Being Disabled Is Exhausting

I’m sorry that I can’t show you my fatigue levels like the battery on my phone.

This week has been an epic shitshow for a plethora of reasons, none of which involved the royal family, for once. Having spent last week squatting over my tax return begging it to write itself, I manifested this week to spark joy of clean-closet proportions, but the opposite happened.

I went to a gig. It was a standing gig in a small venue. The helpful member of staff on the door offered to put a seat near the stage so that I could sit down. Call it crip privilege if you like—but I’ve already named it, “Being able to fucking see.” On the way to my seat, my companion and I were verbally abused by members of the crowd, like high schoolers at a Swift concert, all righteous-indignation, ready to eat our flesh in the apocalypse, even though we’re diseased. Because we’re going to die first, anyway.

Despite disclosing my disability in the crowd, I was passive aggressively let through by well-dressed puppets who acted as though they’d never seen a sick person in their lives. I was also separated from my partner, who was shouted at for standing in front of people who got there first. My anxiety was an expensive injection—stinging as it stabbed, intent on plumping. I cried—the least cool thing you can do at a gig—because I was reminded that I’m less than, that public spaces aren’t built for me, and accessibility’s a lie created to make other people feel better.

As if verbal ableism wasn’t bad enough, I was also reminded that my driving license is reviewed every three years. Every detail I disclosed on the form was not enough, and my doctor has to get involved to help make the decision. Basically, I’m in a completely contradictory situation—not deemed disabled enough to get financial support of any kind, but disabled enough to get rejected for tools that improve lives. In this grey area, I’m both shamed for not looking sick, and denigrated for having a condition that limits my life. So which fucking side should I stand on? Which one has nicer donuts?

The fact that half of disabled people lost their benefits when DLA became PIP proves that being disabled is fucking hard work. Despite being diagnosed with life-long, and sometimes degenerative, illnesses and disabilities, we’re made to reapply, prove for the fifty millionth time that we’re not lying. Even though there’s no cure for my condition, I’m constantly reassessed, mushed into the grater against my will, coming dangerously frayed out the other side.

I am exhausted and I’m not the only one.

It’s terrifying being disabled, especially in public places like gigs and bars. I’ve desperately been trying to prove that I can still do it, that I can experience live music like everyone else. But that’s simply untrue. I’m sorry that I can’t show you my fatigue levels like the battery on my phone, and I can’t accurately recreate my nerve pain to make you understand.

Society is not set up for someone like me, and for every concession made, another is stripped in its place. I’ve had it with harassment. Verbal abuse can suck it. I don’t want to prove, one more time, that I’m irreversibly crippled. I just am, and I’m very fucking tired.