I’ve been living with this for over 25 years. I’m not dead yet. I’m in denial scleroderma will kill me and I think that works for me. I take my meds, I read up on breakthroughs and I love going to patient conferences. I avoid support groups like the plague.
I’m working on a web series called Scleroderma in 60 Seconds. I’m still editing it, sort of- I have editing to do for school so my web series will have to wait until April.
I’ve been kind of laying low on social media. I was blocked by a disability advocate. It was a person in a wheelchair and I probably deserved it. I just can’t get into the ableist argument. Yes, I do think that disabled actors should be used more, but only if they are the best actor. It’s how I feel about the portrayal of veterans. I think a veteran should be chosen for the part, but only if that person is the best actor.
Of course, I agree that people who are not disabled can’t know what it’s like to be disabled, no more than someone who is a not a veteran knows what it’s like to be in the military. By that logic, no one should be an assassin, unless they are really an assassin.
An assassin is probably not the best example. I mean there are no assassins out there trying to raise awareness about assassins. Are there?
How about writers? Should I only stick to writing parts for people with scleroderma and contractured hands? That makes more sense than assassins.
Can I write about different cultures if I study them and respectfully tell their story and consulting with people of that culture? I certainly cannot portray a race using blackface. There is something there, but I can’t equate it to blackface because there was no equivalent to minstrel shows and slavery with disabilities.
Am I a self-hating ableist? I want my disabilities to have a cure I and want to work around them. I make accommodations whenever I can. Yet I read disabled activists’ work and just wanting to have the use of my hands back is a mortal sin to some disabled activists.
I search for commonalities, sometimes I ask questions but I would like to have conversations about disabilities with able-bodied people without calling them names.
Maybe I would have more readers if I called everyone an ableist. When I tell people about what I have if I need accommodations they are usually friendly, but if I called ahead maybe they would be more likely to be rude. It helps that I don’t need a ramp to get in the door. And because usually because I can get in the door and I don’t call ahead.
Maybe I’d have more readers if I attended support groups. I’ve been writing a blog for 10 years trying to raise awareness of scleroderma. Support groups are about acceptance and I prefer denial. I would do stuff with other patients like see movies, have dinner, hiking anything but sit around and talk about being sick. I do that enough at my doctors’ offices.
Accommodations that work for others, don’t work for me. I kind of have to compromise. In the case where I was blocked, I disagreed that there should be toilet paper rolls available at every height level because lining the walls at every height level in every stall doesn’t seem practical. What if one of the rolls run out? Wouldn’t that make less room in the stall? Doesn’t a smaller stall make it even less accessible?
Able-bodied people leave nasty notes on cars of people who use handicapped spots because that person’s not in a wheel chair. People in wheelchairs write about people not in wheelchairs using disabled stalls. If I use a disabled bathroom stall because I injure myself in smaller stalls because I cannot bend my elbows enough, do I have to explain to everyone when I walk out why I used the disabled stall?