The Co-Production of Autism in the film Wretches and Jabberers

Filed Under (autism, Autism History, Communication, Critical Disability Studies, Critical Disability Theory, Film, Language) by Estee on 30-09-2013

Well, I finally posted my Master’s Research Paper that I completed in August and defended in September. You can read it here. Much more work will be going into this as I now pursue my PhD in Critical Disability Studies. I have to say, that a 65-page limit on this topic was extremely challenging. I look forward, as well, to presenting on October 12th in Denver at the Autism National Committee (AutCOM) conference.

Reflections on the Acceptance of Disability in Society

Filed Under (Acceptance, Autism History, Autistic Self Advocacy, Critical Disability Studies, Disability History, DSM V, Ethics, Inclusion, Research) by Estee on 06-10-2012

Is there a place for the disabled in society?

The purpose of the title is from historical readings that the disabled in history were displaced and living on the margins of society. Who were considered/are considered valued members of society? Socities have been obsessed with placing the disabled into a variety of contexts that justifies human existence, or fears (demons, monsters, mad, deviants) making the normal the privileged members. Without a comparative measure, as it were, what would we humans deem ourselves to be?

I have a series of questions that I’ll be considering (probably for a lifetime). Feel free to try and contribute thoughts in the comment box.

Pro/claiming Autistic Identity:

Is claiming biological identify leading to another possible eugenics movement? Is there a danger to biological self-identification? How important are self-identification and self-advocacy and pride-movements?

Are pride movements perpetuating the dis/abled dichotomies that already oppress? Do you think they have a positive purpose? Should there be a point at which we stop advancing pride movements, in other words, move beyond them? When is a good time to do so?

How important is the label autism to accommodation if autism is a social construct? (It is). Where “special” and enforcing “inclusion” have already proved challenging, maybe even impossible thus far, is it so because we continue to place the disabled out of the confines of the norm. In other words, are we continuing to perpetuate a false dichotomy that does little to value and serve, but more to segregate and isolate? By wanting inclusion, we are saying we are excluded? Does this stance further the goal itself, or not any longer?

Who Gets To Produce Knowledge About Autism?

The DSMV, behavioural analysis and observation, and the categorization of people.

Who gets to diagnose whom? Who gets to produce knowledge and categories about autism? In the past, and to a large extent today, it is non-autistic or “normal” people and we now witness a gradual inclusion of disabled “voices” to this mix. Do disabled individuals appropriate notions of impairment and abnormality enforced by long-held categories made originally by people who have not had disabilities? After all, autistic people are still largely tokenized minorities among autism charities, autism committees, and as participants in autism research studies.

Accommodation and Acceptance:

To what extent is the citing of needs/impairments an important part (or not) of acknowledging that we are all part of the abled-disabled continuum, which herein, I have already parsed?

Do you think the term autism and/or disability will exist one hundred years from now? Or are we a society that simply wears the same dress, just in different colours?

Have we learned anything from autistic self-advocates that assist us to simply accept autistic individuals and value the right of all people to exist, be educated, and be valued, no matter what level of disability, in society?

Utopias and ideals have perpetuated individual and societal notions about what we should be – what we are versus what we aspire to be. To what extent may this continue to be a driving force (as in survivial of the fittest) under an capitalist/economic lens, and where are we now with this “force” in viewing the disabled as part of this? As disability has always been a part of human existence, despite eugenics movement’s attempts at normalizing society and eradicating “deviant” people from the norms, how far have we come to accepting, embracing and valuing human difference? After all, while the eugenicists caused great harm to many people, and have continued to do so as a legacy, they didn’t succeed in eradicating human difference.*

Reference:

*In reference to the eugenics movement from Davis, “Constructing Normalcy” in Enforcing Normalcy: Disability Deafness and the Body, pp. 23-49, 1995:

“The conflation of disability with depravity itself expressed itself in the formulation ‘defective class.’ As the president of the University of Wisconsin declared after World War One, ‘we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation.’ At it must be reiterated that the eugenics movement was not stocked with eccentrics…Rockefeller, Churchill, Roosevelt, H.G. Wells, John Maynard Keynes”…among a longer list. Some food for thought when thinking about such questions.

The Importance Of Collecting And Preserving Autism History

Filed Under (Activism, Autism History) by Estee on 17-09-2012

Introduction:

You can’t find a history of autism, or the term, prior to 1911 when Eugen Bleuler defined autism as a detachment from reality in terms of understanding schizophrenia. Try reaching for an autism history into the 19th century and beyond, and you won’t find it, necessarily. Historians of autism, and there are few, draw upon historical figures that possess our modern understanding of autistic traits as presented in the DSM IV. Some of these historians include Uta Frith, Mitzi Waltz, Harlan Lane and Michael Fitzgerald. Waltz’s book Autism: A Social and Medical History, is about to be released. It has been said that the practice of identifying autistic people in history is a bit like diagnosing the dead. Skepticism around the practice, perhaps assisted by current autism hype and politics, I would argue, might deter some historians from venturing into it.

In this post, I will cite the work of disability historian Geoffrey Reaume and his call for more research into the history of disability, and the proper saving of it amidst the tenuous nature of information located on the Internet. I will point out how autism history is relatively modern, how it can be in jeopardy by virtue of the “movement” for rights and recognition occuring online. To this latter point, I will mention The Autism Acceptance Project (TAAP) and its event The Joy of Autism: Redefining Ability and Quality of Life (2007) to illustrate how I, as its organizer and curator working with autistic board members and an autistic advisory committee, attempted to capture a recent autism history/movement by illustrating a few of the steps of assembly and dissemination as an historical exercise in itself. I attempt to illustrate potential issues and pitfalls in archiving a modern autism history. From reading Reaume, documenting thoughts, method and people is an important part of documenting history. This is already a long blog post and the topic deserves more attention than this format can provide. Finally, I will suggest that autism is still largely absent in the wider disability discourse, which might be more widely accepted if more research is done into the history of autism.

Collecting Autism History — Choices and Cautions:

The history of autism does not need to be limited to autistic people. As Geoffrey Reaume points out in his paper, Disability History in Canada: Present Work In the Field and Future Prospects, we need more research into the history of all disabilities including sensory disabilities, intellectual disabilities, physical disabilities, disability and eugenics, disability history as it intersects with race and immigration (and gender I would add), mad-people’s history, and activist histories. He does not, however, cite autism history, specifically. As I mentioned, because autism is a very recent diagnosis (1993), oral histories and autistic memoir have coincided with a recent disability rights movement of the 1960’s. These have contributed to a rapidly burgeoning Autism Rights Movement. We understand autism, therefore, in very modern terms and autism is still largely missing among a more vast body of disability history.

“In order to have a fuller sense of history, including where disabled people lead lives that are as mundane and full of contradictions as that of most people who are not disabled, a wide variety of sources need to be preserved and a wide variety of histories need to be told.” Reaume cautions us that the bulk of modern history, as it were, is locked up in our computers. One day, he argues, those computers will break down. The internet will dump our information; our emails are not printed on paper to be saved. Such correspondences have contributed to our understanding of how the disabled were treated and regarded by the medical profession. They also have illuminated the private lives and struggles of the disabled, as two examples.

This brings me to the thought of how much of our autism history, and the history of the Autism Rights Movement exploded online. Due to the very nature of computing and ease of use to communicate in this format for many autistic people, we also run the risk of losing it. It was one of the reasons I curated the exhibition during the event The Joy of Autism: Redefining Ability and Quality of Life in 2007. This comprised a series of events, lectures and visual exhibits.

Organizing TAAP and The Events:

As curator, (note, a non-autistic person) I attempted to capture the YouTube videos, the blogs by autistic people and autistic allies, the political debates and the resistance of autistic people to others ascribing an identity to them that was based in fascination and fear. Accounts had been recorded online as personal stories about behavioural treatment, schools, and institutionalization, parent abuse, infanticide, as well as statements about autistic perspective and personal strengths went unrecognized by the medical research community and the media. These usually took an online blog-form, although autistic people began socializing in online chat rooms and social games before then. Much of this was aimed at refuting popular mythologies that were proliferating about autism and people with autism as unaware and “not even in the room,” to describe a vacuous, unintelligent nature of autistic people.

We (interested volunteers and autistic people) exhibited important new websites and their content in a more traditional gallery-exhibition format. The exhibit was mixed with video, artwork, published work executed by autistic people on large signage, some printed on fibre glass as floating; thoughts, by autistic people, about how they had been treated and regarded. Different aspects were located in different gallery rooms at The Lonsdale Gallery in Toronto. Videos produced by autistic people and activists played on a loop so that the audience could watch as well as hear the voices of autistic people, some of them who used text-to-speech devices. YouTube was new at the time where people uploaded their videos. The generous size of the gallery befitted the echo of the videos — an autistic echo as the videos kept playing while the audience read signage and looked at artwork; a continual reminder of autistic presence. A room full of conference materials (conferences organized by and that included autistic people, such as Autism Network International’s AUTREAT) was made available so that visitors could conduct their own research. A glossy magazine full of writings and artwork by autistic people as well as interviews of two major artists in the exhibition, Larry Bissonnette and Jonathan Lerman, was distributed.

To accompany the exhibition, the lecture series was held at the Al Green Theatre in downtown Toronto. We produced a glossy brochure with the artwork and the presentations of our autistic and non-autistic presenters along with the purpose of the event. We intentionally located the event in the middle of the medicalization of autism and the “tragedy” model of disability and positioned autistic lives as a “joy.” This was done by writing title ideas down and distributing among the autistic advisory committee for comment and approval. The final decision for the event/exhibition title was reached by consensus of fifteen autistic people. The predominant othering of the autistic person was countered in the “redefining autism” part of the title in order to reaffirm agency and made the event activist in nature. It meant to stare back as a result of being stared at. Just recently, The Autism Acceptance Project which staged the events, has been recognized by The Autistic Self Advocacy Network (ASAN) as “one of the most important events in the history of autism acceptance.” This is a step to autistic people claiming their own histiory.

The Importance of Record Keeping:

With respect to record-keeping, we keep originals and make, then bind copies of newspaper ads and articles that gleaned a great deal of media and public attention at the time. All the lectures were taped and we will get permissions to get them posted online in an upcoming new iteration of the TAAP website. As for the exhibition, the content was photographed, so we have a few records in this format, although there are not enough to reflect the depth and scope of the exhibition itself. It is here I would recommend better photo and video recording and more thought into saving, archiving and disseminating the results and content of events. I had posted the limited exhibition photos online at The Autism Acceptance Project website (www.taaproject.com) , along with the submitted artwork and writings by autistic people. Recently, as Reaume predicted in his essay, we lost that information when the website was hacked earlier this year. Not all of our content is recoverable.

Also important is the abundance of resources and contributions at Neurodiversity.com, the work of ASAN (The Autistic Self-Advocacy Network) as well as other major agencies and projects run by autistic people prior to and after TAAP. Specifically, nerodiversity.com remains one of the websites containing and assembling significant autism history that is at risk of being jeopardized if not kept in hard-copy. Specific and notable to Canadian autism history is Michelle Dawson, a Canadian autistic researcher. Her work, under the umbrella-title, The Misbehaviour of Behaviourists, is a significant piece of the history of how autistic people are mistreated in Canada (The Auton Case, The Human Rights Tribunal, and her exclusion at Autism Society of Canada). She has recorded her work at the website No Autistics Allowed (www.sentex.net/~nexus23/naa_03.html). These are only three examples of many more autistic-run online organizations and individuals — all which must be preserved, recorded and interpreted. This is something that more researchers may wish to consider.

Can An Autism History Really Exist?

“…we have to value all aspects of our past and to instil this value in others who keep these records so that future disability histories can be preserved, written and debated for generations to come,” says Reaume. “In doing so, the historical memory of our collective past can, one would hope, make for a better future where disabled people are not marginalized and oppressed as has so often happened in Canadian history. The history can influence a collective sense of identity and political engagement. It can also influence public policies that have a direct impact on people with disabilities as policy-makers learn from the past while being influenced to improve practices in the present.”

I would wager that most people don’t acknowledge that a history of autism either exists, or could exist. When autistic people take note that they “don’t exist” in the consciousness of society, it would be difficult to own a history. In an activist vein, neither the term autism nor the recognition of autistics as valuable or capable, even within the context of severe impairments, exists as a widely accepted definition or understanding of autism. Within Critical Disability Studies, there is a lack of use of the term autism as we otherwise hear of the deaf and blind communities, one might argue, precisely because there is little written about autism in history. This connotes that there is still not enough citation of autistic identity and history, even within Critical Disability Studies programs, although there is acceptance that this is an area in need of development.

As someone invested in autism, rights, inclusion and autistic citizenship and identity, I feel this absence when reading Reaume’s citations of particular disabilities written in historical contexts, likely in light of a recent diagnostic label. In Critical Disability Studies, autism is lumped under the broader label of intellectual disabilities. Yet this lumping often ignores the particular needs and struggles within this community. While labeling can be dangerous and problematic, it can also lend itself to assisting and accommodating the unique needs of this population. Autism is unique in many respects, and requires a unique set of teaching methods, not analogous to, but parallel in terms of customization of education as we do for the blind, deaf or dyslexic communities. Autism also shares its history with the wider disability movement. It also intersects with race, gender, cultural, and socio-economic factors. It is important to note that while we share history within the context of our times, and with groups that may share discrimination issues, needs and histories are still unique. Further, not every autistic person shares the same experience, personal history, or opinion. In keeping with Reaume’s call, these are some more reasons to pursue historical autism research.

So we need to keep telling our stories. Reaume cautions us, however, not to exclude or revise history. Problematic approaches to history can include hagiography (making disabled heroes), presenting disabled activists as “devoid of flaws,” or histories which reduce medical interventions as “automatically oppressive.” To this he reminds us to value “all aspects “of our history. I would add, an “inclusive history.”

Research in autism is dense with analyses of cause and behaviour. I often wonder how far we’ve come from The Age of Enlightenment which uses its scientific subjects to deduce not only the nature of man, but its abnormalities thereby reinforcing the concept of normalcy and perpetuating our binary understanding of disability — the normal versus the abnormal. Neuroscience inspires us with a promise of understanding our intrinsic nature and raises bioethical concerns. Typical to how we’ve acquired knowledge to-date in research, we use comparative scientific methods. Counter to research that merely objectifies autistic people as subjects, and normal-abnormal viewpoints, we have vibrant autistic community who argue that we are not just the sum of our genomes. Researchers often overlook autistic voices – in the various forms that autistic voice rises up — and perhaps unwittingly threaten autistic agency. It will be curious to look back at our history, if only we interpret it ethically and save it for future generations. We have to begin with the research of autism history in many contexts and keep records, preserving them from the threat of losing information on the Internet, and assert the existence and the complex lives of autistic people.

Reference:
Reaume, Geoffrey. “Disability History in Canada: Present Work in the Field and Future Prospects,” Canadian Journal of Disability Studies 1:1 (2012): 35-81.

Autism History and Identity and Why We Need It

Filed Under (Autism History, Book Reviews) by Estee on 06-09-2012

I’m back at York U and have taken it upon myself to persue my M.A. in Critical Disability Studies and focusing on autism in every context I have time for. Outside of general readings, I noticed two books I’ve pre-ordered and eagerly await to devour:

Far From The Tree: Parents, Children & The Search for Identity by Andrew Solomon and Autism: A Social and Medical History by Mitzi Waltz.

“Disabilty” is a relatively new word in our language set to describe the social barriers that render some people unable to participate. It isn’t a word that we will find in historical records about disability. Rather, we find words like “lunatic, idiot, leper, cripple,” to name a few historical references to disability. While the history of disability is a burgeoning subject now, my generation never studied it in school. Some of us may not have even studied civil rights history. While we can locate histories in texts, records, art, and now through oral histories, we are just beginning to recognize that uncovering history is a very important aspect to identity. All of our histories are important and so many of them go unrecognized and untold. I remember learning British History in elementary school, and feeling valueless because my history was ignored, not validated, and considered not worthy of digging into. So many immigrants or different ethnicities feel the same way, although we have growing bodies of history that are now being taught in schools.

While autism memoirs are a way of telling our history now, we can do more to reach back and find autism in history. Uta Frith and Harlan Lane are two authors that come to mind who have written about specific autistic individuals in history.

Autism in history is a subject that requires much more attention. I’m hoping that the simple binary of “medical versus social model” of autism history will be avoided in the books about to be released. “Rethinking this polarity is what historical research and methodologies has to offer disability studies.” (Anderson and Arden Coyne).

In terms of identity, autistic identity or the identity of families with an autistic member, it is important to avoid the stereotypes of this binary that we encounter, especially in autism “advocacy,” although it would be an important a study unto itself of how we view autism today.

Our identities are complex, located within race, gender, income, nationality, culture, and so much more. We need to challenge ourselves to move away from the idea that all experiences of people with disablities, or their family members, are “conflated.” (Anderson & Coyne). History must also be viewed through the prevalent views of the time period, and we cannot impose of modern views upon it, for our interrpretations would be skewed. It’s more enlightening to look at history and compare it to our views today and in how we might improve as a society.

I hope for more literature on autism and history. I’m not of the belief that we all need to be autistic to write histories about autism but the practice of locating ourselves in any research must be something we undertake more rigorously, upfront, by stating our own views, considering our bias, and offering our biographies. I’d like to see this not only in social research, but also in medical research. We need to promote further studies to help define autistic identity. If we do it carefully and ethically, we could assisst with the rights of the autistic person in our society.

Reference:

Julie Anderson and Ana Arden Coyne, “Enabling The Past: New Perspectives in the History of Disability,” European Review of History 14:4 (December, 2007), pp. 447-57.

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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.