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: