Being #posAutive: Supporting All Friends of Autistic People

Being #posAutive: Supporting All Friends of Autistic People

EDITED to include ischemgeek‘s words (underlined below) which explained things more clearly and succinctly than my own.

EDITED to improve the focus of this post on my main point by removing the direct reference to a tweet by JRE.

During yesterday’s #boycottAutismSpeaks Twitterbomb I read a tweet that criticized the action for being against a target. Now, I support the criticism and boycott of Autism Speaks for a number of reasons which I explained in my previous post. But it started me thinking about the many individuals and organizations who work hard in support of Autistic people by providing information and assistance, and what a positive force they are.

My idea is to have a day where we shout out about all the great work these people do on our behalf. A “Thanks for being allies/thanks for speaking out/thanks for your voice/these are people you should be reading” thing.

I realize I’m not going to be able to put something together without help, so I’m asking. If you want to help me put together an event to celebrate all the many people who work to improve the lives of Autistic people then please get in touch.

Together I hope we can broadcast our message loud enough to drown out the likes of Autism Speaks. Who’s with me?

22 thoughts on “Being #posAutive: Supporting All Friends of Autistic People

  1. Regarding JER’s tweet: I think yes and no. I think some issues, speaking for thing A is the same as speaking against thing B, just with a different tone. Speaking for inclusive classrooms speaks against segregation by implication, as inclusive education and segregated education are to a large extent mutually exclusive. Speaking for autism positivity speaks against the tragedy model by implication, as autism positivity and tragedy model are mutually exclusive.

    Other issues, you can speak for a thing without speaking against another. Speaking for increased focus on autistic voices does not speak against parents’ voices. Speaking for increased respite services does not necessarily speak against kids’ interests (context-dependent on this one, obviously). Speaking for increased ethical overwatch of autism therapists does not speak against therapy services in principle. And so on.

    Plus, I don’t necessarily think that confining oneself to speaking for things is the best way to do a movement. People who speak for stuff and take on a more “here’s how to make things better” approach are important, yes, but so are the angry, “here’s what’s messed up” types. No rights movement in history has ever succeeded solely due to the efforts of the more polite and less critical voices. The critical and angry voices have an important role to play: They bring attention to the fact that problems are problems, which enables the “how to make it better” types to do their magic. If people don’t realize that Thing A is a problem, why would they listen to a person talking about how to fix it? Why would you want to fix it? There’s nothing wrong with it, is there?

    Additionally, there’s the issue of creating an inaccessible environment. If people in the bullying issue say “must be this polite to be listened to,” I would be unable to speak on the issue. Why? Because my experiences with bullying were so painful that I can’t talk about it without getting angry, and I can’t get angry without getting curse-y. The most vulnerable and harmed by the status quo are thus silenced by those who prize politeness and the comfort of the privileged over accessibility and the voices of the marginalized.

    … So, I guess what I’m trying to say is: Yes to positive messaging, so long as people don’t hold it up as intrinsically superior to more in-your-face approaches (or vice versa), or as some sort of moral ideal that all should aspire to, regardless of whether or not they’re actually able to do that. Each compliments the other, and some of the most vulnerable simply can’t talk about a thing without getting negative and angry.

    Sorry to go of on a monolog, but I’ve seen this discussion pop up time after time after time in various communities and movements, and what it tends to boil down to is that the privileged people in the discussion (parents, doctors, therapists, Autism Speaks, etc) don’t like getting yelled at and tend to feel wronged when they are yelled at. Because of this, the higher-profile/more political marginalized people worry about alienating the privileged people they need as allies. So both the privileged and the political pressure the people who are hurting to shut up about their hurt by portraying positive messaging and politeness as inherently more moral/rational/intelligent/what have you. What people pleading for palatability tend to fail to realize is that the answer isn’t to get the people who are hurting to shut up, it’s to fight the system that’s making them hurt in the first place. The complainers aren’t the problem. What they’re complaining about is the problem.

    BUT. That said. Positive messaging is a good thing as one tool in the activism box. I just worry when I hear people arguing against it because I’ve been on the “plz shut up because you’re upsetting the people in power” merry-go-round too many times. I don’t think that’s what you’re going for. Therefore I’ll support your idea. Just wanted to voice my concerns about JER’s stance.

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    1. Thanks for such a comprehensive response. I agree with your position that there is a place for arguing in favor of positive aspects right alongside arguing against the negatives. (And when the subject is Autism Speaks it’s darned difficult to find any positives!) The two approaches complement each other.

      Each has its dangers: positivism can end up a rose-tinted love-fest divorced from reality, while being anti- can devolve into a whining, self-pitying moan.

      I think we’re fighting an uphill battle and we need all the tools at our disposal. All I want to do is raise the profile of and thank people who are helping the cause of autistic awareness and acceptance.

      (And I am regretting ever mentioning JER… That’s proving to be a distraction.)

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      1. Yeah. That point is good. A “Thanks for being allies/thanks for speaking out/thanks for your voice/these are people you should be reading” thing is a really good idea. I support that unreservedly. 🙂

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    2. Ha. Ischemgeek, Your ‘monologue’ is one of the best things I have read in a while in the debate ABOUT the debates. You totally nailed it. I too am over the wars that are raging inside the so-called autism community, and it would be a shame if the common goal – make life with autism better for everyone – will be lost over infighting and group splitting but we are all different and have to accept different perspectives and experiences – and emotions – from others in the progress.
      I wished there wasn’t such a communication breakdown in all forums you come across, but there ARE autistics whose anger is VERY justified and there are parents I want NO association with because what they are doing is wrong, immoral or physically dangerous to those whose lives we ALL seek to improve: the upcoming generations of autistics.
      I am too thankful to autistic adults for the insight and information they give me for free online (as opposed to all professionals who I have to pay by the minute and who often disappoint with too little insight..) to be bothered by form or even the very few that might have been traumatised so much by their experiences that they have lost touch with reality.
      Yes, often there are misunderstandings and we should all chose our battles but every time I think like that I come across someone or something like this:
      I read about a study from north California TODAY that 9% of parents polled use the most dangerous “alternative therapies” to “treat” or ‘cure’ autism in their kids. We are talking cheletion, bleach enema and the like, not just gluten free and meditation or whatever. And this although they have access to therapies that are supported by science.
      I AM against that. It DOES make me angry. Yes, putting a focus on positives for a change is good, but more than for any other condition, disorder, disability I know of, there are horrible things going on, abuse in homes and institutions, not to mention the very bad propaganda that’s around, the lack of inclusion, the mantra of ‘awareness’ instead of working on acceptance and we need to continue putting the finger on where it hurts I believe.
      If you’re not upset, you’re not paying attention – sounds about right to me.

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      1. Anger at abuse like you both describe is TOTALLY justified: it upsets and angers me when I hear or read about it. Raising awareness of such abuse is an important part of stamping it out.

        And I have so much gratitude to those who have made me aware that such things are happening, and to those who are working to put an end to similar abuse.

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      2. Thanks. I’m sorry I can’t respond more thoughtfully, but I wanted you to know that I did read your post & I appreciate it. Anxiety isn’t really letting thoughtful-response stuff happen reliably lately.

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  2. You know…yes and no. There are many ideas in the autistic community I have no problem speaking up for without being against others.

    But speaking up FOR autistic people’s human rights and entitlement to be treated like real people…pretty much requires me to speak against the rhetoric and values of Autism Speaks. I have no problem whatsoever being steadfastly against the promotion of fear and hatred of autism that they stand for.

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    1. I seem to be having trouble with getting my ideas across clearly today… obviously my own fault for rushing into all this.

      All I am suggesting is promoting and thanking organizations and individuals who are having a positive effect on the lives of autistic people around the world.

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      1. I think that’s a good idea. Really .
        I wrote my own long, upset reply to ischemgeek (while you answered too…) under the impression of the article about the study I read today (via the thinking person’s guide to autism) – and the comments to it on facebook where parents felt it ‘lumped’ the more harmless alternative therapies, like prayer, special diets etc, with the dangerous ones – which was not the case. Defending their gluten free approach to autism (…) the core result of the study got lost in sloppy reading and defensiveness! Almost one child out of ten treated with tortorous abusive “therapies” SO ANGRY!!

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  3. I love the idea of calling out #posAutive allies! And, as mentioned in the other comments, doing so implies no judgement and makes no statement about any other initiative in the community, such as #boycottAutismSpeaks. It’s just an opportunity to show that we can be supportive, friendly, approachable and – this is important – grateful. While this doesn’t imply anything negative about the boycott, to be seen as a positive force is important in convincing those people who currently give to Autism Speaks that we and our preferred charities are capable of doing something good with the money.

    You know we can, and I know we can, but if some well-meaning person’s first experience is to discover from us that they have been supporting a hate group, they naturally question that information and our motives. If Autism Speaks promotes hate and they have supported that organization then the implication is that *they* support hate. Whether it’s deliberate or benign, people don’t like to discover that. They’d prefer to think we are exaggerating or that we simply don’t know what we are talking about. Our message that Autism Speaks is a hate group tends to make well meaning supporters of that group adopt an adversarial position to us. Even if that is unavoidable, we must recognize that effect and include in our strategy the additional work required in the relationship to get these people back to neutral before we can persuade them to become allies. Our ability to do good and to provide a positive climate in which to interact will be crucial in convincing those people we wish to reach to consider our message.

    This is why I was upset when I Tweeted to Holly Robinson Peete and some of us responded that anyone working with or for Autism Speaks is the enemy. She supports ASAN, AWN and others. When JRE worked for Autism Speaks, even though he was advocating on our behalf, trying to change the org from within, he received death threats. If we publicly reject people like JRE and HRP, what can the student volunteer supporting their local A$ event expect we’ll do to them in reprisal? What does the parent whose only support has been A$ think of us?

    I have my own post on this topic so I’ll restrict my comments here to why I like *this* post so much. Ultimately, it boils down to us walking the walk. If we say diverting money and resources away from Autism Speaks will produce good outcomes then people need to see and experience positivity from our community, and it must be at least as strong a message, preferably stronger, than the negative messages we send out if people are to be talked down from the adversarial stance they adopt when learning they’ve been supporting a hate group.

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    1. Thank you! I agree that it is almost impossible to convince people of the merits of your position when all they hear just contradicts their position. They often simply refuse to listen or believe, and in some cases it even strengthens their resolve.

      There are parallels between A$ and the NAS (National Autistic Society) in the UK. The NAS has adjusted how it supports autistic people over the years following advances in what is considered to be best practice. No, I don’t believe they are perfect, and they might not respond as quickly as we would all like, but I do believe they are doing a good job.

      I would like to see dialog with Autism Speaks, rather than confrontation, with the aim of helping them to move forward to become more like the NAS. Yes, I believe it is right to draw attention to their faults. But if we are to make headway I think we need to be constructive in our criticism.

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  4. This is a great idea. Highlighting people and organizations who do the right thing is good practice in general, *and* it will show people there’s an alternative to Autism Speaks.

    I think we also need to provide resources ourselves. Some of the infographics being tweeted yesterday (on echolalia, for example) were a good start. I know there’s a parent toolkit in the works and I’d like to see that go out as soon as possible. What resources would you like to see developed?

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