Thesis, Birds and Naoki Higashida

Filed Under (Acceptance, Book Reviews, Inspiration) by Estee on 07-09-2013

I successfully defended my thesis on the film Wretches & Jabberers this week, a day before a bird-deluge on Adam. (I’ll post this thesis to my website later this week). It is my hope that we can all promote this self-advocacy film to be the new film people talk about autism (rather than Rain Main). The day before my defense, Adam got bird-pooped on by a rather big bird. He was not happy about it, but I kept explaining that despite it being messy and a damper on his recess time, it meant he was going to have lots of good luck! It seemed to work; Adam smiled in the car all the way home as I heralded my enthusiasm about bird-poop-fortune.

But today I really want to point to something I am very happy about: a review of Naoki Higashida’s book (he is the film subject in Wretches & Jabberers who lives in Japan) in our very own Globe & Mail today – arts section, page R.4. It would be wonderful to keep talking about this and the film and the contributions that non-verbal autistic self-advocates make to our understanding about autism. I hope this review will also lead people to watch the film.

Autism History and Identity and Why We Need It

Filed Under (Autism History, Book Reviews) by Estee on 06-09-2012

I’m back at York U and have taken it upon myself to persue my M.A. in Critical Disability Studies and focusing on autism in every context I have time for. Outside of general readings, I noticed two books I’ve pre-ordered and eagerly await to devour:

Far From The Tree: Parents, Children & The Search for Identity by Andrew Solomon and Autism: A Social and Medical History by Mitzi Waltz.

“Disabilty” is a relatively new word in our language set to describe the social barriers that render some people unable to participate. It isn’t a word that we will find in historical records about disability. Rather, we find words like “lunatic, idiot, leper, cripple,” to name a few historical references to disability. While the history of disability is a burgeoning subject now, my generation never studied it in school. Some of us may not have even studied civil rights history. While we can locate histories in texts, records, art, and now through oral histories, we are just beginning to recognize that uncovering history is a very important aspect to identity. All of our histories are important and so many of them go unrecognized and untold. I remember learning British History in elementary school, and feeling valueless because my history was ignored, not validated, and considered not worthy of digging into. So many immigrants or different ethnicities feel the same way, although we have growing bodies of history that are now being taught in schools.

While autism memoirs are a way of telling our history now, we can do more to reach back and find autism in history. Uta Frith and Harlan Lane are two authors that come to mind who have written about specific autistic individuals in history.

Autism in history is a subject that requires much more attention. I’m hoping that the simple binary of “medical versus social model” of autism history will be avoided in the books about to be released. “Rethinking this polarity is what historical research and methodologies has to offer disability studies.” (Anderson and Arden Coyne).

In terms of identity, autistic identity or the identity of families with an autistic member, it is important to avoid the stereotypes of this binary that we encounter, especially in autism “advocacy,” although it would be an important a study unto itself of how we view autism today.

Our identities are complex, located within race, gender, income, nationality, culture, and so much more. We need to challenge ourselves to move away from the idea that all experiences of people with disablities, or their family members, are “conflated.” (Anderson & Coyne). History must also be viewed through the prevalent views of the time period, and we cannot impose of modern views upon it, for our interrpretations would be skewed. It’s more enlightening to look at history and compare it to our views today and in how we might improve as a society.

I hope for more literature on autism and history. I’m not of the belief that we all need to be autistic to write histories about autism but the practice of locating ourselves in any research must be something we undertake more rigorously, upfront, by stating our own views, considering our bias, and offering our biographies. I’d like to see this not only in social research, but also in medical research. We need to promote further studies to help define autistic identity. If we do it carefully and ethically, we could assisst with the rights of the autistic person in our society.

Reference:

Julie Anderson and Ana Arden Coyne, “Enabling The Past: New Perspectives in the History of Disability,” European Review of History 14:4 (December, 2007), pp. 447-57.

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.

Towards a New Autism Research

Filed Under (Ableism, Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism and The Media, Autistic Self Advocacy, Book Reviews, Communication, Computing/iPad, Critical Disability Studies, Development, Discrimination, Family, Movement Disturbance, Research, school, Sensory Differences, Transitions) by Estee on 06-07-2012

It doesn’t matter who you are, or how high you rise. One day you will get the call. The question is, how will you respond?” — African American U, Senior Administrator

Adam left for camp this morning. Last week, he did well at his piano recital. His lessons have been adapted for him — colour coding left and right hands, bass and treble clef lines, to give a sense of the many adaptations we’ve learned. Not only have we adapted lessons for him so that he may learn in “typical” ways, but I also asked the teacher to let him explore the piano on his own, as well as have her play for him. I became a musician when I was very young, and a neighbour let me bang away at the keys doing whatever I wanted.

I was proud that Adam was able to attend and play well at his recital. I asked that he make his little bow, and sure, everyone thought that was sweet. Afterwards, as there was another special needs person as part of the concert, I was noticing faces as he sang — his articulation was challenged. I didn’t see gleaming “ain’t that sweet” smiles. I saw strained faces. Not until the children who were fluent with well-pitched voices were singing did the “ain’t that adorable” look beam as high as the church rafters. That effected me a lot, and I pay attention to these subtleties every day. I don’t think people realize the subversive effects of a mere countenance. I, at least, read faces well. Adam seems to pick up on vibes, but that’s my assumption after knowing him for so long.

Last week, Adam was more verbal — asking me “what are you doing?” when I was at work at my desk and he wanted to play. In addition to a successful recital and these questions, we had a “good” week. Having Adam ask me a rare question is exciting. I am happy when he gets more verbal, types on his iPad, and now, starts to ask me questions. When the camp bus came for a visit last week and Adam got upset afterwards, he typed (independently), “why is bus going?” It shows that his world is expanding by his growing ability to communicate. I find myself relieved because I think it will make his life more fulfilling, if not easier in a world that favours the able-bodied and the fluently verbal.

Two days after his verbal “spike,” however, something that comes and goes but improves steadily all the time (akin to a graph with a steady climb overall, but with monthly plateaus and slight dips), and also possibly correlating to the end of school, the transition to camp, a possible cold or allergies (get the picture?), Adam began to twitch more and he lost his ability to talk for a couple of days. He is better at being able to type a few words when he is under stress. He couldn’t do that at all before.

While I still worry, mostly if I see him uncomfortable when it happens, I’m getting better at waiting him out. Whatever is effecting him needs to be processed by him in his own way. Within a couple of days, although the twitching slowly abated. He started to smile and become more verbal after a couple of days of the most intense part of it. I really do not understand what is happening to him neurologically and neither does anyone else. Only some autistic people can give me a sense of it. There is no guru or expert or scientist who has truly “discovered” what causes Adam to tic and twitch the way he does. We know of similarities in other disabilities. Adam was tested for seizures and at least on the day he was tested, it showed negative. These are but some of the things we don’t fully understand about Adam and what we refer to as his autism.

As his mother, I’m well aware of my bias, in spite of my enduring “acceptance” of him. Bias and ideas are so deep-rooted in us that acceptance is something we have to work on every day. (Boy, would I love to read that caveat in someone’s research paper on autism). As Adam’s mother, I realize that although I love him dearly and accept him as he is, it is still difficult to resist the temptation to praise Adam’s “normal” feats and accomplishments only, and not recognize his autistic ones. Like all of us, we are under such a strong ableist or “normalist” influence that we don’t praise, cite, recognize autistic-ness as often as we need to.

We need so much more of a new kind of autism research — one that captures autistic accomplishment without sensationalizing autism. Too often any achievement by an autistic individual gets refered to as “genius.” While in some cases in may be extraordinary, we do this because we are still not looking at autism as a whole in the way we should look at all of humanity. We fracture autism into little bits and pieces as much as we end up doing people.

When I attended Autreat too long ago now (I am due for a revisit), I purchased fifteen years of workshop notes and presentations. I remember when I attended being giddy that there were workshops for autistic kids on how to make their own stim toys. Autreat, founded by Jim Sinclair, who is also autistic, is run by and for autistic people.

For months now since he started in an autism school especiallly, despite my praise of Adam for his feats, I still wonder how I can nurture his autistic-self. So I went downstairs and dug the old material up. Here’s a clue of what I wish to study more about:

How to Play With Dolls: For Kids and Adults Jim Sinclair, disability educator and consultant, coordinator of Autism Network International

For purposes of this workshop, a “doll” may be any inanimate object that we play with by imagining it to have aspects of personhood. This includes the traditional toy-human type of doll, as well as toy animals, and any other toys or objects that our imaginations transform into living entities. In this intergenerational workshop, we will share and explore different ways that autistic people can use doll play for fun and for learning, and ways that parents, educators, and therapists can use doll play to help autistic people in developing skills and understanding…”

Music: What Is It, What Does It Mean To Us, and How Can We Use It?
Katja Gottschewski, musician and music therapist, Bodo, Norway

In this workshop, we will explore different aspects of music. We will look at differences and similarities in how we as individuals or as AC’s and NT’s [autistics and neurotypicals] define and experience music. It will be discussed how we can communicate through music. How is music different than language? Can music be a bridge between AC’s and NT’s?

Understanding How Plants Can Facilitate Connection in Autistic Children and Adults
George Salamunec, HTR, COTA/L, Certified Master Gardener, Susan Golubock, M.Ed., OTR/L
Autreat 2004

Working with, and understanding about, plants can be an effective tool for developing the senses, reducing stress, and learning to make new connections in autistic children and adults. Matching plants to one’s personality and needs is an important first step. Plants provide opportunities for autistic children to explore life, nurturing, modulation, non aggressive options and choices for dealing with natural adversities, and why learning about other life (and people) outside of ourselves is so important…

Making Employment Fit: Accommodations and Other Dirty Words
Joel Smith, Autreat 2004

Employment is difficult for many autistic people. We are square pegs who dont fit nicely into round holes. Rather than forcing the autistic into a job, would it be possible to change the job to better fit the autistic? In this presentation, ideas and real-life examples are presented of how jobs can be modified to best accommodate autistic sensitivities. We will also discuss how to modify your job without alientating your boss and co-workers.

That was from Autreat 2000 and 2004. Twelve years later, I am concerned (especially after attending IMFAR), how we hardly research autistic ways of being. We usually do it framed in a bias — comparative research against the “normal,” population.

We really don’t value what makes up the true and different, “not less,” accomplishments of the autistic person. I’ve read blogs where “experts” bluntly claim that there is “no value” in lining objects up. I’m not going to target the scientist specifically here, but I wonder how many readers of this may have at one time or another thought the same thing? Other than people like Temple Grandin, how can we all study the value of object-organization and how that is transferable into learning at school and later, in the workplace? I don’t think this is a trivial skill that needs to be solely relegated to the OCD side of the human column.

Just because we don’t see the value doesn’t mean it ain’t there. We don’t understand. We are viewing under a comparative, normal versus abnormal one, and that’s so limiting. While I try to make the “least dangerous assumption,” a term first coined by Dr. Anne Donnellan, I realize that I must work to continue to see Adam for who he is in all contexts. It’s a absolute daily task and obligation of mine as his parent. I wake up every morning thinking about this, more than I pander to alarmism. In fact, next time an autism commercial brings you to tears, please ask what buttons are being pressed and why, and if there’s a better way to achieve a quality of life for us all?

I’m also reading Anne Donnellan and Martha Leary’s newly released book Autism: Sensory-Movement Difference and Diversity and I would highly recommend it. I liked especially this example:

According to Oliver Sack’s book, Seeing Voices, in learning sign in infancy he will develop brain patterns remarkably different from his ‘normal’ peers. And he will continue to develop in different ways, but we can in no way call those differences ‘deficiencies.’ He will develop different social and cultural skills. If given the most standardized IQ tests, even with a signing interpreter, he will perform differently, and possibly less well, than his speaking/hearing peers. On tests that tap the developmental experiences of deaf people he would probably score far higher than his hearing friends. Yet it is no surprise but nonetheless sad to learn that for decades deaf children were routinely diagnosed as mentally retarded. Still today, they are often considered to have diminished capacity relative to their hearing peers, even when we clearly know that they can flourish if given the appropriate education and experiences. (p. 33).

Consider that, for the deaf which we think we’ve come, arguably, to understand and accept, of how far behind we are in autism to apply this level of consideration. Think how far behind! Thankfully, a small pool (and I hope a growing one) of researchers are taking up this call. In Steven Kapp’s (et al) paper Deficit, Difference of Both? Autism and Neurodiversity, there is also a call to discover the state of autism acceptance and “potential areas of common ground in research and practice regarding [how] autism [is] discussed.”

Scientists, working with the community, can help stakeholders with competing agendas make informed choices between rights, responsibilities, and needs at personal, social, and political levels by affirming that diverse societies respect multiple perspectives.

I’d like to see us all work towards the question of how to nurture autistic strengths and learning and balancing the real need to cope in this world as a minority, as well as continuing to value autistic contribution and being in society.

A Whole Better World
Autreat, May 2000,
Clay Adams

I can imagine a whole better world,
Where people don’t laugh at each other’s pain
A world where the sun shines on every one
And one’s well-being is everyone’s gain

Must we, in fact, feed off each other?
Fool the unwary, to sell our wares?

Book Review: Challenging The Myths Of Autism by Jonathan Alderson

Filed Under (Book Reviews, Critical Disability Studies) by Estee on 07-12-2011

Review: Challenging The Myths of Autism: Unlock New Possibilities and Hope
Written by: Jonathan Adlerson
HarperCollins Publishing, 2011.
257 pages

I was more than intrigued by the title of Jonathan Alderson’s new book: Challenging the Myths of Autism: Unlock New Possibilities and Hope. In the last ten years, there have been a lot of autism books and memoirs released. My favorites have been ones written by autistic people. There are other favorites, Uta Frith, for example, Darold Treffert, who talk about autistic ability and autistic individuals in history. More recently books challenging theories about autism are receiving critical acclaim. Challenging ideas about autism indicates a massive change in the way we think about mental health and neurological difference. For my autistic son, the change doesn’t come fast enough, which is why we need more authors like Alderson.

Theories and anecdotal stories about people with disabilities, by the people who love them, have resulted in a move towards studying the value of cognitive difference. In the news recently, FRMI’s show that some people in a “vegetative state” have the same brain activity as typically functioning people when asked the same questions.  The science validates those parents who have believed for years (and criticized for those beliefs) that their children understood what was going on around them. Now fact rather than myth, the way we have treated these people has become society’s ethical question. The spotlight is turning on us.

By stating that there are autism myths, Alderson suggests that other facts exist – relative or absolute. There is not a lot of science in autism. Most of the science that exists is directed towards causation and treatment. New research is now pointing to autistic ability, not simply to cite the value to autistic people to our society, but also to derive a better education that is geared towards autistic intelligence, which society has a difficult time seeing beyond what appears to be severe disability and functioning. While Alderson is a clinician-first, and his observations are largely anecdotal, he cites this science and other examples. Mounting so many of these examples, which are supported by parents and autistic people, his points about autistic humanity and value become impossible to ignore. The autism myths Alderson challenges are those about affection (or the supposed lack thereof), rituals, socialization, scientific “evidence,” I.Q., the five-year-window, and imagination in people with autism.

Parents and autistic individuals experience lack of services and quality education because of misunderstanding and a perpetuation of myths which have misguided the treatment, therapy, and education of autistic people. Most of us are much too familiar with our daily lives punctuated by therapists and teachers only citing the deficits in order to “normalize” instead of teaching to autistic strengths. Autistic contributions and strengths, to date, have not been heralded enough because the disability can be very challenging. Many cannot see beyond it.

Alderson completed his Masters of Education at Harvard University and originally trained with the Son Rise Program in Massachusetts, although he is not promoting the Son Rise program or any other program in this book. In fact, he points towards a more well-rounded educational plan that accommodates the autistic person.

He dedicated twenty years and practice to working with hundreds of families. “The more children I met, the more diversity I saw,” he says in his book. “I think we sometimes forget that we are talking about real people, a population with a very wide range of strengths and challenges and personalities. How we talk about people with autism and how we characterize them impacts how we treat them.”

These beliefs, he states, like the myth that autistic children can’t share affection, led therapists to use holding therapies “where children are held tightly, often against their will, for hours at a time…. “Or the belief that the majority of autistic children are mentally retarded led to thousands being placed in mental institutions and pushed aside in special education classrooms.” The myths, he argues, “influence research, policy, treatment and our personal relations with people with autism, and they need to be challenged.” “Actively look for intelligence in the autistic population by removing barriers. Focus your mind and your eyes on ability,” he writes.

Maybe change is hard, and the reward too small for our educators, but I don’t think it’s a point we should give up on. My son Adam was diagnosed with autism at 18 months of age. I wish that books like these could have existed ten years ago. It would have been a much more empowering foray into the world of autism. I was one of those parents who began blogging in 2005 because from the get-go, I had difficulty related to what the “experts” were telling me regarding my son’s “lack,” which Alderson addresses in his book. They did not address the joy I felt when I was with him, or the happiness and tenderness he also exuded.

Parents need to hear what their children are capable of because there is far too much time and effort being poured into being told how deficient our children are. Millions of dollars get wasted into changing our children’s inherent nature instead of nurturing what is already there. All this money, and we ironically also have few places where our children can get an education. When children don’t become “normal,” parents can get depressed and therapists and teachers give up. Alderson quotes Carly, an autistic girl living in Toronto, who can’t speak but who types independently. Carly told a television audience, “Never give up on the children [you] work with.”

Alderson challenges the myths. Now we all need to work on redefining autism, and how an autistic person can be taught over the lifespan. I believe strongly that learning is a life-long endeavour. Our beliefs even about education ending at age eighteen or after university had more to do with getting people into the workforce in a era long past. With autistic people as well as all of society today, we are constantly learning and working at the same time. We need more talk about how to redefine the present and future for autistic people to contribute to society as they are. Also, we are just beginning to acknowledge the contributions made to society by the severely disabled, dyslexic and other disability communities. I believe the same can happen with our autistic one.

This book is an empowering tool for parents, teachers and clinicians. It is readable and accessible and may open a door that educators and others may open to provide better and more opportunities for people with autism. Hopefully we will continue our quest to understand the many attributes of autism rather than making a judgment that a difference in processing is a wrong way to be human. As myths are challenged and facts are sought through science, we don’t have to wait in order to treat people fairly.

Challenging ideas — myths  — is one of the most important endeavours of mankind. May we continue the dialogue for the advancement and successful living of all autistic individuals.

The story of Hercules (Heracles) grappling with the giant, is a case in point. Every time Hercules hurled Antaeus to the ground, he became stronger. Clearly this is what we might politely call a tall story. But maybe there is scientific logic behind it. What if Antaeus had some sort of magnet (if you don’t like the idea of a magnet, you can invent your own scenario) that made him stronger each time he hit the earth and weaker when held away from his power source? Hercules defeated another giant, Alcyoneus, only by pulling him far from his origin. The magnetic force of the earth was overcome in these examples by pulling far enough in any direction.

(N.S. Gill, Myth vs. Science, About.com)

Is Having A Disorder The New Normal?

Filed Under (Acceptance, Activism, Advocacy, autism, Autism Spectrum and Diagnosis, Book Reviews, Critical Disability Studies, Inclusion) by Estee on 28-07-2010

Using the title from Kat Kelland’s article in today’s Globe and Mail, she suggests that experts are worried that, with the extended array of defined disorders in the soon-to-be-released DSM V (Diagnostic and Statistical Manual), no normal person will continue to exist.

“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

Elizabeth Gilbert’s, Committed: A Skeptic Makes Peace With Marriage

Filed Under (Book Reviews, To Get To The Other Side) by Estee on 31-01-2010

Review of Committed: A Skeptic Makes Peace with Marriage, Elizabeth Gilbert
Reviewed by: Estée Klar

I’m a separated single mother. Last night, having dinner à la Sex in the City with my three long-time girlfriends, I realized that I am the only truly single lady at the table. My girlfriends may have had the recipe for relationship success right all along — they never, ever got married. They may be single, but they are all in long-term committed relationships.

This is not to say that I’m against marriage now just because I am separated, but since I feel I have not yet been successful, and in fact — let me borrow Gilbert’s own words —  “gutted” by the entire process, her new book may have come to me in the nick of time. Perhaps not just for me. Judging by the hot topics of discussion out there — like “All Kinds of Families” upcoming on television with Rosie O’Donnell,and the hit HBO series, Big Love, and 41waKzNI4wL._SL500_AA240_Desperate Housewives, well, Gilbert definitely knows what is on our minds. So long Ozzie and Harriett, Little House on the Prairie and Leave it to Beaver; these times…they have changed!

Gilbert acknowledges that she is no scholar of Western marriage, but her research makes us rethink our beliefs. Woven in between her own personal journey — falling in love with Felipe at the end of her Eat Pray Love journey, living with him on his three-month visas into the U.S. and vowing never to marry each other —  we learn a little bit more about her and how and why we think such things about finding soul-mates and marriage partners. “Sentenced to marriage,” because her partner Felipe will finally be deported out of the United States if they do not marry (no more three-month visas allowed), Gilbert decides to research almost out of terror. She has already been divorced. She has no children. She writes, she travels. She seems to covet her freedoms. But she has also fallen deeply in love with Felipe.

So she embarks on her next quest which manifests in this newly released book. Expecting the world from our partners to “make us eternally happy,” she cites an important, maybe crippling, contemporary theme — that the only quest worthy in life is to find happiness. “It’s the emblem of our times,” she says. “I have been allowed to expect great things in life. I have been permitted to expect far more out of the experience of love and living than most other women in history were ever permitted to ask. When it comes to questions of intimacy, I want many things from my man, and I want them all simultaneously….We Americans often say that marriage is ‘hard work…’ but how does marriage become hard work? Here’s how: Marriage becomes hard work once you have poured the entirety of your life’s expectations for happiness into the hands of one mere person. Keeping that going is hard work.” (p.48).

Of course, Gilbert can’t be excluding the same expectations of men who stake their happiness on a woman. Honestly, if I were to wager an un-researched guess, men have more difficulty in our culture being without a woman than women do without a man. If it’s a popular topic of discussion of our times, it does not belong exclusively to women-kind. But she does note that her father seemed to have fewer expectations of his 1950’s marriage than her mother: “…while it’s true that my mother has given up more of her personal ambitions in marriage than my father ever did, she demands far more out of marriage than he ever will. He is far more accepting of her than she is of him.” (p.197). So while Gilbert seems to identify in part the “shackles” that women find themselves in when they enter marriage, she also acknowledges that it can also be a repressive tool against men. “It’s an ancient truism across countless different cultures that there is no better accountability-forging tool for an irresponsible young man than a good, solid wife.” (p.198.) She cites Robert Frost who says, “in traditional societies single young men have a global reputation for squandering their money on whores and drinking and games and laziness: They contribute nothing.” (p. 198). But ask a thirty-something year-old single man, and I’m not so sure he would or wouldn’t agree. As woman have changed, I am hopeful that, since Robert Frost’s time at least, men have too.

Among the Hmong people she sets out to interview, where marriages are arranged, the women she attempts to probe about love don’t seem to have any expectations of their men. It is set up more for civil function and child-bearing, and the woman remain with the women during their days, and the men — well they are off doing God knows what. When Gilbert asks the Hmong women about how they felt about the subject of marriage, she was greeted with laughter and confusion. Of the Hmong grandmother she said, “Neither the grandmother of any other women in that room was placing her marriage at the center of her emotional biography in any way that was remotely familiar to me. In the modern Western world, where I come from, the person whom you choose to marry is perhaps the single most vivid representation of your own personality. Your spouse becomes the most gleaming possible mirror through which your emotional individualism is reflected back to the world.” (p.35). In Canada, where the person we link arms with is an important choice that reflects who we “are,” whether I like the idea or not, I would have to agree.

Gilbert’s chapters are separated to many aspects of marriage: Marriage and Surprises; Marriage and Expectation; Marriage and History; Marriage and Infatuation; Marriage and Women; Marriage and Autonomy; Marriage and Subversion and finally Marriage and Ceremony where she ultimately makes peace with her “life sentence;” albeit with a lot of soul searching and research! It seems to me that she finds her success in being “separate” while also devoted to and a part of Felipe. It makes me realize how utterly lucky I am to have time to myself, to be alone at this point in my life before launching into something too fast and too soon. Maybe I can call it my Eat Pray Love kind of year — the eating and praying part for sure and the love I am gaining for myself as well as a recognition of an enduring love for my son. Maybe we all need at least one of those years in our lifetimes. It seems to be our fear of being alone and that stigma prompting the fear that may be the saboteur of a peaceful path to coexistence.

That stigma of being single looms. Just a quick look at the amount of on and offline dating services that exist out there, and we can see it. We are yearning for connection — looking for that lost half of ourselves. It’s not unfamiliar that concept — our “other half,” our “soul mate.” But is there such a thing? With Hollywood romance pounding the message into our brains that there must be one soul mate out there for each of us, we’ve certainly come to believe it, and all things Hollywood must be rigorously questioned.  Yet instead we go out into the world and look for our mates as if it is our life quest. Gilbert says “our choice-rich lives have the potential to breed their own brand of trouble.” (p.45). Apparently, as soon as we abandoned arranged marriages and began to choose for ourselves, divorce rates sky-rocketed. As I read her book thinking of our freedom to create different “kinds of families” that we either inherit by default because of circumstances, or choose, I consider that the reader will be left with the question: so which is better; to be able to be free to choose, to remain single or to go back to arranged marriages? Gilbert would opt for freedom, but not of the escapist kind.

When women began to have equal rights and opportunities, they no longer had to remain in bad marriages. Then came the myriad of choices, for better or for worse. While  Western marriage is comforting in the sense that it eliminates all choice, it has, as I’ve hoped to illustrate via Gilbert’s book, its own set of issues. Religion imposes a civil and “moral order” (religion assumes we are sheep that need guiding — another power schematic) — a role that today our lawyers deal with when we get divorced: how property and children are divided. After all, the State doesn’t care about our broken hearts. Gilbert discusses how women gave up everything to be in marriage in history – and let’s face it, to a large extent still do in modern times. In Europe’s history, cites Gilbert, “the legal notion of coverture — that is, the belief that a woman’s individual civil existence is erased the moment she marries…a wife effectively becomes ‘covered’ by her husband and no longer has any legal rights of her own, nor can she hold any personal property…Coverture was a French legal notion that spread to England as late as the nineteenth century. British judge Lord William Blackstone was still defending the essence of coverture in his courtroom, insisting that married women did not really exist as a legal entity. ‘The very being of the woman,’ he wrote, ‘is suspended during marriage.'” (pp.65-66). Woman eradicated as humans? This is not something I enjoy reading about, but I believe it  still exists in the deepest caverns of our collective minds. It plays out in marriages, in court rooms and infects the behaviour of many men and woman today — that our worth is hinged on marriage and men alone.

Just going out with many women, and seeing more middle aged women going out on the town with each other, I’m not altogether happy with what I see. Not only do women just want to go out — and now they can without the man which is of course, great and something we now take for granted — many of us womankind are still fiercely hunting. “MILFS,” (a sexist, unfortunate term meaning “Mothers I’d Like to _ _ _ _”) we in a certain age-group have now earned such derogatory terms — “Cougar” being another one of them. You can see it in the eyes — checking out the men who walk into the room, trying to look coy with that red-coloured martini in their hands (wait..I like red-coloured martinis), probably hoping with bated breath that some guy will approach her. While many women might say they have earned the right to employ on the goose what was done to the gander, I have to wonder if women are out really enjoying themselves, or if they are seriously hunting for a man for the sake of increasing her self-worth. I’m not suggesting that woman are solely to blame here, as She has been the object of sexual oppression for generations. Yet why perpetuate the cycle?

Without the pressure of man-hunting, the best possible relationship and the ones I really value are those of my girlfriends — married, unmarried, gay, and yes, even yearning. None of us are alone with the very same questions Gilbert raises — “sometimes life is too hard to be alone, and sometimes life is too good to be alone.” (p.81). Doesn’t that just say it all? Now single, I am even aware I may now be a threat, possibly, to some of my married friends. It even shocks me to encounter married women who think it is so wonderful to be single, so easy — as if I can party all night long. It’s all very ironic because none of it is easy. I may represent what perhaps some married women fear they may become and representing that comes with a price that has saddened me to pay. A single gal can’t always win with the married type. It seems married or not, we all want to believe the grass is either greener on the other side, or that it’s as scary as hell. And believe me, it really is hard the first year of transition from married to single life! Don’t let my going on and on about being single fool you for a moment. I cried for six months straight!! Nothing can spare us from the heartbreak following the break-up or a loss of a long-term partnership or marriage.

What I starkly realized whilst becoming single (it’s a process), is the stigma — that I am less valuable if I am not attached to a man (one of woman’s greatest fears). I have also learned that this idea is farthest from the truth. As I grow and spend about as much time thinking about this topic as Gilbert has, being alone for a long stretch in one’s life without jumping into other people’s beds in order to escape loneliness is probably the most important thing we can do at least once in our lifetimes. And we all will — our spouses will die, our partnerships will break up. We simply have to learn to live well with and happily with ourselves. As a single person and a person who may enter any future relationship, it is most important to learn to value oneself first in order to be valued. One way to value oneself is to spend time alone…and not fear it. Elizabeth Gilbert protects her freedom, it seems for similar reasons. Like me, she enjoys traveling on her own. Like most women today, we try to find that safe place where we can have a partnership while also maintaining our need to pursue our own dreams. Ironically, even with all our hard-earned freedoms, it still can seem like an extreme sport.

Gilbert can get us really thinking with the amount of thought she and Felipe pour into their oncoming nuptials. For me the finest chapter was on Marriage and Infatuation. “History teaches us that just about anybody is capable of just about anything when it comes to the realm of love and desire.” She puts new words to the harsher adage “all’s fair in love and war.” It seems to me Gilbert, despite all the research, came up with the answer mid-way through her book about what makes partnerships last or not, and as I read this I considered by parent’s marriage of forty-six years. I witnessed them building their marriage like maintaining a beloved house. Walls had to be repainted, dying trees cut down and replanted, and some rooms eventually completely renovated. It was constant work and in between they lived out their frustrations and their joys. They are products of this historic belief system as much as my generation is, and future generations will be. Something in them and maybe even about them, I don’t know — they just stuck it out. Who knows what those factors were as they traversed life’s trials that bonded them together or nearly tore them apart. These are the intimacies I will never know. But, it does make me realize that to be in a partnership is to enter a contract that is tacitly renewed every single day. And yes, maybe that is supposed to be at times, “hard work.” Expectations or no expectations, it just can’t always be easy.

Gilbert uses the work of Shirley P. Glass, a psychologist “who spent much of her career studying marital infidelity…[whose] question was ‘How did it happen?’” So as I read the following paragraphs, I thought of the “house” with the strong foundation my parents built:

“The answer, as Dr. Glass explained, is that nothing is wrong with a married person launching a friendship outside matrimony – so long as the ‘walls and windows’ of the relationship remain in the correct places. It was Glass’s theory that every healthy marriage is composed of walls and windows. The windows are the aspects of your relationship that are open to the world – that is, the necessary gaps through which you interact with family and friends; the walls are the barrier of trust behind which you guard the most intimate secrets of your marriage.

What often happens, though, during so-called harmless friendships, is that you begin sharing intimacies with your new friend that belong hidden within your marriage. You reveal secrets about yourself – your deepest yearnings and frustrations – and it feels good to be so exposed. You throw open a window where there really ought to be a solid, weight-bearing wall, and soon you find yourself spilling your secret heart with this new person. Not wanting your spouse to feel jealous, you keep the details of your new friendship hidden. In so doing, you have now created a problem: You have just built a wall between you and your spouse where there really ought to be free circulation of air and light. The entire architecture of your matrimonial intimacy has therefore been rearranged. Every old wall is now a giant picture window; every old window is now boarded up like a crack house. You have just established the perfect blueprint for infidelity without even noticing.

So be the time your new friend comes into your office one day in tears over some piece of bad news, you wrap your arms around each other (only meaning to be comforting!) and then your lips brush and you realize in a dizzying rush that you love this person—that you have always loved this person! – it’s too late. Because now the fuse has been lit. And you really run the risk of someday (probably very soon) standing amid the wreckage of your life, facing a betrayed and shattered spouse (whom you still care about immensely, by the way), trying to explain through your ragged sobs how you never meant to hurt anybody, and how you never saw it coming.

And it’s true. You didn’t see it coming. But you did build it, and you could have stopped it if you’d acted faster. The moment you found yourself sharing secrets with a new friend that really ought to have belonged to your spouse, there was, according to Dr. Glass, a much smarter and more honest path to be taken. Her suggestion would be that you come home and tell your husband or your wife about it. The script goes along these lines: ‘I have something worrying to share with you…” pp.109-110.

While this piece of information hit me like a brick from that shattered house on my head and comes in the middle of her book, the rest of her book is worth reading too. I thoroughly enjoyed (obviously) reading about wo/man’s journey with marriage and where our beliefs may have derived. Most of us, even if we are good at being single, want friends and partners in life. We are, I believe, built to share. While “love based unions make for fragile tethers…maybe divorce is the tax we collectively pay as a culture for daring to believe in love.” (p. 83). I have learned while we need to have choice and freedoms, with them come many responsibilities — for nourishing ourselves and others and treating each other with respect and kindness. And this also grows and changes, like the institution of marriage in our culture, with that tacit contract. Maybe the contract, like people, get better with age. Maybe we come to understand the fragility. Maybe some of us learn, in this age of free expression and openness, that there are some things in life that should be left between two people. Gilbert certainly reminds us of the nature and importance of privacy and the need for a couple to really discuss and think about things, instead of expecting them.

Gilbert, after soul-searching this serious marriage business, finally marries Felipe in the house she buys in New Jersey (which ironically happens to be a converted church) when Felipe’s visa is finally approved. As they utter their vows, a dog suddenly lies auspiciously between them (which just happens to symbolize fidelity). I envision all the people out there writing their long list of pros and cons about relationships. I might be one of them one day. Yet very much like Elizabeth, I still believe in love.

I do, I do, I DO!

Do You See?

Filed Under (Book Reviews, Critical Disability Studies, Writing) by Estee on 29-12-2009

“You didn’t see me.” That must be the most popular line of relationship distress we’ve all ever heard and the reason for much heartache. With those who are closest to us, we yearn to be seen meaning, we want to be seen for who we really are — all that vulnerable, squishy stuff inside of us that we want others to take in their arms and hold gently.

What does it mean to “be seen?” I mean, out here in Miami there is no lack of men and woman stripping nude, or nearly nude, wanting to be seen. Hair coiffed just so, a pair of trendy sun glasses and a spray-on tan, and off they go into the public to show off with their heads held just so —  pretending as if they are not aware that others are staring. These people may want to be seen all right, but they want us to pay attention to what they want us to see. It is a far cry from being seen.

51aLK0mgNqL._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA240_SH20_OU01_If you think this post is about relationships it certainly could be. This is the meaty stuff of what makes or breaks many of them and why life is so hard sometimes. In his book Double Take: A Memoir, Kevin Michael Connolly travels to more than seventeen countries and captured 33,000 photographs along the way about the way people see him. Born without legs, “being seen” takes on a whole new meaning.

The photos in his book titled The Rolling Exhibition (named after his rolling around on a skateboard: “This Is A Legless Guy’s Skateboard. Please Please, Don’t Steal” he writes upon it), have been featured at museums and galleries around the world. They are taken from his perspective, low to the ground, (he is lying on his back when he takes some of them) with people staring down at him, which of course has a pent-up meaning in itself when talking about disability and the way people stare. They are passer’s by, whisking past him and he has caught their fleeting yet loaded glances. How could one describe them? Curiousity? Fear? What does it mean to be a subject of a stare when you have not intentionally invited it, unlike those plastic Miami boobs?

(Interesting to go off on a tangent here to recognize that those fake boobies are in the same sense a prosthesis that we admire rather than fear. Of course, we have the same curiousity and sometimes repugnance at the fake boobie because we understand that some person has intentionally gone under the knife and altered herself to make her more attractive for sex and they don’t look quite real. So we stare to make up our minds, or stare because we are just so darn curious. Aimiee Mullins, who has designed for herself a series of gorgeous looking prosthetic legs that can make her various heights has also noted the lack of difference between her legs and the many prosthetics men and women now use by choice in order to alter their appearance).

Like the performance artist Petra Kuppers, who with her disability stages performances that also investigate the stare, in fact invite it, Connolly has invited it by his being born with bilateral amelia (meaning born without limbs). It’s an unintended invitation, like being born into royalty with paparazzi following your every move. You don’t ask for it; it’s just sort of a birthright and a burden, whichever way you look at it — they seem to go hand-in-hand.

What I love about the camera is that it’s like staring back.  Being a photographer means you are like a voyeur, capturing other’s most private moments. One simple glance or expression, as they saying goes, captures a thousand words. Connolly has taken the stranger’s stare and turned it back on them. It’s rather empowering to turn the investigated into the investigator.  If I were Petra Kuppers, I’d be performing. If I were Estee Klar, I’d be writing. It’s what people who need to express a point, do. The camera captures private moments the way people stare at many disabled people who cannot fend off the stare. Often, we are intrepid lenses unwelcome in private moments. Yet Connolly, like all people who put their expressions out into the world has a conscience as he reflects in Sarajevo:

“What’s wrong,” [Beth] asked softly, her hand on my back.
“I don’t think I can shoot this anymore.”
“Why not?”
“I think I’m hurting people.”
“How?”
“People think I’m a beggar of someone who was hurt here.”
“Well, yeah. Maybe some people. But that doesn’t make you any more of a beggar than you were a month ago. You and I know who you are, so don’t let it get to you.”
“Yeah, but I’m using them for the photos.”
“So? It’s not as if their entire day is ruined or anything. You’re getting too wrapped up in everything. If you stop shooting and just quit, you’re going to hate yourself forever.”
(p. 198)

It’s a question of art to a certain extent — this idea of truth-telling and who and what moments we use as subjects. When we take our personal experiences and use others to reflect a truth, are we doing unto others as they do unto us? The discussion about staring at people who look different or disabled is a sensitive one, and the more others can see themselves, the more we all can understand the effects of what we do everyday — those things we think are harmless like taking about an autistic person like they are not present, or criticizing the family, the parent, or autistic individual who needs to fight for things that come automatically to other families like access to education, services, and just acceptance into our communities without having to talk about autism, acceptance and the like. From a personal point of view, although I have to end up talking about it, I don’t want to talk about it everyday. We want (and deserve) to live our lives with autism as does any other person who wants to live their lives in peace, without having to justify the reason why they deserve to be here — why they “have” autism, where it “comes” from, or why they should have access to that school or that aide.

As a writer who likes to write about certain instances in our day-to-day lives — from the person who stares at Adam’s wildly flapping hands, to the friend whose account I once used about, when I was new to autism writing and the idea of “normal,” her desire to change the appearance of her child’s ears (I used the story about our quest to make our children appear indistinguishable and in Adam’s case, it’s simply impossible) — it’s really difficult to write about these real-life events. Yet there is a need for many of us to write, or make photographs and art, about them. It seems that everyone is sensitive, but the context in which these accounts are written are important. The consciousness of  not wanting to hurt other people, seems to me, is a must in the making of art, not that the hurt won’t be there. In the world of black-and-white autism politiking,  there is a need for education through thoughtful literature, memoir, art projects like Connolly’s. These projects help us understand life from a different perspective, and because it has been “done to him,” Connolly has a need to state his sensitivity. The outcome of his work is worth it. Like art and writing, the poignant point is made when it is evident that the artist has weighed the cost and the benefit of telling true stories.

In his Epilogue, Connolly reflects how the looks, no matter how experienced or hardened we become, still effect him:

“As these pages show, my lack of legs has generated a lot of strange looks. Those stares still get to me sometimes. Sometimes I wonder if I should explain myself to the people who shoot a sad direction in my direction. Maybe, if it would relieve that moment of guilt or pity from their lives, it would be worth it. But most of the time, I let those stares slide off my back. A lot of times, I don’t want to talk about my lacking legs.

Maybe it’s because dialogue has a tough time blooming when it’s about negative space. There’s only so much you can discuss about something that isn’t there, and isn’t forthcoming. And rather than try to make a bad riff on a Beckett play, I’d prefer to end this page with what I do have…

So maybe the reason I’ve been so frustrated at times by the question What the hell happened to you? [what caused your son’s autism? — my interjection here] is because it’s simply the wrong one to pose. It focuses too much on a physical circumstance based on a singular point in time, rather than on all of the influences and characters that followed.

Perhaps Where the hell did you come from? is what we all should be asking.” (pp.226-27)

I would agree. It would be nice to be asked that question rather than “what happened” to us, even though autism is certainly a part of our lives. The question is, Do you see me? For Adam and I, and Kevin Michael Connolly, it seems, it means the whole package.

—-

Kevin Michael Connolly, Double Take: A Memoir, New York: Harper Collins, 2009.

ads
ads
ads
ads

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.