the facts I have, and what I still don’t know: notes on autistic trans selfhood

I am 1 hour late to Transgender Day of Remembrance, if we are going by Eastern Time.

. . .

I wanted to write something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even if just a little, in a time when we need it the most. I wanted to write something about the times we’re in when trans people are considering – or are – de-transitioning. I wanted to write about how we should not be passing around suicide hotlines after an election and how Trans Lifeline is overloaded with calls.

I wanted to write about the people I have never met and maybe never will, because they are dead (in which case definitely never will), or because I don’t know how to un-silo my identities sometimes, or convince people to take my disabled identity along with me because you cannot separate me from my disability and I cannot stop being disabled just because I enter your spaces and everything is overwhelmingly bright and loud but I cannot figure how to ask everyone to tone it down some because I am afraid of accidentally trying to silence you.

(I only went to my first pride in 2015 because I was terrified of the noise, and wore my noise-cancelling headphones with music playing and carried a sign that said “Autistic and LGBTQ+ Pride” and flapped a lot to self-regulate and tried to avoid the crowds and tried to stick with the person I was with and still had to leave before too long).

. . .

I wanted to write about how much it hurts to know that all your communities have a suicide problem and all your communities have members get murdered and you feel like you have to mourn both separately even though the following facts are true:

The autistic community has a higher than average chance of being trans, non-binary, or gender non-conforming and autistic adults without intellectual disabilities are nine times more likely to die by suicide than their non-autistic peers. There is a dedicated site to those we have lost to filicide. The trans community reports a 41% suicide attempt rate, as opposed to 4.6% of the general population, and 2016 breaks the record for most trans people murdered in a year.

What happens when you’re trans and autistic?

I mourn the deaths.

. . .

I do not know the answers to how I will act to be not just an autistic activist with mental health disabilities, but also a trans activist who fights more deaths in the trans community. I want to be an activist who is aware of the intersections that trans people have – trans people of color, autistic trans people, otherwise disabled trans people, and so many other intersections – and tries to work in the space I have and not overtake others’ voices.

But I am still working out my non-binary and trans identity. I am still trying to figure out how to create spaces that work for both autistic trans people like me and non-autistic trans people. I am still working on figuring out how to be a part of more than one community.

. . .

I wanted to write about something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even just a little, in a time we need it the most.

I wrote what I could instead.

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Society’s Comments on the Murders of Disabled People

David Perry noted recently that a family of swans being run over garnered more outrage than the murder of yet another disabled person (Theron Leonard). And even though the media coverage in this incident was plain facts, no supposition of how the disabled person deserved to die somehow – unlike previous incidents – the comments that cropped up proved yet again that we live in an ableist society. I will not repeat the comments here – you can find them yourself if you want to read them at the article link, but they involved the usual narratives of the murder being understandable.

Even when journalism is mostly responsible (apart from the “suffered from cerebral palsy” bit, which is definitely not ideal), the comments betray an ableist society. The comments show the thin veneer of tolerance, if there is even a veneer, held for disabled people. It’s not always as blatant as the time someone said Issy Stapleton deserved it and needed to be institutionalized (a comment on a Daily Beast article), or when the commenter indicates that the parent must have just cracked under the strain. But a lot of times it is. And people still rush to defend it. Thankfully, the comments on the article about Theron Leonard had people who came in to argue against the supposition that filicide of a disabled person is understandable.

To the people rushing in, to the people who withstand the torrent of ableism and comment on these articles to refute these ableist claims – I thank you. To the people rushing to defend blatantly ableist things – the people still rushing to defend the murders of disabled people, claiming they understand the situation far more than any of the disability advocates and activists speaking on the situation – I do hold you responsible, along with those who routinely expose intimate details about their children and call their children violent and burdensome, for allowing the list of people we mourn at Days of Mourning to get longer every year.

Things seem to be getting a little better – the murderers are receiving longer sentences. After being rebuked by disability activists, one news station removed the reference to a mercy killing (though it was abhorrent they would use such language to begin with). And we have many allies who speak out against filicide, and those who attend our Days of Mourning who aren’t disabled. To those people: you will help us create a future where the list of the dead stops growing so fast. You are doing the right thing.

It should be a low bar, but it seems hard for people to step back and realize that disabled people are real people, with real lives and real value. It is apparently hard especially for non-disabled parents of people with disabilities to step back and think about the lives lost due to injustice and murder, and not because the disability made it justifiable. As I and others have pointed out – the murdered disabled people were wanted. The disability community wanted them, we wanted to teach them how to build pride and navigate a world not built for us, we wanted to teach them the value of community and both the joys and hardships of disability.

There seems to be a kneejerk reaction to defend parents in solidarity, to defend the murderer. Systems are not set up to support people with disabilities, but murder with a get out of jail free or with light punishment card is unacceptable. Think about how much we wanted those people to learn about disability community. Think about their lives and value. If someone cannot care for their charge, they should be responsible and seek alternate placements for the person. Murder is wrong. I will say it over and over again. Murder is wrong.

Care about the swans all you want, because even though swans have historically held nothing but the urge to bite me, they shouldn’t have died. But I want you to care about us, too – parenting in general is hard, but disability is no excuse for murder. And even when journalism holds itself to mostly responsible standards, which it often does not, comments betray society’s feelings.

And yes, we notice. We are are so much more than shells of people. We are so much more. The ones you especially don’t think notice also notice. We all can tell when the people around us think we’re better off dead or find us burdens – it shows in your words and in your actions toward us. What do you think that does? Here’s one example. If you care, wouldn’t you want us to be happier (and alive; when we are dead, we are dead, lost from this world)?

Issy Stapleton’s last words before going into a three-day coma were “I love you, Mommy.” We love, and we should be able to trust our parents and caregivers. We are so much more than shells of people. We are so much more. Wouldn’t you want us to live the fullest lives we can, alive? Wouldn’t you want us to be happy, alive?

. . .

Sampling of Articles and Resources on Filicide in the Disability Community

 

Actions, Articles, and Statements on Sagamihara, Japan

This is a compilation of actions to take, such as vigil-attending, articles, and statements on the murder of 19 disabled residents and injury of 26 more at an institution for people with intellectual and developmental disabilities (Tsukui Yamayuri En) in Sagamihara, Kanagawa, Japan. We do not know their names because there is a refusal to release them. The reasoning behind this is that families do not want to have them named as people with disabilities.

Filed under eugenics as well as ableism and disability because killer held eugenics ideals.

Last updated August 19, 2016.

VIGILS FOR SAGAMIHARA

None upcoming that I have located

ARTICLES I HAVE LOCATED ON SAGAMIHARA BY DISABILITY RIGHTS ADVOCATES

BEGIN TRANSCRIPTION.

“Japan National Assembly of Disabled People’s International (DPI-Japan)

office@dpi-japan.org

URL: http://www.dpi-japan.org

Statement to Protest Knife Killing of People with Disabilities Sagamihara, JAPAN

Midori Hirano

Chairperson, DPI-JAPAN

We, DPI-JAPAN, work with cross-disability populations to advocate for society where people with and without disabilities can live equally. DPI-JAPAN is the organization of people with disabilities and has 91 affiliates across Japan.

The tragedy of the knife killing occurred on July 26, 2016, at institution for persons with disabilities in Sagamihara city. We express our deepest condolences to the victims who lost their lives and sympathy to those who were injured.

Many details were unclear till further investigation. However, some media reported that the suspect entered the institution during the midnight and attacked. There was also a report that the suspect was saying that “It is better OFF without people with disabilities” to the Kanagawa Police investigation. If this was true, the act is purely caused by the eugenics that questions the existence of persons with disabilities and other minority groups. We, DPI-JAPAN, reaffirm our commitment to fight against eugenics with great anger and grief.

During recent years, there are increased incidents of hate crime and hate speech against persons with disabilities and other minority groups. This particular incident should not be overlooked. Now, more than ever, the need to create a society which does not allow hate crime or hate speech.

Since the ratification of the Convention on the Rights of Persons with Disabilities in 2014 and the effectuation of the Act for Eliminating Discrimination Against Persons with Disabilities in April this year, there have been many efforts put in to create inclusive society that does not divide people whether having disability or not.

We will commit ourselves without falter to ensuring the life and dignity of persons with disabilities are protected and to be able to exercise their rights.

Lastly, there were some media reporting of history of hospitalization of the suspect. However, we request media to refrain from reporting the unconfirmed facts which only increase prejudice and prejudgment.”

END TRANSCRIPTION.

I Fear for My Fellow Autistic People: On Media Misrepresentation

Recently, a piece appeared in a major news outlet. The main premise of the article described a mother’s fear that her autistic teenage son will kill her, her other son’s wish that his brother would die, and the lack of respite services where she lives. It was a very personal piece. This article more than irks me; it plays into very dangerous stereotypes. It plays into the idea that autistic people are inherently dangerous, that we are burdens. And dangerous stereotypes in the media, whether in fiction or opinion pieces or livetweeting an autistic person’s meltdowns have real life consequences.  

First, let’s talk about autism and violence.

Autistic people have many dangerous stereotypes about violence, particularly mass shootings (the idea that we are likely to be perpetrators) surrounding us; the mass shooting one is false. However, when individually aggressive, we usually have an outside stressor. When I was in school before college, it was people touching me; the overwhelming sensory overload; the frustration of not being able to put words to all my feelings; and the constant wear and tear of terrifying social interactions and bullying. I was flailing hands, panic attacks and tears, bolting down the hall, and slapping anyone who touched me. Fortunately for me, I was not considered intimidating and dangerous for a variety of reasons, just in need of more support. 

But continual aggression is usually a sign that something is very stressful. This is a checklist that can help identify those sources. Tumblr user Lysikan, a non-speaking autistic person, has created a set of posts that can help reduce meltdowns – one of the primary times an autistic person can become aggressive while overloaded and panicked.

Next, let’s talk about her other son’s hatred and death wish for his brother, and media narratives surrounding autism, disability, and our murders.

And also what I fear almost more than anything, the murder of another autistic or disabled person by their caregivers or family members. Let’s talk about filicide. Let’s talk about how the same story occurs over and over again. A disabled person is murdered by a caregiver or family member. The media picks up the story. Sometimes they report on it as a mercy killing. They almost always talk about the burden of caring for a disabled person. The victim is a throwaway in their own story. Many people have already explained this in countless blog posts. It should be beating a dead horse, but it’s really not. Many people act on their wishes. I have heard of far less, if any, killings of caregivers by autistic people than killings of autistic people by caregivers. This is why I fear the death of autistic people at the hands of caregivers and family members far, far more.  

Finally, let’s talk about responsible journalism, disabled people’s right to privacy – and real life consequences.

I will absolutely agree that there is a need for more respite services. I will absolutely agree that more services need to happen! But there are frankly better ways to deal with this than publicly posting in a major news outlet the intimate details of an autistic person’s personal life. There are better ways to deal with this than to promote dangerous stigma. There are private actions that could be taken that would protect the autistic person’s confidentiality and not promote stigma.

One is to actively work to reduce the autistic person’s meltdowns using the strategies linked above. Another, if this resource is accessible, is to see a professional about your feelings of stress or anxiety. And – these kinds of stories are not isolated. They are patterns; “autism parents” routinely post in and on public spaces and blogs intimate details of their child’s life and how miserable their child makes them.

This is extremely dangerous for autistic people.  First, it effectively outs them to the world, and could make it impossible for them to do things without people realizing it and judging. Second, it directly leads to real life consequences. Elizabeth Bartmess notes in “Autistic Representation and Real Life Consequences” that

This is shown in several similar ways in fiction and in real life. Autistic people are represented as burdens on others, particularly their families, when they embarrass neurotypical siblings or have greater support needs. This is more common for characters written to “low-functioning” stereotypes…. In real life, we are presented as burdens as well… This has consequences. At the extreme end, media or other parents justify parents murdering autistic children. Abuse is common, by friends, people on the street, caregivers, and others such as paid service providers, foster care providers, and transportation providers. In general, people with developmental disabilities have drastically higher rates of abuse; abusers may target autistic individuals…

The Pacific Alliance on Disability Self Advocacy (PADSA) resource guide on media misrepresentation states, “Even when people don’t directly cite these stories, they seep into culture. People form their opinions and take their actions based on prejudices.”

Both the autistic teenager’s mother and this major news outlet had a responsibility to autistic people to report in a way that does not increase stigma and cause more consequences for autistic people. They chose the stigmatizing, stereotyped, and dangerous way of talking about autism. I am afraid of these stories and will continue to speak out against them. I am not afraid for myself, but for all my autistic brethren living in dangerous situations. I think of all the people that may make harmful or fatal choices because of this irresponsible news story and fear for all my autistic and disabled brethren.

Additional Resources

On Disabled People’s Right to Privacy (Especially Those With Caregivers) and Media Misrepresentations

On Responsible Reporting and How to Respond to Media Narratives of Disabled People

For Parents on Autism Acceptance, Meltdowns, and Aggression

On Filicide

Other Articles Related To This

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.

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.