My response to the “Articles of Understanding”, on video

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The following is my response to the Autism Speaks/GRASP “articles of understanding”, put onto video.

Edit: And now that I know how, here’s a captioned version (sorry for the asynchrony of the captions, they were synchronized when I made the video and YouTube mangled them):

Here’s a transcript, since among other things I can barely edit a video (hence the very short length and lack of detailed writing, at least that’s one of the reasons) and don’t have the expertise or software to caption one. The video just basically shows me sitting on a couch as I play the recorded message on my speech synthesizer, and then at the end my cat decides to jump up and nuzzle me.

This is my response to the Autism Speaks articles of understanding with GRASP, the Global and Regional Asperger Syndrome Partnership.

I am a non-speaking autistic woman. While I do not agree with functioning labels, I have been labeled low-functioning in the not-too-distant past and am considered severely disabled. People who look at me without seeing me type often think that there is nobody inside me. I have many of the difficulties described in Alison Tepper Singer’s article about her daughter, and more that she did not describe.

It is wrong to say that your own child has no skills. It is wrong to go on a national video and say you have considered killing your autistic child. My parents faced worse hardships with less privilege and never once thought of killing me. It is wrong to condescendingly assume that autistic self-advocates have never heard of those of us labeled low-functioning, and that somehow the so-called low-functioning among us have no skills and need a cure, and that all you needed to do was say we exist and then everyone would understand what you want to do to us.

Our viewpoint was not represented in this “exchange of ideas” between GRASP and Autism Speaks. All the two of you have done is repeat caricatures: The autistic child happy in a world of her own versus the autistic child needing to be cured, high-functioning versus low-functioning, Asperger versus autism, able versus incapable. You have equated differences in the way we function with differences in the amount of rights we deserve. These things are not how we live, and you have avoided the substantial issues, including the fact that it is not only those labeled high-functioning who oppose cure.

Your articles promote misunderstanding, not understanding. Both of you have essentially told the world that I and others like me do not exist. I am here to tell you and the rest of the world that we do.

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. I see you and your cat are quite adept at communication.

    Thank you again for this. I hope you can do at least a few more videos. I’m sure it’s hard to edit and so forth, and you don’t want to become a self-narrating zoo exhibit, but this is very impressive. I think it will make a big dent in some people’s preconceptions. The content is excellent.

    I hope that Ms. Tepper-Singer and Mr. Carley, as well as Dr. Ami Klin (as Michelle pointed out, elsewhere) will watch it.

  2. I’m going to put my fortune-teller’s hat on for a moment, and suggest that their response might well be along the lines of “well, she couldn’t have done that al by herself! Someone must have recorded that onto the synthesiser for her!” Bleh.

  3. You video is a very good juxtaposition of exactly what the people you react to are trying to separate.

    Hey, just an idea… You should post the whole text of the video into the comments or something.
    I donno how any of your friends with auditory processing problems (can’t remember but imagine that you have some) can understand your communicator. I think it’s kinda hard to hear your words through that machine voice, at least thru video…

    PS: Your cat is so clever. =^._.^=

  4. Yeah. On my next video (or at least, the one I’m working on at the moment) there’s a part that shows my very rapid typing (as opposed to my one-fingered typing). I’m quoting from someone and decided to aim the camera at a computer screen as I typed the quote and its source, rather than to just play the quote on my speech synthesizer.

  5. Oh and by the way I discovered that yes in fact YouTube’s conversion from the videos I sent in to the pictures, does leave the sound slightly out of sync with the picture.

    WRT the words thing, I’d rather get software to caption videos. Does anyone know of cheap or free software that can be used to caption AVI videos?

  6. Never mind, I miraculously figured out how to caption it. I’m now uploading a captioned version to YouTube, and am going to upload captioned versions of all my other videos, then caption all my videos from now on. Videos without captions are difficult for me to understand as well, I just didn’t have the software before.

  7. WARNING THIS IS OFF TOPIC AND ECCENTRIC

    But where are the electricity pylons?

    What good is a video without electricity pylons said Alice (well she didn’t but she ought to have done if they had such things back then)

    I make a point of ensuring there are the aforesaid pylons in my videos, in fact you might say there is a deeper significance in that for without the electricity transmitted thereby (Tesla and broadcast power notwithstanding) you wouldn’t be making videos or watching them over the internet at all.

    Well there is an end to it all as the ice melts and whatever, but for now, they are wonderful things testaments to engineering longevity some of them have been standing since before the second world war.

    Well that is my message to Micheal Carly, go out to the Catskills and see those pylons climbing over the hills, it will be better for you than talking to Autism Squeeks

  8. Actually in my video, the one that no-one seems to be buying cos it ain’t self narrating zoo, I am reading from a script, I do not attempt to disguise the fact that I am doing so either, however there is a certain artifice in that I am creating a news studio environment to do so. I notice even so on close examination, cos I have had to watch this thing frame by frame in the editing to catch the glitches, my right hand is very subtly not at rest and there are subtle other neurological mannerisms such as the way I jerk my head from time to time.

    I remember the first time I ever saw myself on video back around 1975 and I thought “what is that” I was fascinated by the apparition.

  9. I think that for this particular subject, a video is great. Sure, some people seem determined to stick with the stereotypes of the giant gap between autistics who can communicate in a way considered “high functioning” and people who’s appearances and behaviors are considered “low functioning”. But by making it obvious that you are both, you make it harder for them to cling to those sterotypes. And there’s a good chance that people who aren’t dogmatically locked into that view will change their minds.

  10. What type of sign language are you doing? I know a little bit of sign language, but couldn’t recognize any of the words, but you are sure very quick at it. And, what a cute cat! It seems like your cat has more understanding than a lot of people do in how to treat everyone!

  11. Hi Amanda. I thought you might like to know that all the posts in the “Sixteen Volts” blog, where obnoxious pro-eugenics twerps were ridiculing you a few months ago, have been deleted with an abject apology from the blog owner for, in his own words, “this ugly little blog that brought out the vilest in me and has now left me in deep shame for the rest of my life.”

    http://sixteenvolts.blogspot.com

  12. Hi Amanda,
    A friend of mine (you know her as Winnie) and I were discussing you today and she said you might want to hear my comments. I wasn’t sure how to contact you so I’m hoping you don’t mind my leaving this on your blog.

    I see so much of my daughter in you! She is almost seven years old and is considered moderately impaired. She is non-verbal but quite good with PECS. She is very affectionate and loving. She is also timid and a bit shy, though she loves to explore at times. From outward appearances (due to hand flapping, tapping and other stimmy behaviors) one would not expect much from her.

    I have learned from you (and please don’t take offense) that outward appearances are misleading and can conceal amazing people. You have given me great hope for my daughter and I feel ashamed that I ever viewed her capabilities by her outward appearance. Thank you for speaking out and putting yourself forward.

    All the best…

  13. Amanda,

    I have never thought of you as low functioning, and I am uncomfortable making that distinction, whether it is about people I know or others I don’t. Thank you for your articulate criticism. I too believe both authors were speaking past one another, using cliches common in the disability “industry.” Thank you for your perspective.

    Roger N. Meyer
    Author, Asperger Syndrome Employment Work Book, and forthcoming “Peer Led AS Support Groups – What’s in it for Me?”

  14. I think the video was also moving – the communication you had with your cat was wonderful. I guess what I’m missing – because I truly am ignorant to this is – is it you really typing the description etc. So you have excellent language that you are able to type – yet you can not speak? Is that right, or did someone type the “description” to help us better understand. Because if it is you yourself typing that description, and your language is that amazing yet you can not speak (non verbal) then i really want to learn more about how the brain works – that you could acquire such amazing written language – yet nothing verbally.

    I hope this didn’t offend, I just really want a better understanding.
    Thanks.

  15. 1) I like your hands. They’re beautiful, IMO.

    2) That bit at the end with your cat made me wish once again that I weren’t allergic to cats.

  16. Pingback: Autism Vox » Appearance and Reality: Apuleius’ The Golden Ass and Disability

  17. I am a mom to a “low-functioning” autistic daughter who sympathized with those mothers in the Autism Speaks “Autism Every Day” video. While I have NEVER considered killing my child, I have had days where I considered killing myself (I have chronic depression and was a suicide risk from my early teens untii I was finally put on the anitidepressant Prozac in my 20’s). My daugher, Judy, is 12 now. Not potty-trained. Non-verbal. Very tactile defensive (washing and brushing hair is a highly coordinated dance between my hands and her bobbing/weaving head). Constantly stimming on her videos and DVD’s. I don’t doubt she’s capable of amything. (Anyone that has the reasoning ability to climb from a picket fence over a privacy fence and back again in rollerblades to retrieve what was tossed over said fence is quite capable or at the very least extremely agile). That all said, I understand those mothers’ frustrations in dealing with a child who cannot speak, is prone to very violent outbursts (Judy once kicked my glasses off of my face and broke them outside of Blockbuster because we’d already been there and I didn’t want to go through the motions of renting a movie we already owned), who can’t participate in “normal” family activities, who doesn’t sleep, etc. and so on.

    I love my daughter dearly. My anguish is my inability to understand her. I don’t want her cured. I want her to have the ability to communicate effectively. We’ve tried sign language. We’ve been trying PECS for more years than I can remember. Her only effective means of communicating are to pull me to what she needs or to bring me what she wants. This will not help her when I am no longer here to do these things for her.

    I am so glad for you that you can use an augmentation device and a computer. But my heart aches with the fear that my daughter will never be able to do anything like that and that she will always be secluded by her inability to make herself understood.

    I was thankful for the “Autism Every Day” video and I passed it on to my family and friends, simply because that showed a 13 minute snapshop of my life. I accept that. I am also thankful for the research that Autism Speaks supports to find the cause of autism.

    My daughter is not diaabled by her autism. She is disabled by her inability to communicate. That is my only definition of “disability” right now. I’m sure many people would have issue with that.

    Were Judy able to speak, via words, augmentation board, or computer, I would be the happiest, proudest, and probably most relieved, woman on earth.

    Maybe the motives behind the “Autism Every Day” video weren’t the most altruistic, but, trust me, most of the images, if not all the sentiments, are my daily life and I’m glad someone showed in images what I am unable to convey in words.

    Lisa Swortwood

  18. I actually could identify with some of the experiences in there, although not from the perspective of the parent of course. That doesn’t make it a good video. There are good and bad ways, responsible and irresponsible ways, to approach any given topic. It is not the topic of the existence of certain kinds of people that bothered me, but what the actual portrayal was. (And I don’t mean the traits of the specific people, I mean the tone of the entire thing.) It will and has been used to harm people, badly.

    I see a more social than individual-functional view of disability than you appear to, so my answer to that idea would be different than both your answer and the “we’re not disabled, we’re just autistic, that’s different” answer that I hear often and disagree with as well.

  19. Hi,

    I myself am not Autistic, but was reffered to your blog, by a friend.

    Well, as someone who has faced several misunderstandings, in other ways, and just as one person to another, I wanted to let you know how much I admire the heartfelt way you responded in the post!

    The truth which you expressed I’m sure is an inspiration to so many others! Bravo, for speaking your mind! Bravo!!

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