21 January 2012

Having Loud Hands

Unlike a good, large number of people in the autism community, I had never heard the phrase "quiet hands" until fairly recently, when I read this article by Julia Bascom, which so eloquently describes the abusive side of Applied Behavioral Analysis—commonly touted as the most common "evidence-based" intervention or therapy for autism. I almost cried.
"When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed."
— Julia Bascom
Quiet hands. It means to be still and proper. It means to stop flapping or squeezing or flicking or rubbing. It means, in translation, "Stop looking so damn Autistic already!"

It is a quick, easy way to silence Autistic people. Especially Autistic people who don't talk, for whom behavior is unquestionably communication.

Having quiet hands means giving in to systemic ableism and letting external standards of "normality" and "acceptability" dictate one's behavior at all times. Having quiet hands means hiding being Autistic and suppressing natural ways of speaking and moving. Having quiet hands means shutting up and putting up and giving up.

I don't want to have quiet hands. Ever.

And that's why I'm writing about the Loud Hands Project. Loud Hands are the opposite of quiet hands. Loud hands means to be Autistic and proud. Loud hands means to move and speak and act as comes naturally. Loud hands means to eschew externally defined ideas of "normality" and "acceptability." Loud hands means to be comfortable in being Autistic.

It means moving beyond "There's something wrong with you."

The Loud Hands project, spearheaded by Julia Bascom of the "Quiet Hands" piece and sponsored by the Autistic Self Advocacy Network, is a transmedia project that seeks to give a broader platform to the diversity of voices, both literal and metaphorical, of Autistic people throughout the community. The initial $10,000 necessary to fund the publication of an anthology of essays by Autistic people was reached in an amazing nineteen days (just under three weeks), but there's plenty more to come.

Julia has described the next three benchmarks for future funds:

Benchmark 1: $15,000 “About us, without us”
“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.

Benchmark 2: $20,000 “Welcome to the Autistic community”
- With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012—Autism Acceptance Day.
- Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.
- Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

Benchmark 3: $25,000: Connecting to Community Together
To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

This is why the Loud Hands Project is important. So that the next generation of Autistic people will have a precedent for having loud hands and embracing themselves as complete human beings with value and dignity as Autistic people. So that there will be no more "There's something wrong with you." So that little by little, we can strike down the bricks that have institutionalized ableism across our society, in our schools, in our policies, in our everyday interactions.

Coming only days in the wake of Martin Luther King, Jr. Day, it is imperative to remember that the fight for civil rights is not over. Autistic people are routinely disenfranchised, discriminated against, and subjected to "quiet hands." Our voices are constantly de-legitimized with all manner of straw-man and no-true-Scotsman fallacies not merely online but at conferences and in IEP meetings and in policymaking. Our rights are routinely ignored.

Loud hands are necessary. In the wake of enormous volumes of disinformation and misinformation about autism and who we are as Autistic people, in the deluge of vitriol and cacophony displacing any notions of community, we need to have loud hands to assert both the discrete individuality of Autistic people and the group cohesiveness that comes with Autistic culture.

And this is why I am supporting the Loud Hands project -- to empower Autistic people to be leaders now and to provide a role model for the next generation of Autistic people. They could be your children. Let's work toward a world in which your children will face less discrimination and stigma. Let's work toward a world in which your children can have pride in being who they are, and can find stellar examples of activism, advocacy, philanthropy, and self-fulfillment in today's generation of Autistic adults and youth.

That's what money to the Loud Hands project will do. It will make these projects possible, and expand the platforms that currently exist for Autistic people to express themselves and seize the mantle in our own advocacy. The Loud Hands project will be accepting donations for the next two months -- through 15 March 2012, and can be made here, which is also where you can watch the project's introductory video! (And yes, I made a donation -- better to put that money toward this phenomenal project than toward food not from the campus dining hall.)

Another way you can contribute? The upcoming anthology is looking for Autistic people to contribute essays. (Guidelines here.) And yes, I will be earnestly writing a submission. (It might even be good.)

9 comments:

  1. It's not possible to watch that video without feeling uplifted.

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  2. hmm.... I wasn't sure how to respond. I vented a bit on Facebook. Thought about it. Pondered it. And then came back and re-read your post with a fresh head this morning. Then I decided to comment.

    I've told my autistic son to use "quiet hands" many times. Not to tell him to be less autistic, but as a means to tell him to be quiet. Just like I would tell my younger son (non-ASD) to BE QUIET when he's incessantly talking. Or, if my son's flapping/clapping hands are distracting those around him (just as my younger son's mouth could be distracting).

    I most times ask my son to use "quiet hands" when he's in the midst of a "fit" as I'll call them oftentimes. It's a calming mechanism. It seems as though once his hands are "quiet" that he calms down more effectively.

    Just thought I'd show my point of view. That being a parent of an autistic child :)

    Have a great day,

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    1. I did want to add that I think your blog is very well-thought out and insightful and added it to my blogs I read list on my own blog :)

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  3. I am an Autistic parent. I would not tell my child to use "quiet hands" as that is targeting an Autistic-specific observable characteristic. I do hope you endeavor to determine what the "fit" is about. If he actually FEELS calmer, maybe that's helping him. If he's just trying to stuff his physical actions because he knows he's been told "quiet hands," then I am less likely to think that's a good thing. I am not his parent though. I'd write more but I am in the middle of being a (Autistic) mom right now.

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  4. Suppressing what comes naturally causes intense damage down the line. Trying to please people by looking like what they want you to be, that hurts us, even if it makes our parents feel better.

    And that is why my hands will be loud. Because I am who I am meant to be, just as your child is.

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  5. Jenn,

    I want to first address how you opted to close your comment before delving into your situation.

    We obviously know you are a parent of an autistic child or else you wouldn't be talking about your autistic son. To me, I have always seen this argument used to silence Autistic adults as if they don't know what it's like to be a parent. This is also a problem with privilege. Your privilege seems to state that your point of view is quite different because you're the parent of an autistic child, which frankly is not true. I'm not saying this is what you meant, but it is definitely the way it is seen.

    On to the topic at hand, /Quiet hands/ you say are your way of telling your child to be quiet when they're flapping or clapping because it's distracting. I can see clapping as distracting in the same way that your other child's voice is distracting. I can think of only one circumstance that I have used quiet hands with my Autistic son.. and that's when his hands were loudly rubbing my skin for his sensory input that was putting me in sensory overload. Quiet hands was meant to actually get him to stop rubbing me, not as an overall silencing technique.

    But that's just my point of view as an Autistic parent of two Autistic children.

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  6. I am the mother of an autistic adult woman who will be 40 in December. She still lives at home with me, her dad, and two siblings who have Down syndrome. We have eight children in our family, all adopted. Our daughter with autism, Katrina, was adopted by us when she was seven. She is pretty independent at self care. She speaks in short phrases or in single words to make her needs known and to actually have some conversations. She goes out into the community with care givers for 6 to eight hours three days a week. This enables me to have a small part time job. I am very thankful to be her mother, but she does have some behaviors that drive me nuts. I have tried to sort out why she does them but she is unable to answer why questions. One is that she cuts her fingernails down to the quick, sometimes until they bleed. She finds fingernail clippers every where, including shoplifting them. I have a very large stash of fingernail clippers due to this behavior. She doesn't want to always cut her nails but she can't stop herself, so if she finds clippers or scissors in the house, when she is done with them, she throws them behind the stove or gives them to me to lock them up. She has to use the bathroom in different places if we go any where and if she doesn't get to use it she has been known to run down the street, find a door that is unlocked and go into stranger's homes and use their facilities. We have keyed deadbolts on all our doors, because she will run across the street without looking. She also has no modesty, and leaves the bathroom door open unless she is verbally prompted to close it. After her bath if clothes are not immediately available she will walk down the hall in her birthday suit. We have tried to help her by always having clothes, or a bathrobe available but if we don't verbally prompt her she does her own thing and sees no reason why things should be any different. What I'm trying to say is that,even though she is probably very intelligent, some of her behaviors are unsafe and she needs as much supervision as a three year old. It is easy for a person with high functioning to argue for behavioral freedom for all autistic people. Try being a caregiver or a parent, and try being responsible for someone else 's survival. I think you might do whatever it takes to keep yourself sane and your protegee safe.

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    1. First of all, try being an Autistic person. We're speaking from the ultimate experience - you've lived with us, we've BEEN us (and if you asked many of our parents, caregivers, etc. if they thought we were "high functioning" enough to have the kind of behavioral freedom advocated here, they would've said no too in many cases, past and sometimes present). We're saying what we do to make sure that other people have the things we didn't, or aren't subjected to the things we were. What's so wrong with that, when it's Autistic people going to be in the end living Autistic lives?

      Regarding the fingernail thing - I do the same thing. It may not be for the same reasons (it's a mixture of having been a pianist for many years; sensory discomfort; and prevention of self-injury when it gets particularly bad), but I've done the same thing of cutting too far and bleeding... and the world doesn't end. I feel pain, I wash my hands, I move on with my life. Possibly, instead of taking them away from her and leading her to find and even steal more, let her have a pair at all times? If needed, maybe find something besides nails - like pieces of paper or a malleable object - that she could use scissors or clippers on if it's a "keep your hands busy" sort of thing. Giving someone more control over their situation and not less may actually ease anxiety and make someone stop doing things. At least, that's the case with a lot of us.

      The bolting to the bathroom thing - it might be GI issues (which are common for us, though not necessarily for the woo-woo reasons that a lot of people suspect). It also might be because there's no shorthand known and/or available to convey the need IMMEDIATELY in order to make it work, since some of us don't really get it that we need to sleep/pee/eat/etc. until we REALLY need to do it (and this also is assuming that, with all caregivers and the like, her expression of her needs has been consistently respected and worked with rather than ignored or discouraged... why do something that has been proven not to work, right?). This is the kind of thing that makes me really wary, to say the least, of seeing autistic people's actions as "behaviors" in the sense of volitional things that should be prevented, because often we're dealing with pressing needs in the only way we can, and the action taken to prevent us from doing so without giving us workable substitutes, with the implication that we're doing the wrong thing by addressing our needs at all, can be really harmful in and of itself.

      With the other stuff... would bath towels work? Alternately, is there a bathroom she could use that a) has a linen closet that could keep a ready supply of clothes (preferably kept open so as to prevent "out of sight, out of mind" executive functioning issues) and/or b) is far away enough from other stuff in the house that she won't be disturbing others in the house (I'm sort of surprised that being naked and informal about bathroom use in one's own house is considered a severe behavior, but, that aside...).

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    2. I'm no expert but the nail clipping thing sounds like OCD. I have OCD. I get very anxious if I can not wash my hands, don't like using other toilets, etc.

      The thing about OCD is you might realize it's irrational and keep doing it, or you might justify it with some not-really-logical reason and decide it makes sense. If she's giving you the clippers, she knows it's bad and wants to stop. I keep reading that cognitive behavioral therapy works but I've been too chicken to call a psychologist until now.

      I hope you keep seeking out other autistics until you can figure out how to help her.

      I don't know if I have A.S.D. or not but I can sure identify with the GI issues. When I have to go, I have to GO.

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