So they’re trying to use genetic engineering to make sure there are fewer autistic people in the world. And they’d do it by offering parents the choice of a female embryo instead of male embryos.
This is stupid. This isn’t autism prevention. It’s boy prevention. If they’d done this, they’d have screened out my brother, who is not autistic. But then they’d have had me, and I am autistic.
But it’s also important to note how people think of things. Preventing autism is in many people’s minds preventing a thing. Preventing a disease. Instead of the reality that autism does not exist separate from autistic people, and it is people (both autistic and non-autistic, since screening out boys is hardly the same as screening out autistic people) who are being prevented here. And being prevented for a reason that has wholly to do with eugenics, the ability to avoid having certain kinds of children altogether. This isn’t about preventing a thing called autism but keeping the person the same, it’s about trying to make sure one kind of person doesn’t exist, and trying to make sure that another kind of person exists instead.
One highly disturbing thing, is that more than one person commenting on a UK article about this has said things along the lines of, “You people don’t know what you’re talking about. Visit a special school sometime. Then you’ll see why people like this need to be eliminated from the gene pool.”
Excuse me?????
This reminds me of a quote I’ve seen by Erik Nanstiel, about some pictures he saw on the web, including this one:
Can I ask something of all of you here? Did you like to see her like that? […] I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy. A crime. […] I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided. […] when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided? I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine” with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.
You may call this a blank stare, Mr. Nanstiel.
Other people, including people who have always liked my writing, have called it evidence that I shouldn’t be writing what I write, although they didn’t know they were talking about me at the time.
Many people in fact have considered it evidence that I didn’t write what I wrote at all.
I happen to call it something a little different.
I call it my face.
This photograph was taken minutes before I wrote this.
I’m not hiding any exploited autistic people in my apartment, I can assure you. This is what I look like.
My anonymity with regards to the website I wrote is going to disappear, at least in some places, in a few days, thanks to NPR’s rules about anonymity. I had a number of good reasons for staying anonymous (to people who wouldn’t recognize me anyway), too. One of the foremost is because of what I told Cal Montgomery about institutions: When they’re named, people think it’s an individual problem, at an individual institution. I did not intend Getting the Truth Out to include only myself (still don’t), but in the meantime I didn’t want it to be seen as just one person. Many of the perspectives I was including were the perspectives of all kinds of people, both named and unnamed on the site. The issues I raised affect all autistic people. I did not want it drowned out in the midst of interest in an individual story. I still don’t, so I’d ask anyone reading this not to make it into one.
But I don’t know how to make one of the points I’m making in this post while remaining anonymous, either.
In the months after writing that website, I read most of the reactions that were publicly available and some that were not. I read people I had always gotten along with just fine online, who had told me often that they really liked my writing, and so forth. And I read those same people saying things like “Look at this person, is this somebody we really want representing autistics?” “I don’t think someone who looked like that could possibly write something that complicated.” “This has got to be exploitation.” People remarked on everything from my posture to my facial structure to my fat to my story, and concluded such a person was not the sort of person who could write websites.
Other places, I read responses that started along the lines of “I worked in institutions…” “I worked in special education…” “I worked with severely handicapped children…” “My spouse works in these places…”. Then they continued with something along the lines of, “…with people who looked just like that, and I can tell you, authoritatively, that people like that…”. Then they finished along the lines of “…can’t think,” “…can’t write,” “…couldn’t do anything that complicated,” “…aren’t really happy with who they are,” “…will live out their lives in institutions and need constant care,” “…are a burden and not a lot else,” “…do not have a hope of contributing to society,” “…are not anything you’d enjoy or want to be.”
Perhaps now the reason for the title of my blog is clear. People who look like me are ballast-lives until proven otherwise, and sometimes even when “proven otherwise,” we really still are. I don’t happen to believe in Ballastexistenzen, or lebensunwertes Leben, or leeren Menschenhülsen. Whether “proven otherwise” or not, people are people, and I will always stick to that.
But nonetheless, I have been watching people’s reactions to my appearance since before I wrote that website. Still, reading the reactions has been enlightening. Even some people I know and like online hold these views. I’d suspected as much, but hoped not. And the views really seem to run, “Just look at these people, and all your worst prejudices will be confirmed, and you can run off and do bad things to these people or say bad things about these people, with a clear conscience.”
Just go into a special education school, watch students like me, and justify attempts to make sure no more of us will ever have to exist. Because surely watching us in a segregated setting is a wonderful way to get an appreciation for what our lives could be like in a society that accepts us the way it accepts others. Do the people saying that have any freaking clue how insulting that is to their students, their children? Do they have any clue how physically dangerous that is to everyone like their students or children?
No, I want you to look at us and throw your prejudices in the garbage can, stomp on them, and burn them. Instead of stomping on and burning our dignity and our future existence.
I want you to look at us, every one of us, and see the limitless beauty that is possible in the human race. I know it can be hard to see that when you are afraid of someone, or afraid of what it must be like to be that person, but you have to get out of the way and look past yourself to the other person.
I want you to look at every picture that is meant to reinforce your prejudices, and I want you to challenge those prejudices. I want you to be able to look at a black and white photograph of someone like me and see beauty, not a pathetic and pitiful wasted life. I want you to be able to meet disabled people, whether at a special ed school or elsewhere, and look at people, not your mentally projected statistics about our level of pain and suffering (or total lack of capacity thereof) in your estimation devoid of political or any other context.
Look at My Life Is A Gift, a website about Ben Boisot, and read through the writing about the value of all kinds of people. (I’ve seen his mother speak, and while I didn’t agree with everything she had to say, she had that fundamental principle of value down really well.) I’m sure if you saw a black and white photograph of him, or saw him in some dismal special ed class, you’d consider his life awful, too, and preferably to be prevented if possible. But it isn’t.
(Lest you think my life is some kind idealized fantasy-land, by the way, be aware that I’m going to probably puke again within minutes from the Neverending Migraine, and that I’m typing with the screen off because light causes excruciating pain at the moment, and staring at light sounds vaguely masochistic.)
But my underlying point remains the same: It’s wrong to tell people to go off and reinforce their most destructive prejudices by meeting or viewing photographs of people like me, people like my friends, or people like my old classmates. I know that people meet us and don’t really meet us, they just meet their warped perspectives of pitiful awful lives that drain everyone around them and should probably have been prevented to begin with. I know that people view pictures of us and view only what is in their own minds about what our appearances mean, and how they don’t want their children to be like those people. It is wrong to tell people to do this to us, and to themselves. It would be better to tell people to look at who we really are, our real value in the world, and reinforce that, instead of reinforcing people’s worst views of us. It would be better to say that preventing a whole kind of person is eugenics of the worst kind, rather than saying “Just look at them, you’ll see why it’s better that there aren’t more of them.”
Don’t believe for a minute that most of us don’t understand on one level or another what it means to plan for a world without people like us in it. Don’t believe for a minute that “Just look at them” is an argument against our existence, or that there are any legitimate arguments against our existence. And watch what you say about us, we could be listening. ;-)
Ballastexistenz 
I knew that was you on the site when I first visited it, but I was careful not to spread that information around, and I will continue to keep it to myself.
What a good point. It pertains, I think, to all of the children I wrote about in my Katie McCarron piece. Especially that last little boy, who had CP and Down Syndrome and so on and so forth. Nobody can tell me that his life doesn’t have value; he brought joy to everyone who came his way in that hospital.
When an otherwise able-bodied and able-minded person becomes depressed and starts down the path of suicidal ideation, his friends do their best to tell him that he is worth something, that his life matters. But the depression responds, “Just look at my life. There is no point in living. I should never have been born. I should kill myself.”
Perhaps our society is suicidal?
That’s the only reason I can think of for this constant desire to snuff out the lives of its members…
Thank you for doing what you did. It took intelligence and courage.
I am glad for Getting the Truth Out. I am glad that it challenges prejudices every day.
And I’ve always enjoyed your writing…there are a lot of ways you and I are quite different, but there are always kernels that had me going “THANK YOU! I’m NOT the only one!” And I personally don’t care if it comes from someone green with purple spots and their hands and feet reversed…the message matters. Even if they don’t want to hear it.
Thank you for speaking out in spite of the close minded.
Oh, and the anti eugenics part is very good too. I got hung up on the second part, picture with words next to it…happens, c’est la vie.
I kept thinking, and I still think it… and it’s so unfortunate…. “I’m glad Katie McCarron was a pretty girl.” and I also think, “She was too pretty to die.” (which is stupid of me)
If she had looked a little odd, it would have been harder to get sympathy for her death, if she had an unrepaired cleft palate (not likely in this country, but just imagine it) or she looked “sickly” or “deformed”… it would have been harder for people to see what was lost… which is really sad. The package is not what counts. But when eugenics gets in there, and works it’s way into people’s minds, the package become sooo important. Look at these aging starlets with their face-lifts and implants. I saw this woman from the middle-east who had this very pretty, if plastic and overly made up face… she was 80!!!! eighty!!! not 70, she was 80! It was freaky, and all the more so because, apparently they had never done her neck which was not hanging so much as all crepey, like really crinkled guaze. It didn’t match the face. She was really thin and was walking, slowly but with a straight back, in high-heels!
I don’t know if they are into eugenics that much in Lebanon, but this woman was weird…
I just saw an advertisement for a bed that was supposed to have an older couple sleeping in it. It looked like they took a couple of 30 year olds and airbrushed graying hair onto them. They were NOT older people at all, no way. It looked totally creepy.
My point… everyone can look weird, eveyone can be one of THOSE people, in a heartbeat (a stroke) or with age. Everyone is going blind and deaf and is getting “crippled.” Everyone get’s “ugly” and “smelly” eventually, no matter how fantastic they might think they are at 16 or 30….
I don’t know, to me you just look like you’ve got your mind on something; certainly not that you don’t have a mind. What people need is “more alike than different”. I see people who look a lot like you attending university or hanging out at coffee shops downtown. I’m thinking of the chapter in Up the Down Staircase where one student wrote “Can you guess by my handwriting if I’m white or not?” People need to see all different faces of autism, not just the ones who can look at the camera and smile.
I’m sorry about the damn migraines. We’ve known two people in our lives who had killer migraines, and one thing we genuinely admire you for is getting all this writing done while you’ve got one. jason recommends feverfew herb, also lying on your back with a towel rolled up behind your neck so your head is tilted back slightly…. don’t know if you’ve tried either of those.
Regarding the migraines, they’re constant (“neverending” was not hyperbole, I’ve had the same headache for a few years). If I only had them once in awhile, I could afford to drop everything and do nothing when I have one, and I might not even have a choice because my body would not be used to functioning with one. When they’re a long-term thing, you make other kinds of adjustments. Such as lugging around a barf bag (as well as Dramamine) and becoming incredibly casual about that. It’s not that they don’t affect my ability to do things at all, but they affect it much less than they would if they were occasional, not because of a difference in severity as much as acclimation.
As for my appearance, that’s what I think, too. I’ve never been able to see, in myself, the extreme difference that other people are constantly attributing to me. I’ve rarely been able to see it in other people, either, which leads to no end of patronizing explanations. (“You don’t unnnnderstaaaaaannnd.. She has de-mennnn-tia.”) But other people do tend to see it, in me and in others, and they make some seriously disturbing judgements on that basis. (I’ve been working on a blog post that discusses some of this.)
One thing I’ve been told though is that there’s certain slightly unusual (at least in combination) aspects of my facial and body structure that people, even if they don’t see it overtly (children always see it overtly, often comment on it loudly around me, and have done so since I was a child), sort of subliminally pick up on, and if they see any other evidence in that direction (such as posture, lack of speech, etc), put it together as meaning certain things about my mind. (That’s why there was a lot of “Does she have Down’s or something?” in people’s responses to my site, ridiculous as that may sound since I clearly don’t have Down’s. The answer, though, is “Or something,” and that’s also why people who’ve worked in large institutions responded so strongly to the pictures as a sign of incompetence. I’m sure they’ve worked with people who look like they could be my brothers or sisters, and most people who look like this have some amount of speech impairment.)
I didn’t put it together. I last looked at the ‘Getting the Truth Out’ site a few months ago (when I convinced my husband it was something I wanted him to see). I have sometimes thought about the woman on that site and wondered if she was writing anywhere else, since she obviously had so much to say that many of us need to hear. I didn’t figure out it was you.
I’m feeling very emotional as I write this. The comments on the Daily Mail site, especially the one in your post title, really bothered me. I’m also very moved by how much you personally have contributed to this argument. You have certainly inspired me to change some of my own assumptions and to try to challenge the prejudices of people I know.
Thank you so much.
It’s not surprising that Erik Nastaniel would say something like that. That’s his way to justify giving Lupron to his daughter. I wonder what he’ll do when his daughter becomes an autistic adult. Evidently, he wouldn’t care much for her.
I read somewhere (I think it was in the context of religion, which might be suggestive) that “disconfirmation strengthens belief”. It sometimes seems so.
What lies behind Mr. Nastaniel’s comment (btw, may we call him Mr. Nasty for short?) is the standard “normal person”‘s inability to understand the positive side of autism. To me, it is a gift from God, and something for which I’m duty bound to thank Him every day. But I long ago got tired–long before I knew I was on the spectrum–of telling family and others “I like being this way!” We have the gift of being different, of being able to see things and make connections “normal people” do not usually see and connect. We are, at least partly, immunized from false emotion and most forms of group-think. We are less connected to the physical and more connected to the spiritual. We get to link to the “still point of the turning world” more easily than “normal people” usually can. In place of human company we have the universe (and, if you are like me, religious) the Creator of the Universe for company. We lose the opportunity to participate in the normal rat race? We lose the opportunity to be used, abused and burned by other people who need to feed off us for the sake of their own emotional needs? Why should I be sorry to lose this when I have gained so many positive things in my life?
Of course, this may be overstating the case for numerous people who are on the spectrum. But statements such as Nastaniel’s are based on the false presumption that being different is by its nature a defect, and that being normal is by its nature a good thing. But until that fallacy is destroyed, we will always face attitudes like those you discuss in this post.
Perfect is the Creator, and therefore Perfect is everything, for everything is Created by Him: and if we see imperfection, it is but a sign of our own human limitations and something we need to seek to overcome. Blessed be He Who made me according to His Will.
You’re the second person today about which I have been informed that it wasn’t actually two different people I like, but one. So now all the admiration and respect I had for 2 people is focused in on one in your case. (And in the other I found out about, as well.)
Thank you for pushing me to challange assumptions.I respect your honesty and integrity.”Getting the truth out” was a great piece.
In seeing your picture, I was most struck by your beautiful eyes and the intensity of your gaze. (Maybe it’s my training as an artist, maybe it’s because I like looking at people)
My son tends to look vacant in most photos,giving no clue to the constant activity of his mind and emotions.The one eyed, two dimensinol photo image seldom presents a person. It’s so disturbing to me that parents can view their children as a one dimensional “Disorder”.
Again thank you.- Gayle
Oh, and by the way, I knew it was you all along. Very likely recognized your writing style, but I can’t remember. I just looked at it and said, “that’s her.”
Enough people have said what a well-written and thought-out piece this is that you don’t need my two-pence-worth on that score. I only wish my own blog was more properly thought out stuff and less waffling-on.
For the migraines though… I have ME which gives me pretty much constant headaches too, and like you I can’t just permananently drop everything and spend my life in a darkened room. One thing which has been a boon is my laptop with its flat screen (less glare) and also the “power saving settings”. Basically I can adjust the screen brightness, anywhere from Hallelujah Light Up The Room, to a very subtle Is It Off? Oh No It Isn’t, whereby you can see black text on a white background, but only just and not much else.
I did get a flat screen monitor as a present a few years back, so that was a huge improvement over what I used to have. But the contrast/brightness doesn’t go as low as yours does.
I actually tried at one point lying in a dark room indefinitely to see if my headaches would go away. I gave up after three days, when I realized that lying in there wasn’t changing much of anything, and that, yes, they were worse in lighted areas, but not so much worse that it was worth it to lie around in dark areas all the time.
The society of “needing help”/”having issues” tier and the society of “have it all together”/”we’re cool” tier is a real force of darkness for me. I have truly been trying to go about society as non-judgementally of others as possible and not just for “showing off”. I’ve been on several sides of this fence (or maybe it’s an octagon ::shrug::). ie: the judging others side, the being judged side, the mutual equal respect side etc etc.
One thing I detest is how others might treat a person who is actually being unjudgemental or treating someone on a perceived “lower tier” as an equal. They are frowned at etc etc. The person being “nice” is feeling guilty all the time. Society has messed up our feelings. Someone has memed this and it’s hard to dig out of the mind after being exposed to it.
Another thing I detest is the thinking that “I’m treating someone who is really at a lower tier than me as an equal means I’m bucking the trend and a righteous person”. This is not necessarily a righteous person either. To treat someone as equal sometimes means to stop babying them and secretly thinking one is more functional or better. Many get these thoughts and I’m aware of them too on occasion. We may all do. According to the world, neither of us are the lowest functioningest out there. There’s a pecking order for “victimhood” and “coolness” depending on the pity or brag strategies people use. (among others I think) Both of us have probably met all kinds of people on the spectrum in and out of institution environments. After spending time with someone else who one views as “charity”, they hopefully soon realize their error and see more value in another. But it seems the most simple and kindest thing to do is to simply treat a person with respect/hold them as equal value to oneself in the first place and just appreciate their being and spending time together and not think of having one’s time “wasted.” or “donated”. There may not be much value in time with another person, and it’s ok to release the thoughts or admit the problem and then apologize/move on etc.
One reason I bring this all up and what this made me think about is when I have been babied at work for revealing my disabilities…it seems they “overcompensate” by trying to be “overly nice and sweet” while secretly thinking, “this person is useless, I’m better than them and then, they eventually fire me…without a peep and feeling so guilty, and at a loss of face and avoidant, and scared even…all along it seems they have “feared” me and all that babying was akin to “nice rottweilter/doberman/doggie” etc. That distance created more fear, more misunderstanding and even when I was present, while we joked around, there were elephants in the room and issues and their own beliefs, embarassing ones socialally/inappropriate ones socially, they couldn’t confess to but felt. In a sense, I would have preferred a fight. A fight were one is not penalized for *gasp* fighting. Perhaps it could have been a performance related things, isolated and free of politics, unrigged etc. I don’t know, sometimes it takes a fight but one with boundaries. There are no boundaries and no more fights and so pressure builds to nuclear proportions it seems.
I’m glad to finally learn who created Getting the Truth Out. It’s a brilliant website. I never guessed it was by the same person who wrote this blog.
With regards to appearance, I think one common element of how neurotypical people funtion (being NT, I can’t say much about how others do) is a tendency to process body language on a subconcious level, which makes it easy to spot variations from the norm, and to categorize the more obvious ones, but difficult to analyze our assumptions. That’s why most people can spot a foreigner straight away, before even speaking to them. That’s why people with pervasive development differences are noticeable, even if there’s no clear physical feature. And that’s why people tend to stare if they can’t figure out what category this person is in. It’s an attempt to process the information.
I first began to conciously think about body language in a college acting class. The interesting thing was learning how much useful information about gender, authority, and all kinds of social power structures were carried in body language. The alarming thing is how many people respond automatically to certain signals. People can be controlled much more than I had expected if I was thinking about the messages being sent, and they didn’t. Explaining what was happening seemed to ‘break the spell’ and give them more control over their behavior.
Much of it is things one would logically disregard as trivial. The way a person sits, stands, moves their head, minor details of vocal inflection, all of this has no real bearing on if you should trust this person, or obey them, or if they’re factually correct. It has no relevance as to weither they should be allowed to ride public transportation, or be out in public at all. But if the subconcious is shouting “WRONG!” and the person doesn’t attempt to think about where their conclusion comes from, they can make a lot of hurtful and dangerous assumptions.
When I first can across the “Getting the Truth Out” site, I found it a powerful paradigm shift. And I was hoping that the young woman shown there would have other opportunities to express herself. When I look at your picture, I don’t see a vacant stare, I see someone pensive, perhaps lost in thought. Thank you for your constant challenge of stereotypes, and your generally thought-provoking writing.
Pingback: Ballastexistenz » Blog Archive » Eyeballs, redux.
Hmm, I wonder how much an autistic person’s physical appearance (not behaviour) affects whether we’re institutionalised or allowed to live at least physically in or close to society.
If the person’s physical appearance fits any of a number of appearances that have become medicalized in and of themselves, I suspect we’re more likely to end up institutionalized. (Even before people were using specific syndrome-type words for it, “unusual facial features” or “unusual physical features” were phrases to be found in my medical records from institutions.)
When I looked at the pictures on Getting the Truth Out I saw an obviously autistic person. Not an “empty” person, just someone who obviously had a lot in common with the various autistic kids I’ve met. I never saw them as empty either. It was obvious to me that there was so much going on in their minds. I didn’t necessarily know what they were thinking (though I understood them better than the NTs did) but I knew they were thinking. Similarly, the claim that animals don’t have emotions makes no sense to me. My cat is obviously grieving since my dog died. She hung around to watch the funeral and since then she’s been cuddling with us a lot, and just generally seems sad. It’s the same sort of thing. That picture of you looking at the blocks I interpreted as “autistic woman who likes to line up blocks”, not as “empty autistic staring at blocks” because it’s obvious you aren’t empty.
But I’ve learnt that discrimination requires turning off logical reasoning. For example, I wanted to do a monologue for my school about a lesbian, and was warned that if I did so people would assume I was gay (I’m actually asexual). That made no sense to me because the literature states that NTs develop the cognitive ability to understand pretending around 18 months, so wouldn’t they know that a person could pretend to be gay for a play? But apparently homophobia interferes with thinking logically about that scenario. Of course, that is no excuse for acting that way, just a possible explanation.
Another example is in the book Before and After Zachariah, Fern Kupfer, mother of Zach, mocks her husband saying something like the following:
“There is a reason for Zach’s crying. He’s hungry. He’s tired. He needs a diaper change. (He never says Zach cries because he’s severely brain damaged.) We know this: Zach never cries when we hold him and walk him.”
Obviously, Zach wants to be held and walked. That’s why he was crying, not “severe brain damage”! (Which technically wasn’t true, he actually had a recessive condition.)
I’m afraid I haven’t had the time keep up with your blog lately, or many other blogs for that matter, but I knew I wanted to read this slowly and without skimming the way I often do. I managed to set aside the time to sit down and read this and now I want to say thank you. Thank you for this and for your blog but most of all for “Getting The Truth Out”
I know it probably wasn’t easy for you to give up anonymity so thank you for that as well. I wish I knew how to express myself as well as you but I don’t think there is anything else I’ve read recently that makes me think as much as what you write.
Tying this back to your “eyeballs” post, I notice this:
If someone makes eye contact with you and you feel fear, that is made out to be your fault.
And if Erik Nanstiel look at a picture of you and all he can think about is “tragedy, crime, disability” and so forth — somehow that ends up being your fault too. I’d like to know: why is it your fault that his imagination is so limited? Why is it your fault that he feels fear when looking at a picture of you?
Miss A-
I am most grateful for the Getting the Truth Out website. It moved me more than anything I have read, heard, or seen regarding autism and individuals in its embrace.
Thank you for correcting any mistakes I made in its interpretation.
I am also very thankful that you have gone out of your way to attempt to enlighten some very confused parents along the way.
From the very core of my being,
Thank You
Asking permission to post the link to your blog to ASA. One of the newer posters (a parent or a grandparent) has just posted the link to Getting the Truth Out, and was wondering some things about you (well, the author of the site).
If you have to. I’m not fond of the idea of giving trolls who may be watching one more easy way to find me, it would mean yet more stuff to moderate.
I’ve replied, though, to the totally jumbled version of my story that was given there. (Yes, I most definitely was diagnosed as autistic when I first got there, the “childhood schizophrenia” thing started almost a year later when I was transferred to a very strange facility, and my parents and I were basically all threatened with some pretty serious stuff until we appeared to agree with the concept. The diagnosis in adulthood was a re-diagnosis, not a first-diagnosis. My special ed records have both labels on them.)
I work in special education and I honestly wish I could kick some of my peers asses. I work with kids. Kids with disabilities, yes, but just kids. Some like to dance. Some like to sing. Some like to play on the computer. Some bite me when they are angry. I try not to make them angry, but sometimes I miss when they are tired, stressed or just plain bored. I work with people who talk bout kids in front of their faces like they do not exist, and I cringe, and apologize later. Sometimes I just get mad. I take people to your blog in order to give them an idea of the amount of “possibility” my kids have- I hate to use that word, but I do believe that there are possibilities not being explored and limitations that are embraced, because it costs less, takes less energy and basically gives us the power—– but whatever. I work in a a state of balance, trying to do the good I can do, by enjoying the kids I work with, rather than expecting them to conform to sitting in a stupid desk all day, which is “proof” of inclusion. I “allow” kids who need to eat or drink to do so on their schedule. I have to answer to my boss for that. I laugh often and dance every day with my kids who love to dance. Because of that I am told that I am doing my job wrong.
Understand that SOME of us who work with kids with disabilities do not wish to be power brokers. Some of us truly enjoy kids in their various guises. Some kids are easier than others to “figure out” and it is our privelege to hang out with the “others” and see the world through their eyes.
Let me tell you a story- many years ago I worked with an autistic child who was in a mainstream school. Their day consisted of not talking to anyone but their aide- all communication was filtered through this person. They sat in the back of every regular English, math and computer class coloring teddy bears and doing rudimentary math. Because they were mostly quiet and compliant, they were deemed successful. When I worked with this kid I FREAKED. We did STUFF. We grew things in pots. We played real games. This kid started communicating with other teenagers for the first time. A year later this kid had their own greenhouse and supplied whatever was needed for whatever school event- and was “accepted” and celebrated for their achievements by their peers. (Not meant to sound condescending- believe me, the first time this kid said hi to a student in the hallway, you would have thought he had scored the winning touchdown in a football game there was so much joy.) This of course was after I told off a principal and then left my substitute position. (The two were exclusive, that was just the sequence- the principal eventually agreed with my idea that we build on strengths and interests and forget the easy sitting down coloring teddy bears crap.)
I just am unable to imagine myself being they type of person you describe, working with kids, and I hope that if I ever am, that I get the hell out of my job. While fighting for others takes a toll on my psyche, doing nothing seems like it would be even more soul sucking.
I hope I do not sound arrogant, either when i talk about what I do. I just want you to know that there are NT’s out there that do care, but they are often dismissed as bleeding hearts and often they just give up because they cannot see a way to make a meaningful difference without consequences. THey get burnt out, or just plaine burned by their supervisors and they leave. It is hard to be subversive every single day ———
I love your blog and I am so glad that I have read you.
If power problems could be solved only by people not wishing to have power, the world would be a lot simpler.
Thank you for your intelligence, wit and courage. It gives me hope. So much of Special Education is conceived to make life easier for those that provide it, not those who receive it. God bless you, and those like you.
-Fred Melamed, Actor, Film Maker, Father of two sons with autism.