In summer 2012, my life changed. I was a 20-year-old college student with a bright future. I was fearless and ready to take the world by storm. All of my hopes and dreams came crashing down when I began experiencing what felt like a black curtain within my field of vision in my right eye.
I went to my eye doctor and learned I was suffering from a retinal detachment that required surgery. According to my doctors, there was a considerable chance I could go blind if it was left untreated. With no other option, I had my first retinal detachment surgery. About two years later, I had a second retinal detachment and needed another surgery, which eventually resulted in significant vision loss in my right eye. I was devastated.
After my second surgery, I took a semester off from school to recover and to adjust to my new normal. My daily life had changed in so many ways. I could no longer drive so my mom or dad needed to get me to school. I was self-conscious because I needed to wear sunglasses everywhere because I was so sensitive to light. I had lost equilibrium, causing me to feel off balance and drop things frequently. And worst of all, I developed immense anxiety about losing my vision. It got so bad that I was afraid to leave my house, which had become my safe haven.
When I returned to college, I had to adapt to these changes among others. One of the toughest parts was that I could no longer look at a computer screen for long periods of time, which was a key element of so many of my classes. When I explained this to one of my professors, his response was, “Well, you better get used to it, because that’s what college is — looking at screens.” I ended up dropping that class.
I also started having social challenges. My friends, acquaintances and even some professors treated me differently. I felt judged and like I had to prove to everyone that I was still the same person. I knew my school could provide accommodations, such as an aid to take notes for me and record my responses for exams and counseling services, but I worried that if I accepted this support, I’d be considered weak by my peers and professors.
I continued moving through my classes without accommodations and while I struggled at times, I was able to complete my degree. After I graduated, fueled by my personal experience as a student, I decided to pursue a career in education. Today, I’m a doctoral candidate in the education leadership program at Rowan University, with a focus on students with disabilities.
In a recent policy inquiry course, I conducted an analysis of the Americans with Disabilities Act (ADA) — a groundbreaking federal law, first passed in 1990, which bans discrimination on the basis of disability — to analyze the issues associated with the self-identification process, particularly in the higher education space.
After engaging in a policy review and coding a set of policy documents from disability service offices at colleges and universities across the U.S., it became clear to me that I wasn’t alone in my reluctance to seek accommodations at my college. It turns out that many higher education students with disabilities are hesitant to self-identify and pursue accommodations that could support them in their studies.
According to the most recent data published by the National Center for Education Statistics, about 20 percent of undergraduate students and nearly 11 percent of graduate students have a disability. There’s a discrepancy though, between the rate of students reporting having a disability, and those who are actually registering with their campus disability center. It turns out many students don’t inform their colleges of their disability and that has led to a support gap.The truth is, too many college and university students with disabilities decide to forgo a request for the accommodations that they may need to be successful.
So, why aren’t these students seeking the accommodations that they need? The most common reason is stigma.
Disability stigma is a persistent problem on college campuses, which can lead to discrimination, a hostile learning environment and psychological stress. Research shows that students who have a disability — whether visible or invisible — are often belittled by other individuals, considered a challenge to understand and often experience pity and avoidance. In some cases, experiencing stigma for a long period of time can result in decreased self-esteem, depression and suicidal ideation.
Paving a Path for Change
Currently, under the ADA, students must first self-identify to receive the resources that they need. That’s where so many college students are getting hung up.
To better understand the critical issue of why so many higher ed students aren’t self-identifying, I dug deeper into the research, investigating the self-identification process and how different institutions approach it.
For a student at a higher ed institution, this process includes registering with campus disability services offices and supplying documentation as evidence of their disability. After my surgeries, when I was diagnosed with a vision impairment, the last thing that I wanted to do was ask for help, and obtain paperwork to prove that I had a disability.
If students do not advocate for themselves, they will not be granted access to the resources they need. Colleges and universities need to change their tactics for supporting students with disabilities who are hesitant to self-identify. They need to work actively to address disability stigma, train faculty to support students and offer multiple pathways for students to ask for support. It is vital that we move beyond compliance with ADA toward a more enlightened and comprehensive team-based solution to support students hesitant to self-identify.
While there’s so much work to be done, there is a body of research providing possible solutions to address this issue, offering higher ed institutions a glimpse into steps they can take to improve the learning experience for students with disabilities.
One study, for example, reveals the importance of campus collaborations and outreach efforts to share information with faculty and staff about how to effectively serve students with disabilities who haven’t disclosed their needs. Promoting academic success starts with college and university disability services offices; however, this effort requires different departments to come together to raise awareness.
Colleges and universities can also prioritize the promotion of disability services to all students and offer clarity around the process for getting support. Additionally, they can help incoming students feel more comfortable disclosing their disability by beginning the information sharing process prior to matriculation. One way to do that is to include disability resource centers and officers into the admissions process, inviting them to distribute materials about self-identification and procedures associated with requesting accommodations. That can go a long way toward raising students’ consciousness and destigmatizing the need for additional resources.
All students have the right to succeed. But until colleges and universities address disability stigma, not all students will have access to the support they need to do so.
