We Are Not Dispensable

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Disability and Determination is a weekly newsletter about my experience living with a rare disability (with a little bit of meditation, pop culture, and other random things thrown in). If you like this post, give me a like below. This will help me get discovered by others on Substack. Drop your email in the field at the bottom and click the Subscribe button to be notified of future posts, or if you want to contribute, I offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕

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The point of this Substack is to talk about my experience in the off chance it might help someone else feel understood or it might make someone aware of something they hadn’t been before.

I generally try not to tap back into my anger about 2020 and the COVID pandemic. It was a really rough time for me mentally (it was for a lot of people who are a part of vulnerable communities), and the anger isn’t going to do anything to change then or change the now.

That being said, the election has brought up some of those feelings again. If I could sum up how the entire COVID experience made me feel, it would be this: dispensable. Some people may say that sounds dramatic, but it’s not. At every turn the country sent the message that “we don’t care about you, your well-being, or whether you die or have permanent damage”. From complaining about mask requirements and vaccines to then just pretending like everything was “over” while thousands of people still died from it every week, I felt like I meant nothing outside of my family and friends that understood. I still feel that way sometimes as people choose not to get tested, choose not to tell me when they’re sick, or wear a mask for a time before they see me. On top of having to listen to all the roundabout and passive aggressive ways of telling me that I’m just supposed to get over it and the insinuations that I’m “crazy” to still wear a mask or try not to get sick.

So what does that have to do with what’s going on right now? Though it hasn’t been officially confirmed, the soon to be president is planning on appointing someone (who is also not even worth naming) to be in charge of healthcare that doesn’t believe in vaccines and thinks seed oils are the real problem in this country. That’s on top of the soon to be president planning to completely eradicate the Affordable Care Act (ACA).

That once again sends the message that vulnerable communities and people like myself don’t matter. I wouldn’t expect anything else from a person so full of hate, but it pains me that anyone who knows me would vote for him, knowing this is what would happen. The message it sends is “well I’d rather have cheaper eggs and gas than for you to have life saving healthcare”.

My life was vastly changed in 2020. I can’t do a lot of the things I used to. I used to travel internationally every year and I don’t know when I’ll even be able to get on plane anymore. I used to see my best friend every year and I’ve only seen her once in 5 years because I can’t risk getting sick. I can just sit in a movie theater and eat popcorn and drink soda. I can’t go into work without my face being covered. People just gave up. Gave up on the seriousness of the pandemic and it feels like, gave up on me.

If the healthcare so many of us need to stay well gets taken away too, then it’s more proof that we really don’t matter. We’re just supposed to stay home for good while everyone else gets to live their lives fully because there’s already something “wrong” with us. The onus is forever on us for everything, but especially for keeping ourselves healthy. And if we get angry about it? Well then we’re just unreasonable.

I’m continuing to try and navigate this dumpster fire not only for my mental health but my physical health (which is already going through so much). If I get too worked up about all of this, I increase my chances of getting sick. I have to figure out how to keep fighting the good fight because none of us in the community deserve what’s happening right now. We do matter and our lives are very much worth it and very much worth saving. We are not dispensable and I’m going to be here to make you feel as aware of that as I possibly can for the foreseeable future.

❤️☮️