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.

Emerging Tensions: Puberty, Autonomy and Safety

Filed Under (Aides and Assistants, Anxiety, Autism and Learning, Behaviours, Communication, Development, Family, Identity, Inclusion, Intelligence, Living, Love, Movement Disturbance, Obsessions, Safety, school, Sensory Differences, Single Parenthood, Transitions, Travel) by Estee on 13-12-2013

It’s the end of the term…I need a long break and so does Adam. His anxiety went up as soon as the clocks turned back. The darkness brought about a new mood, Adam’s ticking went off the charts and he started a new tick – a screaming tick. He wasn’t happy – he couldn’t stop it as the pressure mounted on him to stop. I felt pressure in trying to help him, because let’s face it, screaming disturbs the peace. It’s alarming. With it, Adam’s flight-fight prompts him to bolt when he sees pathways and stairwells. These are all the signs that Operation Calm Down had to be put into effect. By virtue of naming it so, it’s not the first time we have implemented it.

Dad took Adam on a short vacation and this allowed me to have one too. On my yoga vacay, I met another dad with an Asperger’s son. He too mentioned that his son ticks and these anxiety attacks, let’s call them for now, make it difficult to get back to schoolwork. His son’s grades are going down, he said. So too, autistic autobiography reiterates the length of time it requires to self-regulate…sometimes days. Although I’ve been busy with PhD study, I realize the patterns of Adam’s distress tends to be at regular intervals during the year, and after sickness. Now that his body is changing as well as his needs, I am considering a leave-of-absence to help him, but also to help myself in so doing.

In thinking of Adam’s life and the very complex anxiety he has, his motor-planning difficulties, his frustration so apparent as he tries so hard to talk (the other day he got so frustrated, he picked up a pencil and in his chicken scratch wrote that he wanted to go to “gramma’s house”), we can’t always expect a learner like Adam to spend day-after-day exactly the same. The seasons change, there are new anxieties in life and we all need breaks. This is one of the most fundamental obstacle I can think of in how we teach children in general – in chairs for too long, in small rooms, with little outdoor exercise because of liability issues. It’s not one person’s fault, per se. It’s how we’ve built our society. We live in cars, in buildings and we don’t get out much. If Adam had an outdoor learning environment as a major part of his learning experience, I think he would be able to take in much more (outdoor education is decreasing but can be made accessible to people with disabilities). In the summer with lots of activity, for instance, he can talk more – and this is a feat for someone like Adam.

It is therefore very difficult to be talking grades, assessments, intelligence and so forth without recognizing that, living in the settings that are the way they are, that my autistic son will be delayed in his learning. The focus is far to much on intelligence (or ideas about intelligence) rather than somatic knowledge, difficulty and other ways that we can learn. I know this because when Adam is “on,” and there are adaptations to his learning, he can learn. I am writing in these terms because when looking at sites or articles about autism, the terms and ways of thinking about intelligence and learning are so “matter-of-fact” or normalized that we forget about how other kinds of learning can take place. This makes so many people, the forgotten ones. In essence, I’m trying to move away from a linear model of development and learning which doesn’t work for many people.

When the body has to spend so much time readjusting and becoming comfortable, the rest of the school work (at a desk in a chair…) has to be put aside. It would be wonderful for schools and educators to think about this a little more – to integrate movement into every aspect of the day including field trips and outdoor activities – even in inclement weather (my parents never protected me from it). I fear with our autistic children in Canada, that we are growing more back towards re-institutionalization in a different costume; we segregate and we isolate in order for our kids to be “safe.” In this, I appreciated mother and author of the book Spark, on her autistic son, namely, her “philosophy of muchness.” Never stop exposing (even with ticks, flaps and screaming) autistic children from many things – theatre, music, the outdoors, and accept the difficulties and make room for them.

We need to change the way we look at the length of education – since not all bodies cannot finish high school by the age of 18 (or 21). What other modes of education might we employ? Considering this is not as much an “intelligence” issue (I hesitate because I do not like to promote intellectualism which I find further separates people) as much as a somatic one.

Which leads me to some new revelations for me as a mom: that Adam’s “voice” is a part of his growth. It’s hard on me to watch him in a kind of pain from which he can’t escape (sometimes the ticks are a loop he can’t stop and sometimes they are willful – one “behaviour” can serve many different purposes) but also, I want so badly to give him the tools he needs so he can gain some latitude in his life. His life is so restricted with people always watching his every move – and this is, as I mentioned, for safety reasons. I often wonder, if given a great expanse of land to explore, could he feel better? What will his choices be for how he needs and wants to live his life? How can we support that? How do we stop protecting (or at least let up a little) in a dangerous world? I am certain some of Adam’s stress comes from having very little autonomy, and although he is strong and willful (which I believe will bode him well), if you can’t communicate fluently in our society, or you can’t cross the street by yourself, your autonomy is limited. This, of course, is where the concept of supported-decision making and assistance comes in, but assistants (and parents) really need to understand this and how to be good listeners (for some reading, look to Val Williams’ conversational analyses between caregivers and non-verbal individuals). Think of the life-skills training in addition to the education that our children also deserve. This takes more time than the allotment prescribed during the Industrial Revolution. I mean, it’s time to move on.

Then there is the need to reconsider how we look at behaviour from the outside. This is a problematic approach because we cannot know how Adam feels on the inside, yet we have lots of autistic autobiography to help us. When we tried redirecting Adam with a behavioural approach, this enraged him – he smashed himself into the couch and crumpled the paper from his Zeotrope in his little fists and threw them to the ground. The basis of this was to get Adam to stop screaming, but it did not account for the fact that he perhaps could not stop. This is the same for Tourettes (which I think Adam “has”) in that if you call more attention to the action, it will increase it. Instead, deflecting to relaxing activities seems to help more in addition to the sensory (deep pressure) that Adam needs.

An and calming approach worked much better than a behavioural one – this is what has to be done before we can teach any lessons – social and academic. Social stories and cognitive behavioural training are now a part of Adam’s week in addition to us seeking more adventure for him – rock climbing, circus arts and swimming. For CBT, another boy character is inserted into social stories to take the attention away from Adam. This way, Adam can relate to the character without feeling targeted. I gleaned this from reading Donna Williams’ Exposure Anxiety, which makes a lot of sense where Adam is concerned.

I fully believe after 12 years of being with Adam that seeking cooperation through engagement is our obligation, not his because he is still learning. He is a child who wants to learn, but we can’t do that by mere compliance. He complies when he is respected and engaged and also knows the rules (teaching boundaries respectfully will be our new challenge). I’ve started teaching three key concepts in various formats and in daily life to Adam – cooperation, patience and gratitude. In teaching Adam these concepts and ways to enact them in daily life, I also have to do so towards him. I’ll let you know how it goes.

Puberty will be challenging for Adam and for me. I am protective mother noticing the need and beginnings of separation. On the one hand it seems that Adam needs his structure and certain environments especially when he is feeling uncertain. On the other hand, he is truly becoming a teenager who is showing more signs of frustration and wanting to expand his world (this is different than bolting or escape but could be sometimes related). These may always be competing impulses in him, I don’t know. All I can tell is that they both exist within him. How do I give Adam boundaries and his own need for control over his own life now and ensure his safety? I’ll keep you posted on how this goes too.

Back to School 2013

Filed Under (Acceptance, Adam, Communication, Identity, Joy, Love, school) by Estee on 03-09-2013

It was back-to-school day. Adam started his new inclusive school today. It was not unfamiliar; he had been there two years ago. He had a great day and was typing very well. Adam was happy when I picked him up and was apparently glad to be back with the big kids at lunch and recess. In the meantime, I’m up to planning the rest of his programs, and my own. I am due to defend my thesis this Thursday and if all goes well, will start my doctorate and teaching assignment next week.

As I opened Adam’s bag this evening I got a new kind of homework that I was most delighted to find – I was asked to tell the teacher about Adam. I was asked to write in a circle about what Adam likes to do as well as answer questions such as: Who is he? What does he mean to you? What are the things about him that I should know? I was just thinking again the other day how, just because are kids have this label we name autism, that our children inherit an identity that does not belong to them. I mean, how often are we asked to talk about our children in positive ways (for lack of a better word)? Aren’t we typically asked by therapists what our kids like for the sake of using them as reinforcement as opposed to knowing who our children are? And what about knowing our children as people first? In thinking about the year ahead, I’ve spent much time over the summer pondering all the things that Adam is, what he loves, what he is good at, and what he brings to his family and to the world. Then surprise! I got this “homework” in his backpack today. Needless to say, all that thinking about what Adam is, as opposed to what he isn’t, helped me to fill the circle quickly. I’m so glad someone else sees the value of this too.

The Autism “Spectrum,” Assessed Identity, and Supporting Access…some thoughts

Filed Under (Acceptance, Adam, Autism and Learning, Communication, Computing/iPad, Identity, Spectrumism) by Estee on 16-05-2013

This photo is of Adam with his Grandma.

I know I don’t write about Adam that much these days. I’m always caught in ethical considerations about his right to privacy and protection versus the benefits of sharing stories. I work a lot with autistic adults theses days as well (am always grateful to have them in our lives and realize how sharing of information and differences of viewpoints benefit us all), and I also work and play every day with Adam. I juggle between my studies, re-growing work with TAAP and as his mom – teaching him after school when I can. Single motherhood brings it’s own worries – am I giving him enough? What would happen if I get ill?, among many questions. I do the best I can and I have to accept my situation. As usual, I digress…

Adam is typing on his own now, is becoming a trampoline champion with an excellent coach, and has a friend. The challenge and sorrow, when I feel any, is the isolation by comparison to other children, or quite frankly, the concern I feel when people ask me questions that are proliferated by the media about how “functioning” Adam is. When people ask me about Adam’s functioning level, I get to ask in return why that matters to them – I think it’s important to ask others in order for them to think about it deeply. I then usually respond that I love Adam as he is, and go on about what great person he is. Functioning levels are arbitrary assessments made by subjective observation – by an individual who thinks they know something about autism, but in fact, just follow a set list of criteria that continues to change. Frankly, the most valued professional advice I would receive is the answer “I don’t know” and someone who considers Adam’s unique needs and strengths. Also, permit me to meander, it should never be an assumption that autistic people prefer to be alone. This is not fair – all autistic people are different and most express a profound loneliness. As for spectrums and functioning levels, this discursive dialogue must end if we truly value all autistic people.

In other words, there are no prognostications that are accurate. Ask any autistic adult and read through their psychometric assessments and old IEP’s and they’ll have plenty of comments – none of them positive. In fact, I am very concerned about the material reality these stacks of binders (recording bowel movements and the like) get absorbed by an autistic child regarding their identity and later, their self-narrative. I often think of taking all the binders I’ve kept over the years, papers, assessments and do something with them – no not burn them – but make an installation regarding this question: Shouldn’t we as parents be concerned about a forthcoming identity crisis as our children are told what they are by a mere label that describes virtually nothing about person-hood and individuality? If I could turn the clock back eleven years, what would I change?

I support Adam’s development and person-hood – his right to access and individuality. Further, and I have to keep saying this, it disappoints me when autistic children are not allowed to go to various programs with an aide worker. An aide worker enables many to contribute, work, participate, and feel a more a part of our community. While I cannot predict what level of assistance Adam might need when he gets older, for instance, this is besides the point – the issue is the right to access. Our autism committees and charities and governments must start considering these rights as opposed to simply believing that autism can be cured and kids can become normal with enough therapy. Instead, when we consider the value of people, we have more chances of seeking education after the age of 21, opportunities for vocational training, college, and university. More creative strategies for living situations can be considered such as co-living, assisted independent living (therefore interdependent living), micro-boards and aide workers and educators can also be treated with more respect as valuable assistants to autistic individuality and right to choose. Strategies for the latter entail visual supports, AAC, extended time, patience, teamwork.

Back to Adam…he is partially verbal and this is growing every day now as I watch him also grow taller. He is enabled more as he types a first word which seems to prompt the rest of his sentence. Some days he’s more chatty than others, which seems to be common for many partially verbal autistics. Through patience and repetition, Adam has begun to take care of himself. Adam can talk on the phone a little longer, dial his grandparents, get dressed, brush his teeth, and ask me where and what questions verbally, that is, on the more verbose days. I guess I’m saying this for all the years of misunderstandings by parents that autism acceptance means just letting a child sit around all day and do nothing. This to me is also an ableist concept which presumes that autistic people can’t do anything at all when the truth of the matter is that everyone has a different situation and we address each child uniquely and with respect.

I think many teachers and coaches have enjoyed their own teaching successes with him. I also think parents must work harder to readjust their expectations to support education and inclusion. Teachers cannot succeed if we have unreasonable expectations of normalcy and, as parents, we should be startled at this word as it discriminates our families. As we accept this we should also not accept the unfair exclusion and segregation of autistic children and the lack or regard for their education! In this, education will also have to adjust and I expect it will as computerized learning is becoming more popular – where children can be taught online and monitored and facilitated when needed. The potentials of the Internet and computers have not yet been fully tapped and could change the face of individualized education as well as citizenship. As commerce takes place online, we are also looking to the Internet for online voting – the last bastion, arguably, of citizenship. It was Singer (1999) who said “[t]he impact of the Internet on autistics may one day be compared to the spread of sign language among the deaf (1999:67). Alas, however, let’s not segregate autistic children into a room full of computers. We all need human interaction. Also we need to consider this by Alison Sheldon (2004):

“There is a small but growing body of work within disability studies that emphasizes technology’s ‘double-edged nature’ (Oliver, 1990) and stresses that it can be ‘both oppressive and emancipatory, depending on the social uses to which it is put’ (Gleeson, 1999:104).” (Sheldon, 2004: 157).

Sheldon suggests that some of the barriers to access include its cost. “We must not be distracted…into denying the socio-structural origins of the problem. Access to technology is not simply a technical issue with technical solutions. The inaccessibility of technology is just one more symptom of disabled people’s continuing oppression.” (157).

Also, to balance this drive towards access to technology, Sheldon states:

“…in the current political climate, the increased use of Internet technology as a means of disseminating information may have adverse effect on other means of information provision. The unconnected majority of disabled people may find that accessing information (and indeed other consumer goods) in traditional ways becomes even more problematic as these facilities become available online. Thus, the Internet is not a panacea that many suggest. There is still a need for appropriate and accessible information to be disseminated to disabled people in other ways, or the disabled community may simply become yet more polarized.” ( 157).

As I suggested when the iPad became popular for autistic children in schools, we cannot expect it to replace teachers, parents, the knowledge to teach autistic people how to communicate by AAC and/or supported typing. Technology should not become another means to segregate.

Finally, to end today’s ramble, it’s time for us to reconsider the spectrum concept. It’s based on a hierarchical system of who is better functioning which is discriminatory in so far as it implies whose life may be more valuable than others. It effects the way we educate, include or exclude, and keeps autistic people from obtaining fair treatment and equality of well-being. And, after all, none of us can predict the future and autistic people do not “fit” neatly into the high and low functioning paradigms.

References:

Sheldon, Alison.(2004). Changing Technology. Disability Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publishing.

Singer, J. (2003). Foreward: Travels in Parallel Space: an invitation, in Miller, J.K. (ed.) Women from Another Planet: Our Lives in the Universe of Autism. IN: Dancing Minds, pp. xi-xiii.

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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.