Autistic Writer for Huffington Post

Filed Under (Autism and The Media, Autistic Self Advocacy) by Estee on 28-05-2009

Tagged Under :

Ari Ne’eman of The Autistic Self Advocacy Network, and an autistic man himself (he can be viewed on the Positively Autistic video by CBC on the right hand margin of this blog), is now a writer for The Huffington Post.

Congratulations Ari on this and the outstanding work you and ASAN is doing.

View Ari’s new column on HuffPo here.

Disabled People To Wear Signs?

Filed Under (Critical Disability Studies) by Estee on 27-05-2009

There was a time when I was chastised for comparing certain persons of a certain culture in their wearing of a sign to classify them.

I know that I might give Adam something he can hand to someone one day if he cannot talk. Lots of kids where pictures on their belts so they can easily communicate to another person, or they might have one of those nifty wallet cards telling someone they are autistic. People with allergies or other medical conditions (I am not classifying autism as a medical condition) where Medicalert bracelets. So is this helpful? Or is the road to hell paved with good intentions?

What do you think?

Indonesia asks disabled pedestrians to wear signs
Transport experts said the law was preposterous. -AFP

Tue, May 26, 2009
AFP
News @ AsiaOne

JAKARTA, May 26, 2009 (AFP) – Disabled pedestrians in Indonesia are required to wear signs identifying them as handicapped under new traffic regulations passed unanimously by parliament on Tuesday.
Amendments to the Traffic and Transport Law state “handicapped pedestrians must wear special and clear signs which can be easily recognised by other road users.”

The lawmaker in charge of the committee which drafted the amendments, Ahmad Muqowam of the Islam-based United Development Party, said they were designed to protect disabled people from road accidents.

“This is a humanistic act. It’s for their safety on the streets,” he told AFP.
Asked what the signs should read or where people should wear them on their bodies, he said this was up to the government to decide at a later date. “They won’t be penalised if they flout the rule; it’s only a precaution for their safety,” he added.

Transport experts said the law was preposterous and the government should focus on providing facilities such as level footpaths and wheelchair ramps rather than requiring people to wear signs.
“It is strange when handicapped people are asked to carry extra burdens and obligations,” Institute of Transportation Studies chairman Darmaningtyas said.

Association of the Parents of Disabled Children chief Hendratmoko said: “This is a mistake. Why should our children put signs on their bodies?

“I don’t understand what’s motivated the lawmakers. They should give protection by providing facilities for the disabled. There are hardly any facilities even in a big city like Jakarta.”
Critics have complained that the amended law gives priority to car drivers over pedestrians and those using public transport, and runs counter to efforts to encourage people to take buses to alleviate pollution and traffic jams.

The Indonesian capital, a city of some 12 million people, is choked daily by traffic gridlock but there are almost no facilities for pedestrians – able-bodied or otherwise – except footbridges.
The Institute for Transportation and Development Policy has predicted that by as soon as 2014 Jakarta could experience total gridlock, where all road space is filled with barely moving vehicles.

Poop Talk: Jenny McCarthy and Oprah Winfrey

Filed Under (Activism, Autism and The Media, Autism and Vaccines) by Estee on 19-05-2009

The National Post ran another article on Oprah’s hanging-by-a-thread reputation in brining on board Jenny McCarthy, poop-talker and vaccination activist. McCarthy, former playboy bunny, suggests that the MMR vaccine caused her son’s autism.

“Ms McCarthy announed what her publicist calls “a development relationship” with Oprah’s company, Harpo, earlier this month. Her first gig in the deal is a Give It up Before Summer blog on Oprah.com where Ms. McCarthy blogs about her daily battle to give up refined sugar…she has blogged about hot to refuse a cinnnamon bun on a first class flight and how her poop contains too much yeast…”

Yep…that’s what I want to read about…Jenny McCarthy’s poop. I certainly am tired of listening to her claim that vaccines cause autism, with no scientific evidence linking them at all after much rigorous research. I believe the danger as Emily Senger, the reporter at The National Post cited via Dr. Kumanan Wilson, is quite correct: Oprah is seriously risking her credibility and reputation. Does Oprah care to investigate the abuse and deaths caused by not vaccinating children or because of the unacceptance of autistic people as they are either by misunderstanding, ignorance or caregivers stating they will “try anything and everything to cure [their] autistic children?” For a well-rounded view of the issues facing autistic people and their families, there are many non-celebrity stories that would be far more interesting.

Remember Phil Donohue, the talkshow host from which Oprah’s show was fashioned? Remember when Phil and Oprah used to interview real people with real issues to discuss in a public forum — many of them who did not have book credits or celebrity status attached to their names, but who were simply interesting in their own rite?

Are the days of town-halls and really interesting talk shows gone? I really enjoyed watching Oprah when she did these kinds of shows that seem to have gone way way way by the wayside.

Rebuilding My Creative Life

Filed Under (Single Parenthood) by Estee on 17-05-2009

“Most writers write to say something about other people  — and it doesn’t last. Good writers write to find out about themselves — and it lasts forever.” — Gloria Steinem

I have to admit it. Going through this divorce is one of the toughest things I’ve had to go through in my life. It really bothers me that some people think it’s easy and trite. It definitely is not. My marriage to Adam’s father was the most important adult-to-adult relationship of my life. So the the reason I’ve had trouble working and writing and responding to emails.  So the reason that many of my usual tasks have easily slipped my mind. I’ve hesitated and hesitated — do I write about my personal life? Do I write at Adam’s peril? What do I keep and what do I reveal, for as a writer, I find it difficult to avoid the truth and the self and disguise it in fiction. I am not a fiction writer. Not yet, anyway. As for Adam and this divorce, as far as I’m concerned, I’m only interested in human dignity, and while truths emerge over time and perspective, Adam’s father and Adam’s mother deserve the best regard and respect for Adam’s sake.

I’ve hesitated about writing about myself too much for fear it may appear like “writing therapy.” But let’s face it: all reading and writing is “therapy” if it brings us to a greater awareness and understanding of ourselves. The best reading is the “a-ha” moment — a connection with an author’s observation. For me anyway, the best reward is when others express gratitude and connectedness to my writing. Another reward is a larger perspective of life and the world itself, and a growing compassion.

Adam and I must move houses. I’ve been preparing one since the beginning of March. This is also top of the stressor list (death, divorce, moving…). So again, if I haven’t responded to some of you, please do not take it personally. Thank goodness for the house, even if it’s all bittersweet. A house allows us to build again. It asks for creative energy. As a creative person, I’ve come to realize that I’ve had a desperation to build something lovely, something peaceful.  It is only bittersweet because I am still living in the “matrimonial home,” which I built for my family and will soon have to leave. I put as much creative energy into that home too.  Yet with Adam’s father now gone, there is a loneliness to it all.

As for work in autism, I do so again quietly. TAAP will have to reassemble. It’s website will remain up as I seek to find ways that outsiders can contribute to its growth more readily and easily. As I read Gloria Steinem, I related to this: “I had felt burnt out many times in the past twenty years, like so many people in social-justice movements — especially in the feminist movement, to which women bring the very training in selflessness we are trying to change — yet unlike other women with more self-vision, I believed so little in my own inner world that I couldn’t stop to replenish it. Like a soldier who is wounded but won’t lie down for fear of dying, I just kept marching. Why? Well, if I stopped, I would have given up the way I made myself ‘real’ — that is, by being useful to people in the outside world — just as I had made myself ‘real’ as a child by keeping so busy that I numbed the sad unreality at home where I looked after my mother… my image of myself was very distant from other people’s image of me; and that, in short, my childhood years — a part of my life I thought I had walled off — were still shaping the present as surely as a concealed magnet shapes metal dust.” (from Revolution From Within, preface).

Maybe you can tell where I’m going as I move through the fact that I had lived my recent life for Adam, and I, like so many other women, was taught that the only way to be a “good” woman or mother was to constantly work and serve, leaving myself to the very end, if at all. I am not at all complaining or suggesting this was or is Adam’s fault. All of it was my choice — to work, to serve — and I still intend to do so. It’s just that as mothers with disabled children, we have a tendency to throw our entire selves into our children. And why? Needs are higher, for certain. But I also wonder about the lack of social supports to help us out — lack of respite for the average family, lack of inclusion, services and so great a lack of understanding. How many years (since 2005) have I written this blog and written before this blog, trying, by gargantuan effort, to convince family, friends, schools and public, that Adam is indeed worthy and valuable as he is?

Was it worth it? I have no regrets. But work in social justice movements may come at a high price. Not paying attention to our own growth and nurturing our relationships also comes at a high price.  How to mitigate it? I’m not so sure. I am not solely responsible for not nurturing it. I did what needed to be done. Adam still needs this to be done. I recognize that I also need to take care of myself for him. And that fine balance seems difficult for me to achieve. Or maybe I’m simply too hard on myself.

I’ve been called strong so many times. As I move through the pain and loneliness of divorce, sometimes it sounds like an easy write-off to me — “you are so strong, you’ll be fine.” I can’t tell if people say this to me because they fear my pain or just do not want to engage in it (understandably). I feel obligated to keep on a happy face for others, so I do not scare them away. Being a divorced woman comes with its share of stigma.  All I can say is I recognize that my situation renders great discomfort in others and sometimes I cannot spare the energy to spare them, even though I try.

For certain, I’m learning so much. I’ve spent the day in my new garden, filling in gaps in the earth with new perennials, being with the plants and the earth, knowing they will grow and bring me pleasure with their life. The dirt beneath my fingernails and a sore back is also a reward — knowing that I’ve contributed to renewed growth. Gardening is a creative, hopeful act and a belief in the future. A sore and gritty body means I’ve done the work to nurture it.  I do it as Adam is away this Victoria Day long-weekend with his dad. It gives me time to think.

I’m alone and I honour my relationship with myself and with Adam’s father to permit myself to mourn and learn as I dig deep. I believe that distraction is counter-productive. I believe that if things have to drop away for awhile, so be it, as I put my energy into rebuilding my life and making it as productive and creative as possible. I believe that, in the words of Noah Benshea, “strength is not the absence of weakness, but how we wrestle with our weaknesses.”

“I worshipped dead men for their strength, 

Forgetting I was strong.” — Vita Sackville West

A- ha.

What Grounds Me

Filed Under (Adam, Family, Single Parenthood) by Estee on 11-05-2009

I love this picture. It was taken yesterday atop of the CN Tower during a Mother’s Day lunch. Adam loves to kiss mommy and make her laugh (who says little auties don’t have a sense of humour!). As a woman going through the roughest times of her life in divorce (I will suggest that when someone you love leaves, it is like a death), it feels like a relief to count on the one thing that keeps me grounded and content. From this mom’s perspective, Adam and I are each other’s rock. We’ve managed to keep it together, despite lots of changes and a coming move to a new home. If divorce and moving be the top life stressors, then I will tell you, I think I’ve made it through.

I am sad to soon leave the home I built for Adam and my family and all that it represented. Someone said to me that a home is just four walls. But he was so wrong. A home is where the heart is; where love resides. My heart, though healing from a break, is intact. With a growing wisdom, I will raise a little boy knowing that where-ever Adam is, my home will be.

The Wisdom of Time

Filed Under (Uncategorized) by Estee on 05-05-2009

I’m in a Starbucks because my Internet is down at home. As I check in on my email, I listen to three newbie autism moms refer to their books and talk about anxiety and autism, schools and trying to make sense of it all. They are abuzz on caffeine and worry, their voices popping in and out of each other to get a word in edgewise on a new book they are reading.

They are talking about methods, what’s better, what’s not. For some of us older autism parents, this is old territory. I am listening to the mother I once was and ponder the one I am becoming as Adam grows, as I go through separation and divorce. The very fabric of our lives are changing in profound ways — in ways I am right now, too close to objectively comment on. Yet listening to new moms allows me to to consider how time changes us.

There would be nothing I could say or do to change the learning process they must go through. They are engaged and intent. They are Jenny McCarthy’s “warrior moms.” There is likely nothing that will stop them from trying to do what they can for their children. For some, it will be the anything and everything approach. It may be reading every book they can get their hands on. It may later or sooner be meeting autistic people, reading research, attending conferences….I can make a long list of to do’s that was a part of my journey. I have kept every list, every day diary, every journal I have, and every communication book on Adam since day one.

As soon as Adam was diagnosed, I began reading. He was so ill, I remember. We had our suspicions, Henry and I, and I booked several diagnostic appointments just prior to our Xmas holidays in 2003. Adam was 18 months old. We had traveled to Nassau and Florida and Max and Adam became very ill with a horrible flu. I also became very ill. I nursed and tried to help Adam as I also lay for days in my in-law’s more comfortable bedroom in Florida. I don’t think we got up for nearly a week. Adam ended up in emergency on intravenous. It was a nerve-wracking time. Still, this period began my intensive reading about autism. I started by finding books at our local bookstore and it went from there. I was hyper-vigilant and anxious. Life as we new it (or expected it) had suddenly changed, although Adam had not changed at all.

I’ll agree that early autism moms can become “warrior moms,” protective of our children and determined to get them “help.” I’ve learned to calm down. I’ve learned to respect Adam’s way of learning. I’ve learned that what I did and read and all the hard work was something that I would never and could never change. Yes, I’m on a much different path than Jenny and I’m one of her critics. Yet when she wrote “warrior mom,” there was something universal in that that I know every mom can relate to.

The more I’ve learned to accept life as it is, the more easily I can swim in it. When I hear a report on CNN about autism and amygdalas and brain size, the more I know this will be tempered by further science. Gary Taubes, as I quoted in my essay The Mismeasure of Autism noted that when it comes to science, it is the first claim that is likely to be wrong. While CNN is reporting a “finding” based on a theory, it is still not exclusive fact without further testing under different perspectives.

I would like to discuss the anxious parent — the neurotypicial parent (or a parent under the delusion that they are typical for everything is relative). We are the of earlier generations who had not gone to school with and played with disabled kids. They were rarely seen in our neighbourhoods. They were the kids who were sent away. Yet, because of parents like Adam’s mom and many millions of others, who will not accept exclusion, this is beginning to change.

What lens do we look at autism through and how might this change in the future as Adam’s generation is exposed and plays alongside other disabled children? This is the social science test that I am interested in. Let science undergo the test of time.

A Brief Update on TAAProject

Filed Under (Uncategorized) by Estee on 01-05-2009

I have received a few queries on The Autism Acceptance Project’s website. It seems to be down, but we are working on resolving the problem and it should be up again soon.

We will be working on the website in other aspects as well.

Stay tuned!

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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.