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.

The Hunt for Humanity? Some words for Ivan Semeniuk, Dr. Stephen Scherer and Dr. Mohammed Uddin

Filed Under (Discrimination, Eugenics) by Estee on 29-06-2014

I came by your article in Canada’s The Globe and Mail, The Hunt for Humanity, printed on June 21st, 2014, a little late. To recap for readers, you suggest that your project, Brainspan Atlas research at Toronto’s Sick Kids Hospital (Dr. Sherer works in Toronto and Brainspan Atlas is located in Seattle) explores the exons – the series of “segments” (including intons) that make up the human genome, are involved in human evolution. In this exploration, Dr. Uddin, a computational biologist and geneticist, sits to author the computer code comparing the relationship between “sequenced exons from thousands of apparently healthy individuals” (Semeniuk, Globe Article) and those with “mutations.” Dr. Uddin looked to Brainspan Atlas data on exons “that were rarely mutated but highly expressed during brain development” and “filtered out” to distill the genes suspected of having a connection to ASD candidates – finding some speculated connection between exons and these genes which both Uddin and Scherer now study.

Without delving into the “science” of their work, let us consider the premise, for few science writers will begin any article with a discussion of ethics and disability. Interesting because when we read articles in the Globe and other news sources, one can’t write an article about autism or disability and ethics, without getting some remark from a neuroscientist or geneticist (I am leaving the rest of this sentence for the reader to fill). No…Dr. Scherer believes in natural selection. He says, “natural selection has sculpted these genes by tweaking their expression in the brain” (Globe). Darwin’s theory, adopted by Sir Francis Galton in 1883 laid the groundwork for an entire movement that institutionalized and segregated many from society and was the basis for the eugenics movement which separated people by their supposed “genetic soundness.” This was also the premise by which the Nazi’s killed the sick, mentally handicapped, and the elderly (before the Jewish population). One need only a lesson in history, picking up original text from the period to compare the language used by Semeniuk, Scherer and Uddin to see that the people involved in this project may be treading too close to a history we must not repeat. Terms used throughout the article such as comparing autism as a mutation – using the binary of health versus mutation or worse not human (this was implied throughout) – are dangerous in that they sway, with their power of position, the general public to believe that autistic people are less than human. The entire article does more than insinuate that autistic people are not human.

Says another doctor cited in the article, Dr. Varki, “…the children of a mating between humans and Neanderthals may have been physically healthy but ‘cognitively sterile.’ The disadvantage of losing the uniquely human genetic package, even to a small degree, would have conveyed a tremendous cost in terms of social interaction and reduced their chances of reproductive success” (Globe article).

The language throughout the entire article (if you can get your hands on it as The Globe and Mail now has a subscription service online), it is rife with dangerous language. Autistic people are compared to “non human” species. But worse, as I find with many neurologists and “autism experts,” there is a gross lack of knowledge about autism from autistic people and the people who live every day with the label, and the challenges of being different than what is supposed to be “normal.” This was very apparent throughout and also at the end of the article when Semeniuk writes:

“For Dr. Uddin, who has grown increasingly aware of the burden carried by those with ASD since coming to Sick Kids, the payoff comes from watching his ideas and his number-crunching materialize into something that may improve lives…’These kids often don’t talk to anyone, or have any way to express their concerns,’ he says. ‘As a researcher, I want to help if I can. It’s us, as a society that has to come up with our own understanding of how to approach this.’

Along the way, the bonus prize may be the ability to see what it is that compels us to connect – to get inside each other’s heads – in a way that no other creatures seem to do” (Globe article).

I’ll assume, Ivan Semeniuk, you are meaning that only humans communicate, and those who do not are not human? Have you met autistic people? Have you talked with them? Have you connected with any of them or have you avoided contact (or insisted that it only happen on your own terms)?

I’m asking questions here that must be asked of everyone involved in this field. I’m often surprised at how experts haven’t met many autistic adults, or read their work. This seems to me to be a prerequisite if you state you are going to work in a field, that you get to everyone who has a stake in the outcomes of your work.

Can you see how my son is very social and just this past week, despite his struggle in forming words, has gone with his friends to the Science Centre, the farm, out to restaurants and has been happy in being with his mates? Have you seen an autistic person, Dr. Uddin, not be able to forms words well, but can express themselves with alternate communication? Have you seen an autistic person type cogent sentences at the same time making supposed inarticulate utterances? Have you investigated the actual fact that the two occur simultaneously? How important is rhythm and support to the ability to communicate and what must we all do to appreciate the many ways of being human (certainly not a natural selection theory). Mr. Semeniuk, I’d love to talk with you about research and critical theory on linguistic theory and what I call the language prejudice. This prejudice assumes that if you can’t speak, you don’t think or don’t understand, which of course is not true. It might provide a more well-rounded article on autism, ethics and the prejudice in society about autism that we all must avoid.

This, by the way, is a first draft, unedited. I am writing from my mind and most importantly, my heart as both a scholar in the field of critical disability studies and a mother. I look forward to dissecting genetic science (and your work) and the premise of discrimination.

If you want to read the article, The Globe now makes you pay for it.

“Weeds or Herbs?”: Eugenics Rhetoric Reinvoked

Filed Under (Activism, Employment, Eugenics, Uncategorized) by Estee on 26-11-2013

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I am end of term, writing papers on technology and autism using critical theory and my interest is how we invoke these to obtain work, to socialize, but also in how these shape our existence. While technology is said to open up avenues for communication, we do not heed the critical theorists warnings of Adorno and others – that there can be “no true life possible in a false world.” The question is, how do virtual realities and mass culture, mechaniziation and so forth limit the acceptance of autistic bodies among us? It seems that work to befit the body, not the body to work. This is also a feudal notion invoked by the company Specialisterne which is a software development company providing work opportunities for autistic people.

My job is to critique these structures and life is my lab. I am a mother to an autistic son as well as a single mother and I engage (and explore) in atypical forms knowledge production with my son – I attempt to resist the standard ways of producing knowledge that in fact are, to Adorno’s critique (my interpretation), relativist – that speaks only unto itself within a frame. That is, science speaks to science and we’ve adopted its rhetoric. As such, it may shape the way we think about our lives by this framework.

We cannot examine a system if we don’t try to work from without. So, when I go online to look at the company Specialisterne, which provides work opportunities for autistic bodies, it is imperative that we question how bodies may be vulnerable to exploitation in totalizaing “autistic charactersitics” as: “able to focus for long periods of time; superior ability to recognize patterns; superior visual perceptual ability” and so forth. While autistic people need to eat, and work provides important human connection (see “emotional labour”), we have to be cognizant that we are working within a system that reduces support, devalues disabled bodies and in fact, requires all of us to work longer and harder – in fact, like machines…automated…autistic. While these characteristics that may be present for some individuals, we have to be aware of how generalities about autistic characteristics may serve to oppress people.

That said, as I do my research, I was tuned in on the marketing of Specialisterne to ask if an autistic person is a “weed or herb?” (see Specialisterne’s banner above). If we are to speak, to anchor ourselves in frames of reference for how we have come to be where we are and to think about autism, we are obliged to point out that the term came from a eugenics book Weeds in the Garden of Marriage (1931) by George Henry Lane Fox Pitt Rivers. Using this object metaphor is also explored in this paper by Gerald O’Brien in Disability Studies Quarterly.

It might be helpful for self-advocacy organizations to engage in media and marketing monitoring to ensure that dignity, respect and the history of oppression is recognized, so that we may never again re-invoke the rhetoric which belonged to the eugenics movement which rendered the segregation and sterilization of disabled people mandatory. It is curious that marketing firms would not research this thoroughly.

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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.