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. 

 

A Right to Representation

This buzzfeed article on "Parenthood" and autism (the spark behind this post) uses really problematic language, like 'battling' autism. Most Autistic people I know, including myself, don't battle against it- we accept, embrace, and celebrate our neurotypes. Sometimes it is not a picnic, but no one's life is a picnic, and we don't have to like every aspect of our disability in order to embrace it and be proud.

It quotes no actually Autistic people and uses a quote from Autism Speaks, an organization that most Autistic people stand against for its propagation of myths such as Autistic people are broken, diseased, require normalization through methods such as ABA, and need a cure. It also uses person-first language (“with autism”) rather than identity-first language (“Autistic”).

I may be rehashing what people have said over and over again in numerous posts about representation in popular culture and about including our voices in articles and policies written about us. In no way am I, however, beating a dead horse. If I was beating a dead horse, there would be ideal representation, inclusion, and more listening to us (and even then, it might not be a dead horse because there would still be people trying to drag us back down).

There's the thing where they write articles on us without talking to us. People gladly assume we do not like being disabled, or that we cannot communicate about being disabled. Sometimes, perhaps, they do know, and just decide to talk for us anyway. We deserve to be included; we have thoughts. Traditional manners of communication may not work for us, but we still have opinions. We all have the right to be a self-advocate and be heard.


Then there are films by disabled people about disability, but people seem to jump for the sensationalized, dramatized, and either tragic or magically-cured stories. This is why, for instance, the Kansas City chapter of the Autistic Self Advocacy Network created a petition for Netflix to include films about disability and chronic illness by actually disabled and chronically ill creators. They compiled a list of films by disabled and/or chronically ill creators here.

We shouldn't have to make petitions about better representation, but we do, unfortunately. A lot of showrunners will deny their character is even Autistic because the character either “functions too well,” or they didn't mean to write the character that way, or they don't want the stigma of having an autistic character on the show. It's often a combination of them. Disability in general also doesn't fare so well. Disabled characters are often played by able-bodied actors, which leaves them able to 'stand up' or go off at the end of the show or film. Often we're depicted as either violent or savant. Often we get cured, get killed, or die in some fashion.

These depictions lend themselves to stigma in multiple ways. People can be afraid of us because we're not making eye contact or doing “strange” hand gestures or pacing. People expect us to be savants when most of us are not – giving the idea that we're only worth something if we have some miraculous skill someplace “despite” the disability. Cures imply we need them. Our deaths imply that death is a fate kinder than disability.

This is not just an issue that affects disability; it is intersectional and should be treated as such by all marginalized groups. We are one of a marginalized people and culture. Queer people, trans people, PoC, women, religious minorities and other groups also have a lot to work for in the field of representation. We should just make a collaborative series of films between disabled people, trans people, queer people, women, PoC, and as many religious minority groups as possible, and other groups too... because we all have a right to representation.

(also posted on Tumblr)

Eugenics and Disabled Parents' Rights

I am very concerned by Robyn Powell's words: "there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities."

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  - See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  - See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  - See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  - See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  - See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  - See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  - See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

I am going to block quote a post I wrote in July:

Robyn Powell, Attorney Advisor at the National Council on Disability, writes in “Can Parents Lose Custody Simply Because They Are Disabled?” that "removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent; where the parent has an intellectual disability, 40 percent to 80 percent." In addition, she writes, “parents who are deaf or blind report extremely high rates of child removal and loss of parental rights.”

We are no longer in the 1920s and 1930s, and the ingrained ableism still persists into the modern day. The statistics listed by Powell, and the countless cases in which children are removed from parents with disabilities, says among other things that:

• The disabled are not fit to bear children, nor raise them.
  
• People with disabilities should not have the same rights as non-disabled parents, because they are inherently less.
  
• Children need to be protected and raised away from people with disabilities.
  

Some people may protest, once the concept of eugenics is explained to them, that they’re not like that. They don’t support things like that. Yet by either failing to act in defense of, or supporting the removal of children from parents with disabilities, they are playing into the very legacy of eugenics.

Eugenics has been around too long. It needs to stop. Eugenic-based legal aspects are one of the policies that violate a human's rights so deeply that I find eugenicists unforgivable. I will fight eugenic policies til the day I die. And hopefully I can write things that people can keep fighting with after I’m gone.

Dear Issy

Dear Issy,

I want to tell you that the world isn't as harsh as it always seems, but I don't know how that would go over, since your mother did something so unbearably cruel and inexcusable to you. You are 14 and already you have suffered an unforgivable amount of abuse.

You are Autistic. In some people's minds, that is justification enough to make you a target. But it is not your fault. You are not the aggressor or abuser.

You are Autistic, and the Autistic community stands with you. By being Autistic, you have been accepted into our community. Remember that being Autistic is something that holds no shame, regardless of what people do to you. Preserve yourself at all costs, because you will never not be Autistic.

On a personal level, I hope you are recovering from what happened. I hope you can go someplace safe and heal and grow up. I hope we can hear you communicate your story. We will listen.

From,

Kit

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