If anyone gets here through the Channel 4 segment…

Standard

(Oops, I thought all British channels were BBC. Corrected now.)

I was interviewed, along with Laura Tisoncik and a few other people (some of them pictured during the shots of Second Life), through Second Life, by a reporter who approached us there.

Whoever edited the interview, edited it into something incredibly simplistic that I do not remember us saying.

Laura and I told the reporter at length, for instance, that autistic self-advocacy was really a branch of the disability rights movement. We described the social model of disability (which, while still a model and imperfect, is easier to explain than more complex things) which makes the question of “Is autism a disability or not?” nonsensical by definition. We did not divorce ourselves from the concept of disability even an iota, in fact we were continually reaffirming political autistic people’s connection to the disability rights movement. Neither of us trivialized autism into anything like a “lifestyle choice”.

She also talked to us at length about functioning levels, and we talked about how that concept falls apart as you actually get to know autistic people. We used ourselves as an example, where she is usually stereotyped as high-functioning and I am usually stereotyped as low-functioning, but there are things I can do that she can’t, and the differences between us are really pretty minor and superficial, it’s just that some people take a few small and superficial aspects of us and blow them out of proportion. Neither of us would’ve consented to a description of me as ‘profoundly autistic’ (or ‘mildly autistic’ for that matter, just ‘autistic’ will do nicely, and if you have to describe what we can and can’t do, describe it in terms of specific things, don’t describe it in terms of some overall level, because that always betrays much more about which skills the person labeling finds important than which ones the person being spoken of has).

Finally, and perhaps most importantly, we were asked specifically what our answer was to people from the National Autistic Society (and I know for a fact that the NAS is not monolithic on this issue, because Larry Arnold and Mike Stanton would both disagree with this idea) who claimed that the autistic liberation movement will make it harder for autistic people to get services. We pointed out the obvious fact that one of the top priorities of autistic adults, including those of us who are political, tends to be getting all autistic people whatever assistance we need to be able to live our lives in the best way possible. That we are in fact always calling for real, proper adult services.

In fact, can anyone read any of the following articles: And People Still Fail to Get It, Again and Again, The Conference Presentation I Won’t Make (But Want To), To the Kit Weintraubs of the World, Why I Am Angry, You Have It So Good, A Reply to the Initiator of the Hear Their Silence Rally, and Input from Autistics and Allies during the Hear Our Voices Campaign, and think that autistic people just don’t understand that some people want or need services? And these are just articles by various people from the website run by two of the people interviewed. Looking further would’ve gotten people even more stuff. Like, oh, The Reality of My Autism by Larry Arnold, who’s on the board of the NAS and is part of the autistic self-advocacy movement as well (and is another one trying to build bridges with the more mainstream disability movements).

But, in the end, they quoted a non-autistic member of the NAS but did not quote any reply to them from us, making it therefore seem like we actually had overlooked this area that we have very much not overlooked.

So, if anyone gets here because they heard of me or this website on Channel 4, be aware how much was mangled in the editing room. It’s way simpler, I suppose, to oppose ideas such as “disability” and “way of life” off each other, it makes for nicer sound bites, but it’s not what we said. Just as, in the other recent article in the UK about this movement, very few if any of the people quoted would’ve actually said something like that either (and there were other distortions in that one, like describing both me and AFF as if we were more prominent in our respective countries than we actually are). The “fun” part about being quoted or paraphrased in the media always seems to be that things always get either edited down to sound bites, distorted, or both, somewhere in the retelling, and then we have to answer to people who are angry at us for saying things we didn’t say.

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.

29 responses »

  1. Selective editing can be a pain in the posterior, definitely. Be grateful they didn’t ask you to hack into a computer network in 6 keystrokes, or say on what day the emperor Domitian ate his first boiled egg.
    I’m sorry the interview mangled stuff so badly, I hope people coming here will get a more rounded impression.

  2. I was appalled by both the article and the television news story because it was so obvious that they had missed the point or deliberately distorted the points being made by the autistics. I haven’t and I don’t intend to blog about either story, because it seemed to me that that would just perpetuate the dumb ideas in those stories, even though there were some interesting things in them.

  3. For the record it wasn’t the BBC you were interviewed by. It was Channel 4 or rather More 4 one of Channel 4’s digital channels which has advert breaks, so they probably tried to compress the article . Also 4’s been dogged by problems recently about it’s current affairs coverage, amongst other programmes.

  4. “the autistic liberation movement will make it harder for autistic people to get services”

    do people seriously believe that liberation will make it harder to get services?? it’s ridiculous— yes the more independent we are the less the gov’ will have to spend since community-based services are so much cheaper than institutions and such but WOW.

    three cheers for connecting it to the disability rights movement!

  5. Dear Amanda – firstly, the universal language of love for one another is not limited by speech or a society’s preferred language, and with that I would like to express my gratitude to your revolutionary work as an activist with a gesture of love and friendship, as a pacifist. We are different, but we have the same goal which is a wish for acceptance, within our diversity.

    I hope that you can rise above the limitations that are imposed on the media, too. A weak and very distilled report is better than no report at all, as those that do want to find out for themselves will come to your site to find the truth. Please forgive them for their ignorance. When Nelson Mandela left his island prison after thirty years of undeserved punishment, he, for a moment, got so angry and bitter and then made a decision that his emotions will not prolong his imprisonment any longer. He will be free.

    We need both activism and peace to reach the goal of acceptance of autism as just another form of diversity within a human that is hugely complex with a whole lot of other diversities. Like you and me. As someone with Asperger’s, I am autistic but I am also neurotypical and I have to find my place somewhere in the world, too. I visited your blog to explore my autistic side, but since then I honestly came to love you as a person and I look past your writings on autism and try to find the amazing person deep inside, with a magnificent mind and a powerful soul.

    The world will catch on. Because of you. But also because of the media, even if they get it wrong and leave out the detail that is so important. It just take time. We have to be patient with their baby steps.

    Peace to you and much love in friendship.

  6. Oh, I thought all UK channels were BBC too. Oops. What else was I going to say… Um…

    oh yeah. I wonder if it’s not obvious to people that something like joel’s excellent “this way of life” website doesn’t imply that some “ways of life” are born, not chosen, though that doesn’t make them inferior to other ways (that are also not chosen). i mean, it’s not as if non-autistics are THAT WAY ON PURPOSE either. it’s just the way *their* wiring turned out.

  7. Anyway

    Fuck Channel 4

    They are the people who thought that “make me normal” was adequate coverage of autism, and whose bloody so called disability adviser actually said so.

    We will do such things, what they are yet I know not but they will be the terrors of the earth.

    They ain’t seen nothing yet and if one of those terrors of the earth where direct action against there bloody media machine I for one would want to be there.

    Larry

  8. Oh I forgot

    7 pm 12th September City Hall London.

    Be there (unless you support AFF apartheid and that is)

    I have a warning for AFF global warming will swamp your island in Dubai,

    Aspergia is dead. Long live liberation, real liberation.

  9. Ok, quick guide for the main channels in the UK:
    There is the BBC, which has been going for nearly 70 years now.
    Then there’s ITV, which stands for Independant Television and has been going for about 40 years (or a little over).
    Then there’s Channel 4, which was founded in 1982. I think Channel 4 had some connections with ITV, as they used to say “over on ITV”, or, over on Channel 4″ dependant on whether you were watching the other side. I can’t remember if they still do as I don’t watch much tv.
    Then there’s Channel 5, founded round about 1997.
    There are various digital stations as well, but I don’t know which are UK based.

  10. Hi

    I am the Joshua Muggleton featured in the program. I would just like to add that I wished I could of heard Carol’s concerns
    so I could have responded saying that I still believe funding is needed
    to help us adapt to the NT world, but that it is an change in attitude
    in the general public that is needed along with better education, and NOT that we don’t want help from
    organisations like the NAS when we ask for it. I guess I still have a lot to learn about the media…

    Appologies

    joshua

  11. At least I can say for the Guardian article is that what they quoted of me was what I said, and the picture is not there copyright but mine and only licenced to them.

    TV is a minefield, my first experience was when my brother and I took my mum to appear on the “link” programme, part of the disability slot and for her 15 minute or so appearance it seemed to take all day, with the presenter, Sian Vesey endlessly bothering about how her jewelry appeared on the screen. I think in comparison my mum was a true pro, word perfect. As for me and my brother, we spent our time in the hospitality suite getting horribly drunk and watching it all on the monitors.

    The NAS does have much to answer for, but then people like Mike and myself do what we can.

  12. Larry: Be there (unless you support AFF apartheid and that is)

    I wish I could. But not until it happens in Birmingham, or Manchester, or Leeds, or Edinburgh, or Glasgow. Or even Cardiff, though Arriva trains Wales might get a nasty shock if it were. Anywhere which isn’t London.

  13. Yeah Baba Yaga I am aware of that and I think everyone who is involved in it is, it will expand beyond London, London is not convenient to me exactly but it is a good base to start so far as attracting people to a meeting.

    We are looking beyond London and the UK but as Mao (the monster) Tse Tung said “every journey begins with the first step”

  14. heh…….I was just in London for vacation recently………well, Athena was, at any rate.

    I’ll be boiling in Florida on september 12th…….and probably in class, too……..

    I love school but certain things about it are such a bother……..

    Ivan

  15. Pingback: The Observer’s bad autism science spreads to Channel 4? « Holford Watch: Patrick Holford, nutritionism and bad science

  16. Yes that is exactly how the notion that 75% of all autists are retarded found its way into the scientific literature, because once something has snook past the sentries it stays in there going round and round until the next big meme pushes it into the background.

  17. Good observation, Lawrence…and so visually portrayed that I instantly understood your meaning….I do appreciate the many comments on
    this blog…I learn a lot here….

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