Verbose Adam

Filed Under (Adam, Communication, Computing/iPad) by Estee on 25-04-2013

I have to write so much for school that I don’t often get to write about daily life in a few rambling sentences. Spring is here, the pool is open and Adam, after his 11th birthday has had another burst of verbosity – forced out single words, a phrase, but lots of telling me about things at school or how he’s feeling. It’s particularly enjoyable when he says words I would have never imagined were in there. But like Anti says in Wretches & Jabberers, I think Adam is made of words, at least I think it’s neat to think of it this way; despite the difficulty of expression, he’s got thousands swimming in his head; it only makes sense since he was reading them, sometimes out loud, while hanging on the side of his playpen, reading the titles of the book spines on the shelf.

We’ve been typing every day – from stories, play and he types a lot at school on his own, and I want to keep showing others how to integrate this into most aspects of his day. My dad keeps a running video log when he sees us working, Adam’s Speech Language Therapist (SLP) keeps photographing us at work. I keep thinking I’ve got to put this together so that other people can also see it – and show how when Adam just begins typing a sentence, he can then get it out verbally just by typing the first letter. I’ll pull out my single-mom card now – my plate is so full and I’ve got so many projects on the go; this is one of them. Focussed, goal-oriented typing seems to have had an effect on his ability to focus and planning to say the sentence, and this is becoming like his own “prompt.”

I’ve just finished a long lit review for my thesis on Wretches & Jabberers and I’m reviewing a few articles for the Canadian Journal of Disability Studies. I hope to spend more time coalescing the past few years on the topic of language, affect and typing and how I’ve played a part in Adam’s as well as how his autism school has cooperated when this method is not specifically integrated into their program.

The Party

Filed Under (Acceptance, Adam) by Estee on 22-04-2013

Adam had his 11th birthday party this past weekend. He has grown so much the past year, like a bamboo shoot – thin and taller. I always throw a party for Adam…it is our normal, perhaps your “quirk-fest.” No matter, it’s our world; somehow we make a space for ourselves.

This year, I booked his favorite place where he learns trampoline. He is getting quite good at it (with a dedicated coach). I thought he’d like to show off his new skills, and indeed he did. Every year as well, I invite autistic children with one or two typical children. There’s always someone new we get to meet – school never seems to be a stable place over the years so we end up meeting new people all the time.

One year, I had a company bring in snakes and animals – the kids loved to be able to touch them and watch them move. Another year I did an art party. This year, a place where children could partake in circus arts. And every year, I will always hear from a parent that this is their autistic child’s first birthday party – that their “typical” children will get invitations all the time, but not the autistic kids. I suppose this makes me feel more resolute to keep having “autistic parties” – in fact, I prefer autistic children. I find them easier to get along with and grateful, even if this is not demonstrated with verbose thank yous. I love inviting children to play in the yard and I’ve become quite familiar with “difference” that I don’t expect children to behave in a particular way. One can feel contentment.

It’s as if we are living on an island and people come to visit, but never enough. Adam loves when I invited my friends over. Most days he’ll play and giggle and then he has the option of taking his own time outs when he needs them. I think a lot, however, of how we can’t get through a day without having to explain ourselves out there “in the world,” without being evaluated and observed, but this doesn’t happen with our friends. Friendship is when you don’t have to explain any more. I try to imagine how autistic people and others with intellectual disabilities feel with having to try to explain themselves, or try to be understood, day in and day out. As a typical person, this is hard enough.

I got an email this morning from one of the mom’s. She said that her guy smiled all the way home after the party. That’s all I want, and I imagine, all that Adam wants too – an opportunity to show off, be able to do something well, and most of all, to be invited to the party. We all want to be happy that we made the effort, and ultimately accepted without question.

Acceptance Is Action

Filed Under (Acceptance, Activism, Law) by Estee on 16-04-2013

Here are a few videos promoted by The Autistic Self Advoacy Network for Autism Acceptance Month with Amy Sequenza, Henry Frost and Kevin Barrett:

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And here, an interview Keep Hearing Voices with autistic self-advocate, Bev Harp.

Also of value to listen/watch are two legal/policy symposiums if you haven’t already seen these:

On Certainty ~ A quote

Filed Under (Science) by Estee on 12-04-2013

“It is clear that our empirical propositions do not all have the same status, since one can lay down such a proposition and turn it from an empirical proposition into a norm of description. Think of chemical investigations. Lavoisier makes experiments with substances in his laboratory and now he concludes that this and that takes place when there is burning. He does not say that it might happen otherwise another time. He has got hold of a definite world-picture – not of course one that he invented; he learned it as a child. I say world-picture and not hypothesis, because it is the matter-of-course foundation for his research and as such also goes unmentioned.” (176, Wittgenstein, On Certainty).

I recommend this little book to question notions of “truth,” “fact,” and how we impute the meaning of autism inside the body. While certain physical properties may be observed, the meaning of them is fabricated by us.

A Rehabilitation Proposal for Non-Autistic Canadian Citizens

Filed Under (Activism) by Estee on 11-04-2013

I highly recommend Alicia A. Broderick’s article Autism As Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavoiral Analysis in Disability Studies Quarterly by clicking here. In it, she describes the false premise of autism “recovery” of ABA therapy and the masters of “recovery” constructions, Ivar Lovaas, and Catherine Maurice. She also addresses the neo-liberal construct of corporate “charity” with careful analysis of Autism Speaks. A quote:

“One may argue that rhetoric is at its most powerful when it functions most successfully ideologically – that is, when the systems of ideas that it draws upon and represents are so naturalized and appear to be so commonsensical that one may fail to even notice what it obscures and precludes. Wilson and Lewiecki-Wilson (2001) argue that language and rhetoric play a performative function, ‘calling this naturalized meaning of disability into circulation,’ and in so doing, ‘actually restrict[ing] thinking about disability in any other way.” (2011)

I’d like to suggest a new Senate Committee Report to update the Pay Now Pay Later: Autism Families in Crisis which was drafted in 2007 after Auton to consider an additional prong, of “autism service” that would address the “crisis” that Canadians now face. That is, I propose a report to rehabilitate all non-autistic Canadians via an urgently needed national strategy as outlined in a Rehabilitation of Canadian Attitudes Towards Autistic Citizens report. This strategy would aim to accept autism as part of the Canadian mosaic and to recognize the substantive equality of autistic individuals. This would include, but not be limited to, education, inclusion, all services that assist autistic Canadians, as well as access to services and entitlements that are available to all Canadian citizens. Further, this report could suggest methods for committees that have “invited” autistic people to “stakeholder meetings” so as not to assume that all autistic people can communicate or participate on the same terms and time limits, and with complete independence (i.e.;without support staff or facilitators). This committee could recognize the value of autistic Canadian citizens in an effort to accommodate and make available the means by which verbal and non-verbal citizens can suggest, for themselves, the types of supports they may require to participate in their communities. Also, the report’s committees would consist of autistic individuals – the highly verbal to the non-verbal – and be a model for participatory methods.

The rehabilitation service component could involve 40 hours of intensive therapy per week to modify the behaviour of non-autistic Canadians currently engaged with autism charity, and the like. These individuals are often “trapped” inside the body of the rhetoric of science (a highly subjective field costumed as “objective” by lexical construction) and could be cured. This would recover all non-autistic Canadian citizens from subjectivity and discrimination – to name the core symptoms of this disease. This should be the treatment of choice to ameliorate the prejudice towards, and the exclusion of, autistic citizens which would thereby create a more united and inclusive Canada that accepts that autistic people are both different and equal. I strongly suggest that the Canadian government provide funding for this therapy as a “non-core medical service” to be funded under Medicare to help relieve the burden and costs of prejudice that eventually all Canadians will have to bear.

In Support of Autistic People

Filed Under (Acceptance, Autistic Self Advocacy, Communication, Law) by Estee on 09-04-2013

Here is one video I want to share in support of autistic people with Larry Bissonnette and Tracy Thresher. If you haven’t yet watched Wretches and Jabberers, you can access the entire movie on YouTube.

Here they are at a panel at Chapman University. As for my son, he is asked to type independently by his teachers for work. At home, I support him to communicate more complicated conversation. Some days he is fully independent and other days he isn’t. I believe that provided supported communication is a substantive right as it is for the Deaf community to have interpreters to interact in society. I view this only as a way to view how autistic people are not granted the right to supported communication or many forms of assistance or devices as a right because the ABA lobby in Canada takes the attention away from these rights.

(Also note: such a comparator group was not used in Auton v. B.C. because autism was cited only as a medical condition that should receive remediation under Medicare…which is very problematic on many levels for substantive equality, and which deserves more attention than I’m writing in this post. The Auton case is an example of adverse effect discrimination, that is, not recognizing the right to be different, but instead, simply put, that autistic people need to be remediated or normalized before having the right to be included and/or educated and/or to participate in society. The case is so problematic that I encourage people to read Michelle Dawson’s factum. I also drew attention to this in Moore v. British Columbia, 2012 where this adverse effect was acknowledged in the factum. I have also written a series of papers on the law which may be added to this website at a later date).

My son’s speech (the oh so important goal of most people for better or worse, and often to the detriment of some autistics) happens to become more fluent as he is supported. He’ll begin to type a sentence, and then more able to complete what he’s started by speech. This shows that it acts, for him anyway, very much as a prompt. An important one.

Enjoy watching this in support of autistic people:

Some ways to incorporate “autism acceptance”

Filed Under (Acceptance, Activism) by Estee on 08-04-2013

To follow yesterdays post, I want to continue with some ways to incorporate “autism acceptance” into our communities while also resisting appropriation and totalizing effects. In other words, how do we keep the concept of acceptance open and as a human rights and substantive equality issue and to guard against the omission of others? As humanists, how can we work to include people at the proverbial table? Who is missing from it?

As Simon and Masschelein state in Shelley Tremain (2009), “what the discourse on inclusion takes for granted – namely, that human beings become individuals by belonging to a totality – is part of a governmental history and, furthermore, exemplifies the double-bond of individualization and totalization” (225). In the vein of bell hooks and others, “…disabled [people] may need some encouragement to explore the possible ways of being active subjects with options for transgression. Practices of transgression, in the context of inclusion, differ from a more antagonistic form of frontational styles of resistance; they represent a more agnostic form of struggle against those who attempt to exclude. Transgression could, on the one hand, be seen as representing a restricted level of engagement for disabled people; on the other hand, however, transgression could signal opportunities for practical involvement in battles that can be won….[this kind of exploration] may encourage disabled [people] to ‘escape grasps of categories.” (Simon & Masschelein, and Foucault in Tremain, 202).

At the York University Critical Disability Studies conference last weekend, as well as in other conversations, I usually will come across conversations within and from without the autistic community on how we could possibly include “lower” functioning and non-verbal autistic individuals. Usually the conversation peeters as people consider the systems and frameworks that are currently constructed, and how autistic people can function within them. This should illustrate the issue from the get-go – that the systems that are constructed are exclusive to many. Some of our more verbal members of the autistic community are permitted to participate because of the ability to acquire the “appropriate” skills, even if they are like exhausting performances for many. It could be considered as necessary to penetrate what was once even more impenetrable, but it doesn’t completely resolve our problem as a community. There are also folks doing participatory research in the field, yet often time and money constraints from research funding bodies don’t make space and time that is needed for the involvement of non-verbal individuals who need to take their time. These are considered, by normates in particular, as the least valuable members of our community because they are slow in a society that values speed, and this of course is conflated with efficiency.

The notion of finding ways to enable transgression is a possible way forward. In sitting on boards with “behavioural” (I’m using scare quotes for a reason, folks), and people who do not communicate typically, I can at least offer one observation that may contribute to this notion of acceptance – patience and consideration. For example, it is not great in a meeting if we say, okay that person’s formulating a comment or response so while we’re doing that let’s just move on with X. Rather, let there be silence so that others can have their say, in whatever manner they may say it! Let there be at least the time and the respect for people who need pictorial notes, who need time to use their devices, whose bodies require more space or close proximity or to jump up and down. My friends, could we all consider enabling other transgressive acts for freedom? These are the thoughts I wake up with every day as I enjoy interacting with my son.

I’d like to also add some great ideas from others for integrating acceptance into this month, and I hope every month such as this site from Autistic Self Advocacy Network and The Autism Acceptance Day/Month site and blog and The Autism Acceptance Project. It’s great to see folks working so hard for this. I guess I just don’t think “awareness” or acceptance should happen during solely during the month of April. To me that’s like being nice to a person one day a year on their birthday. I can’t even limit to a decade. The humanitarian movement should happen every day, and our need to promote acceptance speaks volumes about how people are feeling, treated and regarded in society.

Resource:
Shelley Tremain, (2009), Foucault and the Government of Disability, The University of Michigan Press.

Thoughts on “Blue” Campaigns for Autism “Awareness” Month

Filed Under (Acceptance, Activism) by Estee on 07-04-2013

April 2nd makes me quiet. So many voices, so many people who need to “speak” on behalf of many autistic people – I don’t think that this needs another voice… well, just not on April 2nd “Light it Up Blue” Campaign generated by Autism Speaks. Let me begin by a poignant finding by Paula C. Durbin-Westby in her article: Public Law 109-416 Is Not Just About Scientific Research: Speaking Truth to Power At Interagency Autism Coordinating Committee Meetings (Disability Studies Quarterly). As she sits as one autistic person on the committee to advise the Combating Autism Act agenda, she highlights that,

“in 2008, less than 1%, about $1.6 million of the $127 million total NIMH budget was allocated for services and supports reserach. This one percent, recommended by those who are considered high-level experts on autism, was supposed to cover the following: service delivery, community inclusion issues, transition issues, education, housing, transportation, health care access, and other service related research. By contrast, in 2009, $75 million was allocated to a single cure-related research initiative. The initiative funded? [that is, service initiatives]…”

It is more than clear, it screams, actually (not speaks) that funding priority is given to eradicated autism. Awareness campaigns are not devoted to understanding autism for the acceptance and for services that enable us to live peaceful lives within society. This is why sometimes it’s just not that inspiring for me to write blog posts during the month of April. It is also concerning that we are compelled to react to the Light It Up Blue and other campaigns that have denigrated and devalued autistic lives. As I write “autistic lives,” even, I sit uncomfortably, for it is a definition that tends to essentialize and determine a set of characteristics that are supposed to belong to all autistic individuals. This is difficult for people whose lives are indeed at stake – there is a need to demonstrate that lives have value, and pride movements arise from these need. However, it is important to remember that neuroscience is not at all empirical or objective. It is rooted in philosophy (theroy of mind theory and the like). When I see neuroscience portending to find the eitology of autism, I imagine giving Kant an fMRI machine. I’m not claiming that there is anything necessarily wrong with this curiousity, as long as we acknowledge that it is an human inclination to keep digging inside the body to find what makes us human…autistic people happen to be the targets. Notice how the rates of autism diagnosis always happen to increase right before Autism Awareness Month? The neo-liberal machine is hard a work. The autistic body, experiences “used” by science and then shaped by external “obeservation” – which is in and of itself shaped by a label and a framework named autism) – becomes objectified.

The question about Autism Acceptance Month, a response by people with the autism label to “Autism Awareness Month,” has unique opportunities to not only raise these issues, but to remain flexible. Humans are never fixed. Our knowledge and imaginings constantly transform over time and contexts. Autism is not a new invention and arguably, claimed Inge Mans, mental retardation didn’t exist in the nineteenth century – curious since this was the great age of Confinement for people labeled idiots and the “feeble-minded.” (I recommend C.F. Goodey’s, The History of Intellectual Disability).The language may change (as much as the ever-changing diagnosis’ as in our upcoming DSM V), but it seems that humanity doesn’t. There have always been disabled people and there always will be. The point to is to stay open to the possibilities and if we are going to promote awareness; this awareness of a history of disability, institutionalization, and abuse (of particular concern since ECT (Electric Shock Therapy) is on the rise in Canada and the U.S. for mentally “ill” people and people with autism, notes scholar, A.J. Withers).

There is a need for political action and reaction as well as this campaign for greater awareness and acceptance for what is happening to autistic people in society and why. The funding allocations loudly speak, or express, what Obama might call, “good folks doing not so good things.” (That’s not verbatim…but something like that). A critical inquiry into why we do and how we do it must always be pursued – how can the Autism Acceptance Movement create learning opportunities for folks who do not yet understand the complexities of disability? The medical profession is crossing borders with critical disability inquiry, but we need more. It does not yet understand disability.

The charity-model, using cure campaigns and illness metaphors, misses so many points and needs of many autistic people and families to live peacefully, and equally, in society as autistic people. Many more folks require assistance, services, right to education (which is not yet a given despite legislation), and different kinds of supports – how on earth is a paltry sum going to cut it, unless we are implying that the majority of funds for cure research is intended to cut out autism from society?

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.