I actually had a different “Disabled in College” post that I planned to write today. Then yesterday, I read all the news / discourse about John Fetterman’s request for closed captioning during an interview, and knew that this was the post I needed to share today instead. This is probably a less-obvious part of being disabled in college, but I want to talk about what it was like for me to ask for accommodations.
College certainly wasn’t the first time I got accommodations in my classes. For all of my years in school, my parents and I had a yearly meeting with the administration to go over my IEP (individualized education plan). In these meetings, my parents would explain a little bit about my life with SMA, and we’d also talk about what things I might need to make my day go smoothly. This meant we’d explain that if I got sick, it could get serious quickly and it could mean I’d miss classes for a week rather than just a day or two. I was allowed to request to have friends in my classes so that they could help hand me my papers, books, and things like that. I was allowed to leave classes five minutes early in high school, so that I didn’t have to deal with the crush of students in the hallways while I was trying to get from one end of school to the other. But whenever these meetings happened, while I was there, it was really my parents leading the conversation. They were my best advocates – willing to let the school know what I needed.
When I got to college, it was the first time that I was ever in charge of the accommodation process myself. Rather than having an annual meeting where I sat down with the disability services office and my professors, it was all up to me. I had to reach out to the disability services office, I had to know what accommodations I needed, and I had to be ready to advocate for my needs. And it turned out that I wasn’t really… I wasn’t ready.
Disability resource offices vary widely across colleges and universities in terms of what services they offer and what services they offer. For me, I met with them once before I started school – maybe a month or two before – to get to know the campus, work out my dorm situation, and learn more about how life would work for me on campus. And then I also met with them each semester to talk about accommodations that I’d need for those classes. I was pretty comfortable with the very first meeting, because we went over a lot of physical accommodations. I knew I wanted my dorm room and bathroom to be accessible, I really needed their insight on personal care attendants (though they were definitely not experts), and wanted to make sure that in general, the campus would be accessible for me. And in many ways, I was incredibly lucky, because the head of the disability resource office at that time was a man who used a power wheelchair. So I trusted that he, on some level, understood my needs. And overall, I do think those physical accommodations were handled well and worked out for me.
But I really struggled with the accommodations that I was entitled to for each of my classes each semester. And by struggled, I mean that largely, I just… didn’t request accommodations. I was so incredibly uncomfortable with being seen as different, or with sticking out any more than I already did. So even though many of my classes my first year were in rooms with stadium-style seating and chairs that had flip-up desks, I didn’t ask for a table that I could use – I just wrote on my lap, on top of a precarious pile of notebooks and my laptop. Instead of making sure the doors to my classrooms were left open so I could actually get in and out, I would just hang out by the door until someone walked nearby and ask them to open it. Instead of requesting extra time on exams because my hand can get tired after writing a lot, I just suffered through it because I felt like no one had enough time to finish exams, anyway. And when I got sick, which I always did because I wasn’t sleeping nearly enough and college is full of germy students spending all their time together, I appealed to each of my professors independently. And I got lucky – my professors were incredibly understanding. It probably helped that my disability was extremely visible, and that it was clear l wasn’t “making up” my need for accommodations. I know that others have not been so easily believed.
Looking back on this now, as a 34 year old woman, it makes me a little bit sad. I’m so much more comfortable now asking for accommodations (most of the time at least), but it can still be awkward. I wish 17 year old me had the confidence that I do now – the understanding that accommodations are something that I’m legally entitled to, something that gives me the same access that other people already have. I’ll always wonder a little bit what my four years at school might have looked like if I was willing to be more vocal!
When I talk to disabled young adults or college students, this is always the thing that I stress the most. Be upfront about your needs – no one knows better than you. You have to understand that no one is going to offer you accommodations unless you ask for them! I wish that we made it easier for people to get accommodations, honestly – in college and beyond. But for now, it’s so important to not be afraid to tell people what your access needs are. It turns out it’s not embarrassing – it’s empowering.