Decolonizing “Autism Acceptance”

Filed Under (Acceptance) by Estee on 11-02-2013

It is interesting to see how many versions of “autism acceptance” there are out there. In my classes, filled with people with various disabilities including autism, autistic people say that they want to be accepted. This generally means that people with the autism label want equality of opportunity and equality of well-being (Rioux, 1999), the latter noting that not all individuals are able to live fully indepedent lives, and that the level of their disability should not take away these rights. Here is how The Autism Acceptance Project was acknowledged in a letter to the United Nations for being but one of the organizations important in the history of autism acceptance:

Paula C. Durbin-Westby, who wanted a corrective to the negative images of autism that have been prevalent in many autism “awareness” media pieces and events during April, organized the first Autism Acceptance Day celebration on April 1, 2011. She wrote that it was pro-neurodiversity, pro-supports and services, against “cures” and not about fundraising or other agendas. Autism Acceptance Day and Autism Acceptance Month quickly became popular in the Autistic community as participants spread the word through Facebook and other media.

A growing number of organizations and disability rights advocates now participate in Autism Acceptance Day and Autism Acceptance Month observances, which highlight both social acceptance of Autistic people and the need for appropriate supports to enable full participation in the community. Autistic advocates have taken the lead in bringing about this much-needed cultural shift by working for systems change and by sharing our stories and perspectives, not only during the April events but also throughout the year.

The acceptance movement was built by autistic individuals who have done the activist work in struggling for understanding of an autistic-point-of-view. This has been lacking in recent years. I will argue, however, that charity, parent and scientific “voices” are the predominant ones leading the autism discussion and appropriating the term “autism acceptance.” There is also lots written on the philosophy and semiotics of science which demonstrates how our language creates issues and problems, and these are important areas for critical disability research in the field of autism. I think while everyone wants to be accepted, we have to consider decolonizing the notion.

The one area of on-going concern is the triviality with which people marry any movement with their own “do-good” intentions. We are guided by a current economic framework which encourages colonization of people for profit (this can come in many forms). I’m very concerned how young people are encouraged to do charitable work today. I’m not saying here that there’s not work to be done. Yet walking into a university hall, watching young people have a good time in the name of raising money for a cause they have probably not reserached well should be something that we as a society should think about. What about travel charity where students are encouraged to fly in and out of emerging world countries for a week? It’s a complicated matter and these issues have been taken on by others more aware than I am by third-world issues. What we lack is a critical questioning of charity and “acceptance,” particularly when we go forward and create our own definitions of it. Perhaps because or world is growing smaller and denser by the day, we need serious discussions about how we “help.”

To return to the autism community, for instance, an acceptance campaign movement that focusses on parents as “sufferers” and the “most important” people to talk to in addition to medical professionals, perpetuates the very oppressive, dominant voices that autistic people work so hard to be heard over. I don’t think there are “versions” of acceptance out there. There are critical, life-threatening discussions revolving around The Genome Project and who gets the right to decide and just who is important? Who gets to live? The issues extend far beyond the simple act of doing good when, in fact, we might be doing harm. I don’t think those of us who are not autistic have the right to really say what acceptance is exactly — what it means for the community living with the autism label. To add to the matter, the opinions within that community of autistic people are also varied and need to be sorted out. As parents and professionals our role is to engage with these discussions, but by thinking critically and muting our volume. It’s not that parents do not need support. TAAP used to run parent support groups lead by autstic people. I would encourage other organizations and schools to hire autistic people to do this work. The volume of dominant non-autistic voices leading the movements and charities has been of issue for a long time and we need to understand that we tend to operate under normative perspectives. For me personally, I wake up every day asking myself these questions of how I might be harming when I’m trying to enable and they literally make my stomach clench, and I’m not trying to be self-righteous when I say that. Ah, the perilous business of words.

I was thinking of two books this morning regarding these challenges. First, in thinking of the theme of colonization, I extended the notion to colonizing acceptance, which means to say that people are taking the term and skewing it, possibly, to fit their own normative needs and definitions. I was also thinking of organization as a methodology, if you will, and of Linda Tuhiwai Smith’s Decolonizing Methodologies.

“The research agenda is conceptualized here as constituting a programme and set of approaches that are situated within the decolonization of politics of the indigenous peoples’ movement. The agenda focused strategically on the goal of self-determination of indigenous peoples. Self-determination in a research agenda becomes something more than a political goal. It becomes the goal of social justice which is expressed through and across a wide range of psychological, social, cultural and economic terrains. It necessarily involves the process of transformation, of decolonization, of healing and of mobilization as peoples…indigenous peoples are deeply cynical about the capacity, motives or methodologies of Western research to deliver any benefits to indigenous peoples whom science has long regarded, indeed has classified as being ‘not human.'” (pp.116-118).

Smith’s book is used by disability scholars to consider how this translates to the colonization of movements, research and charities which claim to work “on behalf of” people with autism in the name of normalizing them, not always for the sake of helping them in their own expressed ways of asking to be enabled and supported in society, or even medically assisted. For parents and all reserachers and supporters, this is an excellent read in terms of how we can enable emancipatory practice as facilitators, not as leaders or experts. This is a must read by all people working in the autism field.

I’ve also attached a few links here for those of you interested in the problems with charity and disabiltiy rights: There are many papers and scholarly work done on the perils of the charity model and disability. Here’s but one I found quickly on the Internet. Here’s one from Disabilityplanet.co.uk I would like to extend my future research to discuss the issues of organization within our current economic system, and the challenges we face.

Finally, Lisa Cartwright came to mind and her book Moral Spectatorship. This book is an important read for organizers, allies and supporters to consider our hands in the arena of autism and respresentation, particularly if we build websites, ad campaigns, autism campaigns and reserach labs. This speaks to the need for interdependence and facilitated support and decision making, and how carefully we must tread. I have a much longer reading list, but let’s start here. I find her book important to discuss relational ethics in this field. Here’s a little bit from the introduction to lead you in:

“At the basis of this entire book is a concept of intersubjectivity that Levinas develops, in which the copresence of two hands, belonging to the same body, is extended to the other person. This idea of intersubjectivity as the other person and I as ‘elements of incorporeity’ and as a ‘borrowing of myself from the other’ (Levinas, 1993, 100 alluding to Merleau-Ponty) is demonstrated over and over in Moral Spectatorship as a relationship into which always enters the problematic of ‘hands’ that cannot always reach, feel, and express in ways that are intended and desired by either I or the other. The ‘intropathy of intellectual communication’ theorized by both philosophers is idealized on the basis of a whole body that has the capacity to reach, to touch, to feel in normative ways. This model continually fails in the face of what we might call sensory deficits, or emotional deficits – or, rather, differences in the organization of sensory and emotional pathways within and between subjects…As I will show throughout this book, to borrow oneself from an other in order to have voice in the world has been regarded with suspicion, has been pathologized, because it proposes a model a subjectivity that flies in the face of the liberal autonomous subject. Dependency and nonisomorphic relationships of power are anathema to notions of the autonomous individual.”

Further, “Voice is a central concept throughout this book that is linked to this coproduction of an ‘I.’ The term “voice” has a wide range and mix of meanings. The most important one for this work is the political use of the word “voice” as a figure of speech connoting agency and power…’Coming to voice’ is a figure of speech in a range of political movements connoting the achievement of agency, usually belatedly or through political struggle before which the individual or collective subject who speaks is understood to have been ‘silent’ or ‘invisible’…when Kohut (1984,82) described empathy as a kind of ‘vicarious introspection’ in which one thinks and feels oneself into the inner life of another person, he was referring to the psychoanalyst’s necessary relationship to a client in the process of a cure. This is a fundamentally moral relationship. It is this type of caregiving that structures the relationships of identification and spectatorship discussed…”(introduction).

The idea expressed here is that our engagement/relationship in the name of helping or curing is asymmetrical, not equal. We take the normative stance and decide, semiotically, morally and even legally, what is abnormal and needs our remedy. I feel a great responsibility when I consider Cartwright’s premise. I feel responsible as Adam’s parent to enable him by my quiet facilitation and patience, which is not often accepted in this world that sees capacity and competence in terms of independence, or that is impatient for quick words and answers. It is our interdependence that offers arrays of possibility, if autistic “voice” and “agency” is respected and not forced to normalcy when it cannot be forced. In terms of “autism acceptance” being appropriated these days where it’s meaning seems to be erased or essentialized, we have to consider the normative paradigms and the motives behind our design, knowingly or unknowingly. As I write here, with words of course, as a parent and organizer, we have to put ourselves under the lens, not autistic people. We are still at this stage.

Hermes

Filed Under (Acceptance, The Autism Acceptance Project) by Estee on 10-02-2013

“Hermes has taken over the world, our technical world exists only through the all-encompassing confusion of hubbub, you will not find anything left on the earth – stone, furrow or small insect – that is not covered by the diluvian din of hullabaloo.” (From Michael Serres, The Five Senses: A Philosophy of Mingled Bodies p.10.).

This is a thought I had about internet and identity today. I appreciate that members brought the iteration of the other project to our attention. The work of TAAProject stands on its own. TAAProject will continue with its important work and support others in the name of helping autistic people to contribute to society as autistic people. If you wish to sign up for our newsletter, and are not already on our mailing list, please got to our website and sign up there.

This is the REAL Autism Acceptance Project: Our Video & CBC News – The National – In Depth & Analysis – Positively Autistic

Filed Under (The Autism Acceptance Project) by Estee on 09-02-2013

CBC News – The National – In Depth & Analysis – Positively Autistic.

And Here is the TAAP promotional video created in 2006:

Will the real Autism Acceptance Project please stand up?

Filed Under (Activism) by Estee on 07-02-2013

Today, I was informed that the name of the organization founded by myself but built with many autistic people, both verbal and non verbal, was taken by the creator at this site here. Ms. Zalzal, the creator of this pretty site is a web designer and built it as part of her senior exhibition project for Troy University’s Design Technology Innovation Program. This site was created in October 2012. The only problem is, the name belongs to the original Autism Acceptance Project, founded in 2005.

After trying a few portals to contact the creator, Ms. Jennifer Zalzal, I heard from her this evening. Honestly, many of us were not happy with her site. At the moment I cannot link you to the home page, which I have printed and screen-shotted (it’s no longer on her site), which reads:

“Through my research I have come across a similar campaign with the same name as the one I am branding/promoting. The Autism Acceptance Project (TAAP). Their mission statement works to promote acceptance of and accommodations for autistic people in society. The Autism Acceptance Project will bring forth a different and positive view about autism to the public in order to create tolerance and acceptance in teh community and to empower parents and autistic people.”

She then goes on to say,

“I think this is a wonderful statement and cause, but I would like to specify how my campaign differs to confirm my motive. My acceptance campaign is devoted to promote the acceptance and accommodations for people and parents suffering with the spectrum, similar in some ways to TAAP. The research and information I provide on my website is fully based on personal interviews with medical professionals and most importantly parents of autistic children. I want to give the viewers of my site a look at autism from behind closed doors and through the voices of those who know them best….I want to educate people on the truth of the matter.”

Today in an email from Ms. Zalzal to me, she stated that when she did her research she “did not come across your site.” I have been in email correspondence and am trying to explain to Ms. Zalzal why this is so problematic, and in the meantime, hope to support her in her efforts to accept autism…that is, before I realized this discrepancy. Her site is ableist in nature, so we find it difficult to support her premise. Let her do so on her own platform and identity, not ours!

As a critical disability scholar, I have to also be critical of our own agenda. When we wrote “positive” views about autism, this was in 2005. No one was saying anything positive about autism at the time and autistic adults had started something called The Autistic Adult Picture Project in order to project the image of real autistic people and living in society. Jim Sinclair, Frank Klein, and so many others wrote seminal pieces towards autistic equality and inclusion. Dr. Dinah Murray, autistic herself, created a video You Tube Channel called PosAutive which accepted submissions from autistic people of positive contributions in order to upstage the miserable portrayals of autistic people that were rampant in parent autism campaigns as well as by autism societies and Autism Speaks. Let me be clear as well that although I’m a non autistic parent who founded TAAP, I took a lot of critiques myself from autistic folks when I had the idea to start it. Critique is essential. It helps us to learn and grow. My commitment towards my son’s inclusion and acceptance in society reminds me everyday to look deeply at issues and my own internal bias’. I think it’s also important to send this reminder that many people were working assiduously (and still do today) to counter the portrayals that were, and are, seen by autistic people as oppressive and a threat to substantive equality or equality of opportunity and well-being. These ends are not served when we speak of parent’s suffering, which then leads to the discourse of burden. These movements in the early 2000’s, along with other disability rights activism, was an important shift to the view about autism acceptance, and in a minute, you’ll see how Ms. Zalzal threatens to undercut it. And this folks, is how “innocently” discrimination is materialized. Surely every experience is complex, and critical disability discourse enables this conversation, but let me reiterate that positive portrayals at the time were a necessary counter-speak to the misery-speak so predominant at the time. A few years later, many more people speak to inclusion and acceptance, although we haven’t yet attained it as a legal right in society.

I’ve also critiqued the way notions of acceptance are interpreted, and as we see on Ms. Zalzal’s version, it’s not quite acceptance when the “truth” as she puts it, comes from “parents and medical professionals.” Truth is a really sticky thing. Hang a sticky strip of truth and you’ll catch a lot of flies and they’ll just die. What is truth? Whose truth? It’s not a static concept! The other fundamental problem with her presentation of “autism acceptance” is that it excludes autistic people. Apparently, according Ms. Zalzal’s preamble, parent-truth is more important truth, and autistic truth is not necessarily that important. In a world that has worked so hard for disability rights and inclusion through various Human Rights Acts and international policy instruments, excluding autistic “voices,” is a violation of these fundamental rights. But hey, people trample on them all the time, right? Does it make it right to know something exists and pretend it’s not there?

When something very problematic comes up, it’s important for us to talk about it. I’ve asked her to please change her brand and return the TAAP identity to us as so many autistic people worked on this not to mention the years it took! Ironically, taking identity so easily is a fitting metaphor to autistic people having their identity taken from them by people who are not autistic. This to me speaks volumes about her other site/campaign.

Also, last year our website www.taaproject.com was hacked (not in connection to this) so this was another blow to hear that someone just saw our name and said “hey I’m just going to take it and make my own campaign because I think I can do this all by myself.” Advocates who can endure the criticism of their good intentions have the potential to be better advocates. Many people have ideas and they think they can run their own campaigns. When they press up against resistance from the community they claim to represent, it’s really important for them to listen. As one of my profs said to the class, “take it in the chin!” The problem is, Ms. Zalzal’s campaign rests on nothing save for her own ideas. Excluding voices does not make for a campaign. If people wish to join campaigns or make them, there are some fundmental rules:

1. Don’t take other people’s intellectual property and admit your’e doing it on your homepage and then write an email claiming you didn’t see us in your research;
2. Get involved with the community you are claiming acceptance for. Don’t speak on their behalf;
3. Recognize the problems of representing the medical model and parent model in a movement that has struggled with years of oppression by these very models.

From a critical disability standpoint, although I do believe all voices are important, Ms. Zalzal’s campaign is heavily weighted on hearing from the parents who “suffer” and hearing from medical professionals (in the name of “truth” about autism) who we need of course, but whose history with disabled people are complicated and paternalistic. Please see my blog post yesterday. I care about parents. I really care about autistic people as I have a wonderful autistic son in my life. I live with the complexities every day and I have chosen to live with them carefully and reflexively. I have not chosen the easy path. And believe me, I’ve taken it in the chin, and I’m quite certain I’ll have to again. I still support Ms. Zalzal in her growing process and to join the larger autism acceptance movement through various organizations and rights activists. I hope we can all encourage it.

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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.