Different with Purpose | With Carol Combs and Achsah Fitzhugh

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

Jan Goings:

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

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

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

Carol Combs:

Yeah, thanks for having me. Jan.

Jan Goings:

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

Achsah Fitzhugh:

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

Jan Goings:

Awesome. Love it, Carol?

Carol Combs:

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

Jan Goings:

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

Carol Combs:

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

Jan Goings:

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

Carol Combs:

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

Jan Goings:

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

Achsah Fitzhugh:

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

Jan Goings:

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

Carol Combs:

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

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

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

Jan Goings:

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

Achsah Fitzhugh:

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

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

Carol Combs:

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

Jan Goings:

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

Carol Combs:

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

Achsah, what do you think on that?

Achsah Fitzhugh:

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

Jan Goings:

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

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

Carol Combs:

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

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

Achsah Fitzhugh:

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

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

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

Jan Goings:

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

Carol Combs:

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

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

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

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

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

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

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

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

Jan Goings:

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

Achsah Fitzhugh:

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

Jan Goings:

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

Carol Combs:

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

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

Jan Goings:

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