Anything or nothing.

Standard

A famous quote attributed to Susan B. Anthony (who probably, like most feminists of her time, had atrocious views on disability, among other things, but oh well):

Cautious, careful people always casting about to preserve their reputation or social standing never can bring about reform. Those who are really in earnest are willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathies with despised ideas and their advocates, and bear the consequences.

Some sources say “social standards,” others say “social standing”.

I’ve seen a several blog entries lately that seem to express a high degree of concern and disturbedness about the fact that there are differing opinions in the “autism community,” and that said “community” is so often divided along these lines. There is a lot of emphasis on finding our common ground. And I sense a lot of equating opinions strongly presented with hostility, and opinions strongly held with dogmatism, without apparent recognition that a strongly presented, strongly held opinion may be nuanced, may be non-hostile in nature, and so forth.

All I know is that as long as autistic people are presented day in and day out with the idea that we need a cure, or at least to be more like non-autistic people, in order to be happy…

As long as various forms of institutions and involuntary segregation are presented as a good thing for people…

As long as people go on being tortured in the name of treatment…

As long as we are viewed in a highly medicalized way all-around…

As long as we are taught to be ashamed of who we are

As long as murders of people like us keep being excused…

As long as when we die people say we’re better off...

As long as people are forcing dangerous or harmful things onto us in the hope that we will “get better” and saying it’s all worth it...

As long as our existing or potential communication systems and learning styles go almost totally denied…

As long as children continue to grow up believing in an awful future and become suicidal because they see nothing different

As long as we’re shut out of most people’s conception of a contributing member of society unless we can manage to run ourselves ragged participating in a broken system…

As long as we hold no power or only token power in organizations that claim to represent our interests

As long as the only ones of us who are considered acceptable are those who toe the party line of people who most certainly do not represent our best interests…

As long as there are people working to make sure that people like us are prevented before we’re even born, possibly before we’re even conceived, because it would just be oh-so-horrible to have more of us in the world

As long as we are considered merely a drain on the more worthwhile members of society…

As long as we are routinely brutalized from childhood to adulthood with very little recourse…

And as long as the most powerful people support most of the above things in regard to us and get away with it…

…then opposing even one of these things (let alone more than one) in any remotely powerful way is going to be considered by many to be mean, hostile, hateful, disgusting, in poor taste, infighting, snobbish, self-righteous, destroying unity, whiny, ignoring the needs of low-functioning autistics (as if people in that grouping don’t need rights), and many, many other terms that I have heard both autistic and non-autistic people use to describe autistic people who go against the status quo.

…then there will be people who will insist that in order for us to get along with each other, we must try not to oppose any of these things too loudly.

…then there will be people who will insist that when we oppose these things that we are destroying real unity, instead of a mere illusion of unity brought on by the fact that we are silenced.

…then autistic and disabled people will continue to have a really crappy place in the world.

…then I and many others will continue to speak out against these things and for a world that is better, and we will continue to fight in any reasonable way we know how for this to happen, and many of us will continue to do this out of love (not the emotion, something else) rather than out of any of the things that people are always claiming.

Sure, I will sometimes make alliances with people who don’t agree with me, when working on specific issues. That’s life. But I will continue to try to discern what the right thing to do is, and do it, rather than be led by the allure of social acceptance in the form of being considered neutral or impartial. Some people will assume this means I won’t associate with people with differing opinions, and that’s not the case, but, that’s just one more false assumption to join the list above. And there are more important things in the world than avoiding doing the right thing because you’re scared people will make assumptions about you.

The “autism community” may or may not have various things in common. I don’t even believe it to be one community. But I know that if I were to do what it would probably want of me in order to be accepted by the most currently politically powerful people in it, I would simply be swallowed up by it and be one more voice that didn’t get heard. That’s what happens when your voice is one of dissent and you allow it to be silenced: you just get sucked into the majority view by default.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

26 responses »

  1. On the issue of people not wanting to lose social standing– this brought a whole lot of things to my mind:

    One thing that’s always bothered me is the prevalence of people who consider themselves “allies”– I think you or someone else described them before as “shiny happy liberals”– who are concerned with “helping” only in ways that make them feel good personally, that reaffirm their image of themselves as good people.

    This often just involves adherence to a party line which says that “helping people is good,” without bothering to think about whether the “help” being offered is not what the subjects of those efforts really want. Cure autism! Support “treatment advocacy” for the mentally ill! Support the Jerry Lewis telethon! Just look at those unhappy people on the TV, can’t you see how their lives are being wasted, how they’ll never be able to get anything significant done unless a cure is found.

    And if you ever call them on it, if you ever suggest that this may not be the right way to help, they get defensive– more than anything, they simply want to keep thinking of themselves as good people who want to help the less fortunate. And their definition of helping the less fortunate is often limited to sending money to organizations which are not controlled by the people they claim to be helping.

    Or people who sign up with organizations that recruit people to “socialize” with elderly people in nursing homes, or with disabled people, or retarded or autistic or “mentally ill” people or whatever. The basic idea, the fact that certain kinds of people are deliberately deprived of friendship and human contact and that this must be changed, is not one I would ever argue with. But I can’t quite put into words why the idea of a total stranger volunteering, or even being paid, to be my friend, bothers me so much. The implicit message that I would take from it would be that by virtue of what I am, no one would ever want to be my friend under ordinary circumstances: that if I lacked friends it wasn’t because the people “helping” me had me in a system that made it difficult or impossible for me to make friends on my own terms, but because no sensible normal person would want to spend their time with me. Only an exceptional person would be kind enough to put up with me.

    And you’re always, always expected to be so grateful for any person pretending to be nice to you, even if they carry in a whole baggage of stereotypes, and talk to you as if you were a child. They always look down on you as an inferior no matter how much they smile and pat you. We’ve had people take us under their wing as a pity-friend before in totally non-institutional contexts, and they made it pretty clear to all their “normal” friends whom they wanted to keep standing with that they were only doing it because they felt bad for us, not because they actually liked us. They thought we couldn’t tell, but we could.

    I think part of this goes back to what you said in an earlier post about people who, instead of listening to what someone is actually saying, make a big fuss about your “hurtful, hateful words” and about how their “feelings were hurt.” The pseudo-allies are far too concerned with maintaining their own social status, and so don’t want to bring themselves in for the charge of being hateful and hurtful. (a charge that can be flung for really ridiculous pretexts– like objecting to someone making a sexist, racist or homophobic joke. Somehow, it’s not the joke itself that is deeply hurtful– it’s the objectors who “unfairly persecute other people for having a little bit of fun.”)

    The worst part is when people use the shame they’ve put into you about what you are to turn *you* into a pseudo-activist.

    I have to admit that this did get a lot of us for a long time, and in some places, still does. We have internalized shame that tells us not to rock the boat. We know there will inevitably be people telling us to sit down, shut up, and stop whining. Of being told to stop our “cruel attacks” on people who did nothing wrong, to stop “forcing” our “fringe/fanatic point of view” on people, of being told that we “flamed” people and “attacked them out of nowhere,” of being called trolls and banned because we tried to educate people and post informative links. That we “made everyone else feel like shit.”

    We have never gone out of our way to try to “make anyone else feel bad about themselves.” But maybe, just maybe, it’s not a terrible thing if someone *does* feel bad at the realization that they’ve been complicity in perpetuating oppressive attitudes, if it can impel them to change those attitudes.

  2. I’ve seen a several blog entries lately that seem to express a high degree of concern and disturbedness about the fact that there are differing opinions in the “autism community,” and that said “community” is so often divided along these lines.

    This represents an absurd expectation that all people who share a certain characteristic will all speak with a “common voice.” It’s absurd because there has never, at any time in history, been a case of this happening. And there are no causal mechanisms that could ever result in it happening. Insisting that a marginalized/oppressed group achieve unanimity before its demands can be taken seriously is logically equivalent to demanding that pigs fly. The world simply doesn’t work that way. To this day, there are African-Americans who think that interracial marriage should never have been allowed. There are plenty of gay men and lesbians who think that same-sex marriage is a Bad Thing. Not all women of the 1920s believed that they should have the right to vote. The people who post to alt.support.childfree don’t generally think that motherhood is great, and the people who post to alt.support.diet.low-carb don’t generally think that apple pie is great. Demanding that proponents of change agree 100% is simply nonsensical.

  3. Excellent post, that. And you are absolutely right – it is absolutley right that we are willing to work with others even if we don’t agree with them about more general principles. I’m reminded of the anti-war movement against the war on Iraq, where committed socialists like myself were working alongside conservative Christians and others.
    Another related point is the importance of building alliances with non-disabled people. One British disability rights activist, during a talk a couple of years ago, told a story about a disability rights meeting he had attended, which had discussed campaigning against proposed plans by the government to force more disabled people into work by changing disability benefit rules. He has argued for an alliance with trade unions and a big public march. He was vetoed by the majority on the basis that if non-disabled people were allowed to participate in large numbers, then they would ‘take over’ the campaign, and that what was important was that disabled people fighting the campaign should feel ’empowered’ by the experience. The result was an absolutely tiny lobby by a group of about 5 disabled people, which may have felt very empowering for the individuals who took part, but did nothing to actually stop the changes in benefit rules.

  4. Berke: With regards to the pity-friend thing, that’s happened to me before as well. What shocked me was, once one of them started to reveal how prejudiced she actually was at one time, she:

    (a) Insisted that “after all she’d done for me,” and all the allowances she’d apparently made for me by even allowing me to exist in her presence, she couldn’t believe that I was saying she was prejudiced, and how offended she was by this characterization.

    (b) Did a bunch of “I should have known, everyone I knew was warning me about you,” and compared talking to me to rescuing an injured bird, saying she shouldn’t do things like that. (Certainly she shouldn’t, but not for the reasons she was thinking.)

    And all I’d done was admit to being (at the time, not true at this point for a whole variety of reasons) what you would probably call a median. This was apparently so shocking that nobody should have to put up with it being said in front of them because it would disturb lots of people. And in fact, or so she claimed, nobody should mention things like that outside of psychiatrist’s offices, and since she was not being paid to put up with it, she didn’t have to.  (She knew my history with psychiatry, so she knew full well how insulting that was.)

  5. That’s a great post. Why would we want to pursue a “common ground” if the “common ground” is detrimental to the interests of autistics?

  6. Yeah, I don’t mind “common ground” if it’s in an area where there is true agreement on the goals and means and so forth to some reasonable degree. I’ve worked, for instance, with cure-oriented people, on projects where cure is not the issue at hand.

    I do mind manufacturing “common ground” where it doesn’t exist, or grasping at straws to find “common ground”. Such as, that we all care about the best interests of auties. One, I don’t think all of us do, I think some have other motivations, and many even hate auties on one level or another. Two, we have very different ideas about what’s in auties’ best interests, and to obscure that by going back to the vague “we care about the best interests of auties” seems like merely strengthening all the wrong parts of something.

  7. Part of developing a healthy mindset is getting out of the notion that “everyone else knows more than I do about what’s best for me and people like me”. I think this mindset is common in many who have been at the receiving end of the attitudes you describe in your post — most of which seem to amount to intimidation.

    Many autistic people seem to have something of an “immunity” to this form of intimidation — at least if we are not somehow bullied into silence. Perhaps this is where some of the extreme reactions come from — we respond, and argue, in ways that do not fit the other person’s idea of what the response should be. I think it can be very difficult for someone who is accustomed to getting people to rally around them based on appeals to fatalism, the notion of autism as “a set of problems”, and a Quest for the Cure to encounter those who do not accept such appeals.

    I am presently not sure what to do about this. I have seen what appears to be some progress, with a lot more people communicating than were doing so before.

    But I haven’t seen this so-called “polarization”, at least not in the sense that two balanced, equal, and opposing mindsets are becoming more “entrenched” in their respective agendas. What I have seen — and I consider this a good thing — is more people who realize that being autistic is a worthwhile way to be alive, and who will NOT tolerate being told that they, or their child, are piteous creatures. So then the people still hung up on vaccine scares and cure quests are left feeling this sense of polarization, when what is really happening is that the people who are learning to view “autistic” as just another way of being human are moving forward — getting to know the self they are, or the child they really have, rather than staying stuck in an anxious mode of trying to “get at the real person” and remaining convinced that anything remotely difficult or challenging about raising their child or taking care of him or herself is somehow autism-related.

    I think that part of this comes from an unwillingness to stop thinking of autism as a sickness. Some parents feel that they could never forgive themselves if they found out that if ONLY they’d changed some aspect of their child’s diet, or obtained a particular therapy, would have given them the “normal” child they have built up in their minds. Some of them see their child reacting to certain forms of stimuli in a distressed manner, and because this isn’t the same stimuli that distresses the parent, the reaction is seen as an “extreme behavior”, and evidence that the child is suffering.

    Some people — autistic adults, even — spend their lives trying to fit a model of normality that just makes them less able to function.

    I don’t know how to convince these people to hold off on this attitude. But I do think that getting people to stop being afraid to let go of the sickness model is one of the major challenges here.

  8. Yes, I, also, see people actually willing to have opinions and such. And then it seems like as soon as people have a little too much of an opinion, someone wants to throw the brakes on and say “Hold it, we’ve gone off the deep end,” or something.

  9. Yeah…that and the fact that people seem to think that anyone who expresses an opinion somehow is obligated to “respect” their opinion. I know this isn’t a very popular viewpoint, but the fact is that not all opinions are equally valid, or equally likely to lead to proper scientific conclusions, or to humane treatment of human beings.

    I am happy to respect people as people, but a lot of people seem to equate their ideas with who they are. So it becomes impossible to criticize an idea without someone taking tremendous offense and responding with ad-hominems in return, which of course makes certain that the discussion degrades into emotional dart-firing rather than useful discourse.

    And then there’s also the fact that some things really ARE morally repugnant — such as the condoning, whether overt or tacit, of the murder of disabled people. There’s the notion of autistic people not having as much potential to experience a full and vibrant life as autistic people — to me, that is one of the major things that compels me to keep discussing what makes me happy and what aspects of my life are indeed full of depth and meaning. And none of it has anything to do with “compensation”, but rather, an experience that is perhaps atypical if you go by statistical norms, but no less valid.

    It seems as if discussions become unproductive when people start invoking postmodern relativism rather than actually bothering to rationally defend their assertions, but then when challenged, attempt to defend such assertions with rhetoric and accusations of “arrogance” and other such negative characteristics.

    There are actually two related tactics at work here — first these people will talk about tolerance and open-mindedness, but when challenged, will admit that they are NOT, in fact, neutral. I fully admit not being neutral on the position of whether autism should be “cured” or not — as a person who perceives and experiences the world in a particular way, I am terribly disturbed by any assertions that I somehow would have been better off as someone else, and that it would be a crime against humanity if we didn’t work hard to prevent people similar to me from being born. It really isn’t possible for me to consider the pro-cure viewpoint seriously, since it is obvious to me that being on the spectrum has not in any way hindered my ability to achieve happiness in many respects, learn plenty, and “find a place in the world”, so to speak.

    Then, there is the fact that there is absolutely no supposedly “autistic behavior” that, in and of itself, presents such a horrible travesty to existence that autistic people would be better off not existing at all.

    Not speaking is no reason for someone not to be alive.

    Repetitive movements are no reason not to be alive.

    “Self-injurious behaviors” are not even a reason not to be alive.

    PLENTY of nonautistic people engage in many, many destructive actions (smoking? drunk driving? drug abuse? cutting? unsafe promiscuity?) — and yet you don’t hear people saying we need to “cure” neurotypicality because many neurotypical teenagers end up engaging in risky sexual behavior, abuse drugs, cut themselves, and develop eating disorders.

    Why is it that neurotypicals who have a tendency toward risky behavior or destructive actions are approached from the “we need to address this one thing that seems to be hurting you” standpoint, but autistic people are addressed from the, “Obviously this negative thing is being caused by the fact of you being autistic, so we need to not only make sure you become as ‘unautistic-seeming’ as possible, but also make sure that other people like you aren’t even brought into the world” standpoint?

  10. I entirely don’t trust this “find the middle ground”
    – “lets all agree that we are all probably right” – “lets be nice to people who refuse to take a stand against cruel actions toward autistics, so long as they aren’t doing those things themselves…,” I personally never want to be found on a “common ground” with someone who won’t say that what Rashid Buttar is doing is WRONG, what David Kirby is doing is WRONG, what the Geiers are doing is WRONG, what ASA is doing is WRONG, what Autism Speaks is doing is WRONG. what DAN!, NAA and the law firm of Waters and Kraus is doing is WRONG, what the Autism Society of Canada is doing is WRONG, that using unproven and likely dangerous treatments on children in an effort to cure them before it’s too late is WRONG. that supporting a quack even if he or she is selling useless water (homeophathy) or nearly useless dirt (zeolite) is WRONG, that forcing a kid to act NT just for the comfort sake of others (like saying, “no flapping,” “no staring” to a child), that tossing aside vaccinations based on stupid gossip and conspiracy talk is WRONG, that saying a child is better dead than autistic is WRONG.

  11. Qui tacit dissentit! ;)

    Well, I’m not silent on the keyboard either according to those who’ve observed me in ‘talk’/tty/xirc/YIM/Jabber or other text based systems.

    Yes, regarding reply 1. here, the charity racket is a long time favorite of the shiney ones. exempli gratis: Jerry Lewis telethon, et al.

    Suddenly finding the clouds of guilt overhead, I shall be more concise now and save my blathering for yet another day. ;)

  12. Tell me, Amanda, is reading exhausting for you because it’s difficult ot keep your attention focused on what you’re reading? That’s the problem with me.

  13. I’ve seen a several blog entries lately that seem to express a high degree of concern and disturbedness about the fact that there are differing opinions in the “autism community,” and that said “community” is so often divided along these lines. There is a lot of emphasis on finding our common ground. And I sense a lot of equating opinions strongly presented with hostility, and opinions strongly held with dogmatism, without apparent recognition that a strongly presented, strongly held opinion may be nuanced, may be non-hostile in nature, and so forth.

    I think we’ve mentioned from time to time having been involved in an “activism group” in which the leaders decided that everything that anyone said or wrote in any place online or in a letter, related to the topic of activism, had to be pre-approved. To make sure that it wasn’t ‘offensive’ or wouldn’t ‘give the wrong impression.’ It was considered very important to the cause that we not “fight in public,” and “fighting in public” seemed in practice to be interpreted as merely disagreeing in any way, on any point, with any other member of the group. We were always told we had been too negative, “disagreed for the sake of disagreeing,” stirred up discord by questioning other people too much about policy, complained too much, etc, and were just generally a negative, irresponsible, bad influence who should not be allowed to do activism anywhere without being supervised by other members.

    So basically, because we weren’t allowed to vocally have different views on the same subjects– and we weren’t supposed to talk about topics on which the whole group hadn’t agreed on a pre-approved “official” position– the amount of activism that actually ever got done was virtually nil. (We can give a more detailed account of what happened through e-mail, if you’re interested.)

    That pretty much sealed our opinion on the importance of allowing people who are united for a common cause to have different opinions on individual subjects. To demand so much control over a group that everyone have exactly the same opinions on everything, and that everyone be made to “understand” why certain views are the most proper or the ones that everyone should hold, is not activism– that’s running a cult. You cannot make humans that uniform, or expect them to be.

  14. rocobley: That particular book was exhausting because of the subject matter. I don’t normally get my emotions jerked around that much by books. Still haven’t managed a blog entry on that, or anything else I’ve been thinking of writing on. All I can say is that for someone who’s never experienced it, the author managed to get the feeling of leaving an institution down really well.

    But other aspects of exhaustingness of books I haven’t covered discussing somehow.

    Shiu et al: it’s fine to email me on that.

  15. To me, I think those that look for common ground in the autism community or who fret about the discourse within the community are somewhat missing the point- Autistics should not only be fully engaged in autism issues- those of us not on the spectrum should respectfully defer to the expertise of people with autism- their opinions on autism are generally more valid than ours as “NTs” aren’t they?

    Even the women’s movement was only about women (imagine if 80 years ago dads thought they should be equal partners in the womens’ movement because heck they had young daughters!Or psychologists because hey- we sell treatments for ‘hysteria’and other womens issues!)

    I would be worried if the focus was on finding common ground too much because there isn’t much ground in common with the diffeent autism camps. The needs of a parent of a 3 year old with autism are not anything like the needs of an autistic adult. Where is the common ground with a rigid conservative type parent of an autistic and a freeloving hippy type parent of an autistic? What about an autistic teen from the Bronx and an autistic teen from a farm in India? How will the Evidence of Harm set come together with the Aspies for Freedom set? (I’d like to be a fly on the wall at that bbq!) I mean if half the autistic community is actively pursuing ways to eliminate the other half or claiming that they don’t exist, are imposters or lacking perspective etc.-where do we even begin to come together?

  16. hi there Amanda….
    I’ve been reading your blog for a while now…as a fellow autistic I am glad to find REAL stuff about us, not what I hear in the news and stereotypes. Reading this has inspired me to write my own story, which I must confess I’ve been putting it aside for a few weeks….haven’t written lately. I too am a psychiatric survivor…..I lived with a diagnosis of bipolar and I had to take heavy medication for a little over three years. It was awful, and it’s very hard to write about. I too have “voices”, mainly thoughts that if I wrote how I really felt, people would either not believe me or think I was nuts. I’m very excited to read someone’s words, who feels something similar to me. I feel that some part of why people are intolerant of “LFA’s” (pardon me I couldn’t make up a better term) is because those people (those who are intolerant) are not creative. They don’t think “hmm, okay, this person cannot speak, so let’s find something else! (like FC) in the workplace or elsewhere.” They don’t have patience…..they want to try and “build Rome in a day” so to speak. I think I might go and write something now.
    take care and thanks for making me think….again.

    Athena Ivan

  17. Hi Zilari
    You say
    I think that part of this comes from an unwillingness to stop thinking of autism as a sickness. Some parents feel that they could never forgive themselves if they found out that if ONLY they’d changed some aspect of their child’s diet, or obtained a particular therapy, would have given them the “normal” child they have built up in their minds. Some of them see their child reacting to certain forms of stimuli in a distressed manner, and because this isn’t the same stimuli that distresses the parent, the reaction is seen as an “extreme behavior”, and evidence that the child is suffering.

    Some people — autistic adults, even — spend their lives trying to fit a model of normality that just makes them less able to function.

    I don’t know how to convince these people to hold off on this attitude. But I do think that getting people to stop being afraid to let go of the sickness model is one of the major challenges here…
    It really isn’t possible for me to consider the pro-cure viewpoint seriously, since it is obvious to me that being on the spectrum has not in any way hindered my ability to achieve happiness in many respects, learn plenty, and “find a place in the world”, so to speak.

    Well, I must say that for me is more complicated and, if you allow me, I will try to explain.

    For me there is/are no reason for not to be alive for each human being. And you are right in the sense that morally reprensible opinions are not respectable. BUT I do not want to sink in a low level of discussion to prove a point, therefore many times I prefer to ignore, especially if he/she is offensive to me or -worst and not to forgive- to my son.
    BUT to know about one person exchanging opinoins you must know much more about the life of this person. TO know about why a parent- me- selects some path of treatment- biomedical in my case- involves-to have a fair analysis- a lot of information to be known.
    Why, based on what, doing how, considering what, with what expectations, with what information? ( formal questions)
    With what feelings, with what consideration of the autistic person my son is, with what idea of what autism is, with what attitude to adult autistics, considering what, analyzing what? ( non-formal questions)
    I almost never have been asked about this. It has seemed that telling something near to “biomed.. “for some people is to belong to some club with ALL the same rules, the same ideas, the same answers, the same styles, the same life, the same … And there are no two equal parents in my experience. Each family is a world, each child is unique and each parent is a voice, such as every autistic child, teen and adult is a voice to be hear- and I do my best to do it and I appreciate all your posts- Zilari and ballastexistanz. You opened my mind; you teached me. Thank you for that.

    I consider that I detected, I am treating and my goal is to heal detected properly conditions that can bring pain or suffering to my son- and I found a long list. BUT my expectation is that he will be the best autistic he can be with this ( my goal is not “normalcy”- what is this really?)I will not change his soul, his uniqueness, but
    who can assure me that the behaviors/limitations he sometimes have are not related to the medical conditions he has- beyond the label of ASD, that is for me not more than this and he is far far far far more than a label.

    For me, the genetics roots of autism are may bes. Therefore it depends on the analysis and the individual case is or is not a disease, for me. Condition a lot of facts, biochemical and brain structure facts- but we do not know what else, today and what happens during development in contact with environment for an autistic child, genetically autistic since birth even unnoticed and what are the triggers, how they act,at what level, doing what, since when-beyond what we do know about the first weeks of pregnancy and prenatal insults.

    What I consider am doing is acting on this “secondary” level, but I do not consider that I will change him at the level you consider ( to become “normal”). Therefore I consider that separating the respectable opinions- moralmente respectable- from the person- even if I disagree with, even strongly- at least I can learn and productive exchange can take place to understand why one individual person think the way he/she does, with agreement in mutual respect in disagreement.
    Please let me know if I were clear. Thank you in advance
    María Luján

  18. I mean if half the autistic community is actively pursuing ways to eliminate the other half or claiming that they don’t exist, are imposters or lacking perspective etc.-where do we even begin to come together?

    That’s a question that a lot of groups go through. I’m currently dealing with the identical issue (half of a community trying to invalidate the other half, claiming them to be impostors, nonexistant, insane, not the “right kind” or just needing to be shut up because they give the wrong public image, etc) in a totally different community right now. My guess on this is that people do this because they think they need to assimilate themselves piecemeal into the dominant culture, that that’s the way to gain acceptance. “We have to start with something that is more normal or acceptable to them, because they won’t accept it all at once.”

    That or, like Temple Grandin, they actually have internalized society’s prejudices against those members of their group they see as having “less worth” than them– they define their own worth in relationship to it: “At least I’m not one of THOSE types.”

    The problem with the assimilation view, that you have to “start them with something that is currently acceptable to them,” is that it presumes that once you get people to accept a certain thing, you can begin a “gradual process” from there of introducing new things. However, as often as not, once you get the particular kind of acceptance or the right you saw as the “first step,” people will just continue to find excuses to hold the door against you. “We already gave you this. Why are you demanding more of us?” “This is all you need. You don’t need any more.” “We can’t give you any more than this. It was bad enough that we gave you what you have right now. People will never accept the idea of giving you any more than that.” Or people will use the fact that you did gain that one step forward as an excuse for a concerted backlash– “We have to stop them *now,* before they can be allowed to do any more,” and roll back whatever rights you might have gained.
    The only thing I can currently I can think of to do about it is to try to make people aware of whatever internalized prejudices they might have that lead them to think that only the “ones like them” should be accepted or permitted to exist, and to challenge those prejudices directly– give them examples of actual people and their real lives defying the stereotypes. But that’s touching on a very sensitive issue for a lot of people, one they would rather not face up to, largely because some people do predicate their worth on being one of the “good kinds” and not the “bad kinds.”

  19. Mike PBJI wrote:

    How will the Evidence of Harm set come together with the Aspies for Freedom set? (I’d like to be a fly on the wall at that bbq!)

    LOL, me too.

    GRASP is working on a “memorandum of understanding” with Autism Speaks. I’m already sharpening my virtual shishkebab skewers for that one.

  20. A few random thoughts came to mind as I read this post …

    “People call me a feminist whenever I express sentiments that distinguish me from a doormat.” – Rebecca West, 1913

    And apparently a similar phenomon happens whenever any member of any population whose only role is to be good, quiet, obedient ______ (insert noun here) express any opinion at all. Nothing new here, unfortunately.

    This also brings to mind about the early years of feminism. I wasn’t around back then, but apparently lesbians tried to speak up for themselves in the women’s movement and were told, basically, to go away, the women’s movement was much too new to be able to deal with the issues of lesbians, too. Same thing when black women tried to speak up in the women’s movement about how issues of sexism often intersected in issues of racism in inseparable ways.

    And the LGBT movement isn’t immune to this internal “we all have to look alike and think alike to have any success with advocacy efforts” group think stuff. Some gay and lesbian organizations are not really welcoming places for bisexual people or for transgender people. Some gay activists are not comfortable being allies with the more “exoctic” members of the GLBT communities such as drag queens or members of the leather community. (I’m no fan of leather myself, but that’s because I’m vegan.) And of course, LGBT people of color and LGBT people with disabilities sometimes have trouble finding a place where all the identities they claim get equal time, space, or acceptance.

    These debates, of course, are always a challenge no matter what community they occur in. I’m brand new to learning about the autism community, but so far I’m not hearing anything that marks it as especially different from many other emerging (and older) communities in the kinds of debates it has or how it deals with those debates, or even (unfortunately) in how it tries to silence people who some people think shouldn’t have opinions at all.

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