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.)

An Open Letter to Journalists, Bloggers, and People: A Violent Narrative

Autistic people and other disabled people are victims both of violence and of the myth-perpetuating articles and posts that crop up every time one of us is killed or abused.

It’s about “not enough services.”

It’s that the disabled person was “violent.”

The disabled person was “burdensome.”

The disabled person was [tw: murder of Nancy Fitzmaurice] “suffering too much to live.”

I am always disturbed by the ways in which the abuse and murders are justified. I want to read articles without being unsurprised by the fact that we have, yet again, been called burdens. I want to be able to read articles and be surprised if that happens, to have it not be the norm.

The deaths of the disabled have never been about us. Even in death, we are rejected sympathy and mourning. We (activists) should not have to spend all our energy trying to convince people that our lives are, in fact, worth as much as the non-disabled lives and defending our dead and abused. We should be able to spend our energy on just making disabled lives better, on helping each other through life, regardless of whatever we do in the traditional, societal sense of productivity.

My friend wrote that:

“London McCabe was a wanted child.

If you are a blogger or journalist telling the story, know that much.  Get that right.  Even if no one in his biological family wanted this boy, the autistic community did.  We wanted to enjoy sharing life and our affection with him. We wanted to help him grow into the best and happiest person he could be and have a wonderful life…”

The stories do not focus on this.

The stories that say [tw: ableism] “Oregon autism death raises awareness of how to help overwhelmed families” are what happen. The stories say that being overwhelmed makes it more acceptable to kill disabled people; the stories say that if we don’t get more services for these families, the children are at risk. And they are, but not because they deserve it or are “burdensome,” but because people buy into the fact that our “burdensome” existence can in fact justify the abuse, deaths and murders.

With every contribution to the narrative that lack of services make it acceptable, with every post that forces us to defend the dead we are trying to mourn, with every excuse thrown out to try and downplay what would be a horrific act if done to a non-disabled person, [tw: list of murdered disabled people] the disability community is put more and more at risk.

We are asking for your acceptance. We have your awareness of how “burdensome” we must be. Change the narrative into one not of awareness, but of acceptance of us as people.

Helping Each Other Cope

Helping Each Other Cope

I feel like we also need to talk about what else we can do when this happens, when we lose Autistic or other disabled people to violence, besides just talking about it and writing about it and letting everyone know what happened and that it is not okay and we should all mourn the loss.

We should do all of those things, but as I’m seeing many, many posts about what happened, I’m seeing little about what we can do to help each other cope.

I had a bad day yesterday. I do not usually post about bad days publicly. But it was a bad day; I was upset about London McCabe, to the point of blanking out and having severe anxiety and alternating between anger and feeling extremely sad and distressed. Today was better, but I have some things to work through, and am taking necessary steps to help address it.

These events remind us of our own mortality, and of the fact that people think that it can be excusable, and of the fact that we lost someone at all who deserved to live regardless of what they could have done by traditional measures. I am pretty sure none of us actively forget about these things, but when it happens, the aftermath can bring those reminders to intense, almost or actually unbearable levels.

I will be trying to work on ways to help us cope in these aftermaths, perhaps a group area online, a large master post of resources, a list of people who are willing to talk to someone about their feelings. These ideas will have to be finessed and worked on, of course. Any other suggestions will be welcome. Comment here, message at k-pagination on Tumblr, or email me if

• you have suggestions for masterposts I can compile
• suggestions for a group forum that would be manageable and not out of control
• feel like you would be able to provide support for people via Skype or other forms of instant message, including Facebook.

—— (This would mean your information in these regards would  have to be available for those who ask. Potentially, I feel, I would have a list and then message the people on the list to see how they are feeling/if they are able to talk to someone, so the information wouldn’t just be everywhere on the internet.) ——

• You know of any open, free and accessible counseling places available physically or online that have actively demonstrated they are not ableist, sexist, racist, queerphobic, transphobic, bigoted, etc. and that they would not undermine the purpose/identity of the person seeking assistance and counseling.

You can also email me at silverbrook.aka.silva@gmail.com or message me at https://www.facebook.com/pages/Paginated-Thoughts/742852935779780

The Only Victim

The Only Victim (originally posted on Tumblr)

When I saw the news trending on Facebook, my heart sank. Another dead - murdered - child by their parent(s). My first thought upon seeing the news of another murdered child was “were they disabled?”

I read on. London McCabe was Autistic; and my worst fears confirmed: another person to mourn on March 1st, 2015, at our annual Day of Mourning.

He is the only victim here, even as I wait for people to proclaim his mother a martyr mom. It is awful to have a dead child in any situation, but the difference is that when the child was not disabled, everyone thinks it’s awful. When the child, like London, was disabled, many rush to make excuses as to why it happened, when there are none.

...

London McCabe, 6 years old, Autistic, thrown off a bridge to drown in Oregon. This is why we don’t need your awareness. This is why when you talk about awareness, we cringe. This is how the awareness works: everyone “knows” what autism is, everyone “knows” it’s some scary thing that makes parents’ life “battle-fatigued” and our murder “justified.”

This is why we need you to listen. This is why we need your acceptance.

Mourning and Advocating for Autistic Murder Victim London McCabe

Mourning and Advocating for Autistic Murder Victim London McCabe



--Shannon des Roches Rosa at Squidalicious

The Murphy Bill Has Gained Support of NAMI-NYS

 This is not a good thing, by the way. 

[TW/CW: Ableism, shooting, institutionalization]

From MindFreedom International on Facebook:

"On Friday evening, November 14 at 6:00 p.m., the NAMI-NYS membership will “stand united” in presenting the 2014 NAMI-NYS Legislative Champion Award to Congressman Tim Murphy, for authoring H.R. 3717 called, The Helping Families in Mental Health Crisis Act."

I will post a transcription of the Autistic Self Advocacy's document on the Murphy Bill, along with an image of the document below, and I urge to you write/call to your Congresspeople against this, and spread the word.

"Why Your Member of Congress Should Oppose HR. 3717 
After the Sandy Hook Elementary shooting. Rep. Tim Murphy (R-PA) introduced HR. 5717, legislation designed to take advantage of media associations inaccurately linking mental health and violent crime to rollback civil rights protections of people with psychiatric disabilities. It is intended to completely change the current state of mental health services to make it easier to forcibly treat people with psychiatric disabilities, expand institutionalization and reduce privacy rights and legal protections. Here are some talking points you can use when speaking with your congressional offices about why they should oppose HR. 3717:

Privacy
The bill would reduce privacy protections for both people with mental illnesses and people with intellectual and developmental disabilities. The bill allows disclosure of confidential psychological and psychiatric information to family and caregivers in additional circumstances to those already defined in current privacy laws. Right now, doctors and therapists can give confidential health and mental health information to family and caregivers in emergency situations or if they have permission from the person getting treatment. The bill would allow doctors and therapists to give confidential health and mental health information to family and caregivers even without permission and without emergency circumstances.

The bill also allows for greater influence from family and caregivers, including forcing involuntary medication and institutionalization.

Institutionalization
The bill will provide federal government funding for more institutionalization. This will mean less money is available for other community-based services. The bill will also cut the budget for the Substance Abuse and Mental Health Services Administration’s community integration projects to a little over a third of what it is now.

The bill would also require all states to create programs that allow judges to order people to take psychiatric medications that they do not want to take. The best way to help people get mental health treatment is to make it available and give people support, not to get the courts involved.

Legal Protections
The bill takes away many legal protections available to people with mental illnesses through the Protection and Advocacy program, which is the largest and most accessible program for legal services for people with disabilities. Over 80% of the funds for Protection and Advocacy for people with psychiatric disabilities would be taken away.

Economics
The bill establishes an unnecessary assistant secretary position to oversee the Substance Abuse and Mental Health Services Administration which would be financially supported by a portion of the budget allocated to supports for people with mental illnesses.”

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