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The world obliges me to do something, so I create.
 Society wants me to belong, so I observe.
People force me to react, so I rebel.
They want me to stay still, so I paint.
Life requires me to live, but I am dying. . .

I'm not your next charity project

2/4/2016

20 Comments

 
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2nd April
Autism (Awareness) Acceptance day.
In this post I'm talking about autistic people, but most things can be applied to any neurodivergent person, also will be mentioning and briefly discussing ableism, objectifying of disabled people and inspiration porn. 

Today is the day when almost everyone feels the urge to "light it up blue", share some so called inspirational stories showing that autistic people - surprise - are human beings too, show their sympathy to the families "affected" by autism or even better talk about how together we can "beat autism".

All this just makes me want to throw up - meaning today I will avoid social media and won't login into facebook, twitter or any other social media to avoid all the horrible, even if good intentioned, messages these posts are sending. 

I already wrote many times about organisations like autism speaks and the only message they are communicating is that being autistic is the biggest burden or having an autistic child is worse than to loose one.
Let me clear it again - groups like autism speaks do not speak neither for me, neither for any other autistic person I know. The only thing they do is talk over actually autistics, silence us and never listen when we raise our concerns. 

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There is no point even trying to engage with them anymore, as well there is no point engaging with these people who share anti-vaccine bullshit believing vaccines cause autism (irony: what a tragedy!) or these people who feel sorry for the families with autistic children...There is SO much info out there why ideas like these are harmful and how they affect real people in real life, just do your research. I'll put it shorty here anyway: it reinforces the idea that autism is a tragedy, that the world would be so much better place without autistic people in it and contributes to the already existing stigma. It hurts me. It hurts other autistic people. Basically it makes my life more difficult and makes me feel like I have to keep apologising for even existing, taking up space and many other things. You know, everyone should feel sorry for me and I should have never existed in the first place. If you care even a little bit - stop doing it. right. now. 
​

Okay, this time I actually wanted to write about so called inspiration porn as it is another thing that harms actually autistics every fucking day, and as most people seem to care about "beating autism", "finding a magical cure" and just in general "helping autistic people", maybe it's time for them to listen and actually do (or rather stop doing something)?

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The term inspiration porn describes the fact that disabled people are seen as inspirational because they are disabled and/or are here to inspire non disabled people to be better human beings. I can think of a few most common examples:
*Neurotypical person is being friendly and not that shitty to an autistic person. This is seen as SO inspiring!! like wow! this person is basically a hero because they don't hurt, insult or completely ignore an autistic person. Autistic person is used to show that the other person is kind hearted & good, taking away autonomy from an autistic person - nevermind in the end of the day, we are here to please non-disabled people and show how nice they can be, right??
*Autistic person does something random, something most people are capable of, like goes to the school, rides the bike, goes to the shop, etc. etc. and it is so inspiring because autistic people are apparently not capably of literally anything. It is also used to stigmatise and put other people, especially children down (e.g. "look they are autistic and they are able to ride a bike, when will you learn??" or "even that autistic child got an A from an essay, what is your excuse now??")
.
*Autistic person does something extraordinary, something 99% of people wouldn't be able to do, like discovers a new constellation, goes to space, invents new type of machine, paints a masterpiece, etc. and it is so fucking inspiring, just not because of the actual action, but because the person is disabled.
Let's face it - we exist for our own reasons and not to please, inspire or what-ever-other-fuck to do with non-disabled people. This sort of objectification is really really fucked up. ​​It takes away our autonomy completely leaving us just as objects to please other people needs. We are already enough objectified, and if our needs, aspirations and ideas do not fit into society's concept of us - we are completely ignored...
I want to believe that people sharing these stories are just ignorant and think they are doing good. 

If you are one of these people for goodness sake - STOP! just stop doing it. There is nothing inspiring or nice in participating in these oppressive activities. Autistic people are not your emotional merchandises!! These superficial praises are extremely patronising and nothing else just a tool of oppression silencing us even more, just this time in a less visible way. 
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(By the way, I'm not saying you shouldn't find disabled people and their work inspiring. But if your inspiration comes from the fact that we are disabled by the society and you are not, that we manage to do things you are able to do too, that we manage to do things you are not able to do and the fact we are disabled surprises you or you feel that having a disabled person as a friend will make you more progressive, better person - you are the part of the problem. If you want to be a better ally, unlearn your ableism and objectification - go for it. Don't expect your autistic friends to educate you, do your own research. 
By the way I'm an artist and I actually want people to be inspired by my ideas and artworks, but because they really like them and not just because I'm disabled by this society.

Copyright © Lex Kartanė
All rights reserved.
​
All works are copyrighted and not to be used without the permission of the author.
20 Comments
Danny Jasiczek
2/4/2016 10:59:39 am

Nicely said. Thanks.

Reply
monica
2/4/2016 11:51:14 am

i find this bashing coming from acceptance side not helpful for our children. they need love and understanding not hate, they are special people in this world just like you and me.

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Amber N
2/4/2016 08:28:28 pm

I find this comment not helpful for autistics. REMEMBER: all autistic adults were once autistic children. Now we are able to say what we think and what we want, as a parent (who I presume wants the best for their child) you should shut up and listen.

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Emma
2/4/2016 11:53:59 am

AMAZING post! thank you for putting it all so clearly, just a refreshment after all the media going about curing, beating, fighting autism.
thank you. thank you for being YOU. thank you for speaking up.

Reply
Jeniffer
2/4/2016 04:00:21 pm

Some very interesting perspective here.
It's not that easy area to know the right thing to do and how to promote certain gifts of autistics. My son Tim will never do anything that 99 per cent of the population could have never achieved. I know that for a fact, but he still can do things that are pretty impressive because of his disabilities. He loves to be the center of attention. He really loves to dance on stage or in front of an audience and hear us praise him. He doesn't understands that he could have an audience online too, so there is no point in creating a video to make him feel like he is famous. Still I would love to make a video of my son showing what he can do to everyone around. I'd really like other people to see what he can do and be inspired by it, he faces so many challenges, so escaping in dancing is incredible. I'd like to inspire parents to put their special needs kids in dancing and acting classes too. I think it will inspire parents and their kids to do similar things and be proud of who they are. not a labels, but little humans
namaste!

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Amber N
2/4/2016 08:46:41 pm

Some very interesting perspective here too.
So, you've just read about inspiration porn and how it harms autistics, but still want to make a video of your son to inspire people.
Makes total sense.

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n
2/4/2016 05:52:26 pm

your types are the reason autism communities are worthless when it comes to seeking help. stop blaming other people.

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Amber N
2/4/2016 08:26:38 pm

your types are the reason autistic people are not listened to.

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Ann
2/4/2016 05:56:16 pm

brilliant and very accurate article! will share with my friends.

if one doesn't include the opinions of Autistic people in their #AutismAwarenessDay then wtf???!!!

p.s. you are very beautiful.

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Julie
2/4/2016 06:25:23 pm

I completely understand your feelings as I have a child with autism myself, but people dont objectify our children, they do this to raise and awareness and to celebrate their differences. children with autism are not able to speak for themselves, we as parents have to be their voice.
today holds a positive meaning for many of us, i'm very sorry not for you, but try to see the bright side of it and celebrate the difference.

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Amber N
2/4/2016 08:31:02 pm

I completely understand your feelings and confusion, but today DOES NOT hold positive meaning for autistics. We don't need awareness, we need acceptance. We need people like yourself to shut up for once and listen when we talk. Autistic children grow up and people like you don't listen to us even then. I'm very sorry for you, but try to learn to listen instead of talking over us.

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Michele Holiday
2/4/2016 08:15:24 pm

What is wrong with bringing autism to the forefront and talking about it? As for the government involvement, everyone wants free or low cost therapy and intervention as soon as possible and we ask the government to fund some of this. Am I wrong? Or maybe some of those bashing autism awareness day/month should dig deep in their pockets and offer to pay for therapy for those families that need it and can't afford it! Do you know how hard is to have a child on the spectrum?

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Amber N
2/4/2016 08:36:48 pm

We, actually autistics, do not want intervention.
Me, same as the author of this article are actually autistics, meaning we were autistic children once, so yes, we know very well how hard is to be autistic child in the society that keeps us reminding it. parents like you are not helping. Do you know how hard is to have a parent who keeps wanting to erase you and changing with someone else (not autistic, not broken)?

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Casey
2/4/2016 08:17:21 pm

My child is not your political pawn. I for one will be blue for my little man. It's about raising awareness and being proud of our little stars

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Amber N
2/4/2016 08:33:19 pm

Autistics are not your commodities don't push your agenda on us. for one try to listen when we talk.

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Amber N
2/4/2016 08:43:56 pm

what the hell is wrong with people? why come here and show how much you don't care about actually autistics if they message does not fit ur agenda?

milda, I'm deeply sorry some you have to read these comments.
love your article - please keep writing, keep sharing your thoughts, keep doing what you do. this is so damn important! I will write you an email, so overhelmed by your article atm, always sensed something was wrong with these stories using us as "tokens" and whoohoo you put things in perspective!

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Rosa link
2/4/2016 09:49:39 pm

I was told that I have traits consistent with autism by a psychologist, but because my mother, who disowned me, was not present as a family historian, it could not be said definitively that I have autism. It couldn't be ruled out either. That being said, I do identify with much that was stated in this article. I do not understand why neurotypicals often bully and ostracize those with difficulty socializing. You would think, by observance only, that the neurotypicals are the ones who cannot socialize. And I do agree that there seems to generally be a disconnect between those who are lighting it up blue and the autistics they serve.
If the truth were to be told, this is often the case between groups or organizations and the people they claim to represent. Nobody wants to hear from you, they want to hear from the experts representing you. Strange, I know. The one thing that confuses me here a little bit is how raw the anger is, both in the article and in the comment section. I think there are likely so many neurotypicals who are trying and don't deserve quite the degree of vitriol found here. Just my observation. Rock on, friend and keep being you.

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Glee
2/4/2016 11:01:27 pm

YES!!!!

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Alex
2/4/2016 11:12:50 pm

Maybe high functioning you dont need a cure, but for a family who has a child who cannot communicate a cure is something that would make a greatly impact. Everyone who feels a need to complain saying that it's objectifying is plainly stupid. just because you have autism too (clearly highly functioning) doesn't mean that you can ruin it for families who suffer greatly because of autism. if you don't want cure great, but many children need cure to be able to love their parents and talk to us.

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Jill
2/4/2016 11:16:07 pm

great point, but Please use people first language in your articles! They are people with autism, not autistic people! Autism does not define our children!

Reply



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    AIWS

    AIWS is a strange invention in this planet - a machine with a brush, pen and camera in its hands. It just observes and pictures the sad and cruel reality of everyday life. If You do not get it, do not worry too much, it just means that You are average. But of course You are more than welcome to read, think about and even share Your very important thoughts. Just remember: the majority of humanity does not interest AIWS at all, so please, do not feel offended. It's not You, just Your mediocrity.

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