What’s the Problem Represented to Be? Autism, School and Policy Musing

Filed Under (Government Services, Human Rights, Inclusion, Institutionalization, Policy, school, Single Parenthood) by Estee on 22-04-2015

As Adam school closes, we have our Plan B which does involve his acceptance into a high school language arts community in a school devoted to social justice. Adam is in grade seven but will jump a grade. Some might say this is Ironic, no, for a child who some therapists said couldn’t understand, let alone speak fluently? But it won’t all be in school. In thinking about the schools, policies and systems that are currently in place for autistic people in Canada, I came across the following:

“Heidegger says we are accustomed to having conditions given so that we can plan out definite results. We are used to being able to plan, to calculate, and when we cannot do so, we feel out of our depth…” I fell onto this while reading “Our Dissertations, Ourselves” (2014) but it has another meaning for me. I have promised Adam (and myself) that I would never put Adam into an institutionalized setting/school or group home. The IBI program that I strongly critique is anchored in calculations and definite results or outcomes, even when they are built on false promises because of false assumptions/premises. We want to depend on others to much of this for us… to solve a “problem.” In this, I like what Carol Bacchi asks “What is the problem represented to be?”

This is the core of how systems and autism policies are built.

I think of it this way, we really shouldn’t launch into parent-hood without recognizing that no matter who the child will be, there will be challenges, systemic and otherwise. The neoliberal system also in which we all live works against children by suggesting that everyone can work (and this is also disguised as fulfillment and leisure which often creates a tension with domestic work). I admit I resent this tension. Parenthood requires all of me. It requires that I work outside of existing conditions neither serve Adam nor our values. It is not easy to work outside of systems, or meander in and out of them as we see fit. But right now, we feel it’s necessary.

Reference:

Christine Sorrell Dinkins and Jeanne Merkle Sorrell (2014), Our Dissertations, Ourselves: Shared Stories of Women’s Dissertation Journeys. Palgrave Macmillan

Mental ability and the Discourse of Disease – another comment on a Globe & Mail article on “Treating the Brain and the Immune System in Tandem”

Filed Under (Accessibility, Critical Disability Theory, Disability History, Discrimination, Ethics, Eugenics, Identity, Inclusion, Institutionalization, Intelligence, Media, NEugenics, Newgenics, Research, Science, The Autism Genome Project, What is Disability?) by Estee on 19-01-2015

Biopolitics_full

Again, the suggestion that mental illness – an umbrella term under which autism has also been thrust – is discussed in terms of biological disease. Says the Globe & Mail this morning: “It probably brings us closer to hammering in the idea that mental illness is a disease… It’s a disease we don’t fully understand.” You can link to the full article here by clicking this sentence. Let us put aside for the moment that our medical journalism lacks any critical thinking or understanding of a now broad oeuvre of disability theory and literature. A critique of the media is indeed part of this blog post. Journalism has become as cheap as reality-TV – let’s make something out of nothing. Sure, I’m a cynic, and I tire of news reports on autism and the discourse of mental illness as disease. They are indeed a big obstacle to much of Adam’s progress in terms of how people accept and view him.

The “great” modernist project has been built around not only biology, but revolutionary biology. This includes environmental – internal and external biological causes for “mental illness.” There are two components to that sentence to unpack; the first being that the modernist age has been defined by production and individualism. The notion of autonomy is conflated with the working citizen who fulfills the Social Contract by virtue of pulling oneself up by one’s own boot-straps. Simply put, it stands to reason in this view that our biological goals have largely been built on supporting what is a statistically “normal” “good”-working body. This was indeed a part of the Eugenics Project. Any body that falls beyond the bell curve, continues to be deemed a financial burden and a cost to society. Therefore, the creation of a dependent body is morally judged and biologically defined. This is typically what is constituted as a social construction under which we have created institutions, special education, early intervention and the like.

modernism-post-modernity-5-638

I am tending to envision (as do others) our present age not simply a post-modern age – although I prefer post-modern theory to redefine the human and extend to other ways of knowing outside of the medical model – but a bizarre hyper-modern period (Umberto Eco used this term in hyper-reality, aesthetic, theory). Briefly, this means that we have extended the Enlightenment project – the one that created modernity in search of normality – into overdrive, seeking to land the first man not on the moon, but to create his or her “theory of everything” to define disease – or the right or wrong kind of human. The first discoverer wins the big financial and reputational prize. Disability theorists do not en masse agree or disagree with the implications of biological alterations, and the use of technology has indeed proven to change the lives of many. I do not have the space herein to discuss all of these aspects.

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Instead, let me point to a belief that every research project must create a cure as good as it was for polio. I mention this as an example of the drive to cure diseases of all man-made kinds as well (meaning the socially constructed ones). This raises all kinds of important questions about illness and pain itself including the right to live, die, moral judgements about illness, and so on. I am not mentioning polio for these reasons here, but as an example of how a drive for any cure or human improvement has taken on hyper-funded business investment in research and competition. As such, I am citing the profit incentive for medical research. The two tied are not necessarily wrong until or unless we examine our motives.

I challenge and disagree with many theorists (or bioethicists) who may purport that it is better to separate any linkage of today’s genome and biological research with early twentieth century eugenics. I believe (as Rembis, 2009; Hubbard and Wald, 1999) that we continue to link behavior with biology and have hybridized these into “mental illness/health.” This umbrella term seeks to broaden medical diagnostics from which many industries may profit, namely pharmaceutical and therapeutic occupations. The DSM V is nearly big enough to take a bullet, and it will continue to expand so long as we rely upon a medical model as our only source of knowledge. As such, autism numbers will continue to increase within this model, not because of something environmental or biological, but because of how we imagine and create discourses.

It’s not looking good for autism from where I sit under this rubric, I realize this. We all know that autism, like many other cognitive disabilities, are diagnosed by observation for which we have created an extensive lexicon of disease and abnormality. Bio-markers become a shared lexicon infused with moral implication. Yet, we also know that there are many other ways of knowing and a plethora of disability theory is ignored in most discussions driven by journalists or medical communities. Also, let us not ignore the criminalization of behaviour (an example of moral judgement stirred and shaken with biology) as a reason to create new research business. In this, please test my theory – there will not be one news report of a criminal act that is not linked to mental illness today. I’m not trying to create a conspiracy theory, but there is a definitive financial drive for ameliorating many bodies, and we all take a part in creating the discourse. (Reinforcing discourses is another blog post).

I will agree with Rembis when he states,

“Any informed discussion of the limits of behavioral genetics research must take into account the historically contingent socially situated nature of impairment itself. Such an argument would not deny the existence of impairment. Instead, it would begin with a critical analysis of the social, medical, scientific and juridical discourse at the root of taken for granted classifications of impairment. This type of critical analysis is already taking place in some of the arguments concerning mental “illness” and mental health services …as well as those concerning the social applicability and general reliability of the results of intelligence tests “(Rembis, 2009, 592).

He also bluntly states, “The recent emphasis on genes stems in large part from experts’ drive to tap into the hundreds of millions of dollars made available primarily through NIH Human Genome Project, as well as through huge multinational pharmaceutical companies. There remains, however, a much deeper desire among scientists of the world to bring the vagaries of human reproduction and development under scientific control that continues to drive much of genetic research. Only when we begin to think critically about taken for granted categories of impairment and examine the history of eugenics in a new light will we be able to assess the implications inherent in current and future efforts to control human reproduction and behavior.” (594).

Genetic discrimination (Hubbard and Wald 1999) is already in our midst as the “agents of truth” – a term used to describe how we take the words of medical researchers and how we view them (Rose and Rainbow, 2006) – have already defined autism as a genetic abnormality. Note, that I don’t agree with Rose and Rainbow, however, when they state that biopolitics is not about eugenics as much as capitalism and liberalism (211). Contrary to their position that we need to develop new conceptual tools for critically analysing how biopolitics plays out, I believe that it is impossible to untangle modernity, capitalism and our propinquity to find biological causes for aberrant behaviour and mental illness – morally judged designations with supposed (bad) economic implications. This blog post does not do all of these concepts and arguments justice; however, parents and professionals must all challenge the reasons for the propensity for researching biological causes for autism and/or mental illness. Without doing so, we risk losing opportunities for creating a vibrant future where autism is accepted and where our children may live in peace with education, friendship and family. It is a point of fact that charities such as Autism $peaks spends less than 4% of its budget on services for autistic people (services is another blog post too). Far from being utopian, this thought represents a need for examining social mores in order to overcome the obstacles that prevent social inclusion…for every body. Also, I will agree that the body is under great transformation in terms of identity politics in the way we imagine it, and the other ways of knowing and imagining it can and does exist outside of medicine.

Recently, I am interested, as a woman, theorist and mother, in the lovely intimacy I share with my son as caregiving can be a very physical act. Touted as a burden by many charities and the like – including fellow parents who yearn to have an independent child – I have been grateful to be put into a situation where my expectations have been radically altered; where caring has become an important part of my treasured (ever-changing) identity. This has been created by the reality of caring and the mutually negotiated relationship I share with my son. Therefore, reading accounts of genetically ameliorating autism, or relentless and repeated suggestions that disability (often shoved under the “mental illness” umbrella) is biologically caused or wrong, is troubling for my son and I on many fronts, some of which I have outlined here. Perhaps the Globe & Mail writer Wency Leung may take some of these points into consideration. We need to imagine otherwise.

References:

Hubbard, Ruth. Wald, Elijah. 1999. The Gene Myth: How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators and Law Enforcers.Boston: Beacon Press.

Rembis, Michael. 2009. (Re) Defining disability in the ‘genetic age’: behavioral genetics, ‘new’ eugenics and the future of impairment. Disability and Society, 24:5, 585-597.

Rainbow, Paul. Rose, Nikolas. 2006. Biopower Today. Biosocieties. 1, 195-217.

Humber College Cancels Tunnel Tours For Tomorrow ONLY (re: The former Lakeshore Asylum)

Filed Under (Activism, Institutionalization) by Estee on 30-10-2014

I am writing to let everyone know that Humber College, thanks also to the work of Tracy Mack and Geoffrey Reaume, have canceled their tours for tomorrow ONLY of the former Lakeshore Asylum for Halloween tomorrow. I hope we can look forward to tours that educate the public with the input of the disability community and psychiatric survivor community. We will be watching.

Humber College Denies “Ghost Tours” at the former Lakeshore Asylum

Filed Under (Institutionalization) by Estee on 29-10-2014

This is in regards to my recent post that Humber College, which used to be named “The Mimico Lunatic Asylum,” or the “Lakeshore Asylum conducts “ghost tours.” We have asked that the College discontinue the sensationalized tours that demean the experiences and the memories of the people who were incarcerated there. The denial and sensationalism of the wrong-doing here is disturbing. The response (see below) appears to dismiss the disabled and psychiatric survivor experience and seems counterpoint to the recent admission of wrong-doing by the province and a $35 million class action lawsuit won by the victims of the Huronia Regional Centre, otherwise known as the Orillia Asylum. The letter below from the College also does not have a sense of this gravity and does nothing to dignify the memory of those who lived there which we consider an uncritical approach.

Please help write and stop these tours as they are in order to respect those who passed there, and what they endured.

Here is the video promotion of their “tours”:

And here is the response (form letter) that many of us who are trying to stop the tours received from Wanda Buote:

One of your classmates also emailed me today. Our intent is not to be degrading but a vehicle to allow our students into the tunnels to hear more about the history of our grounds. Many students have asked for assess to the tunnels as they are fascinated with it and want to learn more. We only open the tunnels during Doors Open Toronto and Culture Days. Yes, there is some folklore associated with the grounds but it not something we focus on. The Lakeshore Campus has a much more interesting story to tell–one which surpasses illusion and fantasy. The event is called the Lakeshore Tunnel Tours and focused on the architectural and history of the hospital. Steve Bang volunteered his time, so that money raised could be given to the United Way. United Way is an amazing charity as it supports so many disadvantaged populations – such as youth, seniors, addictions and others that are facing barriers including the mentally ill. Humber is working hard to reduce the stigma around mental illness. We have come a long way since the 1800s but we recognize that work still needs to be done.

As a part of the tour, participants are provided with information about the original buildings, which would become our Lakeshore Campus, were once part of the Lakeshore Psychiatric Hospital. When the hospital opened in the late 1800’s, it was considered a progressive institution with advancements in moral therapy; patients were actively tending to the grounds, working on an on-site farm, and assisting in operating the facility. The apple orchard which many of the patients attended is still growing at Lakeshore.

As the hospital moved into the mid-1900s, insulin shock therapy was introduced as a form of treatment (Barc, 2005). As we continue to filter through archival materials associated with the hospital, we cannot ignore the conflicting perspectives of medical treatments and human rights. Without the technologies and knowledge that we have today, patients were often diagnosed and institutionalized for conditions as rudimentary as sun stroke. They were referred to by doctors as ‘stupid’ and other derogatory terms which are stamped on patients’ formal records. This history is not unique to the Lakeshore Psychiatric Hospital; it was commonplace language and practice which saw parallels at many other psychiatric institutions across Canada at the time.

Aside from these tensions, the hospital held a strong place in the surrounding community. Jem Cain, Humber staff member and local resident, grew up while the hospital was still operational. She says, “The hospital was part of the community, people were never afraid of the hospital or patients. Everyone felt that their kids were safe playing in the grounds since it was a beautiful park that integrated the hospital with the public”. When the hospital closed in 1979, the community respected these grounds and advocated to government to preserve its heritage.

Although the hospital was considered progressive for its time, we now exist in a very different context. This new context does not see this campus as the backdrop to horror stories, but thinks critically about the stigma and stereotype of mental illness. The Lakeshore Campus will open a new Welcome Centre in 2016, which will host an interpretive space about the campus history. It will be a place which does not hide, misrepresent or glamorize the past, but instead uses our history to create a broader community consciousness. It will look at not only the past, but be a place of active engagement where visitors can reflect on the present and envision the future.

Wanda

Wanda Buote, B. Ed, MBA, CHRM
Principal Lakeshore Campus
Humber College Institute of Technology and Advanced Learning
3199 Lake Shore Boulevard West
Toronto, Ontario, Canada M8V 1K8
Room A110, Tel. 416-675-6622 ext. 3332, Fax 416-252-8842

May we remember that as institutions close, we retain an attitude that is now witnessing autism “campuses” and other centres where people are segregated from society. Like the birth of the asylum, these autism and disability centres are often coined as wonderful and peaceful places for people to socialize, develop vocational skills and reintegrate into society – as forward-thinking by the non-autistic and non-disabled communities. When we forget what institutions were, the principles and values that gave birth to them, and the real abuses that occurred behind their walls, we forget the people who lived in them. It appears the Humber College Campus cares more about the flattened accounts of the people who lived without the institutional walls which counts as an act of erasure. As such, we will continue to see institutional rebirth in different forms and language (i.e. like the word “campus” to replace “institution” which can manifest in the same outcome). By doing this, we not only risk stigmatization, segregation and criminalization of people with cognitive and other disabilities and “mental health” issues, but we can guarantee it.

Institutions are not just places, they are attitudes. In this sense, they exist when one person exerts their power and privilege over another; where disabled people are grouped together without choice; and where, behind closed doors many abuses can be obvious or subtle – some under the guise of “intervention” and “remediation.” We live in a time when autistic and other disabled people still struggle for inclusion and acceptance. There are many barriers to overcome, and to many of us, they feel like iron mountains. Sensational approaches help to proliferate very dire consequences for disabled people and we are witnessing continued segregation that just gets easier with making people with differences “the other.”

It is important that Humber College reach out to the people who not only survived these experiences for their input, but also to the people working to restore the memory of these people and these places – like Huronia, The Burton Blatt Institute and our very own Geoffrey Reaume in Toronto with an expertise in the history of institutions in Toronto – just so we never forget. I hope that Humber does reach out… we want to work with you.

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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.