“Being disabled, for many of us, means the end to any hopes of pursuing an education”, said Ashley Cowan D’Ambrosio, a Master of Arts student at the City University of New York with multiple disabilities, including attention deficit hyperactivity disorder (adhd). “The system is thoroughly broken,” she said, “such that our dropout rates are some of the highest of any marginalized community, and our educational attainment rates are similarly problematic”. On this International Day of Persons with Disabilities, we describe the reality of ten American college students, who like Ashley, face multiple layers of barriers to access a quality, inclusive education.

Knowledge matters: understanding disabilities, and being aware of rights

The first barrier they describe arises from a lack of knowledge or empathy about disabilities among the teaching staff at college – something the 2020 GEM Report on inclusion and education will cover in depth. According to Ashley “The major issue I see […] is that our legal frameworks are built around the medical model of disability, which views disability as deficit and places an undue burden on the individual. […] It’s not just that we are having trouble ensuring our rights are met legally, it’s that we have to move beyond legal compliance to ensure inclusion.”

Ariana, a third-year student now in law school with a gastro vascular disorder remembers that, on missing class during her undergraduate studies, she “almost always was faced with disparaging remarks from professors and TAs regarding [her] not really being disabled or an attendance accommodation being inappropriate”. She adds that in college, she was told quite often that “she didn’t LOOK disabled, […] as if that were some sort of compliment.”

Mary, a visually impaired student, reports similar barriers: “I tried to obtain my math requirements, but this was hard because of the wide-held belief that blind people can’t do math because it is visual.” This sense of disempowerment has direct impacts on educational outcomes: “My grades became a direct reflection of course accessibility, oscillating from academic probation to the Dean’s List”, added Ashley.

The importance of awareness is true for the students themselves too, who often don’t know of their rights: “My first semesters of college were rough because I didn’t know what my rights and responsibilities were”, Mary continued. She reminded us that American colleges must provide accommodations under rights laws. This can include support such as the use of note-takers for class lectures, providing audio recordings of lectures or allowing the use of a laptop in the classroom. Hayley, a Master’s student in landscape architecture who suffers from severe mental illness and fibromyalgia, is adamant: “The longer that you are in school, the less accommodating people are”.

Inclusion in education requires inclusive financing

Being able to attend higher education means nothing to students with disabilities if it is not accompanied by physical access and financial and learning support. Ashley believes that post-secondary institutions are fundamentally under-equipped to support students with attendance-impacting disabilities, and their “dropout rates reflect this”. Ariana’s Disability Services Office, for instance, was on the third floor of an old building, , which often had a broken elevator. She advocated and worked with university administration for two years before that office was eventually moved to the first-floor.

The lack of resources is sometimes due to the fact that there have not been similar cases and requests in the past. Mary notes: “There was little support for me when it came to tables and charts for statistics, because my professor and the disability services office had never had a blind person in this level of math before”.

And at the most extreme end of the wedge, the challenge of paying for health care in the United States is enough to impact education access for some. Philip, for instance, who has Asperger syndrome told us he has experienced “the urge to drop out of school, partially due to the classic financial reasons”, linked to his health condition. Anna, likewise, who requires the use of a motorized wheelchair and the assistance of a personal care aid, has repeatedly experienced cuts and threats to these vital supports, claiming, in relation to the way this has impacted on her college career, that “the American healthcare system has just, quite literally, ruined my future”.

Empathy and support: the importance of friendships

“Hardly a week goes by without thinking of dropping out. Having Asperger’s, the first thing to note is that I have a very black-and-white way of thinking. I’ve found myself regularly penning emails to the registrar’s office asking for me to drop out.” Philip told us. He experiences isolation to the point of psychological distress: “It’s hard for me to maintain friendships and social circles.” Beekah a student with autism spectrum disorder level 1, admits the same worries: “I didn’t fit in well socially. With few people present in my life suddenly it becomes all too easier to lash out to the extremes of dropping out, or worse”.

Inclusion in education does not come from the top-down, but must involve a supportive environment and community. Mary backs this up when she tells us that sometimes all it takes to do well is “someone to believe in [us]”. Anna also referred to the importance of having her family backing her all the way: “I managed to succeed in high school due in no small part to the fact that […] [my parents] always ensured that I would not be pushed out of my advanced classes merely because of my disabilities”.

Through the National Center for College Students with a Disability  network, we heard from multiple students keen to highlight the challenges they face and their coping mechanisms for making it to graduation. This blog covers ten different students, with almost as many different disabilities, but they share several commonalities. They never let go of their dreams of education and they are advocates for others with similar struggles to them. Michelle hosts a podcast The Awareness Show about different rare diseases and their causes. Qusay, a psychology undergrad survivor of a suicide bombing in Iraq, who also sent us his story, gives motivational talks all over the world. Anna is working with legislators on new policies for people with disabilities in New Jersey. Beekah, meanwhile, is currently at Kansas State University helping students with disabilities on college campuses to “ensure they feel less alone than I did”.

But it is not right that, as Ashley puts it “the responsibility falls on the disabled student to self advocate, and persevere.” Achieving inclusion requires everyone to play a part. We all have an obligation to learn about the education barriers being faced by people with disabilities and to dismantle them.

Follow us as we continue to explore the challenges of achieving inclusion in education in the run up to the launch of the 2020 GEM Report next April. Sign up to receive the report when it is released.