Don't Mourn For Us ... no, seriously, stop

One of the most consistent reactions disabled persons get is the sorrow and pity others feel for what they think must be our "wretched" existence. Worse than that, is the framing and belief that we are a burden on our loved ones and society; that we are a stone around the neck of our parents, partners, and carers. 

Almost thirty years ago, Jim Sinclair gave a presentation at the 1993 International Conference on Autism in Toronto outlining many of the features of the Neurodiversity Paradigm and the consequences of how our lived experiences are twisted by many non-autistic (allistic) carers. Sinclair's speech and subsequent article (published in the Autism Network International newsletter Our Voice, Volume 1, Number 3, 1993) continue to resonate decades later.

If there is an "Autism 101" class, Jim Sinclair's "Don't Mourn For Us" should be required reading in it. It simply must be one of the first things that a parent confronts when they receive their child's diagnosis. I also think it is one of the best introductions to the ideas of the Neurodiversity Paradigm, and I believe it applies to so much more than autistic persons and our parents alone.

Read it, reflect on it, come back and join me for some of my thoughts extending off of the work. It's less than two thousand words and freely available here: autreat.com/dont_mourn.html 

A Spanish-language version is available here: autreat.com/no_sufran.html

The job of parents is not easy, no one is claiming otherwise; there is going to be both disappointment and joy. 

An example: I remember my mother was upset I did not attend my high school prom (or really, any school dances). She just wanted me to "be normal".

Knowing I disappointed her and that she thought of me as abnormal upset me more, when I was already dealing with my teenage inability to have a romantic relationship or be interested in a night I could not imagine as anything other than highlighting my unpopularity. 

Yet, my mother also celebrated my ability to see connections and patterns. At a certain point in our relationship, when I was still a child, she thought of me as being more reliable than her, of knowing the "right thing" to do. She was proud of that part of me.

Both parts are interwoven with my being autistic.

Some parents expect their children to do what they did, to follow in their footsteps, to be a "mini-me".

When it becomes apparent that we are different on the level of having a different neurotype, of effectively speaking a different language, that their hopes, dreams, and expectations for our lives are irrevocably altered, there is going to be a period of mourning.

As Sinclair says, this is grief over the loss of the hopes and expectations they had for their child.

Parents of queer children face similar changes in expectation. Grief over the loss of a fantasy should not be trivialized, but it also should not be placed on the child. 

You do not need to be queer or disabled to disappoint your parents. 

Someone being queer or disabled is not the death of an allo-cishet abled person any more than being a girl is the death of a boy. Yet, there are parents who blame each other and their children when they have girls instead of boys, and others who blame themselves when they have trans children. 

That's toxic, unhelpful, and unproductive. That's layering trauma over identity.

If my kid isn't normal, I'm going to force them to be normal

"I'm having pizza tonight for dinner."
"I hate pizza and there's something horrible about you even for suggesting that. Is it because I didn't hug you enough as a child that you turned out to like pizza? Is it because your dad left us?"
"Well, now my dinner is ruined, I feel like garbage, and I think you're a jerk."

But what if you kept pizza away from them their entire life? Taught them that pizza-likers were going to Hell and deserved it and pizza-eaters were openly flouting the social contract. What if you rewarded them for obediently consuming calzones and punished them whenever they questioned if pizza was any good? What if you, for all intents and purposes, brainwashed them into the Calzone Religion?

Bear in mind, they choke every time they eat calzones and get an upset stomach. They sometimes dream about eating pizza, but they hate themselves for succumbing to that weakness.

That's behaviorism, baby. That's also cruel and unusual. That's torture. "Conversion Therapy".

The needle is finally starting to move on "Gay Conversion Therapy" being recognized by the public as being a "Bad Thing". Yet, the same thing is still being approved far more often for "Trans Conversion Therapy" and it's not just being approved, but being lauded for "Autistic Conversion Therapy". 

There are finally starting to be laws against queer conversion therapy torture, but not only are there not laws against autistic conversion therapy torture, it remains one of the only insurance-approved "treatments" for autism. So much so that healthcare practitioners who want to help autistic children will sometimes label their help as autistic conversion therapy torture so they can get money to help.

Well, they do not call it "Autistic Conversion Therapy", even though that is what it is. They call it "Applied Behavioral Analysis" or ABA. If it's ABA, then it's unethical behaviorism. The only debate is whether or not a therapy is only calling itself ABA.

Torture the kid when they do what you don't want them to do, reward them when they do what you want. I would be surprised if some of the individuals doing it didn't also train them to salivate at the sound of a bell. (Pavlov was a bastard by the way. I mean that figuratively, I'm not going to take the time to check if he was literally one).

I'm not saying that "punishment and reward" is necessarily evil or unethical. I'm saying that when the goal is to override an individual's phenotype through hacking their brain in order to tilt them so far that up is down and down is up, well, there's no other way to put it than fucked up.

What's "interesting" though, is that you're not changing who someone is with those sort of behaviorism things, you're just layering conflict. You're changing their observable characteristics. You're putting up walls and dams. You're splicing together the things that will bring them peace and joy with self-loathing. You're making them swallow down pain and discomfort for your comfort and public presentation.

The creators of conversion therapy thought of autistic people as being less than human, so they approached us as they would a malfunctioning machine. We were "animals in human shape" to them. 

Anytime someone says, "Behaviorism works" or "It's the only evidence-based 'treatment' for autism", ask them what it is working to do. Ask them what it is treating.

Nearly always, the answer is the external presentation of "symptoms" of autism. It's not about the health and well-being of the child, and it is certainly not about their happiness—unless you are saying that this sort of lifelong torture is an improvement over the torture they face by being identified in society as "different". 

If you want an autistic kid to grow into a "happy, successful" autistic adult, I'd say focus your efforts on reducing the stigma on being disabled and being autistic, not drawing a smiling mask overtop their face and declaring "Job's done!"

I'm not sure if I've been inflammatory enough to get my point across, so let's use an analogy I'm sure folks will listen to rationally. I liken the practice of covering up the presentation of autism to folks who say that "abortion is murder" while their solution to try to reduce abortion rates is to make it the most nightmarish experience possible while simultaneously outlawing and forbidding anything that would naturally reduce abortion rates like sex education and access to birth control. 

Personally, I disagree with their premise, but their follow-through and the trauma they have caused is enough for me to consider them hypocrites. 

"A life worse than death"

Autism, even without co-occurring conditions, is a disability. It is also true that autism is even more disabling in today's society and culture than it needs to be.

Before accepting myself and allowing myself the grace I extend to others, I think it was probably impossible for me to be happy considering every other part of my life. 

Now, I'm already fairly privileged in being white and coming from the so-called "middle class". I can imagine a scenario where I am able to go through life without needing the support and accommodation I ended up requiring. I could have at least pushed my eventual breakdown and burnout farther down the line, although 2020 would assuredly have been a Herculean hurdle regardless.

I'm not me if I'm not autistic.

The parts of me that I love the most? They're autistic traits.

The parts of me that I hate myself for the most? They're autistic traits.

The parts of me that I fear the most? They're autistic traits.

The parts of me that give me the most hope? They're autistic traits.

Even if the traits are not on a list in the DSM or pathologized by some eugenicist (and pretty much all of them are), autism is pervasive in every aspect of my life and I cannot imagine experiencing life without autism. 

You're saying that there's some miracle treatment that will remove everything I hate about myself while maintaining everything I love about myself? Well shee-it, sign me up for that snake oil, hoss. 

Do you also have a way that I can continue growing wiser and learning more while my body doesn't age? Do you have a way that I can love freely and be loved in return for who I am? 

I have regrets. I have considered that maybe death was better than continuing.

I also have trauma. And that trauma made me question those things a lot more than being autistic ever did. Though, like everything else in my life, that trauma is interconnected with my autism. Part vulnerability, believing in others, but also how I process trauma and how my memory works. 

By mourning my identity, are you saying that I'm broken? That I'm spoiled? That my baggage is too much of a burden?

What do you have going on that makes you so special? Excuse me, so I dunno', similarly-abled? Un-baggaged? What makes you so normal?

No matter if I'm ever productive again, no matter if I'm depressed and in bereavement for the rest of my life, my life is worthwhile. Your life is worthwhile. Life is worthwhile. 

By mourning for me, what I hear is you have given up on me. I hear that you are thinking of me as dead or worse than dead.

Don't mourn for me, that's self-serving baloney. You're mourning for your expectations of me. Maybe, you're thinking of some cautionary "what if that was me" nonsense. I can experience joy, love, and fulfillment.

I can also experience despair, shame, and loneliness.

I am alive. 

What I usually consider to be the most painful sentence ever spoken to me was, "I'm praying for you."

Not that I was particularly anti-praying back then, but it was not a sentiment of "I believe in you". Instead, it was a "I cannot do anything for you. I'm giving up on you. You're in God's hands now."

I never heard that person's voice again. 

Day of Mourning

The Disability Day of Mourning is focused on disabled persons who died at the hands of their carers. On filicide.

The murderers have support for their actions in wider society and the media reporting. The murders are framed as "mercy killings", as "euthanasia", as being the only recourse for parents too burdened by the existence of their disabled child. The sentiment is almost never that we should give families and carers more support, but nearly always that the disabled person is better off dead.

Look up Aktion T4 if you want to think about where disabled people being a burden gets you. Think about Asperger if you want to think separating autistic persons into "worth living because they're productive" and "life unworthy of life" or "worthless eaters" are reasonable categories.

If you separate us, you do not make it easier to get support for those of us who need it most, what happens is it becomes easier to warehouse and forget. It becomes sink or swim, and far too many autistic children sink. Arguably, a statistically unreasonable number of autistic children sink or otherwise die from accidental drowning.

Autism Speaks continues the conversation of our "wretched" existence and how much of a burden we are. They frame us as the cause of every ill that befalls our family. To them, we are apparently the cause of divorce and abuse. We are changelings swapped out for your normal child who was stolen away by autism. "You could be happy if not for your autistic child, give us money if you ever want a chance at normalcy again."

Only they do not particularly seem focused on the happiness of the living; really appears as though they are much more interested in preventing autistic people from being born.

In one of their most prominent fundraising videos—which was also screened at Sundance—an executive at Autism Speaks is speaking to the camera saying that she wanted to put her child in the car and drive off the George Washington Bridge. She then goes on to say the only reason she probably did not do that is because she has another child. All of this was said with her autistic daughter present in the room.

This is an old film, from the early days of Autism Speaks; way back in 2006 (/sarcasm about how long ago it was, although it was in the second year of Autism Speaks). Since then, the executive left and founded her own autism "non-profit", one that was not focused on the already-debunked claim that vaccines cause autism like Autism Speaks was back then (and still has not entirely divorced themselves from). She has since apologized. 

Autism Speaks manipulated the appearance and external behavior of the participants in the film in order to present the autistic bogeyman they use to scare up funds. They still do these things, even as they have grown more savvy in cloaking themselves in the language of the Neurodiversity Paradigm. 

The focus of Autism Speaks and like-minded organizations continues to be on how to stop autism, how to "cure" the planet from the plague that is our existence. Money continues to get earmarked for identifying us and torturing us, with research into improving our day-to-day health and happiness being an afterthought.

It is not an exaggeration to say that many consider Autism Speaks to be an anti-autism hate group.

In just seventeen years, Autism Speaks has spread their filicide-sympathetic messages, control millions and millions of dollars, and with only a few minutes of a zoom call-in can shut down pro-autistic legislation.

For the Disability Day of Mourning, I think it is a mistake to focus just on filicide. The same cultural and societal messages that contribute to folks thinking their only recourse is to murder their loved one are the messages that contribute to disabled folks thinking we have no other choice but to die. 

I'm not saying accepting us would make our lives easy, but we know it would make our lives better.

And, just like being queer, we know that when one's family and community support and accept us, we are happier and less likely to commit suicide.

Don't mourn for the living, we are still here and there is plenty to do with that energy. There is plenty to do to make us feel welcome and safe, to be accepted for who we are. Mourning for the living makes it easier for us to die. Mourning for the living makes it more acceptable when we do pass.

"They're at peace now."

Fuck peace, I'm alive and have a chance at happiness here!

"They're in a better place."

Make here and now better and stop relying on an unprovable afterlife to clean up your sins. We are a natural part of human diversity and have every right to life, liberty, and the pursuit of happiness the same as anyone else. 

Our lives are worth living.

I'm not giving up.

Thank you for reading.