Tube Love

Drawing of a gastrojejunostomy feeding tube, GJ tube for short.

Tube Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Art and poem by Mel Baggs, art 2013, poem 2014.  This is my contribution to Gastroparesis Awareness Month.  To learn more about Gastroparesis and related forms of Digestive Tract Paralysis, go to the G-PACT Website.

I also wrote a longer and more serious post about my life with gastroparesis, which you can read here at Gastroparesis Awareness Month: A Day In The Life.

In My Language

If you’re sick of videos, skip this post.

This is dedicated to Ashley X and everyone else who’s ever been considered not thinking, not a person, not communicating, not comprehending, and so on and so forth.

It’s also dedicated to people like Bryna Siegel who claim that the way we move is automatically purposeless, pointless, harmful to our development, and can be eliminated with no cost to us (but may be able to be used as a “reinforcer” in controlling other things we do).

Google version (click here for large version):

http://video.google.com/googleplayer.swf?docId=4998359028958016786&hl=en

YouTube version:

There’s thanks at the end to a zillion different people who influenced making this. I’ve wanted to make it for a long time, and somehow Ashley X’s situation pushed me into the final stages of it, even though it never talks about her directly. Lucas and Charles over on Michelle’s message boards had planted some of the seeds, Donna Williams gave me (probably without meaning to) one of those final little pieces of things that is tiny but makes everything make sense in a certain way, and this was the result.

My response to the “Articles of Understanding”, on video

The following is my response to the Autism Speaks/GRASP “articles of understanding”, put onto video.

Edit: And now that I know how, here’s a captioned version (sorry for the asynchrony of the captions, they were synchronized when I made the video and YouTube mangled them):

Here’s a transcript, since among other things I can barely edit a video (hence the very short length and lack of detailed writing, at least that’s one of the reasons) and don’t have the expertise or software to caption one. The video just basically shows me sitting on a couch as I play the recorded message on my speech synthesizer, and then at the end my cat decides to jump up and nuzzle me.

This is my response to the Autism Speaks articles of understanding with GRASP, the Global and Regional Asperger Syndrome Partnership.

I am a non-speaking autistic woman. While I do not agree with functioning labels, I have been labeled low-functioning in the not-too-distant past and am considered severely disabled. People who look at me without seeing me type often think that there is nobody inside me. I have many of the difficulties described in Alison Tepper Singer’s article about her daughter, and more that she did not describe.

It is wrong to say that your own child has no skills. It is wrong to go on a national video and say you have considered killing your autistic child. My parents faced worse hardships with less privilege and never once thought of killing me. It is wrong to condescendingly assume that autistic self-advocates have never heard of those of us labeled low-functioning, and that somehow the so-called low-functioning among us have no skills and need a cure, and that all you needed to do was say we exist and then everyone would understand what you want to do to us.

Our viewpoint was not represented in this “exchange of ideas” between GRASP and Autism Speaks. All the two of you have done is repeat caricatures: The autistic child happy in a world of her own versus the autistic child needing to be cured, high-functioning versus low-functioning, Asperger versus autism, able versus incapable. You have equated differences in the way we function with differences in the amount of rights we deserve. These things are not how we live, and you have avoided the substantial issues, including the fact that it is not only those labeled high-functioning who oppose cure.

Your articles promote misunderstanding, not understanding. Both of you have essentially told the world that I and others like me do not exist. I am here to tell you and the rest of the world that we do.

Survival situations

I’ve had several people inform me recently that they want to cure people of being autistic because they want them to be able to handle survival situations in which they’re alone in the middle of nowhere or something and need to handle assorted aspects of survival.

Those situations are not all that common, but I’ve been thinking about it, and I think many autistic people, even autistic people who have trouble in conventional situations, would not have as much trouble with those situations as people assume. I don’t actually think, by the way, that most non-autistic people could handle a situation like that. Nor could many autistic people. But I know some things about myself that might contradict conventional wisdom on this matter.

In a survival situation, I would be constantly triggered into actions, and I would probably take whatever actions I needed to take in order to survive. If I were dumped out on the street or in the middle of the woods, there’s a lot I wouldn’t necessarily understand intellectually, but I think I would be in a position to take care of myself more than people would imagine by seeing me in my apartment.

In an apartment, there is nothing that triggers my body into action the way it would in those situations. There’s no feature of an apartment that makes it pressingly immediate to use a toilet or a refrigerator (when I first moved into an apartment I used everything from the floor to the front yard). Given that the majority of what I can do is based on stored knowledge that I can’t deliberately access but situations in the physical world cause me to access, I am indeed very incapacitated in an environment that does not lend itself to my strengths. I frequently need food set in front of me to trigger “eating,” water to trigger “drinking,” toothbrush handed to me to trigger “brushing teeth,” and many things just flat-out done for me.

Put me in a situation where I have to find my own food and water, go to the bathroom on the ground, possibly move around a lot in response to various threats, look for or set up shelter, and so forth that sets me up so that all the stored information is triggered and I’m getting very little information that is telling me to do something else irrelevant to survival, like, say, blog or stare at blocks.

Basically, if you put me in a survival-type situation for a month, I might be more likely to be healthy at the end of it than if you put me in an apartment with no services for a month.

I remember hearing several news stories about autistic children who were thought to be “too severely autistic to be aware of things like this” who survived for a long time when lost in dangerous areas of various kinds, until someone found them. It’s even rumored that the Wild Boy of Aveyron was an autistic boy who had survived a failed infanticide.

While it’s the case that many autistic people, as well as many non-autistic people for that matter, would not survive in those situations, I’m not totally sure that it’s the ones people would think. I know that if you dump me into a situation like that I’m far more likely to look competent than if you dump me into the situation I’m in now. Not that I don’t prefer the situation I’m in now, but that you have to take autistic learning styles into account when deciding what we might or might not be capable of.

Who thinks what about being autistic

In response to the NPR show, I’ve seen people (who must not have actually listened to the show), saying that it’s only auties who speak, or who are regarded as “high functioning,” who are happy with being autistic or oppose the idea of curing autism. As far as I’ve been able to tell, this isn’t the case.

There’s a lot of different opinions on curing autism, not just two, of course. And I don’t believe in the way the rest of the world divides us up into functioning levels, that is too simplistic and assumes there’s only one dimension to being autistic, it doesn’t even bear up under scrutiny. But if I were to take autistic people and how the world generally divides us, and take our opinion of being autistic, I really don’t think I’d see much correlation to the world’s false subtypes.

I’m going to post the following quotes, but with a bit of a disclaimer attached. I’ve found that aug-comm-using auties are often tokenized even within the autistic community. When we agree on a basic principle such as the way we think about being autistic, that can be used to say “See, we have those people too.” But an aug comm user would have to be pretty oblivious to hang around the autistic community for very long and believe that we are considered to be on equal footing with other autistic people. That’s one of many divisions that unfortunately still divides this community, in subtle and not-so-subtle ways. So if you see a post like this linked to as evidence that this is a wonderfully and totally inclusive community for all autistic people of all kinds, think again, we’re not, on many levels. But also think again if you hear that the “non-inclusiveness” is just that we don’t like the idea of cure and don’t understand “real autism” which is defined as autistic people who want a cure.

I’ll start the quotes with a quote from Cal Montgomery that sums up the point of this entire post in a way:

I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.

Some political opinions about autism:

I value my AUTISM above all else with which my life has been “gifted.” While I also have cerebral palsy and epilepsy and these are wonderfully special to me, and I often think being “unable to speak” is a blessing in disguise; none of these remotely match the total delight of being AUTISTIC.

I can see and hear people reacting to this by wondering “Is she serious or is she pulling our legs?” Well, wonder no more! I mean everything I have said and am about to say.

[…]

What do I see as the gifts that autism has given me? My incredible intelligence, unique insights, talent for improvisation, creativity in writing and music, wonderful memory, and awesome ability to teach and help others understand… I believe all of these are valuable “side-effects” of my AUTISM that far outweigh all of the “negatives”. I am who I am at least partly because of what I am, and that includes AUTISM and how it has gifted my life.

That was written by Sharisa Kochmeister, a woman with autism, epilepsy, and cerebral palsy. She was, until learning to type (which she now does independently), presumed to have an IQ of 10. The full text of what she said in the above presentation can be found at the Watch Our Words website.

Therefore, Autism is a friend, a comfort, a companion – albeit a rather annoying one at times, but so are all companions. It is also a protector, a buffer… And it’s who I am. Jim makes the statement that if it were possible to separate the autism from the person, and it were done, then what you would have left is not the same person you started with. In my case, it wouldn’t even be a person; it would barely be an entity, or alive without autism. i would virtually not survive. (maybe a shell… surviving; a physical body, but that would be all. There would be no being.)

Kim, a Canadian autistic woman, wrote that. She learned a non-communicative form of speech as a child under pressure and only began to use speech to communicate as an adult after using a communication device for awhile. Last I heard, she still alternated between speech and typing. The full text of what she wrote can be found at What Is Autism?

World needs retards. Yes! Retards, retards, retards! You can say it, too. Retards. Go ahead and say it. Go ahead and shout the word. Retard is who I am.

Elana Connor was, at the time of writing a short piece reclaiming and taking pride in what’s normally a nasty epithet, a girl in California who had recently begun typing. The full text of what she wrote can be found at Why Retards Are Sad In This World. That is apparently one of the first things she ever wrote.

I dreamed of being normal, the best that I could be —
But it’s awful being normal; why can’t you all see?
I’m tired of being normal — autistic’s what I am.
Why can’t we all be normal, being just as I am?

That is from I Dreamed of Being Normal, by Jeff Seeger.

I am not defective. I don’t need to be repaired. Allow me to be the person I am.

That is from I Am Not… An Autistic’s Response to Prejudice by Joel Smith, a part-time aug comm user and proud autie.

All people are real, in the deepest sense of that word. That means that there is no such thing as a non-human human. But if you look around this room, you will see people who look at least non-standard. And that is where the problem begins. We live in a country where image is kind of a reality more real than reality. My main answer to that is: I don’t need surgery to make me real any more than a beautiful woman “really” needs her eyelids sewn back. The fact that I think I do and she thinks she does is more fairy tale than real. Eagerness to be like others didn’t make Pinocchio real — it turned him into a donkey! And eagerness by parents to cure autism or retardation or compulsiveness will not drive great distances toward the final solution to the actual problem. Because the person who believes “I will be real when I am normal,” will always be almost a person, but will never make it all the way.

That is by Eugene Marcus, who uses facilitated communication. The article is On Almost Becoming a Person.

When Doug Biklen was recruiting authors for his anthology, Autism and the Myth of the Person Alone, he said of Lucy Blackman:

Blackman […] is hardly any more accommodating to what she perceives as my interest in how-to strategies. “’How to’ for what?” she asks. When I requested that she write about her experiences with autism so that others might benefit from her analysis, she told me she found it annoying to be approached about such matters and not about her ideas on non-autism-related topics. She felt my agenda assumed she might be “wanting to be normal.” She does not. Blackman reminds me that my agenda might not be her agenda, and that if someone feels it valuable for her to be heard, she would rather discuss her “pure intellectual thought.” She is not about to unveil a series of “remedies” or “practices.”

He did convince Blackman to write for his book, and this is part of what she said in it:

If I were to say anything about autism, it would be how fascinating it is. The idea that autism is fascinating is more that it is what I hope for the future, that my kind of thought processes are seen as possibilities for the next genetic shift in Homo Sapiens, not that it is a progression but that further down the track the slight changes in individuals scattered among the population is a slight difference in problem solving. Unbelievably those of us who have greater difficulties may be nature’s experiments, and you can’t expect evolution to get it right every time.

Recently, Estee wrote a blog post called My Visits with Larry Bissonnette and Jonathan Lerman. Both are artists who are also autistic. Here is her account of part of her conversation with Larry Bissonnette (another co-author of Autism and the Myth of the Person Alone), who communicates by typing:

Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”

“People who think your disability is a sickness need to be cured of their ignorant attitudes.”

I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.

I started with a quote by Cal Montgomery (who speaks using a keyboard and is heavily involved in the cross-disability movement), so I’ll end with one from the same article, Defining Autistic Lives, which was a review of Autism Is a World.

But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify “defects” in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people’s failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing — or at least controlling — us. And having made that conclusion, they continue to accept or support ways of living that shut us out.

Again, these are obviously not the only opinions of people who use augmentative communication, but it would be silly (one would think) to assume that all people who fall into any particular category have the same opinions about everything. (I’m not saying that everyone’s equally right, just that everyone has varied opinions.) And these are not saying there are no rifts in the autistic community and that we’re one big happy utopian family, because we’re not.

But it is evidence that our opinions about being autistic (or as some put it “having autism”), and our deemed “functioning level” (which is often, for some reason, very speech-dependent), are not particularly correlated. People who do not believe in cure and/or find some value in being autistic are represented in the whole autistic “spectrum” as far as anyone knows (this includes people who had no means of communicating about it for a long time), and so are people who do believe in cure or do not find value in being autistic. So it’s about time people quit making ridiculous comments about “If you were one of those people who couldn’t talk, you would not believe what you believe.” Our differing beliefs come from our differing worldviews, not our “functioning level” in the eyes of non-autistic people.

Condensed old-post response to twisting of experiences

Typing hurts so this is a condensed version of a long post. Apologies in advance for lack of nuance. The long version was written before my last several posts (written last week) and resemblance to later happenings (which in some places is strong) is coincidental.

This is about me but surely applies to many others so should be read as broad-contained-within-narrow. So should many of my posts which some people mistakenly read as person-specific or autism-specific.

People call up an image with words. They use it to sell their cause of prevention, cure, institution, etc. The image is in many heads a fuzzy stereotype, in other heads such stereotype imposed on real people yet untrue even on the people.

People throw words in my face one after another as justification.

The words evoke real inside life for me not life of hypothetical or outside person.

They say ‘banging head’ I know the feel the constancy the effects on vision motor skills and thinking and other-side-of-head splitting headaches and blacking out. I know counting of thousands of banging per hour.

They say ‘institution’ I see hear feel smell real concrete lived experiences inside.

They say ‘alone’ I remember total isolation. Also remember presumed lack of social interest while interested. And remember how long I believed, and gave up on the belief, that there must be other people like me in certain ways, in the world, before I started one by one finding them.

They say ‘in a corner’ I remember exact one corner, specific corner, spent ages barely moving all the details of this.

They say ‘no understanding’ I remember the waterfall sound of speech still often happen, and pattern rather than typical abstraction. I also remember still often people speaking as if I not exist not understand people even telling each other “she doesn’t understand”. I remember nonsense sounds that years later understood the words, that were thought I would never understand or remember. I remember understanding things others never even thought to understand and thus never tested.

They say ‘no communication’ I remember endless attempts to communicate ignored, robotic non-communication praised. I remember interpreter after interpreter barred from helping because “she could not possibly be communicating that complexly with only her body, we see no real communication”. I remember impossible to communicate many things frustration, I remember before I knew what communication was, I remember only knowing bits. I remember now using alternative communication, I remember gradual loss of speech.

They say ‘will never’ I think of all people said I will never do just ten years ago that I have done. I think of prerequsites for ‘independence’ that I never met yet but here I am in my own apartment.

They say ‘unaware of danger’ I remember balancing on fences, climbing trees in unusual ways, walking into traffic, licking or trying to eat inedible objects, sometimes unaware sometimes unable to do otherwise even if aware. I remember interest in straight lines and circles and shining lights so intense it overrides any notion of ‘wheels’ and ‘road lines’ and ‘headlights’.

They say ‘no initiative’ I think all the time I spent barely moved yet needed assistance waiting yet never got what I was waiting for because not moving meant to them empty-headed or stubborn. I think of also having different initiative than pleased captors.

They say ‘no sense of time’ I think of stare at object no sense of different between hour or day. I think random sleep. I think of moment passing without reflection. I think of barely even now grasping difference of past/present/future and my conception of the world being outside time.

They say ‘no body awareness’ I think of having other people touch to tell me where I am and how to move. I think of feel pain but not know where. I think of body as external sensation just as room is, cannot always differentiate pain or itching from a desk.

They say ‘bite self’ I taste it and see the bite marks on hands and arms.

They say ‘incontinence’ I not only know the feel but also the feel under neglectful circumstances and going everywhere instead of one place and sitting in it for hours if stuck.

They say ‘violence’ I recall caged-animal fear and lashing out and treated with more violence than I ever had the power to inflict.

They say ‘mind of a child’ and I see test results putting developmental so-called ages on what I can and cannot do, but never being those ages at the time.

They say ‘screaming’ I remember doing so until I lost my voice at home, in public, in institutions, or in other places.

They say ‘no emotion’ I remember emotions without usual expressions or not in the usual situations, being chastised for ‘inappropriate’ emotion.

They say ‘no personality’ I remember records stating I probably had severe/complex developmental disability prevented formation of cohesive personality.

They say ‘cannot dress self’ I think of prompting both physical and verbal, ‘cannot feed self’ and I think of help moving arm and when they move my arm wrong by accident and what malnourishment does to the body and mind with pain and irrationality and food-obsession. I think of being walked step by step through every activity of daily life starting not with “pick something up” but “here is how to move one body part, now here is how to move the part next to it, and the next one,” all the way through the task, collapsing in exhaustion several times throughout and having to start over, doing it wrong anyway, never getting it all done. I remember stopwatches and clipboards in futile attempts to teach me some of these things.

They say ‘no communicate pain’ I recall many urgent medical problems never mentioned even with adequate communication system. I recall also being told I was not in pain because no facial expression even in excruciating pain. I remember taught not to scream with broken joint. I recall 20 years of severe pain never diagnosed. I recall emergency workers (ignorant of auties) saying I must be on PCP because of total imperviousness to pain when fighting them.

They say ‘low functioning’ I see the records and hear the conversations that use this and many equivakent terms on me, not ancient history but a few years back. I see the bottoming on test results of ‘functioning level’. The expectation in people’s manner of my being not really here or thinking. The arguments about salvageability like I am a shipwreck.

They say ‘brain scan is proof’ I remember the proof that I had a ‘broken’ brain the brain scan used as ‘proof’ of so many things I was supposedly incapable of. I remember hearing people say “her brain beyond repair no sense helping her she is gone no longer a person didn’t you see her chart look at this look at this get her out of here worthless impossible to help nobody home” outside room I was strapped in.

When people use these stereotyped repetiton of words and phrases (non-auties do it too in both senses of the word stereotype!), or the photographs or drawings meant to evoke same, it is, bam-bam-bam, one in front of the other. Each one conjures up not fuzzy half-formed abstractions or images of other people, but real vivid immediate multisensory multidimensional concrete experiences from my life (not even the life of a person around me).

After that bombardment, people use it to justify things I find horrible, as if my mere existence is unthinkably awful. If I call them on it, well then there are the “But we don’t mean you” statements, the inability to conceive that these conjured-up constructs are more concrete and immediate for me than for them. If I try to explain these bombarded images and smells and sounds and feels and everything, my motives and emotional state and character become questioned and analyzed and demolished. (No I am not constant-angry, asking for pity, lying, or hating.)

But evoking these strings of experiences at me one after one after one and then barring my access to them and then using this to argue against everything I believe in is a lousy tactic. I do not need it explained patiently to me that my life and the lives of my loved ones exist, while simultaneously twisting meaning and value out of all of us and ending with “We don’t mean you” when so clearly they do.

How to suppress disabled people’s writing.

I have a book. I have to confess, I’ve never actually read the book. I’ve tried, but the language in it is difficult for me to understand. This does not prevent me from loving the cover of the book. The book is pictured here, but for those who can’t read it from the picture, it says:

She didn’t write it. (But if it’s clear she did the deed…) She wrote it, but she shouldn’t have. (It’s political, sexual, masculine, feminist.) She wrote it, but look what she wrote about. (The bedroom, the kitchen,her family. Other women!) She wrote it, but she wrote only one of it. (“Jane Eyre. Poor dear, that’s all she ever …”) She wrote it, but she isn’t really an artist, and it isn’t really art. (It’s a thriller, a romance, a children’s book. It’s sci fi!) She wrote it, but she had help. (Robert Browning, Branwell Brontë. Her own “masculine side.”) She wrote it, but she’s an anomaly. (Woolf. With Leonard’s help…) She wrote it BUT…

And the title of the book is How to Suppress Women’s Writing by Joanna Russ.

Not having managed to understand more of the book than the cover, I’m not going to comment extensively on the book. But for this post, I’m going to concentrate on the ways I see my writing, and other people’s writing, suppressed constantly, before it even gets to all those “buts”. The “She didn’t write it” part seems to be where a lot of people get stuck with us.

She didn’t write it, because someone was touching her when she “wrote” it.

This is the standard argument against facilitated communication. If someone touches us to help us write things, then obviously it is the person touching us who wrote them.

She didn’t write it, because she wasn’t looking at the keyboard.

See my last post for in-depth information on that myth.

She didn’t write it, because her speech sounds different from her writing.

People often assume that speech and writing should be congruous, and that if writing is somehow more articulate than speech, or contradicts what is said in speech, then it is the writing that is suspect. Speech nearly always trumps writing in what is believed of us. So, if we have speech that goes on autopilot while we write, or if we say the opposite of what we write, it’s our speech that’s believed.

She didn’t write it, because she was just being exploited.

This is one I get a lot, especially in the offline world, especially if I’m saying something simultaneously with someone who gives off a lot less of an air of cognitive impairment than I apparently do. What happens is, while people may accept that I am doing the mechanical act of writing, the assumption is that I didn’t come up with any of the ideas. I got all the ideas from another person, who is exploiting me for their own uses. The interesting thing about this one is that I can actually be the one coming up with some of the ideas, but the other person gets blamed for putting these same ideas into my head.

So, none of my ideas are really my own, they’re just other people’s, exploiting me, supposedly. That’s how the theory goes. I am just the poor innocent pawn of these evil nasty exploiters. And I’m supposed to feel protected by this rather than insulted???

She didn’t write it, because… just look at her!

I don’t quite get this one, but I’ve seen it a lot. Apparently only people who look a certain way can write. Especially, people who look like we might be cognitively disabled, particularly severely cognitively disabled, can’t write, apparently. Not that I’m totally sure what that looks like, but I know I’ve been told that I look like it. So, all you have to do is look at us, and you know, that we didn’t really write what we wrote. Because people who look like us can’t write. End of story, no need for proof or anything.

She didn’t write it, because she can’t be educated enough to write like that.

There’s two assumptions in this. One, that all people of certain sorts didn’t get an education. That one isn’t true. Two, that all people get educated in the same way. That also isn’t true. Donna Williams had a really scattered education until adulthood, and she writes books. Other auties speak of being integrated in regular education even when they didn’t show standard signs of comprehension. And many of us learn in non-standard ways.

She didn’t write it, because she has a mental age of 18 months.

Being able to score well on an IQ test, and being able to write, are two different things. I know of many eloquent writers who scored anywhere from slightly low to very low on IQ tests. I know of several accomplished university students who only discovered they had low IQ scores after they had already gotten advanced degrees. The notion of “mental age” is a meaningless abstraction of the ability to do IQ tests in a certain way.

She didn’t write it, because she writes better than I can, but she’s a retard.

I’m using the offensive word ‘retard’ in here for a reason. It’s an appropriately offensive name for an appropriately offensive sociological category a lot of people get put into. I don’t happen to believe that anyone matches the thought that is in people’s head when they say ‘retard’, no matter how they do on IQ tests. But it is a thought they have in their heads, and it comes into play a lot in these situations. If a so-called ‘retard’ does better than they do at something, that throws their whole mental construct of the world off. So it’s easier to say that we are not really writing. But, no matter how many people think retard at us, it doesn’t mean that some of us can’t be more eloquent writers than some non-disabled people.

She uses an interpreter, so the interpreter is really the person doing the talking.

This happens to me a lot, because I use a cognitive interpreter. That means, someone who is intimately aware of my body language and use of language, as well as my background, who can take a posture and a word or two and elaborate it into what I really mean. I can tell the person at any time that they’ve gotten it wrong, but having such an interpreter can be vital to a communication process because of my trouble with word-finding and other people’s trouble with reading the cues I give off.

Of course, the job of interpreting for me also has a problem attached to it: Quite often the things that I am saying with my body language are things that people want to ignore, as much as possible. A good interpreter will be able to see those and elaborate on them. Like the time my interpreter walked into the room and saw me huddled into a corner terrified of the two staff who were trying to talk me into something, and who told them exactly why I seemed cooperative. They wanted her to leave the room, convinced she was putting words in my mouth (or at least as she said things they didn’t want to hear), even as I said “No, she’s right, she’s absolutely right, let her stay.”

There have even been times when people saw the interpreter, who told them rightly what was happening in my head underneath the appearance of passivity, as a threat, and insisted that I was just fine until the interpreter came in. If I get angry at that, my anger is a sign of the interpreter’s “disruptive” presence, and they try to get the interpreter to leave so they can badger me into submission in peace, or something.

Another problem is the invisibility of my body language and other subtle signals to most non-autistic people. Because they can’t see me as having body language, I am assumed to have none, and the interpreter is assumed to be pulling interpretations out of thin air. Rather than, the interpreter can see what signals I send and is correctly interpreting them. Obviously, if particular non-autistic people can’t see my body language, then nobody can. Or something.

At any rate, when I use an interpreter, what the interpreter says is often not believed, even though the interpreter is often telling them exactly what I am thinking, and even though I always tell the interpreter if she’s getting something wrong.

* * * * * Anyway, I wrote this as an outgrowth of one of the comments on my last post. Someone had asked me, “Why is it that people don’t listen to us about things like how we type?” I am pretty sure the answer lies in the above: They don’t think that we have anything to say, and they don’t think that we actually wrote anything, therefore there’s no way we could have written anything worth listening to, at that.

The “right” to freedom from disagreement.

While I was approving comments today (and marking half the comments I got as spam, ugh) I came across a comment on one of my older entries, Suicide and Autism Severity. The commenter said that the person I was disagreeing with in that entry has done a lot for our community, and that the amount of people who see that person as an “easy target” therefore demonstrates an ingrained fear of success and were the “angrier” autistics.

I’ve already covered the way people mischaracterize me as “angry” as if it’s a personality trait, in a post called On the “angry” nature of my writing. But I’m not sure I’ve ever covered this interesting phenomenon whereby your contributions (real or imaginary) to a community are supposed to make you immune to disagreement.

I’m going to quote from Jane Meyerding’s excellent “snippet” called Discourse (I encourage people to follow that link and read the whole thing, it’s a really important statement):

I see this as part of the “psychologizing” of the culture. In the U.S., it used to be accepted as part of the democractic process — a necessary part of that process — for people to have and to discuss a variety of opinions/perspectives on any given topic. But now, psychology has replaced civil/political culture to such an extent that the primary objective is “do not hurt anybody’s feelings.” And if you express an opinion, you are seen as “putting down” (and thereby hurting the feelings of) anybody who does not agree with you.

The assumption seems to be that people are so fragile (in psychic terms) that they will be damaged by having their feelings hurt — and that their feelings will be hurt by contact with anything that does not “validate” them in every way.

I’ve never found anyone I totally agree with, nor anyone I totally disagree with. Given the complexity of human beings, this makes sense. To me, most people occupy some continuum of agreement and disagreement on various specific issues. Moreover, if I disagree with you on one thing, and I also disagree with you on another thing, that does not mean that the two points of disagreement are connected to each other.

I have, however, been told, in reference to many different people, “Please stop saying these things. [Insert name here] has contributed so much to our community. I don’t think it’s fair of you to disagree with things they have written or done. [Although “disagree with things they have written or done” is often replaced by “attack them”, as if disagreement is attack.] Look how much they have contributed.”

I don’t get this. Everyone makes mistakes. Everyone. If people are not able to voice disagreement, whether correct or incorrect, then how on earth are the mistakes going to get questioned? If all disagreement suddenly becomes an attack on the person, and people who have “contributed a lot” (in some people’s minds, since the value of various contributions can be perceived very differently depending on who is involved) are conferred some kind of immunity to disagreement, then what exactly is going to happen?

Several years ago, I wrote an article about autism “experts”. The article stimulated debate in an autism forum. Some people agreed with it, and some people didn’t. Moreover, some people’s points of “agreement” seemed more valid than others, as well as some people’s points of “disagreement”. But I was glad that it was getting people to talk about those things. That was my goal as a writer at the time, and I considered it a compliment that they were taking me seriously enough to talk about these things in a forum where I only lurked, not posted.

Then, it happened. Someone invoked, not my “contributions” to the community, but my “fragility”. They said I’d put up with enough from the NT world and that I didn’t need people “attacking” me like this.

That was the first response I took offense to. They were effectively saying that I should not be taken seriously as a writer. That it was enough that I wrote, and people should either agree with me or shut up. That seemed very wrong, and still does.

M.J. Carley said that most “low functioning” autistics are not self-aware enough to consider suicide. I believe him to be wrong. I stated my reasons why. This is not considering him, the person, an easy target.

The only way in which this could be conceivably argued is something like, “I was on the GRASP website looking to see if a particular copyrighted article from autistics.org had been removed yet. It hadn’t. Then in the same section I saw these new articles, so I decided to read them, and then I came across this statement, and responded to it.” And I have to say, that’s really stretching things. The fact that I have ongoing copyright problems with GRASP and the fact that I disagreed with a statement are not related except in the sense of how I first came by the statement. If I’d come by the same statement, made by any other person, I would have responded the exact same way.

(By the way, if any GRASP people are reading this, seriously, linking to articles is fine, copying them wholesale without permission is not fine, and this goes for anybody’s articles, not just mine — I’m talking about in particular the “Theory of Mind” article from autistics.org. One of the authors is working under a pseudonym, and two including that one have not been involved much (one not at all) in the autistic community during the time when you put up the site. You need permission from all the authors to copy it. Also, last time I checked my own articles that you’d copied are not linked, but are still available on the site and hence through search engines. I’m fine, as I said, with you linking to those articles on autistics.org, but I would prefer if you did not keep copies on your website, even without linking.)

I can see how it’s easy to see all disagreement with a person’s views, as “targeting” that person, and as somehow related. It’s just not true, though. I once ran into someone who viewed disagreement, or even questions that might indicate disagreement, as hostility. I tried to find out why, and she said that she’d experienced a lot of hostility that week, therefore my disagreement and my questions (which were mainly on the order of “Uh… what did I do wrong??”) were also hostility.

This attitude when held by or about someone with power seemed, and still seems, dangerous to me. When Larry Arnold disagrees with Michelle Dawson on whether there’s a difference between autism and Asperger’s, it’s simply not the same thing as when Lenny Schafer (who agrees with Michelle Dawson that there’s a difference, but disagrees on what the difference is) launches an all-out smear campaign on Michelle Dawson that has nothing to do with her views or actions and everything to do with proving she’s not really autistic.

It would be wrong for me to tell Larry, “Look at all Michelle has done for our community. I think you and Lenny Schafer are just angry people looking for an easy target.”

And it’s wrong (both inaccurate and questionably ethical) to tell me the same for disagreeing on a point of opinion with Carley. Nobody has a right to freedom from disagreement.

Suicide and autism ‘severity’

I recently engaged in a private conversation with someone, where we were discussing various stereotypes of the ‘ends’ of the autistic ‘spectrum’. One thing I brought up was that someone had once told me that only ‘high functioning’ people consider or commit suicide.

Given this conversation the other day, it was a little stunning to see a similar statement in an article that is supposedly about ending bias based on ‘functioning level’. The article is called Calling a Truce in the Spectrum “Wars”, by Michael John Carley. Here is the statement:

The problems people face aren’t lessened or heightened by “placement” on the spectrum. They are just different. Think about it: the higher the functioning level, the more the potential for awareness increases. So, I’m certain that when all the facts are in, the higher suicide rates will line up along the spectrum in a pattern that mirrors functioning level. Severely-affected folks aren’t generally self-aware enough to want to consider suicide.

I have known many autistic people who were considered severely affected and considered suicide. I certainly considered suicide when I was labeled severely affected. I have read things by many autistic people who attempted suicide, albeit sometimes ineptly, while labeled low-functioning and severely mentally retarded and so forth. One of the common reasons was not having our awareness of the world recognized, having it assumed that we were not “self-aware”, and knowing what the future had in store based on other people’s treatment of us.

Some of our suicide attempts are so inept that people don’t realize they’re suicide attempts. Some of my head-banging at a certain point was because I thought if I did that long enough I’d die from it. I have taken small amounts of pills honestly thinking they were enough to kill me. I know of an autistic person, who was labeled low-functioning at the time, who tried to fight taking his migraine meds thinking that maybe the migraines would kill him. Do any of these get classified as suicide attempts? Not really.

Which leads me to the question: How are the suicide rates in autistic people, particularly those without a communication system that others understand, measured?

When an autistic person “wanders off” and dies in traffic or of exposure, or “accidentally” drowns, or any of a number of other unpleasant deaths, how does anyone know this was not deliberate? I mean, it can never be known one way or the other. But why does everyone assume that some of us are simply incapable of even conceiving of suicide, and that they can tell, by sight, which ones we are?

I don’t think a suicide rate will ever be able to be measured, because most such deaths, like many of our actions, will be ruled accidental, not possibly having anything to do with conscious will or decision. And some of them will be accidental, but some of them will be suicide.

I do not say this because I think autism is a good reason to kill yourself. But I would be a fool not to acknowledge how hard society makes it to live a good life and imagine a good future for yourself when you are an autistic person. The pressures are very real. The pressure to see your life as lesser and not worth living is very real too. And it does a disservice to those labeled low-functioning to say that they/we/whoever-is-in-that-category-at-the-moment are going to be automatically less self-aware, less capable of thinking of suicide. (As far as self-awareness goes, it seems independent of ‘functioning level’ as far as I can tell. I also don’t think that full self-awareness leads to suicidality.)

This is not an attempt to engage in the “suffering competitions” that Michael John Carley is writing about. It’s more to say, a lot of ideas about those labeled low-functioning or severe, are not accurate, and being regarded the way Carley regards some people, even though he clearly does so with no malice, is part of what causes some people’s suffering to begin with. I suspect the suicide rates, as well for that matter as the ‘self-awareness’ rates, are similar across the ‘spectrum’, except that some people will be unable to complete suicide due to lack of knowledge of how to do it or lack of control over one’s own actions. When some of us despair, our actions are not considered the result of despair, but merely inexplicable behavior problems, or “accidents,” or other things like that. This does not mean we are any less capable of despair than the next person.

I agree with Carley that we should not be fighting based on “functioning level”. But at the same time, as long as “high functioning” people are going to be misrepresented one way, and “low functioning” people are going to be misrepresented another (that Carley actively engages in), there is going to be unnecessary friction.

Why do you think I must want to be like you?

[I can now tell from the first comment that people who do not want all autistics to be of the same general type may take offense at the question. If you’re not doing this, you’re not the person I’m asking the question of. There are plenty of autistic people who do think that all other autistic people want to be roughly like them.]

This was the question I was asking when I wrote The Oak Manifesto. But it was not just a question directed at non-autistic people.

Non-autistic people do frequently hold the opinion that everyone must want to be like them. That, in fact, those of us who think non-autistic people do a good enough job being non-autistic but that we’d rather be autistic, are just repressed, in denial, hiding something from ourselves. Many autistic people have written and spoken eloquently about why these opinions about us are false.

But few autistic people have taken on the same opinion when held by autistic people about their own — real or perceived — category of autistic people. It is taken as a given that certain ways of being autistic are just self-evidently better.

When I was a child, my life was being directed by those around me — without knowing it, just as “what people should do” — towards the more valued category of autie. This is not how they saw it of course, not in those terms. They saw it as being all that I could be and fulfilling my potential. But I was being guided in the direction that, unchecked, leads to the “‘valuable’ and geeky even if socially inept” sort of person.

Puberty is when among other things your brain shifts around to its adult form. If my real potential lay where everyone thought it did, I suspect my brain would have shifted more in that direction. It had its own ideas about who I should be, though, and shifted in such unpredicted ways that not even I could fully recognize myself. In hindsight, though, even as a kid I saw things going very wrong that nobody else saw and I suspect the drastic shift was partly about righting those wrongs and putting me on the course I was meant to be on. Not that any of us recognized that at the time.

At any rate, it has become more apparent over time that I am who and what I am supposed to be. (In at least four dimensions, for those who view that in only three, leave out time, and assume stagnation is implied.) Right now, I am no more meant to be the stereotype of “HFA/AS” than I am meant to be non-autistic. I stand a better chance of becoming that stereotype than I do of becoming non-autistic, but so far there is little sign of either one happening.

There is an increasingly common view among autistics that I am just an aspie (I’ll use that term within this entry as a shorthand code word for that stereotype, apologies to those who use it differently) with “co-morbid conditions” making me “low-functioning” but which could be cured to release my inner aspie. That basically I am an aspie with defects. By this viewpoint, I could not possibly object to curation because it’s not autism they want to remove, just co-morbidities. Then I could be healthy and happy. Like they are.

The first thing I object to is the term co-morbid. That term implies a negative condition going along with another negative condition. It puts all conditions described, including autism (that’s the “co-” part), in a negative light and a highly medical perspective. It simply does not belong in use here.

The root of my objection, though, will be familiar to most autistic people. Autistic people are not just non-autistic people with good things taken away or bad things added. We would lose things deeper than personality if it were possible for us to become non-autistic. Non-autistic people think often, though, “All cure would mean is taking away these bad things, what’s the fuss?”

Well I simply am not an aspie stereotype with good things taken away or bad things added. If I ever became an aspie stereotype I would lose things that are deep down and important to me. Spending my time aping that stereotype (if possible at all) would be just as draining to me as passing for non-autistic is for people who can manage that.

By this I am not saying that “aspie stereotype is to my kind of autistic as non-autistic is to autistic”. I have far more in common in the areas that the word autistic has to do with, far more, with any kind of autistic person, than I do with the average non-autistic person. But there are different sorts of autistic people, too, and we do not benefit from being forced to act like each other or become each other.

By different sorts, I do not mean the traditional diagnostic guidelines. I certainly do not mean functioning level. I do not mean differences of opinion (sorry all who try to claim this, but “wanting cure” is not and will never be a true subtype of autism, it’s an opinion that crosses all subtypes, as does its opposite). I mean something deeper and harder to define and all but unrecognized by autism professionals.

I mean the reason that Joel Smith and I could instantly comprehend each other’s body language and thought patterns without having met before. I mean why Laura Tisoncik can similarly read Larry Bissonnette very easily, why Donna Williams said she and Jim Sinclair had something in common that not all auties do.

I mean why I can identify strongly with the writing and mannerisms and general patterns of several autistic people, and less with others, who might make more sense to each other than to me. These are reflective of some of the genuine similarities and differences between us, and they cross all official lines of categorization.

You can’t unwrap all these supposedly “co-morbid” conditions from me and release my inner aspie, any more than you can unwrap autism from any autistic person and release their inner non-autistic person. You can certainly look beyond your assumptions about appearances and perhaps see something far different than you initially realized, but that is not the same as us really having an inner NT or something.

Of course, you could divide me up that way. It would be really easy. You could say, “Okay, this person has symptoms of Tourette’s, catatonia, OCD, stamina issues, migraines, seizures, central pain, self-injurious behavior, and fill-in-the-blank for pages.” You could medicalize every single part of me but what you deemed the acceptable, autistic part, and you could try really hard to “fix” all those things (or in some cases imagined things) to release my inner aspie. But why are you so sure I have an inner aspie to begin with? And why are you so sure some of those things you’re trying to remove aren’t attached? (Here’s where I get told I’m advocating no medication for seizures, I bet. No.)

I’m saying the above simply because I know one of the common replies to this kind of post is “You must only be autistic and not have these other problems and just don’t understand how difficult it is, etc.” No. I just happen to view myself very differently than some other people with the same string of diagnoses and potential diagnoses. Don’t ever confuse viewpoints with diagnostics. So many people who remember that when it comes to being autistic and having viewpoints against cure, forget it when it comes to being the kind of autistic that everyone wants to turn into a different kind of autistic.

So no — to people who believe this sort of thing — I have no particular desire to be like you. No more, perhaps, than your desire to be like me, that you make so clear in your assumptions that it’s just plain better to be like you. I’m sure you’ve said similar words before, to non-autistic people. It’s also true that autistic people can convey similar concepts (words or not) to each other, as I am doing to you.

I will go through my life trying my best to be whoever I am meant to be. Who I am meant to be has often conflicted with the wishes of others, with the false constructs of proper lives that people’s minds come up with, with the values of any given society, and with many other things, not through any desire for conflict, but because of a steady and unyielding push in directions that are perhaps less traveled and less valued. This is not something I chose but it is not wrong. I am connected to the rest of the world, and I have a particular place in it, and I will do my best to be in that place, wherever it moves. The things I am saying here are not limited to me, nor am I claiming perfection or lack of struggle or hardship, merely that there are many roles to fill in the world and what people commonly think of as what people need to be doing is not always what we need to be doing.

Right now, my place is not to be an aspie stereotype, any more than it is to be a non-autistic person. Both have been expected of me at times, but neither has been all that forthcoming in the general plan of things.

Meanwhile, the way I am, the way all of us are, has a point to it. The point is not to make all autistics into copies of the ideal autistic any more than it is to make us into copies of the ideal non-autistic. We are different from each other for the same reason we are different from non-autistic people. And as usual, difference does not mean we need to be fixed or should long to be like those who think we automatically should want to be like them.