My manual is not meeting my needs and keeps breaking. Its old and is put through a lot of intense use everyday, so it has simply reached the end of its life. That’s to be expected.

But the inadequate support is frustrating. It frequently leaves me housebound because I do not have the energy to sit up or push, even with my smart drive. I get stuck without groceries, meds, laundry etc and have to call in my family or friends to help. I cannot sit in my chair for long or I will start to wilt, and have to go back to my bed, propped up.

So my PCP wrote the script and I’m headed to the OT for a new chair.

The internalized ableism is real. What is it about getting a more “intensive” chair that feels like giving up? It’s like, manual chair = an inspiration. Power chair = such a pity. In my head I imagine how it would feel, the ease, comfort, and support, and it makes me excited. But then I look at them and I’m filled with this intense discomfort.

A lot of it is around the fact that I’m an actor. Being a disabled actor is hard enough, but people perceive active chairs very differently from powered. As well, the freedom of movement from a lightweight allowed me to dance! I love dancing, I just haven’t been able to do it with this recent relapse in my health. Still, I keep thinking, what if I feel up to it again? Then I won’t have a chair to do it in!

I just hate being stared at. I hate how I’m treated for being disabled. I hate how difficult it is for me to navigate the world. I hate how this illness has taken over my life.

I wish insurance would allow me to get both a chair for my good days and a chair for the bad. Dynamic disabilities don’t get a break. I wish I could request what I need to live a fulfilling life, not just to survive on the bare minimum.

And I wish society didn’t have this weird nasty ableism ingrained in my brain that makes me hate myself.