I meant to get this post out earlier in September, a little bit closer to the “new school year” timeline, but it’s still September so I’m saying it still counts! It has been quite a while since I was a college student – I graduated in 2010, which I know is (somehow) over 10 years ago now – but I thought it could be interesting to share a little bit about what it was like for me going to college as a disabled woman. After I started to write this, I realized it was getting long very quickly! So today I’m just going to focus on what it was like living on campus.
To start – just a little bit of background on me and my college experience. I went to Carnegie Mellon University – still in Pittsburgh, but about 30 minutes from my home. I lived on campus all four years, was in a sorority, a co-ed service fraternity, and was an editor on the student newspaper. So I was involved and active and, in many ways, like any other college student. But considering that I was one of the only students I saw using a wheelchair on campus (when I was an upperclassman, there was another woman who used a wheelchair who lived on campus too), I was also in many ways not at all like any other college students!
Before I was even admitted to any colleges, I knew that I wanted to live on campus. I just couldn’t imagine how I’d be able to get the full college experience while commuting – and for some people, that’s fine, but I knew that for me, living on campus was really important. I was not sure, though, how I was supposed to make that happen. I had never been away from my parents for more than a night when I slept over a friend’s house, and I had never had anyone other than my parents do any of my care needs. So I (and by I, I mostly mean my parents…) had to figure things out quickly!
Having Caregivers
This was, by far, the biggest adjustment for me when I went to live on campus. I mentioned that I had never had anyone other than my parents help me with my care before, and I didn’t really know how to train people to do it, either… but that’s something I didn’t realize until way too late. Because of the absurdly complicated, red-tape filled journey we went on to make sure my caregivers would be paid for – and also a little bit because we didn’t really know how to go about this – I ended up not meeting my caregivers until the day I moved in to my dorm my first year. I do not recommend this! The reality of it all hit me – the fact that I didn’t know whaaaaat I was doing – and I sobbed. Nonstop. For hours. I had no idea what to do – how to explain my needs to these strangers, and how to be comfortable with them doing some pretty intimate tasks! So we came up with a workaround – my mom came to my dorm for the first week or so that I lived there, every time there was a new attendant or a new part of my routine (showering, getting into bed, etc.) to show them how to do things. It was far from ideal (for my mom especially!), but it worked.
Even though we figured out the training process, it doesn’t mean things were just smooth sailing from there on out. Even though I used a home care agency to coordinate my attendants, rather than hiring people directly myself, I often ended up doing a lot of the logistical work when someone had to call off to try to find a replacement so I wasn’t left with no one. It could be exhausting – not only the extra work, but also the extra stress of constantly worrying if all the shifts would be filled. And sometimes, they weren’t filled, or people just wouldn’t show up. So I’d have to call my mom and ask her to come help me so I could use the bathroom / get into bed / whatever it was I should be doing at that time. Again – far from ideal.
There were other crises, too – the snowstorm that closed down the city and did leave me with no caregivers for over 12 hours, or the time I came back to my dorm after an all-night to find out that my attendant had just… left. I am so glad that I was able to live on campus for my four years at CMU – my life would have been so different otherwise, I really can’t even imagine – but college, in my experience, is not really set up for students who need caregivers.
Dorm Situation
Because I needed some extra privacy with my caregiver, I never had a roommate when I lived on campus – I had a single room the whole time. I didn’t hate this, honestly – I am an introvert and really liked being able to have a space that was just my own. It probably made it a little bit harder for me to meet new friends my first year, since I didn’t have the built-in connection of a roommate to hang out with, but I made it work. I made sure that my room was in a first-years dorm when I started, and not in an upperclassman dorm (which was also an option). It was really important to me, but it came with some tradeoffs. The bathroom for that dorm was a communal bathroom, shared with everyone on the floor. That wasn’t going to work for me, since my caregiver needed to help me in the bathroom and shower. So there was a private bathroom at the end of the hall of my floor that I had the key to. It worked, but going down the hall in a towel post-shower was not my favorite… nor was it my favorite when I had to throw a blanket over my lap between my dorm and bathroom because pulling my pants up/down could only be done while laying down! On the plus side, my room was the only one in the building with A/C, so it was quite the popular room to hang out in. After my first year, I moved to an upperclassman dorm and stayed there for the next three years. That room had it’s own bathroom, which was definitely much easier for me and gave me a little more privacy!
Because I can’t actually open doors myself, I had this fun little button that was basically like a garage door opener that opened the door to the dorm building and my dorm itself (while still keeping it locked so it wasn’t unsafe!). I also had extra keycards made for my attendants so that they could get into my room even if I wasn’t there (because I often wasn’t!), or so that I could ask them to go hang out somewhere nearby for a bit and then come back when I texted. Because having attendants share a small, dorm-room sized space with you can be tough! There is barely enough room for one person (especially when that person is in a wheelchair) – adding in another person can feel cramped. And when I wanted to hang out with friends, we didn’t want to feel like we had a chaperone sitting there, listening to us! So I’d often ask my caregivers to hang out at a dorm lounge or other nearby common space just so I could get a little bit of freedom.
But I could never send my attendants too far, or send them away for too long, either. They worked scheduled shifts at certain hours of the day, and I had to make sure I got done everything I needed help with (using the bathroom, getting my meals ready, taking a shower) while they were still working. I had to plan my class and extracurricular schedules carefully to make sure I could be back to my dorm when I needed to be. I loved living on campus, and my attendants made that possible, but it definitely took some extra work to make it happen.
