adudeandhispetdisabilities-blog

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There is no level of disability where someone loses their humanity

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[adudeandhispetdisabilities-blog]

I hesitate to say this, because I don't want it to be misinterpreted as encouraging doubt of disabled people's realities. Definitely, whether someone "looks disabled" to you or not, believe them about their body.

That being said. Hypermobility =/= EDS or some similar CTD (at least not necessarily)! I see too much lately, as EDS awareness grows, of people seeing a gymnast/contortionist/wacky flexible actor or comedian and saying "OMG that person has EDS!" I see it even in the EDS community.

The problem with this is that it is actually possible to have benign hypermobility without systemic symptoms or being prone to joint injuries due to instability. But when people assume it's all the same thing and they see a person bending their joints into pretzels, who is otherwise a completely "normal" person who doesn't identify as disabled and doesn't have problems that interfere with performing necessary tasks, it casts doubt onto those of us who ARE disabled by connective tissue disorders. It makes people ask why, if we're the same as that flexible but otherwise normal person they saw, we can't just do everything everyone else can, too.

If a person, whether they look physically disabled to you or not, whether you've ever seen them bend their limbs wildly far or not, etc., has an actual diagnosis of a connective tissue disorder, then of course believe them. But claiming every flexible person you see does without a medical opinion actually might do more harm than good.

[adudeandhispetdisabilities-blog]

Not Diagnosed Early =/= Not Symptomatic Early

So often it seems like, when a person is diagnosed with a lifelong disability/illness that stems from a congenital condition as an adult or even in later childhood/adolescence, there's an attitude of "You must be very mildly affected or else you would have been diagnosed young."

That's not always true, though. These assumptions are made based on a model where people seek out medical attention as soon as symptoms appear, and that's not the reality for a lot of people. A lot of people grow up poor, or in remote areas - whether rural communities or neglected inner-city neighborhoods - where medical access is limited.

Maybe they have parents who are busy trying to survive and support them and aren't able to address these things early. Maybe they have parents who fight hard to be taken seriously but are dismissed because they are poor and uneducated. Maybe they have parents who are dealing with their own undiagnosed/untreated medical problems, maybe going back generations, and "just dealing with it" is all they've ever known.

So they go through their childhood visibly disabled but unnamed, the people in their lives just doing the best they can to accommodate them, using whatever works without ever having an official name for the reason why.

In the case of neurodivergent kids, it's often treated as a "behavior" problem that's responded to with punishment instead of treatment and accommodation in these communities.

All this adds up to someone who gets a late diagnosis because it was the first time they had medical access, or because their symptoms had worsened to the point where they were totally disabling and forced their hand, and then people react to it as if they must have only recently become *symptomatic* so therefore it couldn't be all that bad.

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Ohhh man. This is the workplace for me. I KNOW that the supervisors are annoyed with me for always being the one asking them questions, but we are supposed to ask them what to do in each situation and the other employees apparently consider similar situations to be the same situation and they don't need to ask again, whereas I believe I need to know what the supervisor wants me to do in *this exact situation.*

Dear neurotypical people and allistic people…

Autistic people get crap for not asking for help “sooner” when we’re found floundering around in frantic, frustrated confusion. 

The irony is when we do break down and ask for help or clarification, we get told “you should know that already”, or that “it’s silly that you don’t understand something so simple” or, my personal non-favorite “I already explained that to you!”

Or we see you roll your eyes, hear you sigh, hear your voice get that annoyed condescending tone and have to listen to you talk to us like we’re the most unintelligent things to grace your presence.

Can you stop doing that shit to us?

Some examples of questions I might ask someone may be:

“When you say smaller, do you mean shorter or narrower or literally smaller in scale with the same proportions?” “Do you want the shade of purple lighter and closer to pink or darker and closer to blue?” “If you say a lot of that, do you want 20 copies or a higher number of copies?”

Luckily I’m mostly around people who know I think in specifics and will be specific for me, but during my teens I had the opposite. It messed me up for asking for help as an adult.

Many autistic people are terrified to ask for help when we really need it because it’s a huge hunk of emotional labor and oftentimes the payoff doesn’t get us the answers we need to do something we’re expected to do.

Just answer the questions we ask even if it’s the 902834092834th time we asked about it. I know it’s annoying, but we want to do our best and how can anybody do their best if the help they seek makes them feel bad about themselves or question their intelligence?

[adudeandhispetdisabilities-blog]

I put the fun in executive dysfunction

[adudeandhispetdisabilities-blog]

Those videos make me so sad. When I got married? We had a sit-down wedding. My wife and I sat on a pretty bench to say our vows so we could be the same height.

Disabled people, if you're gonna marry someone? Marry someone who meets you at your level instead of expecting you to meet them at theirs.

Is “Ablenormativity” a Thing? It Should Be.

I keep thinking about cisnormativity, heteronormativity, and all the other ways the dominant cultural narrative frames success for marginalized people as the closest possible emulation of that narrative.

I’m talking about the idea that it’s better to always be struggling and suffering on the inside as long as on the outside you LOOK as much like an abled person as possible.

Ablenormativity is not actually caring about disabled people, because you only see us as valid when we show you how we can be “just like you!”

Ablenormativity is applauding the person with a physical disability who walks, even though it causes pain and fatigue and limits their freedom to do the things they want to do, that would be easier with the use of a mobility aid.

Ablenormativity is applauding the autistic person who makes eye contact and doesn’t stim, even though forcing themself to fit that mold is uncomfortable and causes them stress that takes energy away from the things important to them.

Ablenormativity is applauding the intellectually disabled person who works a job, any job, for any wage, and considering that fulfillment without ever asking the person what they actually WANT.

Ablenormativity is ignoring or deriding the disabled people who choose to use adaptive equipment *because it makes life easier*, not necessarily because they are completely unable to function without it; who have to choose between working a conventional job and having a life outside of work and choose the latter; who have goals for themselves that don’t include blending in with abled people whatever it takes.

This idea that the appearance of abledness is the ideal we should all be striving for is just as damaging as the messages from the dominant culture narrative to other marginalized groups that they should assimilate and be just like “normal” people. And I choose to resist this.

[adudeandhispetdisabilities-blog]

when u scratch a cat’s chin and they lift their head up reblog if u agree

[adudeandhispetdisabilities-blog]

Is "Ablenormativity" a Thing? It Should Be.

I keep thinking about cisnormativity, heteronormativity, and all the other ways the dominant cultural narrative frames success for marginalized people as the closest possible emulation of that narrative.

I'm talking about the idea that it's better to always be struggling and suffering on the inside as long as on the outside you LOOK as much like an abled person as possible.

Ablenormativity is not actually caring about disabled people, because you only see us as valid when we show you how we can be "just like you!"

Ablenormativity is applauding the person with a physical disability who walks, even though it causes pain and fatigue and limits their freedom to do the things they want to do, that would be easier with the use of a mobility aid.

Ablenormativity is applauding the autistic person who makes eye contact and doesn't stim, even though forcing themself to fit that mold is uncomfortable and causes them stress that takes energy away from the things important to them.

Ablenormativity is applauding the intellectually disabled person who works a job, any job, for any wage, and considering that fulfillment without ever asking the person what they actually WANT.

Ablenormativity is ignoring or deriding the disabled people who choose to use adaptive equipment *because it makes life easier*, not necessarily because they are completely unable to function without it; who have to choose between working a conventional job and having a life outside of work and choose the latter; who have goals for themselves that don't include blending in with abled people whatever it takes.

This idea that the appearance of abledness is the ideal we should all be striving for is just as damaging as the messages from the dominant culture narrative to other marginalized groups that they should assimilate and be just like "normal" people. And I choose to resist this.

[adudeandhispetdisabilities-blog]

Forever straddling the line between sharing stories of disabled people who accomplish things they haven't been traditionally expected to, not because disabled folks can't do those things but because they have been denied access to them for so long that it's an especial achievement to break down the barriers, and leaving them alone because they border on inspiration porn and implying that it's a big deal if a disabled person does anything ever.

[adudeandhispetdisabilities-blog]

I give myself permission to not strive for the closest approximation of abledness.

[adudeandhispetdisabilities-blog]

Bathroom mirror selfie because I'm determined to feel good about myself.

[Image of Gabe, a short dark-haired Ashkenazi man with square black glasses wearing teal pants and a teal-and-maroon striped shirt, sitting in his sparkly white wheelchair in front of a public bathroom mirror with his phone camera in his hand.]

[adudeandhispetdisabilities-blog]

[Image text: “#autismawareness How would you feel if your parents were raising money to research how to make sure nobody ever has a child like you?”]

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Yes, we need to celebrate LGBTQ+ disabled and neurodivergent youth. But. We also need to recognize and celebrate LGBTQ+ disabled and neurodivergent youth who took longer to figure it out or didn't have a lot of early queer experiences because either 1) disabled desexualization or 2) compulsory heteronormativity was forced on them and their disabilities delayed them in overcoming it.

[adudeandhispetdisabilities-blog]

So much truth here, especially the part where the pop-culture version rarely shows physical/mobility difficulties as being part of it. Because of the constant emphasis on coprolalia, people tend to think it's a psychiatric disorder rather than a neurological one and never understand if you tell them you have trouble walking or performing tasks because of tics in your limbs. The worst ones I get are at the base of my spine and I can't even move when they happen but that's not funny so you never hear about it.

Hot Take:

Some people don’t find cussing jokes about Tourettes funny, including myself. I don’t dislike them because I find them offensive, I dislike them because they’re stale, in poor taste, and only serve to enforce a stereotype that effects my daily life.

Which in and if itself wouldn’t be so bad when you can just explain “nah I don’t cuss”, except what usually happens is– whether or not you’re able to tell someone beforehand that you have tourettes– people have a preconceived idea of what Tourettes is and isn’t.

So either they don’t recognize it when they see it, or you tell them and they say its fine, then when it’s not what they expect it to be it becomes a problem. A couple examples:

One of my highschool teachers told all the students she could, that my Tourettes wasn’t real and that my doctors note was fake. I had continuous problems with her until one day she just plain sent me to the office and I told the principal what was up. She continued to spread rumors after that, and none of this is to say what the other students got up to.

When I got a job I explained that I have Tourettes, and my boss said that was no problem. It suddenly became a problem when I wasn’t able to use one arm because it was ticking so bad, and her suggested solution to ‘calm down’ didn’t work.

If you don’t have Tourettes, you do not get to say it’s not a big deal. You don’t have to face the repercussions no matter how big or small they may be.

If you do have Tourettes, you don’t get to tell other people with Tourettes that it’s no big deal either. People do not automatically have the same experiences with the same problem.

[adudeandhispetdisabilities-blog]

Here I can have one blog for thoughtful, analytical disability rights activism and one for fandom trash talk and pictures of manatees.

reasons I’ve seen people staying on tumblr:

don’t understand twitter

don’t understand twitter

posts are in chronological order

spite

no other website has the same ambiance of gothic confusion and unrelatable obtuse content

they are a hapless pornbot who knows not of the end coming for their quivering female presenting nipples

mega spite

 like normal spite but you’re posting dick pics before The End

Direct Contact with the Memes

god, wht the fuk even is twitter

they tried to leave but woke up again on tumblr like it’s the Groundhog’s Day movie

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I got married.💕

[Image of Gabe, a dark-haired Ashkenazi man with square black glasses, wearing a black shirt, teal suspenders, and a teal kippah, and his wife Lyssette, a Black woman with long black braids worn in a twist, wearing a teal dress and a teal fascinator veil, both sitting in Gabe's turquoise wheelchair which has a sign on the back that says "JUST MARRIED."]

Photo credit: Alex Fradkin