Today I am doing my best to face the challenges of the moment with strength and grace, and I'm so f***ing tired. I wish my best was better but this is the moment I am having right now.
The experience of being disabled in America is brutal. Your dignity and safety are assailed daily from an exhausting number of directions and sources.
You exist in a space where you are simultaneously isolated and no longer have a right to privacy. You are forced to advocate for yourself when you are least able. That advocacy requires that you put your disabilities, life, and medical history on full display to anyone who asks or lose credibility.
Putting yourself on display like that is a multifaceted experience. It can be scary, an act of desperation, vulnerable, empowering, unsafe, a lifeline for yourself and to others, courageous, humiliating, humbling, stressful, and so much work. Endless work.
Any interaction can instantly turn into one where the other person decides you must on the spot justify that your life is valuable enough and that you are worthy of existence. In order to do that you have to fall into a narrow accepted view of what abled people think is the right flavor of the disabled. If you fall outside of those expectations - good luck being taken seriously.
If you focus on advocacy for the community you are part of instead of trying to save the world you are disparaged for not doing enough. I only have enough spoons to put any effort towards saving the world once a week now. I am not apologizing. I will only promise that my goal that a rising tide lifts all boats.
In this situation, I have very few options I have to face this moment with as much grace and strength as I can muster. Nothing else is deemed as an acceptable response if I am to remain worthy of dignity as a disabled person.
Am I going to face this moment to the best of my abilities? Yes. It's an ingrained trait and I literally have no other options. I'm just pissed about the nuances of how disabled people are perceived and then judged as worthy or not.
I am actually quite a shy reserved person. I am mostly an introvert. Existing so openly online is at times very challenging for me. Its work. It's work that's easier to make myself do for the benefit of the COVID Long Hauler community. I have to justify the invasiveness to myself some days to open up.
When I have previously done things that were outside of my introvert comfort zone its always been on my terms. My independence, autonomy, and agency are things I feel fiercely protective of. There are times the circumstances of my new life challenge them and it causes me a great deal of emotional distress.
There are moments I resent feeling like I have to market myself correctly to survive. I am disgusted with myself when thoughts like that spring up. In those moments it feels like I am forced to exploit myself and the worst thing that's ever happened to me in order to survive the worst thing that ever happened to me. Its cruel a cruel trap and I wish I weren't aware I am in it.
It helps to remind myself that this is my actual lived experience. I am genuinely this person (probably because I had no choice my whole life) and showing up as my authentic self is never wrong. It also helps to remind myself that in my before life IRL I was happy to talk about the things I am sharing now with people. I just wish it was a choice instead of a matter of necessity because if it was a choice I would have left this up to better-suited people. One of the blessings that has come out of this are some of the people I've come to know in these online spaces who have been these wonderful bright beacons of joy in the void.
It's an uncomfortable moment to be self-aware.
Speaking of- if you know of anyone who would enjoy following a disabled, queer, poly, sex-positive, writer please share my page with them and let them know why you enjoy reading.
Enjoy this picture from the before times.