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The Autism Spectrum According to Autistic People

Autism neurodiversity

“We will both die here.” The Neurodiversity Community Has Lost One of Its Most Beloved Advocates.

Note: This is an immediate response to the unexpected death of Amelia “Mel” Baggs. We apologize in advance if any inaccuracies occur in our post and encourage you to let us know if that is the case so that this piece can be corrected.

On March 28, 2020, Amelia “Mel” Baggs, one of the most celebrated and widely-read advocates for neurodiversity, posted a desperate plea for help on hir blog.

“I am going to run out of crucial meds. This is me shamelessly begging for money. And it needs to be a whole lot of money because meds are expensive and we are running out of ones that will keep me alive. Also we really need respite. Laura says a few more days of this could kill her, having to take care of me. I keep trying to take a load off her but somehow making more work for her. This isn’t sustainable and we are trying to survive.”

We Need Real Money Badly

Sie went on to explain that something was “massively messed up” with hir disability benefits and had no access to them, leaving hir without in-home care or funding for hir necessary medications.

The post finishes:

We are both under unbelievable stress. She has an autoimmune disease that can flare and kill under stress. This is no joke. This is not trivial. We need a metric crapton of real money. Or we will both die here. Everyone dies but I want to die of a disease or old age the way most people do, I do not want to die of preventable stupidity. Please help. Please help us. We are running out of everything. Please, please, please help.

Two weeks later, sie was dead.

A hand reaching out of a bed of fall leaves.
Image courtesy of Canva

At this time of writing, hir cause of death has not been released, and it may never be because quite frankly, it’s none of our business.

Really, to me, hir cause of death doesn’t matter because whatever it was, whatever it says on the death certificate, I am absolutely certain that it was preventable.

Ultimately, we all know that hir true cause of death is ableism.

This would be true whether sie died from violence or natural causes, because Mel documented hir struggles with ableism over many years as it pertained to both hir treatment as a human being and hir treatment by medical staff.

Hir first blog was titled “Ballastexistenz,” and was referring an ancient term for disabled people which viewed them as ballast, useless cargo.

In that blog sie wrote about life as someone with limited mobility, who required supplemental oxygen and a feeding tube. Once able to speak aloud, Mel reported a loss of speech in adulthood as a result of worsening medical conditions such as hir movement disorder, not to mention general loss of stamina and inability to mask as life took its toll.

Perhaps because sie had known how it is to be treated as a walking, speaking individual, sie was acutely aware of how the loss of speech and mobility changed hir in people’s eyes.

After I fell off of the conveyor belt of life that all the real people were on, I was presented two, and exactly two, choices for my future. The first choice was that I could remain as I was, and go to an institution forever. The second choice was that I could get better and live on my own with no disability-related support. People called the second one words like “hope” and “we believe in you”. I called it a mirage. And it was really that second option that drove me to suicide over and over. Because that was the option I knew I would never become.

Empty Mirrors and Redwoods

People fear and even hate disabled people because we remind them that they are both fragile and mortal. They don’t want to remember those things about themselves. And they find ways to physically shut us away, and mentally shut us out of their awareness. And they delude themselves that they are different. That something they do will prevent them from ever becoming one of us. And prevent them from ever dying.

Love, Fear, Death, and Disability

My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.1 I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.

Aspie Supremacy Can Kill

Defying autism researchers’ claims that autistic people are locked in their own world, or somehow unable to empathize with the world around us, Mel frequently wrote about hir deep interpersonal connection with the entire world.

A photo of someone's fingers stroking a lichen-covered rock. Image courtesy of Canva

I’d fill my pockets with rocks. Or sit on the ground and stack rocks all over my body. And the rocks would tell me about my own solidity. They’d tell me about being part of mountains. And avalanches and mudslides. And volcanoes. And all the other things rocks know about. A small piece of granite in my hand would tell me about the smell of sun on a granite mountainside.

They told me I was part of the world too. Of the larger world. Many people say the world when they really mean the social world of human beings. The world is so much bigger than that. They told me that even if no human being told me this in my lifetime, that I do have a place in the world. A very small, particular place just for me. They said that everyone has a place like that. And that when I am done with my place in the human world, I will turn into all the animals and fungi and plants and microbes that will likely eat my remains. And then I will have other places in the world entirely. I may yet be a redwood tree when I grow up, just like some rocks turn into sand in the ocean.

Empty Mirrors and Redwoods

If anyone was disconnected, Mel argued, it was everyone else. All of those who looked at hir and saw a waste of resources, a mindless automaton, a faking whiner, an object who experienced fewer feelings that sie herself felt emanating from the other objects around hir.

It is this belief that disability makes someone less, Mel insisted, that is at the root of all human oppression.

here are some ways that ableism embeds itself in other forms of oppression:

  • When gay people are considered to have a psychiatric disease.
  • When men’s rights activists claim that the women’s Olympics are just the Special Olympics under another name.
  • When people of color are painted as inferior and deserving of unequal treatment because their IQs are supposedly lower than white people.
  • When women’s bodies are seen as a deviant and irregular version of men’s bodies, all medical testing is done on men first and women only as an afterthought, ordinary experiences of women are considered medical while ordinary experiences of men are not, etc.
  • When eugenics is applied to poor people and people of color in addition to disabled people. (Eugenics is fundamentally an ableist idea, all applications of eugenics are applications of ableism.)
  • When black men involved in riots are deliberately diagnosed with schizophrenia and brain studies are done on them in order to pathologize them and by extension their political stances.
  • When political dissidents of all kinds (including those involved in anti-oppression work for their own groups, whatever they may be) are locked up in mental hospitals.

These may seem like scattered examples of specific kinds of treatment, but they’re not. They all have certain core traits in common, and they all combine central characteristics of their own oppression with central characteristics of ableism. Such that it literally does not matter what kind of oppression you face, you’re guaranteed to face ableism as a component part of it. You can’t get away from ableism.

You can try, of course, and many people do try. The most common way other oppressed people deal with ableism is by not really dealing with it at all. Instead of addressing the ableism that forms the core of the problem they’re facing, they distance themselves as far as they can from disabled people.

There is ableism at the heart of your oppression

Reading the above quote was mind-blowing for me. It completely changes the conversation.When we say “gay people are not mentally ill,” we are saying, “You should not treat them the way you treat the mentally ill.”

But does anyone deserve to be treated as less, whether or not they are mentally ill?

When we argue against the false belief that people of some ethnicities have lower IQs, we should be saying “IQ is irrelevent to the conversation. All humans deserve to be treated equally and individually, without prejudice.”

There is no reason to leave the many depressed, anxious, or otherwise mentally ill people behind. There is no reason to leave behind people with cognitive disabilities.

Ableism doesn’t excuse treating someone as less than a complete human being. Mel Baggs taught me that.

A photo of intertwined roots. 
Image courtesy of Canva

Disconnection is an illusion.  Underneath our feet is more connection than most of us can imagine.

Visiting the Redwoods

Now we must face the fact that Mel Baggs has finally succumbed to the ableism of a world that sie otherwise loved and valued.

Ableism infused Mel’s life, from the high price of medications, to difficulty accessing vital benefits, to the general stress of dealing with everything that comes from being a chronically ill, nonspeaking disability advocate.

Any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either.

Deliberately stressing me out is, at this point, assault.

We know that Mel was under stress before sie died. We know that on April 3rd, Mel posted that Personal Care Assistants had been deemed non-essential. Hir post was brief, perfunctory, and full of typos – all unusual and atypical of hir usual gracefully-fluent speech.

We know that two days before Mel’s death hit the news, sie made a brief post about changes in hir hospital due to coronavirus.

My hospital has air locks.

And a “Radiology Patient Holding Area”.

They won’t do standard x-rays on a patient with osteoporosis who has fallen because their x ray machines are contaminated.

Necessary but spooky as all hell.

Surreal

I am angry about Mel’s death.

I did not know hir personally. Sie likely had no idea that I exist, in that sie would not have known my name, or my face. But Mel’s writing showed that sie knew us all. Sie felt a connection to the rest of the world and all of us in it.

In 2017, she posted this picture and sie said,

 I’m looking at you.  Whoever you are.  One human being with a soul to another human being with a soul. I see you.  You are real.  So am I.  We’re in this together.

I am angry about the loss of Mel Baggs.

Or, should I say, the transformation of Mel Baggs, who hoped one day to grow up into a redwood tree. Because we cannot hear hir voice, wherever it has gone. Because sie will never write another poem. Because hir loss is a blow not only to the people who knew and loved hir in life, but to all of the disability community, who lost a powerful voice.

I am angry because this should not have happened. Because in a world where disabled people were valued as equals, where disabled people were given the care that all human beings deserve, sie would not have been so sick. Sie would not have fallen and needed x-rays.

Coronavirus might not have infected hir hospital, contaminated the x-ray machine, if not for ableism. How many weeks did people spend dismissing the virus because it “only” killed the old and the disabled?

In a world without ableism, Mel Baggs would be alive.

But sie is dead.

I am angry.

But Mel’s writing rarely pushed me to be angry. Powerful? Yes. Defiant? Often. But hir words were rarely words of hatred. Hir words pushed me to see, to connect, to accept rather than dismiss, to love rather than devalue.

My deepest condolences go out to hir family, friends, and pets. I am sorry for your loss. I hope the things sie crocheted for you bring some comfort.

I hope that you can still find hir in the place where the redwoods grow.

Unfolding

by Mel Baggs

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
Always
Even
(Especially!)
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

Photo of a clump of mushrooms growing on the forest floor.

Image courtesy of Canva

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6 Responses

  1. The hospital’s explanation for why couldn’t they wipe the X-ray machine with disinfectants ?
    The way to force explanations out of systems motivated not to give them, is to back establishing my well-evidenced principle that noncommittality is a violation of vulnerability statuses. It can already be cited to any institution, that vulnerability statuses force all answers to be committal not noncommittal.

    1. I agree. If makes no sense. This virus is easily killed with nothing but plain soap. I doubt the X-ray itself would have saved Mel’s life but ableism collectively definitely is.

  2. I just found this out. I cried a lot. I’m so, so angry the world is a piece of s*t that allows this to happen. Thank you so much for writing this.

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