Portraits of Persons with Disabilities: Katie Curnow

This interview was held at The Disability Network in Flint, Michigan in May 2023 where Katie is the Advocacy Director. Katie is a passionate advocate and storyteller living with Ehlers Danlos Syndrome. Katie shares her journey navigating a complex mix of health challenges, including anxiety, ADHD, and eosinophilic esophagitis, and reflects on the resilience and adaptability she's cultivated. Together, Laura and Katie discuss the realities of managing invisible disabilities, the importance of self-advocacy, and the hope Katie holds for future generations to embrace disability with pride and strength.

For more Portraits of Persons with Disabilities interviews, click here.

Laura:

Alright, we'll start with your name. Easy question.

Kaite:

Yes. So my name is Katie Curnow.

Laura:

Okay, and age?

Katie:

I am 39.

Laura:

Great. Preferred pronouns?

Katie:

She/ Her. 

Laura:

Awesome. Would you mind sharing about your disability?

Katie:

I have something called hypermobility spectrum disorder. Possibly hypermobility or hyper mobile, Ehlers Danlos, yet to be diagnosed. So, with that comes other things, coexisting conditions like anxiety, possibly ADHD is part of that? And then I also have an interesting immune system. And I have something called, this was a fun one, I was actually practicing saying it, hold on… eosinophilic esophagitis, so that's a really exciting one. 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:

Is it like, do you have food sensitivities?
Katie:

Yeah, so I'm like, I'm in that top five, and I'm allergic to black pepper and then textures. So if certain things are inflamed, or if I'm having any type of flare up, I'm pretty much driven by flare ups. So I’m at the mercy of my immune system or whatever my body wants to do with that time. 

Laura:

That sounds…hard. 

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, and just knowing that. It wasn't until my knees started to make a horrible noise that I was taken seriously. And even then, my doctor was like, that's your shoes. And I said, no, he took his stethoscope and put it on my knees, and he was like, oh, my gosh, that's your knees. I'm like, yes. And he said, I've never heard that before. In 40 years of medicine. I've never heard that. So I'm like, for the last 10 years I've been something isn’t right.

Laura:

And being a young woman too, I tell ya, 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 were just completely... I don't want to say, like symptomatic, but not deterred me from certain activities. And then whether it was hormones or just a change in bodies…

Laura:

Yeah, and I just see how that was like, oh, well, that's just postpartum like, yeah, just something else to blame everything on. 

Katie:

And it was fascinating, cause then I was like, I didn't know what like um, a postpartum experience would be like, and then it wasn't until I had 3 kids, I was like, wait a second, like, something doesn't add up, that's not postpartum. 

Laura:

Definitely not. Well, what do you do for fun?

Katie:

Okay, so I love what I do for fun. Without saying like, drinking, I'll just describe my perfect day 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, you know, 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:

Yeah, I’ve broken a lot of corks, so I just don’t even try anymore. 

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, yeah, but even my hand mobility is not always the best. That’s why I'm like super pumped on getting that thing, it's like different size circles, and you can use it to make it help open things, for everything.

Laura:

Oh, I've seen though, and I think it's for people with arthritis too, I think? I've followed some accessible cooking accounts, because yeah, my wrist strength… it’s like what's going on there?

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 like Goodreads, where I've tracked like, I've read 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:  

Okay, I haven't read any of her stuff. But, I know about A Handmaid's Tale, I know she wrote that, its fun….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:

So, next question, what motivates or inspires you?

Katie:

That's a good one. I like storytelling. I like when people share their stories. Yeah, 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, and feel like we're the same.

Laura:

I understand that, as here I am doing it to you. Are you a podcaster, 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. Well, okay, 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:

Yeah, 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:

I'm a big NPR person. 

Katie:

I have guilt when it comes time to donate to like PBS and to like an NPR affiliate. I reached out to their Central Michigan office and was like, “Can you tell me who needs it the most?” They were like, “No, we can’t, that's lovely, but just like, pick one that you like.” I was like, “but, I know someone could use…” again, it's like $20… I’m not a high roller, but yeah, “Who could use a little love?”

Laura:

I love that you called them and were like, “Who needs it the most?” I still haven’t donated…

Katie:

Just to lower it a little bit, to the reality, what I ended up doing was: who had the best gift? I started with good intentions, but then I was like, I want a t-shirt.

Laura:

Okay, I was gonna ask what gift did you get? The t-shirt. Nice. I waited in Chicago to donate until it was, I think, a tote bag that I really wanted. And then a mug, but now the mug’s broken. Anyways, 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? 

Laura:

Yeah, and that's such a nice response to that question. 

Katie:

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? That takes society to change, so like the chicken or the egg? Do we help people disabilities you know, embracing and taking pride in themselves and their lived experience, is it getting society to change the way they think about it? So we're not born with these ideas of ourselves? So, I wanted to have a really eloquent answer. I would love to see and I think 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. It was a lot about hiding and like, you know, a lot of shame and you know, and like, coming with a lot of equipment and things and accessories now like, people just like love having asthma like it's just like a thing and I'm like, oh, okay, like I remember going like sleepovers with a nebulizer and being like, this is cool, right? This is fun?

So I'm excited that, like, 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: 

Yeah, that's such a good answer. And 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. So 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? So, it just never appealed to me, and I wasn't particularly graceful, but she has really thrived in it. For her ADHD, it gives her so much good focus and like movement that her body needs. Like she's very sensory seeking, so like ballet really does something lovely for her. And I was like, this is amazing. And she has a really great dance instructor who noticed right away her hypermobility at her age, which means she's not gonna be like, 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.” And really looking at her ankle sleeve. And then I was like, “Can you show me how to make my ankles not do that?”

Laura:

[Laughing] Yeah, so how do we stand? 

Katie:

She told her how to keep your torso upright and keep your legs slightly bent. So, 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. So it is natural. Yeah,

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, it seems like a lot of them 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.

Laura:

Same. One of my physical therapists who was hypermobile, she came from a dance background and then there's podcasts I've listened to on hypermobility, but they also were athletic. And I was like, we don't have that much in common, like we're all hypermobile, but you come at it from a different place than I do. 

Katie:

Yeah, I'm not athletic at all. And it doesn't fill me up.

Laura:

Yeah, I understand. That's great. I'm glad that you enjoy your books and the red wine. So, is it just your daughter you think that's hypermobile or 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 and there are all these things. I tried to mitigate like, X, Y, and Z so that yeah, the research says this and 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. And she is interesting. She was a twin and she looked vastly different than her twin sister. So she was much taller, and again, very long arms and limbs. And then my aunt Donna was very petite. And so yeah, 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 why I've heard like, for fertility stuff, we had to do genetic testing and pay for it. And they did genetic testing on me, like when I was really young. I'm sure my parents paid out of pocket. Yeah, but 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. And I did see, you know, like, again, I did become an armchair geneticist. I'm like, what does this mean? So many different variants, and then I’m digging in, and I could see, you know, different parts. Like they just don't know what that you know, that variant looks like for collagen. So, I have things, there's just no research supporting it. So I was like, well, I'll just wait. And at least one doctor is like, yeah, that's not right. Yeah, that's all I needed, someone to say it's not all in your head.

Laura: 

I bet. Yeah. It's like bill me for that one. I am happy. Alright. Well, great job on that interview. Thank you so much. 

Portraits of Persons with Disabilities: Tara Holloman

“I know we have the ADA, which was so pivotal, and I wish we had that same energy going forth, so that the whole world would be like, yeah, we’re all just people, with different abilities. And I wish we would see people for that, instead of the whole, colorblind culture. Like I was raised, where even my parents were like, everybody’s the same. You’re the same. It doesn’t matter that you’re brown and she’s white. And that’s beautiful, to an extent, but it’s also hurtful. Because even as an adult now, I’m almost 40 and I’m just now like, learning how to be proud that I’m this black woman. You know what I mean? Because I spent so much of my time pretending to be like everyone else that it was hard for me to step into me. And so I want people who have disabilities to feel like it’s okay to be different or not what everyone else thinks is normal. And I want other people to realize you have a disability too and just fucking own it. That’s how I feel. I feel like, please, accept who you are in the mirror, so you can accept all the people around you. And chances are you have a disability. You have what you have some pain in your elbow? That’s a disability, honey. I got some arthritis. You wear glasses? Do you have a little third nipple that no one knows about? You know what I mean? Like, come on now. Everybody’s weird.
”

— Tara Holloman

Tara Holomon, Flint, Michigan, 2023

This interview was done at The Disability Network in Flint, Michigan in May 2023 where Tara is the Health & Recreation Specialist. She talks to us about her journey with Ehlers Danlos Syndrome, ADHD and living authentically.

For more Portraits of Persons with Disabilities interviews, click here.

Laura:

We'll start with your name, please.

Tara:

My name is Tara Holloman.

Laura:

Alright, and how old are you?

Tara:

I am 39.

Laura:

Great, I’m 37, basically the same. Preferred pronouns?

Tara:

She/her, and I'm okay with they/them as well.

Laura:

Okay. Would you mind sharing about your disability?

Tara:

You know, I don't mind. I have a very weird journey with my disability but I have ADHD, I have Generalized Anxiety Disorder, Depression, recently found out I have an autoimmune disease. And I also have a hypermobility disorder. And all of that comes together, it is because of that.

Laura:

Yeah, yeah, it does it 

Tara:

I didn’t know.

Laura:

So did you just find out that you're hypermobile? Okay. And how did that come to light? 

Tara:

Literally, Katie. [Katie is the Advocacy Director at the Disability Network in Flint, MI where this interview took place.]

Laura:

Okay, I was gonna ask.

Tara: 

Seriously, if it wasn't for Katie, I was just talking to her and explaining, just me and my body and different things and I just was like, your body's weird too, cool. Yeah, I danced my whole life and because I was really heavy and overweight, no one cared. You're just a fat girl who's flexible. And I was like, cool. It's my knee. Then, I lost all that weight and I was still super flexible and in pain. And I was always in pain, but everyone dismissed it. [It’s] your weight; you're obese. All you have to do is lose your weight. You have arthritis. Well, at 22 I was diagnosed with osteoarthritis and the guy was like, you have arthritis, like a 75 year old woman, and I was 22. And I was like, I'm sorry. I don't know. 

But then at 28 I actually had blown my knee out and a completely torn meniscus. And I get into the MRI, and the doctor was like, what have you done your whole life? And I was like, live… I danced. And he was like, you have a completely severed ACL. It's just in and there's old blood attached to it. So it's years old. 

Laura:

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

Tara:

And I don't know how you're walking like that. And I was like, well, I am always in pain. I don't know. I'm in pain. So I just keep it pushing. Because, I don't know how to explain that, you know?. But apparently, when I was 14, I had severed my ACL. I know the exact moment it happened. Because I was in dance class. I did a pirouette, and it was the first day we were learning doubles, and I nailed it. And then my knee went that way. And I went that way. And I landed on the floor. And I was so embarrassed. And in pain. I got up, went to the bathroom, smashed my face. And I looked in the mirror and I was like, suck it up. Do it again. I went back to class. And I went home and would not let my mom take me to the doctor. Then I got in a car accident about two years later and messed up this side. 

Laura:

And that was your good side?

Tara:

Yeah, and so I just figured I was like, so I have messed up joints and that’s just normal. I’m a dancer, I fall a lot. I didn't know none of those things are normal. Yeah. And so Katie really, like wrapped it up in a bow. And then I started talking to my doctors about it and yeah.

Laura: 

Wow. So do you know if you have like the Ehlers Danlos? Like hypermobility is a spectrum and like, I don't have EDS, but I'm hypermobile.

Tara:

I haven't been diagnosed, but I have if you could say there's like 10 symptoms of Ehlers, I have like 9 ½ . So yeah, I think I have actually, EDS, and that's what Katie's like you have all of them. Like, I actually think I have it, but um, I don't have the official diagnosis. I just have all the official pains.

Laura:

Yeah. Honestly, if you just say you have it, I mean, of course, you want the diagnosis for yourself, but that's gonna take forever…

Tara:

Yeah, actually, I just say yeah, I have EDS.

Laura: 

Just put it in my chart, like you don't care, you don't need to see the paperwork. Wow. So the word hypermobility, like, how old were you when he started speaking that?

Tara:

Everyone calls 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 was like, I’ll be weird. I love to be weird. I'm just like, cool, I don't want to be like you, cause you is not me, and I wanna be like me. Yeah, I'll be weird. But they call it double jointed. And then they thought it was just like, every doctor has always just been like, wow, that's weird that that does that, and then they move on. No one ever addresses it. Even my therapists, like PTs and OTs, they’re like, it's weird that your body does that. That's not normal, it's supposed to be right here. Like my SI joint back here, goes like this. So I've been dancing and I would like, pop it out of a socket and I would be like, I don’t know why I can't walk, and they put it back. But I stand up and it goes right back.

Laura:

I get that. I didn't know until like, a year or so ago that what I was feeling was something dislocating, I never had that language before. It's so crazy how you can live not knowing.

Tara:

Just knowing this is my body. And you don't know if other people have this experience or if it's not normal. 

Laura:

Yeah, exactly. 

Tara:

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

Laura:

Oh, yeah, exactly. And then I'm sure, being a dancer, just so much gets pushed under that umbrella. And like the obesity thing too, just so much gets pushed under that. It's like, it's this, it's this, it’s this. Wow, well, I’m so happy to have you in the hypermobile family. We bend all over.

Tara:

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

Laura:

Is anyone else in your family hypermobile?

Tara: 

The funniest thing is, a couple months ago, we were just sitting at the table, me and my step sisters and our sister. And we were like, yeah, we're really worried about Trey, that's my younger brother, and I was like, what's going on? And they're talking about him, they were like, we really think he has hypermobility issues. And I was like, shut up. My brother has been having knee issues and his PT, it just keeps going. And I was like, this is genetic. yes. My dad has really bad joints. My grandpa, like we have, I have long skinny fingers, that's overly flexible, but he had really bad arthritis. And by the time he was like, he couldn't fit, his joints froze. But all of his joints did weird things. And same with my dad. And I'm like so nobody’s gonna check this out.

Laura:

Yeah. We're all just fine with this? Doctors are like if it's not killing ya, then what am I here for? 

Tara:

Right. 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 crazy how those are connected too? I think it's like 30%. That's what I read, and who knows, maybe I'm remembering it wrong. But yeah, that the ADD and the neurodivergence goes along with the connective tissue.

Tara:

Isn’t it wild? When you think about it, if everything is moving so quick and fast in there, maybe it's because everything is just smooth.

Laura:

Exactly. 

Tara:

Sorry, I’m very expressive.

Laura:

That’s okay, you’re in good company.

But, yeah, it's like what came first in a way like, the hypermobility or the ADD? I don't know. They just kind of inform each other constantly. Yeah. Yeah, I understand. 

Tara:

You are my people. 

Laura:

Yes. All right. Well, what do you like to do for fun?

Tara:

I kinda like to do everything.

Laura:

Another ADD in the thing…

Tara: 

Yeah, but obviously dance. So I love creative arts, dance, music. I like going to Broadway shows. I like karaoke, and being weird and silly and just like laughing a lot. But I also love to be in nature. And I like to read and I like to journal and I'm a writer. So I'm very much, extremely both sides of the spectrum.

Laura:

Yeah, yeah. You like livin’ and you like the solitude. 

Tara:

Yes, there’s no inbetween.

Laura:

What do you like to write?

Tara:

I like to write poetry. And I really like to, I guess nonfiction. I like to write, like, self help, empowerments. I'm kinda, I'm a therapist. And I want to be a, what's it called? Limited? An LPC.

Laura:

Did someone tell me do you run some art thing here?

Tara:

Yes, I run TD & Connect, which is our free and recreation and health program. But through that, I have an art class that I do at Flint Institute of Art. And then we're working on hopefully getting in with some other organizations to do like adaptive dance classes. And right now, I'm a Chair One fitness instructor. So I teach chair fitness here. And we do lots of art. We do lots of mental health stuff. I like to teach coping skills with goal planning, budgeting, you know, independent life skills, but also like, how do you get unstuck? Because we get stuck. And we're our biggest issue. So I like to try to help people like, it's okay, we're all weird. Let's figure out how you're weird, so you can feel home in your weirdness. And live in it and be okay with that. And then advocate for other people like, hey, yeah, this is me. And I'm okay with it. Respect. 

Laura:

Yeah, that's really cool. You do a lot. 

Tara:

Yeah, it works for me and my ADHD. 

Laura:

Yeah, it definitely does. So are you like, are you working on, I don't know, all like the licenses for social workers and therapists.

Tara:

Yeah, currently, I'm a CTRS. So that's a Certified Therapeutic Recreation Specialist. And then I have to go to school to get my masters, for the next step of therapy. 
Laura:

And that then is the LPC.

Tara:

Yes. I think it's, Limited Licensed Practice, Psychological Counselor or something like that? Essentially, it's just another fancy way to say a therapist.

Laura:

Okay. Gotcha.

Tara:

As far as social work, I think it's more, not necessarily specialized. But like, social work is very broad. And I think it's just more honed in on that one-on-one type therapy.

Laura:

Okay. Yeah, we have a friend who's doing her master's in social work and I’m trying to keep up with it.

Tara:

And social work is amazing. And I might even change my mind and do that a little bit easier and opens a lot more doors.

Laura:

Oh, really? So you can hone in on being like the one on one therapy or you can go like more generalized?

Tara:

Yes, you can be like, what we as a society think of a social worker, like working in public, like community or public health type stuff. You can do that. You can be a macro social worker, and work in nonprofit organizations and do a lot of advocacy type stuff, like some of what Jess [the LPC at the Disability Network] does, or you can do the one-on-one, like Jess does. There's so many different capacities for social work, and I think that's why it's so broad. It can cover various, all aspects of life. Whereas with the LPC, there's focus, like your schooling is focused on psychology and just the therapy. Not so much of the everything. And because I'm already a rec therapist and I have that, I just want to focus on that. But MSW is way simpler to attain.There’s more schools for it.

Laura:

That makes a lot of sense. Wow, I’m learning so much about social work.

Tara:

And I'm super long winded. So I'm sorry. 

Laura:

No, no, you're doing great. All right. So cool. Wow, I've never heard of and tell me, you're a rec…

Tara:

I’m a recreational therapist, a CTRS, that's what my license is called.

Laura:

Okay, I’m gonna look into that for my own self.

Tara:

Everyone should be a rec therapist, its the best job in the world. It gets no respect, but its fun, and it covers a lot. Like, I could be an event planner.

Laura:  

Yeah, it sounds like your skills are vast.

Tara:

Or a therapist.

Laura:

Cool, and it's just a fun way to interact with people. All right. Back on the interview, so what motivates or inspires you?

Tara:

People. I have like, I don't know, I have like this inner drive, where I just have this compassion for people. I love people. I think we're all here together. Let's figure it out. But also, we're here to have a human experience, and we should nurture that, for ourselves and one another. And I don't feel like, I feel like right now, in our culture, in this world it's really heavy and it's very negative, and it's very externally focused. No one's paying attention to self. No one's nurturing self. Which means that you're not nurturing anyone outside of yourself either and no one in the world is, and so we're all, everything's deteriorating and dying and sad and tragic. And I want to help us come back to life.

Laura:

It's beautiful, so eloquently said. So what change would you like to see for disabled people in the future?

Tara:

I…that is a deep question. I want like, I know we have the ADA, which was so pivotal, and I wish we had that same energy going forth, so that the whole world would be like, yeah, we're all just people, with different abilities. And I wish we would see people for that, instead of the whole, colorblind culture. Like I was raised, where even my parents were like, everybody's the same. You're the same. It doesn't matter that you're brown and she's white. And that's beautiful, to an extent, but it's also hurtful. Because even as an adult now, I'm almost 40 and I’m just now like, learning how to be proud that I'm this black woman. You know what I mean? Because I spent so much of my time pretending to be like everyone else that it was hard for me to step into me. And so I want people who have disabilities to feel like it's okay to be different or not what everyone else thinks is normal. And I want other people to realize you have a disability too and just fucking own it. That's how I feel. I feel like, please, accept who you are in the mirror, so you can accept all the people around you. And chances are you have a disability. You have what you have some pain in your elbow? That's a disability, honey. I got some arthritis. You wear glasses? Do you have a little third nipple that no one knows about? You know what I mean? Like, come on now. Everybody’s weird. 

Laura:

Stop trying to act so like normal all the time.

Tara: 

I want for one day for it to be the new norm to be like seeing someone with an assistive device, or have someone with a visible disability and people respect it and don't acknowledge it as their first thing, as their definer, or their identifier.

Laura:

I get that. Because yeah, I mean, as a disabled person, like I like I just want to be Laura. Just let me be Laura. 

Tara:

Right? Cause that's all you are. 

Laura: 

And all that other stuff is just a part of it.

Tara:

They just comprise Laura.

Laura:

Yes!

Tara:

Its 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. However, it doesn't change who I am, and how I move in this world. So why should that change for other people? Like why would you, why do we have to judge that? You using a wheelchair does not affect the person that you are.

Laura: 

Exactly. Like you are who you are. 

Tara:

Some people can't talk, some people can't hear, some people can’t see. That's okay. We support each other, right?

Laura: 

Yeah, the sooner we all just accepted our weirdness, God, the easier it would be.

Tara:

Right? Let's all just look in the mirror and say I love you. Yeah, yourself. Cry it out because I know that feels uncomfortable. And you’re really uncomfortable and you’re like, I don’t know.

Laura:

I like your message of like, it starts with you, accept you and love yourself and then you can love other people. 

Tara:

Thank you. It's my mantra.

Laura:

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

Tara:

I am very excited for your project.

Laura:

Oh, thank you. 

Tara:

So, I want to support it in whatever way I can. I think it’s awesome.

Laura:

Thank you. Well, hopefully these will be up in a gallery and I can invite you to come and look. 

Tara:

I'm going to speak it into existence. I've already told people, it's gonna be up in Detroit and Chicago. It’s gonna be a big deal.

Laura:

Okay, I feel that.

Tara:

I’m owning that for you. I did that for you. It's manifested.

Laura: 

All right. It's gonna happen. 

Portraits of Persons with Disabilities: Gina DeShong

“I hope I die warmed by the life that I tried to live.”

— Nikki Giovanni, The Collected Poetry, 1968-1998

Gina DeShong, Flint, Michigan 2023

This interview was done at The Disability Network in Flint, Michigan in May 2023 where Gina is the Program Director. She is a stroke survivor, avid reader and hometown girl.

For more Portraits of Persons with Disabilities interviews, click here.

Laura:
What is your name?

Gina:
Gina Deshawn.

Laura:
And Gina, how old are you?

Gina:
59.

Laura:
Okay, and what are your preferred pronouns?

Gina:
She/her.

Laura:
Would you mind sharing about your disability?

Gina:
No. A little over a year ago, I had a stroke. So, I have to use a cane sometimes, but it's getting better. And I also have high blood pressure, diabetes, and asthma that at times can be crippling.

Laura:
Have you had that your whole life?

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

Laura:
Was it like people smoking around you or was there...?

Gina:
I was working in a restaurant and the hoods broke. We didn't realize it, and I just started making a funny noise. I didn't know why I was doing that. Then my mother said, 'I think you're having an asthma attack.' So we went to the hospital, and sure enough. It's been a while, but I manage it pretty well. But I cannot be around smoke or popcorn. People cooking popcorn is my biggest trigger. If I go to the movies, my friends have to go in and check the conditions.

Laura:
Oh my gosh, that sounds frustrating. When you do have an asthma attack, do you have to go to the hospital or use a nebulizer?

Gina:
I have a nebulizer and rescue inhalers. It's very seldom that I have to seek treatment now because I know how to handle it myself.

Laura:
That's good.

Gina:
But it wasn't always that way.

Laura:
Have the wildfires, the Canadian wildfires, affected you at all?

Gina:
No.

Laura:
Happy to hear. And so, what do you like to do for fun?

Gina:
For fun? My number one thing is reading. I love to read and travel. My siblings all live, except for one, in Columbus, Ohio. So, I enjoy hanging out with my brothers and sister.

Laura:
That's great. Has having to use a cane now, has that impacted your ability to travel?

Gina:
No, I think people are funny. They see the cane and they're a lot kinder. They respond to it with 'Do you want to sit here?' and 'Are you okay?' I get that a lot. But I'm very independent. I think people are kinder.

Laura:
I've noticed when I use a mobility aid, yeah, people, they see you a lot more.

Gina:
And they want to help. They want you to be okay.

Laura:
Is there a favorite destination that you've traveled to?

Gina:
My favorite place was Jamaica. I would like to go back there.

Laura:
I hear Jamaica is beautiful.

Gina:
It is. The people are beautiful. The island was beautiful. It was just so much fun.

Laura:
How long were you there for?

Gina:
A week.

Laura:
What motivates or inspires you?

Gina:
I think it was the way I was raised. My parents and grandparents would say, 'Just keep trying, keep pushing. You have to sign what you do with excellence.' And also, being a black woman and then I've always been a big girl. My mom always said to me, 'You have to do better because they think big people are a certain way.' And, ‘They don't need to see you as that, they need to see you as more.’ So, the memory of my parents and my grandparents and I just want to do what's right. And it helps me because every day I get up and pray, 'Let me be a blessing to someone today, just someone.' And so that's what motivates me in this job. And then I have a team. I have the biggest team here. So, I can't fall apart because people depend on me and that's important to me.

Laura:
You have quite the leadership role. It sounds like you were primed for this though with your upbringing and stuff. Are you from Michigan originally?

Gina:
Yep, born and raised here. I live in the house I grew up in. Yeah, I live outside of Flint in Mount Morris, but I'm from Flint, born and raised, and I went to Beecher High School. Are you familiar with Beecher?

Laura:
No, we're from Chicago. So, there's a Beecher, Illinois, I'm familiar with.

Gina:
Okay. It's the community I grew up in, we're very close. I was in a meeting this week, and there was a girl from Beecher there. And she says, 'Bucks for life,' and that's what we always do.

Laura:
That's great. Yeah, I kind of wish I had that. I like the people I grew up with. But then yeah, when we went to high school everybody went separate ways. I would have loved to stay with everyone. Did you say it was a Bucks for life or bugs?

Gina:
Bucks.

Laura:
Do like a lot of people who you grew up with, are they still around in the community?

Gina:
Yes.

Laura:
Because everyone really enjoyed it?

Gina:
Yeah, no, everyone didn't run away. A lot of us came back.

Laura:
Yeah, that really says a lot about the place you grew up. How did you end up working here, at the Disability Network?

Gina:
I used to work at Michigan Rehabilitation Services, and I was a job developer. So, I would teach classes to people. Job writing skills. Luke would come over there for meetings and stuff. One day, he sat in one of my job classes, and afterward he came up to me and said, 'I need you to come work for me.' And that's how I ended up here.

Laura:
Do you miss teaching classes or not?

Gina:
No.

Laura:
Yeah. Do you feel like a leadership role is where you thrive?

Gina:
Yeah.

Laura:
Yeah, it seems like that.

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

Laura:
I think people need that. Yeah, that's awesome. You said you'd like to read. What do you like to read?

Gina:
Well, my favorite genre is urban fantasy. I love urban fantasy. And I like mysteries a lot.

Laura:
Yeah, me too. I like a page-turner, keeps me involved.

Gina:
And I like series, because I like to know the characters and get to know them and get involved. I love a series.

Laura:
Yeah. Is there a series you recommend?

Gina:
I'm trying to think, my favorite one is by Seanan McGuire. And it's the October Daye series. It's an urban fantasy. It's one of my favorites.

Laura:
I'll have to look into that. I'm in a book club and we're always looking… Do you take turns picking?

Gina:
Yeah.

Laura:
Is it a bigger book club?

Gina:
Not really. It's about 10.

Laura:
Oh, okay. Yeah, ours is 4, and only two of us read, the other two don't really, haha. We do it more to socialize.

Gina:
We usually do it on Zoom, sometimes we meet at the library. I like when we meet at the library, but they're out of the state, a couple of people, in Detroit a couple of people. So, it was just too hard. I love reading. My house is full of books. So, I'm trying to organize them now.

Laura:
Yeah. Did you ever do the color organization like the rainbow?

Gina:
No, but I love the way that looks.

Laura:
Yeah, I tried that once. It looks better in magazines. I don’t think I had enough colorful book covers.

Gina:
Yeah, and I don't like to give books away. My uncle's always like, 'Why don’t you stack them up and put a mattress on top of them or something?' So I'm like, 'Uncle Jimmy, really?'

Laura:
Yeah, they're my prizes.

Gina:
Yeah, they are useful to sit down to show. I managed a bookstore when I was younger and it was such a great experience.

Laura:
Really? Would you go back to do that if you could, or do you like what you’re doing?

Gina:
If it paid enough, yeah, I think I would, but, you know, retail.

Laura:
I just created a whole fantasy world for you, where you're the manager of a bookstore, it's perfect retail, and you get paid a lot of money.

Gina:
I worked in women's fashion too, for over 20 years. I just stopped that about four years ago. I always had two jobs.

Laura:
Yeah, I was gonna say were you doing that and this? You like to work?

Gina:
Yeah, I do like to work. Yeah, I'm single. I don't have kids. So it gave me some focus. I'm a doggy mom. He’s so naughty. But yeah, I'm a doggy mom.

Laura:
What kind of dog?

Gina:
He's a dachshund and shih tzu mix. My other dachshund died about a month and a half ago. I had her for 15 years. I have a picture of her in my office. She was so beautiful and so sweet. Her name was TeeTee, and she was the opposite of Rocky. Rocky is just bark, bark, bark.

Laura:
Is Rocky younger than…?

Gina:
Yeah, I got him from rescue. I just asked for a background check, but I love him.

Laura:
Yeah. Animals are nice to have around. And I like a little dog.

Gina:
I like big dogs too. My brother has a rottweiler, Bear Bear, but it's just too much to handle.

Laura:
Yeah. The dog you can control. It's kind of like a cat but more friendly. I got off topic. Alright, the final question of the interview is what change would you like to see for disabled people in the future?

Gina:
I would like people to be viewed for their abilities, not for their disabilities. People are so judgmental, and I would like to see that change. Don't see my cane, see me. You know, find out about me, what I like, what I can do.

Laura:
See the whole person rather.

Gina:
Yes, and I want people with disabilities to think of themselves like that. When people call here and they start out like, 'I'm disabled, you have to help me,' that is so hard for me. It's not a privileged class. And I'm right there with you.

Laura:
Yeah, that is interesting about disability, a lot of people just have different attitudes towards it, and just people with disabilities.

Gina:
Yeah, and people with disabilities think they should get more because they have a disability. That's not necessarily true.

Laura:
And thoughts like that are why people get mad at people with disabilities.

Gina:
Yeah, that's it. And, you know, you are talking to a black woman. I come from a different place, you know. So it's hard.

Laura:
Yeah, like, to see that entitlement all the time?

Gina:
Yeah.

Laura:
Yeah, I'd imagine. But that's good, though. That's why you're in charge. You're like, I'm not buying it.

Gina:
No. You have to try. Please try.

Laura:
Yeah, because not everyone's gonna do it for you. And then it makes you think about how these people were raised. If a family's treating the disabilities like you don't have to do anything for yourself and the family should do everything for you, they're just not doing anyone any favors.

Gina:
It reminds me, my grandfather used to say to me all the time, 'Baby, you're beautiful and so smart. Don't let anybody change that.'

Laura:
It's good. Yeah, you get support, but also like higher expectations for yourself.

Gina:
Yes, exactly.

Laura:
And that’s what disabled people need.

Gina:
Yes.

Laura:
So, I’m glad you're in charge. Alright. Well, excellent. Anything else you want to throw out there in the interview?

Gina:
You said you want to quote?

Laura:
Well, yeah, so I'm going to put a quote from the interview next to your portrait. So, even if you have an inspiring quote that you'd like to say or just what you want your quote to be, you can speak it, can go with that.

Gina:
Maya Angelou said, 'I can be changed by what happens to me but I don't have to be reduced by it.' That is something I think about and live by, but my number one quote, by Nikki Giovanni, I got to meet her a couple months ago.

Laura:
I don’t know who Nikki Giovanni is?

Gina:
She was, is, a famous poet and writer, she’s still alive. She said, 'I hope that when I die, I am warmed by the life I tried to live.' That's my favorite quote in the whole world and I got her to sign it a couple months ago. I'm gonna have it framed. Yeah, I love that. That's been it for years. That's been my number one quote.

Laura:
Did you say, I'm warmed or mourned?

Gina:
Warmed.

Laura:
Okay, that’s what I thought you said but then I just wanted to make sure.

Gina:
Isn’t that wonderful?

Laura:
Yeah.

Gina:
I hope when I die, because you know, when people die, people say, all this, oh, they're so wonderful after they die. Think it while I'm here, you know? So, yeah.

Laura:
I like that. We’ll put that one next to it.

Gina:
You might have to look it up, because I hope that I said it totally correctly.

Laura:
Okay. Yeah, yeah, I'll double check. Okay. Excellent.

Portraits of Persons with Disabilities: Jessica Mae Dixon

“I tell people, my disability gets to introduce me before I ever get to introduce myself, [because I] have a seen disability. And I feel like that’s really unfair... no, I don’t feel like it’s unfair, it’s a shame. Cause I’m so much more than that. I think sometimes people get really uncomfortable, not with the disability, but the fact that I am vulnerability walking around. Like the most vulnerable parts of yourself that terrify you, I’m that.”

— Jessica Mae Dixon

Jessica Mae Dixon, May, 2023.

This interview was conducted in partnership with the Disability Network in Flint, MIchigan, where Jessica works as a counselor. She shares her experience living and aging as a woman with Cerebral Palsy.

Laura:

What is your name?

Jessica:

My name? Do you want my full name, like the birth name? My full name is Jessica Mae with an E. Dixon. I'm going to be 42 in two weeks.

Laura:

Uh, your skin looks amazing.

Jessica:

Thank you. Um, my preferred pronouns are she and they. Um, disability. This is the thing I'm most comfortable with sharing. I've been at TDN [The Disability Network] 14 years, so I've been here a while and I forget sometimes when I go out, that people don't normally like talking about disability. 

Laura:

Yeah, people aren’t as well versed in it.

Jessica:

And I like give people disabilities. I'm like, they obviously have to have a disability. What's your disability? And they’re like, I don't have a disability. Um, I tell people I double, triple dip in the disability pool. So, I was born with cerebral palsy. And I also identify with a mood disorder. I have depression. I also have anxiety. I have asthma. I manage that with inhalers. I have high blood pressure, but I manage that with medication. I think that's it, not that I'm trying to acquire more. But I also tell people, you know, at some point in your life, you will be a part of the community, whether it's temporary or permanent, right? And aging in itself is a disability, right? So yeah, that makes sense. Um, is there anything else that you want to know about the disability specifically?

Laura:

Cerebral palsy, so that's like from birth, you're born with cerebral palsy, right?

Jessica:

So yeah, it's considered a developmental disability. It affects my motor skills, balance. Specifically for me, on my right side, both upper and lower extremities. I mean, some people with CP can have cognitive impairments, but then there's some people with CP that never walk, they never talk. You know, some people might say, Well, yours is real mild. I've met people that like, this girl told me once she had CP and I was like, bullshit. It took me a minute to kind of find it. It was really, really subtle, but that's the kind of thing I like about disability. It's such a broad spectrum. Right? And I have to remind people sometimes just because I have CP doesn't mean I know everyone with CP.

Laura:

Yes, it doesn't mean like, yeah, I represent everyone with CP either.

Jessica:

I even went on a date with a guy that had CP once, and it was horrible, because he didn't have a lot of disability acceptance. And then he fell while we were on our date and he was so pissed. I was like, okay, dude, I get pissed, too, I get it, but like, you’re with me. And I always have had assistive devices. These are Sheila [pointing to her crutches]. This is Outdoor Sheila because she has an icepick. And this is indoor Sheila, cause when I'm at home, I just use one. Because I think I'm a badass at home. It's a small space and things are where I like it.  It's just like, Yeah, I've been using them six years, um… didn't really like them. Some days I don't like them. But I have way more energy when I use them. For end of the day stuff like if I want to go to the park after work, I have energy to do that. They do prevent falls, but I have fallen with them. So they're not 100% I can't say like they say they save me everytime, they don’t. But yeah, that's something I would say new, being 42 and only having used them the last six years. They’re new… I call them accessories, right? Like yeah, I'm an action figure that come with accessories. 

Laura: 

I found the hashtag babes with mobility aids, and that made me just so happy. 
Jessica:

Yeah! I've done an Instagram post with that. Because even when I was thinking about this photography of people disabilities, I do not have many many pictures if at all, if any of me, like my whole body, because I wouldn't say I don't like looking at myself, but seeing myself with my aids. I don't see myself like that. Does that make sense? 

Laura:

It does because I also I have like an altered gait and I've used mobility aids and I understand like you see everyone else moving and you think you move like everyone else. 

Jessica:

…Exactly the same! Yeah, I remember like one time, I don't know how old I was, I got to see a reflection of myself coming to the sliding doors and I freaked out. Because I was like no wonder people are staring at me or no wonder I get weird looks. I would look like that if I was coming towards somebody.

Laura:

I totally get that, yeah. I've seen videos of me as a child and I’m like how is that person moving?
Jessica:

Or people think you're in pain all the time. I mean, for me at least the more weight I gain the heart, the more pain I'm in. So, that does cause pain, but like, people think I'm suffering or, you know, I'm just having a hard time and it's like, no, dude, I'm just trying to get where I'm going, pay my bills and go get a cheeseburger. I'm just living my life. Right?

Laura:

Yeah, this is just how I move.

Jessica:

Right, this is just how I move

Laura:

Have you always had mobility aids?

Jessica:

Yes, well, no, I mean, I had a walker and a wheelchair for a while. Then I think about second grade, good gold golden, I grew up on a farm, so, very active, I did everything all my siblings did, and then just as I gained weight and got injuries, then like, my mobility started to get a little bit harder. So I mean, if you would have said maybe like, three years ago, I'd be like, I’m gonna get rid of these like, I’m working on it, I don't need them. Now, I’m just like, if I get rid of them, great, if I don’t, oh well.

Laura: 

Yes, I know, the acceptance that comes with that.
Jessica: 

Yes, it takes some time. And it's funny, because I'm also a licensed counselor. So like, I'm counseling people with disabilities, and most of the people I work with acquire disabilities, which I find it really interesting. I don’t work with a lot of people like myself. And so when they're pissing and moaning about how their body has changed, or what they have to do differently, I'm just, I give more grace than I used to, because now I know what it's like to have your disability evolve and change over long periods of time. But at the end of the day, like, I get to call them on their shit, because I myself have been there and gotten over it. Like, yep, we can set a timer. You can have pity for 5 minutes, and then we're gonna move on. So, it's kind of like, I live in this space, where I see a lot of myself sometimes reflected in the people that I see, but I wouldn't want to be doing anything else. I don't really want to work with the worried-well, I want to work with people that are worried about real life shit, even if I can't solve it. 

Laura:

Worried-well, I’ve never heard that, but I like it.

Jessica:

Yeah, that's what my mentor called it because I thought that's what I wanted to do. I thought I wanted to like, hold my own practice, have clients and she's like, a lot of your clients are just gonna be the worried-well, I'm like, I don't think I'm gonna like that.

Laura:

Yeah, you’d be like, what do you have to complain about? 

Jessica:

Yeah, your son doesn't get all A's, right?

Laura: 

I was also born with my disability, I have Larsen’s Syndrome and it affects my mobility. It's a connective tissue disorder. But I get what you mean, like, you grow up and you're fine. And actually, I had braces and then didn't use any mobility aids for a long time, too. And now I'm just using knee braces, custom shoes, but also realizing, oh, yeah, my disability is changing, as I'm getting older now, in a way I feel kind of affected by it and…
Jessica:

It creates 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 marker, at least in my mind, it's like, oh, yeah, dummy, you have a disability. I don't walk around and think I don't, and I'm not in denial. But a lot of my years, I joke that I'm a recovering Catholic. But like, being in the church and stuff, you know, and like being the youngest person to grow up and get your, you know, healing hands laid on you. Like, you know, God can heal you. And I'm just like, pluck this, I’m out of here. 

Laura:

Yeah, like heal me from what?

Jessica:

Yeah, like, you also supposedly created me in this image, so I’m confused. There's kind of a paradox here. But yeah, that was the only time where I felt really gross about my disability was when it was just like, well, you're special, and also, you could be healed at any time. And so it's like, but that doesn't mean I'm special anymore?

Laura:

Yeah and you're like, I'm kind of like, I'm fine with what I got going. Yeah, I understand that.

Jessica: 

It was definitely a rough road and not having people similar to me, around, that look like me, or 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, right? 

Laura:

Do you know many people with CP now?

Jessica:

I do. I do, but that's what's bullshit, I say too about having like developmental disabilities. All the funding and all the studies are on young people, and there isn't as much as like aging with your disability. And so it's hard to find as an adult, like, is this normal? Like, I just like I'm telling you everything, I just got done a few months ago with incontinence, physical therapy for incontinence. And I learned a ton. And I learned it's more than just my CP, there's some other things that are going on. But it's like, once I knew where to look, and the lady helped me look into articles. It was like, oh, this is common for people as they- well, I thought, maybe it's just me cause I’m getting old and I’m a woman. It's that, and it's this, and it's this, and it’s this. But it's like, no one's talking about it. Or there's not a place where I can go find it readily to be like, okay, like, this is how you handle it. This is what you do, type of thing. That gets frustrating sometimes. Not that I don't want kids to have fun doing your research, but I think sometimes adults as we age, with disabilities, kind of get lost in the fold.

Laura:

Absolutely. Yeah. And I think you see that too, like growing up with a disability and like, how much attention and in a way, like, have a plan like the medical world has for you, like, you're gonna do this and this and this and this, and then you turn 18, and it's like, alright, later days.
Jessica:

Yeah, because they lie to you. They told me like, you're you're gonna get your college paid for you're gonna get this, and I didn’t get none of that crap. And that’s okay, I'm never one for a handout, I'm always one for a hand up. If it's available and it makes sense to me and I can help somebody else, but yeah, that’s a total myth. You know, but I remember too, now that I'm older and I have the background and education that I do, and just working as long as I have, I remember like, when I was 10, I think I got an award from the town that I lived in for like, something I didn't even do. Just like showing off. And in that time, I was so excited. I got like, 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 it gives you a false idea of the real world too, because you realize as an adult, no one's gonna give a shit.

Jessica:

And I don’t want people to give a shit either. When people come up to me at the grocery store and be like, I just want to say you are doing such a great job. I wanna be like, lady get the fuck out of my way. Let me get my taco fixings and get out. Like I’m not here to be your inspiration. They call that inspiration porn, in the disability community. And then I think like, wow, that hasn't happened a while, and I’ll think we're getting somewhere and then it'll pop up, like it never fails, like you can't get away from it.

Laura:

[Laughing] Constantly inspiring people, despite my efforts not to.

Jessica:

Or, like someone will say, someone said to me yesterday, like, “you look like you're suffering.” And I'm like, you know what I'm suffering from? Inflation. [laughter] I could use a raise. 

Laura:

[Laughs] Honestly, yes.

Jessica:

Or you know what else I’m suffering from? My partner doesn’t listen to me. Right? I don’t know if you could talk to them? But yeah, humor works, humor works well. 

Laura:

Yeah. That's what someone else was saying earlier. Um, can I ask, do you like notice are more people telling you what an inspiration you are like, now that you're using mobility aids?

Jessica:

I get more pity now, than I did before. Because I just kind of walked around was just like, I don't have time for, you know, like, I'm doing what I'm doing. And now, like, with the aids, and just my body in time. I, you know, it takes me a minute. And people, they tend to be like, you know, let me help you. And it's just like, I'll ask you if I need help. And I tell people, like, people that I've gotten to know, you know cause someone at work came to me and said, you know, I'm just really worried for you, and I just want to help and just try to be kind. I was like, that's a you thing. You're uncomfortable with something that I'm doing just to navigate the space, or whatever. That's how I do things. If you're uncomfortable, that's about you. And it's not my job as a therapist, or as your coworker to help you figure that out. You need to go talk to somebody, to figure that out. Because I tell people, my disability gets to introduce me before I ever get to introduce myself, when you have a seen disability. And I feel like that's really unfair… No, I don't feel like it's unfair, it's a shame. Cause I'm so much more than that. And then I also recognize because you can see the differences that I have, I think sometimes people get really uncomfortable not with a disability, but the fact that I'm vulnerability walking around. Like the most vulnerable parts of yourself that terrify you, I’m that.

Laura:

You're just like out on display in a way.

Jessica:

Correct. But to me, it's just like, I pay my bills. I'm getting things I like. You know? 

Laura:

Yeah, it's all a part of living. 
Jessica:

It's all part of living. I wouldn't know any different. You know and like, you know, somebody said, if there was a pill, would you take it? When I was 15, I would have said yes. Now, go to the next person.

Laura:

I hear ya. I remember talking to people about that, and being like no, I think I'm fine how I am. I don't need to change anything.

Jessica:

It's not like we're fine. I mean, everybody's losing their shit. Some people just tuck it in better than other people.

Laura:

That's true. And this does give you a little more just, I don't know, stamina or like humor, just having a disability.
Jessica:

It does, it does. You have to or else I think society gets the best of you. 

Laura:

Yeah, that's true, or else you’d just cry every day. 
Jessica: 

Which, I do that too [laughs]. 

Laura:

If I’m not laughin’, I’m cryin’.

Jessica:

Yes, it's cathartic. It's cathartic. Um, what do I do for fun? Um, I don't know, I spend a lot of time with my dog, it's a pug. I like to read. I just like spending time with people. I like to eat. I think if somebody asked me, what do you do for fun and I’d be like, I eat? I like spending time with people, just people in general. I don't really have to know them that well, either. Obviously. I just like meeting people, connecting with people, understanding people. You know, paying attention to you know, just how people navigate life.

Laura:

Yeah, I get that people are interesting. That's why I like doing this. 
Jessica:

I bet! Yeah, but I don't do anything too wild. 

Laura:

Do you do any like crafting? Do you have any hobbies? 

Jessica:

I guess besides reading, not really I'll do crafts. I write poetry. But like, I don't share it with people or anything. Yeah, just like something private that I do. I like foreign films. I like thrifting. COVID gave me a really bad thrifting relationship. But you know, I like it. You know, and I try to play by the rules. Like if I thrift one thing, then one thing has to come out. I can’t keep collecting. I do have like 200 books in my apartment though. So, like books don't have a rule. 

Laura:

No, they don't. Yeah, I'm in a book club and a lot of our members, I'm too cheap to buy a book, so just do everything at the library. But yeah, they just got books on books on books.

Jessica:

Yep. Yeah. And that's what they're there for. That's what they're there for. 

Laura:

They're beautiful to look at. And do you remember in the pandemic, when you're like, oh my God, is the electricity gonna go out? Am I gonna be someone who finally reads all these books? 
Jessica:

[Reading the prompt] what motivates or inspires me? Um, my curiosity.

Laura: 

Oh, that's a good one. Yeah, that’s probably is what gets you to like being around people too.
Jessica: 

Yep, my thirst for knowledge and my curiosity, I think are what motivates me and inspires me at the same time.

Laura:

That's great. That's such like a gift to be born with too.
Jessica:

And I'm a Gemini, so it's pretty much like it's all wrapped up in there.

[Reading the prompt] What change would you like to see for people disabled people in the future? That’s a really good question. I think for people to recognize we all have something. Not such a divide, I guess in between, like the us and them. Right, like, well, you're part of this community now. It's like, why can't we just be part of the human condition? That's what I would like to see is more people just recognizing the distance between me and Brian [gestures to Brian] is shorter than you think.

Laura:

Yeah, like disability is a construct. It's really all it is.

Jessica:

It is, and it comes in many flavors. I'm just a really spicy flavor. [Laughter] And then there’s other people who are just like vanilla. And, you know, I think two people have this idea that disability has to be seen. It has to be tragic. It has to be, you know, very charity driven. And the reality is, is like no, like, disability is the human experience.

Laura:

So well said. Like drop the mic right there. Because it is the human experience. Thank you.

Portraits of Persons with Disabilities: Father Time

Laura: First question; what is your name? 

Father: Father Time. 

Laura: Father Time. And what is your birth name? 

Father: Napier. 

Laura: How would you like to be known?

Father: Father Time. 

Laura: Cool. Good to know. Um and what is your age? You can always say timeless if you want. 

Father: Timeless. 

Laura: Alright, so tell me, I'm sorry your, your diagnosis one more time. 

Father: Retinitis pigmentosa. RP. 

Laura: Does that mean then you're legally blind? 

Father: Yeah, I am. I think I'm gonna be legally blind now. Yeah I have uh this side is like, um, it's, it's, why everything is whitey now. This side, I can see bright light if I kind of get the pigments right. So this was just like, I'm still here, okay? 

Laura: Gotcha.

Father: Retinitis pigmentosa is a degenerating eye disease that destroys the cones, the cones and rods, and you start losing peripheral vision. So everything, so everything starts to narrow down because of the pigment that grows on the back of the eye and around the optic nerve. It also causes the optic nerve damage cause the pressure on the eye. There are some genetic treatments, but stem cells, but it depends on, which uh, which one that you have. I've got the one they’re saying ‘ii’. 

Laura: Yeah the stem cells aren't going to work for it. 

Father: Yeah. So, they do a genetic background. So some of them they did there are some treatments. There's been a couple of doctors down in Florida was one that treated a couple of people for RP and they wound up going blind. But he was he was more of a; ‘I'll give her a shot. I think I got my degree from Kellogg’s’. 

Laura: Did you used to see more when you started wrestling? 

Father: Yeah. I saw a little bit more. I was, you know, at least in a in a dark room. I could see you, but now it's like, make some noise or either hope you're sweating. 

Laura: So were you born, like able to fully see? 

Father: Okay. This is uh listen, I call it a generational disease but it skips generations.

Laura: Oh really? 

Father: I look back and there was only one, one person that I knew that was blind. It was one of my aunties, and she was like, oh God, 90 some odd years old. So I don't know whether because of being so old or because of retinitis. I went back as far as I could and the only ever person, and it was me. And it went to my daughter normally…

Laura: Oh wow.

Father: Retinitis pigment before there was a lot of research, normally, retinitis pigmentosa go from the mother to the son. This went from the dad to the daughter. So, I think our names in the medical journal, possibly.

Laura: Probably.

Father: So I remember the first time I was diagnosed. I was probably in first grade. And uh my grandparents, he worked construction. So I was able to go to a pretty decent ophthalmologist. And uh the first time they looked at it, you know, he said; ‘Your grandson is going to go blind’. And I heard my grandmother screaming and yelling at him. She didn’t take it too well. And because of the rarity of the disease, they thought it was just in the in the Caucasians. 

Laura: Oh really?

Father: But my dad is isn’t Caucasian; don’t say he is.

Laura: My lips are sealed. 

Father: So anyway, so it's been a degenerating disease. It’s been gradual. And something really interesting about it; uh I was I used to, I used to think I was big and clumsy. Because sometimes I would trip over things, you know? I didn't know that uh there's lack of peripheral vision. 

Laura: Oh wow. 

Father: And then kind of dim light. It was hard to see. So when I turned 18 and 19, I went to a eye doctor, and he said; ‘You got retinitis pigmentosa’. And it came back, that name did. And he started explaining to me my vision. And I got happy. Because I realized; ‘Hey, I'm not big and dumb and clumsy’. And he was like; ‘Are you okay?’ I said; ‘Yeah, I’m fine’. 

Laura: Yeah. Isn't that amazing? It's funny how having a diagnosis can actually be really liberating for some people, having a name to what you've been experiencing. 

Father: Yeah, cause you know, that's when you know, everybody else is going, where you going the opposite direction. 

Laura: Yeah. 

Father: You think you know. What, why? You know, am I the only one? And suddenly you find out the reason for it, then it's more acceptable. You say; ‘Ah, I’ve got retinitis pigmentosa’. That's why I can’t see. 

Laura: Yeah. Sorry guys, it's my RP. 

Father: It was a good pick up line too, you know? 

Laura: Really? 

Father: Why are you standing in the dark? I can't see well. Why? I’ve got retinitis pigmentosa. Oh, really? Let me help you. Let me let me stop. 

Laura: Yeah. Let's hold hands. All right. So, I see you've really made this work for you in your life. 

Father: Yeah. You know, a lot of it is because of my humor. But I tell you it has not it truly has not been easy. It really hasn't. 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. And it caused me a lot of problems in the shop. They thought I kept telling one foreman. I said; ‘I cannot do this job because I can't see to do the job’. 

He's on me, on me, on me. And, you know, finally he, he actually said; ‘You know, I tell my children what to do, and they listen, but when I tell you, you won't’. Are you calling me a child? 

Laura: Yeah. 

Father: And you know, it did, it caused a lot of problems. Matter of fact, uh I got a direct at the shop. I told him, I said; ‘I cannot drive. I can drive, but I said it’s too congested for me to drive. And 2100 was the final assembly. And I was sitting there, he said; ‘I'm giving you a direct order’. And I said; ‘Y'all’, it was a general foreman. I said; ‘Y'all heard me tell him why I could not drive’. 

They shook their head and said yes. He said; ‘When you get a direct order, you gotta go’. So, within about 20 minutes this guy he was drinking. He hit me head on. 

Laura: Were you okay?

Father: I was okay; I got 30 days off with pay. 

Laura: Oh, well that's good. At least you got pay.

Father: 30 days off with pay, because they didn't want to have to fire him. And it came off my record in 30 days. 

Laura: What year was that?

Father: That’s probably back in the 80s. 

Laura: Okay. 

Father: And I mean, it's, it's like, when I was young, I walked off a bridge. 

Laura: Oh my God. How terrifying.

Father: [Chuckling] It sure was. Especially when I hit the ground.

Laura: How far down did you go?

Father: 15 feet.

Laura: It's amazing that you’re still walking. 

Father: Yeah. It was, I don't know. I'm a true believer of God, and I know He had his hands on me. I guess I was close to the water. I landed on the bank. It was a lot of moss and stuff there. 

Laura: Were you by yourself? 

Father: No. There was a Boy Scout Jamboree, with my brother. And we walkin and we're gonna have those bridges, with the little railroad ties on either side. So, I couldn't see it. So I just kind of went that way, instead of that way, and right off I went. 

Laura: That's so terrifying. 

Father: Yeah. And um I was okay. I have a, it's, you know, like I said because of my sense of humor… Going blind and being born blind is, 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. It’s a lot of, a lot of, you know, just the mental part of it. Not being able to do something that you were doing before, you learn you have to do it, how to do it now. So I was like, you know, just putting something together. I've been always good with my hands. I had to put something together in 10 minutes, now it takes me 30. You know? 

Laura: Yeah. And then having to tell other people that like, things have changed for you and just having to advocate for yourself as you get older.

Father: Yeah. 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. Like a person is blind and they're moving and a lot of people does not realize what a white cane means.

Laura: Yeah, you have invisible disabilities.

Father: Yeah. Consumers was hiring people with disabilities. And I said; ‘I got a disability’. She said; ‘No, we want somebody in a wheelchair’.

Laura: Ugh, like, I'm not disabled enough for you, great.

Father: They wanted, they wanted people to see it immediately. 

Laura: Yeah. It was more the optics. Wait, who is Consumers?

Father: Gas electrics. 

Laura: Okay. The woman I interviewed before you, she used to work for them. 

Father: Yeah. We all did.

So I mean, it's, it’s been even, you know, just even growing up. You know, I played football in school, and because the lack of peripheral vision, I would always have to look down the line in order to see and sometimes I would, I would jump the gun. So I got penalized a few times. I started to know what, how to deal with it, you know? Uh grocery shopping, cooking, you know, any normal things. You know I had, I had to quit driving about 10 years ago. 

Laura: You drove for a long time, though. 

Father: Yeah, but I had all kinds of mirrors in the car. And, I never made left turns. Because of the disease. And I will make a right turn, go to the light or an intersection, and, and come back. 

Laura: Man, and then you think too about how much time that just adds into your day or you just like going to the grocery store, it'll take someone else 10 minutes, it will take you like 15 or 20. 

Father: Yeah, just to find a can of peas. 

Laura: Yeah, and then finding the can of peas once you're in there is probably difficult too.

Father: Yeah. That’s uh, it is, it’s, it’s different. Especially now that my vision has deteriorated to where it's at now. I usually have to have somebody go shopping with me. In order to find specific items, you know? So I've got dairy arranged in Walmart stores and so on, so I memorize. 

Laura:When did you start wrestling? 

Father: 10 years ago. This is the 11th year. And uh, they found out that I was the oldest, oldest starting professional wrestler in the world. 

Laura: Cool!

Father: So WWE, I’m in those books. I met Chris Jericho, and a lot of the other guys over there. It's really, really neat. I've been able to you know, because of what growing up was really rough for me. I grew up with a lot of abuse, a lot of drinking and drugs and stuff. I've lost uncles and aunties to drugs and jumping out windows and stuff because of the drugs. And as I got older, I was seemed like, I was always the cause of the blindness too; the cause a lot of problem. I always felt like I was a kid that, you know, if it said ‘boneless chicken’, I always got the bone. 

Laura: Because they thought you wouldn't notice? 

Father: No, I mean, it was just the way life was. You know? 

Laura: I gotcha. 

Father: You're going through stuff as a kid, and you know the family life is not well, you know, you take a lot of things negatively. So uh and because of the drinking that was around me. Even at a young age, I purposed in my mind and heart that I was not going to be this way. You know, statistics say I should be an alcoholic, with drug tendencies and beating my wife. 

And so, so when I got 18, 19, no, it's 20 something; about 20 then, and uh I used to really think God hated me. Because I read in Leviticus he learned well, he said that; ‘He accepts anything except for something that’s crippled, blind, spotted’. 

Laura: Does it say that in the Bible? 

Father: Yeah. Because with sacrifices, it has to be a perfect sacrifice. So anything that was, you know, crippled, you know, it's like the animal will be sacrificed. Because you supposed to give your best. 

And then at the part where he says he loves who he loves, hate who he hate…But anyway, when I read that, I said; ‘He hates me’. 

Laura: How could you not internalize that? 

Father: Yeah, you know. So I was pouting one day, I had accepted him as my Savior, and I got quiet. And he said, I heard him say; ‘If these things had not happened to you, you wouldn't be able to do what you're doing or what you're about ready to do’. And that took the burden off of me. 

Laura: Yeah.

Father: I didn't like it. But from that point on, the things that I had went through, I was able to speak to people. And then over the years, I started counseling people, emerging as a minister. And uh this seemed like everything that we talked about, I had been through it or had a family member or somebody that I was close to that related to these things. So when I started wrestling, pro wrestling, we started going out to schools and I became a motivational speaker. And I cannot 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 mean, and I described, you know, going to school Monday through Friday, you know Thursday is Friday, you know, the Freedom Day. And all of a sudden, you know, you'd be looking at the clock. Three o'clock comes, you run home. And you know, you're free from it. We talked about, you know, Saturday. I enjoy Saturday, and, you know, you plan everything to Sunday. Then at a certain time Sunday, you look at the clock and you start going down. You know, I was talking about that. And you can see the kids, you know, tearing up and stuff. 

Laura: Yeah. 

Father: And it was so you know, just different things like that, that I went through that I was able to talk to kids and was so crazy. I got to kind of tell them what I went through. It sounds crazy. I've had three strokes. 

Laura: Oh my gosh!

Father: I’ve had two rounds of cancer. I had prostate cancer five years ago. Had surgery and everything. I've had not because of me, but I've had about four really five serious accidents. And uh just everything else, and the blindness. Matter of fact, that was, even when I went to uh start training, I had given up, because every time I would find a school something would happen. And uh I just said; ‘I quit’. So I was out at the Genesee County Fair and we were sitting there and I'm looking at the rest of the match. And I said, let me try one more time. And I asked what card, he kind of flipped to me, you know? And I got a hold of him and went up to this young guy, and he was, what was he? 30, 29/30 years old. 

Laura: Okay. And when was this in your life? 

Father: 10 years; 10/11 years ago. So he says, my son gets out, young guy, you know, muscled guy. And uh he says; ‘I'm here for the wrestling’. Joe says; ‘You're right’. He said; ‘Oh, no, my dad’. I’ve got the grey hair. He goes; ‘Oh God’.

Laura: He wasn't expecting that.

Father: No. So we got in. We got into the ring, and we started doing things, and I started telling him what was going on. And he kept asking me; ‘You sure your doctor says it's clear’? I said; ‘Yeah, yeah. Everything's good’. And uh I took my shirt off, and he went; ‘Oh my God, we can work with this’. 

Laura: Really? 

Father: Yeah. 

Laura: He realized you’re ripped. 

Father: I’m like; ‘I'm getting back in shape now’. I think this might be my last year. 

Laura: Oh, really? 

Father: I’m thinking. It might be so. 

Laura: What's making you feel like you might slow down? 

Father: A lot. We do a lot of traveling. And one thing that's like the one part bad part about it is if I was making $100,000, then I can afford to pay somebody to travel with me. I  have to get a ride. 

Laura: Yeah, being disabled is not cheap. 

Father: No, it's not. So I'm thinking about as well that's one of the reasons for it. I had an opportunity to win a Ring of Honor. It was the second largest companies in the United States. I did the show for them. I was the first wrestler that ever got paid for a dark match. That means that's a match that kind of warms up for the crowd, you know? And it’s not they record it, but it's not seen on TV. So when I was a well, I was the first, first wrestler to get paid. And I thought that was so cool. 

Laura: Yeah, that is cool.

Father: Stanley Truth Martini. He's the one that got me hooked up with that. He's got a school down in Detroit. 

Laura: Oh, cool. 

Father: You know, it’s just been a lot. I, I tried to kill myself at one time. 

Laura: Oh my gosh. How long ago was that? 

Father: 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. There's been so many different times where in my life, I've been put in position with people to talk to them. And I was talking to a guy one day and I said; ‘Man, I get so tired of this’. I just you know, just it wears me out. And I say this all, I think about all this stuff; the accidents, the cancers, the strokes. And I said; ‘Man, this is something else’. He looked at me and said; ‘You know, if all that stuff never happened to you, you wouldn't be Father Time’. 

Laura: Yeah. Really. 

Father: So I just shut up. You know, it's been it's, it's been, it's been intense for me at times. Like I said, because and because of that, and my sense of humor. I find that I told one person 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: A cow patty is poop. 

Laura: Okay. That's what I thought, but I wasn't 100% sure. 

Father: And he said; ‘Well, why is that?’ I said; ‘The cow patty in this land now, it looks like poop. It is something worthless, alright? I said; ‘Pick it up, you know with a stick’. And I said; ‘You find life, look under’. 

Laura: Yeah, it's true.

Father: 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 with life. You know, there's so many things is going on now. You can focus on all the, all the peripherals, that you forget about what you focus on. 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’. And so I've tried to instill that in other people, and I try to keep it in me. And at times I do I get down. I start talking and somebody say something to me, and I go; ‘Okay’. 

Laura: Yeah. Yeah, maybe things aren't that bad. But I think you highlighted something that is important, which is like a sense of purpose for people. Well, everyone, of course, needs a sense of purpose. But especially when you're disabled, it is easy to get lost in like, the pools of ‘why me’ and this is so hard, and you just don't want to do it.  

Father: 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 before. He gave me ideas. So I thought about it, and I said; ‘That's an excuse’. And it was really strange. We had a show down in Holland, Michigan, and I had a panic attack. 

Laura: Oh, really? 

Father: Yeah. And uh just the way things were going that week, normally, I can kind of shake it off. But it kept one thing, boom, boom. 

Laura: Yeah. 

Father: So we get down there and they change the match. I’m like; ‘Oh God. I gotta figure this thing out’. I got in the venue, and it was darker than normal. And I said; ‘This is it. I'm gone. I can't see in the ring’. We got in the ring, and it was it was horrible. So, uh got downstairs and the guy that I supposed to be working with, he was he was just everything was 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. And uh I kind of broke down. 

Laura: Yeah. 

Father: And he said; ‘You want to you want to’? 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; ‘I'm not gonna go down like that’. I said; ‘we're gonna have the match’. And all everything inside of me was saying; ‘Run’. 

Laura: Yeah, like; ‘Don't do it, run, or…?’ 

Father: Don't, just leave. It's not you know, it's not worth it. But then I thought, all the people that I have encouraged, Father Time has encouraged and I said; ‘What would that look like for me to do that’? And this friend of mine, he prayed for me. For 10, 15 minutes later, I started shaking it off. And we kicked butt that night. 

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

Father: Just goes and I think it's because of all the adversities that I went through over the years. It was like I don't know if I can I get emotional thinking about it… I had, one time I tried to kill myself. And uh it was, it was bad. It was real bad. It was at one point in my life was I'd always thought that I was the reason for things going bad. And I just it just got into me. And I had taken a lot and I’d prepared. I was at work and I’d taken a bunch of stuff. I was working as an EMT, serving medications. And I had told uh I took the last ones because I'll get a bus and if that kinda bus get to the end of the line, I'll be so far gone that they didn't wake me up. 

Laura: Oh my gosh.

Father: So I said, I said; ‘Lord’, I said; ‘either somebody's going to have to stop me’. Or I'll see the day’. So the foreman is going; ‘Napier, Napier, get that next job’. I went. So I went over to the water fountain, put all the pills in my mouth…and his hand came in front of me. And I said; ‘God’? And uh he said; ‘What did you get’? A friend of mine, he's passed, he passed the first part of the year. And he said; ‘What are you doing’? He's yelling at me, right? I said; ‘What are you doing here?’ And he said; ‘I don't know. Someone told me to come over and check on you’. And I said; ‘I'm done’. He said, he opened my hand, and grabbed the pills. Next thing I know, he was taking me down, down to the hospital at the shop. And he kept talking to him. He said; ‘You better not go to sleep. Don’t you dare go to sleep’. And he uh he rode to the hospital with me. I don't remember nothing else after that. And that made us look crazy when I woke up the next day. I said; ‘God, I can’t even kill myself right’. 

Laura: What's your takeaway from it?

Father: You know, once I got to thinking about a lot of stuff, and I said to me, it was like, I found out all these people that cared about me. And that was even like, when I found out about this last, had a cancer before. And you know, I'm thinking; ‘Oh man, here we go again’. I was at the doctor’s office; ‘You got prostate cancer’. I was like; ‘Geesh, I don't want to deal with this stuff. I really don't’. 

Laura: Yeah. I get that.

Father: And so he 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, you know. 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 the guy at work and got my trainer. And he, 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, you know. It will be tough’. And I went to the ring, and I was heavyweight champion. And I took the ring, put the belt off. And this was legit, you know? 

Laura: Mhm.

Father: I set the ring down, the belt down in the middle of the ring. He asked; ‘What's going on’? I said; ‘I'm quitting tonight’. And this man, the crowd, they was like, and they started; ‘We love you’. 

It’s really, you know, this, you know, the Father Time. I'm listening to them, and I'm like; ‘Wow’. You know, I couldn't believe it. And it was; ‘We don’t want you to leave’, and just so much that was going on. And all the stuff that they were saying. And I said; ‘Shoot. Imma kick butt of this thing’

Laura: Yes. Turn that around. 

Father: I said; ‘Yeah’. This little girl came up to me. And this will get me so but she's, uh, she's she grabbed me, and I said; ‘Hey, what's going on’? She just looked at me. She's about five years old. She said; ‘I love you Father Time’. And I just stood there tearing up. And I was like; ‘Wow’. The judge said; ‘What do you want to do’? I said; ‘Man, I'm fighting again, you know’? And here we are again. 

Laura: Yeah. So did you do the radiation? 

Father: No, I was scared of that. The radiation. They said there's like a 15 year 10/15 year where 5, 5, 10 and a 15. And a lot of times, you do if you do radiation, uh you can't get surgery. 

Laura: Oh, okay. I didn’t know that. 

Father: Because the radiation, it kind of fuses the prostate with other stuff.

Laura: I gotcha. 

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

Laura: Okay.

Father: And radiation. And a friend of mine, he took the surgery. I mean, he took the radiation and he had to go back. So I was blessed. Yeah. After the fifth, you know, this is the fifth year. 

Laura: Congratulations. 

Father: Thank you. So nothing's, nothing's come back. I'm, I’m healthy. I know how after the, after the physical therapy after the surgery and uh I’m getting my strength back now because I had been offered that pandemic messed me up.

Laura: Oh yeah?

Father: Uh the, 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; ‘15 more’. And if it weren't for my male pride. 

Laura: You would have given up? 

Father: Yeah. But her name was Lisa; we've become really good friends. She uh she works at McLaren as a physical therapist. And what, what she did was she went way beyond… she actually came out to the gym and watch me train.

Laura: That’s awesome. 

Father: You know she made, she had special exercises to do, to strengthen me in the ring. 

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

Father: Yeah. You know so we became really good friends. Family and stuff. So… you know, there’s so many positive things that has come out of this. A doctor; Dr. Weisner, we, you know, I got his phone number. We call, we chat. 

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

Father: Yeah. You know, I found out something too. If I know a lot of this being blessed, because I always give honor to God because of it. Because of what I do, and I got so much information on the internet…I get treatment in hospital most people my age don't get. 

Laura: That's awesome. 

Father: It really is. 

Laura: Yeah. That's kind of my dream is to reach a status where I get really good healthcare. 

Father: That cost. I pulled up this [Father Time shows his large bicep]. I was about 18 and a half inches. So the doctor said; ‘Most people your age, we’ll just let it heal. But I'm sitting down relaxing for them to take care of it’. And normally, that wouldn't happen. 

Laura: Yeah. They just let you kind of deal with it, but they want to recuperate you. 

Father: Yeah. Just 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: And it's kind of a good, like, it shows that if you respect you and take care of yourself, like other people will respect you. 

Father: They really will… it makes a difference. 

Laura: Yeah, it really does. Awesome. Well, let me ask you the next question. And it might be wrestling but what do you like to do for fun? 

Father: Nothing. 

Laura: None, just chill? 

Father: I, 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 see you live in this type of area…you know? So in wrestling you're here. You know, you're just, you're larger than life. So in my preaching, I was always in this little area. But now when I preach, I'm more out, you know. I stretch out and…

Laura: Yeah. 

Father: When I'm expressing certain things in a way I interact with the with the congregation I interact with the crowd, you know?

Laura: Yeah. 

Father: It's just different, you know? So it has helped both of them…

Laura: Yeah, I can see that. 

Father: 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, like one of the teachers came up and said; ‘Were you preaching out there’? 

Laura: Yeah. 

Father: So I get I get I get out. I like to be able to touch people.

Laura: Mhm. 

Father: I like to be able to. If asked if you'd have been down when you came when I came in here, I’d said something that you get you laughing. 

Laura: Yeah, that's…

Father: You know?

Laura: a special skill. 

Father: I don't know, I just I just don't want you to bring me down. 

Laura: Yeah. I hear you. You're like I'm trying to stay up, I got enough problems. 

Father: Yeah, I gotta go home. 

Laura: Yeah. 

Father: Lemme enjoy this moment, you know? 

Laura: I hear that. Well, where are you gonna be like wrestling next? What's your next? 

Father: Going back down to, oh my good, Owasso. 

Laura: Okay, where's that? 

Father: Uh, are you talking about directions? East, going down East Corona, Corona Road, going east. 

Laura: Okay, gotcha. 

Father: No, West. 

Laura: Mhm. 

Father: Yeah. It’s West. I can't think of someone going west or going west. Shiawassee. 

Laura: Okay. 

Father: Around there. 

Laura: I’m not familiar. I'm from Chicago and now we live in Detroit. So I don't know my Michigan…

Father: Okay. 

Laura: geography. 

Father: It's about 25 miles from west of Flint. 

Laura: Oh okay. 

Father: And from there we go to uh Waterford. 

Laura: Okay. 

Father: So I think Owasso is a second as Friday, and Waterford is on the third. 

Laura: That's cool. I'd love to come to one of your matches sometime or see. Is it just like, will you perform and then other like wrestlers come in? 

Father: Yes. You're watching WWE. 

Laura: I like not many, many years. 

Father: Well that’s… 

Laura: [inaudible 41:05] is the last thing. 

Father: Well, that's what we that's us. 

Laura: That’s you? Okay. 

Father: Yeah. 

Laura: Gotcha.

Father: That's… 

Laura: cool. Well, that would be really good. What's the name of like the organization? 

Father: PPW; pure pro wrestling. 

Laura: PPW. I'm gonna write that down because I want to look into that. Maybe come see it some time. 

Father: Yeah. If you come, when you get there, ask for me. 

Laura: Okay. 

Father: And I'll come down and greet you. 

Laura: I’ll do that. 

Father: Or either ignore you completely. 

Laura: Sorry, if you're in the zone, I’ll respect it. 

Father: Just to mess with your head. 

Laura: Yeah, okay. 

Father: Judge say; ‘She wants to see you’. 

Laura: Yeah. 

Father: I say; ‘Who’? And I look at you, and I go; ‘I don’t know you’. 

Laura: You'll get a follow up email from me like; ‘Hey’. 

Father: I’ll turn that around. I just want to hear; ‘Yeah, you remember me’. 

Laura: Yeah. 

Father: Hey, come on.

Laura: Alright, good to know. Um alright, my last question is what change would you like to see for disabled people in the future? 

Father: Acceptance. 

Laura: Yeah. 

Father: You know, disabled people can do anything anybody else does. 

Laura: Mhm. 

Father: The only difference is we have to be trained. 

Laura: Yeah. 

Father: We have to have maybe certain accommodations. If those things if they can meet those requirements, we could sit and do anything. 

Laura: Yeah.

Father: You know, with, we're not going to be well, I'm not gonna say it now, but we might not be able to fly a plane. But… 

Laura: Yeah. 

Father: we can fly a plane. 

Laura: Yeah. 

Father: You know, especially with what's, what's going on now. There's some you know, there's so many. There's a lady that teaches photography, believe it or not. 

Laura: Yeah. 

Father: But she’s blind. 

Laura: That's amazing. 

Father: You know, there's, I mean, you name a job. 

Laura: Yeah. 

Father: And this one guy's a mechanic. He takes motor boat inches apart, the V8s. 

Laura: Yeah. 

Father: He take it apart, put it back together again. There’s blind carpenters. 

Laura: Yeah. 

Father: There's a blind uh there's a lawyer, there was a blind judge that was up here one time.

Laura: Uh huh. 

Father: So being accept us, being able to have business and be able to accommodate disabled people. 

Laura: Yeah. 

Father: Don't look at us like there’s like there’s something wrong with us.

Laura: Yeah. 

Father: You know? 

Laura: Yeah. I agree. 

Father: You know, so. 

Laura: And I mean, I don't know, I would think too, like a blind person would probably know how to do something better than a seeing person would. Like because you go about things in a different way and you probably know. Like, the person putting the engines back together. Like they probably know that engine more intimately than some seeing person who just…

Father: Yeah…

Laura: puts it together. 

Father: because he, he knows what it looks like in his mind. 

Laura: Yeah. 

Father: He feels it, he touches it. 

Laura: Yeah. 

Father: He knows how this part moves. 

Laura: Yeah. 

Father: You know, it's like, it's like a surgeon. 

Laura: Mhm. 

Father: If you look at it, look at a surgeon and he's finding trying to find a tumor or something or a gunshot… 

Laura: Yeah. 

Father: he's feeling with his fingers in the organ. 

Laura: Yeah. 

Father: Or in the intestines. When Reagan got shot, and one of the bullets was in his lungs, and they kept putting the ray x ray up… 

Laura: Yeah. 

Father: he could see it. But… 

Laura: Yeah. 

Father: he see it on an x ray…

Laura: Uh huh. 

Father: but he felt with his fingers to get it.

Laura: Yeah.  

Father: So even if a person is blind, once he knows the anatomy… 

Laura: Yeah. 

Father: it's there in his head. 

Laura: Yeah. 

Father: So it's like me. If you see me in a ring, my eyes are closed a lot. Because I know where the ropes are, I know where he's at. 

Laura: Yeah. 

Father: This time we were down in Owasso was kind of funny. Usually the guys make noise because there's so much ambient noise, you know? 

Laura: Yeah. 

Father: So, I did a I threw him across the ring.

Laura: Uh huh. 

Father: And the referee was next to him. I saw a white as you get white stripe; white black, right? 

Laura: Uh huh. 

Father: And so I saw a white flash, and I went to grab. I was gonna I almost grabbed the referee. 

Laura: Yeah. Because you thought he was the wrestler.

Father: Yeah. Then I heard the guy groan all of a sudden and I went to him and I snatched him up. 

Laura: Yeah. But that would have been a real plot twist if the wrestler goes after the referee. 

Father: We were at Genesee County Fair one time. It was they got these guys; nomads. I was in the ring and I was flipping on one of the guys. And so they came in; 2 of the guys came in and were jumping me. I was fighting them off. 

Laura: Yeah. 

Father: And some less some other guys came in to help me.

Laura: Uh huh. 

Father: Well, somebody grabbed me from behind. 

Laura: Oh. 

Father: So all I did, I turned around and I got attacked from Nelson. And I grabbed him and I just and it was a security guy. 

Laura: Oh. 

Father: Yeah. And I let him go. He was. 

Laura: Did you find out who was the security guard because he was like; ‘Whoa, whoa, whoa. I’m not a wrestler’. 

Father: Yeah, yeah, yeah. And I said; ‘Man, don't ever do that again’.

Laura: Yeah. 

Father: I said; ‘I didn’t know who. I thought you was another one of these nuts coming in the ring you know’? 

Laura: Yeah. 

Father: He said; ‘Man, I didn't know. I'm okay. I’m okay’. 

Laura: Yeah. 

Father: He was shaking like…

Laura: I bet. 

Father: It was funny though, afterwards. 

Laura: Yeah. 

Father: You know not at that point in time. Because I thought he would I thought he would have a seizure, I really did. That scared me. 

Laura: Yeah. That would, I love your responses though. Like you just jump into action, pick them up. That's hilarious. Alright. Well, that is the interview. Bravo. Thank you for sharing all of that.

Portraits of Persons with Disabilities: Amy Sundin Unger

Transcript:

 Laura:

What is your name?

Amy:

My name is Amy Sundin Unger. 

Laura:

Beautiful. And how old are you? 

Amy:

I am 36 years old.

Laura:

Woohoo, I’m 37.

And what are your preferred pronouns? 

Amy:

She/ they. 

Laura:

And would you mind sharing about your disability? 

Amy:

Sure. So, I was diagnosed with hypermobile Ehlers Danlos Syndrome, and I also have POTS. 

Laura:

I kind of suspected, well, I have a connective tissue disorder. And so I find, I don't have Ehlers Danlos, but I do a lot of research about Ehlers Danlos and I know POTS is a comorbidity of Ehlers Danlos. So based on the symptoms that you said-

Amy:

It’s so much fun!

Laura:

Haha, yeah…

Amy:

I’m like still waiting for that medication to kick in right now.

Laura:

Is there a medication for it? I didn't know that. 

Amy:

Yes. Yeah, I am on, I actually saw Dr. Grubb, down in Toledo. He's one of the people who actually runs a dysautonomia clinic. So, it took me forever to figure out, oh, this is where I should go. And yeah, they actually do have some treatments that people can use, and the one that I'm on right now is Corlanor. And that medication like changed my life. My fatigue was gone in two days. Two days! I couldn’t believe it. So, I'm hoping it continues to work. 

Laura:

Yeah, I’ll put the good vibes out there for you. 

Amy:

Currently waiting for it to kick in a little bit more.

Laura:

Well, thanks for meeting me this early in the day. 

Amy:

Totally, cool. 

Laura:

Alright, so you have EDS, POTS. When were you diagnosed with Ehlers Danlos?

Amy:

So, I was a late diagnosis. Yeah, I actually only got diagnosed about two years ago. Actually, it might have been only one year. I've been like, down this road for a while. But it's incredibly hard to get diagnosed, because there are so few providers who understand it, which makes it difficult. And thankfully, I have a primary care physician who was willing to coordinate with me and really just you know, go through a couple of different specialists and then eventually Beaumont genetics. It was Beaumont adult genetics clinic, specifically. They're not the same as the geneticist. The geneticists currently in the state seem to not be seeing hEDS [hypermobile Ehlers Danlos Syndrome] people. Yes, they will only see you if they suspect that you have a more severe form, such as vascular or one of the classical ones, because there's no known genetic marker. 

Laura:

Okay, for hEDS. 

Amy:

Yes, yeah. So, basically when I got my connective tissue panel done, when it came back, it was just like, oh, there might be some weird things here and there, but there was no known mutation. Yeah, so until they identify those giant genetic markers-

Laura:

Yeah, you're kind of stuck. So then how did the Beaumont, how were they like yes, you do have hEDS? How did they identify it?

Amy:

So they took a lot of family history from me, because we did discover which side of my family this came from. Yeah, just through my own research and stuff and talking to family members.

Laura:

Like who's bendy? Who looks really young despite their age?

Amy:

Exactly. Yeah, so they just took a complete history and my symptomology too. I have a lot of signs of it. So, they said the indication was Ehlers Danlos.

Laura:

Was that a huge relief when you finally got a diagnosis?

Amy:

A huge, huge relief, because then I can move on to the next steps. 

Laura:

Yeah, like actually treating it.

Amy:

Yes.

Laura:

How did you first identify EDS for you? How were you like, I think this might be what I have?

Amy:

I was having joint pain. Big shocker, right? So, lots of joint pain and I just kept googling things. And also, I knew I was hypermobile. It's very obvious in my body. I'm like a nine on the Beighton. So, my physical therapist even said like, you have some of the bendiest elbows I’ve ever seen. And they specialize in hypermobility, so I’m like, oh, I’m flattered.

Laura:

What physical therapist do you go to?

Amy:

There's a physical therapy place out in Sterling Heights. I believe it is called-

Laura:

Is it called Clegg and Guest?

Amy:

Yes.

Laura:

That's where I go. Do you know Melissa and Stan?

Amy:

Yeah, Melissa.

Laura:

Yeah, Melissa is awesome. She has taught me a lot about my body. I’m really happy to have her. Oh so cool!

Amy:

They were really like a big piece in me getting diagnosed as well because they were able to document things and they kind of pushed for me to go that extra step to get that diagnosis because I was like, I don't know if I'm severe or not. And then they were like, looking at me like yeah, you might wanna…

Laura:

Yeah, Melissa’s funny.  She kind of just gets right to the point. She doesn't sugarcoat stuff, which I enjoy. 

Amy:

It's fantastic. 

Laura:

Yeah, she gets right to it. Okay, well, that's awesome. glad that you found that. Yeah, I found them because like, we're from Chicago. And we just moved here like two years ago. And so I think I Googled like, hypermobility, Detroit, and that's what came up, like her Linkedin profile. 

Amy:

Yes, that's how I found her was like her LinkedIn profile. It’s such a bizarre way to get there. Yeah, that's funny. 

Laura:

That SEO on LinkedIn must be really good or something.

Amy:

Yeah, she set that profile up perfectly.

Laura:

Thank you, Melissa. Maybe we'll run into each other there. I'm on a break from PT right now, but I'm sure I'll be back.

Amy:

Yeah, you always need to tune-up for something.

Laura:

Tune-up is a really good way to put it. But yes, I will need a tune-up. Okay, so the POTS, how did that come about and when did you start to suspect that you have POTS as well?

Amy:

So that one, I started to suspect it when I was like getting kind of short of breath and winded and you know, these nice little smartwatches now, give you more information. So, I was noticing like, I'd be lying down and I'd stand up and I'd get dizzy and things like that. So, mine's a little more subtle, but yeah, there are moments where my heart rate just gets going. And I've had exercise intolerance since I was a kid. I could never run a mile, like I was always very athletic, but only to a point. Yeah, so there were all these subtle signs. I have like light sensitivity, nausea, just GI issues like the whole role.

Laura:

Okay, I was gonna ask if you had the GI issues.

Amy:

The whole dysautonomia checklist, I definitely had. And then I failed my tilt-table. But not like POTS failed it, like vasovagal failed it.

Laura:

Oh, okay, so then when you vasovagal failed it, I worked in a cardiology office for a little bit of time and they did tilt tables, so tell me what does it mean when you fail it in a vasovagal way?

Amy:

So, your blood pressure just tanks and you pass out. Yes, it was kind of comical because I was the first person who passed out on these four ladies at the tilt table. I knew it was gonna happen, because my IV kind of went wrong. And I was like, oh, shit, this is gonna be it. And then, sure enough they had me standing there and I was like, this is not POTS right now, like see you on the other side and I was gone.

Laura:

Were you in a hospital?

Amy:

Yeah, it was in a hospital setting. Yeah. 

Laura:

So you were like, well, someone's gonna come and get me. 

Amy:

Yes, I wasn't worried about it. They had the IV with all the saline and soft and just like I came to real quick after they put me back down.

Laura:

That's interesting. I know salt and hydration is really big for POTS, right? 

Amy:

Yes.

Laura:

Okay, yeah, I noticed the water bottle. (Laura gestures to Amy’s water bottle.)

Amy:

Yeah, giant water bottle. But I guess that's common for you know, you don't necessarily have to pass out from POTS, but a lot of times, I guess my understanding is it's frequently seen that like, you'll have vasovagal syncope and POTS. They don't exclude one another. Yeah,

Laura:

Gotcha. Interesting. Syncope. That's a term I remember from the cardiology office, that they used a lot.

Amy:

Yeah, so they diagnosed me through a poor man's POTS test. Where like, I got to the dysautonomia clinic and they took my seated heart rate and then I stood up and it immediately went to like 130 and they were like, yeah, you got it, congrats.

Laura:

So do you like this doctor in Toledo? He put you on this medication, so obviously…

Amy:

I see his physician's assistant, Beverly, and yes, it was a fantastic appointment. Like, yeah, everybody there has been super nice. They coordinate care out of state very frequently. 

Laura:

Wow. So they know that yeah, they're rare. They are doing something rare.

Amy:

Yes, exactly. It's an underserved community. They want to make sure people can get the care that they need, even if you are out of state. So, if I need lab work, they'll just mail it to me and I can go to a hospital up here to get it done, things like that.

Laura:

So the medication that they put you on, has that been difficult to access at all?

Amy:

For me? I got lucky. It was not difficult. My insurance company, they somehow miraculously were just like, yeah, this is fine. And it's like, it's like $40, on my insurance plan, and then the company actually has like a copay card, so, it gets down to 20. A lot of patients have experienced, like their insurance company, not approving it. So it's still like under a brand name. So it can be incredibly expensive and difficult to access for some people, which is really sad. Yeah and it's an off-label use. 

Laura;

Dang. So wow, then it is really surprising your insurance approved it for you.

Amy:

Yes. I was completely shocked. But yeah, they have a way where like their pharmacy at University of Toledo deals with this so often, they'll work on a prior authorization for you, and then they'll send it up to your local pharmacy.

Laura:

This clinic is awesome. What is that doctor's name? I'm gonna tell people

Amy:

It's Dr. Blair P. Grubb. And there's actually like he's done research papers on POTS like he actually is a published researcher with some other people. So yeah.

Laura:

Well, the next person I see who's got EDS and is like this POTS is killing me, I will…

Amy:

Send them there. His physician's assistant has lots of wait time. He has like a two or three year waitlist for him specifically, but his PA I got in within, I think three to four months. 

Laura:

Were you able to see the PA first, before him?

Amy:

I just see her exclusively.

Laura:

Yeah, I know sometimes it's like, you got to see the doctor first, and then you can start seeing other people in the clinic.

Amy:

Yeah, in this case, she has enough licensing to where she can actually like see patients and you're still under Dr. Grubb’s care, but it's like you know, he's just looking at the file instead of seeing you.

Laura:

Yeah, he just signs off and is like yes, I agree with that. Well, I'm really happy that has worked out for you. I know it’s always a challenge.

Amy:

Yeah, it’s a nice thing not experiencing like, the fatigue and daily nausea and stuff.

Laura:

Yes, and then the fatigue too, just from having a connective tissue disorder and like being so bendy like that-

Amy:

It's tiring. 

Laura:

Yeah. I can't imagine having POTS on top of that.

Amy:

I didn't realize how bad it had gotten until I took that second dose of the ivabradine, or the Corlanor and I was just like, something is vastly different in my body right now. Like, because fatigue lives in like your soul, and through like every molecule of you. Being tired just feels like it's in your eyes, it's such a different feeling. And that's gone and I just get normal-tired now. I can deal with normal tired.

Laura:

Did you just like clean your whole house after?

Amy:

I was like, I have to remember to pace myself. Yeah, I've been doing more basically. Like I can do the dishes and I can like come home from work, and I can go to the grocery store and still cook a meal and like whoa!

Laura:

Even that, I’m like…

Amy:

Yeah, like a small market. 

Laura:

Yeah. Oh yeah, I’m an Aldi fan, small market.

Amy:

Yeah, I like my small grocery stores. If it would have been Meijer it would have not been dinnertime after

Laura:

I know, I can’t with Meijer, it’s just too big. Yeah, totally agree with you. All right. Well, next question is what do you like to do for fun?

Amy:

So I actually still continued to do athletics. I do archery. So, I do it seated now because it was getting to be too much on my lower extremities, like just standing in that position. So I do seated archery. 

Laura:

Where do you do that? 

Amy:

Rising Phoenix. They're out in Troy. So it's a lot of fun. I shoot olympic recurve style. 

Laura:

Okay, what does that mean? 

Amy:

I have like one of those big bows. It has all like the stuff and the equipment looks really cool. And then I also do curling at the Detroit Curling Club.

Laura:

I didn't know Detroit at a curling club. Cool. Are you able to do that seated? How does that work? 

Amy:

It's funny because of the nature of EDs or at least how my body is with EDS. I can look like I'm able bodied when I'm curling. But afterwards, like I have to take extra steps. I had to wear knee braces. Yeah, you know, I have my KT Tape.

Laura:

I’m wearing both of those things right now. 

Amy:

Yeah, exactly. Yeah, and then I use my cane when I'm walking around in the club, because like when I'm on the ice, my cane is literally my broom. That's my third point of contact. So, I have better balance. more stability. 

Laura:

And then do you have to like, sit after ya- I mean, curling, you push it, right?

Amy:

I also like do a lot of the sweeping and stuff and yeah, it's very athletic,

Laura:

Oh, I forgot sweeping was part of it. 

Amy:

Yeah, it's just because like, my joints are moving, I can change the way that I'm standing very easily, like, you know, I don't have to load my joints in a certain way every single time. 

Laura:

Okay, yeah, so being able to move is helpful for you? 

Amy:

I still have to pregame with Advil and stuff, and I have to really watch what I'm doing. I've had to modify a little bit of my delivery, because of my hip. That type of stuff. I know Melissa and Stan are happy that I'm active.

Laura:

And I'm sure they helped you how to like figure out how to curl and do things that are best for you.

Amy:

Yeah.

Laura:

I love them. They're like better PTS than I got in Chicago, I have to say. You would think Chicago is so big that they've got that stuff like handled but yeah, really, hypermobility was a challenge there. But yeah, happy that we both like Stan & Melissa. Alright, so you do archery, curling, anything else?

Amy:

Yes, I make quilts. 

Laura:

Oh, cool! Okay, how was that with your hands and stuff? Because I know that can be harder for EDS, like, just the joints fatigue? 

Amy:

And I do notice that I have to kind of vary my tasks. When I'm doing it. I have to take breaks in between things, wear my ring splints, you know, that type of stuff. So just the usual strategies and like, be aware of when somethings flaring up and like, either modify it or stop. I have like an ergonomic rotary cutter. 

Laura:

Oh, I didn’t know they had those. 

Amy:

Yeah, it's very nice. 

Laura:

Do you have a picture of one of your quilts? I'd love to see them if you don't mind.

Amy:

I do have a few up on Instagram and stuff. Let me see if I can find some of the recent ones I did… (scrolling through photos on phone)... I have so many cat pictures. It's like an offensive amount of cat pictures. (Amy shows pictures to Laura and Brian)

Laura:

Oh wow, I love that! Awesome. Very well done.

Amy:

Thank you. That was actually like, I did it, it was like randomly generated. So, I did it where I rolled dice to determine what color I picked and everything and which orientation of the block.

Laura:

Oh, cool!

Amy:

Yeah, so that one was a lot of fun.

Laura:

Wow, well it turned out really well. 

Amy:

Thank you. Have like pictures of me like, ‘how did I tape my knee that day?’

Laura:

 Oh, yeah, I got those. 

Amy:

Yeah, so many tape pictures. 

Laura:

Melissa is really, she introduced me to KT tape and then…

Amy:

The leukotape? 

Laura:

You know, I have a latex allergy, so I can't do the leukotape, unfortunately. But your skin is fine with the leukotape?

Amy:

It is not fine. 

Laura:

Oh, okay. 

Amy:

Not fine with any tape really, but I can wear it for limited periods of time. And then I have to take it off, otherwise, yes, I become itchy and red and angry. I can't find the other quilt I was going to show you but I guess I'll just have to send it to you. 

Laura:

Yeah, please do. 

Amy:

I definitely did a zebra themed quilt. 

Laura:

Cool. (speaking to Brian) I don’t know if you know, but EDS, zebras that's their... I don't where does that come from? Do you know?

Amy:

Yes, so in medicine, they say, what is iit? It's like when you hear hoofbeats think horses, not zebras. So think about the more common thing it could be than the more rare thing. And yes, so in the case of EDS, and especially hEDS, we're starting to realize that it's a little more common than we thought, it's just under-diagnosed because of that kind of thinking. Yeah, that we see about us. 

Laura:

Absolutely. Yeah, that kind of thinking just angers my heart. Right. So quilting, archery, curling, all very cool hobbies. What do you do for work, if you don't mind me asking?

Amy:

So I'm a producer and project manager. I work primarily in advertising and animation. And then I'm also working on a project right now where we are setting up an animation and motion design education program that we're hoping to run in different studios and provide education to people, hopefully for free, that's the idea, so that people don't have to go someplace really expensive.

Laura:

Yes, the entry point there can be challenging.

Amy:

Yes. We want to break down those barriers. Yeah, you know, especially the financial barriers so we can get more diversity into the industry.

Laura:

Yeah, something every industry is *hopefully* trying to do right now. Alright, the next question is what motivates or inspires you? 

Amy:

Mmmm, that’s one of those tough ones.

Laura:

Yeah, making you dig down a little deeper, if that's okay.

Amy:

Like, I don't know I'm not I'm not one of those like, when people ask me those big grand questions, like a five year plan and stuff like that. Yeah, I roll out of bed, like I hope things are… I guess like, lately, what's been inspiring me is just like I've been engaging more in disabled communities, which is great, like talking to more people who have disabilities of varying kinds, mostly through the internet. And it's like, just having that kind of community like helps you keep going, because you're not on an island by yourself and like just having other people around you that like, get it. Like, “Sorry, I can't come out today” or whatever, because it's like “I'm exhausted”, or something like that. Like people who understand because they have flare ups too. 

Laura:

It's such a relief to meet other people who know those things. Especially because,  let me ask, like in your family, are you the only one with EDS or do you have the most severe like version of it? How does that shake out?

Amy:

Right, so I'm currently the only one diagnosed with it, but my mom did have a lot of the signs and symptoms, she just didn’t know. And my hypermobility is one of the most severe. I'm saying ‘one of’ because I found another person in the photo album, and there's a couple other relatives that have had these weird health issues and none of the doctors know what's going on et cetera. So I pursued it.

Laura:

Gotcha. Like, no one else in my family has Larsen's Syndrome, that's what I have, and it is, it's just challenging, like, literally no one in your life like, understands what you're going through. That's why it's so helpful to just meet other people and then you like, stop gaslighting yourself that way.

Amy:

It's funny because like, the more I talk to my mom about my symptoms, the more she's like, “oh, yeah, I've had that my whole life”, I’m like, “yeah, m-kay.”

Laura:

Yeah, “maybe you should see this doctor” or is she kind of at the point where she's like, “meh”?

Amy:

Exactly. And she's actually not in the same state. So, there is another doctor out there who does specialize in EDS, so if she wanted to, she could go and see that person, but she has some knowledgeable medical people that get it.

Laura:

That's nice. 

Amy:

But it was really wild. Like doing the Beighton with her. I'm like yeah, you totally have it.

Laura:

Yeah. Do you have the stretchy skin? I don't have that. 

Amy:

I’m a little bit stretchy. And then like my neck skin is a little bit stretchy.

Laura:

Yeah, I feel like I see it more in the neck.

I don't have the stretchy skin. I wish I did have all that collagen.

Amy:

I’m like the soft velvety person too.

Laura:

Nice, No free touches people.

Alright, so how did you like, in what way on the internet are you talking with other people? Is it like Reddit or Instagram or Facebook or all of them?

Amy:

Mostly Instagram. And then there is actually it's funny because there's a lingerie company that started up, Liberare, and they are doing adaptive bras. And they really focus on the disabled community. And they actually started their own sort of little social network thing on this platform that anybody can join, if you have a disability, even if it's just self identified. And it's like a neat little like, app, where you can like talk to people.

Laura:

Okay, I'm gonna have to look into that.

Amy:

Yeah, nice bras and stuff. Especially if you have trouble with shoulder mobility, they have like a front closure with magnets. It's really nice, like people with limb differences can easily use it and stuff.

Laura:

Didn't Skims try to do, I think they're trying to do adaptive clothing? Maybe, I don’t know.

Amy:

And the nice thing is they're getting input from that community that they’ve built. Like they ask people for feedback, and they actually just re-released a bra based on everybody's feedback.

Laura:

Oh, cool. Okay, so that sounds legit. If you're like creating your own community out of this, that’s pretty cool.

Amy:

Yep. They hire disabled people. They scout their models through that community. So they're getting like people with disabilities and a variety of them. 

Laura:

Awesome. I’m definitely going to look at that. All right, final question. And that's another heavy hitter. What change would you like to see for disabled people in the future?

Amy:

I mean, there's just so many issues with access, like that's the biggest thing. It's like the logistics of going someplace: Is there going to be a bathroom that's available to me? Are there stairs? Is the elevator functioning? Is there a ramp to get into the building? You know, even one of the buildings I'm currently working in, we kind of joke about this because there is a accessible toilet, like bathroom, at the top of three flights of stairs. Also just like the fact that I think people don't realize how varied disability is, you know, dynamic disabilities exist. It can change from day to day. And anybody can become disabled anytime and I think we'd like to, like block that out. And it's like, no, you you can- at any time.

Laura:

Literally, you could wake up tomorrow…

Amy:

So like, you know, understanding that accessibility benefits, everybody. You know, if you live long enough, the chances are you are going to be disabled at some point. 

Laura:

Yeah, you're gonna be really happy that this stuff is there for you.

Amy:

Very few able bodied 90 year olds out there.

Laura:

I can’t think of a single one. Yeah, access is huge. Yeah, absolutely. All right. Well, excellent. I think that we nailed it. Anything else you want the world to know? 

Amy:

No

Laura:

Ok, well we covered a lot. Awesome. Great job. Thank you.

A Celebration of Portraits of Persons with Disabilities

I had a wonderful month full of photoshoots and interviews with the disabled community. The photographs created this past month aren’t ready to be released quite yet. However, I do have some photographs from the first Portraits of Persons with Disabilities session in March 2020. Take a look at these lovely portraits and check back for more updates about the project.