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

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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.

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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.

Disability Issues and the CBC

Filed Under (Media) by Estee on 18-01-2013

I am finding myself listening to CBC Radio One every morning. I would like to applaud the CBC for dealing with one of Canada’s most pressing human rights issues – that is the stigma of people categorized with “mental illness,” “autism,” and “people with disabilities” as the most devalued of our citizens. I hope for continued coverage on legal, policy, attitudinal and inclusion issues and listening to the perspectives of the disabled in our community, and allies coming from a critical disability perspective.

Autism: The Target

Filed Under (Activism, Autism and The Media, Discrimination, Ethics, Media) by Estee on 17-12-2012

I have to tell you that I predicted the autism label would be used to describe the perpetrator Adam Lanza and the horrific shootings at Sandy Hook Elementary School. Before I proceed, let me please contribute my heart-felt condolences to everyone who has suffered by this, and who have lost their dear loved ones.

As I read through my Facebook page this evening, autistic people are frightened for themselves. When I hear of a crime like this, I hold my breath just waiting for someone to spill out the A-word. When I go to the doctor now, he says that when my son will become an adolescent he will become violent. A doctor?! This, my dear readers, is the level of ignorance most families experience. When we conflate violence with a type of person (race or gender) or disability is not only unethical – it’s dangerous to the welfare of autistic people.

We must work to differentiate “mental illness” with Aspergers or autism. Even that term is riddled with blame and stigma. I guess I have to say here that any person is capable of violence. You can be neurotypical and be violent. You can be anything or anyone and be violent. Violence is not a blanket trait of autism.

Our human history is laden with the criminalization and demonization of people with disabilities. When society fears something – be it environmental changes, our fears of what a fast-paced technological society is doing to humanity or now this (the increase of violence as characterizing the perpetrator as “isolated”) – we point the finger at autistic people. Autism is a human construction. It is a label made by people and its definitions keep changing over time. I will soon put a couple of essays here on this blog to show how autism as a construction has evolved in the twentieth century, and how we have had autistic people in our history (other authors have also written much more about this).

From the blog Left Brain/Right Brain, I copied this comment from the CBS story illustrating the prejudice that abounds. I urge you to read this blog post for more information on how autistic people are being stereotyped and targeted:

most people with Asperger’s can function normally in society”, this is a false statement! They cannot function normally! That is why they give the condition a name, as to differentiate them from the “normal” and accepted social behavioral. We have a large and growing population of people with these behavioral conditions that will hinder our public and social progress. I am afraid that we will continue to see these types of violent episodes, these conditions prevent the individual from using “reflective thought”, actions are sudden and instinctual, almost animal like. If you would like know more, go read a BOOK! don’t look it up on the internet, think for your self!

Again, please go to that blog and help to stand up against unethical reporting and mischaracterization of autistic people as violent people (CNN had been reporting that Lanza had Aspergers and then retracted it). I have many autistic friends and a loving child with the autism label. There are many more issues to discuss regarding gun control, the role of the media. Autistic people seem to be the moving target for everything. Please, let’s stop the shooting.

Talking About Autism & Building Community

Filed Under (Autism Theories, Autistic Self Advocacy, Community, Language, Media, Research, Uncategorized) by Estee on 11-11-2012

How can The Toronto Star and by many autism charities address the diverse needs and views of the autism community? My concern is that there is little (if not any) of critical disability perspectives. Typically, journalists run to autism “experts” with medical backgrounds and this becomes the only lens through which we have come to understand and view autism. Autism, a classification imagined and made by humans, has become reified. This essentialist view is the most troubling for our community.

My questions of late are: How can we facilitate a respectful discourse among autistic people with different experiences? How can we include non-autistic family members into the dialogue who are also stakeholders, but whose very involvement in autism charity (which directs research) can be considered based in positivism and reflective of an imbalance of power? In other words, concerning the latter, as non-autistic parents and medical “experts,” we impose a concept of normalcy that we are discovering through autistic communication of experience that, in fact, is different from how many of us non-autistic people view things. We (typicals) consider our viewpoint over and above the experiences of autistic people. We produce knowledge that is language-based and that is taken as more true and accurate. I’m also very curious how we all appropriate such impositions upon our own identities? For instance, if you are given a narrative about yourself (autistic or not) and how you must be, do you then turn it inward (this has also been refered to as internalized ableism or oppression)? How does this effect the questions posed here?

Autism charities, researchers and news media need to consider these questions to reflect the broader autism discourse, even when many views run counter to their marketing campaigns and economic research interests (or should I say, especially when). By doing so, we may discover ways to better address the real needs of autisic people specifically. I’d like to see autism charities take up this dialectic discourse. It doesn’t have deadlines or meet fundraising goals, but this is what our community needs the most. I get concerned when autistic individuals are folded into big charities largely populated by non-autistic interests.

Feminist research has pointed to a constructive confrontation. “bell hooks (1990) declares the need for ‘meaningful contestation and constructive confrontation between different perspectives and urges the creation of safe spaces where critical dialogues can take place between individuals who have not traditionally been compelled…to speak with one another.”(Hess Biber, Leavy, 2007)… constructing a space that is open to dialogue across… voices are granted equal air time, we actually build community…” This comes from feminist research methods which has changed the way we have been able to do research. Both feminist empiricism and emancipatory methodology can provide useful examples to the way we approach autism research and community.

Reference:

Sharlene Nagy Hesse-Biber & Patricia Lina Leavy, Feminist Research Practice, London, Sage Publications, 2007.

If you are interested in a Media Analysis of Disability, See the Research done by Disability Rights Promotion International.

A Mother’s Notes From The Ghetto

Filed Under (Ableism, Abuse, Acceptance, Activism, Advocacy, Book Reviews, Critical Disability Studies, Disability History, Discrimination, Inclusion, Media, Parenting, Politics) by Estee on 13-08-2012

Like many of you, I watched the closing of the Olympic ceremonies. Today’s notes from the ghetto weave some thoughts about the Olympics, a book, a documentary, and the Canadian Charter of Rights and Freedoms.

In a waiting room this past week, Sports Illustrated lay limp and wrinkled on the table in front of me. An title about how the games were more inclusive this year caught my eye and I read it with disappointment. There was no mention of people with mental disabilities. I didn’t take the copy of the article because it wasn’t mine, and now I can’t find it to cite. You’ll just have to take my word for it unless you can find it for me.

I wanted to write a post remarking again how people with cognitive disabilities weren’t visible or participating in the games. As much as I watch the Olympics, I can’t help but see it as a symbol of our admiration of the able-bodied. Including some disabled people in the opening ceremonies and a Para-Olympian is supposed to change that view. The “main” Olympics gets the bulk of the media attention. In talking about the Olympics, then, the media coverage is a reflection of what the consumer wants to see. I’m not blaming the athletes for being able-bodied and I congratulate everyone for their remarkable achievements. I am, however, spotlighting the acceptance of exclusion.

Today I also finished Melanie Panitch’s Disability, Mothers and Organization : Accidental Activists and read about the three mothers who worked tediously to get their children out of insitutions in Canada and close them all down: Jo Dicky, Audrey Cole and Paulette Berthiaume. I read how these women lived in a time of not only gender inequality — “busy men” on boards versus women knocking door-to-door as volunteers — but also in a trail of institutions born from the eugenics movement. The first institution in Canada was the Huronia Regional Centre in Orillia, pictured above, which opened in 1876.

Ironically, as I finished reading the final chapter this morning, I tuned into the CBC documentary The Gristle in The Stew and listened to the stories of horrific abuse of the people who were labeled mentally “retarded” by professionals. These professionals told parents to just “forget about [their] children and move on.” The government film “One On Every Street” told parents that 1 in 33 children had mental retardation and described insitutions as happy places where children would be educated and rehabilitated in the name of getting them back into their communities. Not so for Paulette’s son and others like him. Her son Louis lived in an institution for thirty years before she could get him out.

Audrey, Paulette and Jo were made to feel guilty for not only having disabled children, but were also pressured to put their children into institutions and be “good mothers” for doing so. Many families lived in fear of not placing their children in institutions because they did not have access to other services so they turned a blind eye to the abuse. There was no “unity” in their struggle, for these fearful parents criticized activists against the campaign to close institutions in Canada.

While these three mothers fought (and won) to get all people out of insitutions in the name of their children, they were excluded and marginalized as “emotional” and “trouble-makers” along the way, often excluded from participating on major boards and committees. But they did not desist. These three women managed to close all institutions down in Canada, and worked arduously for over twenty years to do so. They worked in 1981 to include the disabled who were then omitted from Section 15, which dealt with equality, and secured human rights for the disabled in The Canadian Charter of Rights and Freedoms. They won an unprecedented $1,400,000 in personal dmages for 88 former residents of Saint-Theophile in Quebec in 1990 (pardon the omission of accents that I can’t access on this blog), among many of their accomplishments. They did so as volunteers. One reviewer, Susan DeLaurier says of the book, “Disability is often viewed as a narrow field of social policy, programs and services that leads to a set of parallel social arrangements that have isolated disabled people in segregated systems. By looking at the mothers of children with disabilities and their insights and researching their activism, it is hoped that disability will be viewed as a broad-based inquiry commanding social and political analysis.”

A class action law suit of $3 billion for the plaintiffs incarcerated and abused in Institutions in Canada, simply for having a mental disability, will happen in September 2013. Listening to Patricia Seth and Maria Slark, two of the plaintiffs in the documentary, made me shudder. As a mother, I already know of gender discrimination — domestic and public as a mother of an autistic child and an activist — and there are challenges with this in helping Adam. To imagine how the “accidental activists” had to wait for so long to see their children free again, reminds me why I feel anxious so often. I feel I am always looking over my shoulder and can never rest where Adam is concerned. We have to respond when advocates for any “treatment” or “therapy” which uses the same language and logic that incarcerated innocent people just a short time ago. In the ABA movement which started in Canada in the early 1990’s many of the campaign phrases and threads of logic echo like the halls of institutions. The ABA movement was founded on the premise that autistic children would recover by age six with the treatment (and now the argument extends to older ages) and would therefore no longer require “state” funding. At the time, the estimated costs of funding an individual in an institution was $85,000 a year. In 2012, I relate to the same feelings as these mothers and share their experiences even after feminism has evolved. The challenges and the way to help Adam become increasingly complex, there is resistence and fear of progress, old arguments persist and the “busy men” still exist.

Our situation remains fragile. Despite statutes, we have not achieved Inclusion for people with autism. Society does not see autistic or other mentally handicapped persons as truly valuable to our communities where definitions of “capacity” and “productivity” seem exclusive and informed by implacable economic theory. We see it at the most basic level as in extraordinary red tape in our education system and, after all, I’m “just a mother.” Despite detailed notes and expertise about our children, the public system will hardly pay attention to it. They prefer a report from a professional using standardized tests which is an exclusive and unjust method of testing an autistic person. I talked about some of this in another post about the many ways we experience exclusion. “The briefing notes by the Community Association for Community Living in 1993 noted the same: “despite the protection afforded to people with disabilities in the Charter of Rights and Freedoms, many barriers to participation still exist in employment, immigration, education and the criminal justice system.” (Panitch, p. 145).

There is another group who tell us to “never forget,” and this same standard must be advocated for the disabled who have experienced formidable abuse in their lifetimes. When Pierre Berton reported about the abuses at the Huronia Regional Centre in Orillia (pictured above) in The Toronto Star, Berton noted that after Hitler fell, “many Germans excused themselves because they said they did not know what went on behind those walls. No one had told them. Well, you have been told about Orillia.” Now I, along with others, am telling you about echoes; of the history that could repeat itself.

The Olympics is just one more timely, everyday example of using people as footnotes and keeping them in the ghetto. It is time to include all the Olympic events — special, para and everything else, under one umbrella. I work for the day when I can witness Adam attaining his full citizenship rights. Audrey Cole wrote a Manifesto with her two lawyers called A Manifesto of the Canadian Association for the Mentally Retarded in 1982:

“The Manifesto equated how the renewed constitution established the full autonomy of Canada within the community of nations with how the provisions of the Charter of Rights and Freedoms introduced a new history for people with disabilities as valued, participating members of the community. It concluded cautiously: ‘The Charter of Rights and Freedoms obviously has very important implications for Canadians who live with a mental handicap. It is not possible to determine fully what those implications might be until the provisions of the Charter are considered by the courts in the contest [sic] of real life situations.” (Panitch, p. 133).

Audrey Cole said in her interviews with author Melanie Panitch:

“Our struggle is long-standing. It will not only continue but will gain strength with every denial of a fundamental right to any person of any age with or without disabilities in this country…Outrage, as you know, can be a unifying force for the achievement of social justice.” (ibid, p. 69).

We’re living the relay race and our work is not yet done.

Reference:

Melanie Panitch, Disability, Mothers and Organization: Accidental Activists. New York, Routledge, 2008.

Torontonians: The New Snow Wusses

Filed Under (Media, Parenting, school) by Estee on 24-02-2012

This will date me. When I went to school, I used to trudge through deep snow. No, I didn’t walk three miles like my grandmother did, but there was lots of snow and we weren’t afraid of it. During recess, we’d slide down any hill we could find and even forget our snow pants. The teachers didn’t make a fuss if we came back into class soaking wet. After school, I walked back home; back through the deep snow, even blowing snow, beating like needles against my face. There were no nannies to wait for me and walk me back like there are in the city now. Parents didn’t worry about us being out there in the blowing snow. In their minds, it was good for us to outside almost all day long.

Adam has been home from school all week because of the flu. Finally this morning he woke up jumping. “I’m fine!” he declared as I entered his room. I’m so glad. One problem though: Last night, before any snow fell, I received an email from his school that it might close in case of snow. I was worried this would happen; that he’d be raring to go and get back to school and his friends, and not be able to.

When I was growing up, we never got notices like that. There would have to be five feet of snow outside our door and some severe wind for us to turn on the radio to try and hear if the school was closed. Like all children, I’d wait in anticipation to find out, and if it was, I couldn’t wait to get outside and play in it. Now we get an email suggesting the school may be closed if there is snow. The news gets more ratings with impending weather. They scare people like there’s a hurricane coming and we all better prepare. “Snowmageddon,” it’s now called — just a tad alarmist, I think, as I see a single snow flake float by my window.

The street is clear and the snow looks like it is just beginning to fall fairly gently. I’m emailing and calling, trying to get in touch with anyone who might be checking at Adam’s school. “Is the school open today? There is no snow,” I write.

I know, there’s more traffic. When the roads become icy, the roads aren’t fun to drive on. Perhaps calling in the army nearly a decade ago in Toronto after a big snow storm made everyone a little more cautious. But still. It’s just snow, and we seem afraid to let our children out in it.

Children don’t walk to school anymore. They are nannied, day-cared, and car-pooled to school. Let’s face it, we don’t let our children grow up until they’re thirty-five. Granted, I know when we are talking about autistic children, we all know they require more attention for their safety. Autistic adults may also need assistants when they are older. It still doesn’t mean we have to baby them, nor do they want to be babied. I think our over-protective parenting and super-cautiousness have negative effects on all of society. Now back to the snow…

The school is even located near the subway, you know those things that Mayor Rob Ford wants more of. That means we can even travel under the snow! So doesn’t that mean that there is a way to get around after all? They are calling for five, yes five (wow) centimeters of snow in Toronto today. That’s a far cry from the five feet outside our doorway when I was Adam’s age.

I just don’t know what has happened to us. Could it be that this is the first real snow of our Toronto winter that we’ve wimped out? Are we so excited that we have to declare it a city holiday? What happened to us fearless Canadians and the Canadian winter? More importantly, what is all of this doing to our children?

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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.