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.

Who is Safe; Who is “At Risk?” Some More Considerations Before April

Filed Under (Ableism, Activism, Advocacy, Charity, Disability History, Government Services, Inclusion, NEugenics, Newgenics, Pity, Research, school, The Autism Genome Project) by Estee on 25-03-2013

As we head into April, I thought I’d post Protest on the Plinth which states that the value system from the Nazi era hasn’t changed much today. If people make out disabled people’s lives to be “intolerable,” then how can we make safe legislation?” asks the disabled woman in the video. It is not egregious to point to what happened to the disabled during the Nazi era and unpack the value systems that linger today – that lead to the belief that disabled lives are an intolerable economic burden on society. Posters of the “costs” of the disabled to the German “folk” were commonplace.

Systemic mechanisms (government programs, schools, corporate bodies) that tell us what kinds of bodies (and minds) we are supposed to normalize, regulate, or get rid of, or what are “acceptable” minds and bodies. Charity campaigns don’t typically tell donors that they need to be patient as corporations or as individuals; that they to collaborate with disabled people, work alongside people with disabilities, or that it is a disabled person’s right to be educated (instead of remediated as a “ramp” to normative education -see Moore v. British Columbia, 2012). They don’t talk about autistic and disability rights. Charities are busy raising money, mainly, for cures.

When scientific and representational linguistics point to children “at risk,” we might instead ask, just who are we trying to “keep safe” and why is society so dreadfully afraid of people with disabilities? Remember to consider language and how it both reflects, and shapes, the way we consider people with the autism label. From where I’m standing, however, we are definitely at risk, not from autism, but from an intolerable society.

And don’t forget to check about the counter campaign to “Light It Up Blue” by checking out the Autism Acceptance Day Blog Postings.

Exporting The Autism Genome Project To China

Filed Under (Newgenics, Research, The Autism Genome Project) by Estee on 10-11-2012

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The Toronto Star has dedicated a series of stories about autism. It’s cheaper to hire a scientist in China — about $16,700 a year reports the Star’s Tanya Talaga. Autism…the “creeping, silent epidemic,” (yes that language is still being used which should tell us that the reporters aren’t reporting from a critical perspective), and it “needs to be cured like cancer.” Bring on more puzzle-washing – Autism Speaks still runs its campaigns like the very controversial cancer charities (aka: Pink Washing).

There’s no mention of how the autism category keeps changing with the years and changes with society’s fears and imaginings. There’s no interviews with autistic individuals (yet), and noon from the disability rights movement to support autistic people. I’m hoping they will come out to support us.

Like our economy, we focus mapping autism genes now to China — the company BGI has apparently very big machines running twenty-four hours a day, seven days a week to break down DNA. BGI has “mapped the genetic code of the giant panda, a grain of rice, a silkworm, soy, tomatoes, chickens…” Dog gone it, let’s find the hundreds of genes to cure autism and then the economy will be well again.

I mean, isn’t this what it’s about? It’s certainly on our minds with the “fiscal cliff” just ahead. “Most children with autism are rejected by kindergartens and schools…staying home becomes the only option for a large majority of these children…by leaving them on their own, these children lose all chances of developing their potential talents that they originally might have,” reports Tanya from the Star.

Let’s break that down. Yes, access to schools is a big problem. The Supreme Court of Canada just ruled that public schools now have an obligation to accommodate to which The Globe and Mail editors reported would “bleed” from other programs. The Globe editors stated that the Supreme Court “overstepped their authority,” but I wonder if they would have said the same had the ruling be in favour of segregating children with special needs. After all, the Toronto District School Board just cut its special education programs and Educational Assistants as a cost-saving measure. Children with special needs are expendable. It seems children with special needs are a huge economic burden, or so think the Globe editors and a whole bunch of other people.

Next, I’m wondering about those talents, after all. The Star says that autistic children have “potential talents” that they might “originally” have. Is the writer suggesting that autistic people have talents if they were to become normalized or that autistic talents in and of themselves are not being nurtured and educated? Is the journalist accepting that autistic people have any talents or potential? If so, it would go against Globe Editor notions of talent and shall we say, productivity — so central to our epistemological understandings of shall I put it, the industrious person serving the economic well-being of the state.

Finally, and I will be writing more posts in response to The Star’s one-sided, unbalanced reporting so far, is this then the reason to cure autistic people; because it’s hard to get into schools? This for me is the most frightening absurdity of the article. It is the notion that the blame (and we’ve tried to blame mothers, and now it’s the old fathers), on the individual body. The onus is on our bodies to change, not on society to change it’s attitudes and systems to support autistic individuality and yes, potential — body-politics indeed. Further, the fact that we’ve exported this work to China where people are worked to the bone in huge factories, does nothing to soothe me or make me happy about finding the autism genes. It points so strongly to the fact that we have exported to China the creation of the great Newgenics machine, and we do it gaily. Think of China and sex selection and then to the issues that if say, autism is found to be more common in boys than in girls, that would make sex selection likely, okay.

I think that the autistic self-advocacy movement and allies have to do something much greater now . We are doing the hard work for sure, but these large spread gigantic projects without equal critical reflection makes me worried and I hope you are too. I think we have to gather to run a critical reflection campaign devoid of propoganda. We want society to not just see us and help us for who we are, but consider our rights to be who we are and to have assistance. First, we may wish to begin by using The Autism Project as a platform as the creators of the autism “problem,” not autistic people. Autistic people and families require a set of complex supports and understandings also because not every autistic person or family is alike. I would like to ask reporters to do a finer job of doing real, even emancipatory journalism and not spectacular reporting from a neurotypcial birds-eye view in the name of selling more papers.

Upcoming in The Toronto Star’s Autism focus will be topics on “diagnostic odyssey, navigating school, transition to adulthood, mothers on the spectrum, ageing with autism.” We’ll soon see how the stories are covered, and I’m sure there will be stories that we can all relate to. I want you to watch, however, for who and what will be blamed in order to solve the autism “problem.”

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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.