In June of 2018, I was a high school graduate hoping to attend a state college. I began attending college that fall. Unfortunately, I went through three PCAs (personal care attendants) in my first three semesters of college. It was hard because my first PCA was constantly running late. This always made me nervous because I didn’t want to miss classes. This PCA sometimes also made me feel like a burden. It’s not a good feeling when your PCA makes you feel bad just for existing in your disabled body. The subsequent PCA worked well until I let her go due to personal issues. The third PCA had unreliable transportation. It wasn’t until 2018 that I discovered just how difficult it could be to find good PCAs.
I also didn’t realize how much disabled adults have to fight for services. In March of last year, my new power wheelchair was finally delivered after waiting over a year. I had to appeal my new chair twice. Insurance said I didn’t need a new one. Thankfully, with more proof from my team at Boston Children’s Hospital, insurance approved the power chair. However, they denied the seat elevation function. Because of the kindness of my community through a GoFundMe page, I was able to have iLevel on my chair. I know that it is an immense privilege to ask your community for donations. This isn’t something disabled people should do; resort to fundraising for medical expenses. I feel that insurance should cover all healthcare costs.
I’ve also found that accommodations for a disability are harder to obtain in the adult world. At Westfield State University, for example, you have to renew your accommodations every single semester. My need for accommodations is not going to change between semesters. Requesting e-texts and other accommodations can take weeks, but when your advisor doesn’t respond to emails, these go unfulfilled. Just recently, I discovered that I was never registered for my full course load for this spring because they never registered me. I fear that this may mean that my accommodations are delayed.
It doesn’t seem to be any different when you request accommodations in the workplace. When I’ve applied for jobs and mentioned that I need help with my personal care, people deny my request for this accommodation. This is despite the fact that having a PCA is vital for my success in the workplace. Without a PCA, I would not have a way to use the bathroom or get to work. Sometimes, people don’t even respond to my inquiries about employment once I disclose my disability. With the right supports, disabled people can be valuable employees. Needing help to do a job doesn’t mean somebody can’t work.
Throughout childhood, I was told that I could overcome my CP and that I could do anything. People need to realize that disabled children grow up into adults who still need supports and services. Disabled adults deserve to live productive, meaningful lives. Productivity can look different for all disabled adults, and that is fine. If one disabled person is a lawyer while another works in a grocery store or is a volunteer, it doesn’t mean that their lives aren’t worth the same amount of dignity and respect. We might need help, but that’s okay.