you? How do you define community?

Angela:

I thought in the beginning that it was all about geography. It was just a border of your city, or maybe you could have a church community, but I didn't realize that it's not something that's just happens. I always thought the neighborhood I grew up in, I knew my neighbors, but then when we moved, I didn't know my neighbors anymore. And so community actually is something you have to strive to connect with. Like Hadia said, you have to be willing to extend the invitation, to invite people to your community and work on it yourself.

Robbie:

It is. That's a good pivot. It's not just about geography anymore. Gosh, especially with the pandemic. I mean, the things that we can do online now that we could have never done before work is a great example. And building community is another and nothing beats the face to face, which is a good segue to you. Carol, tell us how you define community.

Carol:

When we first started as a family with Starfire, it tripped me up a little bit. I'll be honest because Angela, I thought it was geographic. And so anytime I heard the word community, the infrastructure of community popped up. John McKnight, one of the mentors said I got to work alongside of, for part of our journey has this great definition of community. And he says that community is just people in relationship. And when I heard that definition, it really supported me in thinking about, oh, well, yeah, this is doable. We can like people in relationship. We can do that. We know people. And so when I started thinking about community in that way, we now define community as those around us, the people that we're in relationship with and the people that we want to make connection with. So for us in the city of Hamilton, it's not just our immediate neighbors, but it's people we've met through the project process that have stepped into the space of knowing us and loving us as a family.

Robbie:

Super well said. I know you've done a number of projects, Carol, in the Hamilton, Ohio community. Talk to us about how you invited people in, especially that first time.

Carol:

Oh man, it is so scary. I will be the first to admit that extending invitations was super scary. And what we did was we just took it and baby steps. So the first invitations I extended were to people that we knew because they were easy. We knew that they would probably say yes if they were free that day to join us for sewing. And that gave us courage to expand a little bit more and post on our local community sites, that we'd be popping up to sew at a local park. And as our time in the community progressed and we got to meet more people, we started extending invitations at the actual event too. Like, Hey, we'll be back next week. Please come back and join us. We would love to get to know you more as we shifted from. So in play to some local events at a park, right next door to our house, we just used those connections that we built. And we started again with the people that we thought would say yes, because that helped us build our muscle to extend an invitation. We got some nos along the way, but we also got yeses. And what we come to realize is that it was always gonna be a no, unless we asked. And that helped us gain some courage and extending invitations a little bit further and wider as we went along.

Robbie:

Always going to be a no, unless we ask, that's a pretty powerful line. Hadia. How about you? How do you invite others? Neighbors, friends, colleagues. How do you invite them into your space?

Hadia:

I think girls said that the first steps are hard, but the community is willing to accept us with open arms. The second I shared my idea with my neighbor, one of my neighbors, she was like, oh, I know the other neighbor. And she works with McDonald's. So they have a couple of me got on. So she's very popular in our neighborhood. Let's connect with her. So she actually connected me with the other neighbor. So when I talked with her, it is all within three, four hours. So when I talked with her, she was like, oh, oh, we have community book club for our neighborhood. Why don't you come for tonight? I'm like, are you serious? So within five hours I was invited to a book club or for which I never knew existed. So the second I was there, I got to meet whole lot of other neighbors.

Hadia:

And then I shared the idea that this is what our plan is. And all of them were like, how can we help? What can we do? So the person who had couple of McDonald's, because I deal with this company, they have those jumping castles. Why that would be a good idea, so I can give you their numbers. So she connected me with that and she was like, you know what, I'll bring some McDonald's chicken nuggets. So the other one was like, you know what? I can help. I have four folding tables. I can bring that. Everybody was like, how can we help? So what is the date? Then we decide with the date that somebody was out in the, because it was closer to Halloween. So we just wanna make sure that it was not coinciding with the trick or treat people, making sure that everybody was available because for all people go out for short breaks.

Hadia:

So making sure everybody was available, then they were like, all right, how can we help? So my neighbor who was next door, she and I both were working from home. So on our lunch break for, I think five or six days before the event, we would go to Costco to grab ourselves together. And then we didn't even have that much time on our way to eat something together. So we would have our lunches to go and come home and finish our lunches at home. But just that comfort zone that we can just go run and grab some stuff for that made us feel so closer. Then we had pandemic was still very active at that point. Two of the people who majorly was involved, they ended up having COVID. So I'm like, oh my God. So we didn't wanted to accept their food, of course, because what if somebody gets sick because of us?

Hadia:

So literally five hours before the whole thing, we were like, how can we reach out to other people? So it was just only if we asked, there were so many people willing to help, and I never realized that it was that approachable. And even when we made the cut, so me and my son went to all of the neighbors and put the flies in their mailboxes. And I think our event was a week after Halloween. So when we went to trick or street in the neighborhood eat, and every neighbor told us, we are excited for the neighborhood party. And luckily our Alde SAC, we have every culture, religion from Chinese to Japanese, to African American, to Indian, Pakistani German. We have 30 houses and we have all the culture. So the good thing which happened was everybody brought something from their own culture. So that was so fascinating.

Hadia:

Some of them were snacks, some of them were sweet. So that was a fact which really kept me in awe that, you know what, we should have done this long time ago. But it was a small thing that brought us, everybody. There were some neighbors who were in the community for almost 20 years and we never got to see them. So everybody got to know everybody. So many of them had the same likes and dislikes. So now my neighbor knows that how much my son loves McDonald's nuggets, every birthday, she gives him $50 McDonald's gift card. So it's just the smallest things that were a long way for us.

Robbie:

Yeah, absolutely. And the fact that everyone coalesced around the idea, because there were a few of you and what's the adage about many hands make light work. So everybody had a stake, but it wasn't overwhelming. So yeah. That's terrific. Angela, how about you? How did you invite people in

Angela:

It's a little bit twofold for me. So for our event, we had a splash party. And so in order to invite people for that, we just sent postcards to all of our neighbors and went extremely vulnerable because this was right at the beginning of COVID and we didn't have the advice of Carol that it would be always a no until you ask it was just assumed that everybody was going to say no, and it was so impressive once you just opened yourself up and allow other people to help just how awesome people can be and step forward. And then the second way that I invite people is by saying hello, or I get because of COVID and working from home, I get to walk my daughter to school now. And so all the kids, we walk to have their head down, they're frowning, they're going to school and I can still say good morning to them. I can still get them to raise their face a little bit to where they start to recognize me. And they start to actually initiate the conversation in the morning, which is fantastic.

Robbie:

Yeah. That's awesome. Just awesome. So, Carol, I know you've made a ton of connections in the Hamilton Ohio area that maybe you wouldn't have made, if you hadn't taken that brave step of doing the sew and play party and then activating an old lot that needed to become green space. So I know you've made a lot of connections. How do you nurture those? How did you support those connections to grow 'em into relationships?

Carol:

I love those question. Robbie. I first wanna say for myself and the kids it's different. So the way that I build relationships is different than the girls build relationships, which is different than the way that Grayson builds relationships. The girls have very outwardly facing gifts and they're able to take a connection and foster that into a relationship of their own based on interest and talents and passions for grace and for, to build relationship with him, it's a little bit different. His gifts are more inwardly and I support him in several different ways. So one way, because he communicates differently, I model for those connecting with him for the first time, how do key in, on some interest and talents. And so I'm like, oh, Grayson, look, they're wearing a red shirt. We love the reds. And from there, we're able to loop the conversation back to Grayson so that him and the person that we're connecting with start to build a relationship.

Carol:

And then we just foster along the way. So I'm constantly seeking out opportunities just to be present in somebody's life, whether it's dropping a card in the mail and letting them know that as a family, we're thinking about them or dropping something off to the porch, because I know an important day is coming up. Really. We seek out those ways to welcome people and then build upon those common interest. So for me, a lot of the common interest lies within our love of the city of Hamilton. And we build upon that our front porch is one of the most welcoming spaces. And so we invite people over to sit on the porch with us and talk so we can learn. And that's really how we've taken those connections and built them into relationships is we're just constantly as a family, seeking out ways to reconnect and connect more on a deeper level and let people know, Hey, we wanna get to know you and we want you to get to know us. What does that look like? So that's how we've been approaching, taking connections and fostering them into relationships. It's a process. And our goal as a family is just to add one new relationship each year to our family. And when we think about it that way, it feels really good. And again, it feels doable. We can invite one person in deeper into our life every year for the rest of our lives.

Robbie:

Very good. Thank you, Hadia. I know you've made connections that you didn't have, especially in the neighborhood. Your comment about there were some neighbors who had been there for 20 years and you hadn't had a chance to connect with them. So how are you nurturing?

Hadia:

So for me, the biggest challenge was that I am beyond a special needs mom. So I'm a human being. I love to shop. I love coffees. So what I did was that I made sure that I am part of so many boards and I sit on so many meetings. I have this personality of being the best caregiver for my son and be his voice. But again, I am my person as well. I have my own personality. So when I'm with my neighbors, my son's disability is not there. I am a regular mother with the same challenges, any teenagers have. I don't want them to feel sorry for them. I don't want them to know that they have to provide a shoulder to me every time I love music. I love watching movies. So I am beyond just a special needs mom. So when I'm in the community with my neighbors, that's what we focus on.

Hadia:

My son loves his lunch boxes. And when the pandemic was there, they had free lunches. So everybody was talking about how the kids were eating everything. And even with free lunches, they were spending money on because they thought everything was free. So we shared those stories are how our kids would never eat anything, but we send them for lunch. But once it was free, everybody was like, let's just have a party with the school lunches. So when I connect with my neighbors, I make sure that they get to know me as a human being as well, rather than just a special needs mom. Because by the end of the day as special needs parents, we wear so many hats. And 90% of our life is making sure that we be the voice for our kids. We advocate for them. We are there fighting for them, but some of it, when we go out in the community, when we are with our kids, we are that special needs mom, but they got to know me as an individual as well.

Hadia:

So now when we have our block parties, so we it's with our kids, but when we have our book club, it's just the mothers. So we have coffee nights. We have movie nights. We go out for restaurants once in a while. So that's the beauty that it doesn't have to be focused on special needs only. So I don't want them to understand that being a special needs, parents is being depressive or, you know what I have that needs that every time I'm gripping about something, I enjoy my son and I'm proud of who he is. But on the other hand, any other mom, I would like to have a separate life where I can be a regular person and regular human being enjoy life as well.

Robbie:

Yeah. People are multifaceted just as relationships are and they have to be nurtured and their give and take. And Angela, I loved what you said about, you were just surprised at how simply awesome people could be. So I know that you are walking a child to school now and having an opportunity to greet people and maybe being the second friendly face that person sees before they get on the bus or heads into school. How else are you nurturing those connections into relationships?

Angela:

I think it's being open, being available and being open. We do a lot of work to advocate. My daughter has dwarfism, so we do a lot of push about what language is. Okay. And what language isn't. Okay. Just so that she can feel comfortable and not feel offended or anything like that. We do also advocate for the porch, just like Carol, does we have bubbles? We have chalk on our porch. So that way anybody who wants to come over, grab some, even if we're not outside, go have fun. Be together and just be open and available.

Robbie:

Yeah. That's terrific. Carol Hadia. Angela, thank you so much for sharing your time and your story with us today. About how of the Starfire Family Leadership Network. I can't thank you enough for helping inspire others to join us. And this has been an episode of the Starfire podcast, more.

This the 3rd part of a six-part series.  Link to Part 1, and Part 2. Links to subsequent parts will be updated as they are released.

As more and more families did projects, we got stronger around our “Four Commitments.”  We all tried them on, almost like we would a new jacket.  How did it feel?  How did it fit?  Did we prefer our old threads?

Families loved it, once they got going.

The problem for some, as it is when trying new things, was in breaking out of old patterns. 

One family who said “yes” to doing a Starfire project was struggling.  They kicked around dozens of ideas.  What if we turned the empty storefront across the street into a space where neighbors could tell stories together? What if we hosted an event at the local high school theater?  How about the basement of the apartment building down the street that hosts a neighborhood children’s summer camp?  What could we do there?

One day, as we huddled up for our monthly chat, they shared some exciting news.  They had landed on an idea!  They had talked to a bunch of neighbors, at my suggestion, and had heard a common refrain:  There’s no block party in our neighborhood! 

“What do you think?” I asked them.

“We like the idea,” the mother replied, “But we want something with more pizazz!”

They spent a few days thinking on it, and eventually, wisely decided to follow the energy of their community.

“Even though we aren’t all that passionate about a block party,” that mother said with a laugh, “We are passionate about being connected to our neighbors who are passionate about a block party!”

So it was on.

Over the coming months, they focused on planning the party.  They recruited neighbors to design flyers.  They sketched out the space and made lists of all they’d need to host it.  Things were humming along.  They and their neighbors were excited.  And then we ran into an unexpected snag: “who to invite.”

“Do we invite our friends who have children with disabilities?” they asked.

It was tricky.  This family was leading the way in many disability-centered organizations, so their network reflected that.

I was their “project mentor.”  And one of my responsibilities as a project mentor was to say things that I knew might be tough for them to hear. 

At the beginning of each project I helped mentor, I would tell each family “I’m on your side second.”  They would usually look at me, wondering what that meant, and I would explain that my role in helping them carry out this project was to be on their child with a disability’s side first.  That meant, I would explain, that sometimes their best interests and their child’s best interests were at odds, and I would do my best to advocate for their child’s interests.

This was one of those times. 

I knew that in all my efforts to help people build projects, this was one of the toughest.  Keeping it from becoming a “special needs” or “disability” event was critical.  Otherwise, it would just be more of the same, reinforcing the outdated and harmful societal notion that “all those disabled people” belonged together.

But intentionally not inviting people because they had a disability, or had a child with a disability, felt like we were violating the very core of inclusion.

And people would call me out on it.  Some called me “a discriminator.”  Others went as far as to say it was bigotry.  Those accusations always hurt, because I knew it was the furthest thing from the truth.

I struggled with how to help this family understand what was at stake if they took the easy way out.  I worried that I would offend them or hurt their feelings, or they’d think I was too radical and dismiss me.

But I knew the cost their child will pay if I didn’t say it.

So I took a deep breath and said, out loud, to that beautiful family “This might seem weird, but I have to say it,” and I told them the risks of including their “special needs network.”

“If you all decide to open this up to your friends with children with disabilities who don’t live here, who pays the price?” I asked them.

They sat there quietly, thinking it over.

“It won’t be me,” I told them.  “Or any of our Starfire staff. And it won’t be you. If a bunch of people with disabilities show up to your events, you’ll be just fine, for the most part.”

“Our daughter will pay the price,” they said. 

“Yes,” I responded.  “She will lose her chance to be known in this community on her own terms, and will, once again, be lumped in with ‘disability’.’”

They nodded their head.

“And,” I added, “The rest of us are asking her to pay that price just because it makes us uncomfortable to try another way.” 

“I got it,” said the mother, hopefully.  “We’ll say that anyone who lives in our neighborhood is welcome to attend.  That will at least help people know it’s only for people who live here.”

“Great idea,” the father said. “But what do we tell our friends who don’t live here and have children with disabilities? I’ve already mentioned this to a few of them and they said they’re planning on coming to support us.”

“My best idea,” I replied, “Is to tell them why you’re limiting it, and I think they’ll understand.  Offer to help them do a project for their family.  Tell them you’ll gladly not attend, but support them from behind the scenes, and ask they do the same for you.”

“I know it sucks,” I added, “But all families deserve to have their own unique, personal stories.  Including their family, too!”

It was tough.  Families with children with disabilities face a lot of social rejection.  That does two things, over time.  It orients them toward less painful options, like “special needs” events and programs.  It also makes them sensitive to including everyone, an effort to give the gift they wish they were given. 

And here I was asking them to take the more difficult path of risking the social rejection of a non-disability event.  Even worse, I was also asking them to ask other people who’d experienced the pain they’d experienced to not attend.  We all felt horrible, but knew giving up the easier path was worth it to live up to our commitment to make this uniquely for their daughter.

“Will you come to our event?” they asked me.

“No,” I told them.  “As much as I want to be there, soaking up the goodness, I don’t live in your neighborhood.  My only connection to your family is through disability.  Through Starfire.  I don’t want to be the weird stranger taking the spotlight, or even worse, spotlighting your daughter’s disability as the purpose of the event when people ask me who I am and how I know you.”

The next time we met, they had told me about their conversations uninviting their friends who had children with disabilities.  One friend understood completely and hugged them and told them she understood.  The other friend told them he was slightly offended. He insisted that he would still be joining with his daughter with a disability.  The family, understandably, didn’t push back much.

“But you know what’s even weirder?” the mom asked.  “We are getting RSVP’s to our event from families with children with disabilities that we don’t even know!”

It was then that we came to understand the power of the disability-social-media-algorithm.  They had posted it to their social media accounts.  Because they’d spent a lot of time sharing about disability and disability-based organizations, and were connected online to people like me, their posts got shared to other people who were in the same algorithm!

They had worked hard to keep their crowd hyper-local.  They personally handed out flyers, made a sign at the location of the Block Party, and sent texts to their neighbors.  But now all of that was drowned out by what the social media algorithms thought was most significant about their family: disability.

There was no stopping a group home employee from dropping off a van full of people with disabilities at their next event.  What might happen if it gets shared to a regional disability email list as an inclusive event for families with children with disabilities?  It was overwhelming to consider how fast the purpose of the event, to connect neighbors to each other, could get out of hand.

It was an epiphany to me, and I pledged then and there to never share anything on social media about a family’s project.  My network, after all, was also part of that disability algorithm.

“We did have one awkward conversation,” the mother added.  “We were attending an annual conference about my daughter’s disability, and the conference planners shared our project as a hopeful story for other families.  Right after that, a family from Cleveland, who’s son has the same disability as our daughter, came up and told us they’d be coming to the block party!”

“Oh no,” I whispered, and buried my head in my hand.

“Don’t worry, though,” she laughed.  “I had the perfect response.  I said ‘Sorry, our party is only for our neighborhood. But if you want, we’ll help you plan a block party in your neighborhood!’”

“How’d they take it?” I asked.

“Not well,” she said. “But it was quick and we just went about our day.  I think we’re starting to get our courage up around all of this.”

After their block party, they came to see what I meant.  People from the neighborhood met their daughter for the first time, getting to know her name and discovering that being around her was easy and doable.  They loved it and started planning the next one immediately.

The one hiccup came when their friends with a child with a disability followed through on their promise to attend the block party, even though they didn’t live in the neighborhood, and even though they had been asked not to join.

Some neighbors assumed that the two young people with disabilities were best friends.  Some of them asked if the block party was a fundraiser for disability organizations.  At one point, the two young people were at a table, together, by themselves. The family noticed all this and reflected later on it.

“It was a reminder of why we’re doing this,” the family reflected the next time we met.  “We are just getting started building a new kind of network for our daughter.  One that is just for her, and us, outside of disability.”

I was so impressed with the strength of that family.  They showed the power of families to lead the way in inclusion, by taking the hard steps of walking with their commitment to host a project that was unique to their daughter’s life.

It was a helpful, and beautiful reminder of the level of intention it takes to try and create a new story, and build a new kind of future, for families like theirs.

This the 2nd of a six-part series.  Link to Part 1.  Links to subsequent parts will be updated as they are released.

Within two years of “saying yes” to doing a Family Project with Starfire, Carol had: 

• Launched a monthly “Sew & Play” event in her community’s park where she and local kids learned sewing from a neighbor.  They collaborated to make a community quilt!

• Joined the citywide association of neighborhood leaders who were working on ways to improve life for all people in her community.

• Organized a neighborhood Christmas caroling event, complete with hot chocolate and candy canes.

• Hosted a group of neighbors celebrating “Dio de Los Muertos.”

Click to watch video of Carol’s Family Project

And those were just the big splashy events!  Behind the scenes, she was having coffee with neighbors, meeting new people she’d never talked to, and, more importantly, reinventing her and her family’s role in her community.

I was blown away by it all.

We were reflecting one day with some other families who had done a project with Starfire, and Carol shared one of her biggest outcomes:

“We’re no longer the ‘family with the disabled child,’” she said.  “We’re the ‘family that does cool stuff.’  People want to know us.  They want to be around us.”

All of us in that conversation had to agree.  By taking some fun, interesting action in their neighborhoods, each family, including Carol’s, had transformed peoples’ perceptions of them as a family, and then, each individual member.

But more importantly, it changed how they saw themselves and each other.  That family became teammates, central in their neighborhood, connected to an expanding network of people who cared for and shared the same little corner of the world.

For years, they had been told a troubling story about what “disability” was and wasn’t.  Parents had been told that story even when they themselves were children, witnessing who was and wasn’t in their classrooms or on their sports teams or invited to hang out on Friday nights.  Then when their child with a disability was born, that narrative was reinforced by all the therapies and services….And by the growing lack of ordinary, everyday people in their child’s life.

They were in danger of having bought the story.

But with these projects, they were seeing a way out of that as their only story.

It’s not that we didn’t want to discuss disability as an aspect of someone’s identity, or even celebrate differences. 

But in our work at Starfire, we found that investing in the disability story was just….

…well…

…boring.

It was being done everywhere, all the time, by everyone else.  And there just wasn’t much energy being put into other potential aspects of peoples’ identities.  So we decided to put all our efforts on the side of helping people find their gifts, discover what new identities could emerge for them, and looking to meet up with other people who shared that in common.

I once heard John O’Brien describe identity as a disco ball.  We often think we are just a singular person with a single story, encompassed completely in who we consider ourselves to be.  But in reality, he explained, we have many different aspects of our identity.  We are different with our parents than we are with our siblings.  We are different with our neighbors than we are with our lovers.  We are different with our colleagues than we are with our best friends from high school.  Each new connection offers a chance to grow a new part of our identity.  So the surfaces of the “disco ball of our identity” reflect the people we meet and come to know.  They grow and fade, both in quantity and quality, with each additional connection.  We have so many unique stories within ourselves, just waiting to be discovered, lived and told.

We aspired to more identities, and not just more, but more beyond the assumptions and limitations “disability” imposed upon our perceptions of ourselves and others.

Making this commitment to look for strengths and gifts asked a lot of the families who worked on a Starfire project.  Oftentimes, they themselves were so invested in the mindsets and culture of the disability identity around their child, they couldn’t even imagine anything else. 

One mother, Achsah Fitzhugh, came to understand how dominant her son’s disability was in their life after she hosted a series of events in her community.  She began to see her new parts of her son’s identity emerging and expressed how powerful that was for them. 

“I can’t believe how long autism was in the driver’s seat of my son’s life,” she told a group of families.  “He’s got so much more to offer the world, and that’s the big story now.  Autism is still along for the ride, but we’ve put it in the trunk.”

It was a vivid and powerful image for us.

Sara Vank was another parent who started creating projects in her neighborhood with Starfire.  In reflecting back on how much her community project meant to her and her family, she talked about her mindset before making a commitment to discovering the gifts of her daughter. 

“Before this project, I felt like my daughter was a diagnosis.  Like I had given birth to a syndrome.  But now I know she has her own identity as she is, and she is so much more than that label.”

Sara then introduced a metaphor that continues to inspire us.

“My daughter’s gifts act as a sort of ‘humanity anchor,’” she said.  “They counteract the dehumanizing effect of the disability label.  They help people find ways to connect with her, personally, human to human. And we all need more of that.”

Click to watch Sara Vank’s story.

That showed us the power of the label of disability to crowd out any other possibilities. And the transformational power of these new identities the families discovered as they worked, like Carol did, to find “more” beyond disability.

They did have to give up the easy explanation, though.  People initially thought their projects were about helping people with disabilities find each other.  Many of the families had to respectfully decline offers to connect them with disability non-profits and support groups.

There’s a comfort to old mindsets.  The structure of the world has people with disabilities in familiar, albeit unhelpful, roles.  “They” are the people “we” help through our charity events and fundraisers. “They” are peers of each other, but not of “us.”

Breaking out of that takes courage.  It’s risky and unfamiliar territory.

That’s why the families had to make a commitment to do it.

When families lived up to their commitment to focus on gifts, they reported feeling like they gained  new identities, not only for their child, but for themselves and their entire family….And even for their community and neighborhood.  People were more connected, less isolated, and over time, developed their connections into relationships that were important to them. 

I have a friend with a disability who wrote a helpful piece touching on the “privilege of reciprocity.”   We, as nondisabled people, are expected to contribute our gifts: to others, to our family, to our community, to an employer.  But collectively, we as a society are pretty inexperienced at making space for people who we perceive as having no gifts to offer.

This has devastating consequences.  I once listened as a Doctor of Behavioral Psychology offered that helping people with intellectual disabilities find and develop relationships was a waste of time because “they can’t give back to the relationship.”  I offered dozens of ways people reciprocate in relationships that he had never considered, but it told me more about another deep and troubling mindset we must work to change. 

The problem isn’t with the gift, nor the giver.  The problem is that potential receivers have been told a single story about disability, and that story rarely includes the value of peoples’ gifts. 

So we’ve got to show them a new story. That’s the power of the family projects and the openings they create.  Uniquely tailored to each person and family and the people around them.

A gift cannot be given unless it is also received, so we have to help create opportunities for receptions. 

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

Hello and welcome to Starfire’s podcast. We're talking with Starfire, family leadership coordinator, Carol Combs, and two of our family mentors, Nancy Fuller, and Sara Vank. As family mentors, Carol and Nancy, and Sara guide families of loved ones with intellectual and developmental disabilities to nurture relationships based on common interests versus disabilities and beyond paid staff. As parents of children with disabilities and young adults with disabilities too. Carol Nancy and Sarah have firsthand experience breaking the cycle of social isolation, creating sustainable community supports and developing better stories for themselves and their children by creating and launching inclusive community projects. And they're here today to share with us the why, you know why they said yes to doing a family project with the family leadership network, why they hadn't done it before and why they think it's changed the way they build relationships. I would like to introduce Carol Combs who leads this effort for Starfire.

Carol Combs:

It’s great to be here and thanks for bringing us to together in this space to talk about the why of doing family projects and why the family leadership network exist. So the family leadership network is a family led effort that empowers families of loved ones with developmental disabilities to cast vision for what's positive and possible for themselves and their families. It's about discovering interest and identities beyond disability. And we support families in becoming named and known in their communities to create real connections that spark meaningful relationships as the family leadership network, there are some essential supports that we offer. So there's mentorship where you get one on one sessions with the Starfire family mentor, family mentors are parents and family members who have gone through the project process and have the lived experience of not just disability, but stepping into a space of more.

We offer free resources, including community design sessions that help us start thinking about ways that we can get connected. It's a great way to come together with others, to brainstorm and get some ideas of what we could do. Community story hours always highlight a person who has done a project and they're designed to support and cast a vision for highest hopes of what is positive and possible. And then our families at the center of a connected community training, help us understand what we're up against and what we can do about it. With the family projects. Each family is given a budget to launch a family project in their neighborhood or their community, whether that be defined by physical location or an interest. And we pay families for the hard work that they're doing to make this work come to life. The four commitments are a foundational component here at Starfire and within the family leadership network.

And what these do is they just provide guard rails for us. As we step bravely into the space of connecting with our community, they provide the opportunity for families to begin discovering ways that they can activate and share their gifts freely within their community. And they also provide room for a new things to grow and as space where we can discover and imagine, and co-create, they are creative and they're fun. And it's something that everybody can live by. Family projects are designed to support families to get connected. And these can be small or big. We've seen everything from front yard barbecues to outdoor movie nights, porch concerts, art days in the park community acts where we just simply care for our neighbors. We take them a card when they're sick. We welcome the newcomers to the neighborhood. The possibilities are endless, and the benefits of connecting with neighbors to become named and known are so great.

Robbie:

Thank you, Carol so much. So the family mentors with us today are Carol Combs. Who's um, wearing two hats today. It's not only the coordinator of the program, but also is a family mentor and Nancy Fuller and Sarah Vank. And with that said, I'm gonna stop the share on the PowerPoint presentation so that we can jump into some questions and really why we're here. So, Carol, I'm gonna start with you. Tell me why you said yes to doing a family project.

Carol:

Oh goodness. I love this question. And I think about it a lot. So we said yes to a family project five years ago. And the reason we said yes was the opportunity was right. My family and I were kind of lost and lonely and feeling at the mercy of the system. But I knew there was so much more for my son Grayson and his sister and our entire family. So the opportunity to just get creative and think about life differently was a breath of fresh air for us. It was a little scary because it was unknown. But for, for us, we really, we were lonely and we wanted to be a part of something greater. And we wanted people to step into the space with us and get to know us as a family, who we were, what our gifts were and the project space just gave us the opportunity and the support to do that. It was very life changing for us.

Robbie:

Thank you for sharing that. Nancy, you had a similar experience. Tell us, you know, why you decided to do a family project?

Nancy Fuller:

Well, my son's a little bit older than, uh, Carol's son Grayson. My son, Steve was in his early twenties and we only knew as a family about him attending day programming. And he wasn't thriving in that environment. He wasn't using things that were meaningful to him, skills and interests that were meaningful to him and kind of just lacking joy. He made that very obvious to us, not even with words, but with his actions. So his dad and I were looking for a new way. And when we came across Starfire and started looking at the principles and the projects that they were running, we just decided, you know, what do we have to lose the current method and the places he was going, wasn't really fulfilling him. So we were inspired to try something new. And that's why we said yes.

Robbie:

Sara, your daughter's younger than both Grayson and Steven, tell us what your experience was. Why did you say yes?

Sara:

I think I said yes, out of trust of a friend who had invited me to learn more about Starfire and the family projects. And she was just a little over a year old and I was coming from a place of starting that isolation, starting that loneliness because the most connected I was was with therapies and making appointments. It was just a whole lot. And then a friend asked me to go walk and he's like, Hey, this is kind of a family project. What do you like to do with your family? And you can do something fun and joyful and exciting that you guys like, which was so much better than like where's your insurance card. And like, where's that report and make this appointment. So that's, that's why I said yes, because it was just like a whole new invite than the invites I'd been getting from hospitals and first steps and all that stuff, which is the early intervention team. So that's why I said yes.

Robbie:

Well, I'm so glad you did. It sounds like all three of you had that same experience in terms of navigating through a system, pulling out an insurance card, filling out form after form. Did any of that play into your decision to say yes to doing a family project or, or maybe did any of that make you hesitant to say yes at first Carol, you wanna jump in on that one?

Carol:

Yeah. So Grayson's 14 now, but when we started this, he was eight and we were constantly, it was just a list of cans, wont’s and nevers. And I had never thought about his gifts before. I'm sad to say that, but we were so hyper focused on that list of cans, wont’s and nevers handed down a diagnosis that we were just ready for something new, because I knew that Grayson was more than, than his diagnosis. And for us, that was refreshing. And it was something that our entire family needed. His diagnosis became our sole identity as a family. And we knew there was more and we knew that we were more than his diagnosis. And so it was a breath of fresh air and it allowed us to step out of the, the service world and bravely into community. And it was something that at the time I felt that we needed and now I know without a doubt, it was what we needed.

Robbie:

Yeah. That's really good to hear. One of the things that Carol has shared in the past is that periodically and sadly you have to call for EMT support. And before you did your family project, before you said yes, when the EMT would come thankfully to your home, you felt that maybe you were doing all of the talking in that you felt a little bit like a burden. Tell us how you felt after doing those projects.

Carol:

So prior to doing family projects, when we would have to call for emergency services, it was solely eyes on me and there was no connection with Grayson. So he was just viewed very much in a burden type way, was the feeling I got from the EMTs when we stepped into the space of community that all changed. So we had the opportunity to, to meet first responders at the park, as we hosted events. And the next time we called, uh, and we needed support, the EMTs walked in and they were like, Grayson, this was not how we planned on seeing you. And they began talking to him and it was that moment that Grayson became fully human in the eyes of those around us. And it was just, it was very hopeful for me because he was no longer seen as a burden, but rather an important valued member of our community.

Robbie:

Yeah. That's awesome. Thank you. Thank you for sharing Nancy. Steven's a little bit older. Why hadn't you said yes. Prior to your work launching the, um, Anderson art collaborative.

Nancy:

Well, really, you know, we didn't know how we didn't know people were doing this. Yeah. It's kind of just not the culture of what people do as adults when they exit school. And so we didn't know how we didn't know where to start and Starfire, you know, as they, they teamed me up with a couple people to talk through it each month, they kind of guided me on the, how so, what I needed to know is it's possible to follow Steve's gifts and what the community needs and to create something that included him. So they told me what was possible. And then each month we would meet for coffee and the encouragement they gave me each month to say, you can do this Nancy. He loves art. And there's people in your community that love art too. And it's just a matter of getting some courage in going to coffee and meeting with some people. So I had the support, I needed to step outside my comfort zone, cuz you know, as a parent, it's really scary to approach people that don't have someone with a disability and ask 'em to join in on something. So I would just tell you that it was the team around me, of the Starfire folks that really gave me the insight that I could do something different and the encouragement to move forward.

Robbie:

Yeah. That's awesome. Sara. I know that when you started working with Starfire, your daughter was young, right? So a year you probably didn't have a lot of time to think about why not, but what gave you the, you know, the courage? What, what made you say: “Yeah, I need to do this”?

Sara:

I think it was those conversations with the mentors and the friends who were doing the work already. And they just gave me kind of like the, the light bulb went off and I was like, you know, I don't have to have the story written for my daughter already. I don't have to have her known in the neighborhood as the little girl on a, a gate trainer. And I'm the mom who's frantically in the beginning carrying a gate trainer and the oxygen trying to get in the car. I, I was just like, well, when asked like what we wanted to do and what we wanted our family to be known for, I had been living in Portland for 12 years and I had come back and where I live now is not like Portland, Oregon. It's very, you know, wonderful place, but a little bit less weird.

And I was like, well, let's make this place a little weird. And so like, it was it like that being asked, like, what would you want in your community? And I was like, let's more art and let's do something weird. And let's be like the, the, the nice, weird family. <laugh> not the creepy weird family, but the nice, weird family. And it completely overshadowed what people saw right off the bat, like making a story, created a new narrative for Lucy until she can take over her narrative. I wanted her to be known as a part of the family who lives art. She is now known as the girl who doesn't wear shoes. So that is a good thing too. <laugh> I take it. I will take it.

Robbie:

Amen. Absolutely. I really liked what you said about changing the narrative. Um, sometimes when a person is known for something, it blocks everything else out. They can't always be known for their gifts and to Starfire that's. One of the biggest benefits of our program is to give the world at large an opportunity to meet others and to share their gifts and to learn more and, and just to make the world more inclusive. Oftentimes people will say that working with Starfire helps change the way a parent or grandparent deals with others and connects with others. And I'd love your read on what your takeaway has been. Have you felt that you are more empowered or has it just changed the way you deal with, um, the day to day and with relationships?

Sara:

I would say yes, yes. To all of those things. Uh, not only was it empowering, but it helped me discover that as a family, we had the capacity to make some change around us and become more connected. The mentorship, the lessons helped me bolster some bravery and step outta my comfort zone as Nancy shared and say, let's meet for coffee. We're thinking about sewing at the park. And then as that evolved, we started thinking about like, we've met all of these amazing people through these simple interactions, they have gifts. And what happens when we combine our powers. And since then it's evolved and we recognize the importance of community and connections and contribution. And while we may not be doing the grand things like sewing at the park every week, we've gone deeper during this time where our world is saying we have to, we have to be a little bit more mindful and it's encouraged us to step into, um, community acts and recognizing that when we know our neighbors, we're safer and our family's safer.

And so now it's evolved to, we know all of our neighbors that we can see, uh, from our front porch and we connect with them on a daily basis. And we take the time, we know that miss Sharon next door, um, has two bees and sometimes they can be mischievous. And so we're constantly looking out for Rafferty to run down the alley so we can, we can help and, um, chill next door, right? Like there's just these acts of kindness that have occurred because we've recognized that we need to know people and people need to know us. One of the biggest realizations that I learned through the project process was that I was denying people, the opportunity to get to know Grayson simply because of the fear of rejection and lack of understanding. And by stepping into the space and making, uh, the commitment to the four commitments, it encouraged us to extend invitations and it allowed us to invite people in who were waiting for that invitation. I was just too scared to, to extend it. So that's been, that's been a really powerful lesson for us as a family.

Robbie:

Nancy, what about you? Were you afraid and what did you find was the biggest benefit of hosting the event? Did it change the way that you interacted with people? Did it grow your world?

Nancy:

It did. And it does. And it will. And, and I say that because it was that first small little project that built resilience in me and it built confidence in me to think about trying something again. And so we've been at this for a few years now from our first small little project. And the first one, I built just enough resilience to try something else during co you know, a sidewalk chalk in the neighborhood and inviting others to do their driveways and coming around and taking pictures of everybody in COVID when nobody wanted to go inside. And then that worked out well, met a few more families. And it was like, oh, what next? And that led to a third project that we just did on our own, which ultimately led to a fourth project. And then as I talked with other family mentors, I realized this is no longer even about one project.

What I call what we live now, it's a Starfire lifestyle, and it's a lifestyle of, we choose now to put ourselves out there. And if people reject us, that's their loss, that's their loss. That's not our loss. And if they don't reject us, it's an opportunity to build friendships. And you know what, it's not just about my son, Steve building a friendship for him. I'm building friendships for me, selfishly. So there's neighbors and people in the community that I never knew, never knew that I would find them. And without taking these little small steps and risks, I would never have found them. And so this whole, lifestyle's been a blessing, big blessing to our family and it will continue.

Robbie:

Yeah. That's awesome. Sara, you wanna wrap us up with maybe talking a little bit about how this experience has helped empower you in relationships with the community?

Sara:

Absolutely. I mean, to follow with Nancy and Carol is a, a tough gig, but like, yes, I would say the Starfire lifestyle is one we strive for. And also she's still young. She's four now. And I feel like it's the joy driven life. Like knowing our neighbors brings more joy, even small, small little acts of joy, like on the corner, there's a single dude. He owns a bar like lives hard, plays hard, but we give him a Christmas gift or holiday gift every Christmas. And he goes and gets my kids like a little like ice cream card. I mean, I am shocked, but every year he does it and it it's just like, and now I know this guy is gonna keep an eye on my kids. And that's just like a little example of like, we have a friendship and it's small and it's little, but it's meaningful.

And like Nancy said, we're gonna do a pumpkin patch in the fall and just buy little mini pumpkins, throw 'em in the yard and have a sign and say, you know, take one, give one, enjoy it. We want people to have like these little, little orange pieces of joy because my daughter loves pumpkins. And that's her thing, her birthday's in the fall. So it's really affected. I, I will say though, as a parent, just personally, my growth and that bravery Nancy was talking about, and that resilience has helped me provide more opportunities for her to try new things. Cuz the fear that's kind of wrapped up in disability and oh, if she fails or if she falls or if people don't understand why she's not responding right away, blah, blah, blah. Like now I'm just like, you know what it's gonna be all right, we're gonna try this hip hop class. It may be a hot mess, but it'll be fun. I mean, who doesn't like dancing. So like that, I will say being a part of the Starfire experience, the family mentoring experience and doing a family project has helped me get to that point to let her try more instead of my fear saying she can't.

Robbie:

Thank you. Thank you so much. It truly is about healing and community and a whole lot of teaching, right? It's about sharing your story and your lives and being brave enough to do so. So thank you for all of the work that the three of you do on behalf of Starfire and on behalf of our community, we're better. And your involvement in participation in bravery is helping us build a more inclusive community alongside folks with than without disabilities. Um, so thanks very much Carol, as the program coordinator, do you have anything to add before we close?

Carol:

I would just like to say that it just takes, uh, as Nancy says, eight seconds of outrageous courage, uh, to reach out and extend an invitation or say hello and the Starfire team is always here for everyone. Who's thinking about ways to get connected and ways to heal the culture. So we're here for y'all.

This is a six-part series.  Links to subsequent parts will be updated as they are released.

When I stepped away in 2017 as Starfire’s Executive Director, I stepped into a request from the Board to focus on “Scale.”  It’s such a tricky thing for our field, as most of our “scale” shows up as segregated and congregated programs.  Our big building full of 100+ people with developmental disabilities was great at answering scale.  All we needed was more buildings and vans and we could double or triple that!

But I was bothered by the troubling impact that this kind of “grouping” had on the lives of each individual person with a disability, so that was no way forward.  Fortunately, I worked for an organization that had left that model, and the mindsets that created it, in the past.

As I puzzled over it, I had some solid inspiration. 

Starfire’s community building projects were a creative, collaborative and dignified step forward.  Each person that completed one, with the support of our staff and people from their neighborhood, gained, on average, four new people in their life.  Even better, they were fun and raised everyone’s imagination about what a person with a disability could do in their community.

But as beautiful as the projects were, they still had one aspect about them that was bothering me.  They relied on paid staff to make them happen.

Many of the paid staff did amazing work, as you can see on our YouTube page. But they still left.  And when they left, they took all the values, intention, learning and experience with them.

I was also inspired by some conversations I had with Jesús Gerena, who was running an innovative program in Oakland, California called “Family Independence Initiative” (now called UpTogether).  They were paying families in their programs so set their own goals and manage their own lives.  And they were using the money they had previously paid a social worker to oversee families.  It was brilliant and equitable.  It felt like it belonged more to the future than the past, and that’s what I was looking for.

I just needed a few families who might be willing to try it out with me. 

One day, I was invited to meet with a group that included a few parents of children with disabilities.  The group was spending a year together, learning about the service system their child would one day come to depend on.

I explained the “Who’s In Your Life?” pattern.  I also showed some hopeful examples we had discovered of ways to work outside the pattern.  People had a few questions, and I answered them, and called it a day.

A few days later, I got an email from Carol Combs, who I had never met but had been in that session.  She told me that she was the mother of a child with a disability, and said ““I will not lie....the concept you presented blew my mind and has left me with a million questions and the desire to learn more.”

By that time, I’d learned that the best way to support people’s learning was to give them a few options to choose from.  We all need to own our own learning, if we are going to embrace it, after all.

We happened to be hosting John O’Brien in the coming weeks, and I thought that might be a good place to start, so I sent the invitation to Carol.  I admit, I am usually pessimistic that people will show up.

But Carol, to her everlasting credit, did show up.

Afterward, she told me she had even more questions, and wanted to grab coffee.

A week or so later, we huddled around a Café in my hometown and had a terrific conversation.  As we left, I told Carol about an idea I had to give families a budget to run their own projects, and she said she was in, if it happened.

In the next few weeks, Starfire committed the total budget equivalent of one staff’s salary to divvy out amongst 10 families of children with disabilities.  I was excited about the possibilities. 

I knew where I could turn first.  Carol Combs.

Over four years, we would launch dozens of “Family Projects” all over the city, and a few scattered around the country.  Some of them even successfully launched in the midst of the pandemic!  They were powerful examples of the power of collaboration between families, neighbors, and a creative organization like Starfire.

But in order to get there, I had to figure out one major problem:

How would I prevent families from reverting back to culturally dominant ideas around their child with a disability?

It’s not like I had the power to prevent them from doing that, but this opportunity to innovate felt too sacred to allow it to replicate the patterns that led families into the loneliness and segregated options of the past.

We knew that there was …

more to life

than what the service system was offering.

The money I was entrusted with represented Starfire’s creative hopes, which were funded by the big hearts and future dreams of its donors.  I had to be a good steward of these funds, or this opportunity would slip away, and we’d all be left jaded.

I figured that in order to be successful, I’d need to give the families that said “yes” the very same resources and support I had given our staff for all of those years.  That meant I had to pay them for their work, give them a budget to work with, plan regular time to learn Starfire’s values (and unlearn the unhelpful habits our society had fallen into around “disability”), and give them some kind of structure or parameters for their efforts.

The money was easy to figure out, but took some courage to implement.  We gave each family a couple hundred dollars to say “yes” to starting a project, and promised another couple hundred once they completed it.  It was strange to think of giving families money, but my learning from the success of Jesús Gerena’s Family Independence Initiative, which was being expanded to Cincinnati and embraced by our funding community gave us courage. 

I remember us asking various versions of wild questions: “What will they spend it on?  What if they spend it gambling or on beer?”  Then we realized we paid our staff tens of thousands of dollars each year and it was possible that they were, in fact, spending it on gambling and alcohol! 

Giving them a budget was a little trickier.  We wanted to give each family at least $1,000 in a project budget.  But we needed receipts for their project expenses or that would be counted as income and they’d lose a chunk to paying taxes on it.  So we made sure that families could easily get reimbursed up to the limits of their budgets.

I then decided to set up a set time each month to meet with each family.  I made it at their convenience.  Sometimes we met in the early morning or at the end of a workday.  It depended on each family’s schedule.  At each meeting, I’d bring them some article or bit of reading that related to Starfire’s values, and we’d talk about how their project was going.

Carol was the first family I started meeting with, so she helped me develop these patterns early on.  She’d tell me which articles were helpful, and which ones weren’t.  I’d send her links to videos and invitations to events and we’d chat afterward about whether they were worth her time.  Over the first few months, we’d developed a sort of curriculum for a family wanting to learn how to do a Starfire Project.

All of that was exciting, but the toughest part of every conversation I had with families was helping them let go of old mindsets and make space for new ones. 

They kept wanting to go back to old ideas:  “What if we launched a special needs art party? Can I use my funds to hire Starfire to do our project? Can we create a Disability Parents Support Group?”

And they desperately wanted to get together with the other families.  “Can we attend and support their party?  Can I send it out to my Disability Moms Group?”

I knew that wasn’t the way forward.  I had already helped our staff navigate that, though I had never put it down in writing.

What families needed was structure. 

I could understand that.  We all need some kind of structure.  But my experience in re-imagining Starfire’s programs had taught me a lot about structure. 

Sure it was solid to have a building where all the people with disabilities went.  And we had calendars and schedules that detailed out who was going where and with whom.  We had certain days people came and other days they didn’t.  We had staff who were assigned to certain roles and responsibilities. All of that was a form of structure that had our old programs running like a well-oiled machine.  Everyone knew where they fit in and how and what to expect.

But what I came to understand about that kind of structure was that even though it provided certainty, it provided the kind of certainty that a prison provides.  It limited what was possible for people.

As I learned new values (the Five Valued Experiences, Asset Based Community Development, Social Role Valorization and Person-Centered Planning, to name a few), I felt more and more like our old structure was unnecessary.  Those values provided a new kind of solidity and structure.  In fact, they came to feel more stable to me the more I practiced them. 

I had a hard time explaining this experience, and one day, got some help from Mary Pierce Brosmer, founder of one of Cincinnati’s best organizations, Women Writing for (a) Change.

Mary described her concept of “the Conscious Container.”  She started by describing how most structure was like our old programs, top down and rigid, inflicted upon people at the bottom.  She held her hand, fingers down and spread out, in a way that created a set of prison bars.  That felt familiar to me.

But, she explained as she shifted her hand palm up, fingers together creating a shape like an empty cup, a bowl is just as solid as prison bars.  It holds anything in any shape without restricting or limiting the thing.  It can grow or move out of the bowl in whatever way or shape it wanted.

This was how “values” can shape a structure, she explained. 

That was so helpful to me.  It was the perfect metaphor and rhymed with my own experience, and I started investing in values:  We ramped up our trainings, we infused them into our metrics and meetings.  Those values carried us through Starfire’s entire organizational shift.  And they still remain strong and relevant over a decade later.

As I thought about structure for the Family Projects, I wanted to create shortcuts to the values that inspired Starfire, so they could get started quickly.  I knew I didn’t have the time with them like I did with the staff on our payroll.

So before one of my first meetings with Carol, I quickly wrote down “Four Rules” that I thought might help give structure to her Family Project:

·       You can’t do anything that focuses on disability.

·       You can’t make it a “special needs event” that brings people with disabilities together.

·       You can’t use it to purchase disability services.

·       You can’t make it a special needs support group.

I proudly read them to Carol, and she looked at me awkwardly.

“I get it, Tim,” she said.  “But I thought this was supposed to be about liberating families like ours from having to be told what to do by a social worker like you.  I don’t need more rules, especially not from Starfire.  It all feels so negative.”

I was stunned.  And impressed.  And a little embarrassed.  Here I was being called out, rightly so, for trying to inflict the “conscious container” in a top-down fashion!  Mary would have been proud of Carol, and would have likely shook her head and laughed with me.

Carol and I sat there, poring over my list.  We started playing around with it. 

“What are the opposites of these rules?” she asked out loud. 

We made a new list:

·       You can’t do anything that focuses on disability.  Focus on gifts.

·       You can’t make it a “special needs event” that brings people with disabilities together. Build something that is uniquely yours.

·       You can’t use it to purchase disability services. Find the free connections that community offers.

·       You can’t make it a special needs support group. Look for joy.

We stared at it.  It felt like it was a pretty good list.  And it felt so much better inverted toward these positive aspirations.

“It needs a new title,” Carol said, crossing out my “Four Rules” headline.

“What about “commitment?” I asked her.  A commitment is almost the same as a rule.  It eliminates certain possibilities.  Like marriage vows, or a new diet, or taking on new responsibilities.  But it originates from yourself, of your own volition.  It’s not required or forced upon you.  You choose it.

“Could we ask families to make these ‘Four Commitments?’” I asked Carol.

“I’ll make these Four Commitments right now,” Carol said laughing.

After we agreed that we were close to the right words, we started thinking about how to communicate these to families. 

We wouldn’t ask them to make these Four Commitments for the rest of their life.  These were just temporary commitments they would make for their year-long project. 

We just wanted them to try it out and see what happened.  Maybe it would be fun one-off experience for them.  At worst, they walked away with some money for their trouble.

And we would make sure that we told families we didn’t care what they did with the rest of their time.  If they wanted to spend the rest of their time in special needs support groups, surrounded by disability services, and hanging out with other families who had members with disabilities, that was fine.  It wasn’t fair of us to ask anyone to give any of those familiar, comfortable things up, and those aspects of our life weren’t any of our business, literally and figuratively.

It seemed fair to ask them to make these commitments because they were using Starfire’s money. 

And we knew there was the potential they’d discover what we had discovered:  there was more to life than what the service system was offering.

“I hope, wherever you come from, there is someone who holds your story. Someone who remembers you when you were knee high to a grasshopper.” –David Pitonyak

Being known is critical to our well-being, says author and one of the best diversity thinkers, David Pitonyak.

Tim Vogt, Starfire Learning Network Coordinator, recently shared his thoughts on Pitonyak’s piece, “Who Holds Your Story” on Facebook, and it’s here for posterity!

Tim Vogt, Starfire Learning Network Coordinator

“Over the past four years, I’ve met with dozens of families of people with disabilities.  I have given each of those families this article. 

Usually, it’s the first thing I give them.

It’s just so important.  It’s funny, it’s poignant, and it asks powerful questions with important ideas.  The icing on the cake is an attached bit of thinking from Jack Pealer and Sandy Landis, which I think inspired the article.

I’ve been able to learn from David Pitonyak a few times, and am grateful for it.  In particular, he first blew my mind with his “7 Questions” and framing “behaviors” as ways for communicating unmet needs. Such an important point of empathy that I was never taught.

Overall, this article is about helping people explore, name and reclaim their story.  Knowing a bit about the author, and Jack Pealer and Sandy Landis, I’m guessing its original intent was to help people with disabilities who were institutionalized and had their story lost.

For me, it’s also a cautionary tale of what might happen if we allow institutional stories to creep in, and/or we neglect building strong personal stories of connection and community participation.  That’s why I think parents of young children with disabilities might find this a critical read.  They are the single most important predictor, in my opinion, of a person’s trajectory into an inclusive life story, or a segregated life story.

Of course, it’s also critical that people in the field read it….And then think about ways they can catalyze better stories and avoid the institutional stories…

And lastly, I always wish neighbors and friends of people with disabilities could read things like this.  They might see themselves in the role of “Maria,” building lifelong memories and friendships…Or in the role of the sisters or the town policeman:  helping craft connected stories with people with disabilities and their families is such an important action any of us can take in our daily lives.

So, take a moment to read the “Who Holds Your Story” PDF below, and check out the author’s pages. All, I promise, are worth some clicks.”

Resources

• Who Holds Your Story: http://dimagine.com/wp-content/uploads/2018/03/WhoHoldsYourStory.pdf

• www.dimagine.com

• http://dimagine.com/seven-questions/

Discovery is one of the best things about this job. When Starfire received Ohio Family Network funding from the Ohio Department of Developmental Disabilities two years ago, the Starfire Family Network was able to formalize its service to families in Southwest Ohio, throughout the state, country and around the world.

Photo credit: Instagram.com/efearn.mobile

Charity and her family live in Ohio and participate in the Starfire Family Network. She and her family are completing a family project – in fact, a couple of projects. And that’s the beauty of the Family Network. Families with developmental disabilities work with a Starfire mentor to create a project that helps establish an identity exclusive of the disability while creating something that benefits the community and builds connections.

Raised beds. Instagram.com/efearn.mobile

Charity and her family began by doing simple bike repairs to help neighborhood kids riding. And they didn’t stop there. Because they live in a ‘food dessert’, their shopping choices are limited.

“We’re pretty handy, so we built some raised beds,” says Charity. “Now we can grow our own produce. And we can share it, too.”

But Charity says her family was inspired to do even more. “We installed a ‘Little Library’ box,” offers Charity, “it was small – with one shelf. But, during the pandemic, we started seeing that it was hard to find things like toilet paper and masks. So, we thought, ‘why not turn our library into a ‘blessing box’ to share books, school supplies and yes, even toilet paper.”

Photo credit: Instagram.com/efearn.mobile

Bottom line: they needed a bigger box. Charity adds, “When we had to get a new roof, I talked the installers into helping install a new, larger ‘Blessing Box’ for our front yard. The roofers got a sign out of the deal, and were able to share more things with our neighbors, including bike supplies.”

Photo credit: Instagram.com/efearn.mobile

Everyone has a role with the projects, including Charity’s 15-year-old daughter, Erin.

“Erin has many gifts,” says Charity. “She is an artist, photographer, and storyteller, and she uses her gifts to document what’s happening in the neighborhood on her Instagram page.

Charity says that working with Starfire has given her a greater sense of community – and confidence. “Starfire has given Erin the confidence to develop her identity,” states Charity, “and Erin is growing her voice as an activist, too.”

Photographer, social activist and Starfire partner Erin @ work!

When a bill that would limit disability rights in Ohio was presented, Erin was asked to testify at an Ohio Senate sub-committee hearing. “She wrote her own comments and delivered her testimony with confidence, and the experience gave her the opportunity remind everyone that people with disabilities have rights. And that we’re not stupid.”

Follow Erin at https://www.instagram.com/efearn.mobile/ and learn more about the Starfire Family Network at https://www.starfirecincy.org/families

When we talk about the work of Starfire, we use the phrase “building community.” A lot. Half of Starfire’s staff have the actual job title of Community Builder.

Here’s a quick primer on what it is, along with a story about one of our partners, Missy Schwartz.

In its simplest form, building community is a field of practices toward bringing people with shared interests together. Robert Putnam, author of Bowling Alone, says this action represents social capital which creates a sense of belonging, while Peter Block, who wrote Community:  The Structure of Belonging, shares that community building is restorative and brings possibility, generosity, and gifts.

Not a bad idea in today’s world.

As Community Builders, we work with our partners with intellectual and developmental disabilities to discover gifts and interests. This helps partners establish identities, exclusive of their disability, that can lead to connecting with ordinary citizens who share their gifts and interests. As community connections are built, partners are well positioned for “being known” and “being named” in their community — and to creating valued roles, as Missy Schwartz has done.

Missy Schwartz, Starfire partner & Interfaith Hospitality Network of Greater Cincinnati volunteer

Missy is on the prayer team and serves as an usher at Shekinah Glory Missionary Church in Elmwood, which recently joined in with another assembly in Cumminsville. Missy has an encyclopedic knowledge of dogs. Loves ‘em. She also happens to have a developmental disability.

Missy’s building doesn’t allow pets. But the Interfaith Hospitality Network of Greater Cincinnati (IHNGC) does! In fact, it’s the only facility in Cincinnati that houses pets for people who are experiencing homelessness. And they needed Missy.

Missy Schwartz

Known & Named

Valued roles: Starfire partner, Shekinah Glory Missionary Church prayer team member & usher, pet lover, pet shelter volunteer at Interfaith Hospitality Network of Greater Cincinnati.

Starfire Sr. Community Builder Danyetta Najoli introduced Missy to IHNGC in Walnut Hills in 2021. Today, Missy is a Pet Shelter Volunteer. She walks and feeds the dogs and does laundry as needed. The socialization she provides to the animals (especially the cats) is key to keeping the animals happy and healthy. The pet shelter manager, Garrett Parsons, was glad to have Missy join the team, and Missy also enjoys talking with Meghan Snyder who works at the shelter.

“I like walking Baby,” says Missy, “Or as I call her Min-Pin.”

Missy is making a difference at IHNGC. She’s seen in a valued role at the pet shelter because her efforts really do help care for the animals that otherwise might be surrendered to an animal shelter or left behind.

Missy’s been able to grow her confidence, community, and connections via the shelter. She’s a great ambassador for community-building, and when she was getting her hair cut, she enjoyed talking about volunteer opportunities at the shelter with Tonya Sanderson, a licensed cosmetologist. Tonya is also the pastor at Shekinah Glory Missionary Church, and she invited Missy to church, where she’s creating more connections. Missy’s faith is so important to her that she got baptized at the church and has been a vital part of that community ever since!

What do you need to “build community”?

For starters, you need people. People who are willing to share their time and interests authentically. And in a meaningful (not arduous) way. People like Tonya Sanderson, or Thane Lorbach, who opens his woodworking shop (and heart) to Aaron. Or Alicia Hildebrand or Rico Rodriguez, citizen artists who work with Kachelle to create beauty in Lower Price Hill.

Activating citizen involvement can be as easy as gathering a group of people or neighbors with similar interests. Witnessing the experience can help sustain and grow real, authentic, and meaningful relationships. The kind that build a more inclusive world. One person at a time.  

Want to learn more? Check out starfirecincy.org/starfirestories or call me, Robbie Jennings Michels, at 513.281.2100.

A recent WSJ story, “How Caregivers Can Take Care Of Themselves” caught my eye over the holiday break. The piece, by Clare Ansberry, was so thorough and well-written, and the timing was impeccable as one by one, family and friends were calling to cancel plans because of COVID, Omicron or “omicroflu” as my sister joked. Cue the continued isolation.

As the whole world grapples with round 2 of coronavirus, the article offers some great suggestions for caregivers looking to shore up their physical, mental, and financial health this year.  And it’s a great time to get involved safely with sessions Starfire will host this month - the Community Story Hour and the Community Design Session - that can help caregivers, families and individuals with developmental disabilities build community in 2022!

Let’s start with self-care. Dr. Grubbissich, quoted in Ansberry’s piece, says it best: “Caregiving is a very noble thing.  But you need to be well to care for someone else.”

Maintaining a healthy lifestyle and positive outlook are two keys to “being well.” When our time or roles are seen as valued, we feel pride and confidence, which is why Starfire compensates individuals and families for the time they spend creating projects that add to their neighborhood’s culture, establish identities, and build communities. And these Starfire Commitments of Community Building serve to guide our community-building work:

4 Commitments of Community Building

1. Discover your community’s gifts

2. Create something that belongs to you and your neighborhood

3. Grow connections

4. Look for joy

Being well is not a one-time Uber XL. It’s a daily journey. Make yours joyful with a few of these self-care tips for 2022:

Physical Health

• If you’ve been putting off a routine check-up or a checking of aches and pains, schedule a physical (it may take awhile, so get it scheduled now.)

• Take breaks. Even a 10-minute time-out can help you reset. And rest.

Financial Health

• Use the new year as an opportunity to review or create a budget. Start by looking at last year’s expenses to estimate what you’ll need in ‘22

• Many states offer tax-free stipends for caregivers who are relatives. Often overlooked, these funds can help extend your budget.

Emotional Health

• Update or create a phone tree of family and friends for easy access and sharing.

• Identify activities that you like - be it a walk or a movie or a chat with a neighbor - that you can do to help release pent-up emotions in a healthy way

• Build community - we published several ideas from our mentor, John O’Brien, from “Actions That Build Community” piece in December, like greeting a neighbor, donating blood or picking up litter in your neighborhood - plus 72 more great ideas that are evergreen!

You are also welcome to attend Starfire’s Community Design Session and Community Story Hour. We host these sessions monthly and they’re a great way to re-energize and connect.

Starfire Community Design Session - Thurs., Jan 13, 3-4 PM

https://us02web.zoom.us/j/87144355103

Families, people with disabilities and citizens coming together to help design and grow good lives — and good communities! Starfire Community Design sessions nurture family leaders via asset-based, community and relationship-building approaches of the Ohio Family Network. Each session features conversation on creative ways to build inclusion, access resources, and overcome obstacles via moderated sessions with two parts:

-Collective Learning - small group design breakout sessions for attendees to discuss community projects and/or their journey; the design group addresses challenges / obstacles, and ideas for breakthroughs, etc.

-Commitment/Affirmation/Action - participants share their takeaways from the session and next steps.

Community Story Hour - Mon., Jan 24 Noon-1 PM

https://us02web.zoom.us/j/85758644614

Give us an hour, and you'll get inspiring stories of families and citizens around our world who are thinking of creative ways to meet neighbors, build community, and end isolation for people with disabilities. January's storyteller is Lori Jennings who will share how she & her family became "named & known" in their neighborhood by hosting a pumpkin party that flowered and grew roots, both literally & figuratively!

This show is all about building connections and building community, but what's at stake if we don't? On this episode, you'll hear from Denny and his story about Don, an irascible old coot as he likes to affectionately call him, and how he helped Don get back to his community roots after being institutionalized for 30 years. This is such an important story to remember how far we have come. But also what's at stake if we don't do this work. Thanks for listening.

Denny: [00:00:41] Checking one, two, three. 

Katie: [00:00:42] Great. So we can get started.

Denny: [00:00:44] Well, hi, my name is Denny Berger. I'm retired. I serve on the Board of Good Life Networks and  also I'm a volunteer for ProKids as a CASA.

And so what else am I supposed to talk about? 

Katie: [00:00:56] So what is something about community building or being part of the community that you're interested in or passionate about?

Denny: [00:01:04] I guess my orientation comes a lot from when I was working. I worked with people with intellectual and other kinds of developmental disabilities in a county-based service system.

 I met a lot of people over the years who lived in institutions or at home with their families or were moving out of institutions and into the community, or were just finding their own place for the first time. And in all those cases, it's great to know your neighbors. It's great to have some connection with the people around you.

So I would say community building to me is knowing your neighbors, having a relationship with them, looking out for each other, especially people who tend to be devalued or labeled with some kind of disability, it's really important in that sense. 

Katie: [00:02:00] Because they're typically not included? Or, or why would you say it's...? 

Denny: [00:02:05] Well, they're typically not included or they're at risk of being  isolated being lonely and  being dependent on paid staff for anything they do. And that's not always the best circumstances to be in. 

Katie: [00:02:22] Yeah. I think there's a pretty powerful story that you have around this. So let's jump into how you came to know your friend Don. 

Denny: [00:02:32] Don. So this was probably in the late nineties.  I met this guy who lived in, a state-operated facility. And was the kind of situation where people live 16 to a so-called cottage, but really cottage is a euphemism and there were about eight or nine so-called cottages, so you can do the math. It was a big institution essentially. So this guy that I met through some mutual friends, had a compelling, well, this came out over time, but essentially what he told me was needed to get out of here. He needed to get out of where he lived because he belonged on Gracely Drive. And Gracely Drive was a street in Sayler Park where he grew up.

Right on the river, a river community, nice little town, really. You know, walkable streets. And it's the kind of thing you do know your neighbors and everybody knows everybody and people have lived there for generations.

So it is, it's a nice little community.  And Don lived there with his parents until he was about 30. As kid, I'm sure he was a real active, he loved to fish. He rode his bike around. I don't what kind of friendships he had in the neighborhood as a kid. I don't know, but I saw a lot of pictures of him with his pants rolled up wading in the river, and he always talked about riding the Anderson Ferry. He lived close to that. That's sort of a Cincinnati landmark that goes over the river back and forth quite a few times a day. But when I met Don, he was probably 60, 59, 60 years old.

Katie: [00:04:25] Right, right. So there was a time where he lived in his home in Sayler Park, on Gracely Drive. And then there was a time when he lived in this institution, then it ended up being about half of his life was spent in a community and the other half in an institution. Tell me about that time period that Don lived and what that looked like, for him to move to an institution. Why was that a choice that his parents ended up making? 

Denny: [00:04:49] It was probably, I forget exactly when he was born sometime in the thirties, maybe mid to late thirties.  I think he probably was at times challenging, you know?  But as his parents aged, I think, the family doctor recommended that Don would be better off. He was kind of a handful and his parents, I think his dad had died by this time and maybe it was just his mom. I can't remember. But the doctor essentially recommended that Don be placed at Orient, which was a large state-run institution, essentially. And that would be better for him. 

Katie: [00:05:31] How old was he at that point? 

Denny: [00:05:32] He was like 30.  Yeah. And so he moved to this state institution and his mom followed the doctor's advice. I think she was a little sad about it, but ...

Katie: [00:05:45] It sounded like for many years she was able to bat off the doctor's advice and say, "No, this is my son. He's staying with us."  But then after 30 years, and when she started aging, that was the choice that she was presented with and felt that was the only choice she had left. Is that right? 

Denny: [00:06:05] The other factor was "What's going to happen to him when I'm gone?"  You know, and I think in her mind, she felt like he would be safer in the institution because she probably didn't want to ask the sister to be responsible for Don. She had her own life, her own children, et cetera. And so I think it was with the best of intentions that she was able to feel more secure that Don will be in a safe place and, "I don't have to worry about him."

Katie: [00:06:36] And there was a story about institutions before the real story came out, which was that it is a safe place and this is where people can be in community with people, quote, unquote, like them. 

Denny: [00:06:46] Yeah, that's the myth. 

Katie: [00:06:48] Yeah. That was the story being kind of marketed at that time before a lot of the injustices and absurdities came out into the open and you had the Willowbrook Documentary and  Robert Kennedy coming out and revealing a lot of the atrocities.

So this was prior to that and Don was living in the institution then for about 30 years?

Denny: [00:07:10] He lived in Orient until, then Orient got closed as part of the state institutionalization push.  

Katie: [00:07:18] Deinstitutionalization push.

Denny: [00:07:21] Sorry. Yes. And, when that closed, I remember just busloads of people, in Butler County, there was a place called Fairfield Center, which was funded. Basically,  it was an institution too, but it was more privately operated. It wasn't operated by the state of Ohio. It was funded by the state of Ohio. And, so he moved in there and that was, you know, I don't know, 120 people, something like that, living there. So it was just a smaller version of where he had been, with newer buildings. Less gothic.

Katie: [00:07:53] It sounds like there's a pattern here in our society that we...

Denny: [00:07:57] The mindset used to be that these people need special protection and they need to be congregated and segregated because there was  all these myths about they were a burden. They were pitiable. There was the narrative of sexual deviation and bad behavior, all that. So that was in part the  dysfunctional reasons why people were lumped together. 

Katie: [00:08:26] Sure. 

Denny: [00:08:27] So yeah, Don that's where he was living when I met him.

Katie: [00:08:30] Okay. And it sounds like, kind of in that time period, a lot of his past and Sayler Park stayed with him. 

Denny: [00:08:36] It never went away. It never went away. He always said, apparently, I've talked to other people that knew him longer than I had, and he would always say, "I belong on Gracely Drive. I don't belong here. I want to live in a group home someplace other than here."  So he always wanted to return. He never forgot his home. And I think he did romanticize and idealize going home. You know, he thought in his mind his life would take up where it left off before he was moved into Orient. 

But 30  years went by and you can't go back, you know? 

Katie: [00:09:13] A lot happens in three decades, to a town and to people. 

Denny: [00:09:18] People died. His mom died, you know, his sister was still alive and she didn't live in Sayler Park, but she was still in the community, in the Greater Cincinnati area. 

Katie: [00:09:26] And it shows  he was just completely out of touch. You know, hadn't gone back, hadn't visited maybe nobody from his family visited?

Denny: [00:09:35] No. Yeah. Not as far as I know. 

Katie: [00:09:37] So just completely cut off and that is heartbreaking to think that somebody would have...

Denny: [00:09:44] And he remembered all, you know, like people from the neighborhood. He told me stories about, his next door neighbor, Bill and his wife,  and you know how they would do things together or he would go over there and just hang out with them sometimes and they would welcome him into their home.  And he remembered that feeling of being somewhere where people know you. They know who you are. They care about you. And he lost that when he moved into the institution. It was very anonymous, you know? 

Katie: [00:10:17] Well, and I think the story of resilience there is that those experiences actually were, in some ways, probably a buoy for him throughout that entire time period, where he could remember and think back on a time when things were different and that in some ways that was a mantra that kept him alive or resilient or surviving.

Denny: [00:10:37] I think that's right. He did it, it kind of, he was a survivor  and part of his gift was he motivated people to try to help him. And I mean, we were able to put ourselves in, or speaking for myself, I put myself in very uncomfortable situations at that time on Don's behalf. 

Katie: [00:10:56] Well, tell me how you ended up finding a way to support him to getting back home. How did that process begin? 

Denny: [00:11:02] Well, there was like a little group of people, and we were all sorta like service-y service workers, to be honest, but I spent a lot of time going back to Sayler Park, with and without Don, you know, like meeting, actually, I met his nephew who lived in the house where he grew up and he really didn't really want his crazy uncle back there. That's kind of exactly what he said. 

Katie: [00:11:25] Wow. Well, and let's just pause for a second there, because it just tells so much about the story that had been told about Don. "Yeah, he's gone. He's put away, but he was crazy."

Denny: [00:11:38] "He was crazy. He's better off where he is."

Katie: [00:11:41] Yeah. So, you know, having not even probably known him, you said he was his nephew? I mean, he was probably really young when he left. So just it's the story that gets told to kind of almost make things okay. 

Denny: [00:11:52] Exactly. That was the narrative. Don was a crazy guy and, he was better off where he was, He was with his own type of people, et cetera, all that. But in terms of what else, I think I just got to know Don really well. We spent a lot of time together, and he cracked me up. He came to my house for holidays. He came for Thanksgiving. He came over at Christmas time, he didn't go anywhere.  

Katie: [00:12:16] At that time, was that a typical thing for a case manager to bring somebody home that they worked for, on holidays? 

Denny: [00:12:24] Some people did. I wouldn't say it was unheard of, but you know, it was not typical. 

Katie: [00:12:29] Right. So clearly Don and you had kind of hit it off and you weren't bringing everybody that you supported?

Denny: [00:12:36] Yeah, my kids got to know him, you know, he'd call up and yell into the phone. And, you know, my kids couldn't understand him. And they'd go, "Dad, it's Don"-  some loud guy on the phone going " Dennis, the old man"...  he was like, "Okay, I think it's for you, Dad." But, so I mean, we had a strong affection for each other. One of the bad habits Don picked up at the institution was he smoked a lot. And I mean, that was like one of his main things,  smoking.  I think a lot of people that live in institutions, they guard their possessions because things get stolen, you know? So he really, especially, I think cigarettes, you know, if you think about institutions, unfortunately, if you think about jail, cigarettes are almost like a form of currency, you know? And so I think that was similar where he lived and they had a lot of importance to him and he developed some things like he would smoke cigarettes up his nose instead of his mouth which didn't help portray him as a typical person, but it was something that is more unusual behaviors are more the norm in institutions, nobody comments on them. There's high tolerance for anything like that. 

Katie: [00:14:00] Right. And low expectations. Yeah, no expectations. So you all came together as a group of service workers and you held a kind of a meeting around Don's passions and interests and his dream, and one of the things that I love that came up during that meeting as one of his biggest strengths was that he's an accomplished smoker.

Denny: [00:14:21] Very accomplished smoker. Yeah. 

Katie: [00:14:23] So you take these things that were typically seen as odd behaviors or odd absurdities about Don and you find the strengths in him. And so what other things came out of that? And what were the steps that were taken after that meeting that got him home? 

Denny: [00:14:42] So the defining comment that came out of that is, "I want my own key. I want my own key. "

And that had a lot of resonance for everyone, I think, because, it really indicated such a yearning for home and my own place, or at least away from where I live now with all these other people that I don't want to be around. 

Katie: [00:15:08] Certainly he had roommates and yeah, no privacy. 

Denny: [00:15:12] The only people that had roommates were the people that were violent. 

Katie: [00:15:16] Okay. So that's one way to get your own 

Denny: [00:15:18] room.

Exactly. People figure that out pretty quick. Like the woman that told me, I heard her talking to another woman and said, "Don't ever tell them what you like. They'll make you earn it". Overheard that, you know? And that's kinda like, yeah, there you go. I mean, so people who live in institutions figure out the culture, you know, they may have an identified disability, but that doesn't mean they're not perceptive and they don't understand what's happening.

But anyway, he was such a survivor. And so, his strengths: accomplished smoker, a strong survival instinct and ability to mobilize people on his behalf, because we all felt compelled to help Don,  because his passion was so strong. You know, he had such a long memory and a strong passion to be living back where he grew up, to rediscover his lost life, I would say. 

 Don and I  did speaking engagements together. We went around and talked and Don had a compelling story to tell. So he became sort of a minor celebrity in DD circles a little bit. And as a result, he lived in Butler County, but the superintendent at the time from Hamilton County was very touched by his story and contacted me and said she would allocate funds for Don to move out of the institution and live in Hamilton County. 

Katie: [00:16:39] And back to his strengths that he knows how to organize people around what he needs. 

Denny: [00:16:44] He knew how to motivate people, you know? And he knew how to touch people.  He was, again, that whole narrative of "I'm a survivor. I'm going to outlive this crap. I'm getting out of here."  It really did  mobilize people and, it mobilized the superintendent at the time. 

Katie: [00:17:01] Yeah. It gives me chills to think about somebody who knew what he wanted all those years. 

Denny: [00:17:06] He had a strong yearning, you know, and he never used these words, but I think he felt like his life had been stolen from him and he wanted it back and he was not going to rest until he got it back. 

Katie: [00:17:20] Absolutely. So, the superintendent gives him this ticket out? 

Denny: [00:17:25] Well, they found a provider that agreed to provide services and support Don living in the community. An apartment was found on Gracely Drive, where he wanted to live, but really what he wanted was to live back in the house he grew up in, where nephew Ricky was living and he wanted nothing to do with Don. As a matter of fact, one time Don and I were walking down Gracely Drive and Ricky drove by in his car and pulled over and said, "What are you guys doing here?" I said, "We're looking for an apartment for Don".  And he was not pleased, he felt like, you know, and that was his family, but again, he was young.

He totally internalized the whole narrative of the crazy uncle who belonged in the institution. Yeah. And he didn't know the real Don. 

Katie: [00:18:11] There's fear in that. There's all kinds of things to unpack about. 

Denny: [00:18:14] Resentment. Like "Why is he back? He's got a claim to this house".  

Katie: [00:18:19] Public shame or...  There's something  inside that nephew too. Anytime there's a way into somebody's heart to see somebody as human, that is the way to reform or treat somebody family member.  That hope, I even hear that nephew. And I think if he knew Don the way you knew him, his heart could change.

And  it's when we're in relationship, it's when we're in community, that hearts are changed, not when we keep each other separate in systems and institutions. Clearly that's the division. Yeah. 

Denny: [00:18:53] You have to be known. I mean, you know, that's what makes safety in the community is when you know your neighbors. You're known by people. People look out for you. You look out for them.

There's are reciprocal relationship. 

Katie: [00:19:07] So you found an apartment on Gracely Drive?

Denny: [00:19:09] He moved in. I remember, I drove over and picked him up. There's a funny photograph. I think it's funny, of Don looking all pissed off cause he's with three staff and that like one is the social, the young, sorry, I don't mean to be stereotypical here, but the young perky social worker who's about 22. Then there's the nurse, who's worked with Don for a long time and she's smiling. And then there's the direct service staff from the institution that is looking just as like pissed off as Don is. It's funny, you know. 

Katie: [00:19:45] That picture is in the show notes or it's linked somehow to this podcast, so if you want to check it out, you can see it. 

Denny: [00:19:51] But  I think, one of the things about direct service staff during this era, and I don't want to, you know, tar everyone with this brush. I mean, there's lots of great direct service, support staff, wonderful people that are doing everything for the right reasons.

But in this era in large institutions, especially I think the staff and this is probably still true for a lot of staff, but they would tend to focus on the deficiencies of people that they purportedly supported, rather than the strengths, the gifts, the passions, the skills, the interests. You know, they weren't interested, they didn't see any of that. They just saw a guy that smoked cigarettes up his nose. He had no teeth,by the way, that were all pulled out in the institution. I don't know why, but he had not a tooth in his head. You know, he did have false teeth, but he refused to wear them,  in typical Don irascible fashion.  That was part of the difficulty, I think, for a lot of staff.

Katie: [00:20:55] Yeah. And his face at the cottage institution when he was leaving or was it the cottage there? 

Denny: [00:21:00] Yeah, yeah, yeah. Yeah. He didn't look happy. He looked irritated in that photograph. 

Katie: [00:21:05] Then he gets to Gracely Drive?

Denny: [00:21:06] But he gets to Gracely Drive. You know, we got him a key. And, you know, something he could wear around his neck,because that's what he wanted, even though that's not the most typical thing. And it kind of identifies him maybe as you know, we were working on changing that. 

Katie: [00:21:20] Just imagery-wise, you mean? 

Denny: [00:21:21] It's not the best.

 Exactly. Yeah. I mean, you know, most people don't have a key on a ring around their neck, you know, and a chain around their neck. But, anyway, that's where we started. And he was really happy. He had an easy chair in there. And he was pretty happy to be there. But to him, Gracely Drive meant moving back to the house he grew up in. So there was that. 

Katie: [00:21:45] 30 years ago, right? 

Denny: [00:21:46] Exactly. But Ricky was living  there and that wasn't happening. 

Katie: [00:21:51] Yeah. Real world isn't always what it is in our minds and in our dreams and what we what we aspire for.  So when you started walking around the neighborhood with Don to kind of get acclimated to this new world of 30 years later Sayler Park, did you find any people who knew him?

Denny: [00:22:10] Well, the next door neighbors, there are the people that lived a couple doors down from that house. They were elderly now, but we stopped over to see them and they were happy that Don was back and we had tea and cookies 

Katie: [00:22:23] Are these the same neighbors that he used to talk about?

Denny: [00:22:25] Yeah. 

Katie: [00:22:25] Oh, wow. 

Denny: [00:22:26] Yeah, they were still alive. Although, Bill died shortly thereafter, the husband.  They were both  in their probably mid to late eighties, I would think.  So they weren't getting out and about too much. They were pretty much home bodies. 

Katie: [00:22:39] What a beautiful reunion. Were they surprised to see him?

Denny: [00:22:45] Well, I had had contact with them. That was part of the legwork I had done earlier, notifying them  and contacting them.  And we had been over to visit them before. 

Katie: [00:22:55] So what was the reunion like when you first went? 

Denny: [00:22:58] It was touching. Yeah. It was touching. There was a little hug from the, I forget the wife's name now, Harriett, and maybe .  But yeah, it was very sweet and Don was happy to see her and I think he felt a little bit of a homecoming then, so that was good. Yeah, that was great. 

Katie: [00:23:17] Tell me about the safety that he experienced home on Gracely Drive and the safety he experienced in the institution. Can we, can we draw a comparison? 

Denny: [00:23:28] Sure. I mean, well, that's, we'll talk a little bit in generality, but you know, I mentioned before a lot of the staff see deficiency, not gift. The training isn't particularly good. A lot of staff when left to their own devices are capable of some very bad behavior. Don talked about when he lived at Orient, someone held a knife to his throat and he said it was a staff person. I believe him. I mean, but you know, who knows?  He was robbed a lot. He had personal possessions stolen, a lot money.  When he lived at Orient, I didn't witness anything like that, but in institutions a lot of times, people are vulnerable and part of it is even though they live in an institution, they can still be isolated and lonely. They're not really very happy to be there. I used to think this was very ironic, you know, that people don't even have a space or a time when they can be alone. And we used to fund, like in people's plans, there was actually alone time with something that was allocated. They get three hours of alone time a day, which I always thought that was for all good intentions, but you see how weird that is. 

Katie: [00:24:39] It's still in people's plans where this person gets no alone time, right? 

Denny: [00:24:44] No alone time, meaning they have 24 hour, seven day a week supervision. Does that make them safer? If their staff is good, if they have a relationship with their staff. The quality of the service is only as good as the quality of the relationship. And one of the things about community services are that direct care staff are turning over constantly. There's always new people and some of them are not good. Some of them are just there to make 10 bucks an hour or 12 bucks an hour. I mean, they're not paid. They don't have a commitment to the work. And sometimes they're resentful, because of the lack of training, they tend to interact with the people that they're supposed to be respectfully supporting like they're a bad child. 

Katie: [00:25:34] It's lack of training in the good training sense and it's poor training, too much bad training. Right? It's to get to your point that it's deficiency based. There's still a lot of deficiency based training out there. In terms of "This is your behavior plan, and this is the person's case file. And let's go through and not think about anything that is about their passions or interests or strengths."  It's about  "This is how you have to show up for this person to, quote unquote, be safe because they are violent or they are these things"  that get labeled onto a person and then they never leave.

 And to your point about the institution saying  you believe him when he tells you these stories, but no one was there to even witness it. 

Denny: [00:26:17] Exactly. No one is there to know if things aren't going good. Or no one comments. I mean, theoretically there's a quality assurance, even in the state institution, there were supposed to be some kind of quality assurance, but really that didn't exist. It was just kind of what went on behind closed doors.  I don't have to tell you there's all kinds of horrible things that have happened. You know, you think about Willowbrook,  if you've ever seen any footage of that or any of the big state institutions. It's just not a good thing to do, segregate people.  It's bad and congregate them. 

Katie: [00:26:50] And what you're saying is that people are still home in situations where they're not known by neighbors. And the only people they know or who know them are staff, and there still can be things that happen behind closed doors, to your point of  it depends on their quality of the relationship and the training of these direct support workers.

And so while we might have a different iteration of what an institution looks like, we still have these abuses happening in people's homes.

Denny: [00:27:17] I think people who need support come to believe that they deserve no better. This is like  as good as it gets, a staff person that resents their presence. Part of it is too, there's no recourse, like what do you do? Who do you tell? In theory, now you can talk to your SSA and say "This is bad. And I went out of here."

Katie: [00:27:41] Who also turnover on a pretty regular basis. 

Denny: [00:27:43] Right. And who also are hamstrung by lack of options. 

Katie: [00:27:47] And a huge amount of people that they're working for.

Denny: [00:27:50] Exactly,  too many people to know all very intimately. You know, and there's not really many options for, this person's  already placed. So that's one less person to worry about, a lot of times they get discouraged from wanting something better.

I think it's 

Katie: [00:28:06] pretty obvious to the listener but I want 

Denny: [00:28:08] to 

Katie: [00:28:08] make sure we do make the distinction between Harriet and Bill and a direct support worker in a institution. 

Denny: [00:28:16] Yeah. All right. I mean, they're, those are like citizens, free citizens that have want to have a relationship with Don. They  remember him when he was a boy. They have a lot of affection for him. They want things to go better for him. They were sad the way  his life turned out. Staff don't know Don, they don't know that history and they don't typically find out anything about his history. 

Katie: [00:28:45] And then there are staff like you who are more of the Jedi staff. So there are Jedi staff out there and there are people who have been direct support workers with the same people for 30 years.

I just want to acknowledge that and they are caring, loving, presences in people's lives. 

Denny: [00:29:02] There are lots of good people that do this work. It's just that they're not all good. Like anything. 

Katie: [00:29:07] Yeah. So it's like the risk there. There's just a risk. And the greater  the risk is that less people who know that person who aren't necessarily paid or trained to control them or  support them.  They're not paid. They don't have a manager telling them what to do. You're somebody who who's known Don his whole life and you care about him.

And that's not to say things in the community can't be dangerous, but I think really teasing this out, it's about how many eyes are on everyone. So are you one person in a house, an apartment with only staff and no other eyes on you, but staff? Or are you on Gracely Drive, walking down the street in a community of a lot of eyes where people are looking out for each other?

 And that's why it's so important when we talk about community building. It can't just be in community, in isolation. It has to be in community  in a fabric that's woven together of people who know each other and kind of look out for each other. Right?

Denny: [00:30:15] And predictable patterns are good,  like go to the coffee shop every morning at nine o'clock and you kind of get to know people, or go to the library on a regular basis and get to know people that way.

So there's strategies and rhythms that are more conducive to community building that can counter that possibility of isolation. Even with Don, the staff weren't really into putting themselves out. The fact that, frankly, the Butler County SSA director was his pal gave them some purchase to be on their toes a little bit more than they typically would.

Or if his sister and nephew had been around more, it would have been the same. It's like with anything, when people see that you're valued by others, then they tend to treat you with more respect. But if you have no connection, no relationships, nobody that really cares about you then, it's easy to get isolated and alone and be more vulnerable. 

Katie: [00:31:21] Throw away. 

Denny: [00:31:24] Most people with disabilities are poor.  Seventy-five percent are still unemployed. I think maybe  that's improved a little bit, but that was the stat.  So poor people don't have a lot of options. They're more at risk, frankly. So that's part of how it goes.

Katie: [00:31:44] There is a lot of hope right now in that what we're doing at Starfire and with Goodlife Networks is part of that hope. And this is a reminder about why we do it. 

Denny: [00:31:54] It's where we've come from. it's the way that benevolent services were envisioned were, under the best intentions, put people together and keep them with their own kind and protect them. Like I'm sure that doctor, when he told Don's mother to move him into Orient had good intentions for Don, but he didn't know the reality of what life was like there. 

Katie: [00:32:18] And if we don't talk about the realities of what can happen when, then it's going to be another doctor down the road saying something. 

Denny: [00:32:25] Don basically had no choice, no connection,  no real support. He never left the institution. I think, the work we're trying to do now is have people be known.  It's more on community.

And Harriet and Bill, they  don't have a son or daughter with a disability, but they're part of the community. Clearly they know people on their street so, "Come on in, lets..." 

Right. They have a long history of that. They had a long history. 

Katie: [00:32:51] A lot of allies and people that I think are going to make it more rich. So take me back to the day of Don's funeral and tell me what that was like. 

Denny: [00:33:00] Well, it was pretty sad because Don  had only moved into his apartment nine months before. And, as I've said, the many years of living in the institution had taken its toll. I mean, his main form of recreation was cigarette smoking cigarette smoking up his nose. So after about nine months of living in his own apartment, he just stepped out of the shower one day and keeled over,  had a heart attack and died. So it was very sudden. And he was 63 years old when he passed away.  I felt pretty sad and a lot of people did because  he had had such a long journey on his sort of circuitous path on the way back to Gracely Drive. There were a lot of human services people at his funeral. the superintendent that funded his services came.  All his family  came.  A lot of people from the community came, a lot of people from Sayler Park when I didn't know who they were, came, that knew Don or remembered him or knew his family and came to pay respects.

Katie: [00:34:07] What do you think it would have looked like if he was in the institution when he died? 

Denny: [00:34:12] Yeah, I don't know. I mean, you know, there was a whole thing about when I was working, if someone died and they had no one, which was common, there was no one to pay for the funeral and you couldn't use support dollars to pay for a funeral. So we would literally pass the hat. 

Katie: [00:34:33] Wow. 

Denny: [00:34:33] Yeah. I mean, so what does that tell you? It would have been more like that. You know, maybe because he'd  lived in a state institution, the state, I don't know, but... 

Katie: [00:34:42] Who would have been there? 

Denny: [00:34:44] Yeah. Me and a few, you know, staff, some staff would have shown up for sure. I know.  Certainly nobody, from the  community in Sayler Park or unlikely. His sister and I doubt if his nephew would have come. His sister might, cause I mean, it was right on, the funeral home is right on Gracely Drive. That was right in Sayler Park, in the heart of Sayler Park. You know, if he had died in Fairfield, then that would have been totally different.

Yeah. It's hard to say, but it would not have been in a community event of people coming together to remember and pay tribute to a tenacious old coot like Don. Well, that's what he was. 

Katie: [00:35:25] When you first told me that he died only nine months after he moved in, I thought, "What a tragedy,".  I was really heartbroken by that. And then I thought about it and I just realized, you know, it's actually such a triumph that he spent his last days exactly where he wanted to be. And he was home when he passed. 

Denny: [00:35:45] Maybe not exactly, but as close as we could get him, you know? And so, yeah, it was definitely a big improvement.  A lot of people expressed  similar  comments as what you just said that, "Well, he ended up his life where he wanted to be." And that is true. I'm always like, "Well, it wasn't exactly". But, but no, I mean, generally it was a thousand percent better.  And you know, it's hard. There is no ideal. Let's face it. A lot of people never achieve their dream, but,  that was a pretty good effort to do it. 

Katie: [00:36:17] Yeah. Well, thank you so much for sharing the story. I think it's really important. One to remind us about community and how lucky and fortunate so many people are to live on a street with neighbors and to start to recognize that as, "Hey, maybe I should go talk to these people."

Denny: [00:36:35] Yeah. When you bake bread, you make two loaves and give one away, you know? 

Have a block party. Whatever. Drink a beer with your neighbor on occasion. Or a coffee.

Katie: [00:36:44] Look out for each other. Right? 

Denny: [00:36:46] Exactly. Look out for each other. Most importantly.

Katie: [00:36:50] Thank you. 

Denny: [00:36:50] Thank you. 

Katie: [00:36:51] Thanks for your time. 

Thanks so much for listening. If you are interested in learning more about what Starfire does head over to our website. Starfire cincy.org. And maybe while you're there drop us a donation to keep good work in the lives of people with disabilities and families going. .

In this episode of MORE I ask the question, is it ever too late? Is it ever too late to build a social network? 

Nancy, who is mother of 3 adult sons, answers this question and shares her family's personal journey to build more connection and belonging  alongside her son, Steve, who has autism. I hope you enjoy this.

Nancy: [00:00:29] I am Nancy Fuller and I am humbled to be here today just to share some of our story. I am a mom of three adult sons. And a loving husband. And one of my three sons has autism. His name is Steve and he's 26 years old. 

[00:00:51] So the journey we've been on with him in our lives has been ups, downs, challenges, blessings, but overall, a [00:01:00] really good story that's forcing us all to grow. And I don't claim that we've arrived yet, but we at least at this juncture know the direction we're heading.

Katie: [00:01:10] Yeah. So Steve is 26 and you said you've been on this journey sort of growing with him, through him, because of him. So tell me what has that looked like throughout Steve's life? What does that meant? Maybe from the time that he was born until today, what are some of the main growth points would you say? 

Nancy: [00:01:31] Yeah, that's a great question, Katie. What I would say is the first couple of years from when he was diagnosed at just under age three, the first two years were probably just incredibly challenging as I look back. And it's because we didn't have a plan. And the plans that were offered to us weren't feeling right inside and out.

[00:01:55] And it was all about just get him therapy. [00:02:00] And it just wasn't helping him grow. So the first two years from age three to five, I would tell you: he was kind of just flat-lined and he wasn't talking. He was in a diaper. He had no language. He was self-absorbed and I knew there had to be more. So I was working full-time, two other children. But nonetheless, I kept searching. I just didn't like the opportunities that were presented in terms of solutions because I didn't see them as solutions. So when I stumbled over my cousin sent me a book and it was called Son-Rise: The Miracle Continues. And it's S O N, Son-Rise. I read that book and before I finished it, I knew I had to go learn about this program.

Katie: [00:02:47] So that was your first point of growth, would you say? 

Nancy: [00:02:50] Absolutely. 

Katie: [00:02:51] It was kind of realizing like none of this really feels right. These plans are they're just off. They're not right for my son. They're not right for my family. And then what about [00:03:00] Son-Rise resonated with you? 

Nancy: [00:03:01] What resonated me about Son-Rise was, it didn't feel like we were going to force him into our world to comply in a world that he didn't understand. The whole philosophy of Son-Rise is to, if you will, get to down on your hands and knees, join him where he's at, not mimic him, but really try to understand what is he appreciating in this moment and being present one-on-one was vital. Because you can't with distractions, with too much stimulation, too many people, you can't get someone's attention, particularly with autism. It's just too hard. So what resonated with me was, we want to meet him where he's at, not forced him into our world. 

Katie: [00:03:53] Yeah. And when you met him where he was, what was the journey like after that? And where was the next point of growth [00:04:00] for you all? 

Nancy: [00:04:01] So it was pretty awesome that he started growing right away and we only started with a team of family members. It might've been two or three, four of us. And my husband and I went away and got trained on how to run a home-based program. And we came back, and we were all jazzed, and we would talk to family, and we were all working with him one-on-one.

[00:04:27]So we ran this program for approximately seven years. 

[00:04:31] And so he grew a lot in that timeframe, but we also knew after seven years that it was time for him to try to re-engage in the school system. So we exited the Son-Rise Program in our home when Steve was in middle school. So we went ahead and moved him into a special ed specialized class for people on the spectrum in our local middle school. And what I would [00:05:00] tell you about that, that really was a big change, two things. The first thing I'll tell you is that the people were very generous. And their hearts were all in the right place. So I never want to diminish any of the teachers that connected with Steve because they were all trying a lot.

[00:05:19]But what I would say is that his learning kind of went flat line again, like before we were doing Son-Rise, it was flat. And we did  Son-Rise and then it jumped. Then we go back to the school system, which is a group setting. And there's lots of people, lots of distractions, lots of overstimulation. 

Katie: [00:05:43] And was this a separate classroom , like a special needs classroom? 

Nancy: [00:05:46] Yes. 

Katie: [00:05:46] Okay. Yeah. 

Nancy: [00:05:48] Yes. 

Katie: [00:05:48] So he wasn't integrated?

Nancy: [00:05:50] He was not integrated and occasionally  a neuro-typical student would come in but not very often. And he craved that. [00:06:00] He would even run out of their room and go up to people and just start talking to them sometimes appropriately inappropriately just to get someone else's attention.

Katie: [00:06:08] Yeah. 

Nancy: [00:06:08] So he needed to be stretched beyond where he was today at that time. And that just wasn't possible in the setting that he was in. So he made it through and graduated from high school. But I would tell you that period of time, I didn't see nearly the level of growth that we saw prior. 

Katie: [00:06:32] What was next? 

Nancy: [00:06:33] Yeah. We were trying to figure it out. And a lot of parents that the school system kind of directs you and they tell you to start talking to the County about your options. And we were  fortunate enough at the time to get one type of waiver.

[00:06:49] And what that waiver supported in his adulthood, was for him to attend adult group programs of multiple disabilities typically. [00:07:00] And so we didn't really know we had other options. And so we started with that and we interviewed a number of places. We started with one we thought would work and the ratios were too big.

[00:07:14]It was like a one to five or something, and Steve needed a little more attention than that. So even though it was very art-based, which was really cool  for him,  we ended up exiting there. Then he went to another adult program and he was just with a bunch of people with special needs.

[00:07:32] He wasn't out in the community. He was being isolated. And what we noticed was he was getting bored and sometimes would have behaviors acting out. And to me, that was a direct correlation to, "this is not purposeful. This is not stimulating me. And I don't want to color this rock". 

Katie: [00:07:54] He was communicating? 

Nancy: [00:07:56] He was communicating through his behavior and there's one place I'll have to tell you that it was [00:08:00] hysterical. They called me up after he was doing some behaviors couple of weeks before and I'm thinking, hmm, this isn't working. And Steve finally made the final call and he went outside. They were walking outside and he saw a man-made lake and he went and jumped in the lake. 

[00:08:20] So I get that... 

Katie: [00:08:22] It was very typical for like a college age boy to do though, is like, this is how I'm going to rebel.  

Nancy: [00:08:28] That was the mass rebel. And that is when we knew, okay. So little behaviors here, little behaviors there, Steve is sending us a clear message, "I am done with this". 

Katie: [00:08:37] Oh yeah. Yeah. And then you're saying before you, like, you weren't really sure what your options were and then all of a sudden you were getting clear and direct messages from Steve. This option's not working. So you started seeking probably out some something else. And at that point, would you say it's fair to say, like Steve didn't have many connections in the community or many relationships?

Nancy: [00:08:59] He didn't [00:09:00] have any.

Katie: [00:09:01] Okay. 

Nancy: [00:09:01] He didn't have any. The only connections he had would have been with staff and some of the other members of any group program. But none of those people became really what I would call friends that we would see outside of the daycare or the group care. 

Katie: [00:09:19] So at this point he is probably around 25 and you're starting on a path which is towards community. And part of that is you got connected to one-on-one work with Starfire and you started exploring that together. 

Nancy: [00:09:34] Yes. 

Katie: [00:09:34] So do you think  at that point, were you worried or  were you having doubts that it was too late to start building a social network?

Nancy: [00:09:42] I did not think it was too late because I'm a believer that growth is always possible. But what I would tell you is I didn't know how to do it. So I saw the theory, and I saw the concept, and I started attending some community meetings at [00:10:00] Starfire to learn more, some speaker series to learn more.

[00:10:03] And the more I learned, the more I liked it and the more I realized, oh my gosh, it's back to one-on-one. And you know, what I really realized about one-on-one that's so special is that, that's when each of us is really seen for who we are , or understood, and we're respected. And you start to get in any ratios that are bigger than that. And each of those items gets diluted. So I knew growth could be possible for him. I just wasn't sure exactly how we were going to do it. 

Katie: [00:10:42] What did it end up turning to? What path did you end up taking then? Where did you take things once you're learning these concepts and  you're starting to get re-introduced to what you and Steve had done when he was a child which was one-on-one you supporting him? Now you're doing [00:11:00] one-on-one with a connector supporting him. What were the steps then? Cause you were saying, I didn't know where to begin.

Nancy: [00:11:06] Right. We've had a couple of connectors and they started showing us the way by starting to say, we have to start with a place.

[00:11:15] And we have to start with an area of focus that they might be passionate about Steve might be passionate about. And so as we knew, he liked art. It was just about putting one foot in front of the other to say, what type of art things could we explore. And what I realized, and I realized this was the Son-Rise Program.

[00:11:35] And then I realized that again in his adulthood, that this was not something for me to delegate to somebody else to figure it all out. This is my journey too. And my journey is not to do all the work, but it's to help find the wonderful people. And my [00:12:00] journey is to explain his passions and to watch for people that have a magnetic pull to him. And help make the connection happen and then start to build the places, the choices, the contributions, and gain the respect with the relationships.

Katie: [00:12:18] I think that's so powerful. You stepped into some place of ownership without being overwhelmed. You weren't saying, "Oh my gosh, this is too much. How are we ever going to get all this done? How am I ever going to get this done?"

[00:12:33] You started seeing your piece in it. Your role in it was a part of it. And part of that was inviting in people to help as well. And which is what you did with Son-Rise, right? 

Nancy: [00:12:45] Which exactly what I did with Son-Rise and it was the same type of inviting welcoming spirit is what I needed to do again. So it was like the whole cycle completely repeated itself [00:13:00] from childhood into adulthood. And the power of one-on-one, the power of relationships, and the power of following your passions, those themes played out twice. 

Katie: [00:13:14] How are they different this time around? Because I guess my next question there where I'd like to  head is, who is in Steve's life now? And where does he belong? These are places that are new and different; and people that are new and different, because of the one-on-one work. 

[00:13:33] So how has the difference between maybe the one-on-one connecting that you did, the one-on-one work you did or support you did as a child with Steve? And then the one-on-one work now that as an adult, is there a different intention behind it?

Nancy: [00:13:47] Some of the intentions are the same. The platform is different. And the one-on-one at home was in a dedicated playroom  and a very tight window right of [00:14:00] space. The adult playground is the world. It's the neighborhood and it's the world. And so the platform is much bigger. And so the possibilities are much, much bigger, but the intention I think is very similar. It's to connect one-on-one with people, build a relationship, build trust, build respect. And what's different also is, we did a lot of one-on-one with Steve in his playroom in the Son-rise Program. The goal now is to do one-on-one, but to keep adding one, one at a time. Our goal isn't to go to a concert and have him meet a hundred people in one night. It's to meet one more person that has a connection with Steve that adds on.

[00:14:56] So it's just one at a time. And I think what can be overwhelming [00:15:00] is to think you've got to run some big, huge program. And if you take it down,  all I'm going to do is pick one sector of his life, one place to start, and one person to help me take him there. You have the intention every morning that that person is going to show up and you followed that lead.

Katie: [00:15:23] That was so beautifully said. I think it is a long journey and that, that is one step in front of the other. One foot in front of the other is kind of how you just put it. And connections, beget more connections.  But it is just taking that initial step that might be hard for people who think that it is too late.

[00:15:44] What would you say for people who say ,"I, my son or daughter, my loved one is too old that they've got no connections. We have nowhere to start." What would you say to that? 

Nancy: [00:15:56] I would say that's absolutely just not truth. [00:16:00] I understand people that would say that why they would say it because it's a scary thing to step out into but it's not truth.  And what I'd like to say is that one other big lesson I learned from Son-Rise that's carried me forth to be courageous in his adulthood is that I learned at Son-Rise when I would ask someone to volunteer four hours a week one-on-one with Steve; initially that was the hardest thing I've ever done. Why would they want to come do this for our family?

[00:16:34] But what I found after that person would leave our program six months, a year, two years away, they would sincerely tell me that they gained a lot more love, and respect, and just cherish that time, way more than they ever gave in time. So when I realized that, I realized, oh my gosh, this is good for other [00:17:00] people.

[00:17:00]And they will learn about just being present with one person and the power of that. So by us keeping them locked up at home safe , we're not doing our children justice, but we're really not doing the community justice because our sons and daughters  have the ability to have a ripple effect in their own community of opening the eyes to their beauty. But they aren't going to see it unless they see it one-on-one.

Katie: [00:17:30] What would be a piece of advice that you've learned from this? What would be something that you would tell other people? That's maybe been something that you've heard, or learned, or grown from yourself personally.

Nancy: [00:17:42] Yeah. I mean I would tell you in thinking about our conversation in advance today, it really came to me as I sat quietly this morning of what I'd like to have written on my tombstone. And it's not that I'm there. It's who I'm becoming [00:18:00] and what I'd want it to say Katie is: it's never too late to grow, it's never too late to heal, and it's never too late to love.

Katie: [00:18:10] It's a beautiful legacy. It's a beautiful thing. It's a beautiful reminder for everyone to not get stuck. 

Nancy: [00:18:18] Yeah. And it's all about who do we want to become. And growth is possible . But you have to open up your heart and that takes vulnerability to be able to open up your heart and take a risk by inviting someone else into your world, but it'll be worth it.

Katie: [00:18:41] Thank you so much. 

Nancy: [00:18:42] You're welcome. 

Katie: [00:18:42] Appreciate it. 

Zoom Call Crafts Club is one of the innovations that Anne and Ric brought to 2020. In this episode, you’ll learn about the ways Ric and Anne have designed community around the barriers a pandemic and social distancing bring.

Highlights:

• Hear about how they’ve kept in touch with friends virtually

• Reflect on the current events related to racial injustice and police brutality

• Anne reads her poetry

• Learn about a project they’re working on for greeting cards to isolated people

Listen to PART ONE to hear how they began their work together and made connections initially, pre-pandemic.

GET THE PODCAST

“Um, well, my poetry is very inspirational and very creative. I’ve been writing lots of poetry about what’s been going on in the pandemic right now.” —Anne

Katie B: Anne and Ric are cohosts of this next episode. This is part two, if you’d like to go back to listen to the first part recorded one year ago you can go back and do that. This is documentation of life during a pandemic. What does it look like to build community, design community, and connect with other artists in your neighborhood when there are social distancing rules and everything is virtual? So you’ll notice how some things change and some things stay the same. Anne also reads her poetry in this episode, so there’s lots packed in here. I hope you get a lot out of hearing from these two. They have so much wisdom to share around building community and making connections.

(1:01 – 4:40)

Ric: OK so we are rolling now, today is Tuesday August 18th 2020, my name is Ric James and I’m a community connector with Starfire

Anne: I’m Anne Elizabeth Gearhardt I’m almost 23 tomorrow. I am a poety and I’m also an artist

Ric: Indeed you are. Happy birthday to you! We are on Anne’s back porch right now, nice covered screened in pation and if you listen closely you might hear rain falling

Anne: And thunder

Ric: In spite of the rain it’s a beautiful day, and thank you Anne for sitting down for this interview today.

Anne: You’re welcome!

Ric: So we have been working one on one in the Starfire community connecting program for a couple years now. And as many people know if you’re listening to this we are in the middle of a global pandemic, which is kind of a big deal! It’s an interesting time to be alive, it’s also a scary time because we have a lot of anxiety and uncertainty about the future, but we have already discussed this, Anne, you and I, about how the pandemic is affecting things around the world. But the Starfire mission - to help create a more inclusive future – our mission isn’t changing, but our methods are changing. So today we just wanted to talk to you about what we’ve been doing to help you maintain your connections and friendships and help kind of deepen and strengthen the relationships in your community, and tell us about some of the people we’ve met together, some of the friends you’ve made, and how you’ve stayed connected during the pandemic.

Anne: Well I haven’t talked to my friends in a while because of what happened with the pandemic. They have businesses still shut down, I’ve been connecting with Maria and Trace from Luckman’s coffee shop

Ric: Yes Maria and Trace have been great friends to us as we’ve set up our unofficial headquarters, which we haven’t been able to go to since the pandemic, but our regular visits there definitely started to form a bond and a real friendship with those two. Maria recently joined your zoom call crafts club, correct?

Anne: That’s correct!

Ric: Let’s not get too far ahead, tell me about the zoom call crafts club

(4:40 – 11:55)

Anne: Well the Zoom Crafts Club is when you can get together and make your own personal art, all together, but you can do it online by zoom. And you can make other things on your own.

Ric: Yeah, this has been a really interesting experience for us to explore together because  before the pandemic, one of our things to do together was about once a month at your local branch of the library they had try it out Tuesday. A librarian there named John would host a crafts event and with a small group of people we would create something there. And once the pandemic shut things down a lot of their locations and their various programs they offer, you and I were looking for a way to continue making arts and crafts projects with the people that you met in the community, specifically Sherry Clink, who we met at the library. She has been a regular member and contributor to your zoom call crafts club. Tell us about Sherry.

Anne: She’s very fun, and very creative, and a great friend to have. Yeah, she’s a wonderful woman.

Ric: She really is, I found that when you and I came up with this idea together after we did a zoom call, we said well what if we did a zoom call where you bring whatever art supplies you want, so while we’re on the zoom call you can be drawing or sketching or painting. In your case Anne because you’re an artist and a poet you were also writing poetry, reading some of your poetry during the zoom call, and we were able to draft Sherry into that call right away. And to her credit she is a great creative thinker because she was enjoying our zoom call craft club right away, but she also had a suggestion for us to join in with this art class we did together where we did a vision board workshop, do you remember that?

Anne: Yeah

Ric: What did you think about that?

Anne: I think it was really fun! I already made my vision board, and it was really fun just to get extra creative

Ric: Exactly, I thought that was an interesting experience because if you’ll recall that was 2 weeks a row we were on a zoom call with a large group – 35 or 40 people. Most of them were just the audience and then there was the instructor. The first week she told us about a vision board and then the next week we got to talk about what we were working on with our vision board, and that was all Sherry’s idea. She brought that suggestion to the zoom call crafts club. So she’s not just a contributor in the zoom call crafts club, which I sometimes call the ZCC, wait its 3 Z’s, ZCCC, so we’ve done a couple of these virtual events together with Sherry and I think that’s done a great deal to help you and Sherry deepen and strengthen a friendship we started at the library late last year before this pandemic. So who is the newest member of the ZCCC?

Anne: Um that would be Maria

Ric: Correct, our favorite barista at Luckman Coffee on Beechmont. And in all fairness to Trace, maybe we should say Maria and Trace are tied for first. They have been so good to us for so long, you can tell every time we walk in there they really care about you. Didn’t you go there once with your mom so they could meet?

Anne: Yeah, we did.

Ric: Yeah, so our most recent crafts club meeting we were joined by Maria, and so now our group is up to four members and we have extended the invitation also to Trace at Luckman, so hopefully he will be able to join us soon and then I won’t be the only dude in the club anymore. But moving forward with the zoom call crafts club, what do you see there? What would you like to do as a group with Sherry and Maria?

Anne: Well I’ve been making lots of fun, creative bookmarks lately.

Ric: Bookmarks?

Anne: Yes.

Anne: And also poetry, and I want to combine them all together so I can talk about what has been going on with this pandemic and what’s happened to George Floyd.I don’t mean to get to overwhelmed about this story about George Floyd, but Derek Chauvin, he’s the one who killed him.

Ric: The officer?

Anne: The officer, yeah.

Anne: When Derek Chauvin did that to George Floyd I actually felt bad about what happened and I was scared the whole time and it made me feel angry about it and that’s how other people have been feeling about what happened, and yeah

Ric: I agree with you and I’m glad you feel free to speak your mind, as you should. You’re in your own home and you are entitled to your feelings, and during this interview you should speak freely as you see fit. And I agree with you, with George Floyd, murdered in cold blood, I know that most police officers are good, but there is a problem in this country and that is an extreme incident that has a lot of us taking a closer look at the racial inequalities in this country, you know systematic racism. And so you have a voice and you should be heard, and I think this is something, this is a theme I hear recurring every day, and that is basically you have a voice and you should own it and be proud of it and speak your mind. Tell us, if you don’t mind, just a little bit about your poetry, what it means to you, maybe what you’ve been working on lately.

(11:55 – 14:20)

Anne: Well my poetry is very inspirational and very creative, I’ve been writing a lot about the pandemic, what’s going on in the world right now.

Ric: Do you have any recent poems or something you’ve written that you’d like to share?

Anne: I do actually, I have one poem. Just for now.

Ric: Would you like to read it?

Anne: Yeah of course! Before I read it, this poem is for everybody who is listening to this recording right now. This poem is very very inspirational it’s for all of you guys. Okay, Poem of the Day:

You are beautiful just like you. 

That is you are 

just like in life.

am your voice, 

I am a woman, has a 

Heart

 just like you, 

if I was you, 

always right on your voice.

So that poem is all about who you are in life

Ric: You know it’s interesting to me because there is this theme of self empowerment that runs through your poetry and it’s very strong, very positive recurring theme in your poetry and I’m really impressed by that and it flows very naturally from you, that’s why I thought it was interesting that our new friend Sherry suggested the vision board workshop for the three of us because I think even though you met her not too long ago she already saw that this was something that might resonate with you. Because that was a similar kind of self empowerment exercise and self visualization, to actually put down in pictures and words your thoughts that you wanted to manifest in your future and so I thought that was interesting that Sherry could already see even though you’re friendship is pretty new that this was something that would resonate with you and I feel like you both really enjoyed that. 

(14:20 – 20:04)

Ric: There was one other thing that I wanted to mention because the zoom call crafts club that we started with Sherry and our newest member Maria was part of a conversation recently where the four of us were talking about bringing our energies together to create something for the community, and I thought it was interesting that basically you and Sherry came up with this idea that you could contribute poetry and the three of us, now four of us, with Maria joining and hopefully the group will include Trace, also very soon, who is a great artist, he used to draw with us now and then at the coffee shop. We are talking about as a group creating some sort of greeting cards or post cards that we would design together and then incorporate your poetry and to send these cards to local people who are feeling isolated right now because of the pandemic. We could send them to say senior citizens in retirement communities

Anne: We can also make some for my Kroger where I work

Ric: Mmhmm

Anne: Because I think my Kroger always needs something to brighten their day

Ric: Right

Anne: Whether they’re working at Kroger

Ric: That’s also a great idea that they would be something you could share with your coworkers. Once again Sherry Clink showed her great imagination and great creativity and just her intuition. She has already found a local group who does organize cards of encouragement and things like that for the local senior centers and retirement communities and things like that. So she’s already kind of taken that idea and ran with it and reported back with it. So with Sherry’s help we already have an organization we can work with, and we’re really at the beginning of this, we aren’t really sure how it’s going to go and where it’s going to take us, but I think it’s a great idea because you have written some great poetry and now we’ve started this zoom call crafts club to create art together and stay in touch with friends, to deepen and strengthen those friendships and now to create something together to give back to our community that are feeling isolated because of the pandemic. It’s very – I feel like it’s very uplifting and it’s very positive and I’m glad to be a part of this experience with you because we’ve found a way to take these sad circumstances but create something positive for people in the community with your art and poetry, it’s pretty amazing.

Anne: Thanks!

Ric: So I want to hear some more from you, though, just any more thoughts you’d like to share today.

Anne: Um I think I have everything for now

Ric: Did you have any more poetry that you’d like to read for our listeners while we’re recording? I don’t want to pressure you do read anything if you don’t feel prepared. Just thought I’d make that offer if you wanted to.

Anne: I think I have a perfect poetry to read.

Ric: Go ahead whenever you’re ready.

Anne:

I have the

Right to have a style

I need a 

Voice is my head

I am confident

It has a lyrics

Poetry

Is peaceful

Very

Poetry says

Something

About

Lyrics

As a poem in life

I can change

The very I am beautiful

Every poetry

Has feelings

Every story

About my confidence

Any poetry

Had lyrics it has music in my heart

Ric: Very good, thanks for sharing that

Anne: Thank you

Ric: And thanks everyone for listening, anything else to add?

Anne: Well just one quick short poem

Ric: You wanna read one more, I’d love that.

Anne: Every night as you feel on your voice in my head and right now God is telling you thank you so much for being here in life, thank you God for being here and we all love you, God is rest in peace in your heart.

Ric: That’s fantastic, I didn’t want to talk over the thunder, but listen to it it’s still rumbling

Anne: That thunder is God

Ric: That’s spectacular. Yes it is, He must have known we would be recording today.

The next two episodes of More are going to be a little different.

You might be listening to this podcast because you’re a fan of Starfire’s work, or maybe you’re curious about how to build community in your own life. So in honor of that, the next two episodes are going to be hosted by Anne and Ric (Richard). These two have been designing community in Anne’s neighborhood for a while now.

You’ll learn how they began their process of designing community together. First, by learning about each other, over many conversations about art. Ric shares how he learned about Anne’s creativity and her love of poetry. Then, you’ll hear how they explored places in the city in order to find connections with people who share this interest.

Listen to PART TWO to hear about how they held onto these connections in 2020 pandemic mode.

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FULL TRANSCRIPT

Anne: To me meeting new people is like inspiration to me because meeting new people is inspiration to me because I like talking to people and being with people. 

Katie B: You might be listening to this podcast because you are a fan of Starfire’s work or maybe you’re curious about how to build community in your own life. So in honor of that the next two episodes are going to be hosted by Anne and Ric. These two have been working together to build community in Anne’s neighborhood with a concentration in connecting artists to one another. You’re going to want to hang on and listen to part 2 because that is when ric and anne share the ways that they were able to maintain the connections that they made one year ago in anne’s neighborhood with other artists virtually during this global pandemic. So when you listen to this part one you’ll be introduced to a lot of the people who you’ll hear about again in part two, only in the second part it is going to be a little bit trickier to maintain these connections, and I think you’ll hear a lot of hope in both of these stories. 

(1:09 – 5:41) 

Ric: Okay my name is Richard and I work for Starfire Council in Cincinnati Ohio, I’m a community connector there and I’m here today to interview Anne Gerhart who I’ve been working with since February and today is June 12th, 2019. Anne do you want to say hello and tell us a little something about yourself? 

Anne:  Uh sure, hey everybody I’m from Cincinnati Area, I’m Anne Elizabeth Gerhart, I’m 21, and yeah I think that’s all I got so far. 

Ric: OK,  Anne and I started working together in February after I first met you and your mom for coffee, started talking about your various interests and it seems like creativity is the one thing that flows through. You are an artist a poet and you do lots of different kinds of art. What are some things that you do when you spend time making art? 

Anne: Well I like to paint, I also do canvas painting, sketching, I also draw and I also take pictures of really cool things. 

Ric: Theres a wide variety of different creative outlets that you enjoy. 

Anne: Yes. 

Ric: Different artistic media that you enjoy, you said painting and drawing, and you said photography, see I didn’t even know that one! So our idea was to work together to meet people who shared the same interest as you, try to make some connections in community, to build some new relationships and deepen and strengthen the friendships you already have in your life. And we started out kind of casting about around town to meet other people in the arts and crafts community. Did you want to mention any of the places we went together during that process? 

Anne: Yeah I can do that! We went to the art museum, went to look some art paintings there, we also went to arts shops, we went to indigo hippo the crafty place 

Ric: That’s right! Is that the place near Findlay market? 

Anne: Yes, we also went to Michaels. We got to learn something new and crafty, we went to the downtown library and went to the makerspace and got to make some buttons. Also we also went to luckman’s and talking about art work. 

Ric: I’m glad you mentioned the museum because when we first started out together, to get to know each other, to get more acquainted, to learn more about your interests since it became clear right away that your primary interest is art, we started out at the museum, the beautiful Cincinnati art museum, up in Mt. Adams we had a great convo that day and that feels like a place we might turn to for inspiration from time. But you’re right, from there we went to check out different art stores and we did pop into Michaels, I remember you buying something for your grandmother’s birthday. 

Anne: Yes I made her a cute necklace and I got her some fake flowers. They really don’t have a smell but she really likes it.  

Ric: Yeah that’s right, We found a jewelry making kit there too, it was in their clearance rack too, only a couple bucks! 

Anne: It was really hard to put jewels on it, it was really really hard to put them on 

Ric: MmHmm yea. That’s right 

 (5:41 – 7:29) 

Ric: We set up at Luckman’s as we often do, the coffee shop in your neck of the woods where we made friends with the barista there named Maria, we might even pop in there to say hi on our way home. Ad another guy there named Trace? Hes there fairly often 

Anne: Sometimes if we do go to Luckman’s we always see Ric’s buddy, We always see Simon! 

Ric: Simon’s another customer there, we end up talking to him about music, art and movies it turns out your family takes vacation to the same part of Florida where he visits his family in the summer 

Anne: Yes I remember that, it’s really fun down there, it’s cool. 

Ric: Anyways, We took that jewelry kit that we found real cheap to Luckman’s coffee shop. But you did a really good job at putting that necklace together. 

Anne: She loved it. 

Ric: She loved it? 

Anne: Yes, one time when we went to visit my grandma, she has been telling me my granpa has been telling me how nce it was that I would get my grandma fake flowers that don’t smell 

Ric: I think you also mentioned that we popped into Indigo Hippo, a thrift store downtown 

Anne: Yes, they have really old stuff 

Ric: Old stuff, repurposed stuff 

(7:29 – 9:00) 

Ric: I feel like we really struck gold when we discovered the hobby pop arts and crafts shop right there in your neighborhood where beth betcker is the owner ot the shop and her assistant Megan. They just embraced us right away. They said you come by any time and make art with us 

Anne: And it’s free you can take your art home with you 

Ric: You’re right, you can take the art home with you! 

Anne: For free. One time I made some thing really cool. I have a lot of crafting ideas. I made a dog canvas art. I mad Breezy Woods. Breezy woods is actually a dog in a movie. I got to make that on a canvas. 

Ric: Beth had some great suggestions along the way, and you two hit it off right away and we fouond as we were looking around town to meet people who are interested in arts and crafts, and more importantly  to make some new friends and build some connections in that community to try to work on new projects and goals together to make new friends in that community and then to work on projects together with them and it looks like we might have an opportunity to volunteer on a semi regular basis helping Beth and her assistant Megan at the shop. 

(9:00 – 11:05) 

Anne: I have a few questions for Ric. 

Ric: You have questions for me? 

Anne: Yeah! 

Ric: Oh okay! 

Anne: My main title for the questions is being with Ric has inspired me to do new things and I have two questions for Ric: 

My first question is what is your favorite thing that we did? 

Ric: Wow. Well my favorite thing we did, I’m really tempted to say it’s the day we discovered Beth Becker at hobby pop shop. 

Anne: She’s really cool. 

Ric: She is really cool and that felt like we had spent several weeks looking for her and we finally found her right in your back yard. So that’s a close second. I have to say my favorite thing was the day we were at Luckman coffee shop and you showed me your poems!  

Anne: Yes I’m actually a poet and I write my own poems. 

Ric: I didn’t know We had been working together for weeks and we had been talking about arts and crafts and drawing and painting and making jewelry, you’ve done all these creative things!     I think that you have this creative drive and artistry inside of you, you live to make stuff. It’s very beautiful that you make stuff and you give it away, like the card for your mom.  

Anne: Yes 

Ric: But the day you showed me your poetry that’s my favorite things because I was pleasantly surprised because there was this whole other creative side of you that I didn’t know about. And you had a whole notebook full of your poetry with you that day. 

Anne: Yes um I actually just finished my poems all this week. And I’m actually a songwriter, I write my own songs and I produce it to my piano. 

(11:05 – 12:22) 

Ric: So what do you think about this journey so far? 

Anne: Well um..what I do with Rick is really fun and being inspired by new things 

Ric: So what has it been like for you meeting people? You know like showing up to new places and meeting new people like Beth at the hobby pop? 

Anne: To me meeting new people is like inspiration for me because I love talking to people and being with people 

Ric: That’s great. What do you think looking into the future what are the possibilities that you can imagine for this journey as we move forward and what are the risks and challenges you see? 

Anne: I don’t see any challenges at all but I’m just trying to do my best and meet new people 

Ric: Yeah, I feel that about you too. I think you are a person with a great many gifts. Your perspective on the world is that you don’t even see challenges. You just get out in the world and meet people and make your art and by making your art and sharing with your friends and family you make the world a better place. 

(12:22 – 14:50) 

Anne: I have a last question for Ric 

Ric: I didn’t know you had any questions for me so this is a surprise 

Anne: My last question for Ric is name a time we talked about art. 

Ric: Wow, I would say between feb and jue of 2019 we have been talking about art nonstop. This conversation we are having right now started back in February and we are still talking about art. I guess i If I had to mention a highlight in there I know I already mentioned this, but finding out you were also a poet that was a big day for me and that first day too walking through the museum talking about what we saw there the kinds of art we enjoy, how the different paintings and sculptures and tings resonate with you that was a good day and again up at the hobby pop shop where we finally made some friends there that feels like another part of this conversation about art making and creativity that was a real highlight for me when we discovered them and found a way that not just that we appreciate what we’re doing there but we feel like they are a part of your tribe, like these are your people, they are part of your tribe of creative artsy people after looking for weeks around town. Very fun people to be around, right there in your neighborhood! 

Anne: Yes 

Ric: One of the first things we did together with Beth and Megan at the hobby pop show was paint rocks, do you remember that? 

Anne: Yeah I remember that 

Ric: And that was for a local, not really a fundraising, but They are raising awareness of a young girl who sadly passed away where they put a website and hashtag on the botton of the rock and then you paint it a colorful pattern and then you return it to the wild so someone will find it on a trail or a city sidewalk and when someone finds it they turn it over they will see the website and the hashtag. You remember that? 

Anne: I remember that, Yeah 

Ric: So art is where you find it and for you I think you are one of those people that art is everywhere you look, art is everywhere you go. 

(14:50 – 17:08) 

Anne: I just wanted to add something about art if that’s okay? 

Ric: Absolutely 

Anne: To me, art is like a passion to me because it’s like a gift 

Ric: It is isn’t it? And I really appreciate that about you.You said that a moment ago and you aren’t nervous. And I feel that about you, that this is just something you naturally do. It just flows out of you you don’t have to fake it, or worry about what other people think because you are who you are and your art is what it is and it’s just a natural extension of your personality. 

Anne: Yes. 

Ric: That’s a beautiful thing. 

Anne: Yes! And I was thinking that maybe I could sell my own artwork. I’ve never done that before and I’m very excited to do it, so I can make some money of my own. 

Ric: That would be nice wouldn’t it? 

Anne: Yeah and maybe I can show everybody my artwork! 

Ric: Yeah 

Anne: And if people are listening to this from the Cincinnati area right now if you have any art requests you can always let me know and I can come up with something for everybody who’s in Cincinnati 

Ric: That’s fantastic. Well I’m excited for you in this next chapter of your development as an artist. Many artist never find themselves in a place where they can create art and maybe even make a little money from it. So I do hope that works out for you, that’s exciting. 

Anne: Yeah 

Ric: Did you have anything else you wanted to say before we wrap it up? 

Anne: This is like an ending part if you want to say it with me? 

Ric: Ok sure 

Together: Wake Up USA! 

Anne: Thank you so much for listening 

Never did I imagine that the words: “Carol, you have permission to put Grayson’s disability on the back-burner” would be such a life changer, and not just for Grayson but for me, Briella, Charlie…our entire family, but here we are.  Along the way we (as a family) discovered so much about our own gifts and passions, and because we discovered all these cool things about each other and those around us, we began finding ways to share those gifts not just with each other but in our community.  And we have done some pretty cool things and met some really cool people.  But I won’t lie, it’s a process and it did not happen overnight. 

It was not easy at all, taking that first step towards meeting new people in our community, but for us as a family it was vital in making a good life for Grayson.  It is fun to think about the fact that when I first met Tim (my mentor/colleague, who introduced me to the concept of building community), I pushed back and more or less tried to call BS. But well, if you haven’t caught it yet, I lost that pushback and here I am - an irrationally passionate about all things family, community connections, and John McKnight-related, kinda person. 

One of the gifts I discovered along the way was my ability to see different perspectives, and because I am a people person I am always up for good conversation!  So, as I shift gears here, I want to share a quote from a mother and Starfire Board member, said during a conversation we were having around the vision of building the most inclusive world possible. This quote really inspired this moment of reflection for me…

“It may not happen worldwide in your lifetime Carol but it’s certainly happening now in Hamilton, and y’all did that.” 

~Kathleen Cail

This ah-ha came on top of the last two “Wednesday Walks” in my neighborhood, where I had been sharing bits and pieces of my work and family story with Byran, a fellow neighbor.  If you know me, you know that I could talk about family, community, and connections all day long… it’s that irrational passion I mentioned. 

Anyway, it got me thinking, that first step towards something a little more…a brave step towards meeting a neighbor or someone new in your community can be hard…scary in fact, and sometimes people just aren’t sure where to begin.  Sometimes, people don’t recognize that what they are doing actually is building a more inclusive community, helping others lead a good life, and helping them have a sense of belonging. 

I was posed with the question a few weeks ago, “What can I do, Carol, as a citizen?” The short answer, and for me the most important is: get to know your neighbors, get to know people in your community.  The long answer is a fun little list of ideas with some amazing people/stories behind them, this list is a tip of my hat to those amazing people and are just some fun things to get you thinking about what you (and your family) can do to start meeting new people in your neighborhood/community.

Here is that list!

·       Walk around your neighborhood…smile, nod, wave, say hello, or simply walk…become a regular

·       Visit the local shops- even window shopping can lead to meeting new people!

·       Walk around the “town square” and notice the history.  Does your town have flood markers? Time capsule? Any cool legends?

·       Compliment someone on their yard, their flowers, yard decorations

·       Share sidewalk chalk with friends, neighbors, people who pass by

·       Share your sidewalk chalk art with others- decorate random squares around your neighborhood

·       Connect with the local neighborhood/community volunteer group if your community has one- find and connect with people who are working to make their community a better place

·       Organize something fun…front yard splash party, bubble party, porch concerts, truck concerts

·       Learn a new skill at the park, invite others to join

·       Paint rocks with someone and hide them around town

·       Bring up your neighbor’s trash cans…this can be so helpful sometimes

·       Hold a monthly bonfire in your driveway…invite neighbors

·       Make a talking piece in your yard…a fairy garden, vegetable garden in the front, wildflowers- conversations starters lead to great things. 

·       Gather neighbors and start a community garden

·       Hold a monthly potluck

·       Share vegetables, goodies, things like that

·       Pick up the trash around your street, block, or go even bigger with the neighborhood- ask people to join you

·       Find ways to share your gifts, art, music, fixing things, technology

·       Connect with others who share your passion: birds, games, art, history, plants…community is not just limited to physical space

·       Learn something new from someone you know

·       Teach someone you know something new

·        Have virtual coffee- with a friend, an acquaintance, someone you just met

·        Listen to a local storyteller/musician

·       Tell a story to your family, a friend, or over zoom with a group of friends

·        Take a walk with someone

·       Share flowers/plants

·       ___________________your idea here

First steps are scary, but if I have learned anything over the last three years, it is that we are better together.  COVID-19 has certainly thrown us all for a loop, but it has not changed the fact that we need one another. 

While everything in our world is telling us to lean out rather than lean in, I challenge each of you to think about ways you can lean in, maybe meet someone new, or discover your gift, maybe it’s simply dreaming about what you and your family will do when we reemerge from this, or maybe, just maybe something inspired you from this list. 

Sure, maybe movie night in the park may not be something we can safely do right now, but we certainly can plan for when it is safe.  Maybe potlucks are out but, what you could do is swap recipes with neighbors or try new dishes with your family for when potlucks are back in. 

I dream of a world that is inclusive, a world where everyone is seen for their gifts and abilities not labels and what is “wrong.”  I truly believe we are on the right track, each day I meet new people who share this vision with me, and what I have noticed more and more is it’s not just families that have loved ones with disabilities working to build connections, its people all over, from all backgrounds working to build connections and grow a good life, keep doing this friends and keep doing great things!

It’s a narrative that often gets repeated to parents of young children with disabilities: the more services the better. But John and Connie found a different way early on with their son Mark. Their family’s dream was bigger. The vision they have for an ordinary life really gets to the heart of why this podcast started - to offer out ideas for families and people with disabilities to go after more in life than the expected route of disability services and segregated activities.

As founders of the Plan Institute in Rhode Island 15 years ago, the Susa family connected with Starfire to learn how to launch community projects. They said that this way of bringing people together, over a shared goal like a community garden, generates a certain magic - almost instantly.

If you are someone who wants to think seriously about how you and your loved ones spend your time, how to connect more deeply in community, and ways to make longterm relationships a reality, this episode is for you.

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FULL TRANSCRIPT:

CONNIE: - I have heard speakers talk about this concept as a way of healing the world and as we’re in the midst of the COVID19 virus outbreak right now, I think the world could use a lot of healing, not only physically but also in terms of relationships. We have a new neighbor who shares that passion with us, and it has been such a joy to get to know one another, to have a real give and take. I can see how if this were multiplied throughout communities, and states and nations, the world would be a beautiful place.

KATIE: Beautiful.

JOHN - I’m John Susa. I think what moves me for a lot of this work is almost a therapeutic plan for me. I grew up very very isolated and I had very few interactions with anybody besides my family. And most people would have described me as being very introverted. When people asked me when you were a child, what did you want to be when you grew up? My answer was always the same. I wanted to be a long distance truck driver. So I could sit in that cab and not have any human interaction for days. And if left to myself that’s probably what would have happened. But instead I learned that if I pushed myself a little bit and started interacting with people and meeting people then I could change that desire to be a loner. And so I think the reason I’m so involved in all of this stuff is still mostly for myself to avoid falling back into be a loner. So I made pretty much a conscious decision that I was just going to change my behavior first. And of course after I changed my behavior for a while my attitude started to change.

Fast forwarding then to when you and Connie met, and you had children and you were - down the road, you know, deciding how to engage as a family in the community, what were some of the things that you had to consider first to be connected?

JOHN - I think for me the recognition that Mark developmentally was experiencing life differently than others made me realize it was going to be very helpful if I became more engaged in the disability advocacy world. I was kind of driven by two different quotes that were in my head that I learned while I was in the military. And they’re very a-typical but they’re very powerful. One is from Johann Goethe a German philosopher and he said, “Dream no small dreams for they have power insufficient to change the hearts of men.”

That’s been something that I’ve always come to recognize as a very powerful piece of instruction and advice. And I saw that there were people who were encouraging us in many ways to dream small, to be satisfied with what Mark is able to do, focus in on his disabilities, spend your time searching out services. In many ways that was dreaming small.

There were occasionally people who would say, “No, no, no don’t do that. Dream big. Dream like Mark’s future is limitless. Dream like if you just provide him with all the opportunities that life has to offer, you will be amazed at how much he is going to accomplish.” And that is what I took from Goethe, dream big. And we have ever since. And that really has kind of put us into contact with a lot of other big dreamers. It’s those big dreamers that really have changed the world works for people with disabilities.

KATIE - Beautiful.

MARK - Excellent.

CONNIE: - For me in terms of community building, I think one of the greatest advances has been our church. Mark turned three at the end of December.

MARK - Right.

CONNIE: And three-year-olds were supposed to begin in what most people would call “Junior Sunday School.” When Mark was three, we were still carrying him - cradling him in our arms. Did you know when you were three years old you couldn’t sit up by yourself?

MARK - No way, really?

CONNIE: Truly. Mark just kept attending our Sunday school classes with us and about two, three weeks into that sequence one of our friend’s who taught the three year old class, the Sunbeam class, came to us in the hallway and said, “Why hasn’t Mark been in my class?” And I said, “Edith - look.” As if seeing where Mark was at that moment meant everything. And she said, “Yes, but look at my role.” And Mark’s name was there, without x’s in the attendance boxes.

And she said, “We really need him in our class.”

And I said, “Edith he can’t even sit up independently.” She said, “Well we could get a highchair and we could put pillows all around it so that he can sit up.” And I said, “We’re not even sure that he can understand what you’re teaching the other kids.” And she said, “That doesn’t matter.”

She said, “The reason I need Mark in my class is because all the other kids have so much to learn from him.”

MARK - Really.

CONNIE: And while we had been working seriously on stimulations and Mark had gone through early intervention and we learned about you know sensory stuff and what have you. We were doing that once a week, in a group and the rest of the time at home. But what Edith had said really started Mark and us on the path to community. Mark now…well, tell Katie what you do at church.

MARK - A lot.

CONNIE: - Some things that you’re responsible for?

MARK - I’m secretary.

CONNIE: - Secretary for what?

MARK - For attendance.

CONNIE: - Yup, and you set up appointments for interviews.

MARK - Set up appointments for interviews.

CONNIE: - We were amazed, Mark was enfolded in the arms of these people who understood all about community because that fits the teachings that we have as Christians.

Going back to what Edith had said to you that you know, diversity and having different types of learning in a classroom is really really really important and once you accepted that invitation, what unfolded in that first year?

JOHN - What I remember is that it reinforced something that I came to realize, everybody became comfortable and it was now normal and accepted that Mark would be part of that congregation. Once people got to the point where they were comfortable because of exposure and experience they relaxed and they accepted Mark for who he was. And they didn’t feel the need to treat him any differently than they would any other child. It reminds me of another one of my kind of guiding principles and this comes from a guy, Rudolf Steiner, talking about early childhood. Rudolf Steiner is the founder of the Waldorf educational system. Are you familiar with that?

KATIE - Yes.

JOHN - He said that, “There is nothing more therapeutic than normalcy.”

That was a piece of advice that was given to us by a good friend, developmental pediatrician, when Mark was finally identified as having all these developmental challenges. The meeting at the end of the two-day evaluation process was nothing but a group of people who were very pessimistic about Mark. “He’s not going to walk. He’s not going to talk. He’s probably not going to be aware of you. He’s certainly not going to hear.”

A whole bunch of things, they all at the end say “Well, good luck, take him home and love him.” That was their advice, which is good advice but inadequate.

When they all left, their boss who was sitting at the back of the room observing asked us to go into his office because Connie was bawling. Sig closes the door and the first thing he says is, “Don’t believe a word of what those people said to you.” And I said, “Sig if you say that, why didn’t you stop them before they started?”

And he said, “You know all those people in that room were doing or could do is describe Mark now, as they see him. They could not possibly describe Mark in the future. I believe if you believe them, that future will happen. If you don’t believe and you adopt the approach that the best thing to do is to have Mark experience as much normalcy as possible he will become a different person. He will become more like the ‘normal kids’ whatever that may be. Every person will develop depending on how much they’re exposed to.”

So he said, “I’m not going to let them label him because that will result in other people reading the report and it will only help them treat him in a stereotypical way based on his label. I’m just going to say he’s developmentally delayed.”

And his advice was, “Take him home and love him but then help him have every normal experience as other children.” And that kind of guided our thinking really from then on.

KATIE - And you know, dreaming big in this instance is to dream ordinary, to dream normal.

JOHN - Exactly. Yeah.

KATIE - And sometimes ordinary is the biggest gift anyone can have.

JOHN - Right, right. It’s kind of counterintuitive because in the world of disabilities a lot of times people think that dreaming big means getting more services, the more the better, the more services the better. Steiner said think seriously about substituting every hour of normalcy with an hour of service because that hour of service is removing that person from normalcy. So it’s almost in the disability world it’s almost a flipping of thinking that that has to happen.

CONNIE: - Be concerned if you were just going to services.

JOHN - Be big in your thinking by vying for normalcy.

KATIE - Yes, so even in services are... they’re not normal. It’s interesting.

JOHN - They’re not normal.

CONNIE: - What’s more important is that Mark participated not only in that class but every subsequent class. And when Mark was eleven years old we took our school district to a due process hearing because they had adamantly fought us for two years in bringing Mark back into district from a segregated day placement that was anything but normal, because they were sure that Mark would not act appropriately in a classroom setting. They were sure that Mark would be a disruption to other students, they were sure that he might even be self injurious or injury other people,  because they were thinking in terms of stereotypes not in terms of who Mark is as an individual. And do you remember Jennifer Coats, Mark?

MARK – Yeah. The one with the power.

CONNIE: - She came to your hearing.

MARK - Right.

CONNIE: - And she told everybody just how you act in a classroom setting. That you raised your hand just like that, that you participated appropriately in singing time, that you sat with your class and no additional extra support. That you sang the songs that you answered questions, you gave talks.

MARK - Right. Yes I did.

KATIE - So it sounds like Jennifer had another piece of Mark and your family’s story along this journey to dream big, to live an ordinary life? She made an impact during that hearing.

I want to see if we can dip our toes briefly in the water of the day placement that you mentioned, that Mark was in, and how that was anything but normal. Can you explain how abnormal it was or what about it made it not ordinary?

CONNIE: - Sure, the very fact that there were multiple kids with multiple disabilities just ate up so much of the instruction time. What else do you remember about it?

JOHN - Everybody in Mark’s class was just like Mark. Six little kids, wheelchairs. So the biggest thing I believe happened when he left there and went into a regular classroom is that for the first time he started culturally and socially experiencing life as every other eleven, or twelve or fifteen year old does.

KATIE - You agree with that, Mark?

MARK - Yes, excellent.

KATIE - Yeah and I think that’s a good segway to the phrase ‘a good life’ that is something you hear a lot from Al Etmanski and Vickie Cammack. It’s a big part of the PLAN institute model and you all have been involved with PLAN at Rhode Island for quite some time.

So what ways has it helped?

CONNIE: - John first heard Al speak, he recognized the wisdom in their model that we always acknowledge how deeply we depend on the work. When we brought PLAN (Personal Lifetime Advocacy Network) to Rhode Island 15 years ago we knew that we were standing on the shoulders of giants. The two things that we have focused on in trying to replicate their model is we help parents put all their ducks in a row, plan for the time that they are no longer going to be there or able to enrich the lives of their sons and daughters out of the love and the family history, the precious relationships. The much more important part of what they did in Canada and what we did in Rhode Island is to build a personal support network around the member. The family joins on behalf of their son, daughter, brother, sister and they engage with a facilitator to build and maintain that support network so that it’s not just every individual having a relationship with a person at the center of the circle but it is all those people getting to know one another, to recognize one another’s strengths, to trust one another. Between all those group gatherings individuals will do things with the members at the center, with our loved ones. And as parents we try to do that early enough so that we can fill in the important parts of the history.

So the support network is really there to build a circle of support around a person, and yet also it’s not just about the person in the center it’s about everyone in the network joining together, being in relationships together, and in that way being in a community. Where are you now with the support network?

CONNIE: - Right. Mark has had a personal support network for the entire time that PLAN has been in existence in Rhode Island. It really does take some time for relationships to mature that if we had to step off the Earth the next week, this would go on.

MARK - Right.

CONNIE: - And that it would provide Mark with people that he could depend on, people who were real friends, who had proved that over time.

MARK - Right.

CONNIE: - People who enjoy spending time with him. And we feel secure.

In one of the questions that PLAN Institute seems to start with is what would happen to my loved one after I pass on, if I’m not around, if we’re not there to help what will happen? And so starting from a young age it sounds like you guys have done a lot of work to build that support network so that in a time of disaster or otherwise that there is somebody there for Mark?

JOHN - Right. When PLAN in Canada was first put together it was even before Al Etmanski, it was just a group of parents and they hired Al. They originally thought that they were preparing for their demise, the focus was on what’s going to happen? What they quickly discovered was that yes they were doing that but they were also starting to develop a stronger sense of security and the feeling that their son or daughter was safe. There were some very positive benefits to the parents while they were still alive. And they figured it out that it was the existence of this network that provided that sense of security. And not only the sense of it but the actual security.

KATIE - I love how you put that, that’s very clearly stated for me and I think it’s actually it starts as soon as you begin to community build: the benefits, the magic, the parts of it that are really just supportive feeling begin right away. And every parent needs that and we need to raise our children as a village.

You all as a family have taken the brave step being able to say well even though some experts are telling us otherwise we’re going to not believe that and in doing that we are going start this support network early and we’re going to build and the more people who have joined in along the way it sounds like the more momentum has build towards this?

Tell me about your family’s leadership in the community as it relates to your street, and how your support network, Mark, how they were involved in that process?

JOHN - So as we kind of navigate our life with Mark, I’m always looking for things that are in the way of him achieving greater independence. So this little project about looking at Warwick Avenue, Mark and his brother live about two and a half, three miles apart, they both require a wheelchair in Mark’s case or a scooter in Frank’s case. And so when Frank moved back here to Rhode Island we thought, “Wow wouldn’t it be nice if these two guys could get together once in a while without Mom and Dad having to be the go between.”

We started looking at this road and we recognized very quickly that this road was a problem. I’ve known that this road was a problem probably for at least fifteen years now, but I’ve not had a real strong reason for us to say, “Let’s do something about it.” So we naturally thought that this is going to be something that is much more powerful if we have a group involved. We had a group, we had Mark’s network, they all know him, they’re comfortable with him. So we posed the idea, the project, people thought this is great. And the fact is that there is appropriated money from the Department of Housing and Urban Development every year for infrastructure maintenance. But the fact is also is that many states use that money for something else besides not worrying about wheelchair accessibility.

So our complaint kind of brought this into the public eye and I’m pretty confident that we will be able to see some change and some action as we kind of work through the process. But it is also what ever you want to call it, karma, good luck whatever, that here we have our network and one of the powerful things about a network is the fact every member of that network has other connections with other people and within our little group we were able to identify somebody else who is not part of Mark’s network but is only peripherally connected, kind of, who is going to be very helpful in resolving. And you never know who you may know until you start talking and working and interacting in community. Every network is a little community and every little community has a lot more resources than we certainly had by ourselves.

Absolutely and maybe you can share how some of the other families you know in Rhode Island who have similar networks of support like you all do around Mark, how they’ve utilized their networks of support to do other projects in their communities with Starfire's facilitation support. What are a few of those other projects that have happened or sprung out of this collaboration?

JOHN - So in about a month or so another network is going to do a project that is to create a mosaic welcome sign to this little town’s community garden. It’s prompted by a family who have a son who has very significant disabilities but who is a very very talented artist who is really good at sketching and painting vegetables.

So they’re going to take his work and they’re going to create a mosaic welcome sign. This is a family I’ve known for quite a while, also been part of PLAN for a while, and they have dramatically really been able to bring their son like we did out of a special school into the real world and Sid has really blossomed as a result of that real world life experience.

Why do you think it’s important for families to lead efforts toward building community? And how do you think families are helping other people in the neighborhoods see the light of community building, the magic of community building?

CONNIE: - We’ve been told for years on end that certain federal programs are underfunded and that there may come a time that those things are no longer available or that their support and services get shrunken and Mark loves people, he’s a very social person.

MARK - I do.

CONNIE: - You do and you contribute in a lot of ways.

MARK - Right.

CONNIE: - And we’re very proud of that.

MARK - Right.

CONNIE: - So just in terms of politics alone it’s important that we give our sons and daughters opportunities to show that they can contribute to society.

JOHN - From our own experience and from the experience of a lot of people we know that the amount of community, acceptance and inclusion that people with disabilities experience is really very much influenced by how much their family is integrated and included in their community. Our experience was that after Mark started going to special private school we spent more and more and more time at that school helping them with fundraising, helping them with all kinds of stuff and we spent less and less time in our community.

We often meet family with children with disabilities and very quickly they’ll say, “Oh, but we don’t know anybody. We’re not engaged in our community.” And without spending a lot of time we recently were able to recognize that that was because they were spending their time in a different world than their community. So we really really strongly encourage people to become more engaged and more involved. One of the ways is get engaged in a community project and all of a sudden you know a bunch of people, not all of those people are going to become part of their son’s or daughter’s network but some will. And that’s because all of a sudden they know people who have common interests, there are all kinds of things that happen when you start doing things together. These projects are just ways people becoming engaged in their community, as a family, and then as time goes on for that family to be unique and having people have a relationship with that son or daughter who has a disability.

Absolutely. And maybe we’ll end with a quote here I think that is related to everything you just said. It's by Al Etmanski he says, “People are naturally ingenious when faced with adversity.” What ways do you think you all have managed to be ingenious?

CONNIE: - With the COVID19 crisis, Mark’s facilitator of Mark’s support network is putting out requests with two things. One to ensure them that Mark is no more susceptible to this virus than anyone else in the community is. More importantly, because Mark has benefited so much from his contact with all the members of his network, she is going to ask them to engage with him regularly remotely as long as they cannot engage with him personally. He reads and he can enjoy texts and answer emails and appreciates post cards and greeting cards and phone calls.

MARK - Right.

CONNIE: - That’s an adaptation that we’re making right now.

JOHN - We’ve learned that we really have to remain flexible. We have to depend on other people’s creativity and let them interact with Mark in their way. In the beginning when he was younger people would always ask us, “What does Mark like to do?” And a long time ago we basically came up with the same answer, “Well I don’t know, ask him.” Not only ask him but invite him. Mark surprises everybody with his ability to express his enthusiasm for things.

KATIE - I love how you turned a question into a way to mobilize community to be more involved and be more inclusive. It’s wonderful to meet and hear your story.

JOHN: As parents we’ve benefited from such wonderful and powerful messaged from guys like Tim (Vogt) and Al Etmanski and David Wehterow and John O’Brien. There’s a million of these messages that we’ve been lucky enough to try and hear and try and incorporate into what we’re trying to do for Mark. That’s what it’s all about we’re doing it for our family first - and hope that other families will see what we’ve done and will say, “Hey if those guys can do it so can we.” That’s the power of this movement.

KATIE: It’s actually moving, it’s doing something. That’s the exciting part of it. Thanks for being movers, so great to meet you.

MARK: Good-bye.

GET THE PODCAST

Remember when neighborhoods were connected? Looking for ideas to connect when it's safe to again? Listen to Tasha and Safi's story of how their neighborhood completely changed over the course of 3 hours.

Tasha and Safi are both doctors, and like so many families juggling careers and children, time is a precious commodity. When they started to build community on their block by planning a neighborhood carnival, they were at first skeptical: “the “why” killed me…” Safi said. But they soon discovered many neighbors also wanted to live in a connected neighborhood, and a few older residents shared memories of how this is the way things used to be. Their story shows how projects help us come back to the connected neighborhoods of the past but in a new, more inclusive way…

We’re all feeling the nostalgia for the way things used to be, before there was a pandemic to worry about. Maybe Tasha and Safi’s story will help you the listener imagine what you might do to connect in your neighborhood once we aren’t living in a climate of social distancing, and spark for you some plans to connect more with your neighbors when it’s safe to again.

And if you’re interested in joining families to build community in your own life, head over to our family page and sign up to learn more!

www.starfirecincy.org/families

FULL TRANSCRIPT:

TASHA: We did a project that involved our entire neighborhood in a carnival event. So our daughter Soraya, who is seven, has some issues when it comes to large crowds. She gets kind of over stimulated. One of the things that our kids love to do is go to the school carnival except for Soraya she has a hard time going to the school carnival. It’s one of the things that she misses out on because of the large crowds. This gave us the idea of doing something in our neighborhood that’s something that she would enjoy as well. And so what the idea was was trying to pick a date that we could always remember to kind of be able to do as an annual event. We decided to use the last day of school for our event. We tried to get each one of our neighbors involved by having kind of like a station or an event or a game on their front yard of their house. And so this was an outdoor event that involved inflatables, we had a beer truck, we had appetizers, we had food. And so pretty much every house in our neighborhood had a responsibility to have something in the front of the yard and those that couldn’t participate in that way we found other ways for them to participate. Whether it was a bag of ice, water bottles, and that was kind of the event. 

KATIE: Yeah so I love how you created a set of rules for this event that kind of you would have stations, you would have different activities going on at different people’s houses.

TASHA: And everybody could go wherever and can disperse. The one thing that we did do is have a game that required you to go to every station so that way we knew that people would have some motivation to leave one spot. So that kind of helped as far as mixing people up.

KATIE: So just describe the space to me, just describe the layout of what this all looked like. 

TASHA: Sure. We have.. We live in a cul de sac. The reason we wanted to have everyone, every house in the entire cul de sac involved but there was some limitations and some challenges that we ran into. Those being people that had to come in and out of work. And then we had one family that was actually moving and moving out of the country and they were moving that same week. So we had to kind of make some changes from the original plan of trying to involve everybody so really instead it was a span of eight houses that had an event and then there were still some empty houses but that was purposeful so that way people could kind of come and go without feeling stressed out like “Oh my gosh, they’re having a neighborhood carnival and we can’t get through.”

KATIE: So not everybody participated on the street and not everybody came?

TASHA: Correct, however really the only people who didn’t come were the people that were moving. We had over a hundred people. 

KATIE: Wow. That is a big.. That sounds like Halloween in May.

TASHA: Yes. 

KATIE: Bigger than Halloween. 

TASHA: It actually was bigger than Halloween. Halloween is also big in our neighborhood and it was way bigger than we expected. 

KATIE: Yeah. It reminds me a little bit of this idea that Priya Parker has. I’m not sure if you’re familiar with her book The Art of Gathering? 

TASHA: No. 

KATIE: This being gathering as a way to connect people so not just gathering as a way to eat dinner and then leave and nobody really has meaningful conversations, but that it’s a space where as a host/hostess you’re extremely intentional about how people interact. One thing that she says is every gathering is an opportunity to create a temporary alternative world for those who enter it. So one of the ways to do that is by creating these rules and it sounds like having each house sort of host a different thing. These are all kinds of rules that are different from the norm of society that we live in, right? So you guys, did you feel like you kind of did that? Created this alternative space for three hours in your neighborhood?

TASHA: I’m not.. I mean I’m not just saying this because I’m talking to you.

I cannot explain to you in words what it felt like. I totally felt that way, I feel like I even look at my neighborhood differently now after the fact, but while I was in it totally felt like a different dimension and just watching people interact that I’ve never seen interact; meeting neighbors that I never knew I had. It definitely felt like a safe place where for whatever reason if I saw that same neighbor walking their dog I wouldn’t sit and chat with them but in this space it felt different. You could go up to anybody and everybody, and everybody was talking with one another. So I definitely, like when you said that it gave me chills because I can definitely relate to that feeling. That’s what it felt like. 

KATIE: Yeah, you know, one of the questions we get a lot is how to invite people in and create that space where people feel energized and motivated to kind of connect and be more than just like neighbors who pass each other in the, on the street and just wave when they’re walking their dog. It sounds like you got everybody engaged and interested in some ways, can you describe like what that looked like to create that space and energize people in this way? 

TASHA: As far as what I think got people to feel safe, is that what you mean?

KATIE: Yeah so I mean the other part of, yeah, the other part of this is when Priya Parker talks about a lot a lot, a large majority of the gathering happens before the gathering even happens, right? So it’s actually about preparing people for the gathering. So I guess that’s the question, is how did you prepare people for this gathering. Yeah.

TASHA: So I think that we started having monthly meetings in January. And I think the first meeting is kind of that long shot like, “Can we really make this happen?” The fact that there were people who showed up to the meeting was really exciting. Each time there was almost a scramble of people, some that were consistent, some that were not, and each time the group of people just got more comfortable with one another. And it was actually a lot of fun watching the relationships change per meeting, even though we were planning for a separate event it was by the last meeting that I told Safi, “You know it’s almost like even if there’s massive downpour and this event doesn’t happen or can’t happen like I already feel like things are building and things are changing and that in itself felt differently in the relationships.”

Like I had to get people’s cell phone numbers that I didn’t have just to communicate about when to meet, whose meeting what. And then we just became invested together to make things happen and then I thought I would be the only one just worried about the weather like, “OH my gosh this is going to be..” like our project and you know and I’m kind of the one who started this idea so you know I feel so much pressure but everybody felt that. Like, “Oh we’ve got to make sure the rain stays away what’s our plan, I just felt like everyone felt equally invested because they all put something into it. And that in itself felt differently than I would have imagined from the first meeting and I think that that build up is really what created the space not only for, I don’t want to say core, but kind of the core group. And each one of those cores knew like other families that I didn’t know. So they were sharing information with people that I never talked to, but because they had shared that and other people knew about it, it made them invested. And other people were like, “Oh we were praying for you because we know we got your email and you’ve been working so hard on it.” And it’s like I don’t even know who these people are but that’s awesome.

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KATIE: Yeah so it makes me wonder, can you describe what your neighborhood was like, what were your connections like in your neighborhood before this process started?

TASHA: So we’ve been in this neighborhood for four years this summer. I think that there is. I don’t want to say, a divide maybe it kind of feels that way for those that have children and those that don’t and have older children. So I feel like the part of the neighborhood that I’m connected to is the people that have young children because we see each other at the bus stops, we see each other after school, we can relate at school events, we see each other we say hi to each other, you know, at school events or if our kids are riding bikes outside. I think with the other families that have older children and that are retired we don’t really get a chance to interact with them and maybe the only time that I would is when we’re trick-or-treating and the only time we have is when we go around and happen to see people. But then it’s like you trick-or-treat and you might say hi, it doesn’t really allow for a conversation that is meaningful that can kind of carry over so I really wouldn’t know anybody if they didn’t have a school age child. 

KATIE: So when you went to people in your neighborhood who you might not have typically talked to in the past, how did you come to them? What was your purpose, I guess? What did you tell them your purpose was?

TASHA: Well.. And our purpose kind of shifted. So the one thing that kind of took a life of its own in thinking about different ideas for different stations it came up that one of our neighbors who is in the classification of children that are older, children who have moved out of the house was recently diagnosed with ALS. And so one of the neighbors that was involved and kind of heavily through the first family meeting, she’s close with that family I didn’t even know this family's name and she said, “You know so and so was just diagnosed with ALS, can we do something for ALS at this carnival? Maybe we’ll raffle off prizes and all the money can go to the local ALS chapter.” And I’m like, “Yes, that sounds great, let’s go with it.” And what had happened was it became about how to get my own kids involved in the carnival, my daughter who loves raffle prizes really wanted to be the one to collect either donated items or sell the raffles. So her and her best friend went around and Safi went along with them. And I really think that was a pivotal point in this carnival because it made them stop at every house, have a conversation about a neighbor that we all.. I mean I care about him but I’ve never met him up until the carnival which is kind of crazy. But the fact that we were all coming around for him, even though I had never met him, and explaining that to our kids and going house to house, some of these neighbors really know this person really well. And that meant that they were really warm to us and each house was not like, “Here’s five dollars.” Each house was like, “Come in and let’s talk, we want to get to know you guys.” And Safi actually went along for that, and wanted to know more about that. But I think that really connected the younger families from the older families. 

KATIE: That’s amazing and I think going into it maybe looking at it like we’re going to do something fun we’re going to do a carnival and then unearthing this way to support your neighbors beyond something just that would be great and fun is a really critical piece of community, right? Because community isn’t all fun and games all the time. There is a lot of life in the community, so you were kind of confronted with a real life issue and you guys were able to incorporate that, that’s so beautiful. Yeah, Safi what was that like going door to door? Did you.. When you were invited into people’s houses did you stay long, were you kind of polite like, “I got to go” or how did those interactions go?

SAFI: Well, in like what is typical in our life there is an actual time limit that needed to be adhered to because we had one of the girls, her best friend had flute practice that she had to get to but we were like polite but it was actually fairly amazing because as we were going from door to door like a lot of these people I see them, I wave to them but it’s not like I actually have an established relationships with them. It was wonderful to have them come in. Like one of the neighbors was fostering some kittens and our daughter absolutely loves kittens. And she took me to the back with the kids. And oh my gosh they had this amazing backyard, she’s telling me about her grandkids, and like you and your wife thank you guys for doing this, this is really great, please come back at some point we’d love to have a glass of wine with you guys on our back porch. I mean they have an incredible back porch but it was like one of those things were you don’t know them but it was pretty awesome to see them not just taking care of the raffle ticket money it was more of “hey I’m going to be okay with investing in you a little bit” and I think that’s pretty cool. 

KATIE: Yeah, I mean it sounds like people were sort of waiting for that almost. Not waiting but the were just so ready for somebody to knock on their door and be…

SAFI: So I think a lot of the older couples, like the ones who have kids, they used to do all kinds of stuff like this in this neighborhood. Like they used to have these events, every October they have Oktoberfest and they’d have all kinds of stuff but as the kids grew up they kind of stopped doing it.

I think that in some ways this is rekindling some really good camaraderie that they had previously. It’s not like the neighbors didn’t like each other but it was more like they didn’t want to invest anymore because the kids are grown.

Like you end up doing a lot of investment when you’re kids are small because you know that’s their friends, that’s their good buddies, that’s their classmates or whatever. But like I think it’s great that it actually involved both the older and the younger couples in order to kind of come together for, not just for our neighbor who has ASL but I think people in general were waiting for an opportunity to come together not just a micro community. TASHA: That was a reoccurring thing that came up when I’d walk around and meet people that I hadn’t met, they’d say, “we used to do things like this, thanks for making this happen again. We used to do things like this and we want to do it again, thank you so much.” So that was actually a reoccurring statement that happened from a lot of people who I had just met that were retired and had older children. 

KATIE: Yeah, it just makes me think that there’s some gap that happened, you know, in between this generation of maybe there was activities that you could do in the community there was some gap that happened, in the 90’s were everybody just kind of went inside and started turning more inward toward your family and all of the things you said. You know one of the little girl that you went with had a practice she had to go to. Our schedules are really full and so making the time for this is possible but it’s a little bit maybe even more challenging than it was back when these neighbors, you said, were doing it. So I think in that way it’s great you're rekindling something and you’re also reinventing what that is and how it can happen. Were there any surprises that happened throughout this? Did anything come up that either was a kind of a roadblock or something that just really took you by surprise?

TASHA: I would say how much the ALS fundraiser took a life of its own. It really became almost a focus, a big part of it, which was almost, I mean it was awesome it was something that we didn’t foresee. I would say that, I would say the weather. We had a rain date that we set but then actually putting that into place and kind of cancelling things to redo them on another day was a surprise on how hard that was going to be. Then when we thought the weather had been clear enough and out of nowhere, we couldn’t plan for this, it was just complete downpour. And the forecast had said clearly for a couple hours and I was like, “ok we didn’t plan for this.” And all the food got destroyed because it wasn’t under a tent but what was really cool about that it was at least ten to twelve minutes of awful awful downpour and then everybody stayed. And that was really amazing, there was no food, it was all destroyed and people still stayed. 

SAFI: And like and during that, during the downpour it actually forces you to hang out with people who maybe you don’t normally do because there really wasn’t a choice. It was either that or absolutely get soaked to the bone. I mean it was like absolutely torrential rain.

TASHA: Because we only had a couple tents for certain kinds of events. So I think each time Safi and I were surprised that people were actually invested.

I mean I kept saying that the entire time like, “I cannot believe people are actually helping out and wanting to help out.”

KATIE: I love this idea that the neighborhood stuck around a torrential downpour. You never know when those are going to end, you know, you don’t know okay this is going to last fifteen minutes and so people hang around. What was it that… I want to kind of unearth what was inside of you that was being surprised, what was your expectation I guess or what were the experiences that you had had leading up to that that had caused you to be so surprised that people would be invested in the way that they were. 

TASHA: One being we never had anything like this in our neighborhood. And I guess we’ve tried to do some social events with the couples that we are friends with that we try to do a progressive but even when we tried to do that a second year, like nobody really wanted to step up, nobody wanted to do it. And that was like something that was pretty easy. It was like every house had an appetizer that’s literally it. 

KATIE: And you go from house to house?

TASHA: Yeah.

KATIE: And everybody kind of hosts their own food and so a second year of that was not happening?

TASHA: It didn’t even happen. 

KATIE: Just knowing, yeah…

TASHA: There was another family that has a Christmas party every year and it’s kind of like super fun, we all go, but then last year none of the other neighbors went except Safi and I. And we couldn’t figure out why. I mean it’s just a party but so between those few experiences that we’ve had we were kind of like this is going to fizzle out. Like they might say they’re excited from the first meeting but then I just don’t see people like maintaining this like motivation to continue and that’s what was shocking.

What also gives me hope though was how excited people were during the event, after the event was over there were still people hanging out and even now there are still emails going back and forth with people who I don’t typically talk to, talking about the event. And how they want to do it next year and what we’ll do differently and let’s brainstorm for how we’re going to do this next year.

Oh the other surprising things, sorry I’m jumping back, this was really challenging for us everybody really wanted to know where the money came from. And I don’t know if Tim told you that for this event we were actually trying not to mention Starfire. We didn’t want any of the focus; we didn’t want any publicity around Starfire at this point. And that was actually challenging and I think that some of that has to do with there was some people that were spectacle like, “where did you get this community grant that would give, you know, kind of like an affluent area or neighborhood money to do something like that?” And so everybody wanted to know what the catch was, like what is the catch in this? That was also challenging, like literally up until the day of.. On set up day.

SAFI: On set up day. 

TASHA: On set up day we had one neighbor ask us three times like, “I’d really like to make signs at the tables it’d be wonderful to put a thank you to who gave the money. Now it’s the day I think you can tell us.” So long story short we ended up telling people after the event because they were still asking. They were like, “the events over” and I was like, “Fine. Starfire!” I’ll have to talk to the person on Monday about what to do now that I told everybody but I don’t even know how to like deal with this. But it was something that I could not believe, people’s curiosity would not let go of that, would not. 

KATIE: So is Starfire to you, like a very stigmatizing kind of way of presenting it, is that why you avoided it because it’s related to disability?

SAFI: Tim actually told us to do that. It wasn’t a matter of stigma it was more a matter of his experience was the second you say Starfire it becomes a disability project. Which is kind of the antithesis of what the concept is. So I actually completely agreed with him, the longer we cannot tell people the better because the focus should not be Soraya, I did not want to throw a carnival for Soraya, that wasn’t the point.

The point was we wanted to incorporate our micro-community here with our life and that would one day include Soraya but not because they need to but because they actually are incorporated in our life anyway. That to me was the more primary focus and I think that if we would have made this Starfire any earlier than it was done, the research and the google searches would have led them directly to the disability arm of Starfire and then all of a sudden the entire feeling and flavor of the carnival may have changed. And that would have made me sad because I think what we created was something much bigger than a carnival for Soraya.

I think that what we created was a real chance for this community which our local, our double courts and the street that brings us in to really get together and in this case for our neighbor who has ALS and I think that’s awesome. That's kind of the point, you know?

KATIE: Yeah, it’s beautiful. It’s beautiful and so well said. So one of the things that’s bringing up to me, when you’re saying that everyone kind of stuck around and was invested what I’m thinking about is how key to community gifts are. People’s gifts. Maybe the comparison between the progressive dinner and the carnival is that everybody was able to offer their gift in some way by being a host of a carnival activity. So was that piece do you think central, where any of your neighbors brought to life in a way that hadn’t been shown before that you didn’t know about them before? 

TASHA: All of them. Actually that was it. You already nailed it. Like to have one neighbor who nobody had spoken to except Safi that owns a pizzeria or multiple pizzerias and he single handedly donated all the pizzas for the entire carnival and met so many people. 

SAFI: And the other thing is, I think that story is actually worth while diving into is that he’s kind of enigma for the neighborhood. He works  a ton so we don’t see him very often. The house always kind of sort of seems to be empty but it’s not. It’s so like people have all kinds of mystery theories about him but the bottom line is he’s kind of a real stay mobile and he owns a bunch of pizzerias and so like he is constantly busy. Here is a guy that nobody knew that by the  middle of the night he was the place to go hang out. He offered, like we had to move the bounce house out of where we had it, he offered it no problem the front of his yard. I would have never picked his house to be the one to put the bounce house in and have all the kids essentially live like there’s so many great pictures of all the neighborhood boys sitting on his front porch. If you would have told me six months ago that that picture would’ve been taken I would have laughed, literally, like no way. 

TASHA: Like people didn’t even know his name. Nobody had ever really met him. 

SAFI: Even their next door neighbors whose really good friends with us, because I’ve lived here for three years and I didn’t really know him, they used to talk for like an hour and a half and the guy they were talking about, our neighbor the one that owns a pizzeria he came up to me at the end of it and he said listen, “I just wanted to thank you” he goes, “I have lived here for three years, I have always wanted to live in a neighborhood like this.” He’s like, “I got to speak with about everybody here and I actually got to know people and I really appreciate that, like that’s is fantastic.” And that to me kind of summed up the night because there’s the guy that literally is like a mystery, he’s like a ghost in the neighborhood and now not only does everyone know him but like he knows them. And I feel like that could be the beginning of him feeling like he could more incorporate himself and his family in this community. 

KATIE: I don’t want to put words in your mouth but it just sounds like this has changed something, like it’s a life change for you guys, it is a lifestyle change. 

TASHA: Now we want to know what happens next, you know, like where can we go from there. And that’s like something that we’ve talked about, what’s the best approach? But we don’t want it to stop now and so like thinking about how to make that happen that’s something we’ve been thinking about. Because I’m telling you it’s life altering and we will tell you this as a secret even though this is being recorded. Safi and I were so skeptical of this, we did not think it would work, I must be just a real pessimist. 

SAFI: No, no, I mean I…

TASHA: We really did not see this happening like this. We were shocked. Every time I looked at the e-vite I’d be like, “What?! People are coming to this and it’s a Thursday night.” I can’t even imagine. 

SAFI: I am extremely pragmatic surgeon by nature. So I look at things logistically and so I was very out set like this is never going to work, people are never going to do this, this doesn’t make any sense to me. Because how could… Why? The why killed me. Why would people invest in themselves when we’re all busy with our own lives, that’s what happens.

But it is remarkable to see the difference in when people actually feel like they want and they want to do this they’re willing to go a mile. We made a sign up genius in order, well we didn’t our neighbor did it, they made a sign up genius for essentially shifts to watch the bounce house or whatever. There were so many slots I was like, “this is never going to get filled.” Yeah, it got filled in like two weeks, every slot. 

KATIE: Oh wow. 

SAFI: These are people they live in our neighborhood, they’re willing to spend a half hour watching other people’s kids. It’s just unbelievable. Just because they… it just needed to get done. This is what I want, this is the neighborhood I want to live in now for good. It’s like a different feeling for me when I drive home it’s a different feeling when I drive into the neighborhood like this morning. I pulled the window down and chatted with one of our neighbors around seven o’clock when he was walking his dogs. I would not have done that. 

TASHA: He’s never done that before. 

SAFI: I would not have done that a week ago and I am a super friendly guy I think in general but it’s different though because there’s no context to put your window down and say, “Hey how’s it going?” It was actually pretty awesome. 

KATIE: Yeah, so yeah the contexts has totally changed where you guys live. You changed the context in a three hour time span carnival that was planned over time and now you guys have whatever comes from this I just want to say because you keep saying you want to know what’s next and I think what I’ve experienced and seen is that at least it evolves and it is just different now. Like what is next is that you guys have this neighborhood to live in and whether or not the carnival happens actually is kind of incidental but it’s you making that effort to wind down your window and say hi to a neighbor walking by with a dog that that’s going to be whatever the next phase is going to come from those types of interactions. What is you hope for people who want to build community but don’t know how?

TASHA: I mean even though it seems very unstructured I think just trust it because a lot of it I like don’t even know how to go about getting a meeting started. When you’re talking to people act like everyone’s coming, make it a real convenient time, try to kind of identify who your champion person is going to be, make sure they can make it. Talk to everybody else like everyone’s going to make it. Ok I did that, it worked.

So as much as you might have doubt and hesitation if you really follow what your intent is going to be for the project and you're passionate about that know that if you just take those little steps with each phase of the process know that this will happen. And kind of have faith in that. 

SAFI: Yeah, I think that as the process moves forward there are certain steps that are deliberate in terms of ok got to set up that first meeting, and you got to come up with this idea. And to me I was overwhelmed initially like how do you come up with the idea or a meeting. But the reality is trusting that particular process like Tash said I think is really important because you know it’s unconventional. It’s not what you normally think, at least for me it wasn’t, it’s not what I normally thought in terms of trying to bring people together but this concept, Starfire is on to something. This concept of incorporating life around say our child with disability the concept should not be really just the focus of disability but the concentration should be incorporating that person in that life around them that they already live anyways. I am a firm believer now. 

TASHA: I also think that if somebody said, “Here Tasha, here’s some money go plan a carnival.” And if I didn’t have the guidance of Starfire it would have looked totally different. Because in my mind I would have created something totally different, I would’ve said this is what I want and this is how it is going to be. One of the biggest things that Tim had kind of told me along the way is be flexible in how this is going to look because how you imagine it may not be how your neighbors imagine it. And let them take the lead on ideas that they have. That’s something that I probably would not have allowed and I would have been like, “No, no, no, no, no that’s not what I’m thinking, no we’re not doing any ALS fundraiser I want a carnival ok? I want a band, I want clowns.”

So, point being that it took the pressure off of me when I let people take on their own vision and it was actually really nice to have that kind of leadership where it was like somebody would mention something and I’d be like, “Great, go out and look into it and we’ll do it. That sounds awesome.” So that was a big take away as far as trying to plan an event like this and in the beginning of it it’s important to remember that it might take a life of its own and that’s ok. 

SAFI: Yep, and people tend to invest themselves I think in general in things that they have a say in and things that they have a vision in. Where in otherwise it’s not necessarily them. So in that case I felt like when I was walking around the carnival really I was seeing a bunch of different visions from all of our neighbors kind of put together in an organized fashion. And I think that that is very different than if Tash and I had our way with doing it because if we had we’re very like pragmatic, like this is how it’s going to be type people in terms of like trying to organize things.

But I think this way everybody can look around and see themselves in the carnival. And I think that that is exactly the point to be able to say not only do I want to be a part of this but I want to be a part of this because I helped build this.That’s awesome because that’s not what I had initially envisioned because I didn’t think people were capable honestly of doing it in terms of like doing it consistently for six months of planning and all this. But they did. 

TASHA: It was just beautiful how people chipped in. 

KATIE: Well and it’s some really solid advice and I think it’s also getting to something that maybe is at the core of why as Americans we are so lonely. And one of those reasons is that we’ve taken on this idea that we have to do it all ourselves and that we are independent and if we ask for help or if we wont let things be less than perfect in what we imagine it to be that we’re failing at something and so being able to offer that inclusivity of everybody’s gifts, everybody’s opinions, everybody’s ideas is counter cultural right now but it’s what we need and I think it’s what's proofing to you all that is what your neighbors needed as well. And it’s just such a beautiful story so I thank you guys for sharing it.

2014:
 “What happened to Annie?”  I asked her, my feet still in the street, car door swung open.  I interrupted the walk they were trying to take before darkness overtook the sky.

“She died.”  Like being asked cream or sugar for one’s coffee, without hesitation or a hint of melancholy, she answered quickly.  The nonchalant response was disconcerting.

“I know that…” I trailed off, my eyes fixed on the For Sale sign in our yard, embarrassed that I wanted to know the specific details.  “I mean, what happened to her?”

Annie was my neighbor.  We borrowed her lawnmower one summer when the one we had finally died.  The rubber primer rotted to dry dusty pieces and the motor gave in to our negligence.  We hadn’t properly cared for it the last winter, tucking it haphazardly under the deck, leaving it exposed between wooden beams. 

When we also didn’t have gas in our garage and had to walk back across the street to use hers too, we offered twenty bucks.  I expected she wouldn’t accept it, after all it was an ‘it’s-the-thought-that-counts-gesture’, that neighbors do, but she did.  She took the $20 in exchange for what she insisted would be “unlimited mower use forever.” 

The next day I found a card in my mailbox from her with a coupon to Chipotle for buy one get one burritos.  She was funny like that.

When she wasn’t in her yard, I didn’t think much of it.  It was getting colder and an early snow had cancelled schools and caused delays early in November.  By the time I noticed, she had already been dead for 12 days.

Some weeks she was frenetic, picking clover and crabgrass out of her lawn and edging her sidewalk til thick stripes of soil framed the grass and bare spots dotted the lawn.

Other times, she’d be canvassing the street collecting trash with a plastic grocery bag and cordless phone in her hand, like she was awaiting an important call. 

But mostly, she was peculiar, peeking through her front window and quickly disappearing behind a curtain when I’d catch her looking.  At night, from my bedroom window, I’d see her standing in the corner of the shades, looking out.

Never raising her eyes from the dog she had tethered to the leash Sandy, my next door neighbor answered me.  “They thought suicide, but I think that’s unlikely.  She was real close to her family.  Probably was drugs.  She was on a lot of different meds.” 

I came home once to find a rosary enclosed in a gift bag tucked inside my screen door.  The note explained the rosary was blessed by Pope John Paul II on a trip she made to Italy years ago and she wanted my newborn daughter to have it so we could remember her when we moved.  A week later she was found dead in her home.  Sandy said she had been there at least three or four days before anyone found her.

Sandy’s dog pulled on the leash, signaling her intent to continue walking.  Her son tugged on his mother’s coat with his gloved hand.

“What are they gonna do with the house?”  he asked, bundled in a puffy blue coat and scarf.  A few wisps of snow had started to fall as we stood there.

The electricity was shut off and the house was nearly invisible at night, a silhouette lighted only by a streetlamp some doors down.  Fake candles in the window gave the impression that someone might have still lived there.  The batteries died about a week after they were put up and all that remained before we moved was the dark vacant skeleton of a home.  I looked out my bedroom window at night, holding my newborn daughter, and squinted my eyes, expecting to see the curtain move.

2019
We moved in 2015.  A bigger house a few blocks away. Same neighborhood, different neighbors.

Our first dinner together in 2016 was meatloaf.  The classic kind that German-descendants make around here with onions and ketchup and baked beef or pork smashed into a bread pan. There were garlic potatoes and white bread with butter and a little fold out table set in the middle of their dining room. It was familiar, like stepping back in time and eating dinner with our own grandmothers.

Todd pulled out his portfolio of drawings, pencil and charcoal sketches of landscapes, trains, Cincinnati landmarks, his children “Danny when he was 4”, his wife “this one here is Lydia in her wedding gown 1968.”  Lydia’s eyes met Todd’s across the folded table, and they smiled at each other.

Todd and Lydia had lived there for decades before we moved in. Todd, an older man who used a wheelchair, was a porch sitter, overlooking our street below. A nod became a wave, a wave became a “you got a minute?” and from there my children we were picking strawberries from their backyard, giving gifts of dandelion bouquets, and coloring pictures for them. Lydia watchfully eyeing the kids scootering back and forth down the sidewalk of our busy street, yelling from time to time to slow down!, get down!, or turn around!

They had grandkids of their own, at least 7 with more on the way, but it didn’t stop them from bringing back gifts from their vacations for mine – a collection of Disney characters once, coloring books another time.  A jumbo bucket of sidewalk chalk another.

When Annie died in 2014, we had no idea.  It was twelve days before we noticed.
When Todd died, we mourned. We saw the flashing lights, the fire truck, the coroner.

We walked next door the next day, and hugged Lydia on her porch. We bought a plant, wrote a card, and checked in on her weekly, invited her over for dinner, for a drink, even though we knew she didn’t drink at her age.  She declined, graciously, a widow in mourning at her own pace.

Our family room window upstairs looks down into Lydia’s living room below. Some nights, when her son Danny visits, my son, Rowan will see them, his striking resemblance to his father and say “Look Mama! Todd didn’t die!  He’s back.”

We talk about how everyone, eventually will die. And that no, Todd isn’t back.  We talk about our sweet neighbor Todd and how he used to watch the bees and get our mail the summer the mailman refused to walk past our hive. 

And then, we text Lydia and ask if she wants some left-over cake, needs anything from the store.

“His world has been so small.  He doesn’t see.  He doesn’t hear.  He doesn’t speak.”

We sat in our small group, listening.  The struggle she described was very different than the reflections others had shared around making introductions at a local sewing circle, or how to help someone remember a friends birthday coming up, how to collect more donations for the Humane Society and grow the project to include more people.

Bonnie was at a loss. 

She really didn’t know what might interest Ted.  He couldn’t tell her. He couldn’t hear what she might be suggesting. He’d had no spikes of achievement in his life to her knowledge, no big momentous occasions to celebrate over his 50 years of life, no celebrations that she was aware that might give her some ideas, a clue into what he might enjoy, no hobbies unique to him that anyone had ever mentioned in meetings or MyPlans.

Mostly, Bonnie said, she wasn’t sure where to even begin.

The group was quiet.  Reflecting on the depth of work that might be required to begin to explore what might make sense for Ted, what goodness the two of them could work on together if Ted himself couldn’t tell her.

Instead of suggesting ideas, we simply held the space that Ted was worthy of a good life.  And any small nudge in that direction in itself would be good. 

Just begin, the group agreed. Explore.  If Ted hadn’t had any experiences, the world of experiences was new and open to him – and wasn’t that an exciting problem to have?

Bonnie left the meeting with a bit more encouragement.  Knowing, that whatever small step was next for her and Ted, was worth doing.  That there was a worth in small things – going to one new place, meeting one new person, exploring one new hobby, having one day to start thinking on what a good life might look like.  And knowing that a good life, starts with doing one small thing at a time.

“She’s like a totally different person when she’s not in the group.” She remarked. “You know, she’s actually smart, and kinda funny. Not at all like when she’s driving me nuts on the workshop floor.”

For six months in 2019, Starfire’s team facilitated learning session with another Ohio organization.  Our aim was to help provide a vision and tactical steps to work their way out of a day program and sheltered workshop more frequently, to provide more individualized supports, and to launch a mini project in partnership with a person with a disability in the community. Our sessions were part brainstorm and part affirmation that this was new and difficult work to start to think of our roles outside of structured 9-3 program models.  The conversation shifted to be about one particular “client” served by the organization and the frustration a staff person had had with her that day in the program.

“She just wants attention.” Another staff worker chimed in.  “That’s all it’s about with her.  Attention.”

I nodded and told them the story of Melanie and her “attention seeking.”

In the days of the day program, Starfire U, when our building on any given weekday held over 120 people with developmental disabilities and dozens of staff leading outings and activities, Melanie attended our program.  Sweet natured and whip-smart, she’d flash a smile asking about your day, your kids, your weekend plans, your thoughts on recent movies, recipes, and just as quickly furrow her brow and be confused as to why someone would be mad at her for: kicking them on a Metro bus, slapping them on the cheek, for moving their stuff without their permission, for yelling at them, for pushing them, for telling them to shut up, for calling them names under her breath, for cursing at them.

I am not proud of it – but in a frustrating afternoon, after many requests from multiple staff for Melanie slow down, make better choices, leave the room, get a drink and take a breath, and on the cusp of having to write up another incident report about her “behavior” I put on my coordinator hat and printed out every single incident report ever written about Melanie that past year – January, January, February, , May, May, May, August, September, October, October, October...  A dozen or so, stacked up in succession.

Incidents documenting her behavior with other people with disabilities, towards staff, on the bus, in the program, and in more than one instance, her behavior bullying others from the day program online…  And I began to read them to her aloud:

“When Lena arrived Thursday morning around 8:15am she asked to speak with a staff member, John in private, voicing that she had been hit by another member (Melanie) at the bus stop the previous afternoon after leaving Starfire. She told staff that another member, Melanie had hit her unprovoked with a book while waiting for their next bus. Staff told Lena that they were concerned about the incident and would talk to Melanie immediately. When Melanie arrived at 8:00AM, staff member, John, pulled her aside and asked her to explain the incident that happened with Lena. She expressed that at the bus stop Tuesday afternoon Melanie had yelled at her multiple times before hitting her with an open hand in the collar bone area.”

Melanie cried, tears streaming down her face, and, I paused briefly, only to ask her ask her if I should continue.  Should I continue to read the way people see you? The way you treat them?  She said no that she’d try harder and better and we spent the next 25 minutes or so alone in a conference room chatting.  Me reassuring her that she was a good person and our actions don’t define who we are, but that we had to try better. Her smile was quick to reappear, the tears completely gone, her chipper self, returned.

I don’t remember what happened next.  I imagine a call was made home, a meeting might have happened with Melanie’s team and another incident would have occurred again repeating the same cycle.

The memories of the day program have since faded and the frustration of what those days felt like – the 9-3PM grind transportation drop off, attendance taking, doing art projects, baking projects, yoga, guest speakers about random topics – field trips to museums and zoos and Red’s Hall of Fame have also begun to fade.  I’m able to really process what these types of experiences meant and mean now that I hear them coming from the mouths of colleagues in other organizations.
 
Was Melanie attention seeking? Was she merely seeking connection? Isn’t all behavior attention seeking in some way or another?

Each incident report written about her, meant 1:1 time in an office with staff attention uninterrupted.  Sometimes it meant sitting next to an office person and helping with tasks: shredding paper, assembling outgoing mail.

The empty threats of phone calls home, new reports documenting “behavior” were another way that Melanie got some time outside of the group. Outside of the seminar of 15 people all learning about checking accounts, or healthy smoothies, or whatever else was put on the calendar to fill time, to build “life skills.”

“She just wants attention.”

“That’s all it’s about with her.”

“She’s like a totally different person when she’s not in the group.”

“She’s actually smart, and kinda funny. Not at all like when she’s driving us nuts on the workshop floor.”

Attention seeking behavior wants a response from others.  Validation, to be noticed.  Which leaves me asking, isn’t everything attention seeking?  Don’t we all want a response when we talk or ask a question?  Aren’t we all seeking validation that we’re doing okay, on the right path.  Don’t we want people to notice when we’re having rough days, when we’re excelling, when we just need some reassurance. 

Reading each incident report was shameful. It played into a power dynamic that I am not proud of.  That as coordinator of the day program, I had the authority over Melanie to make sure she understood she was “bad” and that if she couldn’t be “good” then we’d just have to do something about that.

A few years removed, I realize now that the attention she was seeking was in the small moments of reassuring her, she was a good person, that I saw her as such, and that, it’ll be okay.