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When Tobias Ashlock first connected with Tracey Schalk, he found more than just someone who understood what it was like to live with arthrogryposis multiplex congenita (AMC), he found a mentor who had navigated many of the same challenges he was facing as a high school student with the rare condition that affects joint movement.
In this episode of WYSO Youth Radio, the recent Ponitz Career and Technical Center graduate interviews Schalk, a disability advocate from Findlay, about their shared experiences with AMC. Their conversation touches on everything from school accessibility battles to finding life-changing community support, offering a window into how mentorship can help young people with disabilities envision their futures. Through candid discussion about daily adaptations, educational challenges, and the importance of disability community, both voices illuminate the resilience required to thrive with limb differences in a world not always designed for accessibility.
Tobias Ashlock: Can you introduce yourself for people who don't know you?
Tracey Schalk: Sure, my name is Tracey Schalk and I live in Findlay, Ohio and I work for an agency that supports people who have developmental disabilities. I am a caseworker slash quality assurance caseworker.
Tobias: So, you've lived with AMC for a very long time, but did your family know anything about AMC when you were born?
Tracey: No, not at all. It was a total surprise because I'm 36. So the ultrasound didn't show a thing. After I was born, they took me to a children's hospital like an hour away. The pediatrician at the hospital had seen cases of it when he was in residency. So my parents actually knew within like 45 minutes what it was, and a general idea that I was gonna live.
Tobias: What was school life like in elementary school?
Tracey: So I grew up in a very, very small town here in Northwest Ohio. So I was only one of like 32 kids in my class. And my elementary school was a really, really old building. So it was really hard from a physical standpoint because it was three levels. And so every year, they had to move my classroom from whatever floor it was on to the floor that I could get to. Being the only one in my class with a physical disability was really hard. There were no wheelchair users in my elementary building at all when I was there. So that was hard.
Tobias: Were there differences from you managing elementary school compared to, like, middle or high school?
Tracey: So when I went to middle school, they had installed an elevator in that building, not just a ramp. So I could actually go up and down from, you know, from classroom to classroom as I was supposed to at that age. So it was a little bit easier from a physical standpoint. And, um, but junior high is just hard. Like it's just that awkward age of life that, you know, I think the disability made it a little bit harder, but I don't think it was the sole reason why junior high is just tough.
To say that was a life-changing experience is an understatement.Tracey Schalk
Starting my period. Yeah, that, that whole time of life, I would never want to relive. And it was from a physical standpoint, my mom didn't really have anybody to bounce ideas off of how to help me manage it, because there was no AMC support, right? She didn't have any other moms of older girls to help me navigate the physical part of, you know. Pads and tampons. And now they have the cool things called period underwear, which were totally not a thing when I was growing up. So yeah, technology. And then when I went to high school, my school district actually got a brand new building. So it was all one level, no steps, no elevator. So that was pretty great.
Tobias: Did you end up going to college?
Tracey: Yep, I went to Ohio State. I started off at the regional campus of Ohio State Marion, and it turned out to be like a super great option because one, I got better scholarships there, and two, it was much more accessible than the main campus. I got a bachelor's degree in political science and disability studies.
Tobias: Going into, like, support group stuff because it's become, like, a really big thing now, when you found the support group, was it a good thing for you?
Tracey: Oh, it was fantastic. So I was a senior in high school 18 years ago. My English teacher didn't have anything for us to do. So I went over to the computer and searched arthrogryposis multiplex congenita, and up popped the very first AMC convention, as they called it then. I don't know if I printed the information, but I took it down. I went home and I told Mom that we were going. Like I didn't ask her, I told her we're going to this convention because it was only a five-hour drive to Chicago, and I can easily drive five hours.
She kind of looked at me with shock because she wasn't a real big fan at the time of connecting with other people. I think she still had a lot of trauma from when I was born and they told her horrible things about, you know, AMC and... but she went and we had a great time and it was life changing to say the least, I remember walking into the hotel for the first time, I was absolutely like...I think I gasped like somebody with hands like mine was basically what it was. And someone who walked, you know, pretty similar to me. So yeah, to say that was a life-changing experience is an understatement.
Tobias: What was the significance for you of the yearly conference gathering?
Tracey: I have gone to almost every conference. The only conference I missed in the last 18 years was in 2010. And it's now like the thing that mom and I do every year. And it's just that one time a year where I can be in a space and I'm not different. There's nobody staring at me because I'm different. Everyone moves like me, and they eat like me. You know, we can talk about things that I can only talk to other people about who live with limb differences.
Tobias: Really powerful stuff.
Now I'm gonna open the floor to you to talk about your life now, accomplishments, your husband, if you'd like, anything.
Tracey: Let's see, so I'm married. We've been married for five and a half years, and we've been together ten and a half years. He has AMC too... a little bit, I wouldn't say more mild. I would say it's different, so even though I look more affected in my arms, I'm much more capable at doing things in certain respects than he is, and vice versa. I can't reach below my knees very well, so I can't pick things up off the ground, can't kneel at all, where he can kneel and he can reach the ground a little bit easier, but he can't lift anything with both hands. So he has one arm that almost just doesn't, like he can lift it away from his body.
So I actually get the hot stuff out of the oven because my arms work. So we make a good team. I put his socks on sometimes, he ties my hair back, you know, we take care of each other in that way. He'll shave my legs, you know. I'll shave his face sometimes if he doesn't want to. Or we do each other's toenails, that's some, because we can't, we, neither of us can reach our feet to do that. So we play off each other's strengths where we can to make life work.
Tobias: Has being with your husband helped you accept the fact that you do have AMC, which does sometimes impede your abilities?
Tracey: Oh yeah, I would say being with John has been very, what's the word I'm looking for? Comforting, I guess, because I'm never alone. Like I wake up every day, and there's always somebody who looks like me, moves like me, has limitations we both have to contend with. It's not just a one-sided thing; I'm the one who always needs help. So it kind of makes the partnership a little bit more. Equal in that regard. We equally have to rely on each other for specific physical things, and if we weren't both disabled, that would not be the case.
Tobias: That's... Wow. I didn't think about it from that standpoint.
Tracey: I don't know what it's like to be married to someone who's able-bodied, and people who are in relationships where one person is not disabled and one person is, I've been told that they make it work. A person who has physical limitations may pick up more of the slack when doing finances or making calls. The grunge of life, right? But from a physical standpoint, John and I are equal.
Tobias: Do you have any final thoughts before we wrap this thing up?
Tracey: My final thought would be, don't let, if you have AMC, don't let it stop you. We live in a great country that gives you all kinds of services and accommodations if you know what doors to knock on and keep knocking on them to get the things that you need to make life, to give you the life that you want, right? It might be a fight, but it's worth it.
Tobias: Thank you so much.
Tracey: You're welcome.
Thank you to Joanne Casale, the Media Arts teacher at Ponitz Career and Technical Center, for making this story happen. WYSO Youth Radio is produced at the Eichelberger Center for Community Voices at WYSO. WYSO Youth Radio is made possible by supporters like you, the Ohio Arts Council, and the Virginia W. Kettering Foundation.
