I successfully registered with the disability services office at my university two years ago. This is what I wrote then about the experience.
I registered with disability services today.
It’s been a long journey. While I’ve fought heart problems since my late teens, I never registered with disability services. I didn’t think I needed to, and (for the most part) I was right. The last few years have brought on an entire slew of new medical problems, though, many of which are still being diagnosed. It was a trial of a new medicine that landed me in the ER in early September, and after that there was an endless succession of tests and appointments.
I’m in the last stages of my doctoral degree. I’m not sure what the future holds for me. But my present involved a part-time tutoring position. I’m good at that job. Too bad that job, one offered to students through my university, uses a point system in which all absences — even those for medical reasons with notes and hospital bracelets — means losing points. There’s a limit of 3-4 absences from August to December before a student worker is summarily fired. By my second absence, my hours were docked and another tutor was hired. The overall attitude was one of “well, we know this isn’t your fault, buddy, and it’s just a real unfortunate situation, but we can’t have this.” I’m usually one of about 4 people staffing a writing center in the library. Compared to the fast-paced world of the hospitals where I was spending much of my time, where it really is life-or-death, it seemed like a gross overreaction. That might explain why I sort of lost it — not in the sense that I stormed into my supervisor’s office and barfed on his boots. No. I just called up the ombuds, and from there the HR department and the head of the organization over my organization. There’s no formal protection for student workers — no sick days, FMLA, or time off — nothing except what might be afforded by the United States’ ADA and the university’s own guidelines for students with disabilities. So, probably with substantial pressure from several annoyed powers-that-be, a path forward was slowly hammered out.
That path involved me formally filing for ADA accommodations and disability support services as a student. There was a lot of very complicated and confusing paperwork, and several more doctor’s appointments. There were many phone calls and emails that resulted in conflicting information. I lost a lot of time I could have spent on my dissertation. And I was an emotional mess. It wasn’t just all the frustration of the process. I was terrified of finally being formally labeled as “disabled.” I was worried, paradoxically, that I wouldn’t get these accommodations — not just that it would mean that I would probably lose my job, but that once again it would mean a bunch of health care providers and people who did not live in my skin had decided not to take me seriously. I have a so-called “invisible” illness, and having people (like my boss) simply assume that nothing is wrong because nothing looks wrong is usually an everyday occurrence. (It’s only “usually” because there are those days where no one sees me at all because I’m just too ill.).
In the end, I did win disability accommodations. I had to do this both as an employee and as a student. I had to struggle to find some sort of “accommodation” that the university could grant me as a PhD student, because without a need for an “accommodation” I couldn’t be simply registered as a student with disabilities.
I had no guidance on what those accommodations might be. There were a few hints up on the university boards, but those were all aimed at undergraduates. I didn’t need extra time on tests, because I wasn’t taking any more timed exams. I didn’t need lecture notes, because I wasn’t attending a lecture. I had no mentor in the university that could help me, and none of my doctors – despite being informed of my struggle – offered any suggestions or referred me to occupational therapy or the like.
Thankfully, there was something they could do. I needed to study at one of the libraries, and the only path up was via stairs. I could no longer manage the stairs, so I wasn’t getting to use the library … the only library that had material related to my PhD. This was a significant barrier. There was an elevator, but it was for staff only. I wrote down everything that I thought I needed for work, threw on the access to the library, and asked if that would do to get me registered as a disabled student. It would. Thank goodness, and several months later, I did get access to the library as well.
I didn’t get my hours back that year, but I wasn’t fired. I’ve never received a raise, although it’s my third year working and my evaluations have always been stellar. My boss eventually apologized for the confusion (because docking someone’s hours and nearly firing them is “confusion”) — but the next year, when I was back, he asked how to use an epi-pen. I no longer feel as though I’m constantly being examined for any potential weakness for grounds for termination. I still love my job.
There were so many things wrong with my introduction into the world of formally being “disabled.” Thankfully, with information from the internet, support, and understanding doctors, there was a lot that went right as well.