When you grow up in a world that doesn’t feel like it’s built for you, you’re going to inherently feel a certain way about things. People may not understand it. They may say you’re overreacting or being too dramatic, but this is our reality.
I love to travel but everywhere I’ve gone, there’s been some kind of obstacle because most places aren’t set up for people with disabilities, including places here in the US. I’ve also had to accept that no matter how much I might want to go, there’s always going to be places I will never be able to visit because of accessibility issues.
I’ve endured a lot of teasing, a lot of name calling, a lot of people making me seem unreasonable for asking for accommodations, a lot of people accusing me of faking my disability or using it to get special treatment, accusing me of not actually being disabled, and about a million other things.
There’s no way even the most resilient person (something I openly admit isn’t a strength of mine) wouldn’t have their perspective shaped by all of that. That perspective has led me to feel, over and over, that the world generally doesn’t care about me. That I don’t fit in. That I don’t deserve all the same experiences and things that able bodied people have because I was born with this difference.
So here we are in 2020. In a true crisis. Over 3,000 people have died today alone, many of whom are older or have underlying health conditions (though at this point, plenty of young, healthy people are dying from it too). It’s a time when I hoped that maybe my own country would care enough to try to protect me. To try to protect all of us after all we have had to endure growing up being “different” and all that comes with they. But it didn’t. My country and many of its citizens have done absolutely nothing to protect me. And in fact, it seems most people think I should just be happy to sit at home all day everyday so I don’t get sick while they go out and live their lives and spread the virus because they don’t have an underlying health condition. It’s become every high risk person’s job to carry the burden of every irresponsible person in this country who was “tired” of the virus and decided it wasn’t their job to be safe for anyone.
To have grown up feeling generally uncared for in the larger sense (certainly not in the sense of my parents and good friends who care a great deal) and then to have one of the worst situations presented at our doorstep and the response be “nope, I don’t even care if you die”, by our president and by some people I considered friends or family, is a weight that I can’t even fully begin to describe.
There are so many people doing the right thing. There are many able bodied people just as scared of dying as I am or of losing a family member or friend. I don’t want to minimize that in any way. I just want to shed some light on why I feel the way I do about COVID, why I’m having such a hard time, and why I’m so angry. It’s not just the pandemic, it’s years of having to deal with my disability that’s shaped my response to it.
You don’t have to think I’m right because I know that what I feel and why I feel it is valid. I know that what I’ve written here sadly won’t change the people’s minds or actions that need it the most. But I needed to get it out regardless. I needed to get it on virtual paper. I’m fucking fed up and this has really become my best outlet for coping besides throwing a chair through a window which sometimes I really wish I could do.
I know to many it may sound like I harp on the same thing over and over, especially this year. That I should just “get over it”. But this is something I have to deal with over and over. I never get a break from being disabled. I never get a break from having to deal with the anxiety, the stress, and the depression I have as a result of it. Before COVID, there wasn’t a day that went by where I wasn’t having to confront some kind of issue or make peace with something related to my MD. I often asked the universe for just one day where I could not have my MD be an issue or not have to worry about it. Now, I’m at home but what I’m facing is on the news or a social media feed or in our conversations everyday. I’m trying to cope with living somewhere that has made it abundantly clear that I don’t matter.
Sending love and wishes for health and safety out there right now.