As in many other areas of life, the experience of the pandemic brought about several positive changes in the accessibility of higher education, the residual effects of which can still be seen today.
For example, it is unarguably the case that modifications to learning such as attending lectures remotely, flexible assignment deadlines and the captioning of audio-visual materials are likely to benefit all students, not just those with disabilities.
However, for a certain contingent of students, namely those living with significant mobility or dexterity challenges – accessing the most appropriate academic accommodations represents the mere tip of the iceberg when it comes to experiencing equitable access to campus life. According to 2022 statistics from the American College Health Association based on a sample size of 54,000, such students comprise only 1% of students with disabilities. This may go some of the way to explaining why the unique challenges of these young people in higher education are all too often sidelined and misunderstood in contrast to more common disabilities impacting college students such as dyslexia and ADHD.
Living with uncertainty
In order to comprehend the multi-layered hidden barriers encountered by these students, erstwhile college alumni need only spend a brief moment reflecting back on how they may have passed that golden summer between the end of high school and the first semester at college. Undoubtedly, many would have spent the time bidding a fun and fond farewell to old friends as one of life’s chapters drew to a close and a new and exciting one began. Perhaps, the more studious might have undertaken some light browsing of course materials.
Imagine instead, as would be the case for a student with a complex musculoskeletal condition or spinal cord injury, spending that summer in a desperate race against time to understand the nuances of becoming a full-time employer of a personal care assistant for the first time, getting to grips with the appropriate Medicaid allowances around this and ensuring that your personal assistant is in place by your first day on campus or risk everything you have been working toward your entire life falling apart before it has even begun.
Back in the summer of 2021, this was the precise position Eleanor Bolton, today a junior majoring in political science and economics at the University of North Carolina (Chapel Hill) found herself in. Bolton, who lives with spinal muscular atrophy is a full-time wheelchair user and relies on personal assistants to meet her daily care needs.
Despite growing up with these challenges, Bolton earned a prestigious merit-based Morehead-Cain scholarship to study at her chosen academic institution. However, as a young woman fresh out of high school, she was entirely unprepared for the complexities of navigating the onerous administrative infrastructure involved in obtaining funding for and sourcing her own personal assistants so she could live away from home.
“I had to spend a ton of hours that summer finding an insurance program to facilitate the costs of my care. That was really tough,” says Bolton.
“I was 18 years old and trying to go through thousands of pages of Medicaid bylaws. All summer I kept being told that the insurance wasn’t going to cover this or that or that it may be impossible for me to attend college independently. It was incredibly disheartening because I’d worked so hard in high school to go to college and I did not anticipate it being so difficult to make that transition.”
To a certain extent, Bolton, who was eventually able to access a care package to meet her needs, was able to take these administrative burdens on the chin. After all, self-advocacy in dealing with complex bureaucracy is a life skill that most adults with a disability will need to learn sooner rather than later.
However, in February of this year, she was to receive another untimely and upsetting introduction to the world of disability rights when the elevator between her third-floor dorm room and the ground floor broke down leaving her and another wheelchair-using student on the floor above stranded whilst a repair was not actioned for several days with no backup plans in place either.
She was only able to survive through the kindness of friends bringing her snacks and eventually her father was forced to make the three-hour drive to UNC, carry his daughter down the stairs and take her home whilst they waited for the elevator to be repaired.
The episode was to provide a lightning rod for direct action student protests on the general state of accessibility on the UNC campus and, for Bolton, it was a true eye-opener.
“It was a super frustrating moment for me and a realization that disabled students are just not prioritized and made part of the conversations that need to be happening on college campuses and in higher education,” Bolton says.
“Before, I used to think that I would always just be able to assimilate and take on the burdens of navigating a world that was not built with me in mind. However, after that moment, I decided I couldn’t be passive anymore and just allow those people coming up behind me to live with these types of inhumane conditions.”
Growing pains
Following a difficult first few months as a freshman, Bolton was eventually able to get both her personal care needs and academic accommodations organized with the help of Accessible College – a consultancy specializing in providing college transition support services for students with physical disabilities. Her introduction to Accessible College came through the Christopher and Dana Reeve Foundation’s National Paralysis Center which runs part of its college transition program by offering prospective students introductory sessions with Accessible College.
Accessible College’s founder and Director Annie Tulkin explains that the sudden pivot from high school to college, the former being an environment where parents can often advocate for their kids with disabilities, can feel like a jarring experience for students.
“Parents don’t often realize that, once the student matriculates to college, their role is very much diminished,” says Tulkin.
“Under the Family Educational Rights and Privacy Act, here in the States, once a student commits to a college and signs on the dotted line all of the correspondence goes to the student even if it’s the parent paying the tuition bill. The expectation is that the student is making all of the requests, the student is talking to their professors, the student is connecting with the college’s Disability Support Office. So, that’s a big shift.”
Naturally, there is great variance in self-advocacy and communication skills amongst individual students but an additional complicating factor is that competence levels, experience of different types of disability, budgets and policies are not uniform across college disability offices either.
“What is seen as a reasonable accommodation under the Americans with Disabilities Act varies from place to place in the college setting. Students may be expecting a certain type of accommodation or for something to be done in a certain way because that may be what they’re used to in high school but since the laws are different in college in the States, they might not receive the same level of care or support that they’ve had previously,” Tulkin explains.
Clearly, many of these complex issues could be vastly improved through increased targeted investment — be that directly through the college disability offices, high school transition services or creating more robust generic protocols for academic accommodations to save individual students having to explain and negotiate so much with their professors.
Nonetheless, perhaps the most important thing parents of kids with disabilities can do is to start teaching skills of independent living such as orientation and mobility, accessing public transport and managing medical appointments as early as possible in life. That way, the self-advocacy required for disabled students to start college can feel like more of a natural continuation, albeit with a steep learning curve, rather than a cliff edge for students with disabilities entering higher education.
As for Bolton, she has the following words of advice for students with severe mobility impairments who are about to follow her path in choosing their college this October:
“Higher education in general may not be set up with us in mind but we do belong in these spaces,” she insists.
“Continue to advocate for yourself and look out for those resources that are out there that you might not yet even know you need as a young person with a disability. Never give up and don’t underestimate yourself because you’ve probably already overcome and lived through so much. You deserve to have a great experience in college and we could certainly use you here with us on campus!”
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