When I entered college as a freshman at the University of Iowa, I had mostly relied on the help of my parents all of my life. I had a one-on-one helper up through high school, and I had helpers come sometimes at night to give my mom a break from showering me, but I had never had as many helpers as I would be having in college. I require nearly around the clock care, and so I found myself suddenly moving two hours away from my home, living in a dorm room, and putting my life into the hands of about 11 helpers that I had hired that summer.
I imagine that most college students have some form of wake up call to reality their freshman year, and while I don’t mean to generalize, it is likely about how little high school prepared them for college classes. For me, however, this wake up call came in the form of certain helpers taking advantage of me in one way or another. My parents had always instilled in me that I deserved the same rights as everyone else, and had raised me to be a fighter and self-advocator. Still, because I was in a position I had never been in before, and because I was a brand new college student trying to figure out my life, it took me awhile to recognize what was going on. It took me awhile to wake up.
One of the hardest things I had to face after coming to this realization was how little people were prepared to help me. The agency I was using to hire my helpers had no suggestions or solutions. I had never come in contact with any sort of literature on hiring or managing personal care assistants, and so I had no idea how to handle this situation. Considering how common it is for people with disabilities to need personal care assistants, I still find the lack of discussion about it absurd.
I’m about to graduate from the University of Iowa with a degree in English and Journalism. Over the past four years, I have learned how to effectively manage my helpers and advocate for myself. I am without a doubt a much stronger person than I was when I entered the university four years ago. However, it’s not an understatement that my family and I have had to fight tooth and nail for the services I receive that have allowed me to be a successful student.
My time at the University of Iowa has been incredibly valuable. I believe that everybody, including people with disabilities, have the right to participate in and contribute to society. While college is not necessary to do this, it definitely has helped me to grow as a human being, let alone prepare me for my goals in life. Still, it is worth noting that the unemployment rate for people with disabilities is nearly twice the amount of able-bodied people, and that the shear number of hurdles for people with disabilities to jump through to succeed in college is astronomical. Of course, it does not have to be this way. Individuals and organizations devoted to supporting people with disabilities, especially students with disabilities, can do a lot in this way.
The following tips are based off of my own experiences and what I have gathered from talking to many other people with disabilities similar to mine. It is in no way representative of the experience of every person with a disability.
- Do your best as an individual or organization to offer as much support as possible for students with disabilities. Obviously, funding is not a never-ending resource, but recognize that there are many ways students with disabilities can be supported without extra funding for you or your organization. Offer pamphlets and other contacts to students who may come in with questions that your organization doesn’t cover.
- Become very well versed in all of the resources available to students with disabilities, whether this be through the state, county, or Medicaid. Even if your organization doesn’t focus on or cover funding for personal care assistants for students with disabilities (for example), know what the possibilities are for students who may have questions about this.
- If there are multiple organizations or resources for students with disabilities at your campus, reach out to them to work together. For students with disabilities, having so many disjointed resources on campus can feel overwhelming. Try to establish one central hub or website that students can go to where they can access all of these resources or organizations.
- Understand that while college is overwhelming for every incoming student, it can be especially stressful and difficult for students with disabilities. This is because there are so many other issues for students with disabilities to juggle, on top of classes, meeting new people, and living away from home. Instead of waiting for students with disabilities to come to you, do your absolute best to reach out to them. While it is necessary to instill self-advocacy in students, this can be difficult for students who have never had to advocate for themselves before. Consider checking up on students with disabilities on a regular basis to make sure they are accessing all the resources they need.
- Realize that one of the best resources for students with disabilities is other students with disabilities. People with disabilities are different from other minority groups in that they often do not have a community of other people like them growing up. Consider starting a group for students with disabilities to get to know one another and share their experiences and advice. If an in person group is too difficult, consider organizing a regular online hangout through Zoom, Skype, or Facebook. Also understand, however, that having a disability does not automatically make people similar. Think about organizing groups for students that have similar disabilities. It wouldn’t be as beneficial, for example, to have a group of students with mobility issues and students with learning disabilities.
This piece will be featured in Illinois/Iowa (ILLOWA) Association on Higher Education and Disability (AHEAD) newsletter.