Exploring The Social Model: Self-Determination
Autists are dis/abled. As such, our needs are not met in a neurotypical world, our human rights and freedoms are denied, and participation in the world (socialization, work, college, even communication or physical participation) is made inaccessible to us. And as a result of this, we are not enabled to lead self-determined lives. A person living in a world which is routinely made inaccessible to them and in which their human rights and freedoms are routinely denied is rarely considered capable of determining the course of their future, and even more rarely permitted such an opportunity. Such is the fate of most autists. Rarely does an autistic experience romantic success, live outside a family or institutional home, pick their own friends, or work for a living wage at a meaningful job for more than a month. The most significant choice many autists make each day is which breakfast cereal they prefer.
This is not enough.
“But they are so disabled!” is no excuse.
Dis/ability, under the social model, is distinct from impairment—physical or functional limitations. An impairment is neutral—not seeing infrared has the same value as cortical blindness. Similarly, under the social model, everyone has the same basic needs—food, oxygen, communication, shelter, livelihood, etc. How theses needs are met, and whether or not an individual needs them met the same way as anyone else, is irrelevant.
“But they are so impaired!” is no better.
Dis/ability arrises when a person’s impairment is not accommodated by society and/or their needs are not met or are medicalized and stigmatized due to their “atypical” manifestation. Dis/ability happens when a person is disabled from full participation in society or from having their needs met as a result of society’s response to impairment. Dis/ability means that since you have a different or additional set of impairments compared to the average person, and your needs will have to be met differently, you … don’t get your needs met. You … don’t get to participate. You…don’t get to exercise your abilities and participate in society.
“Well then, that’s that. It’s a physical fact: they are disabled and so they cannot control their lives!” misses and twists the point entirely.
This is not a physical fact. There is never any physical reason why an impairment precludes the meeting of needs, the exercise of human rights, and full participation in society. Can’t hear? You can still communicate and be communicated with. It’s just going to look different. Etc. etc. for every other impairment. Can’t walk? There are ways to make the world come to you, and ways to let you go to the rest of the world. Have trouble comprehending events and problem-solving accordingly? There are ways to adapt, ways to help with that. Etc. Dis/ability arises when society is not willing to adapt to everyone. It’s not necessarily a social conspiracy—there was never a meeting in which it was announced that all people with one leg were to be feared and hated, for example—but it is a daily reality reinforced in a hundred tiny structural ways. Dis/ability is buildings with stairs but no ramps, movies without captions, and nonverbal children without access to AAC. Disability is autistic people whose most significant choice every day is what to eat for breakfast.
There are ways to change this. Taking accessibility and human rights seriously, for example. Challenging common ableist rhetoric and practices—ableism is discrimination on basis of ability, and is the mindset which allows people to become disabled as described above. But even then there is one more piece to the puzzle before we can have equality. Self-determination.
Self-determination can start as simply as making choices among objects—which cereal to eat, which shirt to wear. And that’s maybe fine at first for small children, or people who have never been permitted choice before. But life is more than shirts and cereal.
Self-determination means being able to chose work that is meaningful to you. It means being able to chose your friends and mates. It means being able to live outside of a family or institutional home if you want to. It means being able to learn the things you want, communicate your desires and opinions, control what attention you receive, and go where you want to go. It means, roughly, being in charge of your life.
It’s a human right within the grasp of everyone. It’s been made inaccessible to a lot of people. We won’t have real equality until every autistic can lay claim to it. Level of impairment is no excuse. This is Dis/ability 101. Human rights have been demonstrated to be the foundation from which all dis/ability rights flow. Self-determination is the crucial next step, and without it human rights cannot be said to truly be honored. Accessibility makes this possible. And then, equality is within reach.
Julia Bascom on 08/30/10 in featured, Society | 16 Comments | Read More
Comments (16)
“Rarely does an autistic experience romantic success, live outside a family or institutional home, pick their own friends, or work for a living wage at a meaningful job for more than a month. The most significant choice many autists make each day is which breakfast cereal they prefer.”
I’m not sure what “rarely” means here, but more than half of people diagnosed with autism fall into what the medical community calls the Asperger’s/HFA category, and I know an awful lot of people in that category (myself included) who have romantic success, our own places to live, our own friends, and work that lasts for much longer than a month. Many of us even have our own children. And yes, attaining all those things was phenomenally painful and difficult, especially for those of us who spent years without a proper diagnosis. We faced discrimination, barriers to full inclusion, vulnerability, loneliness, bullying, abuse, and a host of other injustices for reasons we couldn’t even understand, but somehow we managed to create lives for ourselves. And yet, for some reason, we’ve been left out of your piece. I’m not sure why you felt you needed to do that in order to make your point. I almost understand where it comes from when non-autistic people do it; after all, how can they understand my experience as an autistic when I’m better able to navigate than their autistic loved ones? But I’m really dismayed to see it coming from another autistic.
Obviously there is a great deal to do toward full inclusion and full justice for all autistics, and I’m not denying the hell that anyone goes through on a daily basis. But it’s not necessary to make the point by overstatements that can easily be refuted and/or used to discredit the majority of autistics as not being the “true” faces of autism. The fact is, there is no one “true” face of autism. There are widely variable ways in which autistic people engage the world, and we all belong.
I wondered at this too, Julia, though I expect you’re capable of saving your points even if you do choose to walk back some of your argument. One might suggest, anyway, that there are a number of autistic children in Silicon Valley who might offer themselves as walking, talking refutations in support of the objection Rachel outlines.
http://www.wired.com/wired/archive/9.12/aspergers_pr.html
….if fifty percent of autistics are NOT HFA/AS, and if a significant portion of HSA/AS are indeed failing to simultaneously manage work, friends, family, independence, etc…
then my point stands.
I really cannot believe that a piece about the social injustices associated with dis/ability and the importance of self-determination is being picked apart because a minority of privileged autistics feel left out. It’s disappointing. And it’s frankly offensive to be accused of saying that people who DO succeed aren’t real autistics. If my opening paragraph somehow seemed divisive, this whole thing smacks of Asperger’s Supremacy.
I know you well enough, Julia, to know you would not be inappropriately divisive, and I know you both well enough to know that you have much more in common than otherwise. However much pause Rachel or I may have been given by your words, however unnecessarily, consider that there’s a larger, unschooled audience out there who may be just as confused, all without knowing from Asperger’s Supremacy.
I’m more concerned that we reach them than I am that you reach Rachel and me. And like I say, I think your points stand, regardless of how easy or difficult it is for anyone in particular to sort out your supporting argument.
Julia,
You want full inclusion, but in your comments, you’re belittling Mark’s feelings and my feelings about the reality of our lives being left out of your analysis. If we all belong, then the unique reality of each of us, and the feelings that derive from that reality, deserve respect. Belittling us as a “minority of privileged autistics” and accusing us of Asperger’s Supremacy does not move that process forward.
I’m not saying that your analysis of social injustice and disabilism is wrong at all. In fact, I fully agree with it, and my comments (along with the body of my work) reflect that. Should I have said that up front? Perhaps. I don’t always remember to do that, and it probably would have helped. But when you say that “rarely” do autistics find successful romantic relationships, live independently, work for more than a month at a time, *or* pick their own friends, I still reserve the right to differ, and doing so makes me neither privileged nor an Aspie supremacist. (Your opening paragraph did not say that rarely can we do all those things *simultaneously*; you said that rarely can most of us do any of those things at all, which is simply not true.) Amanda Baggs, who is pegged as “low functioning” (the medical community’s term, not mine) lives in her own apartment and picks her own friends. She also writes, paints, makes videos, and has the unconditional support of her family for being exactly who she is. Is she a “privileged autistic,” too? I live in my own house, pick my own friends (and they are hardly numerous), and have a successful relationship, but I do not currently work (despite the fact that I want to), find myself socially isolated most of the time, and have been dealing with the trauma of being an abuse survivor without the support or protection of any extended family at all for decades. So please don’t talk to me about how privileged I am.
Trying to attack me with the bludgeon of Asperger’s Supremacy will not get you far with me, or with anyone who knows me, or my work, or my life, or the ways in which I ally myself with people across the spectrum and refuse to accept hierarchical distinctions between us. Hell, I generally don’t even self-identify as having Asperger’s (again, the medical community’s label, not mine) because it’s so divisive. I only raised it here (with great trepidation, which apparently was warranted) because leaving the reality of the lives of people with that label out of the equation is just as wrong as when people with that label distance themselves from other autistics to avoid the stigma of association with “those people over there.” I do not do that, and I never will do that.
I agree that whether or not the statistics are accurate is not the main issue here. Even if only one autistic person were being denied self-determination, that would still be too many.
And Julia, I didn’t read Rachel’s comment as accusing you of anything. As I understood it, she was simply pointing out that there are OTHER people who claim that those of us who are advocating for ourselves can’t be real autistics, and that we need to be careful not to play into their hands. I would say that’s a fair point.
P.S. I never said that you were accusing people who “succeed” of not being real autistics. I said that your leaving us out gives power to people who believe that we are not real autistics and wish to discredit us.
As Gwen stated, the percentage of autistics described by this article are irrelevant. “Most” and “rarely” were therefore deliberately chosen to prevent the issues which would arise from saying “some” or even “too many”-the argument that this article is not applicable to everyone. The “or”, then, was chosen to emphasize the inclusion of people who appear to have it all together but are in fact suffering and not really leading self-determined lives, as well as to prevent the privileging of one example over the other.
What does “most” really mean, anyways? It’s a deliberately unclear term, meaning anywhere from 51% to 99%. It was chosen so that the focus would not be on numbers, but on the content of the article.
Which makes the hyper-focus on this conversation extremely ironic.
Evidence, not based on functioning labels, but on the reality of these individuals lives as evidenced by the author’s experiences and acquaintances as well as numerous bloggers and writers. 85% unemployment, high rates of drug and alcohol abuse, mental illness, etc., indicate that this is indeed a statistical majority of autistics.
Some autistics are able to find self-determination later in life, but this does not mean that they were not included in the “most”, or that their triumph of human rights is not unfortunately and unjustifiably rare in many cases.
What I have learned:
Shredding a piece based on what you have been told is a blatant misinterpretation=apparently reasonable critique.
Responding to an attempt to subvert a piece about self-determination being denied into a piece about autistics who succeed = exclusion, belittling, and bludgeoning.
This despite the fact that the existence of such autistics was never denied. Apparently a piece about people who are suffering needs to include people who are currently not.
A piece about dis/ability rights is apparently not complete if written without an eye towards internal politics. Every piece must be written with an eye towards whether or not detractors could gain ammunition from it.
This despite the fact that the piece is explicitly about countering common arguments used against autistics, including self-advocates.
ALL OF THIS because of an interpretation which completely ignores the arguments laid out in this post as well as the entire series, to say nothing of the first paragraph.
Which all:
a) define self-determination
b) state that is denied to a majority of autistics
c) explain how this lack of self-determination arises (dis/ability) and why this is a problem
d) lays out solutions for change
e) leaves no one out, as an autistic is either being denied, gaining, or enjoying self-determination at various levels.
The focus is absolutely on those who are either denied or who are gaining self-determination. That is consistent with a piece about dis/ability (the intersection of impairment and oppression) in a series about the social model of dis/ability, which focuses on the social injustice of dis/ability. This is not erasure, nor is it to be taken as somehow a list of criteria for who is and isn’t a “real” autistic. That some people will choose to impose politics onto such a series is their own problem, not my concern.
Once again. It is simply not true that a majority of autistics are incapable of self-determination. NOR IS THIS STATED IN THE ARTICLE.
It IS true that a majority of autistics ARE being prevented from exercising self-determination. If this were not true, if autistics enjoyed equality (the final article in the series, which you can find on Autism Speaking now), then autism would not be considered a dis/ability, just a difference.
This article is concerned with explaining how the social model conceives of and addresses this, as well as with busting the trope of “Individual x is so dis/abled that self-determination is impossible. You self-determined people aren’t really autistic. Autistics can’t achieve that”.
Which, ironically, is about as inclusive as it gets, and in fact leaves no one out.
Now excuse me, I need to go bang my head so I can stop freaking out over all of this.
Julia, disagreeing with you about a point in your piece is not the same as “shredding” and “subverting” it. That was never my intention, as evidenced by…well, just about everything I’ve ever written.
No matter how important your words, I have the right to disagree with them on any grounds I choose, and I have the right to be treated with respect in the process. I have no problem with your disagreeing with my arguments. No problem whatsoever. I have a big problem when you respond by marginalizing me as being in a “minority of privileged autistics” and making me into the enemy by telling me I’m shredding and subverting your message. Then we’re getting into “leftier-than-thou” territory, and having gone to UC Berkeley and engaged in progressive politics there, I’m more than familiar with that phenomenon, having been on both sides of it. It’s not a good thing to have happen between allies, especially allies in vulnerable minorities.
I’m not sure you recognize the impact of your words, so I will be as clear as I can. To be told that I am a “privileged autistic” after living the first 50 years of my life in the wilderness of undiagnosed autism, driving myself into burnout, bullied by my family, abandoned by friends for not being “normal,” scraping for everything I’ve ever accomplished, chronically misdiagnosed and prescribed medications that did me tremendous harm, unable to find work because I cannot find a disability-friendly employer, and vulnerable to all the things that any autistic has to deal with (like losing my doctor in May during a potentially life-threatening medical crisis the day after making a request for a disability-related accommodation)—it’s all very painful, very alienating, and very upsetting. And it’s especially upsetting to be told that I’m shredding and subverting your piece when, except for the first paragraph, I agreed with every single word of it, and have said so explicitly. In fact, except for the first paragraph, it sounds exactly like something I would write.
When I disagree with you, or with anyone, it is a sign of the highest respect. If I didn’t respect your intelligence, your commitment, or your intention, I would have moved on without a word and not given any of it a second thought.
I believe you when you say that your article was meant to be inclusive. How you’ve treated me in your comments, simply for disagreeing with you, is not.
If disagreement is a sign of highest respect, you might want to make that clear. Might want to mention when you actually agree with all but one sentence of someone’s writing. Might not want to devote paragraphs devoted to elaborating on how a sentence supports views the writer has clearly and consistently over time demonstrated to be abhorrent. Etc.
I’m often disagreed with, often quite strongly, often in person. I really am fine with that. I’m not fine with repeatedly being critized for something I never said and which goes against everything I believe in. I am not fine with being powerless to respond. Regardless of how you intended it (and isn’t this all about intentions not meaning anything? As mine certainly don’t seem to count), your comments did not come across to me as simple disagreement.
I resent being definitively told what I am and am not saying and doing. I resent being told I am doing and saying things I explicitly am not. I resent getting pulled into politics and arguments based on misinterpretations. I get furious when I am told I am hurting the people that this series is designed to help, but this allegation is, again, based on a misreading, detracts from the whole purpose of the series, and becomes a complete and utter derailment.
Let me be very clear. In your very first comment you said that you had struggled for fifty years to reach where you are today, and since you were there, you were left out. But if you read the piece, you’ll see that that struggle and triumph included you in every sentence. I’m not concerned with the triumph and those living it as much as I am with the struggle and those living that. But the piece makes that clear, and that is *not* exclusionary.
So I felt under attack. And just so you know? You’ve caused me quite a bit of pain. I don’t usually bang my head, for example. Or decide to stop blogging about autism issues, something I’ve been doing for years. I don’t usually have flashbacks to abuse from eight years ago. So no, I’m not going to be impressed when you say that my comments aren’t inclusive, but yours are fine. I’m not going to be impressed when you move off the article, and onto me.
But apparently every word I have written in an attempt to defend myself and prevent other people from similarly misinterpreting my work has apparently come off the same way, as an attack. I am sorry for that. And so I think we should end this conversation.
I’m sorry that I haven’t been able to explain to you properly that you, as someone who suffered for fifty years, are very much included in this piece and in the sentence you take such issue with. I really do mean that, and I thought my last comment made that abundantly clear.
And that’s all I have to say. This wasn’t an exclusionary piece. And it didn’t need ten comments about whether or not it was. But don’t worry. I won’t try again.
it took me a long time to sort all this through—and i hope i don’t add any more fuel to the fire—but this is how i see things. i agree, there needs to be full access and accommodation for all on the spectrum. the fact that so many are being robbed of all but the most basic choices is really criminal.
but one of the reasons so many are being robbed of choice that many in the larger culture believe we’re just too impaired to make it on our own.
i think there’s a basic agreement—this is the point being made: fighting a socially-imposed dis-ability has to do with expanding rights. in some ways this can be accomplished by promoting a greater understanding that, for instance, a different way of processing information is not an impaired way of processing information—it’s simply different. and in order to ensure inclusion, this different means of processing information may need a means of accommodation. (ex: text, assistive communication, etc.)
however, one stereotype often embraced profoundly in the larger culture is that because we’re on the spectrum, we don’t have strengths of our own—everything we do must be “enabled” through social “assistance.”
the difference is in how the accommodation is seen. if the general public believes that we simply “can’t live” without the the Great Service Being So Generously Provided —it just becomes minimizing. if people understand that we’re basically very able—we just have different ways of interacting with the world—then accommodation is seen in a completely different light by all.
if one autistic says, “i have a relationship, my self-chosen friends, and have worked in the community,” it doesn’t mean she’s a part of a privileged minority. it just means “i have strengths, and i’m not sure they’re being acknowledged.” i think it’s also important to realize that many of us find our way through mazes with varying degrees of accommodation—some more, some less—it won’t be the same for all. none of this is more or less legitimate.
But bluedancer, the article isn’t about how an autistic has no strengths or how The Great Service Is So Generously Provided. It’s about how dis/ability works. It’s not about dismissing strengths, but abut showing how the intersection of oppression and impairment can be analyzed. That’s all. Have you read the rest of the series and seen how this fits in?
Autism politics have no part in this. Readings about divying up autistics, excluding people, denying autistic strengths, etc etc etc have been imposed on the piece from the outside. Bloody frustrating.
Perhaps the piece just needs to be deleted, if it’s apparently so unclear and generating so much negative confusion.
i understand this. i was trying to explain how views imposed by the larger culture can more or less interact with the dialogue. in other words, i think what you’re saying with the piece (the essence of it) is that fighting a socially-imposed disability has to do with expanding rights. this is done by generating awareness that our differences from the larger culture aren’t disabling in and of themselves—the disabling aspect comes in when the larger culture fails to accommodate a difference (ex. absence of ramps for those in chairs, a refusal to communicate with someone through a source other than speech, etc.)
i think everyone sees this and agrees with it.
i do agree with rachel that it’s a little skewing to say most can’t choose relationships, determine who their own friends are, etc.” even if it’s stated that this is because of imposed barriers, not because of the autism itself. many do go on to do these things, despite barriers, and i think it was felt this wasn’t being acknowledged.
my point is that certain elements in the general culture view us as helpless. this means that even if accommodation is provided in such an atmosphere, things can get a little paternalistic. so many feel (myself included) that it’s important to assert strengths whenever possible.
i’m not saying you’re denying strengths. just that in not presenting some aspect of the community, the whole picture of strength is not presented.
i think you’re a “strength-asserter” too. most likely if rachel didn’t feel that you are also, she wouldn’t have pointed out that she felt something had been left out of the picture.
it’s possible nothing’s been left out of the picture, and this is all misunderstanding.
but either way, i see it being about one sentence, not the body of the piece.
i hope that makes sense. at least, i hope i haven’t added to the confusion.
when i first encountered it, i thought nothing could be worked through. but really, i think it will all be worked through in the end.
Maybe this would make it more clear?
This is not a piece about the nature of autism, or the strengths of autistics. That has been written about at great, great length by other people in other spaces, and it’s not what I was interested in addressing here. If you read the entire series, you’ll see that it’s about the social model of disability, which stresses the intersection of oppression and impairment. So I talk about the reality of being bludgeoned by that. Not about living with or overcoming it or empowerment. Perhaps I should. Perhaps that would be a good way to complete this.
But this was supposed to provide fodder for a quick reference that people new to neurodiversity could come to when they didn’t understand the “social model”. It’s not even a complete stand-alone piece, but one of a series about human rights being denied autists and the consequent suffering. It was not a comprehensive neurodiveristy/autism acceptance 101 piece-that would be far too long! It was necessary to cut it up into little discreet chunks. Take one small bite from the huge body of advocacy.
There are clearly disadvantages to such an approach.
i see. but in the end, i’m not saying what you should or shouldn’t do with the piece: that’s up to you. my main intention in restating everything (the way i see what’s been said, anyway) was to try to present both sides. mainly i wanted to take some of the heat out of the discussion: that way disagreements can be safer for those posting, not so jangling.
but i’m not always known for minding my own business.
i hope everything works out.
I apprectiated your insights Bluedancer.