About the author: Vivian is a queer and disability advocate and writes about her life with cfs/me, CAEBV, and hypersomnia. Read more about Vivian's life in her blog, here.
My New Years resolution is to say "no" to things more often. I am disabled and have limited energy- if I choose to use it on you, that’s a privilege. If I choose to go out of my way to be a caring friend despite my debilitating fatigue and the dumpster fire week I had, yet you’ve done nothing in return for months now, it can feel like a slap in the face.
This obviously doesn’t go for everyone or even casual friends or acquaintances — and it would be ridiculous to expect everyone to be by my side at all times, or any amount of time. However, if you’re a major part of my life, that’s where the bar is.
Being my friend is a privilege. Again, if we both see each other as *major core friends*, yet you ignore or don’t accommodate the accessibility needs of that which I communicate, never reciprocate, or falsely assume I have endless funds to pay for treatment (hint: I don’t!) we aren’t friends.
This extends to allyship in the sense of being one only to an extent. If you have ever made fun of someone for a neurodivergent behavior such as “oh they wore the same sweater 3 days in a row once”, “they have this weird interest they’re obsessed with”, or “they’re crazy right?? I’ve seen them talk to themselves”- you’re not an ally. All of those are traits that heavily relate to depression, schizophrenia, and or autism. If someone corrects you the first few times and you also had no idea those actions were potentially a neurodivergency, that’s okay (at least by my standards).
But my expectation for allies is the next time you think about mocking a habit (tics, repetitive behavior, an altered state of reality, compulsions, meltdowns)- reconsider if it’s really all that “funny” of a joke to make.
We are taught that cutting people off or setting expectations is harsh, unstable, or rude. We are also taught that ableds accepting us despite our outward demeanor are going above and beyond or are “bending over backwards”. That is ultimately ableist and not productive for disabled people. If you’re a disability ally, you need to actually earn that title of that. The same goes for being an important part of my life.