The following is a conversation about attitudes, access, and ableism before and after the passage of the Americans with Disabilities Act (ADA) between Laura and Wren Reeve, mother and offspring, aged 48 and 19. Both have multiple chronic illnesses (between the two, they deal with POTS, immune disorder, PTSD, anxiety). Laura is a middle school teacher and Wren is a non-binary, part-time college student and accessibility intern. Both are also musicians.
Wren: So can you share what things were like for you before the ADA?
Laura: Even though there were already laws in place to protect students with disabilities, there was still a lot to contend with. I have severe food allergies, asthma, and immune problems, which no one knew a lot about when I was a kid, so my mother had to advocate for me and for my sister, constantly. For example, she had to keep my classroom environment safe if I was going to go to school, check it for environmental factors that would cause reactions. She had to go on every field trip, I had to have my own lunches packed, I couldn’t share safely with anybody else, and my mom had to know when any class events involving food were happening so I wouldn’t be left out. And if I needed more time on a test or project, my mom had to talk to the teacher. She had to check my classrooms for mold/pollen levels, chemical cleaners, new carpet or paint, create or buy substitute paste that was safe for me to touch for art projects, and all that.
Wren: Did you get made fun of when you were a kid?
Laura: I remember being ridiculed a couple of times as I got older for needing extra time on tests or homework. Going to college was the first time I had to advocate for myself with a disabled student services office. A new concept. I applied for housing as a disabled student – the first time that word was ever used to describe me, part of my identity. I got help, like you, with note-taking (especially brain fog in the springtime), with test proctors. And we were fighting to get the ADA passed while I was in college, so suddenly it was a huge part of my life. Big celebration the day it was signed! But even after we still had to deal with prejudice and stigma on campus. People being told that someone was uncomfortable living with them because of mental illness, so they’d be forced to switch dorm rooms, or professors who still argued about it “not being fair” when we requested extra time on an assignment. We were educating others about disabilities through information tables and theater, but then having to struggle at the same time. The ADA didn’t change those things quickly. It didn’t necessarily take away any barriers to things we had to deal with on a sometimes daily basis. And people talked more in society about disability but it was still in stereotypes and ableist jokes a lot of the time.
Wren: I wonder if that’s because there’s all this information out there but a lot of it is wrong! I had disabled representation in my life because of you and my aunt, but I was in a small school full of mostly able-bodied students. So I had a lot of internalized ableism where I kept thinking that I was not disabled enough to use the word disabled. I thought I didn’t need that, when I really, really did. And that was really hard for me growing up. There were situations where I’d want to go on a school field trip and you and Dad would have to figure out if it was safe for me, accessible. Would I have asthma on the trip, or get dizzy, or what are we sending for food, and does one of you have to come on the trip with me? And I didn’t want that because I didn’t want to feel singled out.
Laura: But we wanted you to be able to participate.
Wren: Yeah, and I knew that, but I always thought, do I go on this field trip with one of you or have someone that knows what I need, or have to be the kid not going in the class or force myself to go on this trip without help? Not a good situation. Or maybe not mention the trip to you guys and not go, because in my brain at the time, it wasn’t worth risking what I saw as getting special treatment. If parents start getting involved, since it was a private school, and it was unusual because they usually just paid for tuition, you know? And you went to public schools when you were a kid. It felt like I was getting special attention and it was really uncomfortable. Like, my teacher would announce every year at the school’s Open House, “we have kids with food allergies in the class, so you can’t bring these certain things” and parents wouldn’t realize or understand that allergies in general can be debilitating. They’d bring things anyway and not get it. They’d complain it wasn’t fair to require them not to bring bug repellent that was dangerous for me. Basically, they would complain about the restrictions right in front of everyone including me.
Laura: That’s funny, because I’ve had more issues with adults now, post-ADA. People who like to tell me that I’d be “cured if you just did X, Y, or Z” (usually yoga or eating a lot of something that, well, could kill me). They get really annoyed because they heard something somewhere on TV or online and I’m telling them that I can’t do that thing safely. That I can’t possibly know the disabilities I’ve lived with for almost 50 years, that I can’t possibly be allergic to that thing, not really. And it turns into a thing about them where they’re insulted that I’m saying no. In their eyes, I’m being rude. Do you have the really snarky responses ready to go for that?
Wren: “Like, yoga’s great for you, but my joints will pop out of their sockets so my doctors say nope.” And they’ll be, like, “you can’t or you won’t?” as though you’re deciding to have disabilities, like it’s a choice. Do you remember the first day I used a cane? My PT guy showed me how to use it correctly and I got on the bus and within probably five minutes, some random stranger asked me if I really needed a cane or if I was just using one ‘cause it’s “trendy.” Ugh. People regularly come up and ask me why I’m using the mobility scooter, too, and why I really need one since I’m so young in their eyes. Because young to a lot of people means able-bodied, and maybe folks aren’t putting the idea of the ADA with youth, just older generations.
Laura: Implying you’re being lazy. I had the thing where, yeah, for me, adults were more ableist than kids. Like when at my old job, the 5th graders went to science camp for a week, and when we were supposed to walk along a cliff’s edge and climb down a really steep hill, I said no because of joint problems and vertigo. And a parent started bullying me, calling me a coward and a quitter, and saying I was setting a bad example for my students. I was setting a boundary and she didn’t like it.
Wren: I had the opposite experience, where when I got to college, it was a culture shock because there were all these accessibility things I had never gotten in school before. I was told those things were just for others, and they said these are for you. But when I was younger, I definitely was told to just push through things, but both kids and teachers as well. “You can do this, stop being lazy.” When I stood up for myself sometimes I got sent to the office. They wouldn’t call you guys, just talk to me and send me to another class for fifteen minutes or something. And I remember wondering why was being punished for something I literally couldn’t do. And that was after the ADA. And then a lot later, I got to use my physical therapy for credits for physical education, although there was a lot of arguing between the school principal and district about how that would work exactly. Getting the POTS diagnosis a couple of years ago was really important because then the previous couple of years of being told I wasn’t trying hard enough – that I was trying to get out of doing things even when I really wanted to be able to do them – my disability was on paper, was valid. Schools need a lot of paperwork to prove you’re actually disabled!
Laura: My mom had to write a note every day in case I needed to get out of physical education because they didn’t believe me unless I had one. That was before the ADA.
Wren: Yikes. Except for the time Grandpa wrote it and they thought you’d forged it because his handwriting was messy. (laughs)
Laura: Yeah. Just, no sense of people trusting me to know my own body.
Wren: I had people stand up for me sometimes because I couldn’t (literally sometimes). I’d have friends speak up in class and be, like, “They can’t really do that right now.” And the teachers would tell me stand up for myself even if anxiety or exhaustion made it hard, and they didn’t get it. I couldn’t, physically or emotionally right now. And this was again, after the ADA, right? And they didn’t know. They didn’t get it, what they were supposed to do or how to do it, not to isolate a kid or humiliate them because of a disability. That the laws say to give equal access. Didn’t you have to argue to get me extra time on tests? Some teachers still don’t get it, even at community college. I mean, I was stuck out in a hallway with a computer math game when I couldn’t do the math in 3rd grade because of my processing disorder, and that was decades after the law was passed! Access and compliance are two very different things, and I bring that up a lot when I’m doing trainings about inclusion now. Do people feel safe and welcome in the space? Do they have to ask you for things to make it safe or is it already part of the set-up?
Laura: What kinds of accessibility issues have you run into post-ADA?
Wren: So one of the main things I find is that when I go into buildings in my chair, especially where we live, is that the buildings are old enough that they were pre-ADA design but they’ve been updated enough, supposedly, so that they’re compliant. But what they’ll do is they’ll have one ramp for the entire building, the back corner, like near the dumpsters in the alley. Or in order to get to the main part of the building, you have to go all the way around to find an elevator, um, which is very frustrating.
Laura: And you’ve said that sometimes when you have to be on a panel or in a workshop that you arrive to find out that it’s on the third floor and there’s no elevator.
Wren: Yeah, all the time. An example was the other day, I was working on a project with a friend and they said, let’s work on it upstairs, and I had to take my cane up two flights of stairs…or sometimes if they have an elevator, it’ll be freight elevator for, like…
Laura: Moving cargo and freight?
Wren: Yes, um, so I find it “fascinating” that I’m considered “cargo”?
Laura: Like you said, a lot of places that claim they’re “ADA compliant,” but it’s really the absolute minimum, y’know – schools that are very much insisting that if they have students with physical disabilities, “we’d have a classroom they could use.” Their idea of ADA compliance is that if someone shows up, they fix it or change it, rather than have everything be compliant in the first place. Most of us with invisible disabilities, asking for accommodations tends to be stuff that other people don’t even think about or know about. So we have had to create our own accommodations – buying a stool to sit on in the classroom, redesigning the setup or tech interfaces. A kid with dyslexia can easily have a specially-designed font installed on their student laptop, but adults at staff meetings or trainings don’t use it on their presentations.
Wren: Ugh. Yeah, I’ve had to go into classrooms at my college where a teacher has to ask students to move desks around to make room for my mobility scooter. And then during the semester, I use a special pen from the access center that helps record my lectures while I’m writing but some days I can’t write and I have to have someone in the class take notes for me and I’ll have people glare or give a dirty look…like, “I’ve seen you write before, you obviously can do it” and I’ll just raise my hand to show them the tremor and say “I can’t today.” And that’s the thing; sometimes I need to use a certain accommodation and sometimes I don’t. And as a younger person who’s experiencing a workplace environment (and sometimes uses a cane, and sometimes a chair) and people don’t know, they’ll say “You can just do this, right” and I have to explain that no, I physically can’t. And then they see me with a cane or chair and immediately demand to know “what happened.” Same on the bus when I take that to get there.
Laura: It’s like there’s more awareness now, post-ADA of really obviously physical disabilities but still not a lot about other types. My school district has had multiple speakers at mandatory staff trainings who were really ableist. One guy said that he felt it necessary that every teacher get up early and walk for at least 15 minutes every morning before teaching. Another one snapped at those of us who chose alternative seating, and she wouldn’t allow anyone to type for note-taking, saying that it was “something that students with special needs could do, probably with permission but that we were grown-ups so..” Plus, the readings for the workshop were awful and ableist – all about mentally ill people being violent and dangerous. Not a great day.
Wren: People don’t grow out of accommodations just because they’re older. And like, when we got to a hockey game and there are the sensory kits with noise-canceling headphones and things. They’re for everyone, and they don’t ask. Just there to use if someone needs it, right?
Laura: When I was a kid, a lot of events would have been inaccessible unless an adult called ahead, made special arrangements or brought our own stuff. A huge, giant deal. So that’s definitely something that’s changed post-ADA that I like. It’s pretty frustrating for me sometimes, seeing the fight you have to have to make sure you have equity and basic respect. I suppose I sort of hoped after we fought so hard to get the ADA passed into law back then that it would make things easier for your generation.
Wren: My generation needs to both enforce it and refine it, but there’s a lot more to be done.
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