The social model and when society refuses to admit its part

[Also on Tumblr]

I’m going to reiterate the social model and what this blog advocates for and what I advocate for. It has been said before. I will say it again. For the sake of this post, “society” will stand as the general conception  non-disabled people have of disability – or what they don’t think about in terms of disability.

In a society which disables us and refuses to admit they do so, it is not that we are not fighting hard enough for our rights, for our equity, that our demands are not strong enough – it is that society views disability itself as a malfunction of the human body or brain. It is a strong cultural bias and line of thought that has been around since there were cultures, and, though accentuated and perpetuated greatly by capitalism, is not solely a byproduct of capitalism. If capitalism ceased to exist, ableism would still exist. And there is no perfect world in which we can trust a government and economic system to fully benefit us.

In a society that would rather fix the individual who is not broken (i.e. all the money spent researching cures for autism and prenatal testing research) than spend a bit of extra effort to make things accessible and provide supports (like using alternative communication devices to spread the person’s word, ramps in the front of buildings rather than relegating wheelchair users to the back), we must continue to exist as an act of defiance.

Society does not consider the extra effort the person they are disabling has to put in to get someplace, do something, and perhaps, they are not able to get to where they are going from the failure to provide any meaningful supports or make it accessible, but protests the moment any disabled person brings it up (i.e. academic conferences sometimes both physically lacking accessibility for anyone with a mobility-based physical disability, and language barriers – this can be the classroom, too. Academic jargon is essentially shutting many disabled people out of conversations).

Society protests about the effort they would have to put in.

This is the social model of disability: we can have impairments or different ways of doing things, and society disables us by not allowing us the tools to complete tasks (and by not allowing us the right to human dignity at times).

Society has a lot to work for. 

(While we fight for those rights, please keep in mind that not everyone will be immediately receptive to the idea that they are part of a cultural bias. Please work with them to the extent you can.)

Response to Tumblr Ask on 9-12-14

http://k-pagination.tumblr.com/post/102451828204/do-you-oppose-research-for-cure-for-autism-or-do

Nov 12 2014

Do you oppose research for cure for autism? Or do you prefer to see kids being dysfunctional and unable to communicate?

— Asked by Anonymous

What is, exactly, your idea of functional? “Functioning” is a very, very arbitrary word that has been used to dehumanize us (and other disabled people) since its creation. Is this a quality of life judgment, where you’re going to tell us how much we suffer and that our lives must not be worth living if we’re Autistic, so cure us?

What is, exactly, your idea of communication? Because verbal speech is too emphasized in this society. It’s not the only way. Behavior is communication. I know people who have entire conversations without talking or typing.

Do you support the idea of curing children who haven’t had a chance to even figure out what their neurology even is, who may not have had a chance to escape the toxicity of the world around them that tells them their neurology is wrong to the point where they don’t know how to think otherwise?

Do you oppose the voices of Autistic people (those of us who talk with spoken words, those of us who don’t, the ones you say who wouldn’t be able to communicate, but are communicating right in front of you, via typing, text to speech, AAC, and behavior)?

Your ask is incredibly dehumanizing. Real question: Do you oppose us being humanized?

(Short answer: Yes, I oppose cure research.)

Autistic Pride and What you Need to Know

[TW: Includes links to the abuse of Autistic people and violence against them, as well as "quiet hands" and seclusion.]
 
Autistics Speaking

Our methods of communication may not be what you are accustomed to. Sometimes we use assistive technology or just flapping intermingled with words to get the point across. But we all have things to say. Listen.

Pride

We can be proud and often are. We are proud of our neurodivergent brains. And have you ever seen a room of Autistic people flapplauding happily? Have you ever seen the joy we feel when stimming, which isn't just a negative response? Or just the pride in our ways of thinking and doing.

Being Autistic can be hard. Being Autistic can lead to more challenges in the world, but so many of those are based in a society which values spoken/verbal communication and an education system which views it as a compilation of deficits.

More importantly, autism is not something you can change about a person, or something you can cure; it is part of our neurology, hardwired into our brains, so why not be proud?

Also, have you ever seen someone's face light up when they get on their special subject? The way they communicate and move and they are the expert and they want to share? It's beautiful. I can tell you everything about cats, I can explain to you my dragons on Flight Rising, or describe every aspect of eugenic history: I can recite eugenics books in my sleep (almost), name top eugenicists, describe the way they described people, tell you what state passed the first sterilization law and when, who first came up with eugenics in the U.K. and that he was a cousin of Charles Darwin, inform you of how it made its way to Nazi Germany and that American eugenicist Harry Laughlin was later honored by Heidelberg University and he accepted it with pride.

Nightmares: Open Your Eyes to the Things that Happen

People have nightmares all the time. Being locked up in rooms, not knowing how to get out or when they ever will. Violent nightmares where they're at the hands of someone who wants to do them harm. A lot of us live these nightmares in seclusion rooms. We get punished for flapping or making a noise or dropping a pencil or moving in the wrong way or if we argue with someone we get put in a room, locked in. These things happen where we're supposed to be safe, places like schools, places where we're supposed to be able to get an education.

Some of us are afraid, not so much from random strangers on the street but from the people who claim to love us. Some of us are the victims of violence and abuse that's either called self-defense or therapy, like Issy Stapleton, whose mother called her violent and tried to kill her. Some of us don't make it out alive, like Alex Spourdalakis, drugged and stabbed to death. These things happen when we're supposed to be safe, places like our homes, places where we're supposed to be loved and supported.

Most people can wake up from nightmares, but some of us can't. We hold a vigil every year for the victims of violence. We unite to try and put an end to these things.

A Guidebook for the Non-Autistic: Things You Need to Recognize

• Presumption of competence, believing in our ability to learn and understand, will bring us farther than any abusive therapies.
• We are marginalized, but we're still here and we will not be quiet; listen to us about things that concern us.
• Behavior is communication; do not assume behaviors have no reasons behind them, and do your best to understand.
• The same goes for watching us in public; we may look weird and different to you, but we have reasons and should not be shunned.
• Representation in the media is not accurate.
• We can provide valuable information on our disability and autism, and you should listen.
• The value of our lives are not less regardless of the level of support we need. We have the same rights to life, love, education, jobs, and living conditions as anyone else.
• Listen.

~
Kit Mead
Autistics Speaking Day 2014

Maybe, in Poetry... Reflections on My Autistic Pride Poetry

TW: Abuse, murder, electric shock mention, links to things on "quiet hands"

I successfully read my poems, "Writing out Infinity: Autistic Pride" and (tw: ableism, violence, murder mentions) "Power Structures" at the 100 Thousand Poets for Change event on Saturday, September 27.

 I received an email later telling me that my poems had touched their heart. It made the fear of standing up in front of people with that microphone, staring at the papers in my hands, trying to put conviction in my voice because I am the authority standing up there on the stage and I know being Autistic is not shameful and I know all the things that have been done to us, worth it. 

I wasn't sure they would understand what I meant by neurodiversity or by infinity, or or the description of stims. I wasn't sure people would understand what I meant by people being afraid to move their hands, or people being afraid to be Autistic in a world that sympathizes with our abusers and murderers, and the innumerable counts of abuse done to us through electric shock and aversive therapies and forced normalization and telling people they can't move their hands and they cut our vocal cords because we scream too much. 

Maybe, in poetry, the graphic or specific details don't need to always be there. Maybe, in poetry, the conviction with which you say it will tell them it's true, will tell them they should look into it, will tell them to presume competence and believe me and tell them that we are not suffering burdens 

--and that we can love ourselves just as much as any non-disabled person. 

 

We had to pick a topic for our Speech class

and we have to present a two minute thing on the topic we have chosen. Of course I picked this:

Topic

A History of Autistic Self-Advocacy to Now

• Context: Domination of Parent-Based Advocacy and its roots
• Roughly when did the self-advocacy movement begin after years of being dominated by parent-based advocacy?
• What struggles did they face?
• What struggles do we still face?
• When did the movement, along with the neurodiversity movement, “come of age?”
• How has it evolved into its modern form?
• The Modern Platforms

Reasons for selecting topic

I am an Autistic self-advocate and activist. I believe in promoting the acceptance of disability, abstaining from the attempted normalization “treatments” forced upon many of us, including us on decisions that involve us (and not just as token representation), presuming competence of disabled people, and supporting fellow disabled people.

Why it should matter to everyone

The rights of Autistics and of the disabled in general are harder to attain because of ingrained discrimination in society. People fail to include us in policy-making, advocacy, and in our own lives. Organizations like Autism Speaks would try to speak for us and try to force us into normalization or cure when the majority of us oppose such treatments and cure research. We are human; we have autonomy. As people, and as the marginalized, our rights are civil rights. As the old adage of the disability rights movement goes, Nothing About us Without Us!


My sources will include

• Books written by early researchers of autism, such as Bruno Bettelheim (to provide context for the birth of the parent-based advocacy movement).
• Loud Hands: Autistic People, Speaking edited by Julia Bascom: a recent anthology published in 2012 by Autistic people on their experiences, advocacy work, the discrimination against Autistic and other disabled people, and our history.
• Posts written by parent-based advocates and the website “charity” Autism Speaks who tend to oppose the idea of Autistic self-autonomy and try to force their children into normalization.
• Web archives from prominent first self-advocates such as Jim Sinclair (author of "Don't Mourn for Us" and "Why I do not like person-first language," and founder of Autism Network International) and Mel Baggs, especially in the 1990s
• Current posts from Autistic self-advocates around the web, including myself
• The Autistic Self Advocacy Network's webpage and their updates (ASAN is a self-advocacy based nonprofit based out of Washington, D.C., run by Autistics for Autistics)

• Notes I took during my Autism Campus Inclusion program in Washington D.C., sponsored by ASAN, which took fifteen Autistic college students to D.C. with various speakers and sessions to learn about history, advocacy, and action, including people such as the Executive Director for The National Council on Disability.
  

 ... is that enough