Towards a New Autism Research

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Whole Better World
Autreat, May 2000,
Clay Adams

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

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

Book Review: Challenging The Myths Of Autism by Jonathan Alderson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why Every Minute Is Not Therapy (or a short case for why it shouldn’t be)

Filed Under (Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Contributions to Society, Critical Disability Studies, Discrimination, Inclusion, Research) by Estee on 08-09-2011

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

Compassion

Filed Under (Advocacy, Critical Disability Studies, Discrimination) by Estee on 17-11-2010

Below is a reading from my favourite author Milan Kundera excerpted from The Unbearable Lightness of Being.  It would have made (and now makes) an appropriate accompaniment to my essays of several years ago titled The Economy of Pity and The Mismeasure of Autism — the latter which was included in Wendy Lawson’s book Concepts of Normality: The Autistic and Typical Spectrum:

A Single Mom’s View of Autism, Divorce Rates and Stigma in the Pursuit of Love

Filed Under (autism, Critical Disability Studies, Disability Finances/Benefits, Discrimination, Parenting, Single Parenthood) by Estee on 29-07-2010

“Before you break something apart, it helps to know how it hangs together.”

 — a quote from SEED magazine regarding art and science and the contributions art can make before distilling the neurological nature of being human.

It helps to know what makes a marriage or relationship hang together. The manner in which we build a union between two people can be pinpointed from the moment it begins. Over time, I’ve come to believe that strong foundations for a relationship are built on honesty, sharing, trust, communication, respect, personal character and commitment. These attributes become ever-more important when we decide to start a family. I might suggest, as a woman with some experience, that a serious review of some of these attributes in ourselves as well our partners, and an agreement of some kind, is of prime importance before starting a family.

Instead we get swept up, probably because most of us are young, in the idea of what a marriage should be instead of looking at the practicalities of construction. Naively, we come to believe that having a baby is romantic and naturally, all we want to do is proliferate the romance. In an age where we are encouraged, and should to some degree, go with the flow, we may have swung too far. Perhaps we do not consider our partners in construction carefully enough because it seems too “business-like.” Yet real life seems to be that fine balance between the two. As the saying goes, all we have at the end are the relationships we’ve built, and might I add, maintained. In a society that values Individualism, it seems to me that many of us have forgotten that it takes a community to not only raise a child, but to also sustain us as adults, so we better be paying attention to how and what we build. As Thoreau said, “build [those] castles in the sky…” but it helps to place the foundations under them. It behooves us to try our best to ensure they are strong.

Let me clarify here that I am a woman writing in retrospect as I am now a single mother of an autistic child. I’ve seen that when relationships fall apart, we blame it on other things. No matter what, external factors will impact a life and a marriage — illness, disability, death and other unfortunate occurrences. We hear it in the marriage vows (for better or for worse, in sickness and in health), yet it seems few of us care to consider the meaning of those words which, in my view, can apply to our friendships and other types of partnerships. I mean, no one can really scoff at those marriage vows even if one doesn’t believe in the institution. We all want someone to see us for who we are, and to love us until the end. Yet, sometimes the two people who came together with the best of intentions cannot endure the stress and do not function well as a team when challenged. In an era of extreme autism fascination and fear we can be ultimately challenged. As such, it is also assumed, and often written, that autism is a main cause of divorce. The unknowing, innocent autistic child is then targeted by society as a result, and it is yet one more reason added to an exhaustive list of why we must cure and change the autistic child as quickly as possible. Instead of considering that all children are a test — that in fact, all of life is one big test — we yet again blame the autism.

I have always found the idea of blaming the autistic child for the deterioration of marriage as something unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might even in some small way be true. There can be more stress because our children have atypical needs that are not easily accommodated in our communities. In North America, we are still in the process of legislating what the rights of disabled (including autistic) people must be. We have acknowledged that the rights of autistic people are about thirty years behind of how we regard and grant rights to people with other disabilities. In other words, there is still a journey ahead.

As a parent also living in an age when governments do not understand autism and the accommodations autistic people need to contribute as autistic people, there is more stress when we have to fight to get our kids into schools, obtain financial support, acquire respite help, augmentative communication devices, social skills and vocational training and later, appropriate housing accommodations, access to community colleges and universities with aides and supports that allow our adult children to continue to learn and contribute. By default, we’ve become activists, advocates by no choice of our own. Daily, in some way shape or form, we always seem to be negotiating prejudice in order to get our children and our families what they need. Yes, it can be exhausting in the beginning. I believe all parents need to pace themselves for like life, the journey is long.

I’ve heard that some spouses complain about mothers (let me clarify that the bulk of writings on the topic seem to address the mothers) who take on such a role. “If only the child was “normal,” then the mother would be able to attend to her husband more often. I’ve also heard single moms of more than one autistic child claim that their entire identities are entwined in autism, and as you can see from the laundry list above, it is with good reason. Further, some families that are mixed with typical and autistic children also seem to experience more stress because the autistic child is held up against the typical one and there might be some unhealthy comparisons. As a mother of only one child, I have to consider that some of my stress may be alleviated by the fact that I know of no other way to live. I have no other child to compare mine against. I consider this one of my many blessings.

It might be true that some husbands (and this can also apply to mothers, I do not wish to target husbands, so let me clarify this here even if I do state either “fathers” or “mothers”) do not care to participate in the intensive initial learning curve of raising an autistic child. It is true that some partners bail and leave the brunt of the work to the mother. It is true that in the first years after a diagnosis, and in our new age of autism fascination and fear, autism required a lot of reading, research and self-enquiry. Yet, life evolves, our children mature and we move beyond that “crisis” phase. One can only hope that our partners will hang on until we get there. Still, blaming the mother for the failed marriage is an old idea — we’re either as cold-as-ice- Bettelheim- Refrigerator-Mothers or we are terrible wives. Misogynistic ideas flagellate us and the ideas run so deep they are tough to beat. While there are single mothers truly struggling and are in need of respite, access to services and financial support, I also suggest that these are the caregivers who should be at the top of the list for such support. For after all, it is true that if a mother does not explore herself and her own needs, she will not be able to give herself to her family.

I also think there are all kinds of mothers, those with special needs or typical children. Some are the ones always carpooling, always talking about their children at social functions — forgive me please if you are one of them for it’s your right, but it’s just not my style. Although I spoke a lot about autism in the early years as I tried to figure it out for myself, and I often write about my son on my blog, I do not always wish to talk about him or about autism and I never wanted a bucket full of kids. In short, I’ve seen more women of typical children get so caught up in their motherhood roles that I find it so ironic that mothers of autistic children get blamed for failed marriages because we get so involved in our “autistic” children’s lives! Indirectly of course, the autism, or autistic child is also blamed. In all of my years I’ve tried to always enjoy my passions, even if I’ve had to sometimes put them on hold at various points in my life. Even while my autistic child is a huge source of happiness for me, I recognize that in order to be a good mother, I have to explore and live my own life. I believe that by being my non-super-mom (hence the lack of carpooling) very basic self, I am setting a good example for my son. Mothers of autistic children are also professors and other professionals with successful partnerships and marriages and others are struggling to care for the children on their own while trying to make ends meet. Like everyone, we are also a diverse community. No matter where we are at, finding the balance is an art we seem to always be working at.

A new study debunks the incorrect divorce rate and some of the assumptions that we have mustered that belong to the myth. Dr. Brian Freedman of the Kennedy Krieger Institute found that a child’s autism “had no effect on the family structure.” In fact, he found that 64 per cent of children with autism belong to a family with two married biological or adoptive parents compared to 65 per cent of children who do not have ASD. Freedman’s study acknowledges that parenting an autistic child may be more stressful and it may put pressure on the marriage, which he found in past studies. As I looked back to reference this, I found one executed in the Journal of Autism and Developmental Disorders (Vol. 19, No. 1, 1989): Brief Report: Psychological Effects of Parenting Stress on Parents of Autistic Children (Wolf, Noh, Fisman, Speechly). What was noteworthy to me in this study was an assumption that parents felt that their own personal goals were delayed or forfeited (Kohut, 1966), disappointments with delayed developmental milestones (Howard, 1978), worry regarding future self-sufficiency (Wing, 1985; Wolf & Goldberg, 1986), and the unpredictable, ambiguous nature of autism as important sources of life stress that impose physical and emotional strains on parents exceeding levels experienced by parents of normal children (Bristol & Schopler, 1984; Korn, Chess, & Fernandez, 1978). Freedman seems to have used these assumptions when citing that parents of autistic children suffer a greater amount of stress than parents of children with Down Syndrome or typical children; that mothers report more depression and fathers deal with stress by distancing themselves and becoming less involved with the family. (Source: Kennedy Krieger Institute).

Yet, in an analysis of the National Survey of Children’s Health, data showed that other factors can contribute to divorce, “such has having a child with particularly challenging behaviors with and without autism [bold mine]. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point.” Freedman wishes to conduct more longitudinal studies to find out how relationships can survive such stressors and what factors may enable the successful marriage. Alison Singer, founder of The Autism Science Foundation agrees that it would be helpful to find the “net stress reducers,” for families, noting also that the 80% divorce-rate myth may have added to our stress as parents and marriage partners.

It might help to add here that Canadian researcher Lonnie Zwaigenbaum in his paper A Qualitative Investigation of Changes in the Belief Systems of Families of Children With Autism or Down Syndrome (Child: Care, Health and Development, 2006,32: 353-369) concluded that families with autistic and Down syndrome children resulted in a reconstruction of values, expectations and actually added to a sense of overall happiness and joy. His team noted that most families believed that their children improved their quality of life. I will concur. Having an autistic child, even with the challenges, has brought me down to earth and made me appreciate many more aspects and people that are currently in my life. My son Adam has been my most profound teacher in helping me see not only the realities of life, but in living with them to the best possible degree.

Still, I thought it really important to discover why so many people believe that families with autistic children in them, are subject to higher divorce rates. They seem to be based in our beliefs and fears, whether they are real or not. We are told many negative things when we first hear the word autism and the idea of having a difficult marriage is not a welcome message. As a single parent, I also have to consider what of those negative messages permeate societal thoughts and the potential for future relationships as society (and potential partners within it) believes that life is so hard for us that we do not have time for the pursuit of happiness.

We learned the extraordinary lengths we would have to take to help or “cure” our children — the strain on our financial resources and time — but the future, even with such investments, looked uncertain. When I consider stress, I have to account for some of the images I have had in my own journey, particularly the early ones. Thoughts like: thwarted dreams, a curbed schedule, shiny white hospitals with fluorescent lights, and spare cots (as seen in the neglected institutions of the 1960’s) popped into my head as I lay putting my autistic son to bed, his hair still baby-soft and face so sweet. The images did not fit with my reality, yet, I wondered how these haunted thoughts would effect the way I dealt with my son. Those images collide against the perfect Hollywood glam of serial daters and spouses with their perfectly coiffed children in gleaming black limousines. Let me quickly add that you will find me often blaming Hollywood for our warped self-images.

By taking a serious look at these narratives and images, it is possible to come back down to reality and back away from feelings of doom. Not only do I know my marriage did not dissolve because of my autistic child, but I became interested in the underlying fears that may prohibit some people from believing that future relationships with autistic children are possible. In other words, I think there is a correlation between our idea that autistic families must have higher divorce rates because,

– we believe we suffer more stress because we feel we devote much more time to the autistic child than the neurotypical child, possibly without considering the issues that many typical children have that can also put a strain on marriages and the outcome of all children is uncertain;

– we have automatically concluded without further inquiry into our belief systems, that single parents of autistic children have it tougher and therefore have less time for current or future relationships (as compared to families with typical children);

– and that our historical view of the disabled as asexual non persons is inherited in how we view ourselves as parents and human beings.

The stigma facing the disabled community still lingers. We see a person with real physical or cognitive issues, and a slew of ideas and images cross our minds. I find it helps to always catch myself in these moments of thought and question the immediately. It’s not that most of us really know anything about the disabled person’s life, for many of us have never had a family member or lived with a disability. History continues to pulse through our veins and when we view disabled persons, we think of institutions, hardship and poverty — not the typical attractive traits we think of when exploring sexual relationships.

In autism in particular, we are all too familiar with the head-banging narrative. It was the first thing we envisioned when we heard the word AUTISM. Whether our children were diagnosed at the age of two, three, four or beyond, that very word altered our perspectives of both our children, and our futures. I can think of no image associated with a word more powerful in my lifetime. It takes so much time and self enquiry to unravel the fear and begin to find that balance again. In addition to unraveling and reconstructing our expectations for our children, we need time to discover what we need as parents to live a full and “balanced” life. As a newly single parent who has spent two years thinking hard about this, I can think of nothing as important as taking care of myself and having an important relationship (one can be happy being single — everyone has to find their own path, of course) as not only setting the right example for my autistic child, but for my own happiness which is as much as my right to have as it is my son’s.

It is said that the most successful people in life are the ones who are most adaptable. We are put to the test time and again. We try to build strong foundations and sometimes the end result doesn’t turn out the way we expect. So we keep trying. I’ve given myself some space and time to create a positive atmosphere and peace around myself and my son. This painful time has been precious and with every day comes an awareness that life is neither perfect nor predictable. We cannot predict the outcome of the autistic or the typical child, as much as we would like to think that we can and for that reason I believe things are meant to fall apart so we can rebuild them again with more wisdom and a healthier outlook. I share this story in hopes that we can all exchange our experiences and become a little wiser. Today, we are so fortunate to have the benefit of more autistic adults showing us what they need to contribute to society. We have more positive examples to live by and this by its very nature gives parents more hope. I find it quite relieving to see that there is a sort of “normal” path of autistic development. We are made more aware of the stigma that influences our thinking and can choose to move away from it.

The outcome of divorce and lack of support can fall on single parents with all kinds of children. Yes, autistic children need more support in a world that doesn’t value them as they are. In a recent conference called Autism, Ethics and Society, based in the U.K., the introduction to the sessions read: “Autism is a common [italics mine] neurodevelopmental condition that has dramatically captured attention in the last decade.” While there is much concern about further stigma regarding genetic testing and other scientific discoveries, there is comfort in common-ness, commune and community. Might we be coming to a new decade where autism isn’t as scary and we as parents receive more moral and practical support (like getting into schools), that ease the mental stress that seems to going along with both marriage and single parenting? I definitely believe that along with new people that will come into our lives, this is the new frontier for Adam and myself. At least it’s my castle in the sky. I’m in the process of rebuilding the foundation underneath it.

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A little postscript today: After writing this, I received a note from Adam’s camp counsellors describing him. It says, “Adam brings charm to the senior 24 group. Like the gentle Snorlax Pokeman, he maintains peace with everyone and shows a love for nature. If it was not for him, we would have never found all the golden eggs.” All I can say is….exactly.

Is Having A Disorder The New Normal?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Changing Terms

Filed Under (Acceptance, Autism and Learning, Critical Disability Studies, Inclusion) by Estee on 23-04-2010

Here in Toronto, I sit on Inclusion Committees. My son has been included in a Montessori classroom but we are going to leave after June. The school gave Adam loads of acceptance and enabled him to bring his aide, his adapted programs, his computer laptop and the like. The school was wonderful in that it was a calm environment that had concrete Montessori materials for him to use.

We had to adapt his program, ourselves, while staying within the structure of the classroom. He worked alongside the other kids and the other kids loved him. He learned how to engage with them and they learned how to engage with him. It was very important at the time we made the move to a Montessori school that Adam be with peers and be able to learn to tolerate them, the noise, and being able to play and learn with others. It was the right move for him. My wish is that schools would provide more education about people with disabilities: how to be more patient, tolerant and accommodating, and there are programs in Toronto that are attempting to achieve such goals. Last night, I attended Inclusion Awards night in Toronto and spoke briefly with The Honourable David Onley (Governor General of Ontario) who is himself disabled.

It was a successful experience and I have to admit, we’ve not had any problems with our school choices like so many other families who must endure the public school system, the IPRC process and assigned E.A’s. In addition, too many “special needs” schools ironically turn down autistic children with behavioural challenges or children like Adam, who have difficulty talking. I understand that that is very difficult, heart-wrenching and it seems we sit on pins and needles waiting to see if we either get the luck of the draw or if we have to endure another heart-wrenching process as I have also been privy to it. This is the most unjust process I can think of as no child should be turned down from any school, let alone the “special needs” schools, but this is the reality right now. Here in Ontario so far, Inclusion is only as successful as the person who is leading the process within the school. A teacher is only as good who understands the child as a unique and whole human being, and is willing to go the extra mile. But for those of us who live through this daily, I’m not saying anything new.

Although I am thankful for our successful early years, our weekends were left struggling to find play-dates from many of these children. Adam always gravitates to the other students with special needs anyway, so it became easier to enroll him in social programs for special needs children. It’s a common story: like attracts like. We feel more comfortable with the people who may understand us and with whom we may understand, and we have to allow room for all of this in the Inclusion process. Adam’s school was a brilliant jumping board for Adam to graduate to the next level, so he will be attending a school that will be able to accommodate his learning needs more appropriate to his new found curiousity. Or so I’m hoping.

Inclusion is nascent in the Toronto community. Still, there are attitudes to hurdle, not to mention a reluctance to invest time, money and training, perhaps because these attitudes are not really up-to-speed. If a question I received yesterday from another parent with a child with another disability was any indication (“is your son violent?” ),one may begin to understand the many general assumptions that exist out in the world about autism and wonder if fear is the biggest barrier to Inclusion. I certainly don’t blame anyone for asking such questions — there are people with many challenges out there. Adam is not violent. He is affable, social (for an autie — he just does it differently but often craves being with others even if he may engage in the “Adam way”), and he wants to learn, even if he struggles with what appears to us like distraction (or should I rephrase that and say it is also us as the parents and teachers who struggle with it because it challenges us to have to learn and see the way our children might?). Adam is talking more now and he was approved for a new device which will enable him to communicate even more. He is bright, able in so many ways. He has a handicap in a world where his style of being is the minority, mind you, but this doesn’t stop him, or me, from moving ahead.

This is the first year I’ve engaged Adam in more special needs programs — for social skills, life-skills and general leisure. He is still Included in a “regular” summer camp, but Adam now needs a different kind of support as he grows into the world. I am very happy for him that he will be gaining these new skills and looking forward to his ability to help others, as I believe it is crucial in life that we all find our areas in which to swagger. In fact, as I’ve sat with it for a few days now, I’m thrilled. I still have no doubt that he will be able to do contribute and go on to further education in his future. It’s not an outrageous expectation: I’m basing it on the person I see in front of me who is utterly capable and who is a privileged boy in that he is being given two healthy, willing parents who enable opportunities for him in his life. I still work in Inclusion because I want to see more opportunities for Adam by the time he reaches his twenties. We have to work at all angles — both in Special Education and Inclusion. The trainings co-exist and are not exclusive of each other.

This lead to another thought I had this morning as I still read the many pleas for money for “Early Intervention.” I wondered why, after I’ve come so far in my own thinking, the term still bothers me to the extent that it does. So here’s my answer: Adam doesn’t need intervention. I may be lucky that Adam is an only child as I have nothing and no-one to compare him to except for my own childhood. I figure we have made our own normal. Our weekends are full — yes, we do visit friends and other children, we have programs to attend, concerts and plays to see — and yes, these have to be pre-planned (but then again, what family doesn’t organize a play-date?). No, I cannot drop him off and leave him alone in someone else’s house yet, but like all things Adam, he will do things his way and his own time. I could sit here and cry and bemoan that fact that he is not doing all of the “typical” things other boys his age might do, or imagine that he is somehow lonelier for it. But is he? He has no siblings to compare himself to. He is competent in our home, a burgeoning artist, musician and cook. He enjoys other children and will likely gain a long-time friend when he is ready. Like myself as an only-child, he has learned to entertain himself or play with me or spend time with his grandparents or much older half-siblings when they return from university. For us, our normal was early engagement and we grew into acceptance. For certain when Adam was two years old, I believed all this engagement would make him more “normal,” whatever that meant to me at the time. Six years later, I can see that our life is normal. It is normal to us and aside from our personal struggles recently with life transitions, I really love our life. I figure that one of the many gifts I might be able to give to Adam is my belief in this. All I have to do to believe it, is to let go.

The idea that one has to intervene still suggests that something is wrong. The other day, my best friend’s niece was on the A&E show called Intervention. Amy suffers from aneorexia/bulimia and is in serious trouble. The family asked for the show’s help in getting Amy the help she really needed. If not, Amy would die. To me, this is the seriousness of that word Intervention: it suggests that something is seriously wrong and is akin to the analogy that autism is like “a fate worse than cancer.”

It is not. Autism is our normal. Autism simply means that I needed to engage differently at those early stages of growth, not employ the tactics of early intervention. I wish I had had someone to tell me this when Adam was first diagnosed as it has taken me time to grow into my thoughts and words. Adam was not ready for the forty hours of ABA that was suggested back in those days, and we all know that even with all that ABA and all those promises, our children are still autistic.

When I hear parents complain about autism (see this blog on Kim Stagliano and her recent tirade on blaming autism for Aiden Johnson death), I can feel myself being sucked into a vortex and I do not see how that helps us become better parents to our children. Yet I suppose if certain parents truly feel empowered by believing autism is like cancer, if that gives them some kind of hope as the walks, marathons, runs do to defeat disease, then they will work and talk hard. They will use fighting-words.

I am of the belief that by fighting, one is defeating the child, not the autism. I am of the belief that by attacking the child from every angle like a huge dose of chemo sends a message to that child with a different perspective and manner of engaging in the world, that THEY are wrong. I see autistic children as they grow older with those beliefs surrounding them, absorbing the idea that autism is a disease and that “they are more than their autism.” What does that mean other than a denial that autism has truly effected the way one perceives and engages with others and the environment? Why not be proud of that and learn ways to take advantage of it?? I’m so sad to see parents fight so hard and then become so despondent.

I propose that while we are changing schools next term, that we again look at the terms we use. Had I intervened with Adam in an aggressive way, I truly believe he would have regressed into himself and perhaps with more aggressive behaviours. Instead, I propose we act gently. We have to challenge ourselves everyday with the notion that there are many kinds of normal in this world and while the world may not yet totally get it, it is through our use of terms and our actions that will enable the rest of our communities to jump aboard.

I am very uncomfortable using the term early intervention for assisting autistic children. I believe we have to work to change not only our attitudes, but our terms have to catch up. Perhaps we can use terms such as early engagement and early promotion of the different forms of play that we can engage autistic toddlers in the same respect and presentation we promote play for typical toddlers. Of course, the earlier we can do this, the earlier parents may be able to accept their autistic toddlers, and this supports everyone.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I do, I do, I DO!

My Kind of Welcome Mat

Filed Under (Art, Critical Disability Studies) by Estee on 20-01-2010

Some of you know that I have curated a few exhibitions. In 2005 and 2006 I curated two exhibitions in Toronto regarding autism in attempt to question stereotypes. On Valentines Day, I will be moving into my new home with Adam. It’s a cheesy holiday, I know. Yet, if I have to move out of the home my husband and I built together, let the love pour into my new one….very symbolic. My new home is about belonging.

The art I put in my home, as I see it, is an act of love. On a prominent wall in the entrance, leading up the stairs, I’ve placed some significant photographs (significant for me), which were in fact turned down by an organization that I proposed to do an exhibition with because “they may upset people.” I was told that, because most of the photographs were of nude, that this was the issue — not that they were both nude and disabled people. I would argue, however, that they would not likely turn down the Venus de Milo. She’s nude and she has no arms.

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I am building my own “outsider” art collection. You will find me always putting the term “outsider” in quotation marks because while it is a recognized term in the art community as a genre unto itself, the implication is that it is a genre on the margins of the art world because most of the art that was produced under this category is “self-taught.” Yet, it is a genre large enough to have created a category, but not quite significant enough, one could argue, to belong to larger art community that participates at Art Basel, Venice Biennale, Dokumenta, and at major private galleries an public institutions. I personally feel the attitude is changing. The term “outsider” has remained precisely as a symbol of how we might have formerly regarded the artists who produced the work as individuals who were relegated to the margins of society. I like to think that we have more respect for individuals today who were treated as “marginal” people.

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Disability, beauty and sexuality and the idea of acceptance and belonging are big issues when considering the essence of identity. On my wall, I have place a photograph of “Scarlett” in an rampaged room (I collected this photo from Europe), along with a series of Diane Arbus-type photographs by other well-known photographers. I compare them to the visionary Diane Arbus because she also studied families and circus people up close and challenged society to revisit ideas of what it means to be human in a time when such individuals she studied were sent to the circus for us to view as freaks. Diane used her camera to move in close, make us uncomfortable and like the freak show, she knew we wouldn’t be able to take our eyes away.

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When I put them up I thought of the upcoming house-warming and “renewal” parties (I like to call it that for now as I am in a period of renewal) and the way people are going to react to the photos confronting them in my front hallway, knowing how one institution already responded. Will this upset people; will they think these photographs are weird? I considered. Will it make them uncomfortable? For certain, I anticipate many conversations in my home about what it means to be disabled, what is beauty, what is identity and what makes a sexual being. On the one hand, I wonder about art in the home as typically people put up neutral things — should I have put up an abstract or a bunch of flowers?

Yet in my home, I have an autistic son. I live with difference and the beauty of his difference every single day. Not only do I want my son to see people with disabilities as humans — but beautiful humans and I want him to see himself as “beautiful,” if beauty be equated with value. I am often struck by how “beautiful” people in wheelchairs are still regarded more than average-looking people in wheelchairs. We often consider it “a shame” that “such a good-looking person” be confined to the wheelchair, as if the value of the person is now cut in half.

The people in these photographs are a mixture of beautiful and average-looking people with a leg missing, non-functioning legs and average-looking people with “mis”-shaped faces and bodies. I think to question beauty is important — from manufactured beauty to the beauty inside a person. Christine — the woman with one leg — is also reflected from a mirror on my fireplace mantel on an opposite wall. Everyday as I chastise myself for not being thin enough or young enough, I hope to be reminded that I am more than what I appear to be. I’ve advocated for Adam all of these years and all of these people, including Adam, have reminded me to be less judgmental of myself as a woman living in graceless times — where we carve ourselves under knives and lasers to become something “more beautiful.” I am not attempting to chastise the entire industry of prosthetics or plastic surgery because the industry has also helped a lot of people cope with events like breast cancer, burns and so on. But I hope that in raising the question we can all see how complicated the body has become. As a woman, I’ll admit this is a great area of conflict for me and my emotions can’t keep up with my head.

So, I had to question who else might put these works front and centre in their home (which is why I’m writing this post). It’s fine to look at such images at exhibitions and in book, but the home, where we manifest our identities may be something different. I’m trying not to self-adulate, because I found myself questioning. I know that some people will not understand and may initially feel uncomfortable (the precise opposite of what we try to accomplish in our homes as we want to welcome people to them). Across from the photos, by the way, sit two paintings that I purchased from Larry Bissonnette — a well-known autistic artist, and my two Jonathan Lerman pieces (also an autistic artist) are on the stairwell going down to the basement.

I have a series of thoughts and hopes, perhaps, as I put the work up. First, it will prompt discussion — some of it may be difficult, I understand. Second, I want to question stereotypes of not just disability but what is beautiful as we (especially me) spend many dollars and energy seeking to look more perfect and defy our age. And last, I actually want people in my home to let their hair down. I want the judge in everyone to disappear.

In my view, it’s the best welcome mat money can buy.

Restraint as behavioural tactic on CBC tonight

Filed Under (Acceptance, Activism, Critical Disability Studies, Discrimination, Ethics) by Estee on 08-01-2010

Tonight on The Fifth Estate we can watch the documentary Out of Control which addresses how youth and the mentally ill are treated for their behaviours by the use of restraint. Ashely Smith, once detained, committed suicide.

Yesterday, Boy Interrupted was aired about Evan Perry who had bi-polar disorder and committed suicide by the age of fifteen. “Bi-polar disorder,” says the family doctor in the piece, “is like cancer. It can kill. Some people survive.” Produced and directed by Evan’s mother Dana Heinz Perry, we see the family’s genetic history of the disorder while also understanding the mother’s profound love of her child.

It strikes me as odd when I hear stories, sometimes, of people saying to parents of disabled children that, if they had died, that it’s somehow a “relief.” For certain, watching Boy Interrupted made me realize my love for Adam, autism and what a travesty it is that we complain so much about the so-called “problems” we have instead of viewing them as opportunities to make the world a more accepting place. Yes that takes patience and disciplined work. While I know “making the world a more accepting place” is becoming an over-used phrase, thus coming to mean nothing, our work to understand mental illness and disability and de-stigmatize both is valuable and worth it.

We don’t seem to value people who have disabilities, depression, or any other physical illness very well. We spend more money and time putting people away rather than investing in them. Charity without thought and engagement is particularly concerning as it is a way of avoiding real issues. In the Buddhist sense, I read something that the 17th Karmapa (thus ordained by the Dalai Lama), who stated about generosity:

True generosity requires some wisdom — a clear understanding of ourselves who are giving, what we are giving, and to whom we are giving. If we use our intelligence, then generosity benefits both ourselves and others. We should not give just for the sake of giving or from an old habit. Further, in the process of giving, we should not become distracted, for losing our focus diminishes the scope and effect of our activity.” (Shambala Sun, January 2010, p. 52)

Many other Western philosophers felt the same about charity, particularly Nietszche who believed that charity was given by the rich to make them feel superior. It is also a way to avoid engaging with real problems and people and thus pretending the problem isn’t ours, but we are good people to at least do something about it. While charity can be helpful, it can also be a declaration: go away — I don’t want to deal with it, or, thank God it’s not me.

When we watch The Fifth Estate tonight and think about people like Ashley Smith of Evan Perry, I hope we can all try to think differently about all different kinds of people… and how we “treat” them.

Do You See?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Barb, Tim and Annie Farlow and the quest for justice

Filed Under (Critical Disability Studies, Discrimination, Ethics) by Estee on 30-11-2009

What does the story of a three-month-old baby with Trisomy 13 and her death have to do with the rights of all disabled individuals? It’s a question that Barb Farlow and her husband Tim have raised for the past several years, and today, the loss of their court case was featured in The National Post.

I’ve known Barb for several years and supported her after we shared numerous emails a couple of years ago about her daughter, Annie. Only because of a difficult year in my own life was I unable to support Barb more actively in her quest in 2008. Barb with her husband Tim, have pursued justice for their three-month-old relentlessly. Not only has their struggle symbolized a deep respect for the life of their daughter, but for the rights and dignity of all disabled individuals.  They have argued that  because Annie had Trisomy 13, hospital staff  executed a DNR from a subsequent illness without her parent’s permission. The Farlow’s, having taken great pains and effort to ask questions and pursue the case, have raised the question about how we value the life of disabled individuals, no matter how severe their disability.

Noreen Kelly wrote in her piece Crusade for Change:

“Most infants born with Annie’s genetic condition die shortly after birth; few live past the age of 10. Despite these odds, Barbara and her husband Tim decided, after much research and deliberation, that the right thing to do, for them and their family, was to give Annie a chance and to make medical decisions for her in the same way as a child without disabilities. The Farlows were assured that Annie would be treated like any child, and that if surgical considerations arose, they would be discussed and a decision would be arrived at mutually with the physicians.

Annie was born full term and received excellent supportive care at a Canadian hospital for the first several weeks. In August 2005, when she was not yet three months old, she suffered episodic respiratory distress. Annie died within 24 hours of arriving at the hospital. At that time, her parents believed that she would not have survived surgery and that her death was natural.

After obtaining the medical records and discovering the shocking facts of Annie’s last hours, Barbara and Tim Farlow made an exhaustive effort to seek answers and a resolution with the hospital. When this effort failed to yield much beyond an insincere apology and token, ineffective plans, they believed they had no choice but to sue the hospital and two doctors involved. The allegations included practicing a policy of non-treatment for children with certain genetic conditions and secretive euthanasia. Annie’s story is a multi-faceted case including allegations of violation of civil laws of consent and violation of international human rights laws, including the Convention on the Rights of the Child.”

Barb and Tim loved Annie deeply — that is evident from the emails I’ve shared with Barb. As a mother with a special needs child, though, I also feel deeply indebted to her, her family and to Annie as they have helped to raise awareness in hopes that more disabled people everywhere will be granted the same “net worth” as those living without disabilities.

This Lovely Life

Filed Under (Critical Disability Studies, Writing) by Estee on 24-11-2009

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There are some things that silence me for a few moments. The death of a child, the poignant line. Vicki Forman’s This Lovely Life: A Memoir of Premature Motherhood does both. About the premature birth of her twins, the death of one child and the survival of her son with multiple disabilities, Vicki must navigate life’s toughest challenges. Just the first paragraph alone will be enough to make you gasp, sit silent and want to read the rest of her book:

I learned about grief during this time. I learned that no matter the true temperature, grief made the air crisp and cold; that it caused me to drive slowly, carefully; there was very little I could eat. I learned that I didn’t notice things until they flew out at me and that most stories and books and news articles were unreadable, being accounts not of the events themselves, but of me. Of what I had lost and would never have again, of what I had once allowed myself to want, the things I used to love. Of small consolations no longer available. I learned that my heart could stop and start a dozen times a day and that my throat felt so sore and tight I often had to swallow air simply in order to breathe. The world receded; everything took place in slow motion and was viewed as if down the wrong end of a very long telescope. So much was unfamiliar that if I was asked my name, I had to think for long moments. ‘Grief is a visceral process of disengagement,’ a friend said. In my grief, old versions of disembodiment became a cruel joke. You thought that was bad, not being able to walk into a roomful of strangers without disassociating or turning remote and distant? That was nothing. Try this. Try heart-stopping, immobilizing grief.” — Vicki Forman, This Lovely Life, Houghton Mifflin Harcourt publishers, 2009.

Tom Bissell, who writes the forward describes Vicki’s journey well: “She does not claim she is always correct; she sometimes expresses anger at certain doctors, and she occasionally behaves in ways that some readers may find appalling. But just as this is not a depressing book, it is also not an angry book. It is a book filled with love and wonder — enriched by the kind of grief that those of us who are not parents cannot imagine and those of us who are will not want to.”

A Response to Prof. Guy Dove on Wendy Lawson’s Book

Filed Under (Acceptance, Activism, Critical Disability Studies, Discrimination, The Joy Of Autism) by Estee on 22-10-2009

I have come across Guy Dove’s review of Wendy Lawson’s Concepts of Normality recently (after being away for a while), and have to defend our positions.

Wendy Lawson’s book is about regarding individuals with autism with respect and dignity and questions our idea of what is “normal” when dealing specifically with autistic people. It is a wonderful thesis based upon how society views “normal.”

Of the “guest author’s” Dinah Murray and myself, Dove states:

The guest authors, on the other hand, seem openly hostile to such parents. Murray sarcastically remarks, “Some Others [members of the typical population] weep and moan and deplore their autistic child’s existence; they wallow in self-pity and congratulate each other on how Truly Dreadful it all is.” This statement illegitimately paints a diverse group of people with a broad brush and seems to be little more than a mean-spirited attempt to silence critics. Klar-Wolfond is not much better. In her discussion of the admittedly questionable practice of using scientifically unsupported biomedical therapies, she offers the following rhetorical question, “And to make them what? — better at maths, quicker on the sports field, or well-mannered?” This is doubly insulting to parents of children who have tried such therapies. First, it belittles their concern. The suggestion is that parents are merely trying to get their children to “act normal” when in fact they are often trying to ameliorate severe challenges with respect to communication and social interaction as well as other difficulties including debilitating anxiety, painful gastrointestinal problems, insomnia, and even violent behavior. Second, it denigrates their reasoning. Many parents who try such therapies agonize over their decision. Although some of these therapies have potentially harmful side effects, most do not. When Klar-Wolfond lumps together treatments as diverse as supplements and detoxification therapies, she is being both misleading and unfair.

To me it is a response not terribly unfamiliar. Dove discounts Dinah’s perspective of being an autistic individual herself and myself as also being a parent who “agonizes” over decisions. It is precisely to that point I think worthy of addressing and why I wrote the piece in the first place.

Parents of autistic children are being eaten. A plethora of information does not constitute proof of what causes autism or what may assist with the symptoms of autism, and even those symptoms may not be a direct cause of autism but autism may cause a more heightened reaction to an ailment. Come to my house when Adam has a cold and instead of a tired child, he may be running around the house.

Yet the rise of speculation has lead many (clinicians and those in the medial profession included, and conversely thanks to the researchers who have endeavoured to provide the real proof to many speculations out there) to sell their products to the risk and danger of the autistic child, feeding upon the desperate worry of parents – and most of the time these parents are new to autism thus more open to trying anything to “helping” their autistic child recover.

I can’t help but chuckle and Dove’s choice of words. “Hostile” is a descriptive word typically ascribed to women who tend to take a critical stance. The hysterical, hostile woman is no more a stereotype than the idea that autistics are less worthy and in need of a cure. Yet Dove, to be fair, is of the mindset, it appears, that these remedies are somehow safe and that parents are only trying to make the best choice. It is here where I think he misses not only the point, but an opportunity to engage in a discussion of how we come to push unproven remedies that risk the safety of our children. The very idea that our children are “not normal,” is the premise for trying to recover them, which is why Dr. Lawson chose the guest author essays for her book. The attempt, by Murray, Lawson and myself, is to identify this preying upon parental worries, not demonizing parents. Yet all of us have to step back and take a close look at what we are putting at risk and why. Further, Dove’s defense of parents instead of the autistic people who are much more vulnerable is sadly typical in our age. It is this stereotype we are challenging and we need to point out the irony of critiquing the view of the autistic person who implores a different view.

Yes, all parents agonize over their decisions. Where is the mechanism by which quackery is separated from scientific proof? As a parent, I can relate to the agony of putting my child on ANY medication (and this is NOT related to his autism but to his overall well being and health). The non acceptance of autism as a way of being, which is precisely Wendy Lawson’s point, has driven many parents to put their children on hundreds of unproven remedies at the same time.

The question is not hostility, Professor Dove. It is a question of having a critical mind precisely when emotions are the driving force behind the autism “hysteria.” For any parent or autistic person willing to engage in this discussion, we are in turn called “hostile?” Have you witnessed the hostility by non autistic parents against autistic individuals who are trying to be seen and heard?

I can tell you as a parent and a friend to many autistic individuals, there is a great deal of agony, indeed. The agony is in pushing them to recover from autism, not recover from stomach pain. Whether the two are linked, no one can really say. The evidence is still very anecdotal. Clearly, that pain should be remedied, but not at the risk of administering hundreds of medicines simultaneously in order that our children can act more “normal.”

I gather being critical is less important than putting our children’s health and safety at unnecessary risk. As for Adam, I couldn’t bear seeing him in pain. Of course I would seek counsel from his doctor and endeavour to remedy his pain. It would be no different if I had a non autistic child. The point is autistic children are being put at much higher risk precisely BECAUSE they are autistic.

Disability Studies Online

Filed Under (Critical Disability Studies) by Estee on 20-08-2009

Critical Disability Studies is a growing field of study which studies the history of disability and contemporary disability issues in the humanities and the sciences. If you do not have the time to attend full time studies, there is now an online option:

http://www.cds.hawaii.edu/main/ads/certificateprogram/

http://www.cds.hawaii.edu/main/downloads/news/2008_2009/pdf/DistanceLearningCourses.pdf

I can personally attest that the study is eye-opening and fascinating even if there is no person with autism or another disability in your life.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.