Category Archives: Mental Age

Tube Love

Drawing of a GJ feeding tube.

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
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.


Shrinking us down.


I’ve noticed a few things where I know what I’m seeing but I’m not sure quite what to call it.

I keep coming back to the reactions to “In My Language” (which, remember, I didn’t know would get more than a few people even viewing it, I expected no wider an audience than any of my other videos). As I’ve said countless times before,, I made it in response to the dehumanization of a girl with severe cerebral palsy. I made it to address a problem that affects not only autistic people or other disabled people, but also anyone whose language is considered lesser than the dominant language. Among autistic people, I did not mean it to be specifically about non-speaking auties, but about all auties whose communication and interaction is not recognized unless we speak what is essentially a foreign language to us — no matter how well or how poorly, or in what manner, we speak that foreign language. Language was after all at least as foreign to me, if not more so, when I spoke, and my communication through music, art, and my natural interactions with my surroundings was largely ignored and ridiculed at least as badly then as now. It was also about people, autistic and non-autistic, whose way of thinking is so different that it becomes regarded as not really thought at all, and the people thinking that way ending up thrown away and discarded as defective, “crazy”, or “vegetables”, or even “not having personhood”. And it’s about the focus on particular dominant kinds of thought and language as the only real ones or the only desirable ones, and everyone who differs, biologically or culturally, becoming automatically inferior.

That’s a pretty wide scope, and covers a lot of things that a lot of people don’t want to have to think about, or find difficult to think about.

Maybe that’s why it’s been packaged as “non-verbal autistic woman lets us into her world”, despite my constant protestations both in the video and out of it, that it’s not about that. It’s not about one individual person, it’s about a broader set of issues. It would be like saying that because I’m a woman then what I have to say only applies to women.

But if all I am doing is talking about my experience as an autistic person, then that’s all anyone has to take out of it. They don’t have to change or acknowledge much of anything, and if they do acknowledge anything, they will be acknowledging it about as narrow a group as possible. If not only me, then only me and other people who share a particular trait or two in common with me. No wider context need be looked at, the context has all been jettisoned already with the packaging of this as merely an individual story.

Something similar happens with the psychologizing of self-advocacy. Instead of being about people noticing and trying to correct injustices in the world around us, it becomes about people being driven by specific internal and individual psychological forces to doing this kind of thing. It again becomes really easy to dismiss what someone is actually advocating for, if you can turn it around and make it all about them, their supposed desire for attention or self-aggrandizement or whatever. I’ve seen these accusations leveled not only against me but against Larry Arnold, Donna Williams, Michelle Dawson, Temple Grandin, and nearly any other autie who’s received any degree of media attention, no matter what our true reasons for it (or whether we’ve even sought it out, or for what reasons we’ve sought it out if we have sought it out). Whether people agree with me or Larry or Donna or Michelle or Temple or any other autie is irrelevant, the problem is that gossip-fodder becomes more important to people than the substance of what any of us are saying, doing, or trying to accomplish. If you focus constantly upon our psychological motivations you can ignore the injustices that each one of us tries to bring to light.

The same thing, by the way, happens to autistic people who end up using some more direct and violent methods of asserting their rights or personhood. People who self-injure or attack other people or destroy property are said to merely be acting on pathological behavior, possibly entirely biological (mine was once blamed on “septal rage syndrome”, another time blamed on poor functioning of my prefrontal cortex), certainly tied to the “pathology” of being autistic in and of itself, and the idea that we might be reacting to real injustices the same way anyone else might when put in our position, is ignored entirely. I knew a girl who tried to pull the (abusive) staff off of me in a mental institution and all they did was regard her as manic and psychotic. Another girl had organized ward rebellions in a different mental institution and gotten the label of borderline personality for her efforts. And I went to school with an autistic girl who’d been labeled oppositional-defiant for organizing a protest at her previous and highly abusive school. This is not to say violence is the best way of handling these problems (or else I would still be handling problems this way, which I don’t), but you can’t divorce it from the situation and act like it’s just an individual pathology borne of mysterious internal forces. Or just people who have the supposed character trait of just being “angry” or “unable to let go of the past” or some other nonsense of that nature.

All of this psychologizing conveniently (whether intended or not) draws on the stereotype of autistic people as fundamentally selfish, self-contained, and self-centered (after all, autism literally means “selfism”). Never mind that some of the most selfless people I’ve known have been autistic (not that we have a corner on that or special powers in this regard or anything). Never mind that most autistic people I know are caring and empathetic about people besides ourselves, or else we wouldn’t be doing the advocacy work, whether in public or behind the scenes, that we’re always doing. We are supposed to do things only for the fulfillment of internal, psychological desires and needs. And we are supposed to stay in the role of only speaking about our own situations.

This ties into our role as self-narrating zoo exhibits and nothing more than that. I have a friend who rarely even reveals herself as autistic for fear that she will be asked to either tell her life story or educate parents, and be regarded as selfish and not fulfilling her natural role in society if she doesn’t do these things (and I’ve been told not only those things, but that as an autistic person I have no right to privacy and that if I believe in privacy then I must not be autistic!). When I say things like this, people think I’m against educating people about what it’s like to be autistic. I’m not, at all, or I wouldn’t do it so often. But it needs to be on our terms. Our lives are not textbooks for other people to pry open and read as they see fit. People have no intrinsic right to our lives and our self-dissections. For them to alternately insist, threaten, flatter, and wheedle us to give up those things to them is a problem, no matter how pure they think their motivations are. And anyone who does that should be aware that we can usually recognize the flattery and wheedling a mile away.

It’s also clear something’s wrong from what happens when we step out of that role. Telling our stories is not a particular threat to anyone’s sense of security, except those few who still want badly to believe that autistic people are by nature incapable of doing so. Actively stating ethical ideas (such as when I commented about the problems inherent in the idea of mental age) does step on some people’s toes, especially people who’re wrapped up in seeing themselves as “the good guys” and their idea of “goodness” being wrapped up in never doing anything wrong that one might have to change. Autistic people aren’t supposed to step on people’s toes. And when we do, what we have to say is psychologized, and it goes back to us supposedly being mean people who hate parents. If we’re mean people who hate parents (as someone will inevitably proclaim whenever we start talking ethics), then nobody has to listen to the substance of what we’ve got to say. And if we’re entirely self-narrating zoo exhibits, then the only substance of what we have to say is in the facts of how we function and nobody has to necessarily change their ethical behavior on that basis.

So what psychologizing our advocacy work, confining us to a role as self-narrating zoo exhibits, utilizing every disability stereotype possible, and confining our ethical statements to being “only about one person” or “only about autistic people” or “only about one kind of autistic people” or “letting people into our world of autism,” all have in common, is that they conveniently shrink the influence of our ideas and actions down to as few people as possible. It’s a way of missing the absolute most substantial aspects of what we have to say. If you read everything we write in terms of either our individual and psychological motivations or us “telling our own stories,” you never have to think that hard. And I think some people are doing this by accident, but for others (particularly those who know full well what’s at stake if people listen to us) it’s a very deliberate way of not listening to us, shrinking us down to size, and keeping us in our place.

No Good Guys or Bad Guys Here


I wrote most of this post a few days ago, but was really tired when I wrote it so I wanted to make sure I’d written something decent on the topic before I sent it out. I apologize for getting this out later than intended and therefore possibly prolonging something.

I’ve gotten a lot of responses to my “mental age” post acting like I’m accusing people of being something called bad parents or bad people. It’s interesting. I’ve seen a couple different bloggers recently complain about generalized things, and get castigated for not bringing up specific instances. I brought up specific instances of the usage of certain concepts I believe to be really harmful to people (in the real-life sense, not the hurt-feelings sense) and instead I’m being treated as if I’ve got something against a particular person, even been accused of attacking, bullying, etc.

Here’s my worldview on this sort of thing:

I don’t think there’s good guys and bad guys in the world. I think humanity is an interesting mix of good and bad and everything in between. I think every one of us does things right and every one of us does things wrong, some more than others in either direction, most of us a whole lot of both.

I do suspect there are people who see the world as good guys and bad guys. That worldview would be more likely to make a person panic when someone doesn’t like what they’re doing, thinking, or feeling. “Oh no, that person’s saying I’m a Bad Guy.”

No, that person’s saying you’re human. Being human doesn’t let you off the hook for doing something wrong. But doing something wrong doesn’t negate everything good you’ve ever done. And it’s important not to get your sense of self-worth all tied up in whether you’re doing good things, because that actually makes it harder to do the right thing. Because it makes you want to think you’re doing the right thing even when you’re not, so that you can keep up the belief you’re a good person. And when you want to think you’re doing the right thing even when you’re not, it’s easier to just go into denial when you screw up.

Not that I’m the ultimate arbiter of what’s right and wrong obviously. But I do mention when I see something I don’t think is right. The reason is that I’ve learned a lot when people mention stuff to me. I don’t always agree with them. Sometimes I very much don’t agree with them. Sometimes I disagree with them and later come to agree with them. Sometimes I can see their point right away. Someone on the comment thread seemed to have me pegged as someone who sees the whole world as my enemy, and I can pretty safely dismiss that one as someone who doesn’t know me.

But when someone yelled at me emphatically that I shouldn’t talk about my older brother like he wasn’t my older brother… I listened, and I learned, and I changed. If nobody said that I’d still be saying it. I was taught growing up explicitly that he wasn’t necessarily “older” than me, that he’d stopped maturing at the age of fifteen or so. This wasn’t true. It wasn’t real. But it’s a commonplace belief about certain kinds of people. And the people who taught me that belief learned it from someone else. And I learned it from them. And others doubtless learned it from me until I learned to stop saying things like that. But I didn’t learn it from having everyone “validate” my feelings about being the sibling of someone with a disability. I learned it from hearing the uncomfortable truth about what those views really mean.

I’ve noticed that most of us who talk about certain things like this being wrong, come from a position like mine: We know that everyone is prone to this stuff, we know that framing it in terms of good person/bad person, good parent/bad parent, isn’t useful. We know that we are susceptible to it as much as anyone. We know that it doesn’t make us “bad guys”. We know that even the defensiveness around it is something anyone can get prone to, depending on circumstances, and we know we’re not perfect either and never going to be, but we don’t think being imperfect in this regard means you stop trying or use the general fact of human imperfection as an excuse.

I mean… if I praise what someone has done, does that mean I like everything they’ve ever done? No. I have friends and allies online and offline that I disagree vigorously with on a number of important issues. A lot of the time we even talk about that stuff. And somehow it’s okay. Somehow when we do it it’s somehow known that this isn’t personal hostility going on.

I do, by the way, understand the motivation of wanting to validate the feelings of other parents. I don’t happen to think it’s worth the cost to people with disabilities (and particularly people with developmental disabilities, and more particularly people with — or assumed to have — intellectual disabilities, who bear the absolute worst brunt of these attitudes). The cost in actual impact on our lives of having these views spread around like this as if it’s normal to think these things about us. I also think there are ways to discuss this that say “Yeah this is normal, but it’s because we learned it somewhere, and this is a bad thing to have learned, and here’s why.”

In this case it’s not a matter of not understanding that some people want their feelings validated, it’s a matter of not agreeing that this is a good priority when there are other things that take priority first like the impact on people with developmental disabilities in general. Would I rather validate the feelings of parents who might feel really alone in thinking certain thoughts about their children? Or would I rather make sure that adults I know (and in some cases, am) who struggle to get taken seriously as workers, voters, sexual beings, people who can live on their own if they want, and adults in general, actually get taken seriously in that regard? It’s an easy choice to me.

It’s not that I don’t understand the feelings exist, or that people want their feelings validated. It’s that I think there are more important things in life than validating feelings that arise from harmful prejudice that directly impacts the lives of an entire group of people. And that in fact I find the whole goal of validating feelings that arise from harmful prejudices ethically questionable at best. There are plenty of better ways to discuss them, such as “How did we come to feel this way? What taught us these things? How might these things harm the people they’re directed at? Are these ideas really as innocent as they look?” And again I’m not exempt from that process of questioning.

But it’s hard to even have a discussion of this sort of thing, when at the slightest hint of saying that someone’s doing something I happen to think is wrong, then they’ll go “Oh no you’re calling me a Bad Guy” or something. Compounded by the fact that when it’s an autistic person and the other person involved happens to be a parent, you’ll hear “You’ve never been a parent” (even if you are a parent) and “You’re attacking parents!” or “You’re calling us bad parents!” (even if you’re not).

It’s also hard to have a discussion when there’s various unwritten rules of etiquette that can be invoked no matter what you do. If you post broadly and anonymously, you can be told you’re not producing sources to back up your claims, and that people don’t need to listen to you because of that. If you post specific examples, people can tell you you’re attacking a person, and a specific one at that. If you post publicly, you can be told you should’ve taken it to private email, and it’s again assumed that you only need to say this to one person. If you post privately, you can be told you’re being invasive. If people don’t listen to you, people can blame everything from your writing style to your presumed emotions about or motivations for the whole thing. And the whole thing can always be taken back to being about insults and personal feelings, on a level playing field, even when it’s about issues that affect some people more than others, on a direct and sometimes survival-based level, on a very topsy-turvy playing field indeed.

But bottom line: There’s no good guys or bad guys in my view of the world. It just doesn’t divide up that way. I don’t hold anyone exempt from the idea of doing things right, or doing things wrong, and I don’t see doing things wrong as meaning someone’s something called a “bad person,” or someone doing things right as meaning someone’s something called a “good person”. These are not useful concepts when dealing with me on these issues. There’s also, with regards to prejudices, no such thing as “the sort of person who wouldn’t do that”, and calling someone “the sort of person who would do that” (which is generally seen as some kind of ultimate insult) is another way of calling someone human. Anyone who thinks I’m calling people bad guys or the enemy for this, should probably look to their own views of what bad guys, good guys, and enemies mean.

Mental age is not acceptable.


In the posts about Ashley X some people have been referencing mental age again. Then Susan Senator posted the following (emphasis mine):

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

(I’m going to skip over the idea that Nat is not strong, not his own person, and that it’s not possible for him to go out into the world without his mother, and just focus on mental age here, but those are problems too.)

Please get straight what mental age actually is: It’s a myth. It says that if you score the same level on a certain test, that the “average” person of another age does, then your mind is really that age. That means that at the age of five my mental age was supposedly eight, at the age of fifteen it was supposedly eighteen, and at the age of twenty-two it was still supposedly eighteen. (Unless all my calculations are off.)

Do you really think that at five, I was somehow like an eight-year-old? I was not like any eight-year-old I’ve met. And at the ages of fifteen and twenty-two I was not like any eighteen-year-old I’ve met. I was eighteen when I was eighteen. Period. That’s the only time I was ever eighteen. Do I think differently than others? Yes. Am I a different age than I really am? No. Is it useful to construct me as if I am? No, it’s detrimental.

To say someone has the mind of a child (or an adult) because of a test score is like calling them a cat because they can’t fly. It’s nonsensical. It’s offensive. It’s responsible for some of the worst atrocities towards people with intellectual disabilities. And it’s not okay.

This is similar to those diagnostic parlor games that some autistic people like to play, while other autistic people are in the psychiatric system. Only this is idle musings about “mental age” instead of about the fine details of whether someone’s a sociopath or not. It’s just as bad. It does just as much damage. It should be accepted just as little. Mental age is not an okay construct to run around playing with. It’s a dangerous one, it costs adults our autonomy on a regular basis, it’s the basis for most of the restrictions placed on people with developmental disabilities, and it is not okay no matter what the excuse. People who purport to support the rights of people with developmental disabilities ought not to invoke it.

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):

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.

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.


The cover of _How To Suppress Women's Writing_ by Joanna Russ 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 meaning of power.


When I was a child, my family kept rabbits. We kept them in hutches in the backyard. They rarely got out to play or interact with anybody. They were confined to small hutches for their entire lives.

When I got older, and began to experience confinement myself, I began to see that this was wrong, but still did nothing for the rabbit who lived in a cage now high up in a tree to keep him away from the dog. I was still a child, but I was more aware that rabbits must not belong in small hutches in backyards.

As an adult, I came across information from the House Rabbit Society, which I’m now a member of. They said plainly that keeping a rabbit confined to a backyard hutch is like doing the same to a cat, or (proportionally increased) a human. They are a social species and solitary confinement is awful for them. They need room to run around and play and that is not possible in a hutch.

Nobody in our family bore the rabbits any malice. But each rabbit lived out their life in solitary confinement, and died in solitary confinement. I have experienced long-term solitary confinement, and it is not just the lack of socialization, but the lack of anything to do, the looking forward to only meals as the high point of the day, if you get those… it is highly unpleasant. It must be more unpleasant for a member of a prey species that depends on others of its kind for protection and survival at all times.

I talked to my parents about it when I found out. My mother said, “I had no idea. I had no idea.” My father said, when I brought up animal neglect, “I think I know what you are going to talk about. And… you had help [in neglecting the rabbit].”

I know that I’m now going to live forever with the fact that one animal that I could have done something about, spent his life and died in highly unpleasant circumstances, ones I know the unpleasantness of because I have been subjected to them, only he had no way out. That is the rabbit from when I was older. Aptly named, Reality.

When I was growing up, my parents told me stories about people who “let their rabbits run around the house and had them litter-box trained”. The idea always struck them as somewhat ludicrous, a little crazy. Again, they bore rabbits no malice. They would not view themselves as cruel to animals. And yet until I became old enough to learn about it, I absorbed some pretty strange values about animals (including that it was okay to dump a rabbit by the side of the road in his old age, and that, having spent his life in a cage, he would still live a wonderful life in the woods and not, say, starve or get eaten almost immediately).

a picture of a rabbit in a hutch

That is the meaning of power.

It is not comfortable. It is very possible to get defensive about it. It is scary to wake up to it. Much as Dave Hingsburger has described in Mourning Has Broken, it took a long time to fully realize what had happened.

When I posted this story elsewhere when I was finding out about this stuff, one person got very angry at me. He told me that he didn’t care if I’d found out about how things really were, it was too late, and he’d never trust me. I told him that I didn’t mind that because it might just be one of the consequences of having mistreated a rabbit, even as a kid. I will never, after all, get a chance to make his life any better, or to apologize to him. He’s dead.

I feel bad about it, but feeling bad won’t actually do anything, so I try to cut that off. What will do something is changing my ideas about power, about how I relate to the world. What will do something is telling other people what happened, what can happen, to rabbits everywhere. What will do something is applying this knowledge to other areas of my life.

There are a lot of myths about power.

One of the ones Hingsburger describes is the myth of not having any power, and therefore not being able to abuse that power. “Front line” staff often think they have no power because they are at the bottom of the staff hierarchy. But they are still above inmates/clients in the hierarchy. They can use their “powerlessness” as an excuse not to examine how they are treating other people. When I had power over that rabbit, I had power over almost nobody and nothing else in my life. But I still had power over that rabbit and I misused it, not out of intentional abuse but of neglect. (My father has pointed out that I had help. I did. But I still have some of the responsibility.)

Another myth about power (which I don’t know if it’s in Power Tools or not, because every time I buy a copy it gets snagged by staff and never returned) is that if you’re a good enough person, you will never misuse power. In fact, the more power you have over someone’s life, the more likely you will be to misuse it. Even if you love the person from the bottom of your heart.

In Same, Different, Human (a good review as well as a place to snag a Power Tools quote), Cal Montgomery says (quoting Hingsburger):

“I don’t believe that most people realize,” he tells us, that “they have power,” that “they routinely abuse that power,” that “their behaviour is invisible only to themselves,” and that “their responsibility isn’t diminished because they ‘didn’t mean to’ ” (Power Tools, p. 4). That’s not merely a description of most “direct care” staff; it’s a description of most people.

When I say that I bore the rabbit no malice, by the way, I am not trying to say that to make myself into a better person. I am saying that because it’s all the more horrifying to a lot of people the amount of damage we can do without meaning to, the amount of power we can wield without being consciously aware of it, the amount of evil things that can happen in the name of good or neutral intentions.

Some people will never force a rabbit to endure the suffering I forced (by neglect) on Reality. But everyone will be in some situation where they had power to change something bad and did not use it, or had power and misused it to do wrong. And many of us will be on the other end of it. My example is extreme. But it still happens that those without as much power in a given situation will have power exercised over them, and sometimes it will not be in a good way.

Recently I was describing the clinical words that are used on autistic people, and how there’s a difference between an adult with the power to define themselves, and a child looking up to caregivers and hearing them use certain definitions on them. Someone accused me of objectifying parents, of accusing him of abuse, and several other things.

Being aware of the power we have in the lives of others is not objectifying, and it is not necessarily an accusation of abuse. Abuse of power does not always result in the kind of abuse that people talk about as in “child abuse”.

But being unaware of power is a fast strategy to abusing it. I used to have a staff person who viewed all people as on an artificially equal plane when it came to power, she became terrified at even the mention of her having more power than some other people. The concept that, for instance, she can walk down the street without getting picked up by the cops, was more than she could take.

And she did abuse power, even though she was not abusive of people in a way that legally counts as abuse or anything like that, she was not an “abuser”. She abused power in subtle ways, controlled people, including people she loved, in subtle ways, and because she was unwilling to think about power, she was unable to curb her abuse of it. When people brought power up, she said, “I’m not that kind of person!” As if there is a specific kind of person without the potential to abuse power, and as if trying not to be “the kind of person who could abuse power” would magically make her someone who couldn’t.

When I talk about power, I am not dehumanizing anyone. People may disagree with me over how to use it, and I expect that. What surprises me still, for some reason, is the unwillingness to look at power and how it is used.

When the people with a lot of power over you are people that you know love you, screwups when it comes to power are worse. It was worse to hear from my father that I was “backsliding” when I could not do something anymore, than it was to hear it from professionals. It is worse when I am unable to type and my best friend screws something up in an attempt at translating what is happening for me, or screws up at FCing me, than when a random stranger screws something up. It is worse to hear certain things from people who love us. Their love does not make them immune to misuse (intentional or unintentional) of power, but it can make it more agonizing and problematic for us when the slipups happen.

Being a rabbit in a human household means that you have almost no ability to escape if the humans try to confine you. Being a human unable to talk back, or less able to talk back, or less able to filter information, means you have less ability to change certain ways you are being treated. A mother or father can go through years of their life innocently and lovingly describing their son, now a teenager, now an adult, as “having the mind of a 2-year-old child” and “utterly incapable of thought,” and he might be able to do very little to stop them. This is part of power too.

Misusing power does not always make you an “abuser,” nor does it always make you any less loving than the next person. But it is… a human thing to do. People do this. It happens. It doesn’t make it right. But if misusing power makes someone a bad person, then every last human being is a bad person, and I don’t think that is true. What is true is that we all have the potential to screw these things up, but we also have the potential to deal with those screwups. When I point these things out about power, it is not meant as a personal insult. It is only meant to point out things that happen to everyone. As I said in another post, it doesn’t mean I’m calling you a bad person, I’m just calling you human, and I don’t hold myself exempt from any of this.

I am also not trying to make anyone feel guilty. Feeling guilty is not useful after you’ve been reminded enough of what you’ve done, or have the potential to do. Figuring out what to do, is more useful.