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Why I'm Different From My Friends as a Teen Wheeling Through the Pandemic

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Less than a year ago, my friends and I sat on the wooden bench outside South’s library discussing our feelings about starting a new school year. We couldn’t wait to turn 17 and experience the magic of being the “dancing queen,” but we dreaded taking the SAT, subject tests and APs. None of us expected junior year, the so-called “worst year of high school,” to be easy, but never in my life did I expect that in just months, I would be quarantined, fearing for the lives of myself and my community.

While in most ways, I am your typical 11th grader, I was born with Charcot-Marie-Tooth, a form of muscular dystrophy. Charcot-Marie-Tooth is a degenerative nerve disease that causes muscles in my arms and legs to atrophy over time and weakens my lungs. I wear leg braces, use a wheelchair to get around and have an aide at school who helps me get on and off the bus.

For the most part, despite having a few more limitations, my daily life is just like that of my classmates — I obsess over the same teen movies, love hearing the latest gossip about who dated whom and dream of being accepted into a top-tier college in a big city. I am usually adamant that I am just like everyone else.

In late February, though, when the coronavirus started to reach the United States, I heard many of my friends saying, “we’ll be fine, this only affects old and at-risk people.” That’s when I realized that right now, I am different. Unlike everyone else, I will not “be fine” because I am one of those at-risk. My disability puts me at higher risk of having a severe case of COVID-19.

For most people, the flu is a small setback. They may have a fever, body aches and a cough, but with rest, Tylenol and a few cough drops, they’re back on their feet in a week. When I had the flu back in January, I woke up one night unable to breathe; I ended up in the hospital on a ventilator for nearly a week, and it took three weeks before my life regained a sense of normalcy.

When my friends nodded understandingly and told me that “they knew how terrible the flu was, too,” I knew that they didn’t experience it to the severity that I did. While the coronavirus might feel like a worse version of the flu for healthy people, whether or not we contract the virus can be a matter of life or death for me and many others with disabilities.

My family and I have been self-quarantining since the beginning of March. Since then, I have made it a priority to follow how the pandemic is affecting the disability community — and what I’ve found is not pretty. Just as my friends’ words about how who will be impacted perpetuate the idea that older and at-risk people are anomalies or have less worth, the same idea is spreading in terms of medical care. A shortage of hospital beds and medical supplies is sweeping the globe right now, causing many doctors to consider rationing care. Unsurprisingly, vulnerable populations are devalued for the preference of saving healthy, young, able-bodied individuals.

For example, Alabama’s emergency preparedness plan specifies that people with “severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” Policies similar to Alabama’s are being passed in other states, too, most notably Tennessee and Washington. It is understandable for medical professionals to consider the preexisting conditions that might impact a person’s chances of survival, but to deny people with disabilities — physical or intellectual — medical care based solely on how much they can contribute to society is eugenics.

Eugenics, although commonly connected with World War II, is still deeply embedded in society. Were I to contract the coronavirus, I might not even get admitted, and if I were admitted, I might be deemed less worthy of care due to my medical history. Alice Wong, a disability activist and ventilator user says in Vox, “[a doctor] might even take my ventilator for other patients who have a better shot at survival.” The situation Alice is envisioning is like taking lungs from someone disabled who is still alive and conscious to give to someone else, just because they have a disability.

Situations like these are not inevitable. When the government and medical professionals include the disability community in making choices about who to save and what policies to make, they can be prevented. I deserve to live just like any other 17-year-old.

I also deserve the same accommodations now given to able-bodied people after the pandemic is over. Social distancing has forced jobs and schools to allow people to work from home or to learn online — accommodations that have been requested by people with disabilities for decades. Whether it be because of chronic pain or fatigue or visual difficulties, many people with disabilities require working remotely in order to work at all. Time and time again, these requests have been denied, but companies that generally do not consider it an option now offer it willingly. Unlike the rest of society, the concerns the coronavirus brings for us will not fade when the pandemic is over.

Just like the average teen, I scroll through Instagram, liking memes about the dullness of quarantine and online school. But when I join the weekly Zoom meeting for the Boston disability community, I hear the desperation in people’s voices and realize that my community is one of the most at-risk in a time of pervasive fear. As a teenager who still dreams of a future just like anyone else’s, I can only entreat you to stay at home, listen to CDC guidelines and stay educated on how the virus affects the disability community and other marginalized groups struggling at the moment.

Maybe after reading this, you will send a text to your disabled or immunocompromised friend checking up on them and reminding them that you care. The pandemic may have all of us feeling powerless, but the one form of power we do have is how we treat each other. We can not prioritize the well-being of certain demographics over others, and we can not ignore the disproportionate impacts the coronavirus is having on the disabled community.

For more on the coronavirus, check out the following stories from our community:

Originally published: May 26, 2020
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