Disability Visibility with Laura Suprenant and Brian Rohde

00:00 I am 36 years old. Today is February 25, 2023, and I'm speaking with Brian, who is my husband, and I am recording in grosse Pointe, Michigan.

00:11 Hey, Laura.

00:12 Hi, Brian.

00:13 How are you today?

00:14 Grand.

00:15 Grand. Oh, just grand. Just grand. So we're here to talk about disability visibility. And you identify as disabled, right? Yes, as I know. So have you always identified as disabled?

00:29 Yes and no. I was born with my disability. It's a genetic condition. However, I never really felt disabled enough to identify as disabled. I knew technically I did, but I was very much in the mindset of keeping my disability in the back of my mind and only focusing on what I could do and trying to keep up with my peers and not letting my disability really show up at any point in my life. I didn't really want any attention for it, and I didn't want it to guide my life in any way that I, in my mind, didn't see fit.

01:16 And what's your disability?

01:17 I have Larsen syndrome. It's a rare connective tissue disorder. And so I'm hypermobile, and I've had a lot of orthopedic surgeries.

01:26 How many surgeries?

01:27 Eleven surgeries as a result? Yep. And so a lot of my major joints are effective, and I walk with a slightly altered gait. I have clubbed feet. I have hip dysplasia, but also my arms don't straighten, and I have a fusion in my neck. Fused two through seven, so.

01:50 And when. When did you have the fusion surgery?

01:53 When I was three, I want to say. And those were three different surgeries.

01:57 And how many surgeries did you have when you were a kid?

02:00 Like, probably nine, because I've only had two as an adult.

02:04 Okay. And weren't most of those before you were three? Wasn't it? Yes, pretty much right away you came into this world. I came out getting surgeries. And. And so. And so that happened right away. And when did you first really start identifying as disabled?

02:20 Well, I will say I wore leg braces as a child, so my disability was always kind of hanging off of me, but I was always trying to take my braces off every chance I got. I lied to my friend's parents and would say that my parents allowed me to take my braces off so they would think it was fine. But I stopped wearing braces when I was a freshman in high school because I was done growing, so they said I could stop. And then I didn't really have any issues until I was 24. I started to have back pain and come to realize the back pain was because my foot broke, and so my gait was altered, and so I was experiencing a lot of discomfort in my back. Turned out my fourth metatarsal had dropped, and then at 25, I needed surgery on my right foot. My first surgery as an adult with Larsen syndrome.

03:22 Yeah. And that was right about when we met. That was right there. Right there. You really charmed me, disability aside. And. Yeah, yeah, I remember that surgery.

03:34 And we started dating, like, three months prior to that surgery. Wasn't very long.

03:42 And I know the thing I always remember is you walking around on crutches and how they were adjusted improperly, and they made your fingers go crooked. And then we adjusted them, and then your fingers went back to normal, which I think is just one of those things about Larsen syndrome that a lot of people. It's not at the forefront of it, and I don't even feel like people really talk about it. Even in your Larsen syndrome groups, you found. But it seems that there's an extra responsiveness to stress that comes with it, that you bend out of place easily, but also you seem to bend back into place. So, like, I know you wear your shoes, like, your orthotics and stuff, that seem to help you out, but then sometimes those get out of whack, and then.

04:29 That's true. And then we have a lot of.

04:31 Pain, and there's pain, and that's the whole thing. When did you first start getting your shoes custom made?

04:39 That was right after we got married, because I had been wearing Doc Martens, and I was just blowing through the souls of those so quickly and having to buy new doc Martens every three months while working at a job that did not pay me a salary that afforded new doc Martens every three months.

05:03 Not many jobs.

05:04 Yeah, no, they don't. And then I'm trying to remember, oh, how I had even found out about it. So I had been googling for a really long time, like, custom shoes. Custom shoes are so hard to find in the US. It's kind of insane. And I found this woman, Sarah, who was in Chicago, which is where we were living, and she was. Did make custom shoes in the past, but she had taken a break for a long time. So, like, periodically, I would check in on Sarah, see if she was making shoes again. And then I saw that she wasn't making shoes again, but she was starting a shoe making school. So basically, she was available. So I contacted her, said, you know, I got these wacky feet, and I need custom shoes. And she said, I'm not making custom shoes anymore. But my apprentice, Steve, he is. So come in, and I can fit you, and we'll send the drawings of your feet to him, and he'll make custom shoes for you. So that was, like, May. Well, we got married in May 2017, so that'd be earlier 2017.

06:11 That's right.

06:12 And then the shoes arrived after we got married. I want to say you didn't have. You.

06:18 Wow.

06:19 Yeah.

06:20 I forget that you didn't have the shoes yet.

06:22 Mm hmm.

06:23 When we got married, I mean.

06:24 Yeah, I know.

06:25 Because we started dating in 2011. Oh, yeah. Our pictures. You're right. You're wearing the doc Martens. This is quickly becoming a commercial for Doc Martens.

06:35 Actually, no, it should be a commercial for Steve, who makes great custom shoes.

06:39 But Steve has since stopped making shoes. But we convinced him to make your last pair. How many have you gotten from him now? Six or seven, I think.

06:48 I think five.

06:49 Five. It's all right. Yeah.

06:51 And so now we're on the search for a new shoemaker. So we're kind of at that challenging point all over again. But I got two leads on that that I'm trying to figure out.

07:02 We're gonna figure that out. We're gonna get there. We're gonna. We're gonna keep your. Your feet feeling good. And so, um. What?

07:11 Well, can I just say one thing more thing about those custom shoes? So I remember the day that they arrived, and I saw them and thought they were so ugly because they like custom shoes. I was so down about it.

07:25 It's funny, I remember. I remember they came in when you. You weren't home. I opened them, and I remember I found them, and I thought they were really cool. Yeah, I remember they were red. They were red. Yeah. They're a little, like, banana shaped, like your feet, but, like, they looked really cool. And I thought they were perfect, and I was really excited about it. I remember you coming home and you were not excited, and you were not into those shoes.

07:51 I was not happy about it. And I think they sat in the.

07:53 Box for, like, oh, they did quite a few days, and we finally got you to wear them.

07:58 I remember it was with my friend Nicole. We went out one day shopping. I was like, all right, I'm gonna wear the shoes. And then they felt so good. I was, like, on a high all day because I hadn't moved around without pain like that in so long. And then I didn't care how they looked anymore.

08:17 And now you get complimented on them all the time. People think your shoes are really cool, and they don't it's never, and I.

08:24 Don'T think they know that. Their custom shoes are, like, every now.

08:28 And then, there's a little bit of a. Maybe somebody's like, oh, I recognize those are like, let me compliment those, because I can tell. But I think mostly people just really like the shoes.

08:37 I think.

08:37 I really do.

08:38 I think you're right.

08:39 I like them a lot.

08:40 Yeah, I know. I really like them too. And actually, my orthotist, he's given me some feedback on my next pair of shoes, and I think they're going to have to look a little more orthopedic than they already do. So I'm kind of feeling sad about that.

08:55 But it's going to be okay.

08:56 It's going to work out.

08:57 Wait, so you're your orthotist? That's Rodney. Right. So he's been, I feel like he's been a really strong ally in this, because I know. I know a thing that's been a big struggle with this whole life with Larsen syndrome is finding people who understand it and who are empathetic to it. And also, I think the thing that Rodney really has is he has a curiosity about it, and he wants to. He wants to solve the puzzle. He wants to help you out. And I feel like there's a lot of doctors and folks out there who have. They have what they've learned, and they want to prescribe something that they already know. And Rodney's not like that. So he's been really great.

09:41 Rodney's awesome. Shout out, Rodney.

09:47 Who else has been really helpful?

09:53 Sometimes I hate to give him this credit, say Feldman. It is Doctor Feldman who helped my hip when I had my hip surgery. Geez, what was that, like two years ago?

10:06 That was January. January 2021. Yeah.

10:10 Okay. So he did a really great job on my hip surgery. He's someone who I found in the Larsen syndrome Facebook group. And just after meeting, I met with five doctors prior to meeting him looking for help with my hip. And he really helped me. Like, he's. He's very confident.

10:42 He's a surgeon. He was arrogant. He was. He was a very arrogant person. But he. I liked him from the beginning because he had operated on another young woman who has Larsen syndrome and did the same. The PA or the periacetabular osteotomy. Pao. And we knew that he was successful in doing that and was willing, actually got you hooked up with. What was her name? Do you remember now?

11:13 I know she lives in Israel.

11:14 She was in Israel. And I remember you were kind of communicating through her sister. Right. Because she spoke more English.

11:19 Yes. So actually, he did this surgery on this girl who's like, 21. I'm 36. And so, and she has Larsen syndrome. Feldman did her surgery, and she was like, I think you'd actually want to connect with my sister, who's also in her thirties, who also has Larsen syndrome. So then I started talking with her sister a little bit, and we kind of haven't communicated much in the past year, but it's just cool to know that there's other people with Larsen syndrome. So, and it's really good to know now that if I need another surgery, which I will, I can go see Feldman. Because the, just the angst and the drama and just the work that it took to find Doctor Feldman, someone who had operated on someone else with Larsen syndrome, was so hard because who did we see?

12:15 There was, there was a couple of doctors in Chicago. There was the guy in St. Louis we saw in Detroit.

12:23 Yeah.

12:24 In, we went to New York City.

12:26 Yep. Saw that guy. Yeah. And then, so those three, there's those three. Stover was in Chicago, and then doctor Feldman was West Palm beach.

12:37 Yeah. And he, and you found him on your own because the other guys we saw were they, they were recommended as second opinions from Doctor Stover. Right. Because he thought he was thinking either hip replacement or the PaO and wasn't sure. And so we went and got those second opinions. And if I remember right, neither of them were really all that sure of what to do.

12:59 No, it was, it was inconsistent.

13:02 So it really did not give us a lot of confidence that that's definitely been the experience of this whole thing of just, yeah, it's kind of, I don't know, it's, I don't know if humbling is the word, but just that it's just people doing jobs and there's more to be learned about everything. And fortunately, there are people out there who are really curious about stuff and find their niche.

13:31 Thank God. Yeah. But it's been hard.

13:34 It's been real hard.

13:35 And I really just, going into my hip surgery after my foot surgery, like we talked about earlier, which, the foot.

13:42 Surgery was good, it needed to happen. But I don't know that it was the greatest result because you still have pain in that foot. It's still fairly misshapen. There's that metal rod in there that gives you issues. And isn't your fourth toe still not like, touch the ground all the way? So there's a balance thing there.

14:02 So my gait is still very altered. Chronic pain really my chronic pain started after that surgery. So that's why finding really good surgeries has been important to me and why having surgery is really scary to me, because, I mean, there's no going back after that.

14:22 No, no.

14:24 Yeah.

14:25 So you found Feldman, Doctor Feldman, through your Facebook group, that Larsen syndrome Facebook group. Right. And so. And I feel like you impress me a lot with the way you use the Internet, because I just get angry on the Internet. I find things that I think I'm interested in, and then they upset me, and now I don't use it. I don't go on the Internet. But you have really found a lot of people out there who have Larsen syndrome and other similar disabilities. Like, is it Ehlers Danlos syndrome Yeah. You found a lot of those folks. I don't. I think it's really cool how you've made such really great connections with people and have actually met some of these people.

15:06 Yeah.

15:07 Through just meeting people. Just cuz. And also your photography project, right?

15:12 Yes.

15:13 The.

15:13 What is it that portraits of persons with disabilities project? Ppwd.

15:19 So. So, I mean, I know, but why did you. What made you want to do that? What made you start.

15:26 So I got my degree in photojournalism, and I feel like I got that degree, you know, wanting to do, like, journalism, really, just to make the world a better place, and, like, combine my talent for art with my love for helping people. And I hadn't really used my photography in that way prior to this project, but I felt like I didn't see people like me anywhere around me. I didn't know any other young people dealing with physical disabilities. It was really isolating, and I knew that they were out there because I was starting to connect with them on the Internet, like, trying to get advice from people on how to manage, like, live with a condition like this, and figured that they were also feeling really isolated and underrepresented as well. And so I started the portraits of persons with disabilities project. It started in China, actually, because I wanted to go big with it right away. And we were going to Hong Kong and Macau to see one of Brian's friends. And so I emailed some children's hospitals and said, like, this is what I want to do. Do you have any children or people who might model for me? And one person emailed me back, Magdalena.

17:04 That was her name? Yeah. Magdalena, yeah.

17:07 And she. Yeah, she was really great. Her and Christina, her assistant, they showed us around the hospital, and we took pictures of those kids, and that was really wonderful. And then we since came back to the US did the portrait series with some people I connected with online in Chicago, and that started in March of 2020.

17:33 I was going to say we did that, like, the week before everything shut down. You had that studio space, and we did three different sessions. Right. And it was. One of them had Ehlers Danlo.

17:45 There was, um, someone had a spinal cord injury.

17:49 Right.

17:50 Genevieve. And then, uh, Sarah had crps.

17:53 Right, right.

17:56 No, I'm sorry, not Sarah. Susan.

17:58 Yeah.

17:58 I have another friend named Sarah who also has crps.

18:01 Yeah. And we took her picture, too. She's the most recent one that we did this on. So, um, well, I think it's really cool, and I'm really happy. We've made a lot of connections with a lot of people, and I love that we've gotten to meet people and, uh, hear really interesting stories, and it's very cool.

18:19 Yeah. And it's great to connect with people and especially people, I think, with physical disabilities and I'm sure, with any type of disability. But you do. Like, I hate to use this word, but you feel ugly because you never see yourself, and you're told stories about, like, the ugly duckling and quasimodo and all that stuff, and you're like, I'm one of those people. People. Like, I am misshapen. And so I like your shape, but it's really nice to connect with people and to, like, celebrate your shape and be like, no. Like, you're incredible. You're one in a million. Like, no one else looks like you. And that's such an incredible gift. And really, we should be celebrating that and not feel like we have to hide it. So it's nice to connect with people and get to, like, remind myself of that and remind them of that at the same time.

19:20 Yeah.

19:20 So, yeah.

19:22 Yeah, I agree.

19:23 That's.

19:24 That's awesome.

19:25 Thank you. So if you want to do PPWD, send me an email. Floorsupernodmail.com.

19:33 That'S great. Great little plug there.

19:36 Thanks.

19:37 That's great. Great.

19:38 Yeah. Was that a good spot?

19:41 I think we did great.

19:42 All right.

19:44 You were my favorite part.

19:45 Thank you. You were mine.