I loved speaking with Stacy. I saw a lot of my own experience in her story. We both grew up in families that didn’t treat us differently because of disability, had opportunities to learn alongside our peers, and found friendships and experiences that made our lives bigger.

I also learned from Stacy. Throughout our conversation, she kept returning to the importance of how you speak to yourself, especially when your body changes or the world makes things harder than they need to be. There’s a confidence to Stacy that comes through clearly in the way she talks about disability, friendships, her faith, aging, and advocacy.

Stacy is no longer teaching, but she continues to mentor other people with disabilities. Her instinct to encourage others while sharing the wisdom she has gained from her own experiences comes through again and again.

Would you mind sharing about your disability?

Stacy: I have cerebral palsy. At 6 months old, the doctor told my parents that’s what I had, because I wasn’t sitting up and my right hand stayed bent.

Laura: What was it like growing up with cerebral palsy?

Stacy: It was good. My parents treated me just like they treated my siblings. The kids can be cruel, but I was a little sassy. So, it wasn’t as bad for me. I have two siblings. I’m the oldest. I was a protector as a big sister. And they were so protective of me because I had a disability. My disability wasn’t seen by my family. Now, when you go out in public, people stare, people laugh, even adults. But I didn’t let anything affect me. It made me the woman I am today. Even as a child growing up, I would defend the other students that have disabilities who were picked on. I would stand up for them. That’s what led me into being a teacher and an advocate for people with cerebral palsy, or any disability.

I taught school for 20 years in Memphis as a substitute teacher. When my disability progressed, I had to stop working, but I keep myself busy by volunteering at a special needs school. It gives me a chance to see how blessed we are. Because there are kids there that have cerebral palsy that can’t talk, can’t move, you know, they’re just there. So, my way of doing is giving back, because I know some of them will never experience the things that I’ve experienced in life.

I was inspired by Mr. Porter, my teacher in high school. He was paralyzed from the waist down and used a wheelchair. I felt like if he could do it, I could do it.

Education & Self-Confidence

Laura: Were you in special education classes in Detroit?

Stacy: No, actually, I was in regular classes. First, I went to Leland. It was an elementary school for children with disabilities. After fifth grade, we graduated and went to a regular school. I was able to go to a regular school because of a woman named Maggie in Como, Mississippi. She took the issue to the president who passed a law allowing students that were capable of learning to be in regular classes. So, I was in regular classes through the rest of school.

Laura: That’s amazing and such a blessing, too. I’ve talked to a lot of people with disabilities through this project, and I hear how everyone’s schooling was a little different. Some of us were given better opportunities, and other people had to really fight just to be in a classroom.

Do you feel like being in school with non-disabled students was beneficial for you?

Stacy: It was beneficial to me. I learned how to operate in a world where people discriminate against you. Just from you walking in the door, looking at you, staring at you all the time, or asking you questions that make you think, “Why would you ask me that?” So, yeah, it benefitted me a lot, and I have confidence in myself.

I think that confidence comes from prayer, my parents bringing me up, accepting my disability as well, because, you know, some people’s parents don’t accept their disability. I had friends in school that would say to my parents, “Is that your real girl?” I didn’t understand the question at the time, but then I learned that disabled children were often given up for adoption because their parents couldn’t accept their disability.

Major Life Changes with Congenital Disabilities

Stacy: I’m on Facebook, in groups for people with cerebral palsy. I see a lot of people posting, saying, “I’m 40, my disability is regressing, and I have to stop working and go on disability.” And I will comment and encourage them, because I’ve been there, and I know how you feel. You know, you have to change your whole life from the one you lived. It’s hard.

For me, I enjoyed teaching. I enjoyed my students and everything, but had to stop in 2011. I actually had one of the young ladies from one of my cerebral palsy groups call me recently. She’s 22, and she was like, “Miss Stacy, I’m having a hard time finding a job.” She told me how she’s been discriminated against everywhere she goes. So, I talked to her and told her to keep on doing what she’s doing, because those doors will open. I’ve been there, and I know.

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What do you like to do for fun?

Stacy: I like to shop. I’m a clothes fanatic. I like to decorate the house. I like to travel, a lot of travel. My disability has gotten worse, to where I can’t walk a long way any more, so I’m waiting on a scooter they just ordered for me. That will get me back out into the city and seeing things, so that’ll help a lot.

Laura: What’s one of your favorite places that you’ve traveled?

Stacy: Las Vegas. Me and my best girlfriend, we’ve been friends since we were 5. She has cerebral palsy, too. We enjoy each other. We travel together. It’s been a joy, because it’s like your friends with disabilities can relate to you more when you can’t do certain things than a regular friend. And I love my friends that don’t have cerebral palsy, but, you know, it’s nice to be with someone that can relate to what you’re going through.

Laura: Yes, I love running amok with my disabled girlfriends.

Stacy: Let me tell you this funny story about me and a friend. She had cancer and a leg amputated at 11. She wore a prosthetic. So, we were in high school at the time and we were going to the mall. So, we’re getting on the bus, and everybody’s looking at us strange. When she sat down, I said, “Cynthia, where’s your other foot?” It was turned around backwards because her prosthetic had loosened up. We laughed so hard. No wonder everyone was looking at us.

Surviving Winter with a Physical Disability

Laura: How are winters for you?

Stacy: I don’t even want to go nowhere, because I’ll be in so much pain.

Laura: I hear you there. So, you get pain from your CP (cerebral palsy)?

Stacy: Yeah, I have a lot of stuff going on. Because of my CP, I have arthritis all over my body, so at times I can’t move. I just have to be like, “Okay, Jesus, I guess it’s time for me to sit down.”

You have to know how to speak positively to yourself, because if you don’t, the things going on in your body, when you can’t find anyone who understands, they can really get to you. So, you really have to learn how to look in the mirror and say, “Yes, this is me, and this is what’s happening now, but everything’s gonna be okay in the end.” And if you speak positively to yourself, before you know it, you’ll be like, “Oh, I did that by myself! I’m proud of myself!”

What motivates or inspires you?

Stacy: Just waking up in the morning. Now I realize, by going through what I’m going through, body-wise, just waking up in my right mind is a blessing—to go shopping, to put on clothes, to put on your makeup, do your hair.

I’m involved in a lot of stuff in church, so that keeps me going. I donate to an organization, and my church is behind me with that. I’ve been doing it since 2015. People at church help, they donate, they run for me. God has blessed me with tremendous people. I always wanted to help people like myself, so God has opened up doors for me to do that. I look back on the challenges that I went through. Now I know why he allowed them to happen, you know, I’m thankful.

Laura: Is it right to say you inspire yourself? It just sounds like you’ve been given these challenges, and you’re like, “I’m just gonna embrace it and go forth.”

Stacy: Yeah, you got to, because you know, sometimes you will have a little pity party for yourself, but then you’ll be like, “What am I crying about? Look what you just did! What is wrong with you, girl? Get up out of this and get it together! Go put some makeup on and go somewhere. Go comb your hair. You’re beautiful just the way you are!” You’ve got to keep that positivity, because you hear so much negativity in the world. You have to bag up and say, “Do y’all hear what y’all are sayin’?” So, you have to breathe in and let it out slowly, because you’re amazing.

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What change would you like to see for disabled people in the future?

Stacy: Just accommodations. Period. I think every door should automatically open. Now that I walk with a walker, it’s a task for me to pull the door, hold on my walker, and try to go in. That’s one of my things I want to fight for, for the public doors to automatically open, not only for the people with disabilities, but what about the elderly folks? They are not able to open those doors either. So, if I don’t speak up, if you don’t speak up, someone without a disability is not going to say anything, because they don’t know.

That’s what I’m doing right now, fighting the fight. We are here, and we are not going anywhere, so you might as well make this world accessible for us.

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I think it’s worth recognizing the tireless care and advocacy of parents and caregivers like Kim. This isn’t to diminish the stories of disabled people, but to honor the relationships that make so much possible. Disability is often lived through joyful interdependence, and that deserves to be celebrated too.

This Disability Pride Month, let’s celebrate disabled people, the caregivers and allies who walk beside them, and the communities that make belonging possible.

Would you mind sharing about your disability?

Kim: Enzo has a mitochondrial disease, and more specifically, it’s called Leigh Syndrome. Leigh syndrome can present in many different ways. Enzo specifically, is wheelchair bound and has a feeding tube. He lost his speech and a lot of his abilities when he had a stroke, when he was five years old. He was hospitalized for five weeks at that time. He had some stroke damage on the right side of his body, so he was right handed prior, but now he’s left handed. He’s fully cognitive and understands all dirty jokes, bad jokes, everything we’re saying. He’s age appropriate for a 17-year-old, as far as his cognition.

What do you like to do for fun?

Kim: [Talking to Enzo] Minecraft? Meema? His favorite person is his grandma, and he calls her Meema. He loves to play Minecraft and loves eating sweets. He loves playing pranks on people. He likes playing games. He loves telling jokes, hearing jokes, anything for a laugh. He loves to laugh.

He has a box, you open it up and a spider pops out. He’s had the flower you put on your lapel and it squirts water on someone when they go to smell your flower. [Looking at Enzo] You love whoopee cushions, anything to talk about farts. He loves his dog, Buddy. Buddy is some of your greatest entertainment.

What motivates or inspires you?

Kim: Enzo, do you have an answer for that? What motivates you? Do you know what that means? What gives you a feeling of purpose? You like messing with people. Making people laugh as a motivator. I do think he has something just in his soul that is motivating. Every obstacle he’s faced, he’s come through with flying colors, because things for his situation are quite grim. So, yeah, really just something in his soul, ya know?

What change would you like to see for disabled people in the future?

Kim: What change, Enzo? Let me think here. Well, definitely, more awareness. Like even dealing with parking spots for an accessible van is frustrating because people are completely unaware. You know bumper stickers that say, “Watch out for motorcycles?” I want to have one on my trunk that says, “Watch out for wheelchairs and cars of people in wheelchairs.” We are constantly facing obstacles when it comes to parking our van.

I also think a lot about rare diseases. I think there are more diseases we don’t know about, than we do know about. My dream would be to see research done, because things that are rare don’t get researched. Like Enzo doesn’t have a true diagnosis, because his condition is so rare. They do give him the diagnosis code for Leigh Syndrome and mitochondrial disease because he presents that way. In reality, he doesn’t have true Leigh Syndrome. To have true Leigh Syndrome you have to have two copies of a particular gene; Enzo only has one copy of this specific gene. Because he only has one copy, he doesn’t qualify for a lot of things. If there’s a trial for his disease, he can’t participate because he doesn’t have a true, full diagnosis of Leigh Syndrome.

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Would you mind sharing about your disability?

Patricia: On September 8, 1988, I was diagnosed with primary progressive multiple sclerosis (MS) at age 46. I had started taking unexplained falls, about five of them, and finally friends said, “You’ve got to go see somebody about this.” So, I went to my primary care, he sent me to the neurologist. The neurologist wanted to do an MRI, but our insurance did not cover the MRI, which at that time was $1,000. I said, “No, thank you. Can you just do with my story?” And so he did, and he gave me a 75% chance of it being chronic progressive MS. A year later, he had put it to 100% with the few little tests he could do.

Laura: How does MS progress?

Patricia: It’s different for everybody. I did everything I could to forestall the progression, but not medicines. I’ve never taken any medicine for my MS. I’m really not into medicine, nor do I even see a neurologist.

Well, the first thing I said was, I’m not drinking any more alcohol at all. I never did much, but it would always make me a shade off. I thought, “I don’t need to be a shade off.” So, right away I gave up alcohol. And then I became a pescetarian. I tried being a full vegetarian, but I don’t cook, and I wasn’t getting enough protein. So, I’m a pescetarian and have been that ever since. Then, I started working out with a trainer at the gym, Matt. I worked with Matt from 2004 to 2018. At that point, things had started progressing, and it seemed as though it wasn’t going to work as well for me to do that. Also, my attitude. Big time on attitude. I wasn’t going to focus on it. When I was first diagnosed, I went to one of those six-week group sessions for newly diagnosed MS people. Well, that just really turned me off, because all anybody wanted to do was talk about their MS. I did not want to do that. I’m an artist and at that point, I was in art school. So, I thought, “I’m gonna handle this my own way, and I’m not gonna focus on it.” It’s part of my life, I deal with it, but it’s not my be-all, end-all, it’s not my identity. It’s not who I am.

Laura: Do you have any friends with MS now?

Patricia: I can’t say that I have any friends with MS, or even any disabled friends, per se. Again, it’s been part of my life, but it’s never been my focus, and it’s not particularly been my identity, although in 2008,

I started taking self-portraits. It started just because I was sitting on the toilet, and I had my camera, which I always used to have with me, and I had my scooter, and I saw the sunlight in the lap of my nightgown, and it looked cool. I got my camera, I took a picture, and then I looked down at my feet on the floor, and then there was, again, some interesting sun. I took a picture. For some reason, I then said to myself, “Okay, I’m gonna get in the shower and take a picture of myself in the shower.” And I was using a shower chair, and it was a big deal to get in and all that, but I put it far enough back so that my camera didn’t get wet, because I was using my Canon, and I took a couple of pictures there. Honestly, when I did that, and I looked at those, I said, “I think this is a new project.” Because I’d always worked in projects. It would be a project of my living with my disability.

So, I worked on that starting in 2008. Then, in 2012, I went to PhotoFest in Dallas, the large portfolio review. A fellow from Wales, who ran a photo gallery, loved it. He wanted to publish the book, called Falling Into Place. So, you know, that was an amazing adventure. I was able to go on press in Antwerp, Belgium, by myself, with my scooter, scooting to the plane, changing planes, and staying overnight in London, all of it.

Laura: You did that all by yourself?

Patricia: Yup. I always traveled by myself. I even went to Lebanon by myself, with my scooter.

Laura: What are the logistics of that? Do they put your scooter under the plane?

Patricia: They do. I would roll my scooter right up to the door, and they would transfer me into one of their wheelchairs, and then put me into a seat. Then I would generally have to wait after everybody else goes, and then they would pull up my scooter, and hope that nothing happened to it.

Laura: Have you had any issues with that? I know wheelchairs get damaged on flights a lot.

Patricia: The only time I had kind of an issue was coming back from Lebanon. I’m a peace activist, so I was going to Lebanon to visit the family of a fellow that I knew, Rabia Haddad, who was Muslim, who was thrown in jail after 9-11. He was thrown in jail here in Michigan, and I got real close to him and his family, so I visited them in Lebanon. Anyway, coming back from there for some reason, they took my scooter and tried to throw it down the ramp/conveyor belt with the suitcases, so that was scary, but it worked out okay, it didn’t get hurt.

The last time I was able to travel was September 2018, I was going to New York. Dave, the co-owner of Photoville saw the photos I was posting on Instagram of the people who were caring for me during a hospital stay. He contacted me, and said, “We want to feature this in an exhibit at the Photoville festival.” So, they did. It was incredible.

Laura: That is really cool. I’ve seen pictures of the Photoville festival. It’s in Brooklyn?

Patricia: It’s in Brooklyn, right under the bridge. The exhibits are in shipping containers. I had been working with the curator, long distance, and it worked out. I stayed at a Holiday Inn that was within scooting distance of where the festival was, and I would just scoot back and forth, and do my thing. It was amazing, because people come up, and they look at your work, and they can ask questions, and you can talk to them, and take their picture. It was great. I met so many marvelous photographers.

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Discovering Photography

Patricia: I started it in 2000, when I was living part of the year in San Francisco. I would live on my own, my husband Eddie stayed here. I just started keeping an online journal. That was before there was even the word, ‘blog.’ I had a website, and I was obsessive about it. I’d write on it every day from 2000 to 2006. Then, I got a little point-and-shoot camera to add pictures to it. That was when I got interested in photography, and decided I got tired of words, and I just wanted to do camera.

Laura: Were you a writer before you were a photographer?

Patricia: You know, I’ve always written, one way or another, always.

Laura: When you went to art school, was it for photography?

Patricia: No, not at all. No, I had never done anything with cameras, it was visual art. I was a watercolor painter. I’d been winning awards for my work, but I couldn’t draw, so I decided to go to the Center for Creative Studies here in Detroit. I went through a year and a half, just taking a lot of life drawing, life sculpture, basic art and design, you know, just to learn how to draw, because that’s a skill. Then I got real involved in the art world. Whenever I do anything, I jump in. I can’t help it. I was part of cooperative galleries, exhibits and stuff like that. So, that’s what I brought to photography was that background.

The Scooter

Laura: When did you start mobilizing with the scooter?

Patricia: The scooter I got in March of 2000. That was in connection with my peace activism. I was using a walker that I decorated and put wind chimes on. She was called “Wind Chime Walker.” I had a website called Wind Chime Walker. It’s still up. Anyway, I couldn’t do all the demonstrations I wanted to do with my walker; I couldn’t go far enough. There was going to be a mammoth international summit about immigration issues. In Seattle, in 1999, there had been a huge demonstration that became very famous. The police tried to stop it, and the organizers wouldn’t let it be stopped. It was really quite phenomenal. We were having that over in Windsor, and I knew I needed to be there for 5 days. There were going to be lots of teach-ins and everything, but I needed to be able to move around. So, that was when I got my scooter.

Laura: It seems like your life is leading your disability more than your disability leading your life. It can be easy to get wrapped up in disability being your only identity.

Patricia: I must admit, the first time I became aware of my identity as a disabled woman was when I started doing the self-portraits. I thought it was going to be physically hard to take the picture, but it wasn’t, really. I just came up with all kinds of techniques. It wasn’t hard, but the hard part was looking at the pictures on my computer afterwards, because I was seeing myself as other people saw me, and all of a sudden, I saw how disabled I looked. That was hard. It was like I went face-to-face with it all.

So, that really helped me in a lot of ways, because I then could claim my disability. What I began to realize was that my body was a warrior, because I was not letting this stop me. That was what I saw. It was really an important thing.

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Caregiver Appreciation

Patricia: I’m geographically limited and not able to travel anymore, because I need a caregiver in the morning and a caregiver in the evening, every day, seven days a week. So, you know, that’s my life now, and a lot of life is just trying to find replacement caregivers when someone leaves. My focus has changed, my goals have changed. I used to have a lot of professional goals as a photographer, as an artist. Now, my main goal is for Eddie and me to be able to stay in our home. That is my main goal, whatever it takes for us to stay in our home. So, really, my focus now with my photographs, because my photographs are always what’s happening in my life, I have a lot of photographs of my caregivers. I love showing people, these wonderful people, who are so much more than you think. I want them to be valued, and I want people to see their individuality. I love showing off Sharnita, and just every one of them, each in their own way, are making our life possible.

And then there’s Brenda, Magic Brenda, I don’t know what we’d do without Magic Brenda. She comes Monday through Thursday evenings. God, she can do anything. So, you know, just whatever’s going on in my life, that’s what I photograph, and that’s what my projects are. Also, Eddie’s World, you know, Eddie is my main person. He’s the person I’m with all the time, so I’ll just take pictures of Eddie, doing everything. He keeps coming back.

What do you like to do for fun?

Patricia: Well, Eddie and I love to come down to the park. Eddie loves getting his special hot dog and fries from the concession stand. And for me, really, my most important thing, and it’s why winter’s really hard for me here, is I need to be able to get out and scoot. I need to be able to get out of the house. That’s my freedom. I go as fast as I can go, and I don’t have to be going anyplace, I just really need to get out. And that, to me, is again, something that if I were in a facility, they would not let me do. That would be a nightmare.

I love to read. I read novels that give me a different point of view, a different perspective. The one I got this morning is written by a Vietnamese writer and novelist. She was raised in Vietnam, and, you know, I love being placed someplace else. In someone else’s head. I like to learn from them.

What motivates or inspires you?

Patricia: Just getting up in the morning and still being at home, and having Eddie still at home. Being aware of how grateful I am, because I can look back. I’m old enough to look back and see the things that now I’ve lost, that at the time, I didn’t realize they were that precious. But now I’m trying to be very aware of every gift that I have, and being grateful, and being aware of it, and being present in the moment.

What change would you like to see for disabled people in the future?

Patricia: To me, it’s all about accessibility. Just let us be able to go and do what we want to go and do. I feel very fortunate. We live in a community where, really, everything is accessible here. We moved into our house 53 years ago. I was running marathons at that time, so I would never have known that accessibility would be important, but it’s a very disabled-friendly community to live in. It’s marvelous. So, I would like that to be true for everybody, and whatever one needs, especially, like, caregiving, I want that to be paid for. I don’t want it to be that you have to get rid of everything to get on Medicaid to have it paid. We need to be able to have the care that we need, and have it taken care of.

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In our conversation, we talked about invisible disabilities, the difference between self-blame and self-understanding, and how his own mental health journey shaped his path toward becoming a social worker and therapist.

Would you mind sharing about your disability?

Jordan: I have a few different mental health diagnoses. I have a major depressive disorder, ADHD, and also complex post-traumatic distress disorder (CPTSD).

Laura: How was getting diagnosed for you?

Jordan: It has come in waves. So, first I was getting treated for depression and anxiety. Then over time, I realized that all these symptoms aligned with ADHD. I was just never assessed for it as a kid. Then around age 21, I finally got assessed for it and a diagnosis. Then, a few years after that is when I really started digging into some of my trauma experiences, and found that I met the criteria for the CPTSD diagnosis, too.

Laura: Do you have a good doctor or psychiatrist that you’re working with?

Jordan: I’ve been in mental health treatment care since I was 18. I’ve gone through several different doctors, therapists, psychiatrists. I’ve had good and bad ones. The people I’m working with right now, I’m really happy with.

Laura: Can you tell me a little bit more about your mental health journey?

Jordan: I definitely always struggled in school. I’m a very good student, if I can toot my own horn. I did pretty well in school, but it was always a struggle. I was always getting things in late, and completing things at the last second. It wasn’t until I went away to college for the first time, and really struggling in that first year that I started looking into my mental health, and realized I had depression. Later on, I realized I was struggling with these things that turned out to be ADHD.

Laura: I know there can be a genetic component to ADHD and neurodivergence. Are other people in your family neurodivergent?

Jordan: I’m not sure. I definitely see signs of it in my family, but I was never assessed for ADHD because my family just never thought about those sorts of things. So, it’s never been discussed. I can see it in some people, especially on my dad’s side, but they would never claim to have it.

Identifying as Disabled

Laura: When did you start to identify as disabled?

Jordan: I would say it started around when I was diagnosed with ADHD. I think that whole process made me really look at how much it was impacting my life and the way that I function. Realizing all the struggles I had in school, and getting motivation to complete projects and things like that, wasn’t due to myself or a moral failure, it was just that my brain works differently.

Laura: Do you feel like CPTSD is more disabling or as disabling as ADHD? Do you feel like it’s even fair to compare them?

Jordan: Yeah, I think it is fair. I think it’s equally disabling in different areas of my life. ADHD is more so in my work, and in my school, and my general motivation. PTSD definitely affects my social life more. It makes it harder for me to open up to people, trust people, things like that. So, it’s something I also have to work around just in that other area of my life.

Laura: How do you feel that the major depressive disorder disables you?

Jordan: I feel like that comes up in waves. I’ll have a day or two here and there where I’m so down, and struggling so hard to get out of bed, or get motivated. I’ve had to develop coping skills just to get through that. Also, having to get comfortable allowing myself to take a day off if I need it, just because I’m struggling, and not feel guilty or like I’m letting people down. It’s been a huge process for me.

Laura: Could you talk about your experience having an invisible disability?

Jordan: I think it has been hard on a personal level, because I’ve had trouble accepting it for myself. Especially growing up, people not recognizing or even considering that I had things going on inside that were causing me to struggle. My parents would never bring it up. It was never, maybe he has ADHD; maybe you should bring him in to check it out. It was just, he needed to try harder, he got lazy, you know, all that stuff. Which, I can understand because they just didn’t know. I don’t blame them for it, but also, I wish somebody could have stepped in and picked it out.

Laura: Are you able to talk to your mom about these things now?

Jordan: Yeah, when I was in college and really struggling, I was in a really deep, dark place. Up until that point, I never really knew how to talk to her or ask for help. It took me getting to that point to finally reach out to her and be like, hey, I’m really struggling. I think having that conversation and experience opened her eyes up to how she had kind of let me down as a parent growing up, you know? She’s my biggest support person now.

The Road to Social Work

Jordan: I’m from Baltimore, Maryland. I started out my undergraduate degree at the University of Delaware, close to my home, but a little bit far away. I ended up really struggling and moving closer to home, where I finished my degree in psychology at Townsend University. Then, I came to Michigan for grad school at Wayne State.

I knew I wanted to be a therapist. My original goal was to go into clinical psychology, or something along those lines. Through completing my undergrad degree in psychology, I learned I was not happy with the philosophy around it. It was very corporate and very medical. I prefer social work where it’s more person-focused, and that’s always been my philosophy. I feel like social work fits me a lot better.

Laura: Did any of your social work education inform your own journey of identifying as disabled?

Jordan: Yeah, I think in my practice, and then, in my life in general, I am trying to be as authentic as possible. I think that’s really important in therapy, especially, to be authentic in your work. I think accepting those things about myself, that I’ve either just not thought about, or just been kind of suppressing, has been a big part of that, too.

What do you like to do for fun?

Jordan: I like hanging out with my dog, Arlo. I just adopted him in August, and it’s been really fun getting to know his personality. When I’m at home, I like to cook. I like to practice my instruments- bass guitar, drums, and a keyboard. I like to read and play video games. I like to explore. Having ADHD, I kind of get sick of the same thing. If the weather is nice, I like to go outside and play sports with friends, or just go on long walks with Arlo.

Laura: Which sports are you into?

Jordan: I like to watch football and basketball. Being from Baltimore, I’m a huge Ravens fan. I like to play basketball, soccer, football, or even just toss the football around.

What motivates or inspires you?

Jordan: Right now, it’s my work. I really love the work I do with my clients, and getting to see the progress they make. That’s also what’s motivating me to work on myself to show up and be a positive influence. Sometimes, I’ll say something to a client, and I’m like, why haven’t I told myself that? I should be nicer to myself.

Laura: I’ve heard that often people who become therapists were the therapists in their families growing up. Do you feel like that was true for you?

Jordan: Not so much with my family. With my friends, definitely. I was the one that people could talk to. My family was always sort of closed off, so it was more me thinking about my own feelings and kind of processing on my own.

Laura: Do you have any siblings?

Jordan: I’m an only child, and I grew up mostly in a single-parent household. My dad was around until I was 15, and then it was just me and my mom.

Laura: I bet she misses you.

Jordan: We just saw each other for Thanksgiving, so that was really nice, but yeah. We call each other once a week and catch up. We’re very close. We were both living in Baltimore before I came to school at Wayne State in Michigan. After I moved, she was like, I’m just gonna go to the beach and live there. It’s an amazing place. She’s got her own dog, she loves it there.

What change would you like to see for disabled people in the future?

Jordan: I would just like to see people be more accepting. I think the discussion around disability, and especially mental health, from my perspective, has gotten a lot better. There’s still a lot of people who struggle with understanding disability, or being comfortable with disability, or just being accommodating in general. I think everybody just needs to give each other a little more slack, and be a little more gracious.

Their shared humor and way of moving through the world are what make them such a powerful pair. Being around them, you can’t help but feel energized by their presence, understood through their empathy, and inspired by their tenacity.

Valarie is someone who brings joy with her. She is a pharmacist, devoted dog mom, crafter, and Taylor Swift lover, who is quick to laugh and very thoughtful.

When we sat down for this interview, Valarie was in the middle of an incredibly difficult year. She had recently lost her mother and experienced significant changes in her vision, which led her to stop driving.

This interview shows a moment in time where grief and joy exist side by side, a complexity understood by many.

Would You Mind Sharing About Your Disability?

Valarie: My primary disability is osteogenesis imperfecta (OI), or brittle bone disease. I’m three feet tall and I’ve got metal rods in both my femurs and my right tibia that they put in when I was a kid. That really strengthened my bones, and they were telescoping rods, so they grew with me, but not that much.

Laura: I didn’t know that they could do that.

Valarie: You know, there have been all kinds of problems, some people really don’t like the telescoping rods, so those kids have to get the rods replaced as they grow.

So, that’s my primary disability, but it also affects my teeth and I have a condition called keratoconus in my eyes. It is pretty much when your cornea isn’t round, it’s football shaped. My right eye was my bad eye and in 2014 I had a corneal transplant. It was successful. It was kind of a gamble, because no one had ever really done a corneal transplant on someone with OI that we could find, but the surgery was a success, but I developed glaucoma after the surgery. I was on drops, and it was under control and then all of a sudden, it wasn’t.

The problem with going blind in one eye is that I didn’t realize it was happening, because my left eye was compensating so much. So, I lost most of the vision in my right eye. Then in like 2021 or 2022, that eye had another problem, and the corneal transplant failed. They tried to do a second one, and that failed also. That’s why the eye is now pretty much totally blind and my vision is getting worse in my left eye. I used to drive up until a year ago.

Laura: Is glaucoma common after a corneal transplant?

Valarie: It happens sometimes if your eye is sensitive, or if you’re having a lot of inflammation, they’ll put you on prednisone drops. That can increase the pressure in the eye. But I was not on steroids at that point, it was just a secondary complication.

Chloe (Valarie’s wife): There are other treatment options for other people, but not for her because her tissue is so fragile from OI.

Laura: OI makes your tissue fragile too?

Valarie: Yeah, especially the eye tissue. One of the hallmark characteristics of kids with OI is that the sclera, the whites of the eye, they’re not white, they’re more translucent. That’s because collagen makes your eyes white.

Chloe (Valarie’s wife): Her mom would swear that if the whites of her eyes looked blue she was more likely to break, so she was always keeping close watch on your eyes.

Valarie: There’s no science to back that. I also have ADHD, which I’m officially diagnosed with. I suspect I have a non-verbal learning disability, but we’ve only come to suspect that in the last several months.

Laura: Can you elaborate, what is a non-verbal disability?

Valarie: It’s a disability that doesn’t affect speech. For me, it’s mostly spatial. So, like, my dad would always say I didn’t have common sense. You know, I could never figure out how to do things and never knew how to get places and stuff like that. I’m also face blind and there’s varying degrees of it, but basically, I have a hard time remembering people’s faces. So, if we ran into each other somewhere, I might not recognize you.

Chloe: She’s very funny because she’s very recognizable, but she doesn’t recognize anyone.

On Vision Loss

Laura: How do you feel about not driving?

Valarie: It’s hard. About a year and a half ago, I had pretty good peripheral vision in this eye. I couldn’t see things head on very well, as far as acuity, but I could see okay. I lost that remaining vision at the same time we moved to Oakland County. So, losing the vision and being in a more challenging driving environment, was really overwhelming. I pretty much only drove on the highway to go back home to Davison, because we were emptying my parents house out.

After that, I lost my passport and I didn’t want to get a new passport, because I’m like, the instant I admit that I lost that thing, I’m gonna find it. So, I decided I was gonna get an enhanced license, just because we live so close to Canada, and I was hoping I would be able to get Taylor Swift tickets. I did not want the reason I couldn’t go see Taylor Swift to be that I couldn’t get into Canada. So, I decided to get an enhanced license. I remember doing the vision test. They were like, okay, read us the first 10 letters. And I look in it, and I can only see one. Then Chloe looked in it. I thought maybe it wasn’t functioning, but it was. They were super nice and were like you can see an optometrist and maybe… and I was like, no, if I can’t read this, I shouldn’t be driving. So, I voluntarily signed over my right to drive. So, I can go to Canada, I just can’t drive myself there. There was a lot of grief surrounding that. Plus, my mom had just died so it was really a lot.

Then, I became very hyper-focused on selling my adaptive car. Because Chloe wasn’t gonna be able to drive it and I didn’t want it sitting around. I accidentally found someone just by posting on my Instagram. I was writing about how I was sad that I couldn’t drive anymore, and someone that I follow reached out to me. She was like, I need a car. She and her husband flew in from Maryland to get it and drove it back.

Laura: Are those adaptive vehicles hard to get?

Valarie: They are insanely expensive. You’ll see advertisements for a used Toyota Sienna with a ramp, five years old, with 75,000 miles on it, and it’s $30,000. My adaptive vehicle was in good shape. My dad worked for GM. He didn’t know a lot about cars, but he always instilled in me that preventative care was really important, even for your car. So, every six months, I got it checked out. He’s like you can’t afford to have it break down on you, so I had taken really good care of it.

Laura: Do you feel bad having to ask Chloe to drive you places all the time?

Valarie: Yeah, losing that independence is hard. Sometimes it’s just the hypothetical that I can’t go just anywhere I want, but at least we live in Metro Detroit where I could get an Uber someplace if I needed to. But when Chloe had surgery, we had to have my friend come stay with us, because we didn’t have anyone to drive us to the hospital. She’s having another surgery in December, and we’re trying to figure out, like, how we’re gonna get there and get back because I can’t drive. So it’s been challenging in that respect.

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What do you like to do for fun?

Valarie: I like smoking pot. I like being outside and gardening. My dad was a gardener, so it kind of makes me feel close to him. I like mindlessly taking care of plants that are outside. I have some house plants that I have to be careful not to love to death. I listen to a lot of audiobooks. I really like the TV show, Supernatural. It was on the CW, and so my friends and I go to conventions sometimes. I also like crafting. I don’t craft anything useful. When I hoped I was gonna get Eras Tour tickets, I got a lot of beads and ended up making bracelets and stuff. This sounds so stupid, I’m a 38 year old woman, but there’s these blind balls that you can buy, they’re like toys that you make tiny foods out of. It uses UV resin. They’re called Miniverse. I have a bunch of friends who are all obsessed with that. So, I like making tiny food, they’re usually about Barbie scale. I’ve made a pretty tight group of friends that I met on Facebook. None of us live near each other at all. But we met because we’re in this group called, I’m High and These are My Minis. There’s like 10 of us, and the group and chat name is Mini High.

I like playing my Nintendo Switch. I just started playing Animal Crossing. I’m not a big video games person, but after my mom died, I was having a very hard time and doom scrolling on TikTok and stuff like that. One of my friends recommended that I get a Switch and I love playing Animal Crossing. It’s very therapeutic.

Motivation & Change for the Future

Laura: What motivates or inspires you?

Valarie: Oh, goodness. I mean, Chloe had such a good answer for this. I’m sure at one point I had a good answer for that. This has been a really hard year. So, right now, I feel like not much has motivated me. I’m putting one foot in front of the other and just trying to wake up in the morning and do my job. But Chloe really does motivate me. She drags me along in her shenanigans. So, yeah, I don’t have a great answer for that.

Laura: A supportive partner is a great answer.

Chloe: You show up for the dogs.

Valarie: They make it very hard to not to.

Laura: You’re very accomplished too. So, we know you are a motivated and inspired person.

What change would you like to see for disabled people in the future?

Valarie: I like recognition and visibility. I feel like, in a lot of things, we’re not thought of. Even people that you become close with, it can take them a long time to remember that part of you. They have to think of things from that perspective. For example, if we’re getting an Airbnb, considering this aspect would be difficult for Valarie to deal with, or whatever. I mean, I’d like to see more rights for everyone. I guess right now, I just want to keep what I have. I’m so nervous about what the next years of this administration will bring. So, visibility is a big thing. As a really short person too, visibility is literally a problem sometimes.

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Look out for Valarie’s interview next month.

Would you mind sharing about your disability?

Chloe: I mean, I guess that’s complicated. There are lots of things wrong with me, no, so I’m an ambulatory wheelchair user now, and I was able to walk growing up and stuff and then a whole combination of things like Ehlers-Danlos Syndrome and hip dysplasia that can’t be corrected, and then, I ended up with this autoimmune issue and now, now my nerves are dying.

Valarie (Chloe’s Wife): And she has gastroparesis, and had a feeding tube for a while. When we met she had a port and a feeding tube.

Laura: Gastroparesis, is that a comorbidity of Ehlers-Danlos?

Chloe: Yeah, but I don’t really think it’s my case. I think the issue is that random nerves in my body are just dying.

Laura: Can I ask what’s the name of your autoimmune disorder?

Chloe: Well, it doesn’t… I don’t know if it actually has a name. They’ve been trying to figure out what’s wrong with me. They took a lot of biopsies. It was cool because I got to see the cytology from the biopsies and I was like oh wow, there’s no nerves there. It’s really cool looking.

It’s some kind of autoimmune vasculitis, but it’s not one of the ones that has a name based on what type of vessels it affects.

Laura: Is there a general diagnosis code they use?

Chloe: They’re going with autoimmune vasculitis, unspecified. It’s causing small fiber neuropathy due to the autoimmune vasculitis, so I don’t know.

Laura: Is that really painful, having these nerve issues?

Chloe: No, no, actually it’s a problem. I can’t feel things. I just had abdominal surgery two weeks ago, and it’s hard to not overdo it because I can’t feel pain. I also can’t feel any visceral abdominal sensations.

These days I’m feeling quite nauseated, but I don’t ever feel stomach pain or fullness, I just feel sick or hungry. It’s kind of a weird situation.

Laura: So, if you’re feeling sick, are you like, all right, I’m not gonna eat anything, but if you’re feeling hungry, then you do?

Chloe: Yeah, and it’s weird to me because I had the feeding tube. So, I was very sick, like 90 something pounds. I just could not keep food down and I was actually working at the University of Michigan in clinical research there for the dermatology department. I had to stop working because I was just sick all the time. I had nasal feeding tubes for a really long time but I just couldn’t keep anything down, so I ended up with a GJ tube. Then I went on prednisone for something…

Valarie (Chloe’s Wife): We thought you had myasthenia gravis.

Chloe: Oh yeah, I took prednisone and then, magically, I could eat food again, and that was crazy, because I hadn’t eaten food for six years. I didn’t even really drink because I had IV fluids, so it was really weird starting to eat food again.

Prior to my feeding tube, I had really bad food allergies. Since I was able to eat again, I went and got allergy testing done. For the first time ever, I could eat milk and eggs. So, we had this big candy taste testing.

Valarie (Chloe’s Wife): She had never had milk chocolate. She never had caramel! It was wild.

Chloe: I went around asking everyone what was the one food that you would want to try for the first time again. A surprising number of people said lasagna. Four people told me lasagna. Of all the foods in the world, lasagna.

Laura: Did you try it?

Chloe: I still can’t eat gluten. I can only have gluten-free lasagna and I don’t know if it’s the gluten that makes the difference, but it’s not doing it for me.

Valarie: Yeah, it’s not. She doesn’t like casseroles, which is heartbreaking.

A Fistula Named Martin

Chloe: After discovering I could eat food again, we took my feeding tube out. I still have a permanent gastrocutaneous fistula named Martin. Are you familiar with the story of Dr. William Beaumont, the doctor that Beaumont Hospitals were named after?

Laura: No.

Chloe: Well, he was one of the fathers of gastroenterology and in the 1800’s they were up at Mackinac Island and a man got shot in the abdomen with a musket, and he survived. Dr. Beaumont operated but they couldn’t close the wound in his stomach all the way, so it just healed as a fistula. So, his whole life he had this hole. Then Beaumont would tie string around food and dangle it in and take it out to see how things got digested and how quickly, because we didn’t know this before. And the guy with the musket wound was named Alexis St. Martin and he’s this fur trapper from Canada. And he kept trying to run away.

Valarie: He did not consent to this.

Chloe: Beaumont kept bringing him back and stuff and trying to get him to sign a contract, but the guy was illiterate so he didn’t know what he was signing. Alexis St. Martin eventually escaped and so Martin is named in his honor.

Laura: This fistula that you live with…it’s closed? I don’t know what a fistula looks like.

Valarie: It looks kind of like a belly button.

Chloe: A fistula is just a tract connecting two different body parts. Sometimes people get fistulas in their intestines, organs and things there. So, it’s just a hole from my stomach to my outsides and it’s gotten smaller, but yeah you can’t dangle a chicken leg in there. Now it’s just Martin.

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Problem Solving Quarter

Chloe: January through March is Val and I’s problem solving quarter. The first quarter of the year we solve all these problems, and then the next quarter, we assess our solutions and then the next quarter we kind of decide what problems we want to retry solving, and then in the fourth quarter we make a plan. There’s an impact report and everything, it’s great.

This quarter we’re trying to figure out the transportation issue.

Chloe: Val is sort of going blind. We had a wheelchair accessible van that the power chair could go in, but I have a really hard time driving it, so we sold that and now she’s using her manual chair. I don’t know why we didn’t think of this first, because I can also push the chair from my wheelchair, but our first solution that I came up with was...have you ever seen parents that have two kids and one is in a stroller and then they attach this skateboard-looking thing for the other one to stand on.? Yeah, so, that was my solution.

Valarie: Yeah, I was on the back of her wheelchair. It obviously didn’t work out.

Laura: Tell me more about your troubles with the van.

Chloe: I have a really hard time driving it. There’s several things. It’s huge.

Valarie: It was a 2011 Toyota Sienna.

Laura: One of my friends has an adaptive van. She’s always got troubles with it.

Chloe: Yes, because the adaptations on this van were all electric. And there’s two batteries and they were always dying. We were always jumping that car.

Valarie: I didn’t have that problem before the pandemic because I drove every day, but after the pandemic, when I wasn’t driving the car as much, it was not holding up under less use.

Chloe: Yeah, and it had hand controls, so I was trying to learn those because I couldn’t drive it well with my feet, because I can’t feel my feet. Then, the backup camera was so small, we were gonna run someone over.

Laura: And I know parking one of those vans isn’t easy.

Chloe: It’s not. People don’t leave enough space, and it needs a lot of space.

Laura: So, what do you drive now?

Chloe: It’s a regular car. The wheelchairs just go in the back.

Laura: Is that hard on your shoulders? When I think about putting a wheelchair in my car, I think of my shoulders.

Chloe: I have gotten a lot stronger from wheelchair use and throwing these chairs around. But Val got to see for the first time what I look like today, trying to get her chair out of the car.

I’m always like why do people always ask me if I need help, specifically when I’m unloading her chair. I’m like what is going on?

Valarie: I saw why today. She has to throw her whole body into the car and her feet are just sticking out as she’s pulling the wheelchair towards her.

Chloe: I realized, as I was doing it, because this leg doesn’t really move very well. So, I think it was just one leg flailing around.

Valarie: Yeah, it’s really funny.

Wheelchair Dog Sledding

Chloe: Last year I decided that I was going to try dog mushing. Dog sledding, but in a wheelchair with our dog Skye. He wears a harness and I have a helmet, and I have this thing that attaches to the footplate of the front of my chair and it’s a big wheel and it pops the casters off the ground, so that way we can go over cracks in the sidewalk and stuff. And then his harness thing hooks under the chair. We do okay, unless he sees a squirrel.

But because I hooked the dog to my chair in this way, it twisted something under my chair.

Valarie: She warped the chair.

Chloe: I took it in to get repaired. They were like, how did you do this? And I was like, well you’ve heard of dog sledding… And they were like, okay, we’re gonna make up something else and put that down because the manufacturer and insurance are not gonna accept that.

Valarie: This was part of problem solving quarter last year.

Chloe: Some of the ideas don’t go well. I mean, it works as long as there’s no squirrels.

What do you like to do for fun?

Chloe: What don’t we like to do for fun? We have a really good time with our dogs. There’s three of them. One of them is crazy, so they cannot be all together at the same time. Then, we tried to turn Skye into the first, privately trained self-use COVID detection dog through a project we created called Project Covid Canine. We had a logo; we were prepared.

The problem is, in order to scent train a dog, you need a lot of scent samples. So, I launched this thing to get everybody I knew around the country to send us covid samples, but this was at a time when people were starting to stop testing. In order to collect the sample, we had a P.O. box, and I didn’t want people to send covid spit to the mailbox, so I had them collect armpit odor with a cotton ball. Still, we didn’t get enough samples.

Valarie: A lot of people were like, I can’t not wear deodorant when I get out of the shower.

Chloe: I’m like, it’s 15 minutes, put a cotton ball on! So, we got a bunch of samples and there was a website where people could anonymously submit their information and everything. But we just didn’t get enough samples because you need hundreds or thousands to scent train a dog. But we knew it was possible to train dogs to detect COVID because Val’s last service dog’s trainer did it.

Valarie: The trainer of my last two service dogs prior to Skye. They did try to do COVID detection, but I think they ran into the same problems that we did. They just couldn’t get enough samples. So, we decided it was just easier to go into isolation.

Chloe: Yeah, now we don’t leave the house during sick season. That is our solution. But what do we do for fun? Oh, recently I’ve taken up playing the violin again. I have really bad muscle spasms, so I can only play for a few minutes. I gotta get my hands back into shape. So, I like music...

Valarie: You like Wii sports.

Chloe: I do like Wii sports. Then, you know, I like nerdy science activities.

Teaching Girls in Afghanistan

Chloe: I teach science classes online. I have a lot of experience corralling children into using microscopes. I used to keep pond cultures so that I could have samples for protozoa, or whatever, to be able to show the kids live on the microscope. But it smells like a pond, so I stopped. It’s a lot of trying to just work with whatever the kids are doing. I teach chemistry and physics to little kids, and then I also teach science classes online for girls, in high school, in Afghanistan. It’s this underground online school because the Taliban banned education for girls after the sixth grade. Even just recently, I don’t know how they’re going to enforce this, but they just passed a law saying that adult women can’t hear each other’s voices, even in prayer. So, women can’t recite the Quran in front of other women. Then, there’s an issue with all of their media. They just passed a law that you can’t air anything that has living images and faces. So, what are you going to put on the tv? Faceless statues? It’s a problem. There’s this organization of political science professors in exile who started this online school, so it’s mostly for women who are trying to get their college degrees finished or to continue their studies. But I teach at the high school level mostly. I was trying to learn Dari. There’s not a lot of resources for learning online.

In Afghanistan the main languages are Dari and Pashto, but Dari is the language used for more official purposes, at least prior to the Taliban, because the Taliban just retook over in 2021.

Laura: Gotcha, I know women had some rights that were then taken away.

Chloe: The last time the Taliban took over was in ‘96 or ‘97. Then, we got them out in the early 2000’s. And then we left and they took over again in 2021. So,w I had a really hard time finding someone to teach me Dari. It’s not on Duolingo. It is on Mango languages, though, and a lot of my students in Afghanistan are actually using Duolingo to learn English. They’re so cute.
I asked everyone, do you know anyone who speaks Dari? And I eventually connected with this woman, who was a judge in Afghanistan and she had grown up during the period where the Taliban had been in power the first time, so her english skills were not very good. But once the Taliban were gone, she was able to go to law school and she worked with other women on the supreme court in Afghanistan. Then, the Taliban released the men from prison and the female judges became a target, especially because some men were sent to prison for violence against women. She fled with her family and they lived in a refugee camp in the UAE for two years and then she came in January to New Hampshire. So, she is working with law students in humanitarian law and she was learning English and I was learning Dari. I’m still practicing, but I haven’t been meeting with her as regularly.

Yeah, Val says I always have random shenanigans.

Valarie: She’s always up to something.

Motivation and Change for Disabled Futures

Laura: What motivates or inspires you?

Chloe: Everything is motivating and inspiring. I really like helping people solve problems and especially solving problems through curiosity, and I think that that really meshes well with what I do for fun and also what I do for for work. I just really I love learning and I want other people, adults, children, dogs, I want everyone to love learning. I think that motivates me and I do wish that we had a more scientifically literate and empathetic society.

Laura: What change would you like to see for disabled people in the future?

Chloe: Oh my goodness, access, access, access, access! You know, I just think about my own experiences in science. I love science education, but I was not originally on the education path. As I lost mobility over time, it became harder and harder to do research. The research I used to do, there’s no way that I could do it now. My last research intensive job was studying the developmental neurobiology of fruit flies. My job was to dissect fruit fly embryos, which is really rare. Very few people ever do this because they’re so small. It was like the Olympics of fine motor skills and I have lost those fine motor skills. So much of science is not just thinking, it’s actually moving things around type of work. So, I want people to have access, physical access.

Then, I think that I want disabled people to have more support in their problem solving. A lot of times, you’re told you shouldn’t do something because it’s going to be inaccessible. It’s like, then maybe we should all just think a little bit harder and find some solutions. So, I hope that that changes. But I think access is such a huge problem. Even with elections, the percentage of polling sites in Detroit that are accessible, is so low. It’s low across the country and so I think that access affects absolutely everything.

When I think about living in an inaccessible house versus now living in an accessible house, there is such a difference. We’re very privileged to be able to access health care and modifications and wheelchairs and equipment. I see that if other disabled people had the material resources and the support, and society was a little bit more curious and empathetic, we would be in such a better place.

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Would you mind sharing about your disability?

Nicole: I was born with a cleft palate, so I don’t have a uvula. So that’s like, my party trick. Instead of that dangly thingy in the back of your throat, I have a hole. So the back of my mouth didn’t form completely, and then I had tubes, from probably about 6 months to age 18 or 19. They said I was gonna have to have them forever, but I stopped getting ear infections, so they took them out.

But from all those ear infections, I have scar tissue, so I am hard of hearing. I also have a bone growth in my left eardrum. So my left ear has more severe hearing loss, whereas my right is, like, moderate. I have had hearing aids since college, when I was about 20.

Laura: Was that a challenge in school for you?

Nicole: I never thought so. My mom always made sure I sat in front of the class. So, she kind of set it up where I didn’t have to run into thinking about that. I did have this one art teacher that would almost make fun of me for not hearing her. And I was like, “You know, I can’t hear her very well.” She was kind of mean about it. But I loved art and she just wasn’t the nicest person. That’s the only time I really thought about it, until I actually got my hearing aids.

Now, I’m like, “Wow, I can hear the water running three rooms away,” or “I can hear the traffic outside.” But it’s nice because I can take them off and be in a quiet zone as well. When I’m teaching my dance students, and they get kind of rowdy, I just turn my hearing aids down.

Laura: Did your doctors tell you you needed hearing aids?

Nicole: Yes. I had the same ENT from when I was born until about like 21, because I was on Children’s Special Healthcare Services of Michigan, and that ran out by the time I turned 21. The ENT always suggested the hearing aids, but I think the first time they suggested it was when I was in eighth grade. At that point I had glasses, I had braces. I was like, “Mom, I can’t do something else for these middle schoolers to make fun of.”

I thought I’d have to get them before my insurance runs out, because they’re pricey. Now that I have them, they do help. When I tell people that I have them they say they can’t even see them. My first pair were brown to match my hair. These are my second pair that I actually got through the state’s employment offices. It’s a program for people with disabilities to get whatever they need to get a job or keep a job. My other job is theater tech, so I work with lighting and sound and I need hearing aids for that. But once these go bad, I’m not sure what I’m gonna do.

Laura: Would your basic insurance not cover it?

Nicole: I’m not sure, but I was really excited when they ruled that you could do over-the-counter hearing aids. So, I’m hoping as it’s more accessible, it’s also more affordable. The hearing aids I have now are very fancy. They can connect to my Bluetooth.

Laura: How do you know when it’s time for new hearing aids?

Nicole: I have a friend who has a cochlear implant and we have been talking about that. The doctors kind of wait for us to be like, “Hey, these hearing aids that I’ve had for a really long time aren’t doing it anymore. They’re breaking or not charging.” I feel like technology for hearing aids is pretty behind, because there’s not a push for it. It’s like an iPhone. If everybody has one, they’re gonna come up with a new one every six months. It’s gonna keep getting better and better.

Laura: Are there any other coexisting conditions with your disability?

Nicole: Not specifically. I did a lot of speech therapy growing up. Now, though, I am on a new journey. I have an appointment with a rheumatologist in one month. I’m counting down the days because I’m having a lot of joint pain. My doctor left the practice, so I had to get a new one. So, I just went to my husband’s doctor because I knew he took our insurance.

I was nervous because it was my first male doctor ever. I thought, “He’s not going to take me seriously.” Or he might say, “You need to drink water and exercise.” But he ran some blood tests and something showed up on them. So, it’s making me feel better that I’m not just tired or lazy.

The internalized ableism is real. But that’s why I like immersing myself in disability culture and accepting that my body is different from other people’s. Especially being a professional dancer. I love that there are disability dance companies, like Axis in California or Dancing Wheels in Ohio. Danceability, through Detroit Disability Power has really opened my eyes to what dance can be.

I’m even going to take a class through a national organization on teaching students with disabilities, so that I can create a program for my students. I always say, the biggest part of my job is advocating that dance is an art and anybody can dance. The actual teaching of the classes is secondary.

What do you like to do for fun?

Nicole: I feel like I turned all of my hobbies into jobs, haha. For fun, I dance for myself. I try to learn new things. I like painting and drawing. The last thing I actually drew was a self-portrait for Disability Pride Month. I drew myself meshed together with the new disability pride flag. Most of the time I just like sitting on the couch, watching TV with my cat.

What motivates or inspires you?

Nicole: I think because I love dance so much, and I love sharing dance, my motto has always been “Everybody can dance.” So when I’m talking to someone at the grocery store, and I say, “I’m a dance teacher,” they’re like, “Oh, I could never dance.” I’m always just like, “Everybody can dance.”

Laura: Are there artists in your family?

Nicole: I’m married to a musician. He’s a jazz trumpeter. We’ve collaborated once or twice. My parents weren’t really artists or anything. My twin sister is the opposite of me; she’s very science-based. She works with ecology and restoration. It’s really fun when we have stuff that intersects. I’ll be like, “Hey, have you ever thought about the accessibility of this trail that you go on for work?”

I was just part of a performance with one of my dance companies. The theme was water. So our piece was about water pollution. We ended up holding signs at the end, like, Clean Water for Flint. I had her bring her little setup for work and teach people how water works and pollution works. It was really cool. But as far as artists, I’m the only one in my family.

Laura: Does your twin sister have a cleft palate?

Nicole: She was born with one, but it was fixed with one surgery. Hers wasn’t as bad. She hasn’t had any lasting effects. She doesn’t use hearing aids either and doesn’t have glasses.

Sometimes growing up, I would be like, “Mom, like, how come it’s me?” She’s like, “You know, that’s because you can handle it. You can get through it. I don’t think your sister would be able to handle it.”

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Laura: Can you tell me more about your experience with an invisible illness?

Nicole: I’m really glad that the disability community is focusing on not only ableism, but internalized ableism. What I heard growing up was, “Oh, you’re not that disabled. It could be worse.” So, what do you tell the people that you’re referring to? The people that do have it worse? Do you say, “At least you’re not dead?”

Laura: Yes, or the people that say, “Just feel lucky that you’re here.” Like, why? So I can listen to you all talk about me in this way?

Nicole: The more I learn, the more I grow up, the more I am able to grieve that my experience is different, but I also take more pride in who I am. Every part of me, whether I like it or not, makes me me. And I can use it to teach people.

Laura: Yes, because your lived experience is so important, and it can do so much to impact others. Personally, I didn’t have the word “ableism” in my vocabulary until maybe 10 years ago. When was the first time you heard that word?

Nicole: Maybe in the last four or five years? I’m deep into disability culture. I follow disabled influencers. So now I can be proud of my disability.

What change would you like to see for disabled people in the future?

Nicole: I want a world that is built around disability first. I always picture that one image where it’s like the ramp and then the stairs are built around it. Because we are the only minority that anybody can join at any time. Why is it so taboo? People used to just take a disabled person and lock them away, so that other people didn’t see them. People didn’t know disabled people really existed. It was very- out of sight, out of mind.

I remember watching Sesame Street, there was the one kid in the wheelchair, but that wasn’t enough. I want that on a bigger scale where we teach our children, we teach ourselves, we teach our parents, we teach about disability. One of my favorite things is something I see done by the disability influencers I follow. Some of them are wheelchair users, but they’ll stand up and walk. People react like, “Oh my goodness, you’re supposed to be in the wheelchair all the time. Your legs aren’t supposed to work.” There’s different spectrums for all disabilities. Like, I don’t have to use sign language to say I’m hard of hearing or deaf.

I tell my students, “You know your body more than me. If you can’t do this, don’t do it. We’ll find another way.” But yeah, just being able to walk around in an accessible world, where getting a wheelchair replacement isn’t so expensive. And what about captions? Everybody can benefit from reading captions. My hearing friends are like, “Yeah, you know what I really like watching TV with captions.” I’m like, “What’s so different about that? Why can’t we have that in movie theaters?”

Laura: Yeah, why isn’t there closed captioning in movies?

Nicole: There’s these devices you can get, but you have to look down here and they’re not always accurate. That’s frustrating, but that goes along with, like, the more prevalent these things are, the better we can get them. Like, the more brains working on it to make it better.

Laura: Yes and the more visibility we have around disability in general, the more people are going to be aware of it. I feel like we’re kind of in this special group, in this special time. Because looking back to the 70’s, I think people with disabilities were kind of pushed away. The ADA only came out in the 90’s. So, in a way we are the first group of people to lead these lives that we kind of have some control over. It’s kind of revolutionary when you think about it.

Nicole: And even though the ADA is there, it’s not enough. There’s still more work to do.

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I was introduced to Sofia through Laura of A11y News. This conversation focuses on Sofia’s experience of disability, her creative process, and the making of Half a Girl, which is available on all major streaming platforms.

This interview is also distinct in that the portrait featured here is not one I took. While photography is often central to this project, the focus remains on documenting disabled people’s lives and work. In this case, that documentation takes place solely through conversation rather than through my lens.

Would you mind sharing about your disability?

Sofia: I’ve been blind, since my childhood. I wasn’t born blind. I had a benign brain tumor, which crushed my nerve, so that’s why I can’t see. That’s when I was about one and a half, so I can’t remember anything before that, which is good. I never felt like I lost something, you know? I just remember the time after that. I think it was harder for my parents than for me, actually.

Laura: Can you tell me a little bit about growing up without vision in Austria?

Sofia: My parents tried to give me as normal of a life as possible. I went to a normal school with other kids and no special school for blind people. There is one in Austria, but they didn’t think it would be necessary. I had a blind teacher who always was with me and taught me how to read braille for example, and also to use the laptop. She stayed with me through my entire time of school, but also the other teachers really tried their best to make their teaching as accessible for me as they could. It was actually really nice.

What motivates or inspires you?

Sofia: A great motivation for me is my family, my friends. I have a lot of blind friends as well. I have a lot of contact with them, and they motivate me, they inspire me. My friends also like singing and music and sometimes we just jam together. Music, of course, which I think we’ll talk about later, is a great motivation for me, just to express myself, or listen to and draw strength from it.

What do you like to do for fun?

Sofia: Listening to and making music, of course, that’s the obvious thing. I really enjoy listening to audiobooks or podcasts, meeting up or having phone calls with friends.

Laura: Do you have a book that you recommend, or a podcast?

Sofia: English listeners would not be interested because I listen to German podcasts, of course. I’ve also listened to all the Game of Thrones books.

What change would you like to see for disabled people in the future?

Sofia: That’s a good question, I think there’s already a lot happening, you know, but what I always struggled with was connecting to other kids my age, because they weren’t really used to dealing with someone with a disability and weren’t sure how to address it or how to talk to me. I can’t just look at who’s around me, and go to them and start a conversation, and I won’t do it, because I don’t know who I’m talking to. Sometimes it’s hard for kids to just go with it naturally, and not be scared of addressing it, and I think maybe that’s something that parents can help normalize. Like you don’t have to treat people with disabilities different.

Music

Laura: I was so impressed by your ability to be so vulnerable in your music. Especially as a person with a disability, singing about how you want a relationship and how important that is to you as someone who’s had your own set of unique challenges. How do you find the courage to be so vulnerable in your music?

Sofia: I write about different topics, and of course, not every topic I’m writing about is making me vulnerable, I wouldn’t like that either. Yeah, it’s not all about being disabled, either, but I try to pick topics that I have a relation to, and other people might have a relation to. Last year, I was working with a songwriter and he said, why don’t you write a completely personal song about how you were doing in your school time when kids were not really treating you like other kids? And I was like, not a bad idea. But I try to keep a balance between songs like that and songs that are more light-hearted and positive, and then some that just… Yeah. On what I’m… Filling and what I’m feeling when I’m not in a good state and yeah, I try to keep a balance between that.

Laura: I think that would just be so hard to access those deep emotions, like, when the person said, why don’t you write about what if felt like to be disabled and different in school?

Sofia: Yeah, it was a challenge, definitely. At first, I was like, yeah, let me think about it, but the funny thing is, like, as soon as I was back home, I was like, yeah, okay, but actually he’s right, why don’t you just start and try? It really took me long to write that song. Usually, I’m finishing a song if I’m concentrated on it in maybe 2-3 weeks, and that was definitely longer, I think, one and a half months or something.

Also, because I play guitar as my main instrument and I’m studying music right now, so I’ve been learning piano. So I said, okay, why don’t you try to write that song on piano, which didn’t make it easier.

Laura: I’m glad you brought up the guitar, because I was going to ask, when did you first start playing?

Sofia: When I was in primary school. I started with the flute, like most people do and I didn’t like it because I always liked singing, but I couldn’t sing and play the flute. And that actually my parents started to get me into music school, and I learned classical guitar there for a few years and also played in an ensemble. Then I started focusing more on singing, and I thought, like, okay, well, it would be nice to learn chords and accompany myself with guitar while singing, and yeah, that’s why I kind of switched away from playing classical.

Laura: Is anyone in your family musical?

Sofia: No, not really. I don’t know where I have it from. I mean… I don’t know, no, I don’t have any more, like, who’s a great musician or something. I always listen to music, like, a lot, like, basically all day. That’s kind of my safe space, you know, that’s where I go when I’m not feeling good.

Laura: Who are your favorite musicians?

Sofia: I really like a lot of different styles, and also artists. Nico Santos, for example, he’s from Germany, Austrian radios play him really often or Teddy Swims. I’m not writing rock music, but I like to listen to rock, so, the Rasmus, it’s a Finnish rock band. I always like people who get a message across with their songs and if the voice of a singer touches me or moves something in me, then it’s always a good sign.

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Kaje

Dissociative Identity Disorder, Autism, Polyamory and Trans Identity

“I never thought I was going to be a parent. My partner is actually the first mother, and when I met her, Mac was three. The first thing he said to me was, ‘You’re a boy-girl, just like me!’ And I was like, ‘Oh! I love you. I’m going to protect you forever.”

Tarah Holloman

Ehlers-Danlos Syndrome, ADHD and embracing being weird

“Even now, at almost 40, I’m just learning how to be proud of being a Black woman. You know what I mean? I spent so much time trying to fit in with everyone else that it was hard to step into myself. And so, I want people with disabilities to know it’s okay to be different, to not fit into what everyone else thinks is “normal.” And I want other people to realize they likely have a disability too, and just fucking own it. That’s how I feel. Look in the mirror, accept who you are, so you can accept the people around you. Chances are, you have something. Got pain in your elbow? That’s a disability, honey. I’ve got arthritis. You wear glasses? That’s a disability. Have a little third nipple nobody knows about? Like, come on now, everybody’s weird.”

Jessica Mae Dixon

Cerebral Palsy and humor

Gina DeShong

Stroke Survivor, Asthma and being a hometown girl

“I want people to see our abilities, not just our disabilities. Don’t see my cane, see me.”

Beshanaakwad

Spina Bifida and Native Identity

“I’ve worked in the Native community for a long time too. When I lived in Minnesota, I worked around systemic issues, policy, and public health. But right now, I’m happy doing what I’m doing. I’ve never worked exclusively in or for the disability community before. I’m even learning new things about disability. Working for the Disability Network, I had to learn all the language and issues around disability.”

Amy Sundin Unger

hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS)

“People don’t realize how varied disability can be. It changes from day to day. Disability can happen to anyone at any time. If you live long enough, chances are you’ll be disabled at some point.”

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Would you mind telling me about your disability?

Miri: I have been chronically ill since I was an infant with a severe form of atopic dermatitis, or eczema. A lot of people have mild versions of it and tend to grow out of it. I had a lot of allergies and food intolerances throughout my life, and I still do, related to it. In the last few years, I’ve been going through something called Topical Steroid Withdrawal, which is not something that is really recognized by the mainstream medical establishment. It’s a result of using topical steroids, which is the first thing that they prescribe for a lot of things related to your skin, not just atopic dermatitis. So that is manifesting as a way more severe form of what I’ve been going through for my whole life.

My mom is a nurse and she was always very, very against me using topical steroids. When I turned 18, I was able to make my own medical decisions. The doctor had always been like, you should try it, you should try it. I was like, okay, fine; let’s try it. Then, I really started to take inventory of how dependent my body was on it. I was like okay, I should probably start to cut the steroid out, because anytime I didn’t use it, I would really, really suffer. I wanted to wean myself off of it. When everything shut down in 2020, it was kind of a blessing. It was like the perfect opportunity to wean myself off. So I’ve just been kind of recovering very slowly.

It’s a long journey, and I think there’s still a long stretch ahead of me. I try not to put any expectations or timelines on my physical health.

Laura: How does steroid withdrawal make you feel? How can you feel it manifesting in your body?

Miri: There’s a few layers. When I was first going through it, and when it was at its most severe, my thermal regulation was off. My ability to regulate my body’s temperature is still pretty shot, but it was even worse then. My skin from head to toe was flaking off and peeling, and crusting over. So, that also meant I was losing a lot of hair, because the skin wasn’t able to be healthy enough to produce hair growth. So, with all those changes, it really affected me emotionally and mentally and still does.

I’m still working through the agoraphobia that was really, really present in 2021, and the social anxiety. It’s really made me have to grapple with my internalized ableism and face it head on. I found myself not feeling good about myself when I was looking a certain way, which I can’t control. When I was not able to do certain things, especially care tasks, as a woman, a lot of those would affect my sense of self worth and also identity. I realized those were so intertwined with what I conceptualized as what made me a valuable person.

I was kind of grappling with the identity of disability from when I was in undergrad. When I started to need accommodations in school they were like, well, you need to apply and fill out this form and go through this process under the students with Services for Students with Disabilities. So basically, the labor was pushed on to me before I was really ready, which kind of made me grapple with like, am I disabled? Am I not? So, in a way it made me start to have those questions and wonder what my relationship with disability is, but it did so in a very not ideal way.

Laura: I feel like a lot of us are confronted with the disability identity in a way we wouldn’t prefer, but once you accept it, life gets easier.

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Miri: I also have lower back disc problems that herniate now and then. That happened first in high school. There was a period like junior year, when I was like, not able to get up or walk for a week and a half to two weeks. I had to go through really strenuous physical therapy and see a chiropractor and all of that stuff. It’s wild to think back to that time, because even then, I was really unable to conceptualize myself as a disabled person. Even when I was having really limited mobility and chronic pain, which is kind of how a lot of people conceptualize disability, I wasn’t able to see the ways in which disability resonated with my life.

It is better managed now, because I have a better idea of what sorts of things to avoid, like carrying heavy things. I haven’t actually had a flare up with my back thankfully, since like, maybe mid college? So it’s been at least a few years now. In terms of mobility with my skin, when it got really, really painful, at its most severe in 2021, it was hard to join some stuff. That affected my mobility as well, but in a completely different way.

Laura: What do you do for skin pain? Is there anything you can do?

Miri: Cold and heat mostly. There’s honestly not a ton you can do, so it’s hard to find management strategies. I was scouring online and finding groups of folks that were dealing with Topical Steroid Withdrawal, as well. It’s just like a bunch of people that are just exchanging tips and tricks, all imperfect.

What do you do for fun?

Miri: I’m really getting back into reading. It kind of took a back burner while I was in school. I really enjoy bullet journaling. I work mostly remotely, so I find that something really analog, like drawing out a spread or putting stickers on a page is really grounding. I really enjoy singing and dancing, although dancing has not been something I’ve been able to do as much the past few years. It is something that I did enjoy a lot in undergrad and will probably try to incorporate back into my life slowly.

Laura: Have you read anything good lately?

Miri: The book I’m reading right now is called How to Keep House While Drowning.

I first found her on Tik Tok. Her name is Casey Davis, she’s a licensed therapist, and someone that is really open about how difficult it is to do really basic things when you’re disabled, neurodivergent, etc. In the intro of the book she says, maybe you don’t have the time or the energy capacity to read this whole book, so there’s an abridged way to read the book. It’s been really validating to read that it’s okay if things like cooking and keeping house and stuff like that are hard.

What motivates or inspires you?

Miri: Motivation has been an interesting theme in my life the past few years. What inspires me, I think, is other people’s joy. That’s kind of related to how I realized I like being, as someone that works remotely, in spaces that are energizing to work as opposed to really quiet. I think it’s because I derive a lot of energy from other people’s energy. So, I feel inspired by seeing other people experience joy. Especially other disabled people and other people of color. I am really motivated by wanting to live a joyful life, which has been a theme for the past few years, especially after graduating school. When I was a student, I was really internalizing the rhetoric that joyful things take a back burner, because your priority should be school. In post-grad life that has kind of transferred to your priority should be work and that should be the main thing you’re doing and what you’re allocating your energy to. I realized that doesn’t make for a fulfilling or sustainable life. So, I’m inspired by trying to figure out what it is that I can do to live a joyful life. Also, I am a community organizer, and so I want to figure out how to balance organizing, and political work.

What change would you like to see for disabled people in the future?

Miri: I think I would want disabled people to feel worthy, and like a whole person at every point in their life, and for that to really manifest day to day. Something I kind of touched on that I was struggling with was my conception of self worth, when I was not able to do things or show up in certain ways, and that’s still something I grapple with. I know I am definitely not alone in those feelings and that is something internalized by disabled people day to day, which is really hard, right? A lot of that is really tied to us living under capitalism and white supremacy. I want folks to feel empowered to feel like they are worthy, because everyone is. On a grander scale, folks not having to do certain things to be worthy of necessities for survival I think is the long term goal.

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What is your name and disability?

Besh: Native names are structured differently. There is no last name for me, my name is just Beshanaakwad. I go by Besh for short.

I have Spina Bifida. I have partial paralysis from the waist down, it gets worse as it goes down, and my feet are totally paralyzed. I can’t do the things other people do with their feet, like scrunch my toes or move my foot side to side. So, I wear leg braces.

Laura: I used to wear leg braces.

Besh: Did you really?

Laura: I did growing up. I stopped wearing them once I finished growing. Now I’m in knee braces.

Besh: So you get it! Well, I had a bunch of surgeries growing up. To my understanding, it was just until I was done growing, because when you have Spina Bifida, your bones grow weird. If they didn’t go in there about every year as I was growing, I’d be in worse shape than I am now, physically. What they did was go in, break my bones, and reset them with hardware, plates, screws and staples.

Laura: Do you have pain in your back from that?

Besh: No, luckily. I’ve heard of other people with Spina Bifida having issues with pain and stuff, but I’ve been lucky enough never to deal with chronic pain. I feel fortunate because my myelo was really low on my spinal cord. Myelo is what they call the malformation on your spinal cord when you’re born. Since mine was low, the effects of Spina Bifida are relatively minor. I can walk. Others are full-time wheelchair users, some can’t even do that. Their capacity is much different than mine.

The myelo spot is still sensitive to this day. If I accidentally hit it on something, I can feel the pain reverberate out. But other than that, I don’t really deal with pain on an everyday basis.

Pain’s Purpose

Laura: How is walking without feeling in your feet?

Besh: Basically, from my rump down on the backside, I can’t feel anything, including the bottoms of my feet, except for the arches. I actually can’t feel the tops of my feet either. Because I can’t feel my feet, I have to be careful in cold weather or when I’m outside for long periods of time.

When I was a teenager, I was outside snowmobiling all day with my friends. It was like 10 below out, and I was in tennis shoes. I got home and my dad asked, “Where were you?” I told him, “Outside, snowmobiling.” He said, “Take your shoes off, now.” My feet were totally frostbitten. I had water blisters right away and I couldn’t feel it.

That was eye-opening for me. My dad explained that pain serves a purpose in your life, it tells you something’s wrong. So, you really have to be careful. The doctor lectured me too. He said, “You absolutely have to watch your feet. You will have your toes cut off if this happens again.” So, it never happened again.

What brings you joy?

Besh: I play wheelchair basketball, this is my sports chair. [Gestures to the wheelchair he’s sitting in.] I got a grant through the Challenged Athletes Foundation for a new sports chair, and I’m waiting for that. I play through the University of Michigan Ann Arbor Adaptive Sports and Fitness program.

This is my second year with them. I used to play as a kid, and I thought it would be like riding a bike, absolutely not. I couldn’t hit the broad side of a barn when I first started shooting again. Now I’m getting a little better.

Laura: What made you want to get back into it?

Besh: I really enjoyed it as a kid. I think as kids, a lot of us, me included, don’t appreciate things the same way you do as an adult. So, I kind of took it for granted. Then I got busy going to college and felt like it wouldn’t fit in. Now, I wish I had stuck with it, because it’s so enjoyable to me.

Laura: What else do you like to do for fun?

Besh: Besides basketball, I’m active in my Native community. I practice my cultural lifeways, go to ceremonies, and attend powwows. There’s a huge powwow every year on Memorial Day weekend in Dowagiac.

Laura: What do you do here at the Disability Network?

Besh: I work in the Employment Department. I help people find and retain work. I also do something called benefits planning, when people are on Social Security Disability, I counsel them on how their benefits will be impacted by returning to or entering the workforce. There are a lot of rules, regulations, and laws.

Can you tell me about the intersection of disability and Native identity?

Besh: Just like any community, a certain segment of the Native population has disabilities. Mental health issues are also prevalent in Native communities for various reasons, land loss, loss of lifeways, our religion being outlawed, not being able to practice it, ambiguous loss, and generational trauma. It’s pretty common in the Native community to meet people with PTSD, depression, or anxiety.

With my Spina Bifida, I didn’t know what caused it growing up, nobody did, until I was about 22. They found out it’s usually caused by a folate deficiency in utero. But no one else in my family has it.

What motivates or inspires you?

Besh: I guess on an everyday basis, I just try to do the best I can. I’m a little bit of a perfectionist when it comes to my work, I’m hard on myself when I don’t make that basket or whatever. I just try to do good. Then I go to bed and ask myself if I did that.

I work for a nonprofit by design. I could make more money doing other work, but I’m probably going to kick the bucket doing some sort of nonprofit work. I’ve been in for-profit companies before, and I was incredibly unhappy. I just want to live my life with purpose and help society in some way, shape, or form.

I’ve worked in the Native community for a long time too. When I lived in Minnesota, I worked around systemic issues, policy, and public health. But right now, I’m happy doing what I’m doing. I’ve never worked exclusively in or for the disability community before. I’m even learning new things about disability. Working for the Disability Network, I had to learn all the language and issues around disability.

What change would you like to see for disabled people in the future?

Besh: Equal access. There are laws in place, but they’re not implemented well. I’d like to see equal access to employment, housing, medical care, all of it. If we can start there and make that the goal, I think it would change a lot.

Laura: I’m sure you see a lot, since you work firsthand with people trying to get employment.

Besh: I’m gonna swear at the end of this interview, fuck yeah, I see a lot. I’ll give you a concrete example. I see people come to me who, because they don’t understand discrimination laws, and because they’re probably at the lower end of the socioeconomic scale, are discriminated against in the workplace.

Companies like Walmart, Home Depot, and other service industry jobs do this. I know they make a cost-benefit analysis on whether they think you know your rights as a person with a disability. If they think they can get rid of you safely without a lawsuit, they’re gonna fuckin’ do it.

That enrages me. It makes me really mad. People who are just surviving, spending all their time and resources on housing, food, and such, they don’t have the time or energy to pursue a lawsuit. They may not have the know-how to even recognize that their rights have been trampled on.

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When I visited their home, the family’s daily rhythm unfolded across a kitchen and living room turned game room, with long tables and shelves of board games. At lunch, Monica moved easily between conversation and preparing tostadas for her family, calling out each order without breaking stride. We chose a wall in the dining room Monica had painted as our backdrop. It was a small reflection of her care and intention in the home. On the refrigerator hung a piece of paper labeled, “Family Contract.” It was a page of shared goals and responsibilities signed by every member.

What stood out most was how the family framed disability as a source of identity and belonging. Each child carried their disabled identity with confidence, supported by parents who have built a home where difference is celebrated.

What change would you like to see for disabled people in the future?

Monica, 40 - ADHD, Apraxia, Oppositional Defiant Disorder (ODD)

“Who decided that the standard human being is white with 2.5 kids? And that they go to church? Who made that decision? Everybody is different. Even if you put three to ten white guys of the same age in a room, they’re all going to be different. If society embraced the concept of everyone as an individual, disabilities wouldn’t even be something we’d have to talk about. They would just be another part of who we are.”

Chris, 42 - Marfan’s Syndrome, Stroke Survivor

“I’d like to see more understanding and compassion for disabled people. Not just compassion, but compassion from a place that is more connective. Normal compassion is not enough. Putting in a ramp because it’s required is good, but adding one when it’s not required is even better.”

Romina, 20 - Autism, ADHD

“I want disabled people to have more opportunities to have fun and connect with others around the world who are like them.”

Daniel, 19 - Autism, ADHD, Oppositional Defiant Disorder (ODD)

“I’d like to see more assertiveness, for both us, the disabled, and for others toward us, because most people tend to look at the disabled with disdain. Eventually, those disabled individuals start to feel like they’re the problem, but they’re not. No disabled person ever is. Those early moments in life not only shape who you are but also establish the foundation of your life. If most of those moments are spent with others looking down on you or being upset with you, it weakens that foundation. However, if you’re praised, acknowledged, and feel happy about yourself, that’s when the foundation is strong and can stand the test of time.”

Alessandra, 17 - Generalized Anxiety Disorder (GAD), Social Anxiety Disorder

“I want people to understand that just because we have disabilities doesn’t mean we can’t do everything everyone else can. It’s just a little bit harder and takes a little bit more work. But we can all do the same things. It’s like when they used to believe women couldn’t do everything men could. It’s just like that.”

Tia, 15 - ADHD

“I would like to see more people helping disabled people and understanding them better. That would be really great.”

Letta, 13 - ADHD

“I want there to be more services to better support disabled people. Like, more schools designed for them, that would be important. There aren’t many schools, like high schools, colleges, middle schools, or elementary schools for them. I’d also like to see better ways for them to be cared for. Other things, like sound blockers, would be helpful because I know a lot of people who struggle with that issue.”

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Father Time’s story reflects the genuine highs and lows of a life with a disability. Check out the conclusion of this vulnerable and inspiring story.

Content Note: This interview includes discussion of suicide, cancer, and other traumatic events. Please take care while reading.

What motivates or inspires you?

Father Time: God.

I’ve had two rounds of cancer. I had prostate cancer five years ago. I've had, not because of me, four or five really serious accidents. And just everything else, and the blindness. You know, it’s just been a lot.

I tried to kill myself at one time. That was some years ago. Had a lot to do with the blindness and everything else that was going on. And I don't know, I just always give credit to God for bringing me through.

I was talking to a guy one day and I said, “Man, I get so tired of this, you know, it just wears me out.” And I say this all about the accidents, the cancers, the strokes. He looked at me and said, “You know, if all that stuff never happened to you, you wouldn't be Father Time.”

So I just shut up. You know, it's been intense for me at times. Like I said, because of God and my sense of humor, I make it through. I told one person once, I said, “You can find life and you can find life with a cow patty.” You know what that is, right?

Laura: No, I don’t.

Father Time: A cow patty is poop.

Laura: Haha, okay.

Father Time: And he said, “Well, why is that?” I said, “The cow patty looks like poop. It is something worthless, right? Pick it up, you know, with a stick, and you find life. Look under.”

Laura: Yeah, it's true.

Father Time: So I said, “You can find something good in anything, but you have to look for it.” You know? Because you know it’s like that with life, there's so many things going on now.

You can focus so much on all the peripherals that you forget about the big things. When you focus on those things that is important to you, life not that bad anymore, because now you set goals for yourself. And as you reach that goal, you don't stop there. You reach that other goal, you keep moving. Now, when you look back, you say, “I've left all these other people behind. I’m happy with my life.”

I've tried to instill that in other people, and I try to keep it in me. And at times I do get down. I start talking and somebody say something to me, and I go, “Okay.”

Laura: I think you highlighted something important, which is a sense of purpose for people. Everyone, of course, needs a sense of purpose, but especially when you're disabled. It is easy to get lost in cycles of, “Why me?” and “This is so hard,” and you just don't want to do it.

Father Time: You know someone said, “You know you can sit down if you feel like it, don’t you?” I said, “What do you mean?” He said, “First of all, you know, you're blind.” I said, “Yeah, and?” He said, “You’ve had strokes, you’ve had cancer. So you can use any one of those excuses not to do anything.” I never thought about it before. So I thought about it, and I decided, that’s not for me, that's an excuse.

Survival and second chances

Father Time: One time, I tried to kill myself. It was bad, it was real bad.

It was at one point in my life where I'd always thought that I was the reason for things going bad. And it just got to me. So I prepared.

I had already taken pills and had another handful. I was at work and I said, Lord, either somebody's going to have to stop me, or I'll see the day.

Then I hear the foreman going, “Napier, Napier, get that next job.” So, I went over to the water fountain, put all the pills in my mouth and a hand came in front of me. I said, “God?” It was a friend of mine. He said, “What are you doing?” I said, “What are you doing here?” And he said, “I don't know. Someone told me to come over and check on you.” I said, “I'm done.”

He opened my hand and grabbed the pills. Next thing I know, he was taking me down to the nurse at the shop. He said, “You better not go to sleep. Don’t you dare go to sleep.”

He rode with me to the hospital. I don't remember nothing else after that. When I woke up the next day, I said, “God, I can’t even kill myself right.”

Laura: Wow. What's your takeaway from it?

Father Time: You know, I found out all these people cared about me. Similar to when I found out about this last bout of cancer.

I was at the doctor’s office, he says, “You got prostate cancer.” And you know, I'm thinking, “Oh man, here we go again.” I was like, “Geesh, I don't want to deal with this stuff. I really don't.”

Laura: I get that.

Father Time: The doctor told me all the stuff you got to do about the radiation and the surgeries, and they told me the worst part of it, too. So I said, “I'm gonna ride this out. If I got a year fine, if I got you know, 10 years. I'm just, I don't care. I'm not gonna get all the treatments and stuff.” So I talked to my trainer, and he didn't want to hear that stuff, because he's like my son. And he said, “Well, I don't want you to do that. It will be tough.” But I thought, no, I’m done.

I was a heavyweight champion and at my next match, I went to the ring and I took the belt off. This was legit, you know? So, I set the belt down in the middle of the ring. I said, “I'm quitting tonight.” And the crowd, they was like, “We love you.”

And I'm listening to them, and I'm like, “Wow.” You know, I couldn't believe it. And they were like, “We don’t want you to leave.” There was just so much going on, and I was listening to what they were saying, and I said, shoot. I’m gonna kick the butt of this thing.

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Laura: So did you do the radiation?

Father Time: No, I was scared of that. A lot of times, if you do radiation, you can't get surgery. Because the radiation, it kind of fuses the prostate with other stuff.

Laura: I didn’t know that.

Father Time: So, I chose to do the surgery and robotic surgery. Which is really neat, you know? They go in and do everything. So this way, if it came back for some reason. I still have the option of the surgery.

And a friend of mine, he took the radiation and he had to go back. So I was blessed. This is the fifth year cancer free.

Laura: Congratulations.

Father Time: Thank you. So nothing's come back. I’m healthy. After the physical therapy and after the surgery, I’m getting my strength back now.

The physical therapist, she put me on this leg curls/ leg extension machine. She had like 20 pounds on there, and she said, “Do 15 reps.” I said, “Sure.” After about the 10th one, I'm thinking, oh my God. This is crazy. I'm so weak. So she said, “Fifteen more.” And if it weren't for my male pride, I would have given up.

But we've become really good friends, her name is Lisa. She actually came out to the gym to watch me train. She made special exercises to strengthen me in the ring.

Laura: That's awesome. Cheers to Lisa. That's what I would want out of my physical therapist.

Father Time: Yeah, we became really good friends. So, you know, there’s so many positive things that have come out of this. Dr. Weisner too, I got his phone number. We call, we chat.

Laura: Hey, you’re like a VIP if you get a doctor's phone number.

Father Time: I know a lot of this is being blessed, because I always give honor to God because of it. And because of what I do, like the wrestling, and the information on the internet, I get treatment in the hospital most people my age don't get.

Laura: That's awesome.

Father Time: It really is. I pulled up this [Father Time shows his large bicep]. It was about 18 and a half inches. So the doctor said, “Most people your age, we’ll just let it heal. But I'm going to put you in physical therapy and ask them to take care of it.” Normally, that wouldn't happen. The treatment I get, it's just so different. They treated me as I was if I was younger, because I was so busy.

Laura: That’s great. It shows that if you respect yourself and take care of yourself, other people will respect you.

Father Time: They really will. It makes a difference.

Wrestling through panic and pain

Father Time: One night, I almost walked away from wrestling. We had a show down in Holland, Michigan, and I had a panic attack.

Laura: Really?

Father Time: Yeah, it was just the way things were going that week. Normally, I can kind of shake it off, but this time they changed the venue of the match. I’m thinking, “Oh God. I gotta figure this thing out.” I got in the venue, and it was darker than normal. We got in the ring, and it was horrible. And I said, “This is it. I'm gone. I can't see in the ring.”

So, I go downstairs and see the guy that I was supposed to be working with, he said everything was messed up. And I'm right on the verge, I'm like, “I just, I don't want to do this.” It really got to me. I kind of broke down.

He said, “What are you gonna do?” I said, “I'll be alright, you know, but this is hard’. He said, “We won’t have the match. We’ll go home.” And I went, “Wait a minute. No man.” I said, “I ain't going down like that.” You know? I said, “We're gonna have the match.” Even though all everything inside of me was saying, “Run.”

But then I thought about all the people that I have encouraged, that Father Time has encouraged. I said to myself, “What would that look like for me to quit?” And this friend of mine, he prayed for me. Ten minutes later, I started shaking it off. We kicked butt that night.

Laura: That's awesome. You really rallied, it sounds like.

Father Time: I think it's because of all the adversities that I went through over the years. I can get emotional thinking about it.

What do you like to do for fun?

Father Time: I enjoy wrestling, I really do. I also like the preaching part. And the wrestling has helped me with my preaching and the preaching has helped with my wrestling. Because like being blind, you live in this type of area…you know?

So in wrestling you're here, you're larger than life. Before in my preaching, I was always in this little area. But now, since I started wrestling, I'm more out when I preach, you know? When I'm expressing certain things, I interact with the congregation like I interact with the crowd, you know? It's just different. So it has helped both of them.

Both of them is fun. One is more meaningful than the other. But what I found out is that when I'm speaking at wrestling, it sounds like I’m preaching. Even a teacher at one of my matches came up and said, “Were you preaching out there?”

So, I like to be able to touch people. I like to be able to make people feel good. If you’d have looked down when I came in here, I'd have said something that would get you laughing.

Laura: Yeah, that's a special skill.

Father Time: I also don't want you to bring me down. Lemme enjoy this moment, you know?

What change would you like to see for disabled people?

Father Time: Acceptance.

You know, disabled people can do anything anybody else does. The only difference is we have to be trained. We have to have certain accommodations. If they can meet those requirements, we could sit and do anything. You know, especially with what's going on now.

There's a lady that teaches photography, but she’s blind, believe it or not. There’s blind carpenters, blind mechanics. There's a lawyer. There was a blind judge that was up here one time. So accepting us and being able to accommodate disabled people. Don't look at us like there's something wrong with us.

Laura: I would think a blind person probably knows how to do something better than a seeing person would, because you go about things in a different way. Like a mechanic putting an engine together probably knows that engine more intimately than a seeing person.

Father Time: Yeah, because he knows what it looks like in his mind. He feels it, he touches it. He knows how this part moves. You know, it's like a surgeon. If you look at a surgeon and he's trying to find a tumor or a bullet, he's feeling with his fingers in the organ, or in the intestines.

When Reagan got shot, and one of the bullets was in his lungs, they kept putting the x-ray up, the surgeon could see it on an x-ray, but he felt with his fingers to get it. So even if a person is blind, once he knows the anatomy it's there in his head.

It's like me. If you see me in a ring, my eyes are often closed, because I know where the ropes are. I know where my opponent is.

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Would you mind sharing about your disability?

Father Time: I have retinitis pigmentosa (RP). I’m legally blind. It’s degenerative, destroys the rods and cones in your eyes. You lose your peripheral vision. So everything starts to narrow down because of the pigment that grows on the back of the eye around the optic nerve. There are some genetic treatments, but it depends on which one you have. I have one that can’t be fixed.

Laura: Were you born sighted?

Father Time: Yeah. I call it a generational disease. The only blind relative I could find was one of my aunties and she was like, 90-some odd years old. So, I don't know if she was blind because of being so old or because of retinitis.

I remember the first time I was diagnosed. I was probably in first grade. My grandfather worked construction, so I was able to go to a pretty decent ophthalmologist. The first time they looked at it they said: “Your grandson is going to go blind.” And I heard my grandmother screaming and yelling. She didn’t take it too well. Back then, folks thought RP was a “white disease.”

You know, going blind and being born blind is different, because until someone says you're blind, you don't know. But when you are going blind, you’re dealing with a lot of other problems. A lot of it is mental. Not being able to do something that you were doing before, even just putting something together. I've always been good with my hands. I used to be able to put something together in 10 minutes. Now it takes me 30.

Growing up, I just thought I was clumsy. Always bumpin’ stuff, trippin’. Then, when I was 18, the doctor gave me a name for it and explained I was slowly losing my vision due to RP, and I got happy. I finally knew. I wasn’t dumb, I just couldn’t see. That made it more acceptable.

Laura: That relief of having a name for it.

Father Time: Exactly. It even worked as a pickup line. “I can’t see well, can you help me?”

Laura: Wow, you’ve really made this work for you.

Father Time: You know, a lot of it is because of my humor. But I tell you it has truly not been easy. It really hasn't.

Facing discrimination in the workplace

Father Time: I worked for General Motors. There were certain jobs that I could do and could not do because of my vision. Because I was so active, they thought I was just a screw off, they didn’t pay any mind to the fact that I was going blind, and it caused me a lot of problems in the shop. I kept telling one foreman, “I cannot do this job because I can't see to do the job.”

He actually said to me, “You know, I tell my children what to do, and they listen, but when I tell you, you won't.” He was implying I was a child. I had a lot of problems with him. Once, he gave me a direct order to drive a vehicle after final assembly. I told him, “I cannot drive, it’s too congested here for me to drive right now.” He said, “I'm giving you a direct order.” And I said to my coworkers, “Y'all heard me tell him why I could not drive?” They shook their heads and said, “Yes.” Foreman said, “When you get a direct order, you gotta go.” So I drove and within about 20 minutes, I got hit head-on.

Laura: Were you okay?

Father Time: I was okay. I got 30 days off with pay because they didn't want to have to fire the foreman. And it came off my record in 30 days.

Laura: What year was this?

Father Time: That was probably back in the 80s, before the Americans with Disabilities Act.

And that's another thing, if you're in a wheelchair, if your arm is missing, people accept you more, because they can see it. When a person is blind and people see them moving, they don’t realize what the white cane means.

Finding purpose

Laura: So how’d wrestling come in?

Father Time: About eleven years back. I became the oldest starting pro wrestler. WWE even put me in their books. Met Chris Jericho and the whole gang.

Laura: That’s incredible.

Father Time: It changed my life. I grew up with a lot of abuse, a lot of drinking and drugs. I've lost uncles and aunties to drugs and jumping out windows and stuff because of the drugs. As I got older, I was feeling like I was the cause of the problems, including the blindness too. I always felt like I was a kid that, you know, if it said ‘boneless chicken’, I always got the bone.

I used to really think God hated me. Because in Leviticus it said that, “He accepts anything except for something that’s crippled, blind, spotted.”

Laura: Does it say that in the Bible?

Father Time: Yes, because with animal sacrifices, it had to be perfect, because you were supposed to give God your best. It says, “God loves who He loves, hates who He hates." When I read that, I said, “He hates me.”

Laura: How could you not internalize that?

Father Time: Yeah, you know. So I was pouting one day and I got quiet. I heard God say, “If these things had not happened to you, you wouldn't be able to do what you're doing or what you're going to do.” And that took the burden off of me.

I didn't like it. But from that point on, because of the things that I had gone through, I was able to speak to people. Then over the years, I started counseling people, emerging as a minister. It seemed like everything I had been through was something someone else could relate to. So when I started pro wrestling, we started going out to schools and I became a motivational speaker. I could not believe how intensely the kids were listening. Especially with the bullying. I was bullied a lot coming up. It was horrible. It really was. I described my experience, waiting for 3 o’clock on Friday so I could get to Saturday- Freedom Day as I called it. You could see the kids, you know, tearing up and stuff.

And so it was just different things like that, that I went through that I was able to talk to kids about. It’s just so crazy how life happens.

Stay tuned for Part 2 where he shares how faith pulled him through and why he believes disabled people can do anything.

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Alt Text: Portrait of Amy, a white-skinned woman with short light brown hair. She is wearing a short-sleeved black t-shirt and purple pants. She has arm tattoos, finger splints and is posing with a purple cane.

Would you mind sharing about your disability?

Amy:
I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), and I also have POTS (Postural Orthostatic Tachycardia Syndrome). I’m still waiting for my medication to fully kick in.

Laura:
There’s a medication for POTS? I didn’t know that.

Amy:
Yeah! I saw Dr. Grubb, down in Toledo, he runs a dysautonomia clinic. It took me a while to find the right place, but they actually have some treatments that help. I’m on Corlanor now. It changed my life. My fatigue was gone in two days. I couldn’t believe it. I’m hoping it keeps working.

Laura:
When were you diagnosed with Ehlers-Danlos?

Amy:
One or two years ago. It was a long road. It’s incredibly hard to get diagnosed because so few providers understand it. Luckily, I had a primary care physician who was willing to go down that road with me. I went through several specialists and eventually got to the Beaumont Adult Genetics Clinic.

Geneticists in Michigan usually won’t see people with hEDS unless they suspect a more severe form, like vascular or classical EDS, because there’s no known genetic marker for hypermobile type. My connective tissue panel didn’t show anything definitive, so they relied on family history and symptomatology.

Laura:
Was it a relief to finally get the diagnosis?

Amy:
Huge relief. It let me move forward and start figuring out treatment.

Laura:
How did you first suspect you had EDS?

Amy:
Joint pain. Lots of it. I already knew I was hypermobile, it’s obvious. I’m a nine on the Beighton scale. My physical therapist said I have some of the bendiest elbows she’s ever seen, and she specializes in hypermobility. So I was flattered.

She was key to me getting diagnosed. She documented everything and encouraged me to keep pushing. I wasn’t sure if my symptoms were “severe enough,” and she was like… yeah, maybe follow up on that.

Alt Text: Full frame portrait of Amy, a white-skinned woman with short light brown hair. She is wearing a short-sleeved black t-shirt and purple pants and floral printed shoes. She has arm tattoos, finger splints and is posing with a purple cane.

Living with POTS

Laura:
How did you start to suspect you had POTS?

Amy:
I was getting short of breath and dizzy just from standing. My smartwatch started giving me clues, like my heart rate would spike when I stood up. I’ve had exercise intolerance since I was a kid. I was athletic, but only to a point. I also had light sensitivity, nausea, GI issues… the whole dysautonomia checklist.

Also, I failed my tilt-table test, though not in the POTS way. I failed it from a vasovagal response. My blood pressure just tanked and I passed out. I wasn’t too worried though. They had the IV ready and everything. I came to pretty quickly.

I was officially diagnosed at the dysautonomia clinic, they did a simple “poor man’s POTS test.” They took my seated heart rate, had me stand, and it immediately jumped to 130. They were like, “Yep, congrats!”

The doctor there is Dr. Blair P. Grubb. He’s published research on POTS. He has a long waitlist, but the Physicians Assistant, Beverly, got me in within a few months, and she’s great. The whole team is amazing. They handle out-of-state care and coordinate everything. If I need labs, they send the orders and I get it done locally.

My insurance covered Corlanor. It’s still a brand-name drug, and some people have trouble getting it, but I got lucky. They even had a copay card to bring the cost down to $20.

Laura:
It’s amazing what a difference the right care can make.

Amy:
It really is. I didn’t realize how bad the fatigue was until it lifted. Fatigue feels like it lives in your soul. Now I just get normal-tired. I can come home from work, go to the store, cook dinner. It’s like, wow.

What do you like to do for fun?

Amy:
I still do athletics. I do seated archery at Rising Phoenix in Troy. I shoot Olympic recurve style, it's a big fancy bow, lots of gear. I also curl at the Detroit Curling Club. I actually look able-bodied when I curl. But I wear braces, use KT tape, and my cane becomes my broom, literally. It’s my third point of contact on the ice for balance. I still have to prep with Advil and be careful. I’ve had to modify my delivery because of hip issues. Melissa and Stan are happy I’m staying active.

I also make quilts! I have to take breaks, wear ring splints, and use an ergonomic rotary cutter. I recently made a zebra-themed quilt, zebras are the EDS mascot. One of my quilts was randomly generated. I rolled dice to pick colors and block orientation. It turned out great.

I’ve also been connecting more with the disabled community online. There’s this lingerie brand called Liberare that makes adaptive bras. They started a small social network for disabled people, anyone can join, even if they self-identify. It’s a great place to talk to people who just get it.

They hire disabled models and actually listen to feedback. They re-released a bra design based on community input. It’s legit.

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Alt Text: Close up shot of Amy’s hands resting on her purple cane.

What motivates or inspires you?

Amy:
That’s a tough one. I’m not a big “five-year plan” person. But lately, connecting with other disabled people, mostly online, has kept me going. Just knowing I’m not alone. Being able to say, “I’m not up for going out today,” and have people understand.

Laura:
It makes such a difference. Are you the only one in your family with EDS?

Amy:
I’m the only one diagnosed, but my mom shows a lot of signs. When we did the Beighton test together, I was like, “Yeah, you definitely have this.” She’s in another state, but there’s a specialist near her if she ever wants to pursue it.

What change would you like to see for people with disabilities in the future?

Amy:
Access. Plain and simple. The logistics of going anywhere can be exhausting. Will there be a ramp? Is the elevator broken? Is there an accessible bathroom? Even the building I work in has an “accessible” bathroom, at the top of three flights of stairs. It’s ridiculous.

Also, people don’t realize how varied disability can be. It changes from day to day. Disability can happen to anyone at any time. If you live long enough, chances are you’ll be disabled at some point.

Laura:
Yeah, you’re going to be glad this stuff is in place for you someday.

Amy:
Exactly. Accessibility helps everyone. Very few able-bodied 90-year-olds out there.

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Would you mind sharing about your disability?

Kaje:
A couple of years ago I was diagnosed with DID.

Laura:
What is DID?

Kaje:
Dissociative Identity Disorder. I have polyfragmented DID, so it's many parts, and some of my parts have sub-parts. I grew up not knowing I had this. I also grew up not knowing I had autism. Being autistic and living in the world without knowing is so confusing. But, being diagnosed with DID was like a game-changer. It gave me the ability to see who I was and to make sense of everything. However, it took me up until recently to actually believe that I had it.

I was diagnosed with autism, ADHD, OCD, PTSD, all of the myriad of things a year before getting my DID diagnosis. My therapist thinks that it’s not necessarily all those other things. He says, “I don’t think you have ADHD-I think it’s your parts.” Which is hard to piece out. Everything overlaps in such a big way. I’m like, is this being autistic? Is this OCD? Is this DID?

For example, one of my parts is Jax, and he’s five. He’s really into stuffies and having a collection of them. I think that’s more attributed to the part of Jax rather than me being autistic. It’s nuanced and very layered. For a long time, I was just like, “Well, I’m just weird. There’s no explanation for it.” And that’s fine. But being able to think about which part brings what to the table has been really helpful in understanding myself.

But there are parts I have yet to meet. I know they exist because I’ve seen them, but I haven’t actually interacted with them. They’ve been in the background, hiding behind things. And I’m like, “Cool, you’re another one, I’ll add that to my list.”

Laura:
Is there a little fear when you know there’s another part hanging out that you’ll have to meet someday?

Kaje:
Yes. Mostly because I’m like, “What do you hold? What are you? A protector? Do you manage things? Do you put out fires? Are you an exile who holds trauma? Which thing are you?” And I don’t know until they come forth and feel comfortable enough with me. It’s very much about getting trust and hoping that I can help them understand that it’s today, it’s not back when we were 13 or whatever age they’re stuck in.

Laura:
Are there times when a part completely takes over?

Kaje:
Absolutely. I’ve had a lot of amnesia. Things will happen that I don’t remember. Somebody will come up to me and be like, “Oh hey, Skyler, it’s nice to see you again,” and I’m like, ”That's not my name.” So it’s been very jarring. But it's gotten better since my diagnosis.

Laura:
Have there been long periods of disconnection from certain parts?

Kaje:
Definitely. Like when I broke my leg and was on pain meds, a different part took over to manage all that. That lasted about five years. I don’t remember much from that time. I did things I wish I hadn’t, but I don’t have memory of them. That memory is somewhere else. I haven’t seen that part since then.

Also, my eyes change color. When my eyes change, I know someone else is present. Normally, they’re steel gray. But they’ll change to green or hazel. There’s a yellow ring that gets really bright or dim. When one part is fronting for a while, my eyes stay one color. When we’re switching rapidly, they might be three different colors in one day. It’s really interesting.

Managing Relationships

Laura:
How is it managing your relationships and all of these other parts of you?

Kaje:
It's been very hard. I've been with my one partner for 13 years, and through that 13 years, she has seen multiple different parts of me. There would be times when we would get into arguments and she would be like, “I don't know you.” That would trigger me to switch parts, and then somebody else would come out. I wouldn't remember the conversation. It wouldn't make sense. She felt like I wasn't really present, because I wasn't. And when the diagnosis happened, she was like, “This makes so much more sense.”

Managing relationships with DID is very hard. I have all of the relationships inside of me that I have to manage, and then I have the relationship with my partner, a relationship with my kid, then I have friends, and I have my other partners.

Everyone has to know about my DID, so they understand this is a choice they're making. I don't get the choice, but they do. I want them to be fully aware of what they're choosing, because it needs to be intentional. If I'm working hard at it, they also need to be working hard to understand my perspective.

It makes it very tedious and intricate, but also very worthwhile. I can see that almost everybody has parts. I can see different parts of other people, and if I get activated and a part comes out because of their angry part, I can slow down, put myself into a different state, and realize that they’re hurt. There’s something underlying there. I can actually slow it down and not be so activated.

Etiology & Treatment

Laura:
Is DID hereditary?

Kaje:
I know it comes from trauma, but I think it can be passed down in the way that generational trauma is passed down. I don't want to pass it on to my kid, so I worked to break that generational trauma, because I was very worried about treating my kid the way that I was treated. I feel like maybe my mom had something similar, because there were just times when I was like, “Who are you?”, but we didn't have the language for it then.

Laura:
What is the treatment for DID?

Kaje:
My treatment is therapy. I do have medication. There are no medications for DID specifically, but there are medications to treat symptoms like anxiety. I have a lot of anxiety and a hard time leaving the house.

DID isolates you a lot, and there's so many fears around different things, because it's all relational trauma. So the way that I relate to people is different, because I'm afraid they're gonna hurt me in the same way that has already happened. So it's a lot of putting myself in situations that are showing me, in all my parts, that it's safe as an adult now, even if it's not safe. I learn I can remove myself from a situation. I can handle it. It's like exposure therapy. Inadvertently, being polyamorous makes it really easy to practice treatment, because I'm working on relational trauma constantly, by developing relationships, maintaining them and managing them. It's been wild and quite a learning curve.

What do you like to do for fun?

Kaje:
I love to do a lot of things. I volunteer at the dog shelter, that’s a lot of fun for me, and it helps with the DID. It proves that we’re safe, that we can handle situations. It’s very grounding because you have to be present. We’re here paying attention to these dogs because they’re scared too. So it works on their relational trauma, and we have a way to connect, which is really cool.

I love to hike. I love kayaking. Being outside is one of my favorite things. I love to read and write poetry. I’m a big fan of experiencing new things. I garden too. I love learning. Learning is a huge thing. I don’t understand why people don’t want knowledge. There’s so much knowledge to be had. I’m just like, “What else can I learn?” That’s definitely a big one. And then always learning more about DID—that’s something I do for fun, I guess. I do it because I want to know more. It’s enjoyable for me.

Laura:
Have you met other people with DID?

Kaje:
I have an online support group that I’m in. It’s a network I can talk to people through. I haven’t met anyone in person—oh wait, no, that’s a lie. My therapist!

Sometimes we’ll trigger each other, and we’ll be switching at the same time, and we’re both like, “Oh, we’re sleepy. Let’s get up and move and re-ground ourselves.” It’s really, really good to feel like, okay, you get it. I don’t have to explain stuff constantly. He just understands.

Barriers to Access

Laura:
What are some barriers to access for you and your diagnoses?

Kaje:
Transportation is a huge part. Especially here in Detroit, transit is wild and erratic and not convenient.

I feel really fortunate that right now I live right off a bus route that is mostly on time and pretty regular. I can catch a bus every half hour and know I can get downtown for appointments or go pick up my kid. But most of the transportation here is a nightmare.

Laura:
You really need a car to get around Detroit.

Kaje:
Since my diagnosis, I’ve been driving less because I’ve been noticing switches when I drive. It kind of freaks me out, especially when there are other people in the car. I’m like, I can’t do this right now. Somebody else has to drive. So transit would help in a number of ways.

What motivates or inspires you?

Kaje:
Absolutely my kid. He just turned 17 at the beginning of this month. He just did his first testosterone shot yesterday, all by himself. Watching him go from being absolutely terrified of needles to being able to just do it, I was like, wow. That was faster than when I did my first shot. Mine took like three hours before I even got close.

I never thought I was going to be a parent. My partner is actually the first mother, and when I met her, Mac was three. The first thing he said to me was, “You’re a boy-girl, just like me!” And I was like, “Oh! I love you. I’m going to protect you forever.”

And he’s always been the reason I aspired to be better, and to learn more. He would ask questions, and I’d say, “You know, I don’t know the answer, but let’s find out together.” He’s a huge motivation for me.

What change would you like to see for disabled people in the future?

Kaje:
Man. More visibility. More just general conversations around it. Absolutely more accessibility. The way that people are talking now and actually thinking about the world is better than what it was. I think the pandemic helped with that. As bad as it was, I think a lot of people getting sick and being like, “I have long COVID, what do I do now?” and being stuck with those questions, they’re now asking, “How do I make this more accessible for myself and others?”

They’re seeing that disability is almost inevitable. Everybody grows old. We’re all gonna need accessibility, so we might as well have it now, instead of waiting until it’s too late.

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Discussing Disability

Gina: A little over a year ago, I had a stroke. So now, I sometimes use a cane, but I’m getting better. I also have high blood pressure, diabetes, and asthma, which can be pretty debilitating at times.

Laura: Have you had asthma your whole life?

Gina: No, I developed it in my 20s from smoke inhalation.

Laura: Was it from being around smokers, or was there something else?

Gina: I was working in a restaurant, and the kitchen ventilation broke. We didn’t realize it right away, and I just started making a weird noise. I didn’t know why until my mom said, "I think you’re having an asthma attack." So we went to the hospital, and sure enough. It’s been years now, and I manage it pretty well. But I cannot be around smoke or even popcorn—popcorn is my biggest trigger. If I go to the movies, my friends have to check the air quality first.

Laura: That sounds frustrating. When you do have an asthma attack, do you need to go to the hospital, or do you manage it at home?

Gina: I have a nebulizer and rescue inhalers. These days, I rarely need medical help because I know how to handle it.

What do you do for fun?

Gina: My favorite things are reading and traveling. Most of my siblings live in Columbus, Ohio, so I love visiting and spending time with them.

Laura: Has using a cane affected your ability to travel?

Gina: Not really. In fact, I think people are kinder when they see the cane. I get a lot of "Do you want to sit here?" and "Are you okay?" I’m very independent, but I do think people are more considerate.

Laura: I’ve noticed that when I use a mobility aid, too. People suddenly see you more.

Gina: Exactly. They want to help, they want to make sure you’re okay.

Laura: Do you have a favorite travel destination?

Gina: Jamaica. I’d love to go back. The people, the island—it was all just wonderful.

What motivates or inspires you?

Gina: I think it comes from the way I was raised. My parents and grandparents always said, "Just keep trying, keep pushing. Whatever you do, do it with excellence." And being a Black woman, plus always being a big girl, my mom used to say, "You have to do better because people will judge you differently." That stuck with me. I also wake up every day and pray, "Let me be a blessing to someone today." That’s what keeps me going—knowing that people depend on me. I have the biggest team here, and I can’t fall apart because they need me.

Laura: You have quite the leadership role here. It sounds like your upbringing prepared you for it. Are you from Michigan originally?

Gina: Yep, born and raised. I live in the house I grew up in, just outside of Flint in Mount Morris. But I’m from Flint, went to Beecher High School. Have you heard of it?

Laura: I’m from Chicago, so I’m not familiar with Beecher High.

Gina: It’s a close-knit community. I was at a meeting this week, and when someone heard I was from Beecher, she said, "Bucks for life!" That’s what we always say.

Laura: That’s awesome. Do a lot of the people you grew up with still live in the area?

Gina: Yeah, a lot of us came back.

Laura: That says a lot about the place. How did you end up working at the Disability Network?

Gina: I used to work at Michigan Rehabilitation Services as a job developer, teaching job skills classes. Luke, my boss now, used to come to meetings there. One day, he sat in on one of my classes, and afterward, he came up to me and said, "I need you to come work for me." And that’s how I got here.

Laura: Do you miss teaching classes?

Gina: No.

Laura: Haha, fair. Do you feel like leadership is where you thrive?

Gina: Yeah. I’m a take-charge kind of person. I don’t know if that’s good or bad, but it’s who I am.

Laura: I think people need that. So, you mentioned you love reading. What do you like to read?

Gina: Urban fantasy is my favorite genre. I also love mysteries. And I love book series. I like getting to know the characters and staying involved in their world.

Laura: Any recommendations?

Gina: The October Daye series by Seanan McGuire. It's an urban fantasy and one of my favorites.

Laura: I’ll have to check it out. I’m in a book club, and we’re always looking for new reads. Do you take turns picking books in yours?

Gina: Yeah. There are about 10 of us. We do ours on Zoom most of the time since some members live in Detroit and out of state. But I love when we meet at the library. And I don’t like giving books away! My uncle always says, "Why don’t you stack them up and put a mattress on top?"

Laura: Haha, they’re treasures!

Gina: Exactly. I used to manage a bookstore, and it was the best job.

Laura: Would you ever go back to that?

Gina: If it paid enough, yeah. But, you know, retail. I worked in women’s fashion for over 20 years too. I just stopped four years ago. I always had two jobs.

Laura: Wow. So, you like to stay busy?

Gina: Yeah. I’m single, no kids, so work gives me focus. But I am a dog mom.

Laura: What kind of dog?

Gina: A dachshund-shih tzu mix. My other dachshund passed away about a month and a half ago—she was 15. I have a picture of her in my office.

She was beautiful and so sweet. Her name was TeeTee. My new dog, Rocky, is the opposite—he barks all the time.

What change would you like to see for disabled people in the future?

Gina: I want people to see our abilities, not just our disabilities. Don’t see my cane—see me.

Laura: See the whole person.

Gina: Exactly. And I want disabled people to see themselves that way too.

Laura: That’s a powerful message.

Gina: Nikki Giovanni said, "I hope that when I die, I am warmed by the life I tried to live." That’s my favorite quote.

Laura: That’s beautiful.

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In this candid conversation, Jessica Mae Dixon (she/they) shares her experience navigating life with cerebral palsy, the misconceptions surrounding disability, and the power of humor and curiosity.

Discussing Disability

Jessica: I always say I double, triple dip in the disability pool. I was born with cerebral palsy, and I also identify with a mood disorder. I have depression, anxiety, asthma, and high blood pressure, which I manage with medication. I think that’s it—not that I’m trying to acquire more! But I always remind people: at some point in your life, you’ll be part of the disability community, whether temporarily or permanently. Aging, in itself, is a disability.

Laura: Cerebral Palsy (CP)— that’s something you’re born with?

Jessica: Yeah, it’s considered a developmental disability. It affects my motor skills and balance, specifically on my right side, both upper and lower extremities. Some people with CP have cognitive impairments, while others never walk or talk. Then there are cases where you’d barely notice it.

I met someone once who told me she had CP, and I thought, bullshit. It took me a while to notice, but it was there—very subtle. That’s what I love about disability. It’s such a broad spectrum. And I have to remind people, just because I have CP doesn’t mean I know everyone with CP.

Laura: And you don’t represent everyone with CP either.

Jessica: Exactly. I even went on a date with a guy who had CP once—it was horrible. He wasn’t comfortable with his disability, and then he fell during our date and got so mad. I get it—I get frustrated too—but I was like, Dude, you’re with me.

Using Mobility Aids

Jessica: I’ve always used assistive devices. These are Sheila [gestures to crutches]—Outdoor Sheila has an ice pick, and Indoor Sheila is for home. At home, I just use one because I think I’m a badass. It’s a small space, and everything is where I like it.

I’ve only used them for six years, and I hated them at first. Some days, I still do. But I have so much more energy when I use them. If I want to go to the park after work, I actually can. They prevent falls, but I’ve still fallen with them—they’re not a guarantee. I call them my accessories. I’m basically an action figure that comes with extras.

Laura: I love that! I found the hashtag Babes with Mobility Aids, and it made me so happy.

Jessica: Yes! I’ve used that tag before. But honestly, I don’t have many pictures of my whole body with my mobility aids. It’s not that I don’t like looking at myself, but I don’t see myself that way. Does that make sense?

Laura: It does. I have an altered gait and have used mobility aids, too. You see everyone else moving and assume you move like them.

Jessica: Exactly! I remember once, I caught my reflection in sliding doors and freaked out. I thought, No wonder people stare at me!

And then people assume I’m in pain all the time. Sure, gaining weight or injuries can cause pain, but people think I’m suffering. No, dude—I’m just trying to get where I’m going, pay my bills, and grab a cheeseburger.

Laura: Have you always used mobility aids?

Jessica: Not always. I had a walker and a wheelchair when I was little, but by second grade, I was golden. I grew up on a farm, did everything my siblings did. Then, as I gained weight and got older, mobility got harder.

If you’d asked me three years ago, I would’ve said, I’m working on getting rid of them. Now, I think, If I don’t need them one day, great. If I do, oh well.

Growing Up & Aging with a Disability

Jessica: It’s funny because I’m a licensed counselor. I work mostly with people who acquire disabilities. When they’re struggling with how their body has changed, I have way more grace now. I know what it’s like to have your disability evolve over time.

Laura: I was born with my disability too—Larsen’s Syndrome, a connective tissue disorder. I get what you mean. You grow up fine, but then as you age, things start to change, and suddenly it’s affecting you in a different way.

Jessica: It starts to create more barriers. And it might not even be like big barriers to people who don't know what it is to live inside your body, but to us, it's another obstacle.

It was definitely a rough road growing up and not having people similar to me, that looked like me, or thought like I did. I mean, I had a few friends in school, but they had significant disabilities, blindness, wheelchair user. And at that time, because I didn't use a lot of devices, I'm like, well, I don't really fit in that group either.

Laura: Do you know a lot of people with Cerebral Palsy (CP) now?

Jessica: I do, but here’s the thing: all the funding and research is for kids with CP. No one talks about aging with it. I just finished physical therapy for incontinence, and I learned so much. It’s not just my CP—it’s a combination of aging, being a woman, and CP. But no one talks about this stuff. Adults with disabilities kind of get lost in the fold.

Laura: Yeah, when you’re a kid, there’s a whole plan for you. Then you turn 18, and it’s like, Alright, good luck!

Jessica: Right? And they lie to you. College will be paid for, you’ll get all these resources! Nope. But that’s okay—I don’t want handouts. I want a hand up.

I remember when I was 10, I got an award from the town that I lived in for like, something I didn't even do. Just like existing. And at that time, I was so excited. I got ice cream, my picture taken with the mayor and like, it was so cool. And that was so fucking ableist. I did nothing. It's because I had a disability that people were like, let's give this little girl something.

Laura: And then as an adult, you realize—no one cares.

Jessica: And I don’t want them to. When someone at the grocery store tells me, "You’re doing such a great job," I just want to say, "Lady, move. I’m just here for tacos."

Laura: [Laughing] Constantly inspiring people, despite your best efforts.

Jessica: Someone told me yesterday, “You look like you're suffering.” And I was like, “You know what I'm suffering from? Inflation. [laughter] I could really use a raise.”

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Outsider Perceptions

Laura: Do you feel like more people tell you you're an inspiration now that you're using mobility aids?

Jessica: Honestly, I get more pity now than I did before. Before, I was just walking around like, I don't have time for this—I’m doing my thing. But now, with the mobility aids and just the way my body moves over time, I take a little longer. And people feel the need to step in, like, “Let me help you.” But I tell them, “If I need help, I’ll ask.”

There was someone at work who came up to me and said, “I’m just really worried for you.” I told them, “That’s a you thing. That’s not my problem.”

Because here’s the thing—when you have a visible disability, your disability introduces you before you ever get to introduce yourself. And that’s a shame, because I’m so much more than that. But I also recognize that people aren’t necessarily uncomfortable with disability itself—they’re uncomfortable with vulnerability. And I am literally walking around as the embodiment of vulnerability, which I think freaks them out.

Laura: Yeah, it’s like you’re out on display in a way.

Jessica: Exactly. But to me, I’m just living my life. I pay my bills. I do the things I enjoy. I wouldn’t know any different.

People sometimes ask, “If there were a pill to ‘fix’ it, would you take it?” When I was 15, I probably would’ve said yes. Now? Pass it to the next person.

Laura: I hear you. I’ve had those conversations too, and I’m like, “No, I’m good. I don’t need to change anything.”

Jessica: It’s not that we’re fine—I mean, everyone’s kind of losing their shit. Some people are just better at hiding it than others.

Laura: That’s so true. And I feel like disability gives you a little more... I don’t know, stamina? Or at least a darker sense of humor?

Jessica: Oh, for sure. You have to, or society will eat you alive.

Laura: Otherwise you’d just cry every day.

Jessica: Which—I do that too. [laughs]

What do you do for fun?

Jessica: I spend a lot of time with my dog—he’s a pug. I like to read. And honestly? I just like spending time with people. I like eating. If someone asked me, What do you do for fun? my first answer would probably be, I eat. [Laughs]

But really, I love meeting people, connecting with them, and understanding them. I don’t even have to know them that well. I just enjoy watching how people navigate life.

But yeah, I don’t do anything too wild.I do some crafts here and there. I write poetry, but I don’t share it with anyone—it’s just something private that I do.

I love foreign films. And I love thrifting. COVID gave me a really bad thrifting habit. But I try to play by the rules—if I bring something in, I have to take something out. I can’t just keep collecting. Except when it comes to books. I have about 200 books in my apartment, and books don’t have a rule.

What motivates or inspires you?

Jessica: My curiosity.

Laura: Oh, that’s a good one. That probably explains why you love being around people, too.

Jessica: Yep. My thirst for knowledge and my curiosity—those are what drive me.

Laura: That’s such a gift to be born with.

Jessica: And I’m a Gemini, so it’s all wrapped up in there. [Laughs]

What change would you like to see for disabled people in the future?

Jessica: That’s a really good question. I think I’d like people to recognize that we all have something. That there’s no real divide between "us" and "them."

People act like disability is this separate thing—like, Oh, you’re part of that community now. But why can’t we just recognize disability as part of the human condition? That’s what I’d like to see. More people realizing that the distance between me and them is way shorter than they think.

Laura: Yeah. Disability is a construct—that’s really all it is.

Jessica: Exactly. And it comes in many flavors. I’m just a really spicy flavor. [Laughs] And then you’ve got people who are just plain vanilla.

But seriously, people have this idea that disability has to be seen, or that it has to be tragic. Or that it has to be this big charity-driven thing. But in reality? Disability is the human experience.

Laura: So well said. Drop the mic right there. Because it is the human experience.

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Discussing Disability

Laura: Would you mind sharing about your disability?

Tarah: Not at all. I have a very weird journey with my disability. I have ADHD, Generalized Anxiety Disorder, Depression, and recently found out I have an autoimmune disease. I also have a hypermobility disorder, and all of my diagnosis are due to the hypermobility disorder.

Laura: Wow, that’s a lot to navigate.

Tarah: Yeah, and for so long, I didn’t even realize how everything was connected.

Laura: So did you just find out that you're hypermobile? How did that come to light?
Tarah: Honestly, it was Katie. [Katie is the Advocacy Director at the Disability Network in Flint, MI where she and Tarah work. [You can read Katie's interview for the Portraits of Persons with Disabilities project here.]].

Laura: Oh, I was going to ask!

Tarah: Seriously, if it wasn’t for her, I don’t think I’d have figured it out. I was just talking to her about my body, my pain, and my experiences. At some point, it clicked, and she was like, “I think you’re hypermobile.”

I’ve danced my whole life, but because I was heavy as a kid, nobody cared. People just thought, “Oh, you’re a fat girl who’s flexible.” Then I lost all the weight, but the flexibility stayed—and so did the pain. I was always in pain, but everyone dismissed it. They said, “It’s your weight. You’re obese. Lose the weight, and the pain will go away.” Well, at 22, I was diagnosed with osteoarthritis. The doctor told me, “You have arthritis like a 75-year-old woman,” and I was like, “Excuse me? I’m 22.”

But then, at 28, I blew my knee out and completely tore my meniscus. When I went in for the MRI, the doctor looked at the scan and said, “What have you been doing your whole life?” I told him, “I’ve just been living… I danced.” That’s when he said, “You have a completely severed ACL. It’s been that way for years—there’s old blood attached to it.”

Laura: Oh my god, and you were walking around like that?

Tarah: Right? The doctor couldn’t believe it either. He said, “I don’t know how you’re walking like this.” And I just told him, “Well, I’m always in pain. I don’t know—I’m just used to it.” You know? It’s hard to explain.

Apparently, I severed my ACL when I was 14. I know exactly when it happened. I was in dance class, and we were learning doubles for the first time. I nailed a pirouette, but then my knee went one way, and I went the other. I landed on the floor, embarrassed and in so much pain.

I got up, went to the bathroom, splashed water on my face, and looked in the mirror. I told myself, “Suck it up. Do it again.” So I went back to class, finished the day, and went home. I refused to let my mom take me to the doctor. Then, about two years later, I got in a car accident and messed up the other side.

Laura: And that was your good side?

Tarah: Yeah, it was. So I just figured, “I have messed up joints, and that’s normal.” I’m a dancer—I fall a lot. I didn’t realize that none of those things were actually normal.

Katie really helped me make sense of it all. She kind of wrapped it up in a bow for me, and after that, I started talking to my doctors about it.

Laura: Do you think you might have Ehlers-Danlos Syndrome (EDS)? I know hypermobility is a spectrum—like, I don’t have EDS, but I’m hypermobile.

Tarah: I haven’t been officially diagnosed, but if there are 10 symptoms of EDS, I have about 9 ½ of them. Katie even said, “You have all the signs.” So, yeah, I really do think I have it—I just don’t have the official diagnosis. I have all the symptoms, though.

Laura: Yeah, honestly, just saying you have it makes sense. I mean, the diagnosis would be good for you personally, but that can take forever.

Tarah: Exactly. At this point, I just say, “Yeah, I have EDS.”

Laura: So the word “hypermobility”, how old were you when you started using it?

Tarah: Everyone called it double jointed. So like, they just were like, “Oh, that's weird, you’re double jointed.” I was like, “Is that a cool thing”?

I didn’t mind being weird, though. I love being weird. I figured, “I don’t want to be like you; I want to be like me.”

Doctors always called it “weird” and then moved on. No one ever addressed it. Even my physical therapists and occupational therapists would say, “It’s weird that your body does that—it’s not normal.”

Like, my SI joint [the joint at the back of the pelvis] doesn’t stay in place. When I was dancing, I would literally pop it out of its socket, and I couldn’t figure out why I suddenly couldn’t walk. They’d put it back, but the moment I stood up, it would pop out again.

Laura: I get that. I didn't know until a few years ago that what I was feeling in my joints was something dislocating, I never had that language before. It's so crazy how you can live not knowing.

Tarah: And you don't know if other people have this experience or if it's not normal.

Laura: Exactly.

Tarah: I hate the word normal, but you know what I mean.

Laura: Wow, well, I’m so happy to have you in the hypermobile family. We bend all over.

Tarah: That's my favorite thing to say. I'm just super bendy.

Laura: Is anyone else in your family hypermobile?

Tarah: Funny you ask. A couple of months ago, I was sitting with my stepsisters and our sister, and we were talking about my younger brother, Trey. They said, “We’re really worried about him—we think he has hypermobility issues.” I was like, “Shut up!”

Trey’s been having serious knee issues, and his physical therapist is still trying to figure it out. That’s when I realized this is genetic. My dad has terrible joints. My grandpa had long, skinny fingers like mine—they’re overly flexible—but he also had severe arthritis. By the time he was older, his joints froze completely. And I’m sitting there thinking, “Nobody’s going to check this out? This runs in the family!”

Plus the neurodivergent side of it. My brother has autism and we're about 99% sure my dad does too. So I'm like, “I have ADD/ADHD like a mofo, like come on now.”

Laura: Isn’t it wild how neurodivergence and hypermobility are connected? I think I read that 30% of people with ADHD or similar conditions also have connective tissue issues.

Tarah: It makes so much sense. When you think about it, if everything in your brain is moving so fast, maybe it’s because everything—literally everything—is just too smooth.

What do you do for fun?

Laura: What do you like to do for fun?

Tarah: I kind of like to do everything.

Laura: Another ADD thing…

Tarah: Yeah, for sure! But obviously, dance is my big thing. I love creative arts—dance, music, going to Broadway shows. I also love karaoke, being silly, being weird and laughing a lot. But, I also love to be in nature. I like to read, journal, and write. I’m definitely both sides of the spectrum—super creative and super introspective.

Laura: Yeah, you’re someone who loves living but also values solitude.

Tarah: Exactly. There’s no in-between.

Laura: What do you like to write?

Tarah: I like to write poetry. I also write nonfiction—mainly self-help and empowerment pieces. I’m kind of a therapist already, so my writing reflects that. I’m working toward becoming an LPC.

Laura: Did someone tell me you run some kind of art program here?

Tarah: Yes! I run TD & Connect, which is our free recreation and health program. Through that, I also lead an art class at the Flint Institute of Arts. We’re working on expanding to other organizations, like starting adaptive dance classes.

Right now, I’m also a Chair One fitness instructor—I teach chair fitness here. I do a lot of creative and mental health work. For example, I teach coping skills, goal planning, budgeting, and independent living skills. But I also focus on helping people get “unstuck.”

We all get stuck sometimes, and usually, we’re our own biggest obstacles. I try to help people embrace their quirks—like, “Let’s figure out what makes you weird so you can feel at home in it. Then, once you’re okay with it, you can advocate for yourself and others.” It’s all about owning who you are.

Laura: That’s really cool. You do so much!

Tarah: It works for me—and for my ADHD!

Laura: Yeah, it definitely sounds like it does. So are you working on getting licensed for therapy or social work?

Tarah: Yeah, right now I’m a CTRS, which stands for Certified Therapeutic Recreation Specialist. My next step is getting my master’s degree, so I can move into therapy.

Inspiration & Motivation

Laura:Cool, what a fun way to interact with people. Next question, what motivates or inspires you?

Tarah: People. I have this deep compassion for others—I just love people. I believe we’re all here together, so let’s figure it out. We’re meant to have a human experience, and we should nurture that, both for ourselves and for each other.

I feel like right now, in our culture, in this world, it's very negative, and it's very externally focused. No one is paying attention to the self. No one is nurturing the self, which means you're not nurturing anyone outside of yourself either. Everything's deteriorating and dying and sad and tragic and I want to help us come back to life.

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Change for the Future

Laura: So eloquently said. So what change would you like to see for disabled people in the future?

Tarah: That… is a deep question. I know we have the ADA, which was such a pivotal step forward, but I wish we had that same energy going forward—an energy where the whole world just acknowledges, “Yeah, we’re all people, with different abilities.” I wish people would truly see that.

Instead, we’ve created this whole “colorblind culture.” I was raised in it—my parents used to say, “Everybody’s the same. You’re the same. It doesn’t matter that you’re brown and she’s white.” And sure, that’s a beautiful idea to an extent, but it’s also hurtful.

Even now, at almost 40, I’m just learning how to be proud of being a Black woman. You know what I mean? I spent so much time trying to fit in with everyone else that it was hard to step into myself. And so, I want people with disabilities to know it’s okay to be different, to not fit into what everyone else thinks is “normal.” And I want other people to realize they likely have a disability too—and just fucking own it. That’s how I feel. Look in the mirror, accept who you are, so you can accept the people around you. Chances are, you have something. Got pain in your elbow? That’s a disability, honey. I’ve got arthritis. You wear glasses? That’s a disability. Have a little third nipple nobody knows about? Like, come on now, everybody’s weird.

Laura: Stop trying to act so “normal" all the time.

Tarah: I want for the new norm to be seeing someone with an assistive device or a visible disability and people respect them—not make their disability the first thing they notice or the thing that defines them.

Laura: I get that. As a disabled person, I just want to be Laura. Just let me be Laura.

Tarah: Right? Cause that's all you are.

Laura: And all that other stuff is just a part of me.

Tarah: It's just a little piece of who you are. I do feel like now that I've learned that I have hypermobility or EDS, I have to own that. It makes me make more sense to myself. But it doesn’t change who I am or how I move in the world. So why should it change how others see me?

Laura: Exactly. You are who you are.

Tarah: Some people can't talk, some people can't hear, some people can’t see–and that's okay. We’re all here to support each other, right?

Laura: Right. If we all just accepted our own weirdness, God, life would be so much easier.

Tarah: Exactly! Let’s all just look in the mirror and say, “I love you.” Love yourself. Cry it out, because yeah, it’s uncomfortable at first. But once you accept yourself, everything gets lighter.

Laura: I love your message—it really does start with you. Accept yourself, love yourself, and then you can love other people.

Tarah: Thank you. It's my mantra.

Laura: It's a good one. You're an excellent therapist. Anything else you want to say or add?

Tarah: I am very excited for your project.

Laura: Oh, thank you!

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Laura:

Would you mind sharing about your disability?

Katie:

I have something called hypermobility spectrum disorder—possibly hypermobile Ehlers-Danlos Syndrome, though this has yet to be diagnosed. Along with it, I deal with coexisting conditions like anxiety, and possibly ADHD.I also have an interesting immune system condition called eosinophilic esophagitis. (That’s a fun one—I had to practice saying it!) So, that one could also be related, or it could just be an overactive immune system. It impacts what I eat, how I eat, yeah.

Laura:

Do you have food sensitivities?

Katie:

Yeah, I’m one of the rare cases—I’m allergic to black pepper. My life is pretty much dictated by flare-ups, so I’m at the mercy of my immune system or whatever my body decides to do at the time.

Laura:

That sounds really challenging.

Katie:

I mean, I'm very used to it. And having answers instead of feeling like it's all in my head, or having doctors not understand or believe me for years, I feel better just knowing that.

It wasn’t until my knees started making a horrible noise that anyone took me seriously. Even then, my doctor said, “It’s just your shoes.” I responded, “No,” and he took his stethoscope, placed it on my knees, and said, “Oh my gosh, that’s your knees.” I replied, “Yes.” Then he said, “I’ve never heard that before. In 40 years of medicine, I’ve never heard that.” So I said, “Yeah, for the last 10 years I’ve been telling you something isn’t right.”

Laura:

Being a young woman too, they just don't want to believe you.

Katie:

A lot of mine got confused with being postpartum. So, things amplified after pregnancy, and became problematic, because some things just completely deterred me from certain activities. Whether it was hormones or just changes in my body, I’m not sure. It was fascinating because I didn’t know what a typical postpartum experience was like. By the time I had three kids, I thought, “Wait a second, something doesn’t add up—this isn’t just postpartum.”

Laura:

What do you do for fun?

Katie:

Okay, I love talking about what I do for fun. Without focusing on wine too much, I’ll describe my perfect day—one that hasn’t happened in a long time. Okay, so I would be sitting outside on the patio drinking a glass of red wine and reading a book. And just like, it's like dusk and it's just beautiful outside. There's no bugs for some reason, like the bugs have just gone missing.

Laura:

I am right there with you. What’s your favorite kind of red wine?

Katie:

Well, I'm really bad at wine. So like, whatever is like under $17 at the grocery store. I prefer when it's a twist top.

Laura:

Twist tops are so much easier—I’ve had my share of struggles with corks.

Katie:

I used to have this really trustworthy, corkscrew, and now it's not as trustworthy anymore. So I'm like, I can't get it, we gotta open it. So, now I have one of those cool like opener helpers.

Laura:

Yeah, I've seen those.

Katie:

They're the best. Everyone should have one. I think there's like, battery operated ones. But there is something to like, I don't know…

Laura:

Doing it yourself?

Katie:

Yeah, but even my hand mobility is not always the best. That’s why I love adaptive tools—there’s one with different-sized circles you can use to open all sorts of things.

Laura:

Oh, I've seen those. I think it's for people with arthritis too? I've followed some accessible cooking accounts, because yeah, my wrist strength isn’t great.

Katie:

Yeah, it's different from day to day. Some days I'm like, I can do this fine, and other days, I’m like, I've dropped everything. Everything is dropping.

Laura:

[Laughing] I get that. What kind of books do you like to read?

Katie:

I love Margaret Atwood very much. I love literary fiction. It’s one of those types of things I don't make enough time for anymore. I'm in the middle of like, probably literally 20 books on Goodreads, where I've tracked like 10 pages so far. But yeah, I love Margaret Atwood. I actually just got a book from her at the library. I didn't know she had a new collection of short stories.

Laura:

I haven't read any of her stuff, but I know about A Handmaid's Tale and that it's dystopian.

Katie:

That’s what I like, the let's just play around with the world. Where are we? Where are we going? What track are we on?

Laura:

What motivates or inspires you?

Katie:

That's a good one. I like storytelling. I like when people share their stories. I like hearing people's stories. I like getting really excited about things with other people. I think one of the things for me that's, like, the most inspiring is when people are really passionate about something. We were actually just talking recently about how you kind of find your people and typically it’s the people who are really excited about like a narrow thing. I don't have to love that thing, but how much you love that thing, makes me love it.

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Laura:

I understand that, as here I am doing it to you. Are you into podcasts at all?

Katie:

I'm really bad at it. I listen to one. I don't know why this one has resonated with me so much that it’s one I have started listening to routinely.

Laura:

Which one is that?

Katie:

It's called And That's Why We Drink. It's a true crime and ghost story one.

Laura:

That’s what started me on podcasts, the true crime ones. I listen to too many, but Armchair Expert is one I listen to a lot.

Kaite:

Okay, that's on my list. I haven't gotten there yet.

Laura:

I think you’d like it, because he interviews celebrities, but also experts on things. It's people who are really passionate about one thing and he asks really good questions about it. It's on Spotify.

Katie:

Okay, perfect. I love Spotify and anything on NPR, like The Moth. I like The Moth.

Laura:

Last question. What change would you like to see in the future for disabled people?

Katie:

This is the one I've been thinking about the most. I would love for there to be one answer. Like, the one thing that would just like, have it fixed, you know? Because it's so many things. I think one of the first steps is about perception, and about like, just changing minds and people's biases. So, I don't know what that is, and like, some of that is our work. How do we get people to see, to see disability in themselves, that shame and stigma, and like to be eased of that? For that to happen, society needs to change—but it’s a “chicken or the egg” scenario. Do we first focus on helping people with disabilities embrace their lived experiences and take pride in themselves, or do we push society to change how it views disability? So we're not born with these ideas of ourselves. I get excited about this up and coming generation and how they come about identity and pride and really living authentically. I don't feel like I had that. For me, it was a lot about hiding and a lot of shame and like, coming with a lot of equipment and things. Now, people just like, love having asthma like, it's just a thing, and I'm like, oh, okay. I remember going to sleepovers with a nebulizer and being like, this is cool, right? This is fun? So I'm excited that somewhere along the way, we're doing something right for young people. Like with my daughter, we have a lot of pride in it. We talk about it. We talk about advocacy, self advocacy. Knowing your rights, knowing your worth. So, maybe that's part of it.

Laura:

Wow, you give me hope for the younger generation.

Katie:

I put it all on them. I feel like I’m too tired. It has to be them right?

Laura:

Do any of your kids have hypermobility?

Katie:

My daughter, definitely. And she got really interested in dance, which surprised me. I've never done anything. I'm very much like what I would consider a basement kid. I love being in the basement, inside. And it's funny too, I just thought I was bad at sports. Why does it hurt so much? Why am I so bad? It never appealed to me—I wasn’t particularly graceful. But she’s really thriving! Dance helps her ADHD by giving her focus and providing the movement her body craves. She's very sensory seeking, so ballet really does something lovely for her. And I was like, this is amazing. She has a really great dance instructor who noticed her hypermobility right away, which means she's not gonna be as prone to injury because there's someone telling her, “This is what it feels like to stand up straight. Your straight is gonna look different than hers.” Someone really looking at her ankle sleeve, and then I was like, “Can you show me how to make my ankles not do that?” She told her how to keep your torso upright and keep your legs slightly bent. I was trying to practice that too, so my knees weren't locking. It was so unnatural. I love that she'll be learning this about her body and keeping it safe.

Laura:

Yeah, and she’s learning it at such a young age, that's got to be so helpful.

Katie:

Ballet is a weird one, where like, hypermobile people excel in it because of their bodies and then their bodies get trashed from dance. I want her to be able to love it, but she made a comment the other day, “Well dance is pain,” and I was like, “No. Where are you getting this? Whoever said that is terrible.” I want her to know that, like, pain is part of life, but it's not how you know you're doing life. I don't want pain to be the defining thing, like, I know I'm alive because I'm in pain.

Laura:

I’ve seen a lot of people with Ehlers-Danlos who were dancers.

Katie:

I think it's because you prize their extensions. Who’s got better extensions than people who are hypermobile? Again, I imagine if I had any rhythm or grace maybe it would have been lovely. I'm not athletic at all and it doesn't fill me up.

Laura:

Yeah, I understand that. So is it just your daughter who you think is hypermobile? What about the others?

Katie:

It's hard to tell, because they're younger. I know there's some level that bodies are hypermobile and like, squishy? It's just like, once we get to a certain point, that we'll just keep an eye on it. And like, she started to kind of hit some of the same milestones I did. Like she developed asthma at the same age and so I'm just kind of interested to see. I tried to mitigate like, X, Y, and Z because the research says this, but it really is just kind of luck of the draw. She's got a good mom for it. I got experience, at least

Laura:

That’s true. Is anyone in your family like your mom or any one hypermobile that they know?

Katie:

Well, my cousins are and then my grandmother, we think we got it from her only because in pictures, she has a very similar frame as me, but like her hands, like piano playing hands, more than an octave. She was a twin and she looked vastly different than her twin sister. She was much taller, and again, very long arms and limbs. And then my aunt Donna was very petite, so I don't know. And the genetic testing, nothing's come from it. I ended up paying for it myself, because I couldn't get the doctor to order it.

Laura:

Yeah, that's what I've heard about genetic testing, that usually it's paid for out of pocket. Didn't you say the genetic testing didn't show much?

Katie:

No, it found other weird things. Which, like, great, I wasn’t worried about my eyes but now I am. But I know, the research, they're still looking at a lot of that stuff, they just don't know what the variant looks like for collagen. And at least one doctor was like, yeah, that's not right. That's all I needed, someone to say it's not all in your head.

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