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I gotta be honest, it feels like we are living in an alternate reality. Like, I am going to wake up and the pandemic will have been one big, long, bizarre dream. (Nightmare.) And when I talk about it, no one would have a clue what I am talking about and they would look at me funny.
Upon my waking up, no one would be on a ventilator fighting for their life to breathe. No one would be screaming about their right to get a haircut. Teens wouldn’t be having COVID parties to intentionally try to infect themselves with a deadly virus.
I would be able to travel again freely. I would be able to go to the park and not be afraid of folks without masks who don’t care and get too close to me, which shoots my anxiety through the roof. Parents would not be overburdened with having to work their jobs at home while providing education, entertainment, and social interaction for their children. People would not be suddenly jobless and waiting for the government to help in a meaningful way because they cannot work.
But this isn’t an alternate reality.
Instead, I am living in a world where I am considered less valuable than someone who doesn’t have underlying health conditions. If I were to get sick, I may be left to die. And I would be left to die alone because COVID-19 guidelines won’t allow family or friends to be inside a hospital at this time.
My reality is that people would prefer that folks like me hide in our houses so that they can go freely about their business and pretend the COVID-19 pandemic is not happening. People do not want to protect those at high risk because of underlying medical conditions. They want to have fun and live their lives without worrying about people like me.
My Life Is Valuable
I live in a world that was not built for me. I don’t function in the same way as able-bodied folks do. I have to plan my tasks so I can have enough energy to get them done. I cannot overcommit myself or I will end up in a huge flare. I cannot walk or stand as long as a healthy person can. I have to use my cane when the pain in my hips gets too bad or when my bursitis flares up.
I have sensory processing disorder, so I had to create a haven of sensory calmness at home to help me function better. I cannot tolerate loud noises or bright lights and certain textures wind me up. I have to work twice as hard to do half as much as others do. There is so much more to mitigating and living my life, but I am writing this to say one thing:
My life is just as fucking valuable as that of any able-bodied person.
And my right to walk about freely — without fear of COVID-19 infection — is just as important as that of a healthy person’s.
It is unfair — and, frankly, shameful — to ask me to live the life of a hermit so you can go drink at a bar. You have no right to be so damn selfish so that you can go out and have a party with 30 of your closest friends while I sit at home unable to safely go to a grocery store.
Disabled folks have every right to live their lives, be accommodated with jobs, be considered when constructing buildings, and not be harrassed for utilizing closer parking spaces. We have every right to be allowed to function and to be seen.
We are not going to sit back and be quiet so able-bodied folks can run around and spread this virus without a care in the world.
We see you every day; we live in your world. We will no longer sit back and beg for your consideration.
I Have Every Right to Exist
I exist. I have every right to exist. Just because I function differently does not mean I am any less valuable. Just because I struggle with brain fog and cannot output results in the same way as others does not mean I am not a valuable employee. I am sick and tired of hearing others scream about their personal rights and freedoms being encroached upon.
Do you have any idea how invasive and rude people are when they find out I have a disability? Do you have any idea how many so-called “cures” are thrust upon me by people with no medical knowledge because folks are uncomfortable with the fact that I live in pain 24/7? Do you have any idea how many pitying looks I get when folks ask me about my pain or my life? Do you have any idea how annoying it is to be diminished to the status of just my disability, then diminished even further because I do not produce in the same way that others do?
None of these things make me any less valuable or my voice less important. None.
Your right to “get back to normal” is no more important than my right to be out in the world in a way that is safer for me.
The World Has Changed
The truth is that the world has changed. And it will never go fully back to the way it was.
This does not mean we are doomed or that life is broken and there is no reason to live. This means that if you want to be happy, you have to adjust. This means you have to face the fact that life will not go back to the way it was, but you are still alive and there is still so much to be happy about and to enjoy. It is about calibration so that ALL of us have a chance to live life freely and walk around without fear.
This is the mantra of my life as a disabled person.
My first chronic illness was rheumatoid arthritis, then fibromyalgia. Because of my health issues, I do not know how I will feel when I wake up each day. I do not know how much pain I will be in or what I will be able to do from day to day. It is a frightening and, at times, overwhelming reality. In order to function in this body that is unreliable and gives me more grief than I could ever express, I have to be flexible and take those little moments of joy whenever I can. I have to be grateful for what I can do in the moment. I have to be able to assess where my body is at before I commit to a task or responsibility.
Instead of focusing on what I have lost, I have to focus on how strong I am and how resilient I must continue to be.
I have to constantly remind myself that I am not my disability — that it is only a part of me. I know that I am a good artist, that I crochet, that I am loving and kind and good to the people around me. I know that I am a good partner and a good friend who helps people be a better version of who they are by appreciating them wherever they are at. I have to remind myself that I am creative, analytical, and a good problem solver.
I am not a Pollyanna. I never have been and I never will be. I actually tend to be very cynical and cannot stand when folks are too chipper or hyper or happy.
I am also a realist.
Our New Reality
It is reality — our collective, societal reality — that we are in the middle of a pandemic that requires all of us to wear masks, maintain a social distance of at least six feet, have social events online or in other safe, distant ways to combat loneliness, and go without certain niceties because they can increase our risk of spreading the virus.
We all have to learn to function in this new and different world. Please remember that I have a right just as much as you do to live my life and not be confined to my house because other people are selfish and engaging in whatever activities they want, which in turn spreads the virus and makes the world less safe for sick and disabled people like me.
And I won’t be quiet about it.
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