Portraits of Persons with Disabilities: Katie Curnow

“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?”

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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
An African American woman stands for a portrait. She has a cane in her right hand,, which is barely visible. She is wearing a red bluse with a black and white floral pattern. She has short curly hair and has a large smile across her face.

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: Mia Diaz Garcia Wells

An interview with Mia Diaz Garcia Wells. They share their story about living with Generalized Anxiety Disorder, Social Anxiety and Major Depressive Disorder. Mia shares their experiences with identity and self-expression, and desires more intersectional inclusivity in disability movements. They talk about coming out as disabled and LGBTQIA.

Read More

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.

DanceAbility at the Detroit Institute of the Arts

Detroit Institute of the Arts (DIA) hosted Detroit Disability Power’s DanceAbility earlier this week. You may remember last time we did DanceAbility at the DIA, we were in Rivera Court. This time we danced in the Great Hall. It hosts suits of armor and a tapestry made of bottle caps. It was a thrill to capture the dancers juxtaposed with these pieces. Take a look at the fun we had!

Portraits of Persons with Disabilities: Miri

Here is a sample of the work I’ve been doing on my project, Portraits of Persons with Disabilities. Every participant gets interviewed and their portrait made. Below is a portrait of Miri.

Miri’s portrait was shown at the Toledo Museum of Art in June as a part of the Disabled Women Make History (and Art) exhibit. It was also shown in the Madison Heights ADA Pride Celebration exhibit in July.

It is such a joy to capture the stories of these incredible people. I hope you enjoy learning about Miri as much as I did. Take a look!

Laura: 

What is your name, age and preferred pronouns? 

Miri: 

My name is Miri. I am 24 years old. I use she/her pronouns.


Laura:

Do you mind sharing about your disability?

Miri:

Sure. So, I have been chronically ill since I was one, less than one, with like a more severe form of atopic dermatitis, or eczema, which a lot of people have, like more like mild versions of and things that they grew out of. So, I had a lot of allergies and food intolerances throughout my life, still do, related to it. And then, the last few years, since about like, end of 2020, sort of 2021, I've been going through something called Topical Steroid Withdrawal, which is not something that is really recognized by the mainstream medical institution, but it's a result of using topical steroids, which is like, kind of like, the first like, thing that they prescribe you for a lot of things related to your skin, not just atopic dermatitis. But yeah, so, that kind of is manifesting as like, a way more severe form of what I've been going through, for the, for my whole life. And yeah, like I actually, my mom, actually, she's a nurse and she was always very, very against me using topical steroids. So, when I turned 18, I was able to make my own medical decisions. The doctor had always been like, you should try it, you should try it. I was like, okay, fine; let's try it. And then when the world shut down in 2020 was when I really started to take inventory of like, how, like, how dependent my body was on it. I was like okay, I need, I should probably start to cut it out. So, anytime I didn't use it, I would really, really suffer. And I wanted to wean myself off of it, which was kind of a blessing. It was like the perfect opportunity to. But um, yeah, so I've just been kind of recovering very slowly, since like 2021. 

It's a long journey. And I think it's, it's kind of, you know, I think it'll be like a long stretch ahead of me as well. Yeah, I try not to put any, like expectations or like timelines on that feeling and my physical well being.


Laura: 

How does the steroid withdrawal, if you don't mind me asking, how does that make you feel? How can you feel it manifesting in your body?

Miri:

Definitely, um, so, okay, so, there's kind of a few layers, but like, when it was, when I was like first, when I was first going through it, and when it was like, at its most severe, I say, I could not like, my thermal regulation. So like, my ability to regulate my body's temperature is pretty shot still, but it was even worse then. My like, my skin just like from head to toe was just flaking off and just like peeling, and like crusting over and stuff. So, that also meant that I was losing a lot of hair, because like, the skin wasn't able to, like really be healthy enough to like, produce or like, hold on to like hair growth. So, in, with all those changes, like it really affected me, like, emotionally and mentally for sure. Like, and still does, I'm still, you know, I'm still kind of working through the agoraphobia that was really, really present 2021, and last year, and like the social anxiety and just like feelings of, it's really it made me have to grapple with like my internalized ableism. And like, really, like, face it head on, because I just feel like I, you know, I just don't feel I found myself not feeling good about myself when I was looking a certain way, which I can't control or when I was not able to do certain things, especially like care tasks, as a woman like, A lot of those would like affect my sense of self worth and also like identity, like who am I? Since like, I realized those were so intertwined with like, what I conceptualized as, like what made me a valuable person.

Laura:

Yeah. And it's hard to when you're in your mid 20s, like I'm 37 now and I feel like it's getting like a little easier, but I don't feel like I was like, like your point of accepting like, alright, this is a disability I have and I just have to cope with it until I was 33, maybe? So, I'm very impressed that you are already like, this is what's going on and I need to deal.

Miri:

Oh, I appreciate that. I, to be honest, like I was, I was kind of grappling with the identity of disability from when I was in undergrad. So I graduated in 2021 from undergrad. But it was because when I started to need accommodations and your classes, they were like, well, you need to like, basically, like, apply and, like fill out this like form and go through this process under the students with Services for Students with Disabilities. And so basically, the labor was like, pushed on to me before I was really ready, which kind of made me like, grapple with like, am I disabled? Like, am I not? And so like, in a way it was, it was, it made me start to, like, have those questions and maybe, like, wonder, like, how, what my relationship with disability is, but it also was like, in a very, like, not ideal way. 

Laura:

Yeah. For me, it was like I was realizing I couldn't really work anymore. I was like, my brain works fine. But like, I'm just so exhausted going into work and sitting at a computer every day. And like, I feel like a lot of us are sometimes confronted with the disability identity a little harshly, or in a way we wouldn't prefer but definitely, yeah, accepting it is, life just gets easier after that. You're like, okay, well, these are the circumstances I'm dealing with. So let me go on living my life.

Miri:

Yeah, definitely. It was also, I missed this in the previous question, but I have lower back disc problems that like herniate now and then. And so that was something that happened first in high school. And so there was a period like junior year, when I was like, not able to, like get up or walk for like, a week and a half to two weeks. And I had to go through really strenuous, PT, and chiropractor and all of that stuff. And it's like, wild to think back to that time. Because even then, I was like, really unable to conceptualize myself like, as a disabled person, even when, like, I was having like, really limited mobility and like, chronic pain and like, a sense that's, that affects like mobility, which kind of is like a, I think, how a lot of people like conventionally like, conceptualize disability. But even then, I was like, so like, it, I don't know whether to call it in denial, but just like, not able to really like, like, see, like, the ways in which like, disability resonates with me, with my life.

Laura: 

How's your back now? Is it managed?

Miri:

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

Laura:

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

Miri:

It's like, like, cold, heat. There's honestly, not a ton you can do and so it's one of it's really like, yeah, it's hard to like, find like management strategies. Like, you know, I was scouring online and finding, like, groups online of folks that were dealing with Topical Steroid Withdrawal, as well. And it's just like a bunch of people that are just exchanging tips and tricks. All imperfect.

Laura:

What do you like to do for fun?

Miri:

What do I like to do for fun? I'm really getting back into reading, there's something that kind of took a backburner while I was in school, and now I'm still trying to get into it. What else do you like to do? Um, I really enjoy bullet journaling. That's something that keeps me grounded during the work day, I work mostly remotely. And so a lot of it is like computer work and stuff. And so I find that something really analog like, like drawing out a spread or just like, like putting stickers on a page is really grounding. I really enjoy singing, dancing, although that dancing has not been something I've been able to do as much the past few years. But it is something that I did enjoy a lot in undergrad and like would probably, will probably try to incorporate into my life slowly.

Laura:

Have you read anything good lately?

Miri:

Yes. Oh, that's a good question. Um, what have I read? lately? So the book I'm reading right now is called How to keep house while drowning.

I first found her on Tik Tok. Her name is Casey Davis. And she's like a licensed therapist, and someone that is just like, really open about Yeah, like care tasks, and how difficult it is to do really basic things. Like when you're like disabled, neurodivergent, etc. And so the book is actually written in a way that's like, really, like, it's like the intro, basically is like, maybe you don't have the time or the energy capacity to like, read this whole book. So there's like, an abridged way to read the book. And it's written for people that are neurodivergent. And and so it's been one of the few one of the books in like, maybe like, a month now that I've made, like, significant progress in, and yeah, so that's been, and it's been also really like validating to Yeah, like read, like, yeah, like, “hey, like, it's okay. If, like things like cooking and you know, keeping house and stuff like that is hard.” 

Laura: 

I think I will outsource it someday. 

Miri:

Oh, yeah. And that's like a valid thing too that she has touched on. But yeah, like that is probably my favorite thing I've read somewhat recently.

Laura:

Okay, next question is what motivates or inspires you?

Miri:

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

Laura:

The transition from student to working adult is so jarring. And then too when you're disabled, you're kind of realizing like, yeah, you're not your productivity, really. And you kind of see how harmful this whole, like hustle culture of America is. It's just not conducive to really anybody but especially somebody living with a disability.


Last question is what change would you like to see for disabled people in the future?

Miri:

I think that I can think about this question really, like, really, like, big picture, like long term as well as, like, kind of on a on like, a more day to day basis, I think I would want disabled people to feel like, just like, worthy, and like, just like a whole person at any at every point in their life, whether that's like, you know, due to all the fluctuations of like, life transitions, and, like health transitions as well. And like for that to really manifest day to day, I think something that I think that I kind of touched on that I was struggling with was just like my conceptions of self worth, when I was like, not able to do things or show up in certain ways. And that's still something I grappled with. And I, I know that that's like, I am definitely not alone in those feelings. And so just want like, would want yeah, that to be something that like, is able to be internalized by disabled people day to day, which is like really hard, right? Because a lot of that is really tied to like, you know, us living under capitalism, like white supremacy and all of that. So not to say it's like an individual like task or a task that falls on the individual but just wanting to be, feel, folks to feel empowered to like to feel like that they are worthy, because they everyone is. On like a grander scale, I guess, like not have, like, folks not having to do certain things to be like to be worthy of like, really like necessities for survival their that's like housing that like provides, like, that meets like all the, you know, checks all the boxes that a person needs to, like, comfortably live, or having a food and like, you know, having access to food that that we want to be eating. And that is like, you know, good for us. And having that be like an actually an accessible option. And like, all the ways that the word is, you know, encapsulates. Yeah, just like not having to, I guess fight for survival, I think is like the long term goal.

Laura:

Yeah, I agree. Well, that was great. Excellent interview. Thank you. 

To listen to the audio version of this interview, click below:

Life lately…

This has been quite the year for me technology wise. I’ve had hard drives fail over and over. I got a new MacBook and am having trouble with my USB-A adapter. I lost my beloved Sony camera…

It has been a great year for me professionally, however! I’ve shown my work at the Toledo Museum of Art, had my work displayed in a gallery for a month and will soon be shooting my first billboard! I’ve also continued to have great photoshoots and interviews with people around Detroit for my Portraits of Persons with Disabilities series. This is work I would love to show you, but cannot at the moment, due to the aforementioned adapter issues.

Looking to the future, I’ll be taking Carolyn Fong’s ‘Naturally Lit’ course in October. Stay tuned for some great off-camera flash photography coming your way in the fall. Until then you’ll just have to look through my portfolio or get lost in my instagram.

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.

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.

DanceAbility at the Detroit Institute of Arts

What could be cooler than taking pictures of disabled dancers surrounded by one of Diego Rivera’s most iconic murals? That question was rhetorical. Obviously, nothing is cooler than that.

Yesterday, I was able to take pictures for DanceAbility, a movement group inspiring dancers with and without disabilities to come together for movement improvisation. DanceAbility hosts classes online and occasionally partners with the Detroit Institute of Arts to host classes in its famous Rivera Court.

Check out the fun we had dancing in Rivera Court.

It was fun to watch the dancers take inspiration from the mural and use it to inform their movements. Watching my disabled peers create art surrounded by art was a real joy. Check out these moments captured yesterday.

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.