Why advocating for accessibility accommodations in school is crucial

During my senior year of high school, mornings were always stressful. I attended a massive school of about 3,000 students. My driving partner and I lived on the edge of our district, so arriving on time was a constant struggle.

In an attempt to be in class by 8 a.m., we had to fight traffic getting into the parking lot. Once we were parked, we had to hike across asphalt with heavy backpacks, often through the cold and the snow of a Minnesota winter. These factors were all major enemies to me because I was living with severe pulmonary hypertension (PH).

My first-period Spanish class was on the second floor. Depending on our timing on any given morning, some days I didn’t have time to rest before making my way across the commons and upstairs to the class. My health was declining significantly that year, prompting my healthcare team to discuss the possibility of a heart and lung transplant. It was probably the first year I felt that my daily life was becoming unmanageable.

Recommended Reading

March 7, 2022 News by Vanda Pinto, PhD

Depression and Anxiety ‘Alarmingly’ High in PH Patients, Study Finds

I’ve been thinking about this version of my former self a lot lately. In hindsight, I kept so quiet about my needs and the changes that were taking place with my health, even with my closest friends. Sitting here now, I can still picture the expansive layout of that school, and the dread I felt about navigating it. It was simply unmanageable. Still, I don’t think I ever told anyone something so simple as “I need to slow down.”

The school did have a brand-new elevator, but it was highly visible to the open floor of the commons, and practically no one used it. I wish I’d been brave enough to use it, but even more than that, I wish the school community had made me feel comfortable enough to do so.

I also should’ve sought some allowance from school administrators to have extra time between classes. Considering the ground I had to cover, this would’ve been a big relief and a reasonable accommodation.

I do remember one accommodation I took advantage of that helped a lot. Instead of carrying my textbooks, I requested the school to provide me with two copies of each of them, which allowed me to leave one at home and one in the classroom.

The next year, attending college forced me to fully assess my needs. I’m proud to say that during my freshman year, I became much better at advocating for my needs. This included a car on campus and access to all university elevators, which I took full advantage of.

Navigating any school, especially a large one, while living with a chronic illness like PH is extremely challenging. At that time of my life, my illness was mostly invisible, meaning that the choice about whether to explain my experiences and limitations was up to me. Because of social pressures and denial, I neglected to sufficiently address the difficulties I endured. Ultimately, this prevented me from requesting the accommodations I required and deserved.

A decade later, I like to think that accessibility is more openly discussed than it was before. Still, I believe it’s our responsibility to spread ideas and knowledge within the various disease communities about the hurdles we face. For any teenagers out there who are facing high school with PH, please don’t be afraid to be assertive and creative about finding solutions to anything standing in your way.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.