Back to School Reflections

At the end of last month, I had the chance to talk to the incoming first year students of Carnegie Mellon’s engineering program about the importance of diversity in STEM. It was truly wild to be on that end of orientation events – it forced me to sit with the reality that my own orientation was fourteen years ago! It just doesn’t seem possible.

Heather, a white woman in a power wheelchair, is wearing a leopard print smocked dress and brown pointy toe flats from Sarah Flint. She's wearing sunglasses and has a brown purse hanging from her controller. She's in front of a blue wall that has a sign reading "Donner Hall" above her head.
Heather, a white woman in a power wheelchair, is wearing a leopard print smocked dress and sunglasses. She's by some rocks and trees and bushes - a landscaped walkway.

After the panel was over, I had the chance to walk around the campus a little bit. It was over 90 degrees out, so I didn’t do a full tour, but I did get to walk by my first year dorm and the dorm I lived in the other three years and a few of my other favorite places on campus. It had me feeling all sorts of nostalgia for my own time at CMU as a student, and made me think of my own first year there especially.

It’s hard for me to put into words how big of a change my time at CMU was for me. Before I moved into my first dorm room, I had never had anyone other than my parents do any of my personal care. I’d never spent more than a night away from my parents, and those nights were just sleepovers at friends houses where my mom wasn’t more than a 10 minute drive away at the most. We didn’t really know that we could have been getting personal care attendants (PCAs) before college – it was just never really mentioned to us as an option.

So it felt a little bit like being thrown into the deep end when I had to set it up before I started classes. I had to not only pick my classes and my bedspread, but I also had to pick an agency to get my PCAs through (and my parents had to pick a fight with insurance to get my care covered). We didn’t really have anyone to talk to about the right way to do this, and so we ended up not meeting my new PCAs until my move in day on campus.

WOW, was that a mistake. It’s hard to overstate how much of a mistake that was! As soon as reality set in, I was terrified and could not stop crying. I hadn’t cried at all about going away to college until then, but the tears started to crash over me like a tidal wave and they just kept coming. I had absolutely no idea what I was supposed to do. How was I supposed to train people to help me do all of these really private, personal tasks? I felt so overwhelmingly out of my depth.

Luckily, my mom realized how I was feeling (I mean – the tsunami of tears was kind of a dead giveaway) and took pity on me. She came to and from campus every time I had a new PCA shift for the first week or so, and worked with me to show them how I needed things to be done. It was such an incredible help and relief – I don’t know what I would have done otherwise. Slowly and surely, I got more and more comfortable with directing my own care.

That doesn’t mean that there were no more ups and downs; no more bumps in the road. I was really lucky to have my parents only 30 minutes away when something went wrong. Because unsurprisingly, things went wrong. It’s really, really hard to find consistent PCAs (they are overworked and underpaid). And it’s even harder to find a PCA to cover a shift when the PCA who is scheduled has to unexpectedly cancel (they’re sick, their bus didn’t come, their babysitter cancelled last minute, etc.). So some nights, I’d have to call my mom after 11 pm because my PCA wasn’t there, they couldn’t find a sub, and there was no one to help me go to the bathroom and get in and out of bed. My mom would grab the necessities and spend the night with me in the dorm – those are the nights that I was especially grateful to be close to home.

And honestly, there are still moments when things are uncomfortable! Personal care really and truly is incredibly personal and intimate in ways you can’t possibly imagine until you experience it. But I’m so, so glad that I was able to have that opportunity. I cannot imagine my college experience without living on campus – I grew SO much during that time. And having others assist with my personal care was a huge part of that growth experience. I’m so grateful that I was able to have that.

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