The Irony of Outsider Art

Soon to be on the web: The Joy of Autism: Redefining Human Ability and Quality of Life. Exhibitions October 5-November 5, Lonsdale Gallery, Toronto featuring:

Jonathan Lerman
Larry Bissonnette
Donna Williams
Michael Moon and
MukiBaum Centre for Complex Disabilities Students

and Lectures at the Al Greene Theatre, Toronto October 10-17 featuring (confirmed):

Michelle Dawson
Laurent Mottron
Nehama Baum
Ellen Yack
Susan Senator
Valerie Paradiz

Other tentative speakers and events yet to be announced.

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The purpose of this event is to bring a different view about autism to the public. There are many parents out there getting their messages from the media. The media makes autism a "mystery," "a puzzle," an "epidemic" of such wide-spread proportions, that parents feel hopeless and worse, transmit this message in the way they feel about their children. Instead of receiving support for education, we pay for expensive services and "therapies," and wait for cures that will never come (at least for the autism part, not the subset of "symptoms")because autism, as stated by those classified as autistic, is not a disease, it is a way of being.

Quality of life issues will be discussed at length. By adapting, viewing autism from this angle of competence and ability, requiring support in the schools and in places of employment, our individual and familial QOL can be enhanced significantly.

In discussing the art, as I did when I organized the Jonathan Lerman exhibit last December, I try to avoid sensationalizing it at all costs. It is not "good art" because it was created by an autistic artist so we coo at it. An autistic artist is not a savant just because s/he can create art. At a cost to humanity at large, classifications have hindered as well as helped us. It is much like receiving that autism label -- a frame of reference that later means nothing. Labels can serve to guide us in how to support people, and hinder us by giving us a kind of "permission" to judge the person on their label alone. For me, labels, classifications are my expanding and contracting universe, this constant push-pull between regarding Adam for who he is, and helping me to understand that what makes him different is okay, something positive -- not an abnormality. As humans, we construct and deconstruct all the time. This process is important.

Someone alerted me about the sensationalizizng aspect of art of by artists with autism. As there will be, in art-historical terms (or construction let us say), "levels" of art in the sense that some work, like writing, is more fluid and natural, others a little more "contrived," it is vital to note that all of the work is important. Some people, like Jonathan Lerman, whose talent comes naturally, we would view for the art itself -- it doesn't matter that he is autistic. But we are fascinated that he is because this knowledge can also open up a window to understanding that he, despite his limited language ability, or his different "behaviours," sees the world acutely. Other work, like the work from the MukiBaum Centre, where art is used in more "therapeutic" ways, allows people to self-actualize, communicate, relax and more. If we view a piece by a schizophrenic artist, who draws their hallucinations, then we can validate that person and those hallucinations -- a better view than to call a person "crazy." It respects a fundamental difference between "their" world and "ours," perhaps building bridges to understanding that we are, artists, musicians or not, all quite similar despite our differences.

I don't like exhibiting work just because it is "done by so and so." In the art world, there is as much work as I don't like as much as I do, but it is a part of an art-historical discourse, and many who are not in the art world think it's all elitest bologne, but it's not, it is, it is all of it. People have been trying to answer the "what is art?" question, at least since the "modern" movement began in the 1800's.

So, here I am coming from two backgrounds now (art historical and parent trying to change the perspective of autism in the sense of questioning and looking at human diversity as a strength as opposed to a weakness thereby attributing hierarchical value to human beings), trying to bring the discourse to the fore through art -- NOT by sensationalizing it, but by being critical of the work itself as well as by ensuring that a form of communication is being valued here. As an art historian, we as a society regard the art as much as we do the person making the art. This is a fact. We are curious about the maker, their frame of reference. So, even though we often want the work to stand for itself, we as humans must know the author. Is that a bad thing? I don't think so.

I've always said that the challenge is to avoid the sensational -- did Jonathan receive media attention because he was a great artist, because he is autistic? Both? And when bringing attention to the artist and the art, on the other hand, do we not begin to pay attention to ability and begin to view others as competent, whole? There is still value in this (and I know we have, as a blogging community, debated this on a similar topic with Hollywood and basketball -- which is both dissimilar and similar).

Here are some good quotes I considered ellaborating for my exhibition essay. We live in a world where the current classification of this art is "outsider." I agree that in an ideal world, all art will be "insider," but that is not the nature of the art world -- to declassify.

Here are the quotes. I am thinking of calling my exhibition essay, as I did this post, The Irony of Outsider Art:

Lyle Rexer, Alexander Marra, and others argue that this raw art, or Outsider Art, art by the untrained, is on the demise as cures, drugs and therapies have dulled the senses and "different" minds:

"The insane were, in the beginning of the 20th century, sadly locked away in asylums and treated with electric shocks and other horrible detrimental "treatments." Ironically though, they were also given loads of pencils, paints and other materials to occupy them, in hopes that this would keep them from violent behavior. With all the time on their hands, being locked up 24-7 -- away from reality, the outside world, they found refuge in their art, where a newly created world of their own devise, had found a place to manifest itself. With this society of the insane dispersed and obliterated by drugs and more "humane" treatments, the society of the insane may have ultimately found its demise, at the hand of those who had once appreciated and cultivated it." (Alexander Marra, Outsider Art: The Art of the Insane).

Lyle Rexer, an Outsider Art-historian also notes the same cynism of a culture that has barraged it's differently-abled citizens with drugs and therapies:

"Within and beyond institutional settings, the expanding armamentarium of drugs to manage psychiatric conditions appears to have diminished the output and intensity of artistic production. As a result, some theorists insist that the time of art brut is long since over. Given the complex circumstances of creativity... any alteration of the significant conditions of inner experience could make the form-giving impulse disappear. Art making requires reservoirs of energy and concentration as well as an inner tension and irresolution that powerful therapies can devitalize or suppress. Nevertheless, the impulse to form is so bound up with conditions such as schizophrenia and autism that art-making -- art brut, true outsider art - will not disappear until the sources of these conditions, not merely their unacceptable behaviors, are eradicated." (Rexer pp.167-68)

There is some irony in the possible end to Outsider Art and its seasonable acceptance among society and the art establishment at such exhibitions as the annual Outsider Art Fair in New York -- increasingly frequented by collectors and museum curators. It suggests a downward trend and a homogenization, and raises ethical issues about cures, therapies and human difference overall.

Outsider Art and the Value of Human Difference

Letter from Van Gogh to Theo, 3 September 1888"...suffering as I am, I cannot do without something greater than myself, something which is my life -- the power to create….And if, deprived of the physical power, one tries to create thoughts instead of children, one is still very much part of humanity. And in my pictures I want to say something consoling, as music does. I want to paint men and women with a touch of the eternal, whose symbol was once the halo, which we try to convey by the very radiance and vibrancy of our coloring."

There was a time when people who were “mentally ill” were institutionalized -- as Van Gogh was – confined to desolate, sterile places likely made so because the people who lived within them were considered unworthy and barren.

Within the most putrid and lifeless places, the human mind has transcended barriers. Be it a prison for the criminal, or the cell for the so-called “insane,” many pieces of political manifesto, literary works, and visual art have been created. Now take the idea of prison to the human mind, or better said, the confines of physical or neurological impairment, or mental state --works of art can express lucid manifestations of those inner workings otherwise mysterious to an outside onlooker. To the person who creates art, the process is a breaking away, a freedom from those confines, either real or imagined. As Van Gogh alluded, art is like birthing an aspect of ourselves in order to become part of a larger whole. In the case of those with complex disabilities, art production is as much of a freedom to be, as it is a by-product of the Self. Many differently-abled individuals have found solace and esteem through art making. As Van Gogh said, art not only makes one a part of humanity, but it calls for the world’s interaction with both the art and the artist. For the disabled members of our community, many who have complex disabilities (a series of diagnosis’), art is enablement and a validation.

A Brief History of Outsider Art

People have been fascinated with “insane art” since the dawn of psychology as a legitimate field of study. Even Plato and Renaissance artists saw a connection between creativity and insanity, and the idea lay dormant until it resurfaced in the 19th century. As Freud was making breakthroughs as to the inner workings of the mind, in particular, the development of the conscious and subconscious, we have paid some credence to the inner workings of the “insane” mind in a romanticized fashion. As with the rise of modern, abstract art, which left conservative, academic styles behind, the personal style and psyche found its way into public acceptability.

The art of the insane garnered attention in the 1920’s when Dr. Walter Morgenthaler published his book, Ein Geisteskranker als Künstler (A Psychiatric Patient as Artist) on Adolf Wölfi, his psychotic mental patient. Wölfi took up drawing spontaneously and the activity seemed to calm him. An itinerant Swiss farm laborer, Wölfi was institutionalized in Bern when he began to molest young girls and erupt in violent fits of anger. He was prone to hallucinations. Yet, after some years of confinement, he began to draw with no training in the disciplines that came to enter his work: art, music, geography, theology, and science. His vast oeuvre – an epic forty-five volumes in which he narrates his own imaginary life story, 25000 pages, 1600 illustrations and 1500 collages “is an attempt to describe his alternative scheme of the universe and represents, the locus classicus of schizophrenic art.” (Rexer, How to Look at Outsider Art, p. 55)

“While the causes of schizophrenia are most likely developmental and physiological, its effects are psychic and behavioral. At least since the eighteenth century, the display of its symptoms has been considered unacceptable by Western society, and those suffering from it have been cordoned off as much as possible into psychiatric and criminal institutions. Schizophrenic art has generally come to us from such institutions, most recently through art therapy programs. In the past, this artistic production was usually destroyed as a symptom of disease or even as a contributing factor.” (Rexer, p.57).

Of course, this treatment of the work as refuse is akin to how our society once regarded our differently-abled members. It is a clear indication of how we value humanity. Thankfully, the work of Outsiders is gaining respect and notoriety within public spheres, and the art market.

The French artist, Jean Dubuffet was particularly taken with the Bildnerei der Geisteskranken and began his collection of such art which he called Art Brut, or Raw Art. In 1848 he created the Compagnie de l’Art Brut along with André Breton. The collection came to be known as the Collection de l’Art Brut. It is now permanently housed in Lausanne.

Dubuffet characterized l’Art Brut as “those works created from solitude and from pure and authentic creative impulses – where the worries of competition, acclaim and social promotion do not interfere – are, because of these very facts, more precious than the productions of professions. After a certain familiarity with these flourishings of an exalted feverishness, live so fully and so intensely by their authors, we cannot avoid the feeling that in relation to these works, cultural art in its entirety appears to be the game of a futile society, a fallacious parade.” (from Dubuffet’s, Place á l’incivisme, Make Way for Incivism. Art and Text no.27 December 1987-Feb. 1988, p. 36).

Redefining Human Value

Dubuffet argued that society has asphyxiated genuine expression. The power of art, the heated core of one’s inner universe, cannot be filtered by “culture,” which has managed to assimilate every new development into an intellectual art discourse. Outsider Art-making then, quite the opposite of that executed by art “professionals,” becomes a shift from inscribing the “social codes of language…to action itself…desperate attempts to order the elements of personality.” (Rexer, p.57). Larry Bissonnette, an autistic artist who lives in Burlington, Vermont, finds solace in making art. It is a chance to fluidly express the world as he sees it, without correction. Fully aware that what he is making is art, it is clear that his motivation is the expression itself. This is how he describes one of his pieces:


“Larry leads an existence which promotes passion for colorfully patterned, open to attractions in environment like smokestacks. Past life of institutionalized person lets in novel ideas. Outsiders to this life can’t go out and obtain it. It’s significant that my artistic styles let me express personal perspectives of autistic but intelligent old Vermonter.” (Larry Bissonnette on his own work from Douglas Biklen’s Art and the Myth of the Person Alone, p. 177.)

Clearly, Larry is intelligent. Yet, based on his movements, his outward appearance, acceptance by society is a little more difficult. Larry’s art is the way he can bridge this difficulty, not only to affirm his views and intelligence, but to also bridge preconceived notions about human difference.

Modern art has embraced individuals with mental illness and difference to a degree, and the “modern artist” has come to be equated, stereotypically, with some kind of angst. Mark Rothko, Egon Schiele, Diane Arbus, Vincent Van Gogh, Jackson Pollock, and Edward Munch are some who are notoriously associated with their psychiatric conditions. Perhaps because of artists like these, we have come closer to viewing art by individuals with differences as significant for the sheer humanity of it, if not just out of fascination. Possibly, the work serves to break down the invisible barriers that society has built to create an Us and a Them – the “normal” versus the “disabled.”

In contrast, Freud believed that art was evidence of a person’s failure to achieve maturity -- that a fully integrated personality was one that effectively reconciled internal and external demands. Art, for Freud, sublimated unresolved infantile conflicts and wishes into acceptable substitute forms of gratification. All art for Freud was considered pathological or deviant. Beginning in the 19th century, insane art was not only observed, it was promoted. While Freudians swarmed the art to learn about the abnormal mind, artists watched as therapists encouraged art as a way to relinquish stressors and also as a materialistic insight into the strange workings of their disturbed minds, in hopes of finding a cure.” (From Alexander Marra, Outsider Art: The Art of the Insane) Perhaps this approach is a cause of the sensationalist view towards Outsider Art and artists – a gazing from the outside in without engaging or accepting the variety of human functioning, much like a human safely viewing a Gorilla in a cage.

Outsider Art is anything but outside. It can be viewed, if we choose, as effortlessly as looking at human-kind heterogeneously, as “Insider Art,” and as a need for human expression beyond confines and definitions, even those of the art market which seeks to establish a value between “good” art and “bad.” Art is for most, a means to self-actualize and is, as humans are, priceless. Art can de-stigmatize and demystify the labels that otherwise encumber so many members of our society.

Over time, we have come to learn that unlike Freud’s view of absence instead of presence of mind, Outsider Art has indicated intelligence and an internal universe that need not be feared. Art, or other modes of individual expression (it has been said that the computer is for the autistic what sign language is to the deaf) is an equalizer of humans, showing desire, a need for acceptance, awareness, and a means to self-advocate.

Donna Williams


Some people use art to understand themselves, others to communicate when no other source of communication is as effective -- (Donna Williams, Larry Bissonnette, Jonathan Lerman). These artists, as an example, are able to communicate that they are self-aware, intelligent and share their ideas on their autism and society at large. One might say that they help to bridge an understanding “between worlds” – “normal” versus “autistic.” For others still, we will never quite know if they had any idea that there was an audience for their prolific work. (Adolf Wölfi, Henry Darger).

Henry Darger

The fact may be true that for some artists, the audience isn’t of high importance and does not influence production. For other differently-abled artists, outside acceptance is an affirmation that can transition an individual from hopeless to hopeful – an assertion that we can be valued for the work we do. Oliver Sacks calls it enablement of identity. All we need to cultivate is a society that will support that enablement. Art Against Stigma
is the first world-wide program that puts forth the artwork by people with difference so that marginalization of this population can desist, and fear can dissolve.

Jonathan Lerman


In terms of enabling self-awareness and identity, expressive means to communicate can also be a form of self-healing, regulation and an engagement in the process of esteem building. “I paint, therefore I am,” is an assertion that as humans, all of our lives have significance and mark-making is part of being human, an urge as primitive as man’s first mark in the cave.

The beauty of Outsider Art, or art therapy for the differently-abled, is this “free-flow” approach, allowing spontaneous thoughts and action to collide. Jonathan Lerman began drawing suddenly at the age of ten. Allowed to draw freely, Jonathan’s fluid communication method is through charcoal and paper. Once instructed, Lerman’s work begins to look more contrived. This ability to self-teach, to be self-motivated, is in part, the awesome nature of his work. Unobstructed, Jonathan’s vision is not only articulate, it is profound.

Today, Michael Fitzgerald, author of The Genesis of Artistic Creativity: Aspergers Syndrome and the Arts, and others are beginning to acknowledge the fine line between genius, creativity and other mental “conditions.” Many gifts are associated with autism, however, to the point of being stereotyped. Yet, Seneca stated that “no great genius has ever existed without some touch of madness.” Shakespeare noted in a Midsummer Night’s Dream that “the lunatic and the lover, and the poet/Are of imagination all compact.” Temple Grandin once said that “it is likely that genius is an abnormality.” (Fitzgerald, p.14). Fitzgerald attempts to define genius into something discovered or executed in a way that fundamentally changes society. He notes that “genius” can occur in a neurotypical or in a disabled person, but within the confines of that paradigm. He believes that a person of “lower IQ” is incapable of genius, thereby providing a very narrow definition and understanding of test performance in people with differing abilities.

In contrast, Paul Collins, author of Not Even Wrong: Adventures in Autism says:

“A genius must assiduously ignore others in order to be guided by his own curiousity, by a desire to make sense of the world. And can’t the same be said of the light bulb painter? There is no way to know what an immense concentration and radically altered perspective will alight upon. To someone with great focus, the fascination is the point.” (p.214)

Recently, we hear more often of an acknowledgement of ability within so-called “disability.” We discuss genius burrowed within the most disturbed behavior. More importantly, we are learning to value people of all abilities, or differing ones, perhaps highly unusual ones. In so doing, we must not to contradict ourselves by sensationalizing artists and then institutionalizing them as unintelligent, ignorant individuals – “idiot savants” -- requiring mere daily care as an acceptable means to one’s quality of life. We cannot put people on pedestals and then seek to cure them for their abnormality. We must instead alert ourselves to what so-called “outsiders” seek to teach us about the beauty of humanity, and necessity of preserving human difference.

"The only man who behaved sensibly was my tailor; he took my measurement anew every time he saw me, while all the rest went on with their old measurements and expected them to fit me." --George Bernard Shaw

This essay was written for INspire, summer issue.

My Talismans

I’ve been wondering what every one says to their God (or themselves if they see fit) what they think about their lives, their lives with their children? What do you really say (or think)? Do you wish your lives were different? How many of you are satisfied with the way things are? When the going gets tough, do wish it could be easier?

Why is their so much irony in everything?

Adam lashed out at me yesterday for the first real time. He has experienced frustration in the past, some “obsessive interests,” for sure. Yesterday, in the midst of excitement and then going to the potty, he just lunged at me and pulled my hair. I put him on the soft bed and said no. I said no about three times. He rolled around and cried, but looked at me the entire time. I sat on the bed and held him, telling him to calm down. He did after a while, but certainly, the “upset” stuck, and remembering it just set him off a little again – on and off for about an hour.

Again, this morning while making eggs, he grew impatient and grabbed my new and adored love handles (hey, I just started training again). There was clear frustration on his face – all tensed up and red. I told him that I couldn’t cook them any faster, and held him as we counted to ten with some deep breathing. I’m hoping that maybe he will start counting to ten on his own one day, to help him self-regulate.

With the parallel experience of some profound advances in Adam, and some unbelievable skills, I am finding that his emotions don’t follow suit. My thoughts on the matter are this: I want to show him that I care, that I understand (or at least think I do) his frustrations, while teaching that aggression isn’t acceptable and by giving him tools to enable his success with all kinds of skills, including communication. If we can provide him with tools to be successful -- and I define success in an indigenous way, not always contingent on outside definitions, then perhaps I am filling a gap for him. I like to call it building bridges (a title of a book by O.T. Ellen Yack), that allows us to travel between both our worlds, sometimes allowing us to meet in the middle.

But for now, he is becoming so frustrated. He is having difficulty with unstructured time, which occurs at the end of the day. He wants so badly to communicate – he is typing every day on the computer – the animals he sees on the videos is one thing he does on it and together we are learning about the seasons on the computer as well as labelling actions. When I acknowledge what he writes with a song or some script, he is so delighted that I “get it.” In some ways, I hope that he understands his power and that I do “get it,” even if I feel clumsy in how I help in through this phase of his life. Perhaps that's how we all feel as parents -- clumsy, uncertain and in need of support that not pities us at the expense of our children, but that educates us to at least feel we are helping them the best way we can -- to morally support us, and accept us as the blubbering dimwits we sometimes are. In terms of parenting, for me, the goal is to understand Adam during the chaos of a tantrum, or the obsessive wandering up and down the stairs. During these so-called "obsessive" episodes, is he Gutstein's confused child, or Tito's child in need of gravitational pull? Indeed, the most terrible feeling of all for a parent, is the feeling of helplessness. There are times, in autism, when a parent feels such a disconnect between making a child happy, teaching a child through the tougher phases of life, discipline which tends to get wrapped up in the terms "weakness" and "deficit." The tendency is to look at the latter without remembering that our little ones need guidance just like any other child, but delivered differently.

So what do I ask the God I am still not certain exists, but seem to question a lot? I ask a lot of why questions, but most often I ask him how do I be the best parent for Adam? What should I do? How do I do it? (Please don't write ABA in the comments section -- I'm for finding effective ways to educate and teach and ABA is a term that means many different things to different people).

Life’s questions seem to all boil down to Adam’s joy, his contentment, his ability to do the things he wants. It feels that so much is riding upon my shoulders and it is those days I need to take a deep breath and count to ten myself. Practise what you preach, right? It seems that Adam’s life is built on the decisions I make today, and in the autism world, those decisions can feel heavy. Trial, error, thought, personal research, and time seem to be my most effective talismans. With every hurdle, there is a joy. With every sunset there is a dawn.

Donor Fatigue Versus Food for Thought

I have been very involved in fundraising in my life, as I’ve mentioned in a few posts thus far. When I approached individuals and organizations for money, I sometimes received a sigh of fatigue. “Donor fatigue,” as one put it. It gets me thinking today at how charitable organizations are cottage industries turned big business – many, when investigating the percentage of administrative costs from funds raised, go to salaries. In Canada, a “responsible organization” should have no more than twenty percent of its raised revenue go towards these costs.

Nonetheless, charitable organizations are popping up everywhere like business, all vying for your donor dollar. There are many “good” causes out there in my opinion, but the responsibility to sift through the mire of organizations and their motives has become much more complicated. Sheer altruism, wanting to be a “good” person, is naïve, and the donor has to now engage in due diligence or truly believe in the supported cause.

I consider this as I am setting up the Canadian Autism Acceptance Network. I don’t plan on doing any aggressive fundraising – I just need enough to cover expenses for speakers and exhibitions. I do not plan to take a salary. The purpose is solely to bring information that is not yet available in Toronto -- information that demystifies autism, or at least brings a countering view to the ones presented by the high-priced, higher-salaried orgs out there. I want to continue to bring exhibitions so that people with autism can have a venue and be paid for their work. I want to show, and not always tell, through the work of autistic people – without sensationalizing them, but through regarding and respecting their work. It’s rather like presenting Art Against Stigma. As a parent, I do not see any other presentation, lecture or exhibition that offers an array of literary, academic and creative individuals as will be offered this October.

Tickets will be sold to the lectures to help cover expenses. Media is supporting some promotion. Speakers are being confirmed and I hope to give you the line-up in the next two weeks. I hope some readers will consider coming to Toronto to support this. This is about creating new paradigms, and making new viewpoints available to the public. I believe controversy is healthy and important. Please bring some to Toronto. I'm not about to espouse a cause to grab a dollar. This is about getting fed with information -- food for thought.

A website is being built with more information about the lineup and event and will be available soon.

The Blog and Human Equality

This post has been written for Successful Blog and Outstanding Bloggers.


Autism is classified as a neurodevelopmental disorder that manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behaviour. Most notably, autism can make it very challenging for a person to converse in real-time, which can make face-to-face conversations and debates difficult.

Currently, in autism discourse, there are two distinct arguments occurring online between those who feel autism is an illness that must be cured – conducted largely by those without autism -- and then those who are autistic and their allies, who believe that autism is a way of being and that autistics have a right to be respected and supported within society – an issue that deserves the same regard as race, colour or creed.

Thankfully, the blog is an equalizer of humans, serving the autism community well at this point in time. It is a universe, a “sphere” without rules, without barriers – faceless, sometimes nameless. It transcends some physical and attitudinal barriers and in this realm, one cannot judge another based on appearance or so-called levels of “functioning.”

In years past, self-advocacy by autistic persons could not be as prevalent as it is today. If it was, people with autism would have to be edited and published – by and large not a bad thing. Letters have been written, but without the dialogue and the breadth of interaction the blog invites. With current media “hype” over autism, people with autism take offense and can advocate in public, through the blog. In fact, the blog is a powerful medium for the autistic person because, as mentioned earlier, communication difficulties that arise from delayed processing make real-time dialogue difficult for many, impossible for even more. With allowed time and space to communicate, the autistic person can self-advocate more effectively online. I direct you to Part Processing, Whose Planet is it Anyway?, Ballastexistenz, and Michelle Dawson’s website “No Autistics Allowed,”to name only a few (the rest you can view on the right side-bar).

In an email exchange with Michelle Dawson, she told me that it takes “extra time” to write emails. “Zilari” of Part Processing makes a number of comments on her processing time with colleagues at work:

“This is the main reason I prefer reading to listening. I like huge blocks of text I can sift through and find the relevance in. I like how text stays firm within time and does not melt away like sound. I like how reading does not demand every 30 seconds that one speaks to the text aloud and says, "Yes, I'm getting it, carry on!…"

It takes different brain functionings to type, read and write than to speak – some have pointed to Broca’s area and Wernicke’s area (the left frontal cortex and the posterior part of the temporal lobe) that have effected aphasia in some. It is widely known that “written language is often much more convenient for processing large amounts of linguistic data.” Verbal communicaton may be the sine qua non of childhood development measures, and of pragmatic communication (socialization) in this society, but with the advent of the blog, many barriers for the autistic person just mentioned have been destroyed, thus allowing others to discuss issues with each other – not only between those with autism, but with another population that didn’t have day to day access to this population. Parents like myself can listen to autistic adults which can then guide interactions with our own autistic children. Autistic people, judged all too often for their exterior “behaviours” or functional impairments, or romanticized because of their literary, artistic or other exemplary work, can be viewed as intelligent, “regular” beings deserving and desiring a quality of life beyond cures, therapy or daily physical care. This even-playing field enables people with autism to discuss what autism is, thereby demystifying the so-called “disorder.”

When writing, an autistic person can experience inertia. Blogs enable time to pass without further handicapping the autistic person to communicate when the will to do so is fluid:

“Some people find it difficult or impossible to summon certain ways of thinking on demand. For example, some people have a lot of trouble getting into an "essay-writing mode" - they'll get out the assignment, open up the word processor... and then sit there blank, unable to figure out how to begin. For another example, some people get easily caught in a given emotional state - frustration, say - and are unable to get out of it on their own... Lucy Blackman writes, in her excellent autobiography Lucy's Story: Autism and Other Adventures, that she has trouble getting her thoughts into the stream which effects what she actually does, unless she's had time to type it out before hand.” (From Theory to Praxis)


Blogging and email communication are invisible, fluid highways to change the face of rights and acceptance of autistic people as thinking, vital human beings and further, raises issues about how we treat disabled members of society as a whole. Michelle Dawson, banned from Autism Society of Ontario’s listserv , and Jim Sinclair who writes the article Don’t Mourn for Us, among many others, have created a dialogue on such an equal footing that so-called altruist seems assaulted and on the defence, remaining stubbornly rooted in some false-belief that the autistics are wrong about themselves -- that autism is a tragedy despite what the autism community (people with autism) say. As I noted in a post titled The Economy of Pity: “altruism exists largely for oneself, not others.” People are unaware of the pity they disperse and the autistic community doesn’t want that pity. Pity suggests that there is one who is superior over another. Society is forced to contend with the likes of Dawson because of her ability to write, for example, and her arguments about autism research and treatment in society. Society, in turn, brushes her aside only to spotlight the discrimination even more. Other people with autism and their allies, are able to discuss news events and issues about autism and rally behind the likes of Dawson and the acceptance movement, thereby taking the revolution off the streets and into the information superhighway.

So, the autism discourse has become political – with demands for basic supports, respect, tolerance and inclusion to a society who largely hears from mainstream media that autism must be cured, therefore assuming that autistic people have a lower quality of life because of their autism, and who see autistic people as inferior beings. Cures seem to come from camps wishing cost-effectualize the human race, inauspiciously reminiscent of the former eugenics movement in America. People with autism and parents like myself, are frustrated and outraged with the messages that mainstream media is purporting.

Bob Wright, Chairman of NBC, and his wife Susan, decided to take the hyped “epidemic” message and run campaigns over the media because of their recently diagnosed grandchild. This family, who personally believe that vaccines have caused the autism , are personally funding, and fundraising, for research to find out if thimerosal, the claimed offending preservative, is the cause of increased autism diagnosis’. They began a charity called Autism Speaks and have coupled with The National Alliance for Autism Research (NAAR) in rallying for greater funding on this basis, even though the science has already disproven that vaccinations have been the culprit, or the cause of autism. Kevin Leitch, web designer of Autism Hub that has brought "the best of autism blogs" together, exposes Lenny Schafer's opposing views about mercury in vaccines. Many autism bloggers committed to uncovering rigourous, peer-reviewed science, dedicate their time to disproving these claimants, who unfortunately, have a large portion of the public ear, not to mention access to deeper pockets. These bloggers: Kathleen Seidel, Autism Diva, Kevin Leitch, Bartholomew Cubbins, Michelle Dawson, and many others, have spent countess hours on legal and scientific matters that are now shaping mainstream messages and court cases – the latter from parents suing based on thimerosal in vaccines.

The call for altruism to corporations and high-ranking political figures like Alan Greenspan and Laura Bush, are so misguided – as the funding and the goal is being disputed by autistics and is nonetheless disregarded, furthering ghettoizing the autistic population. This shows the special interests of the media and the lack of objectivity, just when the public turns to the media first for some kind of truth. It is the highest abuse of the media, and bloggers are largely motivated by conspiracies, special interests, and abuse within trusted institutions in general. As a former corporate chair of NAAR, I was shocked at the organizations' apparent disregard for autistic persons and their message when I suggested that people with autism should be directing the research and the public messages – not researchers and parents. This obvious disregard is a slap in the face to the autistic population.

The blogging movement is thankfully more democratic showing a widespread public dissatisfaction with the media, politics, and many charitable organizations. David Kline, who writes in Toward a More Political Democracy – an excerpt from the book Blog with Dan Burnstein says, “Any serious discussion on political blogging of course, must begin with an examination of how it has reshaped the way in which Americans get their political news and discuss the political controversies of the day. Because on that score, at least, political blogs really have become, in the words of Time magazine, `a genuine alternative to mainsteam news outlets, a shadow media empire that is rivaling networks and newspapers in power and influence.” (p.5)

In this “citizen-created medium,” people with autism and parents can tell it like it really is. Blogs are devoid of editors and special interest groups who control mass messages about autism -- messages crafted by those who are not autistic. Some autism groups have garnered their energies as in Aspies for Freedom, using a critical mass of autistic people to ensure the message of acceptance of diversity is spread. Kline further states that, “This is not the first time citizens have created their own media…During the Renaissance, for example, `commonplace books’ helped educate citizens cope with the information overload of the newly emerged printing era…these commonplace books reflected personal experience and conscience of their authors.” (from Blog! P. 245).

Recent changes in the thimerosal argument by bloggers and the Schafer letter will hopefully kill the myth that vaccines cause autism, showing the power of online discourse. “The results are in. Without blogs, there wouldn’t have been a Drudge Report to help speech the impeachment of a sitting President. Trent Lott, hounded by bloggers for a racist remark originally ignored by big media, would still be Senate majority leader. Blogs played a critical part in the downfall of Howell Raines, former executive editor of the New York Times, in the Jayson Blair scandal.” (Blog! P.369) I'm sure the autism community will soon be able to make the same claim.

The quality of blogs will be scrutinized by their audience. Bloggers will be subject to the same editorial scrutiny for fact and accuracy, or will be quickly corrected. (In fact, I am expecting some corrections and additions to this post). As autism has entered the human rights stream, I witness a similar scrutiny to a court of law. I am certain, in fact, that this online dialogue has influenced legal arguments and will definitely change public consciounessness about autism.

I’ve heard murmurings of the autistic person being unable to participate in live video-feed discourse. Yet, for centuries, the written word has been a powerful force to change the world. With allies, both the keyboard and the spoken word will move toward cultivating a tolerant society. The blog is not just a nice little cathartic diary in the autism world. It is a major movement about disability and humanity that can no longer be ignored -- no matter how hard others try.

Memories and Milestones

Please, reader -- let me indulge in some motherly memories today. I took a reprieve from work and decided to organize a few photos. Adam just turned four and I realized that spring cleaning also meant organizing -- that milestones happen as quickly as the years pass and I don't want to forget anything. Also, a few people with children with autism have been asking me about Adam as a younger child. It got me thinking about why I named this blog Joy of Autism -- how Adam is a joy and autism is a part of who he is. With Enya softly playing in the background, and my back door open to sunshine and cool spring air, I began cutting and pasting -- with a few new "books" to last many lifetimes: the photo albumn.


 

"Lay your sleeping head, my love.
Human on my faithless arm;


 

Time and fevers burn away
Individual beauty from
Thoughtful children, and the grave
Proves the child ephemeral:


 

But in my arms till the break of day
Let the living creature lie,
Mortal, guilty, but to me,
The entirely beautiful...


 

...Let the winds of dawn that blow
Softly round your dreaming head
Such a day of sweetness show
Eye and knocking heart may bless,
Find the mortal world enough;


 

Noons of dryness see you fed
By the involuntary powers,
Nights of insult let you pass
Watched by every human love.

---Excerpt from W.H. Auden's "Lullaby"

Rare Flowers

Quite a week…my first Passover Seder, Adam’s school party, his fourth birthday party out in the yard, spring's first sunshine blessings. I have many stories in my head and I haven’t had a spare moment to write any of them down.


Adam's fourth birthday party 

In the midst of my anxiety that everything be organized to perfection, I decided to add a little worry over Adam’s academic future. Family is hearing things about schools – autism schools. Special needs schools. Here in Toronto, many of the LD (“learning different/disabled”)schools do not accept children with autism – “too disruptive,” one administrator commented once to me over the phone. Some others have hummed and haa-ed, but have “invited” me to send in a registration form with a hefty non-refundable deposit. There is the day school that may still agree to my plan to implement a supplementary IEP-type program. If this doesn’t pan out, there is the home-schooling option – an option says Businessweek’s Michelle Conlin, that a “many number of affluent parents [are implementing as they think] they can do better than any school.” (February 20, 2006)

Hand it to Bonnie Ventura, who commented on my post A Weekend Thought to Change the World. She has been “in this” a lot longer than I, and frequently directs me to an article already written on one of my thoughts or “epiphanies” on autism, acceptance or education. I specifically wish to direct everyone to Thomas Armstrong’s paper “Special Education and the Concept of Neurodiversity.” (See This Site for more ideas on education) As I said in my previous post, if we look at the issue of educating those with difference in the opposite direction, if we do not view people with deficits, but instead regard their strengths, we could affect education in a positive way. Despite the difficulties, still, in finding a suitable educational match for Adam, I realized from Armstrong that special education has come a very long way since the 1970’s. He blames the system, not the special educators, who have to “work within a system that requires that they treat their students as disabled. As many a parent or teacher has pointed out to me: how are they going to get special services in the first place unless we get them labeled with a disorder?” So this current disability discourse, this view, cannot set up people with differences for success.

In Canada, parents who sue the public school system, or fight for ABA services beyond the age of six, must fight within a system that will continually suppress special needs, if not oppress them. I once wrote last September, that I believed these ABA court cases were hindering the education process and success of our kids. I now will elaborate that these is more likely the case because the system continues to frame and define people with autism as disabled, unable to care for themselves, instead of providing support and education throughout an autistic child’s academic career. When we presume all people competent, with multiple intelligences, with varying levels of ability on this tape measure called life, we enable people to become contributing members of society.

When Adam was diagnosed, the diagnosticians paid special attention to keeping Adam at a particular ADOS score “so he would be eligible for services.” I didn’t particularly know what that entailed at the beginning of the process, and I soon abandoned those government services. Current ABA programs offered by Toronto Preschool Autism Service, are lacking at best. Young people calling themselves “therapists” are setting up “behaviour shops” endorsed by this government agency. Desperate parents pay monthly fees for the agency supervisor, who meets with the parent only once a month, and send in their therapists who the parent has to pay additional hourly rates – thirty to fifty dollars an hour. Other services, like Floortime, RDI, incidental play, occupational therapy or speech language therapy, are not approved by the government as services that can be subsidized, even though they can benefit a child with autism. The agency here in Ontario paid for some “Direct Funding” so that some programs could be done in the child’s home. Such a program would have to have a psychologist – another hefty fee – oversee the program. This agency saw that they couldn’t control home-based programs, so they are beginning to withdraw the Direct Funding option and insist that families send their kids to their “approved centres,” reminding me of the Bettelheim days when parents were considered ineffective at parenting their autistic children, or blamed for their autism. In Bettelheim’s day, children were institutionalized.

When I look back and see how Adam is doing without this government directed program, how Adam can receive the unique one to one program at home that I have created with him, with the help of my personal team, within an integrated nursery school that works with my team as well, I can’t see how the government model can work, because it still strives to homogenize autistic education and training, when autistic people are all unique. The cost of running a home-based program is still hefty, and I am always afraid when the government wishes to become involved in Adam’s programs. I do not think “the system” is set up for independent training, or leaving Adam’s future in the parent’s hands. Yet, this is what has benefitted Adam the most. My involvement in his school will not be anything less.

In this example, I feel that Thomas Armstrong is right – that moving beyond this discourse, these models and institutions for autism would change our education system as a whole, and treat every individual as, in his words, a beautiful and rare flower. He posits reasons to reconsider to change our educational system:

“…Research has been coming out about newer disorders affecting larger groups of people. Harvard psychiatrist John Ratey, for example, has written about `shadow syndromes,’ which are milder forms of psychiatric disorders that afflict far more people than are currently identified. Other researchers have suggested that half of all individuals will experience mental illness sometime during their lives. It seems to me that while I’ve been attempting to focus on the positives in the lives of children and adults with special needs, research and culture have been moving in the opposite direction, finding more and more things wrong with more and more people…Recently I’ve discovered a new concept – neurodiversity – that I believe provides a means of reversing and moving beyond this expanding disability discourse. Neurodiversity is a term that was first used in the Aspergers/autistic community by an Australian disability activist named Judy Singer in that late 1990’s…This new term has great appeal because it includes both the difficulties that neurodiverse people face (including the lack of tolerance by others), as well as the positive dimensions of their lives, something that is generally missing in the disability discourse except in a token way…

Instead of wallowing in the current `disability discourse,’ both regular and special educators have an opportunity to step `out of the box’ and embrace an entirely new trend in thinking about human diversity. Rather than putting kids into separate disability categories and using outmoded tools and language to work with these students, a perspective based on neurodiversity invites educators to utilize tools and language from the ecology movement as a key to helping kids succeed in the classroom. If we apply the same kind of diversity model to children as we do to the flora of the world, then we should be in much better shape than we are now.

Consider the issue of inclusion in education. Regular classroom teachers are far more likely to want a `rare and beautiful flower’ or `an interesting and strange orchid’ included in their classroom than a `broken’ or `damaged’ child.”

In this model, in looking at our children requiring different ecological thriving factors, we can reach the goal of addressing our children’s need for optimal growth. This goal is in direct contrast to trying to “cure,” “fix,” or “repair” “remediate” a child’s disability,as Thomas notes. When I look at my four stepchildren, I also see an apparent need to cultivate each child differently – by imposing the same standard on each of them, they can become depressed and stressed about their futures.

Toni Morrison recently said in a Brick interview with Maya Jaggi that “the black people were the first modern people.” She views slavery as “a reign of terror in which the victims were stripped of the normal places for sustenance and had to invent and reinvent…” in that sense they were modern, “not clinging to tradition for the sake of it.”

I had to consider, as I’ve suggested in many previous posts, that autistic people have a unique opportunity to change disability discourse from hereforth – that this dialogue, these debates, this struggle for acceptance, equality and education, makes the autistic modern. The need to reinvent the system, to redefine ourselves as human beings, is of utmost importance at this critical juncture – a point where the media and certain organizations are loud and brash in their calls to cure a type of people.

Last week, I attended a gala organized by my new friend – Dr. Nehama Baum -- “The Possible Dream Gala,” for the MukiBaum Centres. Tables were reserved for some of her students and I met her son Muki, who is forty-six, with cerebral palsy and who is deaf, for the first time. Others, with various differences, got up and spoke, danced. My husband and I purchased a painting at live auction – a collective effort by young children with complex disabilities who were believed to be hopeless and incapable of doing anything. For me, it is a symbol, a talisman, that everything in life is possible if we believe in people. This painting sits in Adam’s room where he does his one-to-one work. Forever, I will tell him the story about these children and what can be achieved if we work hard and believe in ourselves.

Yesterday was Adam’s fourth birthday party. I kept it small as I usually do now – I avoid the loud play gym rentals with a class of twenty children running about wildly. Adam has taught me how simplicity is beauty. I put flowers on the table, a few toys outside, a lovely set up of food and sweets. I hired a percussion troupe which Adam enjoyed at the Sick Kids Enchanted Evening Gala last week. He sat enamoured with the various instruments the drummer pulled out.


Adam and the percussionist 



Adam the musician 

I invited six kids and their siblings – four of whom are also autistic – all different, rare and beautiful. The sprouting yellow daffodils surrounded us, but these rare flowers stood out in all their glory. They were a delight to behold.

A Perfect 10

It was Adam’s fourth birthday today. He began the day early at 4:30 a.m. and despite the fact I just want to lie down and rest, the day, the thoughts, moved on. Adam started his day by typing his first and last name on the computer. I wrote that he was four years old, that it was his birthday. We got dressed and sauntered down the steps and moved in our usual way toward breakfast. I gave him a magnetic calendar for his first present – he knows all the months and I would like to use it functionally. I was excited to give him a gift, trying to make a connection between the word “birthday” and his day. He tore open the paper to my delight, picked each month and recited it, in between a few bites of egg, sunny-side-up. I rustled about the house as usual, getting ready for school. We packed up our knapsack and chocolate cake for his friends at snack time, and I bellowed “Adam school time, go get your shoes.” He headed for the door, but insisted on bringing the number 10 from the calendar. It was quite an issue – he wouldn’t let go of that number 10. I didn’t want him to lose it – the calendar wouldn’t be the same without it. I tried to trade him the number 10 from the calendar for a 10 of spades from a nearby deck of cards. He liked that, took it, but still wouldn’t give me that other 10, holding it with all his might in his tiny fist. I told him that he couldn’t take that 10 to school, and felt my temperature rising as he yelled and protested. I told him we were going to school and he could see that 10 when he came back home. Eventually, reluctantly, I got the 10 and stashed it away before stuffing ourselves into the car.

It’s hard to set boundaries with any child, not to mention one who has autism. It was his birthday, and I wanted him to be happy, not sad. I know he used to get stuck on numbers, but I also knew that I just gave him a new toy and any child would be a little obsessed with something new and not want to let it go.

On the drive, I opened the window for the cool spring breeze against my reddened face, the route always the same -- the only difference in the change of season, the winter that finally turned to spring, the new brand gleaming convertibles on the road, the rising gas price. I wanted to cry, I don’t know why for sure. The dull yet calming repetition or our day? Our upset? I thought how if I called someone to give me advice, perhaps they would treat Adam’s protest as a “behavior,” that if I mentioned the incident, he would be the targeted culprit and not the fact that I stupidly gave him a gift at a rushed breakfast right before school. The “behaviour” would be addressed with rigorous, unwarrented “procedures." At the same time, as he continued to yelp in the car, on and off, I wondered who was there to support me. No answer would suffice this morning. As a parent, if you ask for help, you don’t always get what you want. If you don’t ask for help, you feel alone. I often don’t want to hear those answers that never quite fit the situation, so I tend not to ask unless I'm in a more resilient mood. Often, if you ask a simple question, you receive a deluge of unsolicited parenting-of-autistic-child advice. Sometimes it’s just better to sit with all your mixed up feelings until the answer comes to you. Sometimes, it’s better to just be a temporarily confused parent -- feelings, guilt and all.

I have another birthday party for Adam on Saturday with four other autistic boys and a couple of other friends from the class and the neighbourhood, my first big Passover Seder to host tomorrow, art installations, and lots of other things on my plate, like us all. When Adam begins to protest, it’s usually when I’m too busy to be as patient and attentive as I would like. When I’m too busy, it is a sign to slow down and attend to Adam and the things that agitate me.

Adam and autism certainly leave me with lots of questions, problems to solve, people to manage, convince teachers and others about ability, programs to coordinate and more. The questions can be overwhelming at times, Adam’s will and protestations a little frustrating. Yet, weighed within the context of life itself, Adam, and our lives, are still a perfect 10.

(Oh.. and he loved his cake at school!)

Week-End Thought that Could Change the World

Let’s end the week with a thought:

If we base our teaching methods on human deficit, whose intention are we serving?Conversely, if we teach based on a human’s ability, what is possible?

In recent ramblings about how to teach an autistic child, I’ve come to this conclusion. It is a shift in thinking, as it requires us to think about human difference and disability in the opposite direction.

Autism and other people with varying degrees of disability all have something. As human beings, we all have spirit. We all have inner lives. We all have desires. To assume that even the most disabled person does not have these feelings is to assume they are not human at all. And we all know this is false.

A doctor asked a clinician I know the other day, “do autistic people form attachments?” When she told me this, I gave my little laugh of disgust. It is alarming how pervasive these thoughts are about autistic children and adults.

I’ve been reading some research papers, which discredit Cohen’s mind-blindness theories that have done a lot more harm than good. Dr. Paul Mottron has discredited many notions about cognitive delays in autism, and deficits in face-processing ability. There is a lot to still discredit publicly. It is going to happen, I assure you.

In the meantime, as I prepare for school meetings and think constantly how best to teach my child the skills that he is good at, which he will be able to excel in, which will bridge the easier to the more difficult, I think about every human right to BE HUMAN which means, to dream, to express, to belong and to choose. Quality of life for people who are severely disabled means not just providing for daily physical care, it means coveting the human spirit and enabling it to express itself through whatever means possible.

I ask you: think about what is possible this weekend. Think about what is present in your child rather than what is missing. Think about struggle as a rite of passage in life itself.

Only good can come of it.

Planters of the Doubt Seeds

Anonymous is back on my site, selling ABA (see comments section of yesterday's post). Anonymous, this one anyway, has no guts. Anonymous wants to promote intensive ABA therapy at ANY mention that a child with autism has had a bad day. It must be because that that child isn't doing ABA. Anonymous called me ignorant by dismissing ABA. I call anon ignorant in assuming that from one post Adam needs intensive ABA, assuming that we've never tried it. I also think it is ignorant not to acknowledge that there are many modalities of teaching that work for children with autism.

Hey, if it works for your child, do it, I say. I strongly disagree, however, that a child who is an apple must be turned into an orange. This is most often the premise under which ABA is used, unfortunately. In short, that attitude and attempt to alter a person, is a human rights violation.

I must also say that Adam is doing, despite some of our harder days, amazingly well. I do not need to compare him to other children to see how he is doing.I can look at Adam's world and see it without this kind of context. If I had to compare, which is the way people with autism are evaluated all to often, he goes to an integrated school, he sits in circles, sings songs, participates in groups, plays "functionally" -- he is beginning to do so many things and I run the risk of belittling him if I ream off a list of what you want to hear. If I had to look or compare with other children of the same age, I witness the same wandering behaviours. At the age of four, I see many other kids tantrumming. It is utterly ridculous to assume that autism is always to blame. It is naive to put autism under this kind of microscope. Some things will take a little longer for Adam, maybe, likely -- it doesn't matter. I find it utterly horrible for people to come on sites, and comment that one's child would be "doing better if..." You don't know us. You don't see my son. You, anonymous, are ignorant.

Parents who have not visited at least a hundred children with autism, as I've done over the course of two and a half years, who have tried "intensive" ABA therapy which didn't work for Adam, who spends hours researching options, combing through both rubbish and viable teaching ideas, might be subject to doubt with people like these. Afterall, isn't it compelling to believe when one says you haven't done something that it must be your fault?

This is the problem. People who are "selling," particularly the ones who stay anonymous, seep into parental doubts. I know because I was there. I know because the call of diets, DAN!, mercury poisoning claims (don't you know that the "feeble minded" of the 1800's were also claimed to be contaminated by mercury?!! I mean, must be something to cause the difference, right? Argh.).

C'mon anonymous. Have some guts. Come out of hiding.

---


Postscript:

On a lovelier note...in the middle of writing today, my friend -- the one I wrote about in earlier posts -- came by. It was emotional. It was EVERYTHING. You see, if you can be honest, things can happen. Beautiful things. I do have a friend who really cares. Without getting things out in the open, I may have never otherwise known. Life is too short and we need to KNOW who stands with us. Without friends, ones I can really talk with, this is too difficult. I think it took a lot of courage for my friend to do what she did and I really do have renewed faith in people.

Did I mention the sun is shining in Toronto today?

Human Rights Violation In Sudbury

Here is a story from TalkSudbury.com. Another reason why we have to keep advocating:

> Autism is classified as a neurodevelopmental
> disorder
> that manifests itself in markedly abnormal social
> interaction, communication ability, patterns of
> interests, and patterns of behavior.
>
> Shocked and disappointed was how we at
> TalkSudbury.com
> felt when one of our members sent us this TRUE story
> about the terrible treatment a local women who is
> also
> Autistic received from local retailer, Black Cat
> Too!
>
> I am an autistic adult living in Sudbury, and use a
> wheelchair.
>
> Being autistic means that I have many sensory
> differences, as well as social skill difficulties.
> Thus, when I am out in public I wear headphones all
> the time, in order to deal with the busy world.
> Otherwise would not be able to leave the house at
> all.
>
> Friday March 17th, 2006 after a long workout at the
> YMCA, decided to go to "BlackCatToo" where I have
> gone
> for YEARS to get magazines. In fact it has been the
> only place I ever buy magazines (autistics are
> creatures of habit). I buy Adbusters, Shambhala Sun,
> and some Yoga magazines once a month and when can
> afford them.
>
> This time was actually also looking to see what kind
> of running/triathelon/marathon magazines they had,
> since am training for a marathon and during my
> training period, I have entered many local races to
> raise funds for several non-profit organizations
> locally. I will be pushing my wheelchair through
> four
> seperate 5KM courses between May 2006 and July 2006
> here in Sudbury to raise funds for our local
> charities..
>
> I did NOT touch any magazines, I had NO TIME to,
> before the 'problem' started.
>
> When went in there, turned to the left (where the
> budhist and yoga magazines are) and sat in my
> wheelchair listening to my walkman (which is what I
> ALWAYS do, in EVERY store that have gone in alone...
> am terrified of having the workers at stores talk to
> me, so the walkman drowns them out, and they
> eventually notice the walkman and realize am
> listening
> to music and leave me alone).
>
> Well, very soon after entering (within one minute)
> the
> man behind the counter was yelling the following
> words
> at me:
>
> "I said HELLO to you and I EXPECT my customers to
> SHOW
> PROPER SOCIAL POLITENESS and say HELLO back".
>
> I started to cry. I said I have my walkman on
> because
> i want to drown out the voices of people, because I
> am
> autistic. Talking to strangers sends me into a panic
> and then I need to leave the store.
>
> The man continued and said - well HERE in OUR STORE
> we
> EXPECT people to BE SOCIALLY POLITE and you have to
> say hello back.
>
> I said I am autistic and I have difficulty talking
> to
> strangers and that I fear this means I cannot shop
> here if I have to talk to strangers, all the while
> my
> anxiety increasing as I needed to try to explain
> this
> to the man behind the counter, with the hopes that
> if
> I was able to help him understand my disability, he
> would let me shop there.
>
> To which he replied:
>
> "FINE. GO BE AUTISTIC SOMEWHERE ELSE THEN!"
>
> this incident happened at exactly 11:30 AM Friday
> March 17th, 2006 at the Black Cat Too store.
>
> Now, I fear that I cannot get the magazines that I
> want, because to go to Chapters, I would need a
> seperate Handi-Transit ride booked just for that,
> and
> it would add $4 to the cost of my magazines. The
> Black
> Cat Too was easily accessible from the YMCA where I
> am
> allready 3 days a week.
>
> Furthermore, have always believed in supporting
> local
> independent shops, rather than the big 'box stores'
> like Chapters.
>
> This leaves me feeling very much like I could be
> making a complaint to the Human Rights Commission
> about the fact that the store will not serve
> autistics
> and tells us to "go be autistic somewhere else",
> (which IS a violation of the Human Rights Code under
> discrimination due to a disability).
>
> Now I realize that my magazine purchasing days are
> over, and am going to have to settle for reading
> things online only.
>
> Am very sad about this incident, considering I have
> been a loyal customer of Black Cat Too for a decade
> (since 1996) and this has never happened to me there
> before. I do not understand why they changed their
> policy and expect those of us with communication and
> sensory disabilities such as autism to 'go be
> autistic
> somewhere else' merely because we do not know how to
> be socially polite enough to talk to strangers.
>
> To learn more about Autism please go here and here.
>
> TalkSudbury has communicated to our member that we
> WILL BE purchasing subscriptions to her two
> favourite
> magazines. ON US! Greater Sudbury should rally
> behind
> this individual and voice your collective disgust
> with
> the way she has been treated in her own city.
> Absolutely SHAMEFUL!
>
>
>

The Unsettled Path to Acceptance

This is a most unsettled state I’m in tonight. Adam is frustrated – trying to talk, not being understood (he slurs his sentences). Also, he’s turning four next week and I am finding a new desire for independence – a desire to do everything on his own, pretty much. He resists my care of him – brushing teeth, brushing hair, getting ready for school. In some ways, he reminds me so much of my youngest stepdaughter when she was four. I remember a lot of whining, tantrums, and lots of hitting. While I remember her being much more articulate than Adam, I do see similarities in behaviour. So that should make me feel okay, right?

But it doesn’t. Adam is growing up, and I find myself nervous. I want to teach him how to use the computer – he is already typing his own words, but in the same way that he labels things. My team of therapists suggest it is “too early” to teach Adam the computer for communication purposes, and that baffles me. If Adam has a skill that he’s inclined to use and benefit by, then why is it too early just because the other kids aren’t doing it?

At school, Adam’s teacher notes that despite his words going down, his skills are going up – again that time of acquisition, of processing and for me, of waiting. I wrote before that I find these transitional times difficult. Logically, I know that these periods are necessary, but I wonder if I’ll ever stop worrying.

I find extracurricular programs so difficult to find, as the music class I had enrolled him in became very “verbal,” entrenched in pretend play. Long diatribes of being a pirate on a ship bored him, and he eventually got up and wandered around the room. So many “teachers” really don’t know a thing about autism. Adam is expected to sit and respond.

There is a lot of talk about these ideas of acceptance and just wanting one’s child to “function” in the world and “have all doors open.” Today, I wanted to pack this all in, all this blogging, learning about science, this struggle with friends, my lonliness in this struggle as there seem to be no more friends out there who really care about me, or want to understand what this is all about. No parent thinks they will be engulfed in controversy about autism. No parent has any idea that they will have to advocate for their child every single day from schools, to the doctor’s office to a nice little music class. No parent realizes that all privacy is lost with therapists coming and going from the home every afternoon. No parent has a clue that there are people who want to tell you how to raise your autistic child at every turn – that they think they know better. No parent banks on getting involved in autism so deeply in order to improve their child’s future, that it becomes their new career.

But I know of many.

No, acceptance is not easy, friends. It is not standing idle.

It is about recreation. It is about creating new friends, and new communities who will teach and support us and our children. It is about creating a new awareness what difference, autistic difference means, and supporting it, and supporting success. It is about investigating our notions of well-being and happiness.

If this is rebirth, I think I’m in labour.

Because You're Worth It

I was at a function last week, honouring a CEO of a major Canadian bank. Amidst a room full of businessmen and women, and philanthropic leaders, the man was being honoured for his Words And Deeds. I listened intently to his speech, waiting for something I could cling to, some words that hit the heart of human rights issues for all people. I wasn’t surprised that despite some of the fine work by the man, the speech was a string of rhetoric meant for an audience largely invested in commodities. This CEO spoke of Canada as a tolerant and diverse nation. Tolerance, ethnic diversity, struck a chord with me, and I waited for an acknowledgement, a phrase that pooled human diversity and disability together. In contrast, diversity and tolerance were directly equated with global competition – the idea that we accept diversity, ethnic diversity specifically, as long as we can give it some economic value. Diversity, therefore, is acceptable only if it can contribute to society in the market economy. The hierarchy of tolerance, in my mind as I sipped a glass of sour conference centre wine, struck me. When, I asked myself, did we begin to equate tolerance, acceptance and diversity with global competition? Where do people who are physically or neurologically diverse fit into this economic universe? Where do people who cannot fit into it, who cannot globally compete this way, stand in his view? This CEO conveniently left out the disabled because within this framework, they cannot exist. If you cannot compete in the global marketplace, then you do not have value. But is this what he really feels?

I prefer to believe that this CEO is not purposefully omitting the disabled -- the issue is so much more complex and his speech shows how the discussion cannot fit into current frameworks of altruism and market economics (see Economy of Pity). I consider that the current worldview about disability and the construct of competition are incompatible. As we can see from previous posts, the ability to compete, equated more often than not with physical strength and uniform appearance, is similar to Karl Marx’s ideal of the perfect worker. Those who are unaware or unaffected by disability have an obscured notion about it, so there remains huge need to address these very issues with our leaders.

This is commoditization of life. Commoditization of healthcare, of just about every aspect of our current existence is based on markets. Parenting is a billion dollar industry. Getting frustrated with the endless frenetic calls to do something for our children, I inadvertently picked up a mothering book the other day called, 12 Simple Secrets Real Moms Know: Getting Back to Basics and Raising Happy Kids, by Michelle Borba, Ed.D. I don’t normally pick up self-help or parenting books of this kind very often. Yet, something in the title at this point of my journey in parenting Adam, was compelling. I have spoken a lot about how marketing calls us to do something for everything – how marketing leaves us as if we’re missing out on something and that we are not good enough as we are -- there is always something to "improve." Parents of NT kids are unhappy, kids are unhappy. Why? We are unhappy because we are learning that goods do not free us but indebt us, that happiness is intrinsic instead of extrinsic. These ideals have filtered to the autism community where society deems that our children and our parenting of them are not good enough, that if we buy someone’s intervention package, our children will learn how to fit into society. Question is, are we really satisfied the way we’re heading? Is learning to fit the right goal?

Consider these points of a generally exhausted society in the context of well-being or Quality of Life (QOL) which I will use interchangeably) taken from Borba’s book:

-Of the American moms surveyed, 70 per cent reported finding motherhood “incredibly stressful” (Ladies Home Journal, 2000)
-Depression affects 30 per cent of mothers of young children
-One-third of parents in one survey said that if they were to do it all over again, they would not start a family
-In the same survey, 53 percent admitted they felt significant resentment in making sacrifices as a parent
-In a Texas survey, 909 women said they found taking care of their kids about as much fun as cleaning their house, slightly less pleasurable than cooking, and a whole lot less enjoyable than watching TV
-Of the 1,306 moms in one survey, 95 percent said the experienced guilt feelings associated with parenting, and almost half said that the guild only increased as their kids grew older
-Two out of three adults say that parents are doing a worse job than twenty years ago (p.29)

Why? The author who posits these statistics from various US journals cites the following to blame for the frenzy:

-new knowledge about child development and how much nurture, the way we behave, affects who they will become;
-parents wanting their children to excel so they enroll them in umpteen programs;
-more entrepreneurs creating more to sell to kids, including programs;
-more media on parenting and motherhood;
-financial pressures to meet all these consumptive needs;
-guilt that we’re working to hard and not spending time with the kids and;
-parents wanting to be liked by their kids instead of saying no.

This idea does have a spillover effect once we receive that autism diagnosis. Psychologists need to diagnose, we hire expensive agencies and specialized schools to teach our kids, then hire lawyers to fight expensive suits to get additional life-long funding as a so-called “support” to autistic children, we buy books, travel to conferences, fund research, buy ribbons and more. Autism is now an industry unto itself with a lot of snake oil salesmen. Buyer beware.

So, when discussing Quality of Life (QOL) for people with disabilities and people with autism may be skewed because our very own is compromised with the commoditization of own lives. Ascribing value to life then, or to the very definition of QOL is mostly an extrinsic, objective exercise based on market ideals.

Assessing QOL with objective models is not a sufficient way to analyze the well being of people with autism. A subjective view of QOL is required from the person with the disability. We may, as RDI does, define quality of life as “to get married, have relationships and have a job,” and prescribe interventions that seek to change the person to fit these goals. However, those definitions of QOL may not be the same from person to person, not to mention for a person who is different. The issue with commodity, therefore, is an external one which alienates those with autism currently articulating what QOL means for them. If we impose an objective value of QOL, under the umbrella of belief that people with autism are incapable of understanding, or further, somehow deceive themselves into thinking they are happy as they are, then we are not accepting of people with autism. If we insist as parents, researchers and teachers, that interventions are necessary to help people with autism learn, instead of looking to the environment as the source of handicap, then we are not creating a tolerant or supportive society. Further, we are not honouring the way in which autistic people can learn.

I strongly suggest, that as parents, we consider that we have to reconceptualize our view of disability, and autism specifically, by turning to those with autism first, for a start. I also suggest that our goals should not focus on interventions to change the person with autism, but rather, seek supports and changes in the environment to support the person with autism. “The extraordinary variety of ways in which people can flourish suggests a comparable variation in the impact of abnormal functioning, an impact that people with normal functioning, notably health professionals, are notoriously poor a gauging,” says Anita Silvers from San Francisco State University. “[She] contends that the distorting effects of treating health as an indispensable practical good will be greatly exacerbated by the growth of predictive genetic testing in the coming generation, exposing previously hidden health deficits in a large portion of the population. Silver urges that health be viewed not as a good with instrumental value for almost all forms of human flourishing, but as an intrinsic good, on that, like art, will have radically different values when assessed from different standpoints.” (From Quality of Life and Human Difference, p.17)

If society views people with disability as a financial burden, then society will not build the supports for the disabled, but instead will seek to cure them. Further, educational supports for children with autism will not be made in the schools or by society-at-large if society is waiting for that cure. Organizations and some researchers rather invest monies on cures and pills that can harm people with autism as a long-term cost-saving measure. With this current goal touted by many major autism charities, it takes the burden of responsibility to change and to support autistic persons off society. It also threatens to take away a support network of fellow autistics from current ones, comparable, in argument, to aborting all fetus’ of ethnic diversity, thereby robbing a future of variant culture, mores and tradition, leaving those currently in existence, alone. This, of course, is morally repugnant.

“Disability is not a condition or a property of an individual, but rather, an interaction,” state David Wasserman, Jerome Bickenbach and Robert Wachbroit in the book cited above. Treating disability as a condition or property leads to commoditization of life, and the medicalization of disability then becomes a natural extension to this. In making a prenatal choice, another arguable extention of this notion, I mentioned in The Difficulty of Knowing, that genetics counselors and doctors do not provide enough information regarding quality of life, because they themselves lack a definition with any reference from families or disabled persons who can help qualify it. Instead, I was pummeled with a variety of genetic factoids about which I knew nothing. In a matter of a week, I was expected to make a choice whether or not to abort without knowing anything – just based on whether or not I wanted to raise a child with a potential disability. In a society that does not value this portion of our population to begin with, where disability is assumed to be of lower quality of life, one can understand why so many abortions may needlessly occur. My feelings about this experience upon reflection is supported by Tom Shakespeare who “finds that stereotypes, over-generalizations, and dubious assumptions about the impact of impairments on quality of life shape decisions about testing and termination. But he believes the more important bias occurs at the institutional level, and that the debate over prenatal testing tends to place too much emphasis on individual decision-making. Just because of the importance and difficulty of the choices that individuals must make, society has strong obligations to ensure that those choices are knowing and voluntary. In order to do so, it must provide adequate accommodation and support for children with disabilities, and balanced information about raising children with disabilities for parents making decisions about whether to test or to terminate. Reviewing the relevant social science literature, Shakespeare concludes that society fails dismally in all three areas.” (IBID pp.19-20.)

The authors of this book contend that the World Health Organization (WHO), “belies its avowed commitment to equality in several ways: by taking cost-effectiveness as its ultimate standard for rating health systems, by ignoring inequalities among ethnic and socioeconomic groups, and by assigning the extension of lives with impairments lower priority based on a flawed methodology for assessing the impairments, one that relies solely on the judgments of health professionals.” (IBID, p.20)

When debating rights issues we first have to investigate this notion further and make note of the very prejudices that endow our current beliefs about disability and human difference. We need to begin to spell out the basics of how people with autism wish to be viewed and treated. We need to make corporations and leaders aware of the complexity and the fact that all people may not financially contribute, necessarily, to the global economy, and they still have a right to be supported. Worth, value and contribution to society can take many forms. Heck, the volunteers of the world make no financial contribution, and when quantified, would make for a trillion dollar industry (noted in Bruce Mau's exhibition). So conversely, we all have value and we all have something to add.

The dialogue about quality of life – the objective and subjective views cannot be answered quickly. A review, however, is essential to understanding the complexity and the richness of those lives, those which are disabled. We must do this because we are all..."worth" it.