Single Parents of Disabled Children: Some Inspirations Today

Filed Under (Single Parenthood) by Estee on 07-01-2009


I will be writing much more on this topic in the weeks to come — from the added responsibility of mothers of disabled children, never mind the challenges on the resources of single mothers. Not only is there the stigma of divorce to contend with, or the cancer I had this year, but also living in an abelist world. Families of disabled children face constant stigma and marginalization. 

Pack it all in to year 2008 for me and I’ll tell you I’ve had a lot to bear. No friend of a typical child will understand the densely packed isolation that parents like me can feel. Thankfully, I’ve nurtured close friendships, but as a writer, I feel the need to articulate yet another injustice that hits many of us squarely in the face. If I don’t talk about it, it’s like writing with the big white elephant in the room.

I am doing research on the hidden oppression of mothers of disabled children in not only a male-dominated society where despite a women’s rights movement, still divides labour in traditional ways, but as mothers of children who must virtually give up all of their time to advocate for their children day in and day out for no compensation. The bulk of caring in general is the responsibility of the mother and the amount of work and dedication required to raise a disabled child leaves little left in the name of our human and other resources.

As I’ve always said, Adam is my greatest joy. I would not replace him for anyone in the world. Yet, I encounter so many barriers to living full and peaceful lives with autism. Sometimes we live proudly because many of us do not want us to do so. They want us to complain in order to get rid of autism and autistic people. We will not do that.

Other times, we live joyfully, because if you look at our faces and videos, we just don’t care what others think, and we really do have a nice time together. Yet we must discuss social inequities. It stands not only for disabled people, but also for the people who care for them and stand alongside them, as I do with Adam. In keeping with the incredible power and strength that Adam has gifted me with, I found these inspirations today before my other essays come on the real costs.  Estee and Adam celebrate no matter what comes our way. It comes from Single Mothers Disabled News:

 

Editorial: Ten Commandments of Single Parenting

by Leilani

Thou Shall:

    I. Give thyself credit for being a worthy, important, competent person.

    II. Congratulate thyself for making the best decisions you could under very difficult, stressful conditions.

    III. Compliment thyself for trying hard to overcome great hurdles placed in your path.

    IV. Bless thy children for the challenges they present so you will grow stronger and even more competent.

    V. Bless thy children for the moments of unadulterated joy they will sprinkle in thy life and for loving you undconditionally.

    VI. Open thyself to new, rewarding adult relationships, because to devote all thy energies and time to your children is unhealthy for both them and you.

    VII. Look toward new and increased responsibilities as an opportunity to include thy children in family planning and tasks so you can watch them become more mature and more capable.

    VIII. Offer thyself for some neighborhood and/or community efforts because it will help you grow and more importantly will be an important model for your children to follow.

    IX. Always remember that harsh, sharp words huled at thy ex-partner in anger are like painful barbs that, more often than not, wound and sear the innocent children more deeply and for a longer time than they do the one for who they are intended.

    X. Look into the mirror at least once a day and say to that inportant, competent, relevant person looking back, “I am okay, I can do it.”

Has Acceptance Really Progressed?

Filed Under (Critical Disability Studies, Family) by Estee on 07-01-2009

The Convoluted Meaning of Acceptance in 2009

Autism, like many other mental disabilities, is mostly referred to as a parent’s biggest burden and disappointment. Most of our Canadian autism organizations, wanting to be “non partisan” want to express the fear and anxiety that parents face, while also now advocating for acceptance and hope and for a better life for autistic people.

There is a benefit and a problem with advocating for both. One the one hand, it opens up new avenues for parents to consider the possibilities and rights of their child and their families to be included and acceptance regardless of disability. That can strengthen and empower families.

On the other hand, advocating acceptance, while still starving kids or giving them unsafe “treatments” is antithetical. Acceptance is not acquiescence, but does not mean subjugating autistic people to unfair and dangerous treatment such hyperbaric chambers, segregation, behavioural intervention as a sole educational method, and other unproven medical or non medical treatments. While it is encouraging as a founder of The Autism Acceptance Project to see that people really love their children, it is still puzzling why people do not understand the difference between acceptance and why the “cure” does not embrace acceptance at all. We do not accept disability, still, here in Canada and yet we don’t want to seem like bad parents. So, we get lost in the sea of language that in the end means nothing at the end of the day. We don’t want acceptance to mean nothing. We must never dilute its meaning.

Between 1870 and 1930, Western society changed their view of children from “objects of utility” to exclusively emotional and affective assets. In 1920, Canada was one of the strongest proponents of ‘mental hygiene” and eugenics. Dr. Helen MacMurchy was appointed the first chief of the Child Welfare Division of the federal department of health (Clarke). In 1917, Bertha Winn, head of Victoria’s special schools, stated the following in an address to the friends and members of the Women’s Canadian Club at Victoria’s Empress Hotel:

“The histories of thousands of these cases [of mental deficiency] reveal the tragic and pitiable fact that unless special provision is made for their custodianship earlier in life they will find their way into …crime, pauperism, vagrancy, prostitution, and general indecency…All mentally defective persons are antisocial in the sense that their presence in the community means disruption, disorder and dependency. They are the running wounds of society, infecting it and weakening its vitality, placing blight upon each succeeding generation. There is only one way to deal with this stupendous evil, and that is in checking it at its source – segregating all cases of mental defectiveness from the normal population.”

By 1925, the Legislative Assembly appointed the Royal Commission on Mental Hygiene to combat the perceived increase of mentally deficient individuals which lead to the ultimate passing of British Columbia’s Sexual Sterilization Act in 1933. It behooves us to look at our Canadian history to know that we are not innocent in the segregation, maltreatment and incarceration of disabled individuals — that it didn’t just happen in the United States and in Europe.

The lines between social and economic policy back then were blurred and mentally “deficient” children were considered an economic burden while other children were considered “priceless.” Such a comparison was made at the birth of the Dionne Quintuplets in what Mariana Valverde argued that the girls were victims of what she called “fractures in social regulation, a phrase she used to describe the processes by which social issues and problems were shifted from the expected regulatory category (such as race) to another (such as gender), depending on time, circumstance, and individual points of view.” (Clarke) Valverde argued that Ontario provincial government defined them as an economic entity and more specifically, as a resource that was to be administered to ensure the best possible revenue returns for the province (Clarke). While they were portrayed to the public as “models of childhood, in the eyes of authorities, they were no more ‘children’ than Mickey Mouse is a mouse.” While children on the one hand were sentimentalized and protected, children with mental disabilities were overshadowed by their classification as “defectives.”

In autism politics today, the virulent debates over precious children continue –many organizations argue that is an autistic child’s right to “medically necessary” ABA treatment in order that they behave less autistic — precisely because children are precious and must there be “saved from autism.” Others still refer to the blight of autistic people on society and their economic burden. If they are not saved or recovered or cured, they will continue to be disruptive and dependent. Many other autism organizations will argue that because they value and love their children, they will do anything – anything unproven and possibly dangerous – to save their children from autism. The lines between loving, valuing and accepting children, no matter what disability, and “recovery” and “cures,” as a display of love are unnervingly blurred.

It is interesting that the span of one hundred years has not changed the way we view and display our love for our children — no matter under what auspices. The same existed during the eugenics era here in Canada as well:

“Although the BC government increasingly ‘demonized’ mentally deficient children, it would be wrong to believe that they were totally dehumanized or that all members of BC society, professional or lay, agreed with and supported the authorities’ views and treatment of these children. Indeed…many mentally deficient children were dearly loved by their parents and protected by their communities. In a number of cases, individual parents and whole communities were willing to go to great lengths and expense to ensure the well being and freedom of their mentally deficient members. Equally, some doctors and school board officials openly questioned both the growing public hysteria, fueled by the rise of eugenics, relating to the supposed threat mentally deficient children presented to society and the provincial government’s policies designed to combat this ‘peril.’” (Clarke)

“In fact, some officials argued that these children did not present an imminent threat to society and that wherever possible, they should enjoy the same rights as did normal children. In other words, while many individuals, especially in the BC government, attempted to demonize children defined as mentally deficient, many others sacralized them.” (Clarke)

Terminologies such as “high grade mental deficients” or low grade were also employed during that era to determine human value. The point is, we have traversed one hundred years since the eugenics movement spread like wildfire throughout Canada – where immigrants were turned away for any mental disability, when people were sterilized, segregated and incarcerated in institutions.

Today, we are still fighting. Fighting over misunderstandings between high and low functioning classifications of people and severity and not getting much farther than we did one hundred years ago. Mentally disabled people are still being undervalued and mistreated. We must question the purpose these classifications and the identification of autistic people in general. Parents want to adore their children — as long as they are as normal as possible — and will go, in the name of love at any length to do so — no matter what the cost.

Educating, including and accommodating autistic individuals in society without the classifications and current Canadian surveillance programs is real acceptance. Parents who accept their children still go to great lengths to advocate for their children in a society that continues to put up barriers to inclusion in our schools and communities. It is still exhaustive work, and work that needs much more support than it has been given. Many of us who accept our children do not wish to be “surveiled.” We just want to live as we are in peace, and learn and contribute like everyone else.

As long as we insist on classifications, identifications for the sake of putting people in behaviour treatment and normalization programs, we have simply not evolved at all. So let’s all take a harder look at what we really mean when we accept our children, autism, and people of all disabilities.

—-

References:

Clarke, Nic. “Sacred Daemons: Exploring British Columbian Society’s Perceptions of “Mentally Deficiant” Children, 1870-1930 in BC Studies, 144 pp. 61-89.

Mariana Valverde, “Representing Childhood: The Multiple Fathers of the Dionne Quintuplets,” in Regulating Womanhood: Historical Essays on Motherhood and Sexuality, ed. Carol Smart (London: Routeledge, 1992), 119-46.

Joy

Filed Under (Uncategorized) by Estee on 06-01-2009

Tagged Under :

Thanks, Bev, from Asperger’s Square 8 for writing this post, CAGES. She uses my blog as an example where she writes about joy and autism:

Joy

From The Joy of Autism blog: “Finding joy doesn’t come without struggle.” Estee gets a lot of flak from “autism advocates” for the way she supports autistic people. Sometimes I wonder if the critics read much beyond the blog’s title. In addition to joy, Estee writes about pain, challenges, anger, disappointment and hope, inspiration and grief. Her core message is one of respect for all people. But even if she did only write about things that made her happy, or if I only wrote about parrots and squares, so what? Celebrating life is not wrong. When situations are difficult, it becomes ever more necessary to find the parts worthy of celebration. It shouldn’t need to be said that finding joy in autism doesn’t mean that is all one finds. Besides, the internet could hold a few hundred blogs about joy and autism without making a dent in the negative things that get said.

—-

If only people took the time to listen, then we would really understand one another. Thanks again, Bev. Because of what you wrote, let me share a little joy from our recent trip to Mexico:

Now what better joy is this?

Things Change So Fast

Filed Under (Single Parenthood) by Estee on 06-01-2009

 

Estee and Adam in a Mayan "Hell"

Estee and Adam in a Mayan "Hell"

Last year, Adam was with me and my then husband in Florida as we awaited my cancer diagnosis. I remember writing some blog entries from my desk there and it seems like just a moment ago.  A year later, Adam and I are together following my two surgeries  — but I am pictured here as a new single mom. You can’t really tell from the picture above, but those caves are as dark as the path ahead I cannot yet see.

The world changes in the blink of an eye, dear friends, and the only thing certain is uncertainty. I am not going to say that life has been easy for us these past few months or that I don’t miss the way things were. I’ll be honest —  friends send flowers when you have cancer, but many leave when you get divorced. We generally do not have a great attitude about divorce and we lack very important support systems — ones I have really needed but had to create for myself over the past couple of months. People feel awkward and yet I wish to give them the benefit of the doubt anyway. I forgive, because if I were in their shoes, I may have reacted the very same way. We are all caught up in the drama of our own lives, I’ve been told.  

We need to work on de-stigmatizing divorce as much as we need to about autism and disability!  Divorce is a time when friends are needed the most, not to mention if you are the parent of a special needs child and going through divorce.  Thankfully, Adam’s dad and I are able to figure things out for the benefit of Adam’s future and Adam has a good family on both sides.

I also know that life, like that first day of autism diagnosis, must go on. We must continue to find our joy. Adam, the first six-year-old to enter a dark “Mayan” hell, came out all right. In fact, he came out magnificently. It was one of the most meaningful experiences I’ve ever had, as I wrote in my last post — about how we are all so connected to one another. If you drop a piece of garbage on the ground, that ends up back inside of the earth, and then again in us. I saw that effect by descending seventy feet beneath the earth’s surface — how incredibly fragile eco-systems are. We too are eco-systems — macro and micro. Our words and deeds effect the way they behave. The way we treat others and regard them, the way we talk about people has a very deep affect and in turn, it comes back into us. There is no way out of it, friends. Whatever we say or do to each other, comes right back to us.

Which leads me to a couple of quotes lurking in my mind in this stream-of-consciousness post: “Be the change you want to see in the world” and, “suffering ceases to be suffering in some way at the moment in finds meaning.” — that latter quote from Viktor Frankl. I have many more quotes floating around in my head these days, but it will bore you now. 

I created this new blog because many things changed this year and for the sake of it, I needed to change the look and feel. I need peace and to find meaning in all things. My writing is about my life with Adam. My ex, being one of my best editors, will hopefully play a part in much of my writing about this episode of our lives (as he has already expressed a desire to be a part of it).  I’m not sure how to navigate the path of single-motherhood yet, but as you can see from the photo above, I am trying. I am trying to keep an eye on the ball — on Adam, on people “like” Adam, and on speaking the peace and BEING the change I want to see in the world.

As he left me for school this morning in the frigid Toronto air, Adam turned, stopped and looked at me for a long time. He kept saying “bye mom,” over and over and lingered. We had spent so much time together over the holidays, just mom and Adam — going to the theatre, to Mexico. 

I guess we’re off to a pretty good start.

To Hell And Back

Filed Under (Uncategorized) by Estee on 04-01-2009

I was in hell with Dante. Yes, my guide was named Dante. He is an anthropologist, studying Mayan culture.  Rio Secreto was only discovered this past year. The Mayans believed in both the upper and under worlds. Two days ago, I visited the tallest Mayan temple, Coba and went to visit the gods of the upper world. In this case, apparently Coba is to honour the honey or bee god — there are about 13 gods of this upper world. I climbed at a fast pace up the steep steps and when I reached the top, a bee insisted on swarming around me despite my attempted swats. Was that a sign?? Was I being greeted by the bee god or being held off??  I’d prefer to believe that the little bee was greeting me a top one of the most spectacular and breathtaking views I’ve ever encountered. I wanted to linger, write on top by the temple, but time insisted that unless I wanted to be sleeping there, I´d better climb down those same steep steps and keep moving.

I walked through the jungle and took pictures of the roads the Mayan´s built — the longest was 62 miles leading from Coba to Chichen Itza. The roads were elevated and were made from crushed sea shells, honey and syrup to keep the mixture together. White, they were built to glow under the moon and the stars so trade could still take place at night.

The following day, I decided to stare hell in the face. It’s the only way to deal with fear, I thought, so what the hell? Adam came with me on this tour and I will have a couple of neat pictures to post when I return home.  Dante was his buddy, guiding him through the most complicated and interesting caves I´d ever seen. Seventy feet below the surface we decended, and we traversed only one kilometer in a system they have discovered now to be about twelve miles. Yet, there’s always more to discover. Adam made it half way through and went back with a friend and another guide back outside. It was a VERY long tour of the dark caves, and I was impressed he had lasted so long. The Mayans didn´t traverse to these depths. Why would you want to be in hell, right? Instead, they made offerings to the hell-gods so they would not come out. Yet down there with the bats, I saw what we do as a people and how we really are interconnected. Roots from trees descend through the limestone, looking for water.  A cigarette you drop on the ground, makes its way down and then becomes part of the caves, or if you want to say, our eco system.  Calcium deposits in the water that take time to form, are disrupted instantly by a touch or oil from our skin.  We don´t recognize our impact on disturbing natural eco systems until we see with our own eyes.

So I was in a Mayan hell, and there was nothing to fear but ourselves. I climbed with my group back to the surface after some time, and the guide told us to turn our hands flat to the side (as if you were pointing with your entire hand). Our fingers touched in a circle. Then, he told us to curve our hands and put our thumbs on top of one another, the circle still formed. And then, he moved our arms in so that are hands, of all different colours, turned in to make a tighter circle, still. Then he said, “there, we are all one.”

It is ironically a similar shape to The Autism Acceptance Project´s logo, but this was more like the look of a mandala. The light was beckoning us to rise out of the hole. I was hesitant. This hell was more beautiful than anything I´ve ever seen.

May He Rest In Peace

Filed Under (Autism and The Media) by Estee on 03-01-2009

In the dark of the night, as Adam sleeps beside me in our hotel room, I put on CNN ever so softly to catch up on what is happening in our world. Too many pina coladas and sun can make one a little soft and mushy.

He looks so peaceful, my Adam, spending sunny days on the beach here in Mexico and I know that every day we have is precious. He looks content and exhausted. As I turn my head back towards the television, the room completely black save for the glow of the screen, I read the by-lines that Jett Travolta — John Travolta’s son dies at sixteen of Kawasakis disease.  So why don´t we let them mourn and let Jett rest? Instead, I am reading on many of the autism blogs about it.  “Jett was autistic…they should have treated him. ”  All the speculation….Of course I do hope the parent´s were not negligent in any way, but none of us have all the information. So I’m putting in my two-cents.

It’s the “autism community,”  whether it’s Scientology belief that if you have something you can cure yourself (I am not educated in Scientology and do not know if this is accurate but it is what I have read on your blogs), we have become a community of pit-bulls (I wasn´t also not fond of Sarah Palin´s hockey-mom analogy). I’m not saying I endorse that philosophy  that people should cure themselves. “Treatment” often leads to very dangerous therapies and reprecussions for autistic people. When parents cannot accept their children, they often try unfounded, unproven and very desperate things.

Yet, either for the sake of “neurodiversity-awareness” or those who want to claim that autism should be annhiliated, we are all out there identifying autistics. In that very act, we are engaging in something dangerous to humanity. Usually it’s not in good ways that we identify autistic people, but rather to point out all of their “deficiencies.”  We who recognize the positive contributions autistic people make in our society identify too, but it’s at least better than suggesting that all autistic people are not good enough as they are, or recognizing their unique abilities and offerings to our world. The point is, once we don´t see difference, we’ve won. Or we can see it and just like a tree, a rock, or a river, accept that it’s just a normal part of our surroundings.

We must think then, for better or for worse, what kind of spectacle is this? Does it matter? Once you are tuned in to disability and autism, you can see autism all over the place. You can see flapping and flailing even among the non-autistic. And what´s wrong with that?  If we really believe that we all belong to the human community, then we accept autistic and all kinds of people. Jett is gone. May he rest and let the family live in peace.

I go back to Adam now to swim in the caves in Mexico. I treasure every day and thank God I have him and this moment — my wonderful, beautiful, autistic son.  We don’t treat him as anything but the gracious and loving person he is. I think the world is lucky to have him.

How´s the Weather?

Filed Under (Uncategorized) by Estee on 02-01-2009

Weather pulls us together. Ever notice? Here in Mexico, we all flock to lie under the Mayan sun, escaping the cold and gray of the North. We don´t talk much down here. There are lots of books, booze and the sound of crashing waves.

Back home, I turn on the Weather Network. Who would have ever guessed it would be yet another 24/7 entertainment channel?  Just an aside, I get personally excited with Weather Warnings and tornado watches. I start Blackberry-ing friends in cottage country to take cover when the weather threatens up there.

I like snowstorms that leave me stranded inside –or they are supposed to leave us stranded. It´s really an invitation for me to take a long walk with hard snow scratching my face,  having to lift my legs so high just to take one step. I do it because no one else does. It´s just me and mother-nature out there.

Then, there are more serious weather matters. The Tsunami, Hurricane Katrina, among other natural disasters, and we all pull together. We know that if it was us, it would be (or be more) catastrophic. Compassion seems only to emerge when we can picture ourselves in other people´s shoes and situations. I’m not going to talk about whether or not that´s problematic in and of itself as we tend to ignore the rest of the world unless something happens that might threaten our own existence or security. When it seems to hit closer to home, boy do we start to pull together.

Yet, that´s how it tends to go as we all become preoccupied with our own lives and believe that everything will stay the same. I know that things do not stay the same. I know it the hard way. And no one asks, really how I am. Instead, it´s easier to ask, ´”how´s the weather?” Forget about, “how are you?”

You see, people really do not want to know. Maybe it´s just too scary to know. Maybe people worry about getting into a whole story they do not want to hear because it might be too boring, painful, or whatever. Everyone has their own lives to worry about, right? Or, might we all expand ourselves by giving of ourselves, by taking time to ask that very question?

Yet, maybe, just maybe, the weather is just a safe segue to get to know each other better, or so I’d l ike to think. So, I will tell you that the weather is great down here in Mexico and I’m about to climb a Mayan Temple named Coba. Please let me know if you are stranded at an airport due to the weather, or if the gray and cold is getting you down.

I really do want to know.

Under the Mayan Sun

Filed Under (Uncategorized) by Estee on 01-01-2009

This is for those of you who “get” why women like me relate to Diane Lane in Under The Tuscan Sun.  She is one of my favourite actresses — same age, same endearing quirkiness and shyness, I think. In the movie, she is a writer. I am a writer.  Her husband leaves her, she is left for a year or so, sort of stuck in life and unable to write, until her gay friend who is pregnant says, “You are at a crossroads. You are at risk at becoming one of those depressed people forever.” The friend gives her her ticket to a tour of Tuscany “Gay and Away” because Diane (Frances is her character´s name) simply isn´t ready to meet any men or, perhaps, be badgered by the threat of being happy, or does not want to give away pieces of herself after being so hurt. Being with gay people is some sort of promise that she will be able to have fun without the pressure. It reminds me of the recent Globe and Mail article (written about two months ago), called The Unsung Heroes of Divorce, where Jennifer Aniston explains how her brief relationship with Vince Vaughn literally “breathed the life back into her” after Brad Pitt left her for Angelina.  For Frances in Under The Tuscan Sun, it was she who decided to breathe the life back into her SELF. Perhaps that´s why I like her character so much.

For those of you who know the story I´ll make this short. She goes to Tuscany and looks for signs. You see, like me at a time where my feet are still floating and not yet planted on the ground anywhere in particular yet, you look for signs, you think a lot, you dream a lot of where you want to be. It´s an important process.

Diane´s character buys a house in Tuscany and is totally unsure of what she is doing except that she knows she has to do it, until she breaks down in tears to the hunky Italian, and overly-friendly real-estate agent, “I don´t know what I´m doing here! I have a home for a family I do not have!”

“Then why did you do it?  He asks so sweetly, you can imagine how Frances could have melted away in him.

“I want a wedding in this house,” she says with weepy, doe-eyes. “I want a family in this house.”

“Senora, there is a story that in the Alps, they built train tracks before they knew a train that could make the trip.”

As it has now entered 2009, this post is about building before seeing; before knowing. Life is hard. We all have our different versions of “hard” and we are not alone.

Yesterday, I had a sign here under the Mayan sun. I inadvertantly placed myself on a lounge chair and overheard a story of another single mom telling someone how difficult it is to raise a child alone and how she does everything for her daughter. She was saying how “hard” it was and then I was thinking of other moms I know who can´t leave the hospital because of their child´s terminal illness; or the other parents I know who is dealing with different severities of disability and also trying to navigate a world full of barriers and ignorance. I have an autistic child, and sometimes yes, it´s “hard.” I, like many of you, wonder if I’ll be looking after Adam for the rest of my life.

Our difficulties are all relative, you see. We must have compassion for everyone, all views, because as long as they don´t harm other people and enable them to live full lives without barriers, there are grains of truth in all of our stories. The point is we really do have to work hard to end ignorance. This is a big difficulty.

My blog will take a new turn this year only because this is the kind of writer I am. I will be writing this year as a single parent of an autistic child.  I will also build those train tracks before there is a train that can make the journey.  This is what life is, you see. If we don´t have these struggles, we can never know true love, or real happiness. All that comes when we accept what comes our way and find contentment within ourselves.

So I am building without knowing. Diane´s character, “Frances” had all her wishes granted. She built the house and had a wedding, even though it was not her wedding but the wedding of the family she creates with her new Italian and Polish friends. She also created a family who live in her beautiful house, even though it was with her gay friend and the baby she ended up helping to raise.

Finally, when all of her wishes were granted, a miracle happened. Remember? At the end of the movie, she looks content. She still has no one in her life, but she is nevertheless happy. She lies on the lounge chair with her glass of wine and shuts her eyes, you just know, giving thanks to the life she has created…until a rather nice looking writer-man picks a ladybug from her sleeve. Ah…the train comes.

We just cannot be ready unless we go through the “hard” and build those tracks.

What do you want to build in 2009?

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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.