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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Monday, July 10, 2006

 

The Learning Curve of Acceptance

The Joy of Autism: Redefining Ability and Quality of Life is an event that will take place during the month of October and organized by The Autism Acceptance Project. The event is organized around a group exhibition of international autistic artists, Larry Bissonnette and Jonathan Lerman, and Toronto artists, Michael Moon and students from the MukiBaum Treatment Centres. In addition, lectures around the issues of autistic ability and what constitutes quality of life will be explored by scientists vested in research focused on autism ability, clinicians, autistic people, and parent authors – the latter who will relay their journeys to acceptance of autism.

The exhibition not only seeks to confront popular and misconstrued ideas regarding what it means to be autistic, but also, will ask “what is art?” The elite art world is replete with categories and genres. As such, it has classified the work of autistic artists as “Outsider Art,” “Naïve Art,” “Art Brut,” or “Raw Art.” In fact, the terms are referred to as self-taught art, not belonging to, or informed by, another genre. Tom Sherman of Canadian Art Magazine, states that the obligation of artists is “to find the differences they need to distinguish themselves in an era when similarities rule…The artist has a role to play in our society and that role is to remind people of the value of difference.” He was not specifically talking about art executed by differently-abled people. He was discussing art in the context of a society that “craves conformity and order.” He also makes the “what is art?” question a little more difficult when he states, “There are artists, and there are artists. Creating the appearance of art is easier than making art.” How does the art of self-taught artists who achieve Sherman’s obligation of reminding people of the value of difference – intentionally or innately – fit in? Is this the sole premise – intention to make art – upon which art is rendered valid? What about compulsion? This will be investigated in the exhibition as well as seeking to understand differently-abled people in the name of de-stigmatization, and acceptance through understanding art as human artifact. The event doesn’t seek to draw conclusions, but to raise more questions.

Through art and a lecture series, we can try to define acceptance. Acceptance doesn’t mean acquiescence. It doesn’t mean that we do not foster skills in our children that increase competency and rest on our laurels as parents. On the contrary to passivity, acceptance is a very active process. It means accepting autism as a way of being, and not conducting therapies that seek to “normalize” an autistic person. This is the fundamental difference in the politicized autism discourse – to conduct therapies in order to “normalize” the autistic person, or to teach and impart skills.

Acceptance means accepting the abilities that can enable an autistic person to succeed in the world as an autistic person. It means seeking ways to educate an autistic person and to help each child fulfill his or her potential. It means creating inclusive opportunities in schools and in the workplace that actively adapts education to meet the learning needs of the child. It means supporting autistic people in areas that they want and need extra support. Many of the autistic adults who have written to me and who I know personally -- who cannot live without assistance -- state that they would not cure their autism despite the challenges that autism, or being different, brings. As a society, we have to listen carefully to these messages and what it means when we study causation and advocate for cures.

The term acceptance is co-opted by many organizations that continue to purport therapies that seek to normalize the autistic person as the final goal. Many organizations still state that autism is an illness and a condition to be cured. This is not acceptance or part of the autism rights movement. As a society, we must continue to be rigorous in what messages get mixed in with acceptance. We must stay aware as to which organizations are lead largely by non-autistic people, who may be presenting autistics as token figures rather than as active participants. Some autistic people have referenced treatment of autistics akin to how the Canadian native community has been treated – with decisions being made for them by non-native Canadians. As the founder of a new autism organization, a non autistic person myself, I’ve had some recent share of scrutiny regarding board and advisory members and the way TAAProject presents itself in addition to the speakers it invites to participate. As it is still a new organization, the board will continue to grow and it will actively seek autistic members, speakers, contributors, advisors, audiences and artists.

It is important to acknowledge that acceptance is also a learning curve. I feel that the learning should never end for all of us. As a mother of an autistic son, I feel that working together – both autistics and non-autistics - is an effective way to change the stigma attached to all “disabled” people. After all, if we believe that we as humans are to all be accepted and supported for our differences, and we wish to create an inclusive and diverse world, we have to debate this, learn to cooperate, and build the important bridges.

That said, it is also important to disagree with the aim to find areas that we can all find in common, with our differences. It is not fine for one part of the population to consider autistic people ill, a tragedy or to impose cures that they do not want. There are also autistic people who disagree among each other about “treatments” and education, about the nature of autism, about challenges. The community is as diverse as any other. Some are militant in their advocacy approach; others are more genteel and persuasive. It’s all communication style, and all of these voices are part of the discourse.

Therefore, there are many autistics who are representatives of the autism community, a community that will forever remain as diverse as the world-at-large. The autism discourse is privy to a variety of perspectives about what it means to be autistic. So long as we respect one’s right to exist as they are, is there not value in many different contributions to the autism community? All of us must take an active role in the process and acceptance of autism/autistic people through the means I am attempting to describe here.

Will science conclude the ever-lasting question about the cause of autism? Can science completely level the equality field? Can it also destroy it? Or can it simply help us understand autism in a way that ironically, society might be finding out for itself through ethical questions. Are we paying enough attention to the ethical issues in the context of science? In the end, even in science, there are no absolutes. Only more questions.

Many arguments are made in the name of “autism acceptance.” It may look and sound like acceptance, but that doesn’t mean that it is autism acceptance. For this reason, rigor is required by all of us. Are large organizations that espouse a cure for autism, who still continue to taut autism as an epidemic, who present scientists without a credible background, being real or honest when they in turn say they “accept” autistic people? If organizations do not enter this active and sometimes exhaustive process, do they have a right to advocate for acceptance? Conversely, can we consider the adaptation of the term the first seeds to a conversion of real acceptance? Further, is it the honest intention of some of these large organizations to really achieve it? Can autistic people have an affect on this process? So, the inherent complications in using the word should be evident. If we advocate simply for acceptance without accepting criticism, are we honest advocates? Are we going to stumble and make mistakes? Most likely. But let us take responsibility for them and own up to our words and deeds and act to change our aims. It won’t happen overnight. It can happen over time.

Conversely, both non-autistics and autistics must be careful in how we regard each other as human beings. That must be the platform upon which autism rights and acceptance must be debated. Let us not engage in character assassinations that will not change minds. We must presume human decency in all people as much as we need to presume competence in autistic people. When actions, words, or intentions do not express that decency, then we have a right to speak up.

Perhaps idealistically, I desire a de-segregation of the autism arguments which create greater divides among humans. I will continue to hope for common ground. At the same time the divides are paradoxically important and inevitable. The pendulum swings from one extreme to another, and proverbially speaking, acceptance and de-stigmatization will hopefully enter into mainstream consciousness. I am also against discrediting all parents as “wrongdoers” as it turns away those who are ready to accept the autism rights movement, and the learning process, without acknowledging the different points they may be along the path to acceptance (presuming human decency). Parents who engage in behavioural therapies may not yet fully understand that autism is not a behaviour and behaviour does not define a person. That said, autistic people must understand that there are many parts of many teaching methodologies that work, maintaining the focus on imparting skills, not in correcting or normalizing behaviour.

So, the messages are politicized, and many parents who are struggling with acceptance, also need to be accepted, morally supported, and must continue to find ways to teach their children. We do not wish to drive these parents away with misunderstandings. Parents are the anchors in an autistic child’s life as they are in any child’s. We want to empower parents with strength, information, choices and opportunities for their children.

The Autism Acceptance Project acknowledges the difficulties of the autism rights movement and the philosophical divides. It does however; believe that the divides are inevitable and important. Research is important. This ethical discussion among all of us is critical right now. TAAProject believes that it is important for many voices to be heard so that the bridges to rigorous acceptance – not token acceptance – can finally be built. It above all believes in equality of all individuals and that all of us, no matter how different, deserve to be regarded as able individuals, with the right to be educated and to contribute to society. Governments and educational institutions need to take responsibility to support children and families, and to provide inclusive opportunities for all autistic and “disabled” people. We must also acknowledge specialized schools where inclusion is not possible at various points in a person’s development. There is an opportunity to foster tolerance in all future generations – start now and start young. All autistic people deserve no less, and autistic families deserve support.

In experiencing this difficult process by organizing The Autism Acceptance Project, I still believe in the Joy of Autism because I believe that there is good in humanity, and that acceptance, support, and understanding can be achieved. As a parent and a curator of art, I studied the works of autistic artists. I came to understand the one thing knew innately about my son and about autism itself: that what the “experts” were saying about what autism was, wasn’t necessarily true. That innately, I knew that my son was capable and indeed a gift. There is ability, there is brilliance, there is depth, there is emotion, there is grace, there is humour, there is sensitivity, there is love, and there is incredible perception and understanding in many autistic people. Autistic people are not the sum of their behaviours. Behaviour is a communication, it is part of perception. The exterior often fails the interior world of most of us. For most people, autistic and non-autistic, effective communication is very tricky.

Most of what I have come to know as autism, I have learned from my beautiful son Adam. Then, through the art that stands alone -- with or without autism -- I wanted to show the rest of the Toronto community what exists and what is possible.

This event celebrates autism and autistic people. It is a living, breathing, thinking event that is growing alongside us all.

For more information see www.taaproject.com.

4 Comments:

Blogger Kristina Chew said...

It's an ongoing journey, isn't it----I look forward to each new step of learning about Charlie and, in the process, of how little indeed I know.

2:52 PM  
Blogger Estee Klar-Wolfond said...

Yes it is. And I thank everyone who has contributed to my own journey -- all the voices, all the frustratiosn...all have been valuable.

11:43 AM  
Anonymous Camille said...

Estee,

I just want to add that I think it's great that you are able to bring the best in autism science to be a part of "The Joy of Autism." The truly good science brings joy to the discussion of autism, it is finding proof of the superior abilities in autism that have been terribly shunted aside or assumed to belong to only a few autistics. With a deeper and more precise knowledge of autism cognition, the way the mind works in autism, we can see that the autistic brain is awesome and a joy to behold in action.

The tracings of the autistic hand left on paper are a reflection of the activity in the mind that is not so easily influenced by things like "behavioral therapy." Art (incluing dance, poetry and music) is a way for autistics to find and experience the sometimes profound joy in their autism.

1:34 AM  
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