I spent a good part of my childhood embarrassed of who I was. I would check my blood sugar under the table and hide my pump sites, trying to dismiss the notion that I had diabetes. I was mortified by any sign that I wasn’t normal and I tried to hide it from everyone, even the people closest to me.
Eventually, as I got older I got too tired of hiding part of my identity from everyone around me. Pretending that I didn’t have this extra part of me. I started researching “invisible disabilities,” trying to understand how the thing that made me different from all of my friends was actually a blessing. I came to realize that having diabetes has actually helped make me who I am.
When COVID-19 hit, I instinctively had a feeling that it wouldn’t be good. Like many with disabilities, I had a sense of impending doom, which has since proven to be correct. I had thought I would spend the summer after my freshman year traveling around Europe with my friends, working a minimum-wage job to save up money, and spending as much time outside as possible.
Instead I have been fighting for the rights of teenagers with disabilities.
“It gave us the space to vent about school policies, treatment by the people closest to us, and how everyone is handling COVID-19. But it’s turned into so much more. ”
Months ago, I posted a letter on my social media illustrating my frustration upon seeing so many friends’ and strangers’ social media posts ignoring social distancing measures. This hurt, because all I was thinking about was isolating myself. I had about 40 other teenagers, most strangers, write to me, thanking me for my words and telling me how they had finally felt less alone. Due to the response, I decided to start a support group for immunocompromised college students to collectively support each other including many students from my chapter. It gave us the space to vent about school policies, treatment by the people closest to us, and how everyone is handling COVID-19. But it’s turned into so much more. We support each other. We understand each other.
Through this group, I, along with my friend Sam (who also has type 1 diabetes) started looking at the policies that universities in Virginia were putting into effect and how these policies impacted students with disabilities. We found that most policies were exclusionary and forced students to drop out of most of their previously planned classes if they were not able to return to campus in the fall. We shouldn’t have to change our graduation timelines or our carefully crafted class schedules just because we have a disability that makes it dangerous to return to campus in a pandemic.
Now, we have been gaining media attention to this cause. Last week, USA Today published a piece on the challenges that immunocompromised college students face, and we are now talking with other major media outlets. This has given us a bigger opportunity to have our concerns heard.
This pandemic, as terrible as it has been, has given me a voice and a community. It has opened my eyes to the issues that face the disability community and has given me a purpose. I have met people (virtually, of course) with all types of disabilities and who have stories both similar to and completely different from mine.
I know now that this is what I want to do for the rest of my life. I want to be a voice for those that are normally pushed aside to a small department in a university.
“I want to be a voice for those that are normally pushed aside to a small department in a university.
I also understand even more the power, and necessity, of youth voice.”
I also understand even more the power, and necessity, of youth voice. As individuals with diabetes, we have a perspective that makes us important and powerful in the community. We have experiences with the faults of the healthcare system and understand what it means to be on the outside of a system that is supposedly designed to help us. This is power in today’s society.
Activism starts with accepting who you are. I spent way too much of my youth trying to run from that. When I finally accepted that my disabilities help define who I am, I gained belonging. For the first time, people understood who I really was. Having multiple chronic illnesses is not all I am, but it has shaped how I look at the world and interact with the people around me.
The world is not built for people with disabilities. This pandemic has exposed parts of our society that we have already been aware of and those we haven’t, and in doing so, it has given us a gift. It has allowed us to come together with shared experiences of chronic illness. Able-bodied people now have a sense of what it means to be concerned about your health and well being every single day. Moving ahead, I look forward to working with others in channeling this new-found compassion into action and substantive change.
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