Filed Under (Behaviours, The Autism Genome Project) by Estee on 23-01-2015
Listen to this study on This American Life and consider the implication for how our thoughts and expectations can effect the lives of our children. Interesting implications and I expect many discussions among your friends about autism, expectations, education and access. I wonder if our thoughts were positive about the genome could have the same affect. It’s all about thoughts.
This might be worked on some more… I’m writing today and flipping through my binder of writing. I found this unedited poem as part of a poetic essay I was attempting last year. Please note I am not well-versed in the art of poetry, but enjoy the process of trying. I think it’s fine to share it as is. I might consider it for that horrid month of April and again for our Pride Parade in Toronto this year:
Pride has this mother
threaded by a label
and stitched with love
As Kanner did
on the great
He said they didn’t live before
as the “feeble-minded”
behind 19th century doors
for new definitions
to be borne.
This video by Alison Ludkin, among other pieces of artwork and writings, can be found on Art of Autism – a site bringing the work of artists labeled with autism online. I suppose I chose it for my blog as Adam takes the train everyday to school and I try to take in all the sounds and stimuli with him. I try to imagine. As for this site, I recommend supporting the artists.
The Autism Acceptance Project brought art by autistic artists in an online gallery back in 2005-2007, with exhibitions in Toronto and online participatory space. As our mandate always has been to ask autistic people first what kinds of supports they want and need, the organization has (and continues) to seek autistic-person guidance and governance. When the site was maliciously hacked about two years ago, we lost much data and records, some of which is now stored at Brock University Library Archives. I must admit that I really enjoyed those days of curating artwork and today, Adam’s poetry and other endeavours, and nourishing them as best I can, is keeping me busy.
I am so grateful for the work by autistic people. My background as a curator of art (my first profession prior to my disability studies work) started my journey in looking at disability differently and began the whole blogging process back in 2005. I suppose when looking at shiny new sites – much better constructed than our budget or ability could muster back in the old-internet-age of 2005 – I am thrilled to have the opportunity to view work by autistic people. This site has such a wide array. This is work we saw much too little of prior to the Internet so it would be an interesting topic for many of us to explore (and a paper about online spaces I am writing at the moment).
May we also spread encouragement and support directly to the artists when we think about creating websites. I believe that the artists, if they are not directly reimbursed because of budget constraints, should at least be directly credited for their work with a link back to their galleries or websites may enable a generation of income and accolades. Also, it would be wonderful to promote not an “awareness” of autism – we certainly have that awareness out there. However, it’s the kind of awareness that can be problematic. As Kassiane S. states: “Awareness is easy. Acceptance requires actual work.” Perhaps a site dedicated to autism acceptance is critical now.
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
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.
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.
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.
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.
A Disability Poem
By: Adam Wolfond
big stairs laugh at him..
Because hard to go up when you got just a wheelchair to get around in..
I think the long road will be hard for him to travel..
He feels like people dont understand him..
I understand him like gains to be made in our lives just want to be interesting and loved totally..
I could strive and make lives better
This poem was written by my 12 year-old non-speaking autistic son. He communicates on an iPad.
Today I received a call from the school (a good call) that Adam was upset. After given the chance to type about why he was upset, he was talking about the news and of justice. He is beginning to learn about Martin Luther King. He wrote at school:
“People keep talking shit about justice…laugh out loud in life there is no happy and free people.” He was asked if he saw this on the news: “Yes at home and on subway…Hang the reporters …on the news my feeling is that it only shows really one sided opinions…great people are ignored and also sad to hear about death…”
My first instinct as Adam’s mom was to help him understand bad news by thinking of how we all cope everyday. We hear of terrorism, killings in our own city, many injustices. It is hard to watch your own child be pained by it all. I told him about how I think we don’t understand joy unless we experience struggle and also that we cope everyday by thinking about the people we love and the things we love to do. It’s all I could come up with as he listened intently while noshing on rice snacks after school today. Then I commented on all that bad news we hear and rhetorically asked why that is. I would ask any other grade seven student the same question, so why not Adam? I commented that some people only watch the news when it’s bad news. Then I grabbed my copy of the Sunday New York Times and we looked for some good news stories. Dismayed that I could not find anything in the front section, I leaped to the arts section and we found a story about inspiration. I thought we could go with that. Adam leaned in and I started talking about how we need good news journalists. This is what he wrote and with his permission, he does want this published on my blog:
Then Proloquo (the program he uses to type) jammed so we moved to a notes section and he continued:
It’s hard to read from the screen shot so here it is again:
“It sells because people want to see bad things. I would love to have news that is good. A good news story would be about inspiration. I would write about my noteworthy experiences as my autism is my struggle. My very hard time with speaking is my struggle. I want the world inside my open mind to understand my intelligence and I most happy when I can type. I learned to type by patient mommy and I have an about a boy who has worked hard. I think that I am a good example for parents to know that open minds are required for their kids to learn how to type. I want people to read this.”
Adam, the good news journalist, wants you to read… and to hear.