April 26th, 2022

Rachelle's Story

When I moved to start my Ph.D., the biggest concern on my mind should have been preparing to start up my classes and research. But instead, all I could think about was the anxiety I felt about requesting disability accommodations. I am dyslexic with ADHD, and while I know I have the potential to thrive in my Ph.D. program, I am aware of how much I depend on accommodations in order to make education accessible. Completing a degree without accommodations is not an option for me.

But I should have had nothing to worry about going into my accommodation meeting. I have an official diagnosis of both dyslexia and ADHD (both disabilities protected under the ADA) and I have been diagnosed and receiving accommodations for these disabilities since early elementary school. Also both are lifelong neurologically based disabilities that can not go away. I am dyslexic with ADHD, that is not changing.

However, my university, along with many universities across the country, requires a student to have a diagnosis within the last five years, even for disabilities like dyslexia that by definition do not go away. I knew people personally who had been denied disability accommodations due to having a diagnosis over 5 years old, I knew this could be possible for me.

Stricken with anxiety for months leading up to meeting with the disability services office, I went to request my accommodations. I had at this point already gone through this process before with the three post-secondary institutions that I attended previously. I knew what to expect in this meeting, including the type of documents they wanted and the type of questions they would ask me. However, this time it was different, the odds of me getting accommodations were less in my favor since my documentation was older than 5 years.

I knew I would have to prove that my dyslexia and ADHD had not gone away, that I really did need accommodations like my past diagnosis said. On my way to this meeting, I tightly gripped a 1.5 inch stack of documents containing detailed evidence of disability and accommodation history. Here’s a brief list of just a portion of my documentation: (1) my initial diagnoses evaluated outside of the schools, (2) multiple disability reevaluations by public K-12 school, (3) every version of my IEP throughout K-12 (with additional letters written by teachers of how my disabilities affected my learning, which accommodations I actually used in the classroom and how often, and how each accommodation was necessary), (4) the accommodations I was granted at three previous post secondary institutions (with records from the disability services office of how often I requested and used each accommodation), (5) the official accommodations I was granted on multiple standardized exams (i.e. AP exams, PSAT, ACT, and GRE), and much more beyond this. I don’t know any dyslexics with more documentation than I had (excluding a diagnosis from less than five years ago), but would it be enough? In addition to these documents, I had in my hands a prewritten printed speech I planned to say in the meeting to try and prove my case.

Going into this meeting I was so scared of being denied accommodations that I ended up having an anxiety attack in the lobby of the disability office. I thought, “what do I do if they deny my accommodations? I have worked so hard to get here and being a researcher is my dream, but without accommodations is this even possible for me? Would I have to drop out? How long would I make it before I would drop out?” I was spiraling. I know academia is not structured for disabled students like me. But without accommodations to level the playing field what did I think I was doing here?

After the meeting they ended up granting me accommodations, deciding my diagnosis from 6 years ago was good enough as it was in combination with my extensive additional documentation. But while I got my accommodations, I should not have had to go through that much anxiety to get them. It was an invalidating experience having to prove that my disability and need for accommodations had not disappeared. Also, many LD students who had K12 accommodations do not have the level of documentation I have, and they should not have to. We know that LDs are lifelong disabilities that do not go away with age. So why do universities require students to have reevaluations redone so frequently? This is unnecessary and costly to students. This results in at best my situation that was a highly anxiety inducing and invalidating experience and for others it results in not receiving accommodations for clearly diagnosed disabilities and possible drop out as a result.

Systemic barriers in disabled students’ access to higher education must be acknowledged and dismantled. We are urging the Department of Education to take steps towards equity in education access, by issuing guidance to postsecondary institutions that they accept IEPs and 504s as evidence enough for disability accommodations.


Rachelle Johnson is an NCLD Young Adult Leadership Council (YALC) member.

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