An interview with Patricia Alexander. She speaks with Laura about her journey getting treatment for bipolar disorder and a chemical imbalance.
Read MorePortraits of Persons with Disabilities: Amy Sundin Unger
Transcript:
Laura:
What is your name?
Amy:
My name is Amy Sundin Unger.
Laura:
Beautiful. And how old are you?
Amy:
I am 36 years old.
Laura:
Woohoo, I’m 37.
And what are your preferred pronouns?
Amy:
She/ they.
Laura:
And would you mind sharing about your disability?
Amy:
Sure. So, I was diagnosed with hypermobile Ehlers Danlos Syndrome, and I also have POTS.
Laura:
I kind of suspected, well, I have a connective tissue disorder. And so I find, I don't have Ehlers Danlos, but I do a lot of research about Ehlers Danlos and I know POTS is a comorbidity of Ehlers Danlos. So based on the symptoms that you said-
Amy:
It’s so much fun!
Laura:
Haha, yeah…
Amy:
I’m like still waiting for that medication to kick in right now.
Laura:
Is there a medication for it? I didn't know that.
Amy:
Yes. Yeah, I am on, I actually saw Dr. Grubb, down in Toledo. He's one of the people who actually runs a dysautonomia clinic. So, it took me forever to figure out, oh, this is where I should go. And yeah, they actually do have some treatments that people can use, and the one that I'm on right now is Corlanor. And that medication like changed my life. My fatigue was gone in two days. Two days! I couldn’t believe it. So, I'm hoping it continues to work.
Laura:
Yeah, I’ll put the good vibes out there for you.
Amy:
Currently waiting for it to kick in a little bit more.
Laura:
Well, thanks for meeting me this early in the day.
Amy:
Totally, cool.
Laura:
Alright, so you have EDS, POTS. When were you diagnosed with Ehlers Danlos?
Amy:
So, I was a late diagnosis. Yeah, I actually only got diagnosed about two years ago. Actually, it might have been only one year. I've been like, down this road for a while. But it's incredibly hard to get diagnosed, because there are so few providers who understand it, which makes it difficult. And thankfully, I have a primary care physician who was willing to coordinate with me and really just you know, go through a couple of different specialists and then eventually Beaumont genetics. It was Beaumont adult genetics clinic, specifically. They're not the same as the geneticist. The geneticists currently in the state seem to not be seeing hEDS [hypermobile Ehlers Danlos Syndrome] people. Yes, they will only see you if they suspect that you have a more severe form, such as vascular or one of the classical ones, because there's no known genetic marker.
Laura:
Okay, for hEDS.
Amy:
Yes, yeah. So, basically when I got my connective tissue panel done, when it came back, it was just like, oh, there might be some weird things here and there, but there was no known mutation. Yeah, so until they identify those giant genetic markers-
Laura:
Yeah, you're kind of stuck. So then how did the Beaumont, how were they like yes, you do have hEDS? How did they identify it?
Amy:
So they took a lot of family history from me, because we did discover which side of my family this came from. Yeah, just through my own research and stuff and talking to family members.
Laura:
Like who's bendy? Who looks really young despite their age?
Amy:
Exactly. Yeah, so they just took a complete history and my symptomology too. I have a lot of signs of it. So, they said the indication was Ehlers Danlos.
Laura:
Was that a huge relief when you finally got a diagnosis?
Amy:
A huge, huge relief, because then I can move on to the next steps.
Laura:
Yeah, like actually treating it.
Amy:
Yes.
Laura:
How did you first identify EDS for you? How were you like, I think this might be what I have?
Amy:
I was having joint pain. Big shocker, right? So, lots of joint pain and I just kept googling things. And also, I knew I was hypermobile. It's very obvious in my body. I'm like a nine on the Beighton. So, my physical therapist even said like, you have some of the bendiest elbows I’ve ever seen. And they specialize in hypermobility, so I’m like, oh, I’m flattered.
Laura:
What physical therapist do you go to?
Amy:
There's a physical therapy place out in Sterling Heights. I believe it is called-
Laura:
Is it called Clegg and Guest?
Amy:
Yes.
Laura:
That's where I go. Do you know Melissa and Stan?
Amy:
Yeah, Melissa.
Laura:
Yeah, Melissa is awesome. She has taught me a lot about my body. I’m really happy to have her. Oh so cool!
Amy:
They were really like a big piece in me getting diagnosed as well because they were able to document things and they kind of pushed for me to go that extra step to get that diagnosis because I was like, I don't know if I'm severe or not. And then they were like, looking at me like yeah, you might wanna…
Laura:
Yeah, Melissa’s funny. She kind of just gets right to the point. She doesn't sugarcoat stuff, which I enjoy.
Amy:
It's fantastic.
Laura:
Yeah, she gets right to it. Okay, well, that's awesome. glad that you found that. Yeah, I found them because like, we're from Chicago. And we just moved here like two years ago. And so I think I Googled like, hypermobility, Detroit, and that's what came up, like her Linkedin profile.
Amy:
Yes, that's how I found her was like her LinkedIn profile. It’s such a bizarre way to get there. Yeah, that's funny.
Laura:
That SEO on LinkedIn must be really good or something.
Amy:
Yeah, she set that profile up perfectly.
Laura:
Thank you, Melissa. Maybe we'll run into each other there. I'm on a break from PT right now, but I'm sure I'll be back.
Amy:
Yeah, you always need to tune-up for something.
Laura:
Tune-up is a really good way to put it. But yes, I will need a tune-up. Okay, so the POTS, how did that come about and when did you start to suspect that you have POTS as well?
Amy:
So that one, I started to suspect it when I was like getting kind of short of breath and winded and you know, these nice little smartwatches now, give you more information. So, I was noticing like, I'd be lying down and I'd stand up and I'd get dizzy and things like that. So, mine's a little more subtle, but yeah, there are moments where my heart rate just gets going. And I've had exercise intolerance since I was a kid. I could never run a mile, like I was always very athletic, but only to a point. Yeah, so there were all these subtle signs. I have like light sensitivity, nausea, just GI issues like the whole role.
Laura:
Okay, I was gonna ask if you had the GI issues.
Amy:
The whole dysautonomia checklist, I definitely had. And then I failed my tilt-table. But not like POTS failed it, like vasovagal failed it.
Laura:
Oh, okay, so then when you vasovagal failed it, I worked in a cardiology office for a little bit of time and they did tilt tables, so tell me what does it mean when you fail it in a vasovagal way?
Amy:
So, your blood pressure just tanks and you pass out. Yes, it was kind of comical because I was the first person who passed out on these four ladies at the tilt table. I knew it was gonna happen, because my IV kind of went wrong. And I was like, oh, shit, this is gonna be it. And then, sure enough they had me standing there and I was like, this is not POTS right now, like see you on the other side and I was gone.
Laura:
Were you in a hospital?
Amy:
Yeah, it was in a hospital setting. Yeah.
Laura:
So you were like, well, someone's gonna come and get me.
Amy:
Yes, I wasn't worried about it. They had the IV with all the saline and soft and just like I came to real quick after they put me back down.
Laura:
That's interesting. I know salt and hydration is really big for POTS, right?
Amy:
Yes.
Laura:
Okay, yeah, I noticed the water bottle. (Laura gestures to Amy’s water bottle.)
Amy:
Yeah, giant water bottle. But I guess that's common for you know, you don't necessarily have to pass out from POTS, but a lot of times, I guess my understanding is it's frequently seen that like, you'll have vasovagal syncope and POTS. They don't exclude one another. Yeah,
Laura:
Gotcha. Interesting. Syncope. That's a term I remember from the cardiology office, that they used a lot.
Amy:
Yeah, so they diagnosed me through a poor man's POTS test. Where like, I got to the dysautonomia clinic and they took my seated heart rate and then I stood up and it immediately went to like 130 and they were like, yeah, you got it, congrats.
Laura:
So do you like this doctor in Toledo? He put you on this medication, so obviously…
Amy:
I see his physician's assistant, Beverly, and yes, it was a fantastic appointment. Like, yeah, everybody there has been super nice. They coordinate care out of state very frequently.
Laura:
Wow. So they know that yeah, they're rare. They are doing something rare.
Amy:
Yes, exactly. It's an underserved community. They want to make sure people can get the care that they need, even if you are out of state. So, if I need lab work, they'll just mail it to me and I can go to a hospital up here to get it done, things like that.
Laura:
So the medication that they put you on, has that been difficult to access at all?
Amy:
For me? I got lucky. It was not difficult. My insurance company, they somehow miraculously were just like, yeah, this is fine. And it's like, it's like $40, on my insurance plan, and then the company actually has like a copay card, so, it gets down to 20. A lot of patients have experienced, like their insurance company, not approving it. So it's still like under a brand name. So it can be incredibly expensive and difficult to access for some people, which is really sad. Yeah and it's an off-label use.
Laura;
Dang. So wow, then it is really surprising your insurance approved it for you.
Amy:
Yes. I was completely shocked. But yeah, they have a way where like their pharmacy at University of Toledo deals with this so often, they'll work on a prior authorization for you, and then they'll send it up to your local pharmacy.
Laura:
This clinic is awesome. What is that doctor's name? I'm gonna tell people
Amy:
It's Dr. Blair P. Grubb. And there's actually like he's done research papers on POTS like he actually is a published researcher with some other people. So yeah.
Laura:
Well, the next person I see who's got EDS and is like this POTS is killing me, I will…
Amy:
Send them there. His physician's assistant has lots of wait time. He has like a two or three year waitlist for him specifically, but his PA I got in within, I think three to four months.
Laura:
Were you able to see the PA first, before him?
Amy:
I just see her exclusively.
Laura:
Yeah, I know sometimes it's like, you got to see the doctor first, and then you can start seeing other people in the clinic.
Amy:
Yeah, in this case, she has enough licensing to where she can actually like see patients and you're still under Dr. Grubb’s care, but it's like you know, he's just looking at the file instead of seeing you.
Laura:
Yeah, he just signs off and is like yes, I agree with that. Well, I'm really happy that has worked out for you. I know it’s always a challenge.
Amy:
Yeah, it’s a nice thing not experiencing like, the fatigue and daily nausea and stuff.
Laura:
Yes, and then the fatigue too, just from having a connective tissue disorder and like being so bendy like that-
Amy:
It's tiring.
Laura:
Yeah. I can't imagine having POTS on top of that.
Amy:
I didn't realize how bad it had gotten until I took that second dose of the ivabradine, or the Corlanor and I was just like, something is vastly different in my body right now. Like, because fatigue lives in like your soul, and through like every molecule of you. Being tired just feels like it's in your eyes, it's such a different feeling. And that's gone and I just get normal-tired now. I can deal with normal tired.
Laura:
Did you just like clean your whole house after?
Amy:
I was like, I have to remember to pace myself. Yeah, I've been doing more basically. Like I can do the dishes and I can like come home from work, and I can go to the grocery store and still cook a meal and like whoa!
Laura:
Even that, I’m like…
Amy:
Yeah, like a small market.
Laura:
Yeah. Oh yeah, I’m an Aldi fan, small market.
Amy:
Yeah, I like my small grocery stores. If it would have been Meijer it would have not been dinnertime after
Laura:
I know, I can’t with Meijer, it’s just too big. Yeah, totally agree with you. All right. Well, next question is what do you like to do for fun?
Amy:
So I actually still continued to do athletics. I do archery. So, I do it seated now because it was getting to be too much on my lower extremities, like just standing in that position. So I do seated archery.
Laura:
Where do you do that?
Amy:
Rising Phoenix. They're out in Troy. So it's a lot of fun. I shoot olympic recurve style.
Laura:
Okay, what does that mean?
Amy:
I have like one of those big bows. It has all like the stuff and the equipment looks really cool. And then I also do curling at the Detroit Curling Club.
Laura:
I didn't know Detroit at a curling club. Cool. Are you able to do that seated? How does that work?
Amy:
It's funny because of the nature of EDs or at least how my body is with EDS. I can look like I'm able bodied when I'm curling. But afterwards, like I have to take extra steps. I had to wear knee braces. Yeah, you know, I have my KT Tape.
Laura:
I’m wearing both of those things right now.
Amy:
Yeah, exactly. Yeah, and then I use my cane when I'm walking around in the club, because like when I'm on the ice, my cane is literally my broom. That's my third point of contact. So, I have better balance. more stability.
Laura:
And then do you have to like, sit after ya- I mean, curling, you push it, right?
Amy:
I also like do a lot of the sweeping and stuff and yeah, it's very athletic,
Laura:
Oh, I forgot sweeping was part of it.
Amy:
Yeah, it's just because like, my joints are moving, I can change the way that I'm standing very easily, like, you know, I don't have to load my joints in a certain way every single time.
Laura:
Okay, yeah, so being able to move is helpful for you?
Amy:
I still have to pregame with Advil and stuff, and I have to really watch what I'm doing. I've had to modify a little bit of my delivery, because of my hip. That type of stuff. I know Melissa and Stan are happy that I'm active.
Laura:
And I'm sure they helped you how to like figure out how to curl and do things that are best for you.
Amy:
Yeah.
Laura:
I love them. They're like better PTS than I got in Chicago, I have to say. You would think Chicago is so big that they've got that stuff like handled but yeah, really, hypermobility was a challenge there. But yeah, happy that we both like Stan & Melissa. Alright, so you do archery, curling, anything else?
Amy:
Yes, I make quilts.
Laura:
Oh, cool! Okay, how was that with your hands and stuff? Because I know that can be harder for EDS, like, just the joints fatigue?
Amy:
And I do notice that I have to kind of vary my tasks. When I'm doing it. I have to take breaks in between things, wear my ring splints, you know, that type of stuff. So just the usual strategies and like, be aware of when somethings flaring up and like, either modify it or stop. I have like an ergonomic rotary cutter.
Laura:
Oh, I didn’t know they had those.
Amy:
Yeah, it's very nice.
Laura:
Do you have a picture of one of your quilts? I'd love to see them if you don't mind.
Amy:
I do have a few up on Instagram and stuff. Let me see if I can find some of the recent ones I did… (scrolling through photos on phone)... I have so many cat pictures. It's like an offensive amount of cat pictures. (Amy shows pictures to Laura and Brian)
Laura:
Oh wow, I love that! Awesome. Very well done.
Amy:
Thank you. That was actually like, I did it, it was like randomly generated. So, I did it where I rolled dice to determine what color I picked and everything and which orientation of the block.
Laura:
Oh, cool!
Amy:
Yeah, so that one was a lot of fun.
Laura:
Wow, well it turned out really well.
Amy:
Thank you. Have like pictures of me like, ‘how did I tape my knee that day?’
Laura:
Oh, yeah, I got those.
Amy:
Yeah, so many tape pictures.
Laura:
Melissa is really, she introduced me to KT tape and then…
Amy:
The leukotape?
Laura:
You know, I have a latex allergy, so I can't do the leukotape, unfortunately. But your skin is fine with the leukotape?
Amy:
It is not fine.
Laura:
Oh, okay.
Amy:
Not fine with any tape really, but I can wear it for limited periods of time. And then I have to take it off, otherwise, yes, I become itchy and red and angry. I can't find the other quilt I was going to show you but I guess I'll just have to send it to you.
Laura:
Yeah, please do.
Amy:
I definitely did a zebra themed quilt.
Laura:
Cool. (speaking to Brian) I don’t know if you know, but EDS, zebras that's their... I don't where does that come from? Do you know?
Amy:
Yes, so in medicine, they say, what is iit? It's like when you hear hoofbeats think horses, not zebras. So think about the more common thing it could be than the more rare thing. And yes, so in the case of EDS, and especially hEDS, we're starting to realize that it's a little more common than we thought, it's just under-diagnosed because of that kind of thinking. Yeah, that we see about us.
Laura:
Absolutely. Yeah, that kind of thinking just angers my heart. Right. So quilting, archery, curling, all very cool hobbies. What do you do for work, if you don't mind me asking?
Amy:
So I'm a producer and project manager. I work primarily in advertising and animation. And then I'm also working on a project right now where we are setting up an animation and motion design education program that we're hoping to run in different studios and provide education to people, hopefully for free, that's the idea, so that people don't have to go someplace really expensive.
Laura:
Yes, the entry point there can be challenging.
Amy:
Yes. We want to break down those barriers. Yeah, you know, especially the financial barriers so we can get more diversity into the industry.
Laura:
Yeah, something every industry is *hopefully* trying to do right now. Alright, the next question is what motivates or inspires you?
Amy:
Mmmm, that’s one of those tough ones.
Laura:
Yeah, making you dig down a little deeper, if that's okay.
Amy:
Like, I don't know I'm not I'm not one of those like, when people ask me those big grand questions, like a five year plan and stuff like that. Yeah, I roll out of bed, like I hope things are… I guess like, lately, what's been inspiring me is just like I've been engaging more in disabled communities, which is great, like talking to more people who have disabilities of varying kinds, mostly through the internet. And it's like, just having that kind of community like helps you keep going, because you're not on an island by yourself and like just having other people around you that like, get it. Like, “Sorry, I can't come out today” or whatever, because it's like “I'm exhausted”, or something like that. Like people who understand because they have flare ups too.
Laura:
It's such a relief to meet other people who know those things. Especially because, let me ask, like in your family, are you the only one with EDS or do you have the most severe like version of it? How does that shake out?
Amy:
Right, so I'm currently the only one diagnosed with it, but my mom did have a lot of the signs and symptoms, she just didn’t know. And my hypermobility is one of the most severe. I'm saying ‘one of’ because I found another person in the photo album, and there's a couple other relatives that have had these weird health issues and none of the doctors know what's going on et cetera. So I pursued it.
Laura:
Gotcha. Like, no one else in my family has Larsen's Syndrome, that's what I have, and it is, it's just challenging, like, literally no one in your life like, understands what you're going through. That's why it's so helpful to just meet other people and then you like, stop gaslighting yourself that way.
Amy:
It's funny because like, the more I talk to my mom about my symptoms, the more she's like, “oh, yeah, I've had that my whole life”, I’m like, “yeah, m-kay.”
Laura:
Yeah, “maybe you should see this doctor” or is she kind of at the point where she's like, “meh”?
Amy:
Exactly. And she's actually not in the same state. So, there is another doctor out there who does specialize in EDS, so if she wanted to, she could go and see that person, but she has some knowledgeable medical people that get it.
Laura:
That's nice.
Amy:
But it was really wild. Like doing the Beighton with her. I'm like yeah, you totally have it.
Laura:
Yeah. Do you have the stretchy skin? I don't have that.
Amy:
I’m a little bit stretchy. And then like my neck skin is a little bit stretchy.
Laura:
Yeah, I feel like I see it more in the neck.
I don't have the stretchy skin. I wish I did have all that collagen.
Amy:
I’m like the soft velvety person too.
Laura:
Nice, No free touches people.
Alright, so how did you like, in what way on the internet are you talking with other people? Is it like Reddit or Instagram or Facebook or all of them?
Amy:
Mostly Instagram. And then there is actually it's funny because there's a lingerie company that started up, Liberare, and they are doing adaptive bras. And they really focus on the disabled community. And they actually started their own sort of little social network thing on this platform that anybody can join, if you have a disability, even if it's just self identified. And it's like a neat little like, app, where you can like talk to people.
Laura:
Okay, I'm gonna have to look into that.
Amy:
Yeah, nice bras and stuff. Especially if you have trouble with shoulder mobility, they have like a front closure with magnets. It's really nice, like people with limb differences can easily use it and stuff.
Laura:
Didn't Skims try to do, I think they're trying to do adaptive clothing? Maybe, I don’t know.
Amy:
And the nice thing is they're getting input from that community that they’ve built. Like they ask people for feedback, and they actually just re-released a bra based on everybody's feedback.
Laura:
Oh, cool. Okay, so that sounds legit. If you're like creating your own community out of this, that’s pretty cool.
Amy:
Yep. They hire disabled people. They scout their models through that community. So they're getting like people with disabilities and a variety of them.
Laura:
Awesome. I’m definitely going to look at that. All right, final question. And that's another heavy hitter. What change would you like to see for disabled people in the future?
Amy:
I mean, there's just so many issues with access, like that's the biggest thing. It's like the logistics of going someplace: Is there going to be a bathroom that's available to me? Are there stairs? Is the elevator functioning? Is there a ramp to get into the building? You know, even one of the buildings I'm currently working in, we kind of joke about this because there is a accessible toilet, like bathroom, at the top of three flights of stairs. Also just like the fact that I think people don't realize how varied disability is, you know, dynamic disabilities exist. It can change from day to day. And anybody can become disabled anytime and I think we'd like to, like block that out. And it's like, no, you you can- at any time.
Laura:
Literally, you could wake up tomorrow…
Amy:
So like, you know, understanding that accessibility benefits, everybody. You know, if you live long enough, the chances are you are going to be disabled at some point.
Laura:
Yeah, you're gonna be really happy that this stuff is there for you.
Amy:
Very few able bodied 90 year olds out there.
Laura:
I can’t think of a single one. Yeah, access is huge. Yeah, absolutely. All right. Well, excellent. I think that we nailed it. Anything else you want the world to know?
Amy:
No
Laura:
Ok, well we covered a lot. Awesome. Great job. Thank you.
Travel Stories: Niagara Falls
A visual story of a spontaneous journey to one of the World’s Wonders, Niagara Falls!
Read MoreDanceAbility 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!
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Disabled love in honor of Dwarfism Awareness Month.
Read MorePortraits 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.
Travel Stories: Ireland
Travel stories and photographs from my time in Ireland.
Read MorePicture 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.
Magic of Light Workshop
Check out these images I created while attending the "‘Magic of Light” workshop in April.
Read MoreDanceAbility 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.
Behind the Scenes: Photographing Cocktails
This is my first Behind the Scenes post and it’s on cocktails. I’ve set out to improve my skills photographing these popular libations. I’m not much of a drinker, but I do love the aesthetics associated with the cocktail.
Today, I did a deep dive into the research, using this shoot by Carolyn Fong for Punch Drink as inspiration. I read a few articles, looked at online magazines and consulted some videos on YouTube. I found this video by Khandie Photography a great starting off point. I liked that it was an on location shoot with minimal equipment. Then for a more professional lesson I consulted The Bite Shot. There were a few other videos watched in there, but these were the most helpful.
What started as a fun experiment ended in a head-scratching, technical conundrum. I was able to collect a fair amount of data which I will show below, but as experimentation often does, it left me with more questions than answers.
So, what DID I figure out? HIGHTLIGHTS! Hightlight placement is very important when it comes to cocktail photography. Check out the photos I took below and pay special attention to where the highlights fall.
Winter Citrus
Nothing brightens a winter day like citrus. Fruit packed with the nutrients required to get you through the cold and gloomy winter season. Pair that citrus with a creamy avocado and you are set. Here is a visual ode to winter citrus and avocado!
Flo & Banjo
My dear friend Flo recently adopted her pup, Banjo. Like any proud mother with an eye for aesthetics, she wants him to get into modeling. Here are some photos we took to jumpstart his career.
A Real Life Horror Story: Hard drive failure
It happened again. I plug my external hard drive into my computer and my computer doesn’t recognize the hard drive. Unlike the past two hard drive failures, I am slightly more prepared for this one.
A few weeks prior, I backed up the hard drive to Amazon photos, an amazing service that comes included with your prime account. It offers unlimited photo storage, for no extra charge. ***If you are a photographer with an Amazon prime account, stop reading this and go back up your files.***
Another form of backup are the memory cards from my more recent photoshoots. This was a trick I learned from photographer, Kaye Ford. Always leave your photos on the memory card until the files are backed up and delivered to the client.
Moral of the story, backup your files, always! And back up to a cloud service, because external hard drives just don’t cut it.
Happy Halloween!
Volunteers Needed!
Currently seeking volunteers with disabilities to have their portrait taken for a series promoting disability visibility. Interested or know someone who might be? Sign up here!
Still Life
Experiments in still life.
Mushrooms from the Eastern Market. Cannabis from our neighbor. Peonies from Trader Joes.
Roe v Wade Overturn Protest: Detroit
On Friday, the Supreme Court of the United States voted to overturn the ‘landmark’ Roe v Wade decision. That same evening we met at the Theodore Levin Court House and marched through downtown Detroit. These are the photos from that protest.