Praise Only for the Cured: A Comment on Jenny McCarthy, and How The Media and Society View Disability

My commentary on recent media events:

Life is a Circus

Adam went to the circus. Cirque du Soleil, that is. Kooza – a story of the innocent, “a naïve but charming clown striving to find his own place in the world. Between strength, fragility, laughter and chills, and turmoil and harmony, the show explores the themes of fear, identity, recognition and power.” I read the program afterwards. I am a big fan of Cirque du Soleil and relish the chance when Henry wants to go to Vegas just so I can catch the latest show. The last time I saw O, I knew this was for and all about Adam. For Cirque is about capturing the greatest human attributes of all – imagination and spirit.

Adam was glued to Kooza, which is currently showing in Toronto. Music, optics and contortionists all mesmerized him so much so, he was throwing objects in the air when he came home as if he was trying to juggle, just like a fellow did on stage.

But more than that, all of our human struggles are encapsulated in this marriage of art, multi-media, music and movement – good versus evil, the nature of being human and in Kooza, of innocence. The clown begins flying his kite. I have a picture I cherish of Adam watching a kite fly on the beach, a symbol of our dreams and the scope of our imagination. Adam peers at it flying high above him in the sky – an emblem that we all have something we look up to and aspire towards.

As I reflect two years after I started blogging and even calling this blog the Joy of Autism, I am content, because it is about capturing, or at least trying to capture this innocence, this spirit that is within all of us. As parents, we understand the possibilities that abound for our children despite their innocence and limitations. Our creativity and imagination can render the possibilities, boundless.

In talking about imagination, I am reminded of the Grimm fairy tale, The Story of a Boy Who Went Forth to Learn Fear. The father abolishes the young “stupid” one, saying “there is no hope for you.” All the boy wants to learn is how to shudder, as he does not understand fear, while the father tries to teach him more practical things. Since, according to his father, the boy cannot learn, he is expelled from his family home. The boy vows he will make a living from learning how to shudder. He comes across a man who challenges him to go the haunted castle where he could learn how to shudder if he would just keep watch there for three nights. The king promises that whoever would dare do this could have his daughter in marriage and would have the treasure that is guarded by the evil spirits. Many men had entered, but no one had come out of the castle.

It is a macabre story, as the boy bowls with skeletons and exhibits empathy by trying to keep his dead cousin warm. He confronts evil and defeats it, thus winning the treasure and the king’s daughter. But he still complains that he has not yet learned how to shudder. Ironically, the wife pours a bucketful of minnows on the boy during his sleep and he wakes up crying out, “Oh, what is making me shudder, dear wife? Yes I know how to shudder.”

When I read this story, I not only marvel in the bravery of the boy, but also in how the father underestimates him. It is also notable that the boy is also a literal learner, that he only learns how to shudder in the most simple and kinesthetic way (perhaps what is obvious is not what is the first thing we teach). It is laughable that he learns fear only through his wife (this is the interpretation I've read), but to me the point of the story is in how the boy was written-off by his family, and later succeeded by his seemingly purposeless and unprofitable quest, from which he ultimately profits in the end. I am not a fairy tale or Grimm expert, but I would love to hear of any other interpretations of the story.

My interpretation is that it is about what we can imagine. Limitations can still prove to be limitless. I just hope I can be the kind of parent that can continue to nurture Adam’s uniqueness and imagination, despite my own limitations. For all of life is a circus, a stage, and we all have a special role within it.

Another Autism "Story" -- Jenny McCarthy

I am in the grocery store line, and yes, I heard that Jenny went on Oprah to talk about how diet and biomed "cured" her autistic child (who still flaps by the way). "Fighting for her Autistic Son," says the People Magazine headline. My stomach clenches. Oh no, I should be used to this by now, I think. Another "devastating" article that talks about autism as a disease -- that can be cured with medications and therapies. I sigh. I reluctantly buy it -- like a compulsion. I would prefer to ignore it. I can't.

The story starts off the same. Every parent is shocked, worried, faces fear. The beginnings of our stories are almost always universal, and there is nothing wrong in stating how something effects us. But, in the article, it doesn't really stop. We see the loving pictures -- son and mum look happy. Is this to show that you can love your child and still hate autism? Or is this to show that her son is "cured?" I am cringing while reading the saga, and the way its told -- could be People Magazine's fault in part. It is a gossip magazine, after all.

But here's where it really got to me. The interviewer asks about her relationship with Jim Carrey: "What about having children together?" To which she replies:

"[Exhaling] Let me take a drink of water on this. I'm done having children. I always thought I'd have at least four or five. But I got my a-- kicked."

Well I'm sorry, Jenny. You really lost me there.What do you think all the autistic adults think about that statement? Did you consider how you made an entire group of people FEEL? How would you like your mother to say that with you, she got her "a-- kicked?"

As a mom with five children, and four of them step children, they are a blessing. Adam is a gift and everyone of his brothers and sisters will agree. You can read Max's take on Adam in an essay he wrote nearly two years ago now: From Adam's World To Mine. Max is now a one-to-one for older autistic children at camp.

Adam has made our lives richer by showing us that we can, without difference and disability, often be living in our own little worlds, our boxes, our arrogance. Our willingness to open up to possibilities, and to learn from Adam and other like him, enables him to succeed and us to become larger. Adam is beginning to speak sentences, even though he does not speak much, and other days can't speak at all. He can spell, he is aware, and he is --God forbid -- autistic. Jenny's child is the same age as Adam. Adam could not do many of the things his same-aged peers did when he was two. But yes, even autistic kids grow and learn with love and support. Adam has had lots of support, but not always the typical kind we hear about. We struggled to find ways that specifically HE would benefit from -- and we had to weed through various therapies and therapists to make it work. Today, his teachers are commenting that he can do many things that the other kids cannot! While I agree with support, I also know that autistic kids learn which is why, at five, we might be hearing that kids are "cured," when they really are still autistic and learning.

As I said, I have no issues with parents who want to relay difficulties and challenges and be honest with how they feel. I do have difficulty in preaching unfounded methods, insulting a community of people by stating autism is "horrible," without qualifying that "horror" -- is it really within the person who says it? Perhaps this reflects a need for more self-reflection instead of blame.

I am also uncomfortable with separating autism from the person -- because while there are challenges in being any kind of minority, in this case a person with a disability, we should not undermine individuals just because they have a disability. We have to acknowledge that human experience is, in part, defined by who and what we are. I see parents who always want to separate that -- autism is just a label. Of course we are more than our "label." Yet it's more complex than this. The architecture of our lives is effected by both our environments and the way we were born. So why are people really saying this? Because they believe autism is awful? Because they are afraid of the stigma? I am always curious why people think they can separate autism completely from the person. We can't take deafness away from the deaf person and the way deafness influences their experience the world. We can't do it for blindness, physical or any other disability.

Now, let me conclude that I wonder if Jenny would still have children if she saw this video: Neurotypicalism Every Day by Christschool. Of course, it is a response to Autism Every Day, the unfortunate and poorly thought-out Autism Speaks' video. It just goes to show that if you put a certain kind of lens on something, you can yield a certain kind of result. Typical children look "horrible" to me here. They have melt-downs and geez -- parents get divorced over them. If I saw this video, I would NEVER want to have a neurotypical child:

Call for Submissions

The Autism Acceptance Project is seeking to showcase the work of autistic people everywhere. If you are poet, an essayist, a fiction writer, an artist or musician of any type, we would like to show your work and direct our audience back to you.

If you are interested, please contact me at estee@taaproject.com.

Do Disability Organizations Presume Competence?

I have quoted Kathy Snow from Disability is Natural before and value her point of view. I highly recommend that everyone read her recent paper Do Disability Organizations Presume Competence?

The answer is no. Not autism ones, especially. When acceptance is entwined with ideas of recovery, when autism organizations want to recover, prevent, cure and praise autistic children only for typical responses, it is neither acceptance nor a presumption of competence.

"The service system (early intervention, special education, adult services, vocational-rehabilitation, therapies and interventions, etc.) seems to be built on the presumption that people with disabilities are incompetent," she says. "The result? Two unequal class of people ("providers" and "consumers")....the newsletters of organizations often tell the tale. A headline screams, 'Join the End the Waiting List campaign.' Advocates are exhorted to attend the rally...yes we need to effect systems change. But is ensuring government assistance our highest hope for people with disabilities? Doesn't this reflect an underlying PRESUMPTION OF INCOMPETENCE?

Wouldn't greater outcomes be generated if an organization rallied its troops (and its board members)to spend their time and energy helping individuals with disabilities find real work for real pay?"

Virtual Learning Options in Ontario

While my own son is only five, and attends a regular school with a shadow, I anxiously anticipate high school...already. Many autistic teenagers I know are having a rough time in high school. It's a time when peer pressure is at its highest, and one's difference and lack of sensitivity and understanding about autism can really pack a punch. We often see a rise of "behvaiours" as a result of high school, and quite frankly, with the inhospitable integration we currently have set up in our schools, high school just ain't fair for our autistic youth. Still, the onus sits upon the autistic to "change" and "be normal," while the rest glide by with insensivity.

While we all know we need to change that, people need options. I don't know how many will be available in the future and I think of many autistic youth today -- who could achieve at high school, given the right patience and accommodations.

People tend to think of homeschooling as a cop-out or as a failure. I beg to differ. Take a look and subscribe to Life Learners magazine to see how homeschoolers are succeeding in higher education and in society.

Also, there are virtual options that may be quite suitable for many autistic learners. The social piece may seem to be missing, but what's so great about the social piece if no one cares to understand autism and one's autistic child is not thriving in the environment? I would rather Adam go to many other wonderful supportive "social" environments that exist and that accept him. So, if you are looking for options, share them here and take a look at The Virtual Learning Centre, which partners with the Ministry of Education for more options in getting through high school.

The Autism Acceptance Project Announces A New Partnership

We all know how stigma influences the hiring of autistic people. A lack of understanding about the nature of autism limits opportunities. This is an interesting article on how the way society thinks about autism, can be an obstacle. It is titled Letters: Autism Shouldn't Be A Roadblock to the Working World.

LinkUP is an employment service in Toronto for persons with disabilities. They have autistic clientele. TAAProject and LinkUP will work together to help employers come to understand and value autistic people in the workplace.

Our autistic speaker's bureau is growing and we are getting calls now to have autistic individuals speak to various organizations and schools. Now is the time to book your speaker. Keep checking the TAAProject website for a growing list of speakers. Our newest additions are Matthew Schuster from Queen's University and John Gelmon, a friend of TAAProject and our new copy editor. If you are autistic and you are interested in joining our Bureau, please contact us at 416-487-3600 or at www.taaproject.com.

We are also working on many other partnerships which will soon be announced.

The Zen of Chocolate

Adam loves chocolate. He will sing for cake, remembering the Happy Birthday songs of parties-past. There is a true art to eating chocolate, and Adam has mastered it. So, instead of worrying about weight-gain, I imagine lolling in bed with a box of bon bons. He simply and truly makes it one of the most pleasurable things to watch that you just gotta try it...guilt-free.

Adam will wake up in the morning, a look of determination washing over his face. His eyes will then furrow as he forms his mouth to say "Choc-oh," looking into my eyes. He musters up the energy to say it just so, the "c -oh" punctuated, his mouth extending the shape of an O a few seconds after the word has been said, so that it's as if the milky stuff floats in the air.

I blame Quaker, not myself. They make good chocolate chip granola bars for breakfast. Back in my day, my mother blamed Captain Crunch.

Okay, I let Adam have a chocolate chip granola bar before his healthier breakfast. He will ask for the finest of African Dark in the afternoons, and when the cake comes out, I can't leave a party quickly.

So, I sit back and take a long look of delight that passes Adam's face when he gets his piece of cake. May they all eat cake.

Why Friendship Can Be Difficult -- A Parent's Point of View

I am the kind of person that has a couple of really close friends. Unlike my husband, I will not likely have the big parties and reunions, although I enjoy them when I'm in the mood. I'm just not that good at keeping an array of friends like a financial portfolio, and I cannot spread my emotional self out too thin. No, I have one friend who I can really talk to and be myself.I have others who I can dig down deep with -- usually those "artsy" types. Others have come to me by virtue of marriage, and my other ones, by virtue of the work I do now -- in writing and in autism. I am like many of the friends I have -- not purposely snobbish or selective -- but simply wanting to enjoy myself, be myself, and sometimes, dig down deep. I am quiet and private, and in many ways upon reflection, think I am somewhat reserved like my son Adam -- carefully evaluating people to see if they are safe. After all, our lives are different, and one has to be careful not to expend too much energy on those who we have to continually explain "autism" and disability to. I mean, one doesn't want to have to keep explaining to one's closest of friends. The years pass and we just want to go on living, thank you. While I do enjoy explaining when people want to listen, there are times we just want to be, without explanation.

Maybe this is why I am extremely sensitive to the language people use to describe autism. Some days I can let it roll of my back. I imagine most parents feel it -- days when we feel invincible and days when subtle bias -- spoken nonchalantly -- really gets to us. It is like when someone refers to their hyper-active child jokingly as "miswired" and then says it is "just like autism." This happened during a conversation I had last weekend, which was all about bias and how society views the disabled. Then suddenly, voila! Out of nowhere came an anesthetized remark, intended to close a conversation pleasantly, and not at all intended to insult.

It puzzles me further how some autistic people refer to themselves as "miswired." I mean, where do the references come from if not from non autistic people and the scientists who theorize about autism? How much does the way our medical community influence the way some autistic people view themselves and theorize about their own autism? It makes me incredibly uncomfortable as I envision Adam listening to such references at future family functions, Barmitzvahs and weddings to come -- the terms that media and medical professionals erroneously and carelessly use to describe the nature of autism, which then becomes the way that others come to think of Adam. These can either be subtle or blatantly insulting references that, if you are autistic and you don't work to build your self-esteem, might just undercut you.

It is really time to address the use of language in every situation. It is something I am committed to doing, no matter how tiresome, except it is important for others to know that it can be. It is easy for me to exemplify it in my community -- I can use examples like, what if someone was having a nice conversation and just dropped in something like 'all Jews are good with money?' Instantaneously, if you are Jewish, you feel the bias. You feel that everything that was positive and equal between you, has evaporated. While you could stand by and "educate" the person who has just said something insulting, you consider what you might gain or lose from it. In other words, is it worthwhile or just going to zap you of your energy? Or, will this person understand the point that is trying to be made? Finally, how can you say it so that it doesn't make the other person feel they are under attack, despite the way the comment just made you feel? These are the down-and-dirty details (and hazards)of everyday activism.

Fortunately, my "circle of friends" has come along the journey with me, and I am richer because of it. And despite my reservedness, I think I have made more dis-abled friends who have taught me to accept my need to be (at least in public) reserved.

For some interesting lists on politically correct language visit www.sideroad.com. . Here's an argument against the use of politically correct language, as the author suggests that to just use the language only in order to not appear ignorant, is also missing the point.

I tend to lean in the direction that if it's insulting to the group of people the term refers to, then the term is inappropriate.

Explaining....

Watch this excellent video by Amanda Baggs. It speaks for itself:

Dancing

These videos from The Autistic Pride Dancers really made me smile today.

Maybe it's because my little Adam, who is humming classical music now everyday (perfectly to Mozart, Bach and a little bit of Berlioz, I might add), has also taken up dancing, swaying his arms and trying to move his body to the beat. Maybe it's because art does not deliquesce autistic people to "abnormal genes" but rather, allows us all to see for ourselves the facund human spirit.

Adam, and all of this, makes me so proud.

Thanks, Ralph, for posting these!

Measures of Time

The beginning of school. Most parents scramble to get their kids ready -- maybe new clothes, a new knapsack and for some of us, some story books on transitioning back to school. Maybe as children reach past the toddler age, time fuses a little, maybe the post Labour Day routine so ingrained. Maybe not.

For us, this first day of school is a stark measure of time passing by. Adam's cherub cheeks have gone now, his body has grown taller, making him look skinny even though he eats all day long. This summer, we saw a real joy in camp -- Adam allowing his friends to kiss him, to hug him and Adam, sweet Adam, relishing it with giggles -- a stark contrast to Adam's earlier years when he didn't like people coming too close -- let alone noisy children. We traveled to Alaska where Adam endured six hour tours with grace and began to use his first four-word sentences. We saw a sudden maturity at the doctor this summer -- Adam entering the office and instead of distressed cries, grabbed the doc's hands leading them to the device to check the ears and saying "ear, ear" clearly. We went back to the hospital for ear cleaning procedures from swimmer's ear and Adam cooperated. Adam taught himself how to swim underwater. He taught himself to leap, to hop -- with a little help from his friends.

So while I reflect on all the things that Adam did this summer, even celebrate his growth, there is nothing more unclad than the sudden rush of the first school morning, and the first school bus to whisk him away from me.

"Bye, Adam, bye," I say frantically as the door begins to close, my hands waving, my face masked with a huge smile until he pulls out of my view. There is no other fuss. The bus driver has no idea in her quest to be on time.



So I guess yesterday was another measure of time, as Adam stripped himself of his clothes and made up for his ban on swimming by playing with the hose and then jumping on his trampoline.







The last day of summer, the final days of his baby years. His naked innocence peaking, and the relentless march of time.

Between Interruptions -- My First Review

Yesterday, my mother (yes my mom -- she is more vigilant than I am about finding these things), found my first book review for Between Interruptions where my contribution was also reviewed.

"Estee Klar-Wolfond writes eloquently about her autistic son, Adam, in The Perfect Child. 'There is no other normal but the normal we create for ourselves,' she says -- and we believe her."

While The Perfect Child reflects how I feel about Adam and how we have come to find our own perfection, I hope to continue to convey our journey honestly, and perhaps a little provocatively, as I write on. A journey is made up of bumps, falls and epiphanies after all, and maybe, just maybe, it might mean something to someone else at the end of the day.

You can purchase Between Interruptions from Amazon.com.