Denied Disabilities, Denied Needs, Denied Accessibility, Denied Identity

Dear abled world who is constantly trying to rob me of my identity, this is for you.

 

I’m autistic, I need predictability to be able to navigate. My need for predictability is not an access need to you. My disability is denied. My reality is denied.

I can’t walk more than a few meters, and usually I need crutches. My ability to walk is impaired compared to what people in my age are expected to be able to do. This is usually seen as a valid disability, and my need for wheelchair accessible buildings is most of the times treated as a legitimate access need. My reality is validated.

I have ME. It’s a disease that has caused my inability to walk. Being ill with ME has also given me a shortage of mental energy, and I can’t focus for very long. This is a cognitive disability, but it’s rarely recognized. It’s the kind of disability that does effect my ability to perform in many areas, like speaking with my mouth and processing sounds. This is never recognized as a valid disability. My need for written communication isn’t considered an access need. My disability is denied. My reality is denied.

I have ADHD. I always think of at least 8 things at the same time. It’s exhausting to exist, and I need a lot of quiet time on my own without anything disturbing me. This is rarely seen as a disability. My needs are denied. My reality is denied.

I’m autistic. I need people to say what they mean and stop the camouflage talk, since it exhausts me to decipher and translate non-autistic language all the time. This is never considered an access need. My disability is denied. My reality is denied.

My body is too weak to stand up from the bath tub after having washed my hair. I need a handle bar on the wall and a shower chair to sit on. For occupational therapists that don’t know what ME and POTS are, this access need doesn’t exist and my reality is denied. With occupational therapists that have knowledge about ME and POTS, this access need is recognized and met. My disability is validated. My reality is validated.

I’m autistic. I interpret information differently than what people expect me to do. I interpret myself and my feelings autisticly. I think autisticly. I need to be understood as an autistic person, but that’s not considered an access need. My disability, personality and identity is denied. My reality is denied.

People tell me that I’m not allowed to identify with my disabilities, that I’m not my disabilities. Sometimes people tell me that I’m my disabilities shouldn’t affect my capability, that all I need is some accommodations and I should be able to perform like a person without disabilities. But I am my disabilities. I’m autistic, remember? My disabilities are lived experiences. The way I think and interpret information, it’s not possible to not be my disabilities, but I’m not even allowed to own my identity as disabled without the abled world trying to correct me.

What counts as a disability or as an access need is rarely obvious and just as rarely decided by us, the people with the lived experiences of disability. Pretending that everybody is agreeing on what a disability and a met access need looks like is nothing more than an efficient way to silence disabled people.

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I Was Autistic Even Though Nobody Knew About It

Content: This post includes ableist statements and mentions a wish to die.

 

 

Damn those kids whose parents can’t raise them properly! All those kids who can’t sit on a chair and listen like normal people.

I remember
standing up, leaving the room and running for my life
running for protection from the social rules I didn’t understand
the voices that I couldn’t process
the language that wasn’t mine

You need to stop doing this! Stop leaving the room every time you don’t get things your way!

I remember
the sounds turning into a traffic jam
waiting for processing, but I’m too slow
the load of unprocessed sounds is turning into noises pushing me to the ground
to the meltdown

Why haven’t you done your chores? You have arms and legs that work totally fine!

I remember
staring at the door, trying to open it and get the vacuum cleaner
and I just can’t
because of the noises, smells, movements, words and people from earlier today
everything repeating itself, over and over, and I still don’t understand it

Why aren’t you in school? You’re only allowed to stay home if you’re ill!

I remember
wishing my life was over
being so full of noises, pictures, words, feelings, confusion
desperate from being forced into a world I didn’t understand
rather dying than failing to be a real person one more time

 


We don’t need more awareness of that autism exists, we need real knowledge about what life is like for autistic people. We need to be accepted for who we are, not forced to try to appear as allistic as possible. We need the world to listen to autistic people, and to learn about autism beyond stereotypes.

You were everything that I didn’t dare wanting

So Liz,

Here we go again
the memories are back. The memories of… it. The sense
the sense of not grasping, not understanding, but desperately wanting
the memories of falling

“Come on now try and understand
the way I feel under your command”

You probably didn’t know how much I was under your spell
you were the music
I should have been the lyrics
but my words were lost, evaporated, or maybe I never had them

You were everything that I didn’t dare wanting
I wanted you anyway
if the night belong to lovers, why did we never get one whole night together?
why didn’t I take it?

We had desire and hunger, but there was no disguise
I knew that my lust was love
but loving you meant facing my autistic self
the self without words

Quoting a song is silly
but my memories of you are music, rhythm, heartbeats, breathing
I had no words for what was happening then
I still don’t

“Take my hand as the sun descends
They can’t touch you now”

I had already taken the step out in the middle of nowhere
I was already falling
if we had held hands and fallen together
maybe we could also had landed together

I never found my words, but my demons got me
when the disease hit me
I thought it was a punishment for what I had wanted and almost asked for
for you, for authenticity, for being autistic

For a life without disguise

As Long As It’s Controversial to Treat Autistic Kids with Respect, We Need Autism Acceptance and Appreciation

April is coming up and that means a lot more attention on autism, since April 2 is World Autism Awareness Day. I was thinking about the difference between awareness and acceptance and decided to share an example of why we need acceptance. Warning: This post will include mentioning of harm and ABA.

 

If you are a parent to an autistic kid, try treating your autistic kid with basic respect and tell people about it. Simple things like don’t put your autistic kid(s) through sensory hell, help them communicate by giving them access to AAC, assume competence, protect them from harm and that sort of stuff. Nothing fancy, just basic parenting. Then, wait for the reactions. For me, doing this leads to two kinds of reactions:

1) Some people call me a horrible parent, because how will my kid ever have a chance to learn to appear more “normal” when I don’t engage in interventions with that aim?

2) Some people think it’s great and that I’m a great parent.

Reaction number one is awful for a number of reasons, the main one being that it shows how so many people think that interventions aiming at trying to make your kid appear less autistic is an acceptable and reasonable thing to do. That’s horrible because it means that a lot of kids are being put through ABA and similar interventions that have harmed so many autistic people. Reaction number two is quite nice, because it means that there are people who think that autistic children should be brought up with respect and basic protection from parents and other adults. However, no matter how happy reaction number two makes me, something is very troublesome with both these reactions – the fact that there is a total lack of a third kind of reaction:

3) So you’re a parent who commits to basic parenting. What’s special about that?

I’m thinking about this because I’m thinking about how to deal with April and all the Autism Awareness, because I think this is a great example of why we need Autism Acceptance and Appreciation, not Awareness. Ponder this:

 

It’s controversial to treat you autistic kid with respect.

It’s controversial to protect your autistic kid from harm and teach them that they are fine, just like they are.

It’s controversial to point out their humanity.

 

I can’t see how Autism Awareness ever will be a solution to this. People are aware that autism exists, but it isn’t stopping anybody from thinking that parenting autistic kids should be about harming them with normalizing interventions. Autism Awareness is obviously not preventing schools from denying kids an education and punishing them for being autistic either. Being aware of that autism exists doesn’t seem to be doing much for autistic people.

However, Autism Acceptance has a much better chance of focusing on accepting autistic people, just as we are. Autism Appreciation has a chance to give us the right to feel good about ourselves, as the autistic people we are. With more acceptance and appreciation, maybe one day it won’t be controversial to be respectful to autistic people of all ages anymore.

 


This post is based on this twitter thread.