In the United States, we turn to the Americans with Disabilities Act and the Section 504 of the Rehabilitation Act for guidance on disability in education. Schools from K-12 and those of higher learning look at disability and their institutional responsibilities somewhat differently. In either case, disabled students who seek reasonable accommodations have many obstacles to overcome. But these issues are not unique to the US, as I learned from Angela when we talked about her experience as a disabled student in Spain.
ANGELA
When Angela was fourteen years old, she developed a butterfly rash on her face. No one made a big deal about it. When Angela was sixteen years old she began experiencing pain throughout her body, and a debilitating fatigue. Over the next couple of years her symptoms progressed. When she was eighteen years old, she spent most of her senior year of high school homebound and bedridden. She failed her classes and ended up repeating her senior year of high school.
Angela was diagnosed with ankylosing spondylitis. “Ankylosing spondylitis is an inflammatory disease that, over time, can cause some of the bones in the spine (vertebrae) to fuse. This fusing makes the spine less flexible and can result in a hunched posture. If ribs are affected, it can be difficult to breathe deeply.” – Mayoclinic.org
HER TEACHERS DIDN’T BELIEVE HER
In her senior year of high school, Angela’s teachers, who had known her for years, didn’t believe that she was suddenly sick – after all, there was no visible sign. They knew an Angela that was an active, athletic young woman; then she was tired all the time, and struggling with pain? They made the choice not to believe her. As a result, though Angela had become a disabled student, she wasn’t able to get accommodations to compensate for her disability. Not only was she missing school but she struggled with studying and testing. She ended up repeating the grade.
Of course, repeating the grade under the same conditions would only result in the same outcome. Something needed to change. That’s when one of her teachers with seniority decided to believe her. Together, they developed a plan that included more time to complete tests and waiving absences as long as she kept up with her assignments. She succeeded, passing her classes and graduated high school.
ENTERING UNIVERSITY
When Angela transitioned to University to study occupational therapy, she found the new environment more accommodating. Her professors understood that some students required accommodations for their disabilities, and unlike her K-12 teachers, they didn’t have a ‘healthy’ version of Angela to compare her with.
Even though she received accommodations with less resistance in University, it didn’t keep her condition from worsening. She was still missing a lot of time, and while teachers were more understanding, her own limitations caused her to fall behind. She ended up having to repeat her first semester at University due to illness.
RELATIONSHIP: AUTOIMMUNE DISEASE AND ADHD
One thing the higher education system in Spain seems to lack for disabled students is an accommodation for flexible deadlines. This turned out to be a particular challenge for Angela. Angela decided to get evaluated for learning-difficulties. She was unsure whether pain and fatigue alone were harming her performance. In November of 2021 she was diagnosed with ADHD.
Interestingly, a 2017 study in the Journal of the American Academy of Child and Adolescent Psychology found a relationship between autoimmune diseases like ankylosing spondylitis and ADHD. Angela is now seeking new accommodations based on her new diagnosis.
VALUE OF ADVOCATING FOR YOURSELF AS A DISABLED STUDENT
Knowing your challenges allows you to seek the accommodations that will make the most impact for you. If Angela just gave up looking for answers, she might never get her true needs met. As a disabled student, she’d never be able to enjoy the same quality experience in education that her peers could.
Angela is now pursuing new accommodations based on her new diagnosis. She’s ready to succeed.
I asked Angela what this whole process of seeking accommodation for disability had taught her.
- “Find a safe person to believe you or help you, like a teacher or guidance counselor – it is important to be believed.”
- “Follow and engage with disability rights advocates” – Angela has learned a lot about her rights as a disabled person by listening to thought leaders in that space.
- “Getting accommodations might be met with resistance, but it is for your own good, so don’t give up.”
Thank you Angela. Patients Rising hopes you get the accommodations you truly need.
Resources
- Discrimination Against Disabled Students in Higher Learning
- Angela on Instagram
- Health Advocacy Summit has indepth information on disability in higher learning
As the Director of Patient Outreach at Patients Rising, Jim works very closely with the people to help them tell their stories. Jim is a Columbia University trained writing consultant and has worked closely with writers of all levels of skill to help them find and refine their voices. He is a writer, editor, author and certified medical assistant with over 20 years of experience in healthcare. Jim has spent over two decades in clinical care and research at some of New York’s biggest health institutions doing hands-on patient care, education and advocacy for rare disease patients. He has worked with several non-profit patient support organizations doing outreach, advocacy and creating educational content. Twitter Linkedin