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: 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.

Picture Day with Detroit Disability Power

As a member of Detroit Disability Power, I am always looking for ways to use my photography skills to empower the disabled community. This month, we partnered to put up a community engagement event we called ‘Picture Day.‘ The goal was to engage with the Detroit community and provide people with headshots they could use for professional and networking purposes. We had a great turnout and created some beautiful portraits. Check them out below! And if you would like to get your headshot taken, contact me here.

Portraits of Persons with Disabilities: Outtakes

Recently, I met with my new friend Chris. He volunteered to sit and be interviewed for my project Portraits of Persons with Disabilities, an ongoing series promoting disability visibility. (If you would like to volunteer, sign up here.) Here are some outtakes of his photoshoot. Chris is posing with his service dog, Winston, in Highland Park, Michigan.

Corporate Headshots

In today's professional world, everyone needs a head shot. Whether it be for your LinkedIn profile or company website, a professional headshot conveys a commitment to quality. It shows potential clients and employers you value your work and take it seriously. We offer corporate headshot services for individuals and teams. Portraits start at $75. Contact me today for more info.

While you're here, check out this series we did for 2 Point Perspective below! 

Headshots!

Tank & the Beez

Brian and Beth Blankenship are the talented duo behind Tank & the Beez. Their music has an americana roots sound with an old fashioned, soulful feel. Do yourself a favor and check them out here. Our shoot was inspired by Allister Ann and shot in Humboldt Park. Take a look!

Poster Art by Brian Blankenship