Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Friday, November 15, 2013

Mine and Thine for Disability MOOC

Trigger Warning: References to ableism, death
 
I did the mine and thine exercise, approximately. I say approximately because in quite a few cases, the thing that I would be most frustrated by getting is not the thing that the friend most dislikes. [Cerebral palsy versus anxiety is the big one there- since I've already got anxiety issues, I'm kind of used to it. I don't have cerebral palsy and it's hard enough to play my particular set of sports while dyspraxic, so it'd be not so awesome for me to suddenly have it. Which I think kind of illustrates the point: the challenges we've already got aren't as big a deal to us as the ones we're not adapted to.]

I also realized just how many of my friends are also Disabled. Multiply disabled, in many cases.

In terms of disabilities, I came up with: blindness, cerebral palsy, epilepsy, depression, autism, anxiety, Ehlers-Danlos, ADHD, dyspraxia, PTSD, sensory processing disorder, and unspecified heck if I know extra medical issues. Yes, that's five friends. I think four friends is the shortest list I could pull that list from, no, I'm not telling you which friends.

I'm leaving unspecified off because I don't know what they are.

For my personal ordering of what I think would be most frustrating for me to adapt to, and let's be real here, I would adapt because that's what humans do, it's epilepsy. (See also: one of these things is not like the others... sudden unexpected death from epilepsy is a thing. I'm fairly sure none of the others can be directly fatal without the aid of outside factors.)

Then comes blindness. My auditory processing isn't good enough to do well with a screen-reader, so I'd need to learn braille, and adding an extra language is obnoxious, in terms of why blindness would be frustrating. Also, from the experience of a Blind friend, people tend not to to image descriptions. Access barriers. They would be obnoxious.

I think depression is next. The executive functioning issues I've already got because of other stuff, but I prefer not thinking the world is horrible and that nothing is worth it. It would make it harder to use caring about a thing to eventually overcome the executive dysfunction pile of messyness.

Now cerebral palsy. I like playing Ultimate, and that'd be harder with CP. Also, ramps. They are insufficiently good at existing where I want them to exist.

Ehlers-Danlos/PTSD are next as the ones where “This would really stink. But I'm not actually convinced I don't have the thing. I'm not sure what I would change, actually.”

ADHD I seriously might as well have. Pretty sure the only reason I don't “have” it is because the person evaluating me was aware of the whole “don't say ADHD and autism at the same time” thing in DSM-IV-TR.

Now for stuff I do have.

Anxiety is obnoxious. I would like to get rid of this one, thank you. Unfortunately, most of the stuff I am anxious about, it is because this stuff actually does happen. That means that even if “this is not realistically going to happen” did work for anxiety (if you think it does, then clearly you have never had anxiety) it wouldn't work for me because this realistically is going to happen. Does that even still count as anxiety?

Sensory processing disorder is also obnoxious. If I got to keep the ability to stim while getting rid of this, I would do it. Otherwise... frustrating as it can be, yeah, I'll keep it. Not even “I'd take it over thing X.” Just “Between having and not, I'll keep it.”

Dyspraxia can go away, please. I'd like to stop walking into walls and falling over and such sometime before aging causes me to start falling over again? Yeah that's not happening. Kind of obnoxious.

And now autism. I'm Autistic. Notice that this is the only one where I insist that I am going identity-first here and I am capitalizing it. This should tell you something about how I view autism. I want nothing to do with a cure, I want nothing to do with suddenly not being Autistic anymore. I'm keeping this, thank you.

So what do I learn? I learn that some of the disabilities we've already got, we might want to get rid of because it's obnoxious to deal with, some are just part of what is, and some we would fight to keep. As far as ones I don't have, I generally don't want it. If I don't mind much either way, chances are I've already got a lot of the traits.

That's my thing from mine-thine. Since I saw, “if you have a disability, describe your reaction to this week's lesson,” here's that, quickly. I admit it. I wince every time I see autism used as an example when touting person-first language, because as an Autistic person, I know autism is a disability that doesn't have that kind of consensus. It's important to respect people who want to be referred to that way, yes, but it goes both ways and I am Autistic not a person with autism and telling me I am a person first is the opposite of helpful my problem is with people refusing to acknowledge the ways I am different. I winced when one person with a disability (names, faces, what are these? Remembering names and faces isn't a thing that happens) said that he thinks people with disabilities are demeaning themselves when they call themselves “cripples,” because that's not what they are and they're people first. He has the right not to want that language himself, and to have his desire not to be referred to that way respected. It's not his place to tell other Disabled people they can't have it. It's not his place to tell them what it means for them. Just like it's not mine to tell him he should call himself parapalegic instead of saying he has parapalegia, it's not his to tell other disabled people what they call themselves.

1 comment:

  1. Ehlers-Danlos is PRETTY bad. I have it. Do you wake up and spend hours trying to get out of bed because your shoulders/hips/clavicles are dislocating painfully and you can't use them normally or put them back in the socket? Were you told that you might need surgery somewhere along the line to correct a deteriorating mitral valve and/or aortic valve? Do you have trouble standing because your back aches and your knees are giving way and you are afraid that if you talk about it you will be perceived as a wretched complainer? It's hard to live with Ehlers-Danlos. This is what I have to deal with every day. Think about it for a while and maybe visit www.ednf.org to find out more.

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