rocking and rolling

On this National Rare Disease Day (and almost 1 year stay-at-home-iversary), I present to you all my very first blog post. (cue applause) 😂

Growing up, I was conditioned to be sorry for being different. From having paras in my classes because I needed extra help, to feeling isolated in the corner of the gym doing physical therapy during PE class, to when my friends’ stopped inviting me on social outings because they weren’t accessible. The switch flipped inside of me when I finally started seeing disability as something that was normalized, not shameful. It was, however, unfortunate that this moment came when the world was telling me the exact opposite. This is the story of how I learned just how much society hates disability, while at the same time learning to love it myself .

There’s nothing like a global pandemic to let you know where people’s priorities really are. And I’ve had basically a year to feel angry, depressed and hopeless about it. But it has also brought on the more significant realizations I’ve had about my life so far.

It all started March 12th 2020. My last in person class before the city’s (and my own personal) stay-at-home-order. This was a group project class which we would have to finish through clunky work sessions on Zoom. We got very little done that day. Our conversation went from lamenting the cancellation of March Madness, to passing around someone’s Bath and Body Works hand sanitizer in solidarity. Realizing we were all talking through our impending doom, my professor tried to make sure we were prepared to continue online for a while. I remember her echoing what many people were saying at the time, telling our group, “you guys are young, you don’t need to worry about it, just wash your hands.” It’s just the older people who are dying from it, right? While this was the common way of thinking at the time, coming from someone who I’m sure meant well, I now have grown to hate this sentiment. And even more that I didn’t speak up and say something like, “well actually, I could die from it.” I was probably in denial, just like everyone seems to have been all this time.

I was born with what doctors now clinically describe as distal Spinal Muscular Atrophy, although genetic testing done at the time did not confirm an SMA diagnosis (gotta love a medical mystery). Whatever it is affects basically all muscles in my body, and led to several childhood battles with pneumonia from something as minor as a cold. And while I’ve come a long way since beginning my life on a ventilator, I can’t confidently say I would survive something as bad as COVID.

So the next day, it was announced we would be going virtual for the rest of the semester. I watched as the County Commission debated if the lives of people like me are worth losing profits (which would become a conflict central to the world’s excuse to hate disabled people). Then we finished the semester, which was different, but the newness of remote life was kind of exciting at first, I must admit. That faded fast. But virtual world is what led me to what would be the beginning of my disability acceptance journey.

Through social media, I found out that the team behind Crip Camp (a documentary about the disability rights movement I watched during the extended spring break) was hosting a virtual “camp” all summer. Every summer since I aged out at 17 I went to Muscular Dystrophy summer camp, and now as an adult I’ve been attending a retreat for those who age out every August. But since it was canceled this year, I needed something to do. So I signed up for Crip Camp: The Virtual Experience, a weekly series of conversations with disability advocates.

As it turned out, forming connections with disabled communities across the world was just the validation I needed. I started following disabled creators and making friends in social media groups too. And I found the representation that has never existed in the mainstream. I realized how much internalized ableism I was carrying from the world around me. That disability is not only your lack of ability, it’s the lack of accessibility in society. What I realized was all the stuff I thought I had to apologize for, is really what makes us who we are. My disabled lived experience has shaped me into who I am today. Sadly, this came just in time for a dominant portion of society to try to rip that progress away from me.

All this to say, it really hurts to know that a large part of the population doesn’t care if you die. But that’s what I’ve spent my time in isolation coming to terms with. The fact that people are constantly educated about the consequences of their actions, but aren’t willing to take simple actions to help slow the spread because it may not directly affect them, is what really gets to me. This even coming from people I considered friends. Don’t get me wrong, I am fortunate and thankful to live with my family and have the resources I need to survive the long haul. I’ve always known life was going to be hard as a disabled person in an ableist world. But having the collective disdain for us be thrown in my face with every Instagram post from a college party and Facebook conspiracy theory is a new level of disappointment. All that time I spent learning to love myself, clouded with reminders that maybe nobody else actually does. I wish there was more empathy in the world.

This past year has exposed the sad truths in this country. Those in power really only care about their own interests, and a large portion of the population really wouldn’t think twice about the lives of disabled people. Please take the consequences of your actions seriously, not only for me, but for the marginalized communities disproportionately affected by this tragic pandemic. And please get the vaccine.

poetry?

my experience being disabled in a pandemic

well that was embarrassing

hey 👋

the war on tiddies