Category Archives: rant

What’s your goal?

To parents and teachers of autistic children;

Or really, to anyone who is working with autistic children, I want to ask you. What’s your goal?

I’m not talking about the various individual goals you may be working on at any given time. I know for myself I can really only choose a small number of things to work on at a time, which means a lot of picking and choosing. I’m talking about the over-arching goal. The long-term goal. The goal that helps you choose what to work on and what to let go.

This has been something that’s been burbling around for a while now, in my head. I lurk in a few different autism spaces (not because I’m trying to be creepy, I’m just really more of a lurker than a participator no matter where I am), and I see parents asking for help or advice about various challenges they are facing with their children. Sometimes those questions are good, and sometimes those questions leave me raising my eyebrows as to why, exactly, a parent is choosing to fight that particular battle. I’m talking about questions like how to stop a child from stimming, or how to force a child to do a thing that obviously hurts them, or how to make them want to socialize when they’d clearly rather read.

At first I was just going to write about how these are bad questions, but a recent conversation I had in yet another autism space gave me a new way to frame things.

A parent was asking about the ethics of autistic adults to teaching autistic children. I don’t really think they had a solidly coherent argument, but it was mostly apparently about how we have to make autistic children modify their behavior, and autistic adults have the same behavior so can’t teach the modifications. They also brought up the “blind leading the blind” analogy.

I thought that was interesting. I like metaphors, so let’s look at this blind leading the blind thing, shall we? Only lets change that to the blind *teaching* the blind. We live in a society that simply assumes people can see. All sorts of important information about getting around in the world is conveyed visually, and is thus difficult or outright impossible for a blind person to make use of. As a seeing person, I can never understand what it is like to navigate the world while blind. I can read about it, study it, listen to blind people who describe their experiences, but I can never ever really understand. Only another blind person can.

So who is best to teach a young blind person how to navigate the world while blind? Seeing people who cannot understand, or blind people who understand the challenges, make personal use of the tools at their disposal, and have been through the learning process that the child is going through?

Of course, maybe that’s not your goal. Maybe your goal is to make it so that the blind person simply doesn’t look blind. So that anyone who looks at a blind person won’t know that they are doing so and maybe feel uncomfortable. Of course, this goal is frequently incompatible with said blind person actually being able to independently navigate and live in our society. It would involve taking important tools away from them and leaving them dependent on sighted people in a way that shouldn’t be necessary.

It seems painfully obvious to me that the goal should be “learn to navigate the world while blind.” Saying otherwise is simply absurd.

So how come when it comes to autistic children, the goal is so often “don’t look autistic” rather than “learn to live in/navigate the world while autistic”? There will be times when these goals blur together a bit, but there are also plenty of times when they are diametrically opposed. If you have a goal to stop your child from flapping their hands, why is that? What over-arching life-goal does it fit into – being able to navigate the world while autistic, or simply looking not-autistic?

I really hope your goal is to teach autistic children how best to live in the world while autistic. I really hope that you understand what that means – including things like making sure they have the tools to do so, even if it means their autism is visible. It also means including autistic adults – people who know what it’s like, who have experiences in what works and what doesn’t work, people who have been there and done that.

Overall, it’s something I really hope you keep in mind when you work with autistic children. Someday that autistic child is going to be an autistic adult. What’s your goal?

Make it a good one.

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Demonization

Search term post! Someone found my blog by searching for “why does society seek to dehumanize and demonize the mentally ill.” You know what? That’s a really good question. I mean, it happens really a lot, like when that lady wrote that letter calling an autistic boy a wild animal and telling his parents to euthanize him. It’s astounding how awful some people can be. How little empathy some people can have.

Let’s talk about one of my pet peeves. Actually, I think it’s more than a pet peeve, since it’s an attitude that is actively harmful. I call it the “it’s all your fault” syndrome. It’s that thing that causes people to say that since autistic people have trouble understanding typical people, it’s because we lack empathy (our fault). Yet since typical people have trouble understanding autistic people, it’s because we’re flawed (still our fault). If we get bored listening to a lot of mindless chatter, it just shows that we lack empathy. If someone else gets bored listening to us talk about our special interest, it also shows that we lack empathy.

See where this is going? Somehow it’s always our fault. Somehow, no matter who is confused or bored or whatever else, the fault is our differences or “lack of empathy” or whatever else.

I call bullshit.

Personally, I think everyone lacks empathy. I think empathy is not nearly so prevalent or so easy as people try to make it out to be. Thing is, most people can fake it. Most “empathy” seems to involve assuming people are like you. When you’re typical and many of your feelings and responses are typical or close to typical, this makes you “more empathic,” since your random guesses as to what other people are thinking or feeling are close to accurate. When you are not typical, when you think things and feel things that are distinctly different from what most people think and feel, then your guesses are going to go wild.

Yet all those typical people with their apparently amazing empathy somehow consistently fail to empathize with people on the autism spectrum. Why? Because we’re different. Because we aren’t like them, we don’t feel like them, we don’t think like them. However, admitting to their own failure in empathy is, apparently, anathema. No, they can’t do that. So instead they blame us. It’s our fault. It’s always our fault. If only we weren’t so different, you know?

Which is to say, I think people dehumanize and demonize the mentally ill due to a lack of empathy on their parts. They can’t understand us. And for some reason, this translates into a failure to accept us. I also think people have a really hard time with the idea that “normal” people can do bad things. So somehow “violent” and “mentally ill” have become synonymous is people’s minds. And because they can’t (or won’t) empathize with what it’s really like to be mentally ill and/or different, few people bother to challenge their own perceptions. The actual facts don’t really mean a lot to way too many people.

And honestly, this isn’t just about mental illness. People do this to physical illness and physical disability as well. I can see it any time I see people claiming that type 2 diabetes is always the sick person’s fault. I can see it whenever someone would rather say “gee, it sure was nice of that business to actually follow the law and put in a disabled entrance” rather than “disabled people might feel discriminated against when they’re told they have to enter in the back.” Or any time customer service people ignore anyone in a wheelchair, instead only serving or talking to able-bodied people. Or any time people say they’re all for equality, but really, it’s ok to pay disabled people less than minimum wage.

It’s all around us. It’s everywhere. It’s not ok and it’s frustrating and I don’t know how to fix it, but that doesn’t mean I’m going to ignore it.

Though I will say – just after writing this I saw this here video

So maybe it’s not ALL bad.

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Special Minimum Wage

So there’s this thing. It’s called “special minimum wage.” It’s part of the Fair Labor Standards Act, and it means that employers with a “special wage certificate” get to pay disabled people less than minimum wage. Some people call it a “loophole” but it is not. A loophole implies a method of evading the law. This is explicitly written into law – specifically, section 14(c) of the Fair Labor Standards Act.

In this country, disabled people are literally second class citizens, not always even allowed the right to work for a fair pay.

Not only that, but people really defend this. There is an assumption that being disabled, especially having a “severe” disability, means that you somehow cannot work. That you’ll require lots of hand holding and oversight and it means that it would be simply impossible to pay you the way everyone else is paid. The way non-disabled people are paid.

And we find ourselves in a position of needing to prove that we can work the same as everyone else before we’re even allowed to try, and companies have a financial incentive to make sure we can’t. Not always, but often enough. It shouldn’t happen at all, but it does.

And it’s not getting a lot of attention. Goodwill, an ostensibly non-profit organization that nonetheless has executive directors making huge salaries, regularly pays disabled employees less than minimum wage. Sometimes not even $1 per hour. You cannot tell me that Goodwill would not be able to employ disabled people if they paid us fairly – that’s so ludicrous I cannot even imagine how someone could say it with a straight face.

This article talks about another aspect of the issue. Michael Grice has cerebral palsy and uses a wheelchair. He used to work in marketing and as a customer service representative – jobs that don’t require significant physical ability. But now he’s working doing menial labor for ridiculously low wage. And it’s true that his disability means he does not do that job very well. So why can’t services find him a better placement, doing a thing he would be good at?

Well, I have no idea.

But instead he’s doing a job he’s poor at for wages that would be illegal for an able-bodied person. Yet people continue to justify “special minimum wage” with noises about how we just can’t employ disabled people the way we can employ able-bodied people. Because basic accommodations or placing people in jobs that cater to our strengths is, apparently, just too hard. This is why it is so important to create a culture where it is only natural and normal to see what a person’s strengths are, and to help us use those strengths. Because right now, not only do we not have that kind of culture, we have a culture where that is simply dismissed as not worth bothering with.

Oh, but there’s more. There are organizations that do this regularly. Sometimes I see people talking about how it’s important to try to buy american-made, if you can. That we shouldn’t support overseas sweatshop labor, even if it is cheaper. Yet right here in the US, we have companies employing large numbers of disabled workers with their special wage certificate, making and selling things like tablecloths or napkins or rugs or whatnot. The companies claim that they simply wouldn’t be able to employ so many workers if they had to actually pay a fair wage. A human wage. You know, a wage that would treat us as human beings equal under the law. People keep going after Goodwill, but Goodwill is far from the only company doing this. We need to attack the law that makes this legal, not a company that is (however skeevily) benefiting from this law.

The National Federation of the Blind has this to say about all that:

Although in recent times some sheltered workshops have begun to pay disabled workers the minimum wage or higher, other shops still claim that they would be unable to continue their operations and would have to fire their workers with disabilities if forced to pay the minimum wage.  This claim is demonstrably false. In addition to the revenue generated from the labor of the worker, these entities are primarily non-profit organizations that receive very lucrative federal contracts.  Even those workshops that are paying workers competitive wages should not have trouble maintaining their operations while remaining quite profitable; indeed, many are already maintaining successful business operations while paying competitive wages.

Equal rights needs to include everyone. And while I see lots of noise about equal rights for LGBT individuals, and how we also need to remember issues of race and voting rights, I’m not seeing much about this.

People who talk about intersectionality sometimes, occasionally, remember to include disability. But mostly we’re quietly ignored, left off to the side, not talked about or mentioned or even really noticed.

This has to stop. The idea that we’re sooo hard to employ needs to stop. Forcing us into jobs we’re bad at while ignoring our strengths needs to stop. This is not ok.

It is, please pardon my language, fucking bullshit.

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Rifts and Divisions

I am only on the fringes of autism communities, but even from way out here I can see that they have some serious problems. In this case, I am speaking specifically in terms of rifts. Huge, gaping chasms between different groups that only appear to be growing. There is tension and anger and hurt between autistic adults, parents of autistic children, various “experts” in the autism field, and sometimes even allistic friends of autistic people. These rifts are volatile enough to have driven at least one autistic blogger right out of autism communities entirely. These problems, and the ways many of us (including all the groups here) seem to be dealing with these rifts is really not helping.

Also, I am not immune. I have my own lines in the sand and I feel hurt and angry and frustrated when I see people cross them. I often feel alienated by parents and by experts and by people who are, in theory, supposed to be on my side – because we are all supposed to be on the same side, aren’t we? But it’s just not working that way. I want this post to be about the divisions themselves and my hope of reaching out and narrowing them, even if by a little bit, and I’m hoping my own hurts won’t impact this goal too much. However, I cannot guarantee that I will be able to keep them out.

Lately I have been talking to a friend of mine about erased and invisible I often feel. After writing Erasure, it came up that, despite so many of us making so much noise, we simply were not heard by much of the general public. People happily went on their way with no idea of what had happened with attitudes about Asperger’s and Adam Lanza. We tried to make our voices heard, but the general public was simply not listening. And I feel frustrated about this and I don’t know how to fix it.

I think that lots of people in the greater autism community feel this way. I doubt that I am the only blogger who feels like I am mostly shouting into the wind, and I have gathered that many parents feel the same way. It feels combative – that we have to fight the “experts” spreading hurtful and damaging information, we have to fight schools that don’t want to give accommodations, we have to fight employers, we have to fight misinformation, we have to keep on fighting and keep on shouting in order to be heard at all.

Only instead of this common frustration being a point of unification, it seems to be a point furthering the divisions, especially between parents of autistic children and adults on the spectrum. It’s like we think all the chairs at the table are filled, and there’s only one chair left, so only one group can have it. Autistic people often feel frustrated at being silenced, at how often people will talk about us without even considering talking to us, and we are trying so hard to be heard. Yet when I see autistic people say “we need to be included in the conversation too, please stop shutting us out” I often see parents reply “stop trying to exclude parents from the conversation! we need to speak for our children!”

It baffles me. Including autistic voices should not automatically mean excluding the voices of parents, so why do people take it that way? Ultimately, I think it comes down to the chair analogy. I think part of it is that feeling that there is only room for one more chair, and parents, understandably, want it for themselves. No one wants to be silenced. Also, I would not be surprised if there are autistic adults who *are* saying that parents should not be heard – and even that, I think, is about the chairs. If there’s only one chair left, it shouldn’t be surprising that autistic people want it, and believe that we have more of a right to it than parents or other groups, since we are the ones actually on the spectrum. And it doesn’t help that there are parents out there who explicitly state that we should not be allowed a voice at all. That we are either too disabled to contribute, or not sufficiently disabled to count.

This is a HUGE problem. In the end, we all want the same thing. We want the lives of people on the spectrum to be better. We want our futures to include opportunities, we don’t want to be told that we have no chance at happiness or friendships or relationships or whatever else. Yet instead of working together so we can all be heard, we turn against each other and yell our rage and our fear and our feelings of utter helplessness as though it’s each other’s fault.

And if I am utterly honest, I am sure that some of this comes down to the fact that a bunch of people with a social learning disorder are trying to build communities. I certainly don’t know how to build a community. I barely even know how to be IN a community. It’s awkward and it’s difficult and we’re making mistakes along the way.

Personally, I like the idea of building community. I think we have a better chance of being heard, of not being erased, if we can find a way to make noise together. And I think it would be even better if instead of fighting each other for the last chair left, we fought together to have more chairs so that we can ALL be heard. So that we ALL get to have a voice.

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Stop Saying That!

*side note: I wrote this quite recently in a moment of significant frustration. Instead of cleaning it up and removing all the feels from it, I’ve decided to leave it as is. Rough, disjoint, and full of frustration. I’m kind of not sure about this, as I seem to have some idea that I’m not supposed to actually show my feels (talk about them, sure. show them, not so much) but I’m trying it anyway.

Seriously, quit saying that I am the one who lacks empathy. Because I am TIRED of this.

Jess, of Diary of a Mom, is one of the few mom bloggers I read. I appreciate the fact that she makes an effort to bridge that gap between autistic adults and parents of autistic children. But, as shown in this post even she finds it to be somewhat remarkable to actually listen to an adult on the autism spectrum for insight into what it’s like to BE on the spectrum.

Even she admits that it had not occurred to her to look at things from her autistic daughter’s perspective. In the end, she is another parent who does a whole lot of talking to other parents, and not a lot of talking to us. I’m glad that she talks to us at all, don’t get me wrong. And she does try, she works on promoting the whole idea of talking to adults on the autism spectrum because, you know, we’re there and that’s a good thing. But still, when I’m read her blog I still find that I am Other. I am Them. She is talking to other parents, not to autistic adults. And then, if I stop to think about it, I realize that she is Them-ing a group of which her daughter is a part. The daughter on the autism spectrum, who she is working so hard to help, and create a world where her daughter can be who she is, but still I’m Them. I barely even know how to process this, but it just seems so messed up. And this is coming from a parent who WANTS autistic adults to be listened to, and not all parents want that.

And the comments… parents who had never even considered looking at things from their child’s perspective. Not even that they hadn’t bothered to do so yet, but it had not even occurred to them that it is a thing to do. And I am SO FRUSTRATED at that.

I regularly see parents claiming that they are their child’s voice, often when their child has significant communication difficulties. And you know what? You ARE your child’s voice. You are their primary advocate until your child can speak for themselves. How can you possibly claim to be able to do that if you never bother to stop and really try to see from your child’s perspective? If you want to understand someone, you have to look at their world from their point of view. You have to at least TRY.

You want to talk about people not understanding that other people are different than them? Look at yourselves before you go looking at me. Look at the people who don’t understand that when I say I don’t want to touch strangers, I actually mean I don’t want to touch strangers. Look at the people who insist that I am a puzzle without bothering to think about the impact that metaphor has on me and those like me. Look at the people who blame autistic people for our difficulty in understanding others, and then continue to blame autistic people for others difficulty in understanding us.

Yes, I need to be careful of this too. It’s true that I don’t understand people. But at least I am aware of my lack of understanding. I struggle. I really struggle. People are incredibly hard sometimes. But things like this just make it harder, so just fucking stop it already.

Stop misrepresenting what we say. Stop disregarding us. Stop pushing us out of our advocacy. Start noticing that we have things to say, and we are saying them, and we deserve to be heard! Parents, get out of your own heads for a few minutes at a time, and try to see things from your child’s point of view. And yes, it’ll be hard. We’re different from you, and many cannot communicate with you easily. We have impairments in that area. But this is where adults on the autism spectrum can help. We’ve been there. No, we do not know your child as well as you know your child. But we know what it’s like to be on the autism spectrum. I can tell you about myself and hope that some of it applies. I can tell you what I believe and what I feel and where I’m coming from and all you have to do is listen.

I see so many parents talking to other parents, and so little talking to adults on the spectrum.

Please just listen.

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Erasure

I think I want to attempt to talk a little bit about erasure. It is something that has sat around on the fringes of my mind and I’ve talked about subject matters that have been experiencing erasure, but I have never actually named it. Nor have I explicitly pointed at something, called it out as erasure, and said that it is not ok. But I want to do so now.

First of all, it seems worthwhile to talk a little bit about what erasure is. Oddly enough, while the word is used often enough in various activism spaces, I was not able to find anywhere giving a basic 101-level explanation of what it means when people use the word. So I am going to take a stab at it, largely based on how I see it getting used. Disclaimer: this is a very broad explanation coming from someone who is new to activism. Not everyone uses the word in exactly the same way, nor does everyone define it the same way. So as far as I have seen, erasure is basically metaphorically erasing something. Perhaps it is whitewashing history to leave out the parts we would rather not admit to, or quietly pretending that certain groups of people don’t/didn’t exist or matter. It is explicitly or implicitly creating silence around an issue or a history or a people (etc).

I recently read an article comparing people’s responses to James Holmes, Adam Lanza, and Dzhokhar Tsarnaev. By and large, I did actually agree with the article. It talked about how Tsarnaev’s actions have been labelled an “act of terror” while the actions of James Holmes and Adam Lanza were not. It talked about the different ways people have been judging large groups of people. Because Holmes and Lanza have names that American’s tend to find easy to pronounce and belonged to a religion that most Americans find familiar, we do not demonize the race or religion that they belong to. We use different words to describe them and make different assumptions and say different things.

While it would probably be possible to debate various points or conclusions that the article makes, overall I generally agree with the specific points about how we stereotype people of different races or religions. People who look different, sound different, believe different, and have different names.

Which brought up the question, why do I feel so ooky when I read that article? Where is this twisty, turny, unhappy feeling in my belly coming from? Then I realized – in not stating certain things that happened in response to Lanza, the article quietly implied that Lanza was an example of someone who is held responsible for his crimes independently of any group of which he is a part. That people simply did not demonize and hate a whole group of people due to his actions.

In reality, this is not how it happened.

There was very real ugliness in response to Lanza. Ugliness that prompted me and others to write about it in protest. It all seemed to start when news outlets implied a link between Asperger’s and violence, and implied that Lanza’s Asperger’s may have had something to do with what he did. From there, it all went to pot. People freely and happily demonized Asperger’s and aspies, and made ugly, hateful, and scary comments as such. People advocated violence against us. People yelled that we should all be locked away and the key be thrown away. There were people who, when finding that someone they are talking to is an aspie, would respond with “oh, like Adam Lanza?” There were aspies afraid to leave their homes for fear of violence and reprisals against them, for something they had nothing whatsoever to do with. People brought up the tired old empathy arguments, claiming that all aspies have no empathy and either implying our outright stating that this must make us all sociopaths. It was also broadened into demonizing mental illness in general, furthering the stigma and stereotypes.

It happened. It was scary and it was hurtful and it was bad. And this article is simply ignoring that entire history in order to make a point about race and religion. It is a point I agree with, but I am not ok with a very important history being ignored for the sake of that point. I am not ok with it being quietly but completely erased, leaving us with the quiet implication that when it came to Adam Lanza, nobody got hateful about an entire group of people, or implied (or outright stated) that aspies are more likely than others to be violent, or are continuing to do so.

It is true that Americans did not (and possibly could not) Other Lanza based on his race or his name or his religion. But they could, and they did, based on his neurology. If I wanted to, I could easily make my own point that no one is demonizing all allistic or neurotypical people based on Tsarnaev’s actions – but it would be wrong of me to ignore the impact that his name, his country of origin, and his religion is having. It is equally wrong to ignore the impact of neurology and how people will respond to that.

I also find myself wondering about why, or even how, it was omitted. I do not want to assume malevolence, but I am hard pressed to believe that the author was simply unaware of this history. It was not hidden or secret or difficult to find. It was all over the place. Even if it is simple obliviousness and nothing more malicious than that, it is still disturbing to me. Whether deliberate or not, there is still an undertone that the way aspies were maligned just doesn’t really matter. That it certainly doesn’t matter the same way that demonization based off race or religion matters. That we can go ahead and overlook it, even though it would be highly relevant in a conversation about how people will hate anything that is Other in this sort of situation. Regardless of how deliberate it was, there was definite bias here. This is not ok.

Don’t erase me. Don’t erase my history or my activism or my fear or my hurts. A whole group of people was blamed for the actions of one man. Do not forget it.

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person first vs. identity first

Picture by Landon Bryce of ThAutcast. Used with permission.

Identity language is an interesting and often tricky thing. It’s been on my list of things to write about since very near the start of this blog, but I never thought I had a sufficiently formed opinion to really be able to write about it.

An early instance of this coming up was in a forum I had been participating in on autism and Asperger’s. Someone started a thread saying that he strongly preferred person-first language. He wanted to be called a “person with aspergers” and he did not agree with or appreciate the current dominant trend in the autism community to go with identity-first language. I had not done a whole lot of thinking about it at that point and was really quite interested, so I asked a bunch of questions on the topic. Why is it important with this, but not with other things? Where is the line drawn? I don’t call myself a person with crafting, I call myself a crafter. Why is one ok and the other not?

Sadly, the discussion did not continue after that point. He apparently thought I was being nasty, was nasty back to me and there was no more talk. Since then the topic of how we refer to ourselves and just how surprisingly volatile a topic that can really be has been lurking around in the back of my head. I have read any number of blog posts on the subject and lurked in several different online discussions. I have noticed a few trends.

People on the autism spectrum usually, though not always, prefer identity first language – “autistic person” (aspie can also be used but I’ve noticed some pushback against that word in some circles. I have yet to figure out what’s wrong with it, though). However, other people (sometimes people on the spectrum but often allistic friends, family, or professionals) prefer person-first language – “person with autism.” It’s the justifications of these two choices that I find particularly interesting.

There was a thread on ThAutcast’s facebook page that had people talking about this, and there were a few really interesting posts on both sides of the debate.

People who are in favor of person-first language usually claim that it is more respectful to phrase things that way. That it places the emphasis on the person, rather than on the autism.

As a teacher and a mother of a son with autism I prefer person first language. My son has autism rather than my autistic son. He is not autism, it is just a part of who he is. He was a person before he was a disability.

I prefer “person with autism” by far! ANY individual has MANY unique qualities. But we own our qualities, they do not own us!

”Person with autism” puts the person first and the disability/condition last. Autistic person puts the condition first, as if its the most important part of the person.

There are some interesting assumptions in these quotes, aren’t there? They seem to be saying that if I say “autistic person” then I’m claiming that it’s the only quality a person has, or that the person IS autism in some weird, existential way. However, the bit I really find interesting is the claim that “autistic person” is implying that the autism is the most important part of a person.

The thing that strikes me about that is that the english language does not work that way. We use adjective-noun pairings, so the emphasis is actually on the second word, not the first. If I describe a color as being “bluish green” do you visualize something that is closer to green or closer to blue? What if I say “greenish blue”? In English, the first word is a descriptor or modifier of the second word, not the other way around.

And from a linguistics point of view, “person who happens to be experiencing life while living with a label of autism” or whatever the latest in person first is doesn’t sound like the emphasis is on the person. Linguistically, it puts the emphasis on autism, on what makes us different. It kinda even makes it sound like the speaker thinks “Autistic person” is an oxymoron.

So as far as I can tell “person with autism” does not, at all, put the emphasis on the person like people want to claim it does.

Instead, I think it is trying to separate the autism from the person. To treat autism as something that gets attached to a person. That we “have” it much the same way a person has a cold. That it is not an intrinsic part of ourselves, but something separate and apart. Autistic people, for the most part, seem to disagree with this assessment.

I am no more defined by my autism alone than by my hair color, and yet no-one ever questions it when people are refered [sic] to as, say, blonde. If autism wouldn’t be viewed as something less than, people wouldn’t find “person with autism” to be the more respectful term.

I am Autistic, just like I am biracial, just like I am an athlete, a dancer, a writer, an activist. It is an integral part of who I am.

I prefer aspie or autistic person. I cringe at ‘person with autism’, because it makes it sound like the autism is detachable from me. I consider autism just as inherent to my personality as my sense of humor or my IQ

There seems to be a culture slowly emerging among autistic people. It’s still shaky at this point, but increasingly one part of it is pride in being different, and considering autism an identity rather than something we’re “trapped behind.” As such, a rather large number of us strongly prefer identity-first language.

Now, one method I like to use to sort out if a particular way of using language is problematic or not is to replace key words with something else. Two of the above quotations did just that in comparing “autistic” to things like hair color, race, and other points of identity.

So, in terms of identity, I am female. I do not call myself a “person with femaleness.” For me to do so would be ridiculous. When I call myself a female person, I am not saying that my genitals entirely define me. Nor am I saying that it is a quality that “owns me” or that I am reducing my personhood in some way. I am simply describing one aspect of my personhood. I could say the same thing regarding many other forms of my identity, from my preferred androgynous gender identity to the fact that I view myself as a crafter.

On the other hand, what if I replaced “autism” with a different kind of word? Like, maybe “cancer.” One does not say “cancerous person,” unless you happen to have cancer and wish to do so personally (I have never encountered this, but people have many different ways of coping with terrible things, so it wouldn’t surprise me if someone, somewhere chose to do so). Cancer is a horrible disease that is indeed something separate and apart from someone’s intrinsic personhood.

An example of one person’s attitude towards cancer.

So I suppose the question is, is autism more like being female, a crafter, etc; or is it more like a disease such as cancer. From my point of view, those who insist on saying “person with autism” are implicitly saying that they view it more like the latter. Unfortunately, this is really quite offensive and hurtful to those of us who view autism as an identity. In my mind, “getting rid” of my aspergers would basically be getting rid of me. I don’t view myself as some sort of horrible cancer, and I don’t like the idea that other people do.

I think Jess put it well in a comment on this post: “When cancer is excised, we know exactly what’s left behind. Autism is very, very different. It is an entire way of existing. Of seeing and feeling and experiencing the world. It’s a different perspective, a different focus, a different system.”

Now, all of that isn’t even the worst of it. The real problems happen when we try to voice this, and lay claim to our right to identify how we choose.

There are some excellent examples of this over on Autistic Hoya. One in particular happened when she was communicating with an advocate for people and families of people with brain injuries. This person actually directly told Lydia (Autistic Hoya) that she was wrong to use the term “autistic person” and that it is more respectful to say “person with autism.” This person told an autistic person that the way they identify is incorrect, refused to respect both her choice and the general autistic culture, and insisted on using a form that most of us do not prefer. I find this absolutely appalling. You can read Lydia’s response to this letter as well in the link above. Even sadder is when she mentioned in the comments “the person who wrote this letter responded, if you can believe it, with an even more arrogant and condescending email.” I do not have the details on this one, but the very fact that it happened is astonishing to me. Or at least, it should be astonishing.

Sadly, I find this to be yet another example of how autistic people are consistently pushed out of our own advocacy. It should go without saying that we should respect an individual’s right to self-identify. There are people on the spectrum out there who prefer to identify as “people with autism/aspergers” and their choice should be respected. Similarly, the choice to identify as “autistic person” should also be respected, and we should not have to deal with being “corrected” by allistic people, or have our preferences ignored in the name of “respect.” (For the record, it is not respectful to deny a person the right to self-identify. It is, in fact, quite disrespectful.) Then again, it should also go without saying that autistic people should be included in our own advocacy, and our voices should be heard. Yet all too often, we are not included, and our voices are not heard.

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Another reason why disability rights is so important

(fair warning – I am writing this post rather last minute, without the usual editing process that my posts usually get. If it seems rough or raw, that’s why)

Allow me to introduce Amanda Baggs. Amanda is an autistic self-advocate and is fairly well-known in the disability community. The above video is from her youtube channel and is one of the first I ran across when I was looking into autism. Amanda also has a number of other conditions, one of which has become life-threatening.

So, naturally, she has gone to the hospital and is working on getting necessary, life-saving treatment.

Key phrase there. “working on.” Not just getting the treatment, working on getting the treatment.

Why is that?

Because she and her advocates are finding themselves in the position of needing to fight various doctors (and med students) who think that she would be better off dead.

I’m not exaggerating.

On her tumblr Amanda has been writing about her experiences with doctors and the hospital. In one instance she was consulting with a specialist. The specialist kept saying that instead of getting the necessary (and minimally invasive) treatment, she should look into “alternatives.” Her DPA spelled out, explicitly, that “the alternative” is, in fact, death. Her condition is life-threatening. She needs treatment.

Now, I want to make this next part really clear. The doctor, in fact, agreed with this assessment. Yes, the alternative is death.

After doing so, he continued to push for “the alternative.”

In essence, he was saying that she should seriously consider dying as a better option than not dying. That maybe her life isn’t really worth living.

THIS IS NOT OK. Seriously. I shouldn’t even have to say that. Amanda should not have to fight her doctors just to convince them that, actually, she’d rather keep on living. It’s bad enough that we have to fight just to be allowed to go to school. Fighting to live is supposed to be about getting the treatment and fighting whatever illness or condition is threatening your life. It is not supposed to be about fighting your doctors just to get treatment at all.

The only person who gets to decide if Amanda’s life is worth living is Amanda. Clearly, Amanda is quite confident that she wants to keep on living. THIS SHOULD END THE DEBATE. Actually, there never should have been a debate in the first place. No one should question this, ever.

Now, things are getting better for Amanda. She is well known, she has her DPA, people are pressuring the hospital to, you know, do what they’re supposed to do. However, not everyone is so lucky. This is something that has happened to people in the past. It is happening to people now. It will happen to others in the future. We really need to make this stop.

What Amanda needs:

Make noise. At some point I really should write up a defense of the “slacktivism” thing that gets so much scorn, but for now I’ll just say – I believe in noise. Sharing and showing support are useful things to do.

From webmuskie‘s tumblr:

It may be time to add angry phone calls to the hospital to the prayers come Monday morning. (the switchboard # is 802-847-0000 FYI, though you won’t be able to find her in the directory for reasons of privacy. Not a problem because come Monday the hospital administration will surely know who we are).

Fair warning – if you go that route, she is apparently checked in under a different name, which has not been shared with the public. The hospital administration knows this.

What we all need:

For disability to stop meaning “less.”

For everyone – including and especially doctors – to stop thinking they get to determine if other people should keep on living.

And, to throw in a quick line about it being Autism awareness month – this is why awareness isn’t good enough. We’re not being greedy or uncooperative or whatever when we say we need more. We really do need more.

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Does Sheldon have Aspergers?

I’ve decided it’s about time for me to talk about Sheldon Cooper from The Big Bang Theory again. Specifically, about how he is so completely portrayed as a stereotype of Asperger’s, yet the show never just comes out and says so. Even more specifically, about the reasons the show’s creators have given for why they are refraining from doing so, and how utterly offensive those reasons are.

This is a topic that has been bubbling around in my head ever since I first encountered it, as well as the blow-to-the-gut feeling I had upon first hearing a rough outline of the justifications for not giving Sheldon the Aspergers label. Fair warning – this is an emotional enough topic for me that I’m probably going to have some trouble writing it. Also, I am not always very good at unpacking and explaining why something is problematic and/or offensive, and I’m not sure I am going to have all the words I need to do it justice or fully explain my feelings. Still, I am going to try.

So basically, apparently lots of people have questioned whether or not Sheldon has Aspergers. Enough so that there are multiple articles out there talking about it, and the show’s creators have talked some about why they have not and will not give Sheldon that particular label. The problem is I happen to find all their reasons deeply problematic and offensive. I figure I’ll just go over them and try to unpack their problems in no particular order.

Number one on the list is that if he’s afflicted with a real disease, how can his friends mock him the way they do? [link]

Alright, if that’s what they are going to declare “number one,” then that’s where I’ll start. The first problem that jumps out at me is the fact that they call autism a disease. Autism is NOT a disease, not at all, and it is incredibly offensive to call it that. Autism is a condition, a syndrome, and can also be termed a disorder as well as a developmental delay. It is not, not at all, a disease. A disease is something you have. Something that happens to you, but is separate from who you are. Autism is a difference that is there from the start, and will always be there. It is about how I think and view and interact with the world. For me, and many others, it is an identity.

However, there is another matter deeply problematic in this statement of theirs. One thing more or less everyone I come across in the autism community agrees on regarding Sheldon Cooper is that the Sheldon jokes (very nearly all of them) are autism jokes. Some of us find them funny, others of us find them offensive, but all of us recognize them for what they are. So when I read that sentence up there, it sounds to me like they are saying they want to mock autism and make autism jokes (because, you know, that’s exactly what they’re doing), but they don’t actually want to admit to it. Personally, I am not in the least bit impressed with that. I would much rather people just admit that they are making jokes about Aspergers rather than look away and deny it because, I don’t know, they might feel bad if they own up to what they are doing.

Our feeling is that Sheldon’s mother never got a diagnosis, so we don’t have one.

Well that doesn’t make any sense at all. It does, however, reflect some ignorant attitudes I’ve seen around occasionally, that seem to assume that Asperger’s has been on the books as a diagnosis more or less forever. In reality, Aspergers only made it into the DSM in 1994, and even then it was fairly obscure. It wasn’t until 2000 or so that it really started becoming a thing. Occasionally I encounter people who believe that if someone did not get a diagnosis in childhood, that must mean they weren’t really challenged and thus their perspectives as adults don’t mean much. This is very far from the truth, and I imagine many adults who are being diagnosed today would have been diagnosed as children, had it been known. Sheldon’s mom not getting him a diagnosis means *nothing whatsoever.* That particular justification sounds, at best, like a bad cop-out. At worst, it sounds like an echo of the harmful attitude that people diagnosed in adulthood must not have had significant problems as children.

Instead of the writers having the freedom to make Sheldon as anal and nerdy as they like, they would be constrained by the nature of the ailment.

Parsons and the show’s writers have very carefully avoided labeling Sheldon as having an ASD, because they’ve said they don’t want to be limited by what an autistic person would or wouldn’t do. [link]

Ok, I’m going to address these two together, because they are more or less the same thing, and have the same problems. Here, they are saying that if they actually labelled him with an ASD, they would suddenly find themselves writing a personification of autism, rather than writing, oh I don’t know, A CHARACTER. As though if you give someone that label, suddenly EVERYTHING they do is about that label or comes from that label.

It’s like they’re saying they would do exactly what ada hoffmann asks writers not to do in her livejournal post here. When you write about autism, there is absolutely no need to reduce the autistic character to only autism, or (even worse) to only the deficiencies of autism. In fact, it is it is a fairly horrible thing to do, because it denies us our humanity, our agency, our flexible, dynamic, and incredibly diverse selves. That is not ok at all. Labelling Sheldon with Aspergers would not suddenly limit him, and it is not ok to act like it would. It really says something about what they think of those of us on the autism spectrum – and what it says is nothing good.

As for “limited by what an autistic person would or wouldn’t do,” well that’s an interesting statement. Exactly what limits are those, anyway? Ari Ne’eman is a white house appointee, and founded the Autistic Self Advocacy Network. Alexis Wineman was Miss Montana and made into the top 15 for Miss America. Jessica-Jane Applegate won a gold medal in the paralympics. If you browse through ThAutcast’s facebook page, you’ll see autistic musicians, autistic artists, autistic people who play any variety of games, autistic people with intellectual gifts, the list goes on and on and on. Tell me, what exactly are these limitations on what autistic people “would or wouldn’t do”?

In reality, there is no reason that Sheldon would lose anything if he were labelled with Aspergers. Not unless the writers decided to do so, and if they did it would ENTIRELY be something they chose to do. Not something they were forced to do because of the label.

But by not defining Sheldon, they’ve inadvertently captured an important aspect of autism, which is that the disorder has common tendencies, but flexible boundaries.

No. Well, yes in that they are showing that “the disorder has common tendencies, but flexible boundaries,” but it is not at all *because* they did not define Sheldon. As I said above, they could still do so if they said he had Aspergers. In fact, it would be incredibly offensive (and downright wrong) if giving him that particular label changed any of that. And really, the author of that quote admitted, right in that sentence, that labelling Sheldon as being on the autism spectrum would not (or at least should not) have lost that aspect of autism.

Not unless the writers decided that they would do it that way. Which would be predictable, but wrong.

In the writers’ minds, calling it Asperger’s creates too much of a burden to get the details right. [link]

You know what… at least this one is honest. Everything so far has shown significant ignorance about Aspergers on the part of the writers/creators, to the point of being really quite offensive. Clearly, they do not know Aspergers well enough to be able to write about it, if they actually believe all the things I talked about above. While I am internally facepalming about their worrying about “details,” there is no question that they would at least need to learn enough to rid themselves of their misperceptions and prejudices. That said, I am disappointed with their decision, as well as their attitude that it would be a “burden” to learn even the basics of autism.

Personally, I would love to see Sheldon get diagnosed with Aspergers (or other ASD). It would not at all need to change the way he is portrayed, nor would it need to reduce him to “autism traits.” He could be just as eccentric, dynamic, and funny (or offensive, depending on your point of view) as ever, with all the randomness he sometimes has.

And really, this post is not purely about the fact that the creators of The Big Bang Theory have said offensive things about Aspergers in their justifications to not label Sheldon. They have simply expressed the same misinformation that already surrounds us. The fact that people seem to so readily accept their justifications just further shows how far the ignorance goes, which is a big reason why I wanted to write this. These attitudes and beliefs are wrong. They are offensive. And they need to stop.

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“Find the Others”

I do not want to have to start carrying a shield around wherever I go just so people leave me alone.

So I tend to like Ze Frank’s videos, but once in a while I seem to disagree with them. Find the Others would be one of those (note: words are apparently not by him. they are by Timothy Leary).

“Admit it. You aren’t like them. You’re not even close”

This is true. And the point in the video is that it isn’t true for anyone, which I also more or less agree with. People are different from each other, nor am I inclined to angst about homogeneity amongst the masses. People are the same in some ways, different in others, we’re all individuals, it’s cool.

“it seems the more you try to fit in, the more you feel like an outsider”

Hm… ok, this is also true. I’ve been doing less and less trying to fit in the past few years, and while I do still feel like an outsider (to the point that it has religious significance), I find I worry about it less and less as well.

“watching the ‘normal people’ as they go about their automatic existences.”

Wait, what? I think I’ve just been insulted. Am I really supposed to view other people that way? Do other people view those around them that way? I admit, I don’t really spend a lot of time (any time) thinking about the personal existence of Random Guy I pass on the street, but I don’t go thinking his existence is automatic. I mean, that seems incredibly unlikely. People aren’t robots (and even if they were, maybe they’d be like Data).

“For every time you say club passwords like: ‘Have a nice day’ and ‘Weather’s awful today,eh’, you yearn inside to say forbidden things like: ‘Tell me something that makes you cry’ or ‘What do you think deja vu is for?’

Wow, no. As I’ve written about before, I am increasingly of the opinion that the things we do are rarely, if ever, meaningless. Even if we don’t consciously know their meaning, the fact that we keep doing them says something, and I don’t think that something has anything to do with Just Being Normal or Just Playing Along.

Ritual still has a place in our society, even if we’re less direct about it. Those “club passwords” are social rituals, helping to create connection between strangers. Personally, I don’t tend to yearn to say those types of forbidden things to complete strangers, and if I’m saying “have a nice day” to someone I know, it’s probably a ritual farewell and asking a “deep” question would be inappropriate at that time. Yes, I do yearn to have those types of conversations with people I’m close to, and with my friends when I say “how are you doing?” I actually mean it and want a real answer. But if I’m playing a ritual with a person I really don’t have much of a connection with, then I am also understanding that leaping to those other questions might have to wait. I mean, I’m not super thrilled with the idea of telling anyone what makes me cry, much less someone I don’t have a good connection with.

“Face it, you even want to talk to that girl in the elevator.”

Are you kidding? No I don’t! Nor do I want some random stranger to talk to me when I’m in an elevator and have no way to escape. Plus, I do not owe some random stranger my time or attention just because we’re in an elevator together and they happen to want it. There are times and places where it’s ok to approach strangers, and elevators are not among them.

“But what if that girl in the elevator, and the balding man who walks past your cubicle at work, are thinking the same thing?”

Since I’m not thinking it, I’m not going to go assuming they’re thinking it. Aren’t we all supposed to be individuals here? Are we getting homogeneous again?

“Who knows what you might learn from taking a chance on conversation with a stranger?”

Ok, this one seems to be true enough. I certainly don’t know what I might learn, but that doesn’t mean I’m going to go approaching strangers everywhere. Anxiety, shyness, and social awkwardness aside, this just doesn’t seem to be a good idea. Once in a while, yes, I get amazing conversations with strangers, and I like that they happen. I still don’t want Random Guy In The Elevator to ask me what makes me cry. Because creepy.

“Everyone carries a piece of the puzzle. No one comes into your life by mere coincidence.”

What puzzle?

Ok, maybe not “mere” coincidence, but unless you believe in a deity (or something) directing all of our lives as though we are pieces on a game board (I do not), coincidence plays a role.

“Find the others…”

Sounds nifty! Finding connection is amazing and fabulous and I highly recommend it. But I am not going to go about it in the ways described above.

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