Wednesday, June 17, 2020

Being Disabled During the Pandemic

Living during the COVID pandemic has been a unique time for all of us - it's like nothing else that most of us have ever experienced, and it's kind of incredible how much our day-to-day life changed so quickly. But I'm going to get a little bit personal today, and talk about the pandemic beyond the science and statistics. I want to talk about what it's been like being disabled during the pandemic.
It became clear to me at the very beginning of it all that this was going to be a particularly challenging time for me, and for other people with disabilities, when I heard the language that was being used to talk about the severity of coronavirus. Over and over, I heard things like: "It's only dangerous for people with pre-existing conditions." "The only people that have died are those with pre-existing conditions." People didn't understand why life had to stop just to protect people who were vulnerable. As someone who does have a pre-existing condition, and for whom COVID could be incredibly serious if not deadly, it's hard to hear that people think like that, hard to hear that other people don't think my life is valuable and worth protecting. It seemed, right from the start, that it was going to be an uphill battle for people to take this seriously, for me and for the everyone else, too.

My family knew that we'd be staying home no matter what the city of the state decided. But while my parents are also my caregivers a lot of the time, my sister and I also have a paid caregiver that comes in part of the time. We had to really think about what to do in this situation - was it safe to have her keep coming? Was she taking precautions to stay safe and healthy? If we told her not to come, we knew life would be much more stressful for us. So we took a calculated risk and had her continue to come for her scheduled shifts. We'd also been in the process (for months, actually) of getting additional caregivers for the "shifts" that weren't currently filled. We had to put that on an indefinite pause, until we feel like it'll be safe for strangers to come into our house again, people with who we haven't built up that trust.

When you're truly staying at home, and not leaving even for necessities, there's the matter of actually getting the things that you do need. I know there were lots of jokes and memes about finding toilet paper, and paper towels, and hand sanitizer, and disinfecting wipes. But for most people, if you really needed one of those things, you could go to the store and within maybe a few days, you'd be able to pick up whatever you needed, because the stores were rationing how many each customer could have. Well, it didn't quite work that way with online ordering or delivery - even now, you can't order things like disinfecting wipes easily. Luckily, we had some kind friends and family who helped us get things when buying online/for delivery just wasn't possible - but not everyone has the support network that we do.

And now... people are bored. They're over the pandemic, they're over not being able to see their friends, to get a haircut, to go on vacation. They don't want to wear masks - they're uncomfortable, they restrict their breathing (even though, of course, doctors and nurses and all medical staff have been wearing masks for hours each and every day for the last few months). I wish the pandemic were over too! I want to hang out with my friends, go to a concert, go out to eat. But as a disabled person, people's disregard now towards COVID makes me more nervous than ever. It's clear that because people in general won't take simple precautions (obviously - not everyone, but many people), I have to stay vigilant, and stay home, away from friends and from the public. But for how long will I be able to do this? For how long will virtual options remain? When people talk about "opening up," they say that we need to continue to protect the most vulnerable - continue to protect me. But if people aren't willing to do something as simple as wear a mask to protect me, how can I believe that there's anything they will do?

So I urge you to keep me, and to keep other people with disabilities, on your mind in these next few months. Weigh your discomfort with wearing a mask and not being able to get a haircut with my continued inability to even leave the home. Make risk calculations, but really consider if the reward is worth the risk - not just the risk of being infected with coronavirus yourself, but with unwittingly adding to the spread and the concern of taxing the healthcare system.

One thing that I strongly believe is that living with a disability has taught me resilience and adaptability. I know that a pandemic is a stressful time for everyone. But I'm confident that as a society, we can adapt to a "new normal" if we try - we can make changes for now, knowing that it might not be our preference, but that we'll survive until the current threat has passed. And it will pass - but we all have to be willing to do our part now.

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