I Am Love

Lately, Adam is really interested in collecting objects, touching them, looking at them closely, adding them to his collection -- rocks, teddy bears (which he talks to and names), dolls, pretty things, trophies belonging to the older children of our house. So of course, I'm at a stage where like any other parent, I have to teach Adam that he can't have everything he sees -- that some things do not belong to him but to other people. Other things have to be paid for and we can't have everything we want. Also, some things are just so plain delicate, that you can't touch them, but look at them only.

Of course, this has begun when I feel that I can parent him less than I want as I am recuperating in bed. As other family members seem to struggle in watching him or enabling him with his device (I recognize that for me it is natural and for others, they have to learn by doing -- which they are quite successfully), I am frustrated. And then it happens, curiousity has broken glass.

Smash.

It happens once. A small glass sculpture by Montreal artist Susan Edgerly lay in pieces on the floor.

"No Adam," I say. "You cannot touch the glass."

He goes and does something else and a half hour later, another splattering of glass tinkling like bells on my limestone floor brings me downstairs again.

"No, Adam." I say a little more firmly.

"Don't yell at him," says my mother-in-law. But I do not yell. I am as firm as I would be with any other child except that I bring Adam gently upstairs and pull out his device.

I write, "You cannot touch and break the glass. Why did you do that?"

"because touch is interesting," writes Adam. Indeed, he's been more curious than ever -- touching everything and soaking it all in that I hate to take experience away.

"Okay," I write, "it is interesting and glass is very pretty. But you cannot play with glass and break it. You cannot break it."

"You are hot," he writes.

"Does hot mean mad?"

"yes"

"I am mad because mommy told you once not to touch the glass and you did not listen to mommy."

"I silly joke on you."

He begins to feel bad and pouts.

"Why do you want to make a silly joke on mommy?"

"because I silly," he begins to whimper.

I write, "I love you and I want you to learn from mommy. So when mommy asks you not to touch something, I want you to listen to mommy."

He turns his head towards me and looks straight into my eyes and then writes "I am love."

Now what do you do with that?

(The glass has now been put away).

Ignored

"If I participate, knowingly or otherwise, in my sister's oppression and she calls me on it, to answer her anger with my own only blankets the substance of our exchange with reaction. It wastes energy. And yes, it is very difficult to stand still and to listen to another woman's voice delineate an agony I do not share, or one to which I myself have contributed." (Audre Lorde, The Uses of Anger: Women and Racism)


It does not sound like progress is being made at IMFAR in London, UK, from the comments from my post made on autism research yesterday (see yesterday's post below). Non autistic researchers, profiting from parental fear --societal fear, even -- about autism does not wish to hear the autistic person -- be it aspie or non verbal autistic typing out a sentence. I wish I was at IMFAR because as a parent I am angry and I am using that anger, as Lorde suggests we do as she refers to the divide between white and black women:

"The angers between women will not kill us if we can articulate them with precision, if we listen to the content of what is said with at least as much intensity as we defend ourselves against the manner of saying. When we turn from anger we turn from insight, saying we will accept only the designs already known, deadly and safely familiar."

Autistic people, when they speak up about oppression are accused of being "too high functioning," and "not like other severely autistic children." Some parent will always stand up and say how their plight is worse than the person standing in front of them. And for what purpose? In order to squelch the words of autistic people who only want better for every autistic person everywhere. What do parents fear? This lack of services? This lack of respite? That won't happen if we truly support autistic people everywhere and include them in society.

Is the fear of one's own failure for having a child that you don't really want to have? One with "problems?"If so, whose problem is it, really?

What fear do the scientists have by being challenged by autistic people about ethics and standards? Do they fear their tenure, their jobs, their reputation, their paycheques?

Would it not service us all to talk about it openly and out loud so that this useless research -- much of it supported by Autism Speaks -- actually gets funneled into assisting and dignifying the rights of autistic people living today! Let's call it an excavation of honesty, as Lorde put it once.

"Any discussion about among women about racism must include the recognition and the use of anger. This discussion must be direct and creative because it is crucial. We cannot allow our fear of anger to deflect us nor seduce us into settling for anything less than the hard work of excavating honesty; we must be quite serious about the choice of this topic and the angers entwined within it because, rest assured, our opponents are quite serious about their hatred of us and of what we are trying to do here."

I wish I was at IMFAR because the autistic people standing up and speaking out are speaking for my son and his future and I stand beside them in their struggle.

Here is a recent picture of me two days after surgery in the hospital with my autistic son, Adam. I look as anyone would after major surgery. Look at the concern on his face. And I can imagine all the "experts" at IMFAR calling people like him "not aware" or "incapable of empathy."




They do not live and experience the likes of him outside their labs everyday. Some of them might even call him "severely autistic." Some might say "moderate." Some of you even have the nerve to write that your child is somehow worse off than mine and doomed to an institution, yet, when I meet those kids, they are even more verbal than my own son!! I watch ablest videos (I am compiling a post of videos that some parents and governments make to reflect the "worst" of their child -- stimming --- and this is the most horrible thing I can imagine a parent doing for a child in the name of "helping" them).

Yet, I am hopeful that the autistic individuals at IMFAR march one step closer to actually being heard. I am hopeful that it is not wasted energy, even though it feels so often to be the case.

I end with a movie you can watch this weekend: Music Within. The struggle has gone on for a very long time.

Does Autism Research Support Humanity or Human Deviance?

Does Autism Research Support Humanity or Human Deviance for Profit?

McMaster University is doing autism research. Autism Speaks raises a lot of money and some of that goes to our researchers based in Toronto and in Hamilton. Much of the money goes towards research to detect autism early or towards preventing or curing autism. The purpose of early detection is for early intervention. The concept of early intervention is derived from a medical model where the earlier diseases like cancer are detected, the better the chances of living. As a person recently diagnosed with early ovarian cancer, I can attest that in the case of mortality, I am thankful for early detection. However, in autism, the premise of early intervention isn’t that much different than the cancer model – children begin to undergo a rigorous process of “becoming normal,” and are taken out of regular daily life, because they are not deemed “regular.” They are viewed as sick.

So it is with skepticism and interest for me to read of the recent research done at McMaster University of eye tracking as seen in The Globe and Mail today. The idea is that at nine months of age, we might be able to detect autism because it is assumed that autistic babies do not follow changes in eye direction. The early diagnosis is to find those children at “high risk” for autism.

I didn’t know my son Adam was such a risk. A risk to whom? I have to assume he must be seen as a risk to society, even though our friends enjoy him and he is living quite well. If living well means to receive an aide to assist and a teacher who understands so an autistic person can learn, then I feel that that is where the money should be spent. I also can’t say that he would have passed or failed that eye-tracking test and it’s my guess that with the ranges of autistic people out there, the test will not be very reliable because there is not one general assumption in autism that is universal for every autistic person. Adam’s eye contact seemed okay, maybe a little inconsistent. It was his play and interests that were different – the ones that also gave him an exceptional ability to read and correct his classmate’s work because of his ability to SEE the things they cannot.

Further, “the probability of a baby developing autism,” as stated in the article, would not apply to us. While individuals may develop autistic-like behaviours, it’s not necessarily autism. I can attest that dear Adam has been autistic since birth and probably in vitro. His wide almond eyes were curious and clever from the moment he was born. His surroundings were already an assault on his senses.

So where does this leave us? All this money being spent on finding earlier interventions to make our children less autistic? All this money being spent on tests that do nothing afterwards – they do not advance inclusion or eradicate fear of human difference so that our children receive fair and equal education and opportunity. No one is really working to understand and respect how autistic people learn so that our kids can become part of the world. No, early detection is still eerily angled at eradicating human difference.

In her essay Age, Race, Class and Sex: Women Redefining Difference, Audre Lorde writes:

“Much or Western European history conditions us to see human differences in simplistic opposition to each other: dominant/subordinate, good/bad, up/down, superior/inferior. In a society where the good is defined in terms of profit rather than in terms of human need, there must always be some group of people who, through systematized oppression, can be made to feel surplus, to occupy the place of the dehumanized inferior. Within this society, that group is made up of Black and Third World people, working class people, [autistic and other disabled people], older people, and women.” [Brackets mine]

She notes how it is the underclass, or oppressed groups, which autistic individuals have described themselves, that are expected to bridge the gap, change, be cured, act normal, rather than society who also makes a concerted effort to understand, accommodate and accept difference:

“As a forty-nine-year-old Back lesbian feminist socialist mother of two, including one boy, and a member of an interracial couple, I usually find myself part of some group defined as other, deviant, inferior, or just plain wrong. Traditionally, in American society, it is the members of the oppressed, objectified groups who are expected to stretch out and bridge the gap between the actualities of our lives and the consciousness of our oppressor. For in order to survive, those of us for whom oppression is as American as apple pie have always had to be watchers, to become familiar with the language and manners of the oppressor, even sometimes adopting them for some illusion of protection. Whenever the need for some pretense of communication arises, those who profit from our oppression call upon us to share our knowledge with them. In other words, it is the responsibility of the oppressed to teach the oppressors their mistakes. I am responsible for educating teachers who dismiss my children’s culture in school. Black and Third World people [and autistic people] are expected to educate white people as to our humanity. Women are expected to educate men. Lesbians and gay men are expected to educate the heterosexual world. The oppressors maintain their position and evade responsibility for their own actions. There is a constant drain of energy which might be better used in redefining ourselves and devising realistic scenarios for altering the present and constructing the future.” (P.p. 114-115 Audre Lorde, Sister Outsider, from her essay Age, Race, Class and Sex: Women Redefining Difference)

I know of so many autistic individuals who fight the good fight every day -- who have to justify their existence and intelligence and disability as autistic people. Moreover, the idea of "pretending to be normal,"a title of a famous autism book, is echoed in Lorde's statement -- that the onus is on the oppressed group to change and no effort should be made on the part of the non oppressed group. That is the entire premise upon which most autism therapies are based and built.

Rather than focusing research on eradicating difference (in this case autism), it should serve to examine the way we include autistic people in participating in research and on boards of directors and on the way we use autistic strengths to educate and include autistic children in the classroom. (Must I mention AGAIN that no school board here in Ontario has an autistic person on it??) The Globe and Mail article on eye detection tests for early detection of autism does not make clear how it will better and enhance the lives of autistic people. It does not mention how to tap into autistic learning style and strength. It seems more clear that the onus will still be on the autistic child to change -- to appear and become less autistic, even if it's all just pretense.

“Too often, we pour the energy needed for recognizing and exploring difference into pretending those differences are insurmountable barriers, or that they do not exist at all. This results in false and treacherous connections. Either way, we do not develop tools for using human difference as a springboard for creative change within our lives. We speak not of human difference, but of human deviance.” (p.p. 115-116)

We must not refuse to see the challenges that autistic individuals face, and I find it surprising that people still think that disability is a bad word, or that accepting autism means we don't educate autistic people. We must begin to re-imagine disability and autism. We spend so much of our energy mourning, eradicating, detecting and in the meantime, our children get locked out of schools, even “special ed” schools, or they can’t go to camps with shadows and become excluded from so many programs and from life in general. Kids also generally get locked into categories -- special ed, normal ed, or gifted ed. But what of Adam who is both gifted and disabled? Believe me, there is no clear cut line when it comes to intelligence and disability. Autistic and other disabled people are not allowed to go to school with aide dogs or devices. They are viewed as a "disruption" to the classroom and are often turned away before even a first meeting. Many parents have called us up at The Autism Acceptance Project, disgruntled and upset with a system that simply excludes the autistic child or that separates them from their siblings. Furthermore, an ABA supported program which removes the child from the classroom is simply another form of institutionalization and segregation. It is also sadly a method which seeks to have a child respond normally, which is a kind of pretense as well, as opposed to enabling autistic response. It will not work to benefit autistic people in the long-run.

The barriers that exist do not lie within the autistic individual, although they do face many challenges. Most of the barriers lie in attitude towards disability. We spend so much money to affirm over and over again that autistic people are less valuable and deviant. Autism Canada has mimicked the Autism Speak’s style commercial to make autism appear like a horrible epidemic. They shamefully have objectified the autistic individual in order to raise money for the questionable research I have mentioned here. Adam and every other autistic individual need not/must not be objectified in order to be viewed as society’s surplus, or an object for research funds. So far, I’ve found little research that has actually shaped the lives of autistic individuals for the better.

Adam is the best. He works hard, he is smart, and he can type now. He is human. He is different AND equal. Once our autism research is developed on that premise of "different and equal" maybe, just maybe, our children will no longer be used for profit as the “surplus members of society,” or media entertainment, but rather, come to be viewed as valuable members of our community and thus, better able to contribute to it.


Reference:

Audre Lorde, Sister Outsider: Essays and Speeches, Toronto: Crossing Press, 1984.

Emboldened By Many Silences

I had my second surgery a little sooner than expected due to a lot of pain. Here I am last mother's day in the hospital. I am at home, tired now. Groggy as I write.

Audre Lorde said, "what I most regretted was my silences." She wrote about feminism and her breast cancer, and I too believe that staying silent is NOT useful when we have so much we have to learn and share with one another. "What are the words you do not yet have? What do you need to say? What are the tyrannies that swallow you day by day and attempt to make your own, until you sicken and die of them, still in silence?"

I try to test my silence and put it on the loud speaker.

Today I write:

The leaves of spring begin to glitter
the warm sun across my face
I try to heal under it
my womanhood taken
fear forsaken

I am more a woman today
than I was with a womb
more a woman today
with delicate crepe lines
weaving my hands that still work
more passionate today
than when I screwed to be loved

The sun bakes me and I rise
to learn
to heal
all the wounds
of a young woman

I rise to walk bravely
towards the power of this newer, older one.

-----------

And now for a little ditty:

In The Wake of ...

doubt, fear, criticism, I become stronger. I need to write and verbalize in order to move through experience, find joy, and learn.

Today, I borrow the words of Audre Lorde, for she speaks for me right now. Some people have explained that to be silent through their experience or their fear -- be it having an autistic child or a cancer, should be kept private. But this doesn't work for me. I have spent time considering this, and if I am wrong to make public what is so private for others. But what are we if we the village do not share, because we can make each other strong.

In "The Transformation of Silence into Language and Action," Lorde writes:

"I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood. That the speaking profits me, beyond any other effect...for it is not difference that immoblizes us, but silence."

And for those who have had such a difficult time understanding the Joy of Autism, (which I don't really care because it seems those people only have political interests, not emotional ones):

"And most of all, how do I fight the despair born of fear and anger and powerlessness which is my greatest internal enemy?

I have found that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces aligned against us. It means teaching, surviving, and fighting with the most important resource I have, myself, and taking joy in that battle. I means, for me, recognizing the enemy outside, and the enemy within, and knowing that this work did not begin with my birth nor will it end with my death. And it means knowing that within this continuum, my life and my love and my work has particular power and meaning relative to others."

I guess that's why I have been writing for books and this blog on autism for 3 years now. Of course, she is talking about her breast cancer, not autism, and I deal with a different kind of cancer. And I'm certainly NOT comparing autism to cancer, but it does seem relevant to compare her strength and will to find joy in her breast cancer and experience. It seems a shame that there are people who want to make autism comparable to cancer or a tragedy for political gain, not the benefit of autistic people, for our kids (and autistic adults) are full of such life. It is so important to move through despair.

Brief Thoughts on the Body

Lorde gives voice to her "feelings and thoughts about the travesty of prosthesis, the pain of amputation, the function of cancer in a profit economy, confrontation with mortality, the strength of women loving, and the power and rewards of self-conscious living." Lorde powerfully weaves together the three literary forms, allowing her to leap from raw expressions of pain to her inimitably astute social observations.




Guess what I'm reading? Sure, I'm a little scarred, but like Lordes, and after attending some of lectures today for the graduate program I am beginning in Critical Disability Studies, I do believe that cancer is just as much an industry as autism (moreso, actually) and the way we conceptualize the body as "doing and being done to." I'm not saying that industries and economies are inherently bad, but we can't just move through this blindly without realizing what influences the way we think and feel and HOW it does that. In this sense, I refuse to be yet another "victim." You likely won't find me running for the cure, but instead, talking honestly about experience.

This is just a beginning. I am thinking about the body, the social body, the "transgressive" body and how we choose to encounter it and how disability exists as an interpretation between bodies.

As for me, I have been amputated once and will be amputated again soon. I will be either temporarily or permanently disabled in some way. So, I also struggle to view disability/ability in a "corporeal normalcy binary" (Eliza Chandler, "Transgressive and Transformative Bodies: A Proposal for Evoking New Imaginations of Disabled Bodies for Disabled Youths") because we are never constantly one or the other. We are all sometimes disabled, and sometimes abled.

It's time aggressively destabilize current notions of disability. Contrary to what Harold Doherty wrote about me in a recent post about Reverent Wright and his speech Difference is Not Deficiency, for which I mistakenly wrote "deviance," disability writer Tom Shakespeare notes that normalcy reinforces deviance, so I extend this to ideas of abnormality, illness (as autism is often described) and so forth.

Instead, there exists diverse embodiment in our world. We are always shifting, and never resting in the binary.

I can say so myself. I can say so for Adam.

Things Are Going to Change

As I put my Adam to bed last night, I hated to imagine that I couldn't smell his skin -- still young-smelling -- or feel his soft hair against my face one day. I lay there as he slept, listening to his breath, thinking that I would give anything for him. My love for him is so gigantic that without him, it feels almost meaningless. I would hate to miss is not being around to feel it and see it anymore.

Things are changing so fast, that it feels surreal. It feels a little like when we parents get that first autism diagnosis, but also different because now I don't know what's going to happen to me. With our children, we learn to live with uncertainty, for we MUST find the joy in everyday. And I really, really want to do that now, even if my situation becomes worse. I am one who likes to prepare for everything, even though I am an optimist nevertheless.

Things will change fast, they always do. We can't stop the flow of time. I dedicate this song today to my family. I used to be a musician and a singer in my day. I used to sing in bands, play the piano and I sang and played this song. It is called WINTER and it meant so much to me when I was young, and now its meaning has taken on a slightly different note:

Blogging Against Disablism Day

I'm not going to do it because when it has already been done so exceptionally well, then I should direct you instead. Read Ballastexistenz today.

Also read Club 166 blog "Eugenics with a Smile."

Listen

Now it is no secret that I am going through something – borderline ovarian cancer. I consider myself very lucky. If I had waited and not followed-up with some symptoms last fall, I may have ended up in some Stage 3 or 4 situation, and my chances of living would be poor. Like all parents, my fear is that Adam would not have his mother and that I would miss all of the magnificent milestones he continues to have.



Here’s an excerpt from Michael Bernard Loggins, a man with developmental disabilities who wrote Fears of Your Life:

Fear #33:

“Fear of you never known you were gonna lost your mother is very sad and scary experience you have to face and learn from and you wonder why she has to die I love her – and I had loved her once while she were alive. Especially if she was the mother that raised you and the others through birth and you only wish that you could have done all you can to help save her life. It gonna be worse times and hard times for Michael Bernard Loggins and his sisters and brothers too. Especially when mother’s day comes.”

But my chances seem very good. Except for the unknown – what my next surgery may reveal, I have excellent chances of being totally cured for good. In fact, my first serous tumour was already taken out, and because of the high risk, I must have everything taken out. It’s no secret. Millions of people go through it every day, and they go on living. I know I am supposed to be emotional and mourn some kind of loss, and it may be premature for me to express any of it now, but I’ve had my wonderful child, I have four stepchildren who support him and who I have come to love deeply. While I can’t speak for how I will feel after my surgery, I can say that the most important priority I have is living for Adam and my family.

This post is about listening to your intuition. My intuition is something that I tend to listen to quite closely, and what kept me away from “experts” who really could have done more harm than good for Adam. I intuit people quite well – even though I may want to deny what I feel and “be nice” to people. That’s the way I was brought up -- to be nice. Sometimes I intuit things that frighten me because it sometimes means facing something difficult. I have even taught myself to ignore my intuition at times where people are concerned, only to have learned my lesson.

It’s the same now with ovarian cancer. “Listen to the whispers” is what ovarian campaigns tell women. What a wise line! The symptoms of ovarian cancer are so subtle that women usually do not discover them until they become severe. But I had some. They were small and quiet and they could have been anything. I began with ultrasounds – “it’s nothing,” said the doctors. “Pull out any woman your age from the street and they all have some kind of cyst.” But I wasn’t sure and I didn't feel they were right about me, yet I had doubts -- was I being paranoid? Yet, right from the time I had the first symptom and ultrasound, I had a feeling. I got to see my CT Scan. “You have double spine,” they said. “Look at that!” they were fascinated, pointing to the image, showing me. “Only one per cent of the population have a double spine!”

“But what about my cyst?” I implored, as it appeared dark and with some kind of mass beside it.

“Don’t get hysterical” said a secretary sitting in for the regular one at my geneoncologist’s office. I wasn’t getting hysterical. I was asking prudent questions. Why my CA125 kept going up; why I was getting uncertain results from my CT Scan. “You’ll be fine,” she said with a doctor’s assurance. She is not a doctor.

When I first visited the gyneoncologist in January, after the initial tests and after my wonderful GP seemed to "feel" something too, the doctor took a look at my healthy face and asked me questions. I have a lot of cancer in my family. But she said she wasn’t concerned. She did another CA125 and scheduled my MRI. “It’s probably just an endometrioma,” she said assuredly. CA125’s are unreliable in women my age. The test can rise with endometriosis, PMS, or benign cysts among other things. But mine kept rising.

Then, after the MRI, where I closed my eyes and imagined myself lying on the beach with a soft breeze for over an hour, I fell through the cracks for about another eight weeks. I heard nothing. I thought no news was good news…right? But in March, it was gnawing at me. I called my doctor. They had not received any results. I cringed at the thought of calling that secretary who called me hysterical simply for asking questions, and for making me justify not only my intelligence, but also making me feel guilty for taking up her time.

Immediately following my call, however, I was squeezed in to see the gyneoncologist again. “I was wrong,” she said, and Henry’s jaw dropped – he thought everything would be easy and okay. “It’s not an endometrioma. I am very suspicious.” So I had my first surgery scheduled the following week.

“It looks good,” she said after I was barely awake from the anesthetic, shaking until they bundled me in five blankets and administered morphine. Then, she was gone.

As I was (and am still recovering), I thought that my April 29th appointment for my pathology report would show up benign. Everything was supposed to be fine. Everything in the process of medicine goes so very quickly. Everything can fall through the cracks if you don’t follow up with our own health. It of course showed up borderline, as I mentioned yesterday. This time, she expressed her concern again, and recommended that I have another surgery to take out everything.

The entire time I felt it, even though everyone pressed me to doubt it. Maybe they were just afraid and wanted everything to be okay. Since that time, many of my girlfriends are getting themselves tested, but what I want to express to women is just listen to your own body. While everyone, including some of the finest doctors told me not to worry, and that I would be fine, there has been an issue with each subsequent visit. When my mother was sick for two years with pus running out of her eye, doctors told her it was nothing, until finally she was diagnosed with renal cancer. The point is, people are busy, most cases ARE benign, but it’s prudent to continue to pursue the feelings in your gut.

You have to listen to the whispers, be they physical or something deep inside telling you something. You even have to listen to all your fears and move through them, I think. For my health, listening may have just saved my life. For my son, listening to my own instincts may have, in many ways, saved his, for he is doing really well without popular “interventions.” (Early interventions, folks, are for serious, life-threatening diseases, not for people with disabilities like autism who deserve assistance and an education). The process of studying and educating him has been following him and trusting myself -- not listening exclusively to other people, but gathering the information and becoming selective as to who can assist us. No matter who tells you how crazy or hysterical you are for not doing something that is popular, weigh it all in carefully, study, and then listen to yourself and your child. There may be fear, but we must all use it wisely, not let it use us up. Fear is harming too many autistic children as it is.

As for any fears I have at the moment, here they are so written and to be used usefully, I hope, by anyone who cares to listen.

All Truth Passes Through 3 Stages:

First: It is ridiculous
Second: It is violently opposed
Third: It is accepted as being self-evident

--Shopenhauer

Why I'll Always Remember 2008

I relished in Adam's ability to form friendships with many children this year, and the many children who wanted (and continue to want) to be with him.





I learned who really supported me, even when we had BIG disagreements.
























I am still recovering from my first surgery (with the happy face pendant) and I never knew that a photo with Lance Armstrong could symbolize for me, what lay on the horizon.

Yes, that's right, I'm a writer so I won't hide it, and I don't want pity. I have to have another surgery as I have borderline ovarian cancer. The next surgery will ensure I will live to ninety.

You can bet on it.

And you can bet I will not let anyone complain or compare autism to cancer or a "death sentence," either.


'When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.' -- cancer survivor.

Difference Is Not Deficiency

Well how many of you were thinking what I was thinking yesterday while watching Rev. Wright's speech on CNN? "Difference is not deficiency" was his message as it related to race and religion. The man had me actually sitting upright in my seat, listening, laughing and enjoying every word and antic. I kept wondering why on earth so many people can't understand disability in the EXACT SAME WAY -- autism is a difference, not an illness, an abnormality or a deviance. Those people unfamiliar with my son's excited hand-flapping may not understand it, and may be so inclined to stare at it, and maybe even further inclined, by virtue of the crap they DO watch on Autism The Musical (I took issue with how some of the parents described their children as "ill." Otherwise, I absolutely LOVED the kids and found them so able and talented), or on CNN or whatever, that autism is a disease so that Adam's excited hand-flapping may seem like a pitiful thing to them, just as much as black skin was viewed back in the day.

Yet, as we were flying home from Florida yesterday, and he was watching a video of FRACTIONS (yes, fractions -- and he's just turned six years old), and he flapped his hands, I really thought nothing of it. In fact, I was joyful as it was something he was learning from (the video). And when he's happy, I'm REALLY happy. It’s his difference. When he’s happy and excited, this is how he will react to his environment. Now who on earth would want to “extinguish” that and why would that goal be so utterly important in those so-called early “intervention” programs? What are we “intervening” in? Aren’t we supposed to accept and assist? Please get rid of that term “intervention” – it’s so entirely insulting.

So it was such an irony this morning, when the big headline was "Hope For the Blind."(why I am turning this CNN on, I'm not so certain except to say I want to know what everyone is being "fed" in the realm of popular media)

Ted Turner -- please hear this: DIFFERENCE IS NOT DEFICIENCY. YOU CAN HAVE AUTISTIC NEWS REPORTERS, GUESTS -- YOU DON'T HAVE TO HAVE THE PRETTIEST PEOPLE. WE WILL ACTUALLY ENJOY WATCHING THE NEWS MUCH MORE IF YOU PUT REAL PEOPLE ON CNN.

Okay, sorry for that rant -- back to “Hope For The Blind.” I hope they get a new headline writer on CNN. Why not just say “new gene therapy offers possible sight for the blind?” They responsibly reported that the therapy is very risky, and only tried on 3 people successfully, and had actually harmed others in the past. Through the therapy, blind individuals cannot see fully just like cochlear implants don't enable deaf people to hear like hearing people do. Apparently, there are sounds, but not perfect hearing and in this case some light but not full sight. And still, not all blind people want to see. As Oliver Sacks has written and spoken about numerous times, many blind individuals don't understand why they would want to change a way they have been their entire lives!!! What a possibly frightening experience to have to relearn everything just because someone else thinks it’s better to see than to be blind?

Is this “intervention” and “therapies” for the benefit of others? Is choice a good thing here? That is, giving people the choice to have implants or not? Gene therapy or not? Or is this an expectation and a mandate under the guise of “choice?” In other words, there is really no choice at all. As long as we view the world as a homogeneous place where stronger and faster and the ability to compete is better (on the same playing field), then there is little choice, isn’t there?

As we move forward in our scientific discoveries, I don’t see the ethics getting any easier. But there’s one guide I do follow – it’s the one where when a “cure” is being preached because people think it’s better not to be disabled, or autistic, then it becomes grotesque. It feels Mengele, Nazi, and it frightens me that CNN as a channel has the power it does to dictate people’s lives and the way they think about everything. This is not “Hope for the Blind,” this is gene therapy being offered – and it could be the utter “Hell for the Blind” too.

When will our world understand that there are millions of people who live differently than many of us do? And not everyone wants to live like an American (or Canadian or whatever in the "first-world")? If we really want to know how the rest of the world lives and feels, then we have to watch their channels and read their books and listen, not assume.

I am happy to announce that I am a new graduate student of Critical Disability Studies at York University. I hope to continue discussing the differences in disability as they cross section with our discussions about race and religion, in much greater detail in the near future. Thanks to all of you who supported me through this.

The Autism Acceptance Project Update

Many people are emailing me asking to read Adam's blog as it will soon go private. This is wonderful and I thank you for revealing yourselves because Adam's safety is very important. If you are interested, please email me at estee@taaproject.com.

Aside from this, many of you may not know that The Autism Acceptance Project (TAAProject) sends out monthly newsletters and regular Newsflashes. Our e-mailing list is growing quite a lot and there's a lot of information in those newsletters that may not be in the blog or on the TAAProject website (www.taaproject.com).

If you are interested in receiving newsletters, please email me, being specific in the subject line (RE: NEWSLETTER) and we will put you on the list (estee@taaproject.com)

Precious Growth

As many of you know, Adam is really taking to typing. In two months, the typing has also instigated more talking in full sentences. It's as if I've offered him a window and now the floodgates are opening.

Let me begin by also saying that last week, Adam grabbed his own device in school and for the first time ever, asked for his father -- "daddy," he typed. He was asked again if he wanted daddy, and he typed that he did.

His magnificent shadow -- a young woman who has been with us for four years now -- told him that daddy could not be there and he was at work. She suggested that he instead draw a picture for daddy. Adam has drawn pictures before. Sometimes he writes mommy on them (well, he did once anyway), and he has definitely asked and typed for mommy a few times, but he has never drawn a picture for me without the bidding of some teacher's project.

Adam has never asked for daddy before and I wonder if it's because I've been in bed recuperating, and dad has had to step in with Adam a little more, that Adam has truly relished it. So, completely unaided, Adam did the drawing below for daddy -- he wrote his name, daddy's name, car, and drew his rendition of a car.

Needless to say, this picture is being treated delicately like an old Leonardo da Vinci drawing -- so light and delicate is Adam's hand that you can see his struggle for control -- which is why we're grateful for typing devices. If you saw him write letters by hand, you would also see his steely determination with the gargantuan challenge. This work of art will be well preserved, framed and displayed in an area for all to see in our home.





So a few things are happening in my mind these days about Adam, typing, communication and expression, and I wonder if many parents of non verbal children, or whose child's expression is delayed in various ways, feel it too.

First, there is a burst of language in sentences coming out of Adam as a result of starting our typing together. It's still not always clear, mind you, but he's talking more. It seems to have sparked something in Adam -- something that was already there, but perhaps didn't have the courage or know-how to come out, and it simply needed the little push. Think of it like opening a window in a room swirling with words, letters and thoughts, growing by the minute. That's how I like to think of it and the rate at which Adam learns.

Second, his drive to do that picture for his father completely on his own, I believe, also has to do with this window-opening as well as his need for relationship with his father, and just turning six and saying some very interesting boy-things, he needs a male role-model in his life.

And third, as a result of this new form of expression for us in this family, there are questions I have of myself as his mother -- the mother of a son first, a child second, and an autistic child, third.

This very intelligent little boy, with so many thoughts and conceptions of himself in the world, and IN RELATION TO THE WORLD, while I knew were always there without spoken language, has suddenly manifested in so many typed views of himself. It's not quite like having a child who is natural with spoken language -- the precocious little talker who always asks "why?" At least a parent gets a sense early on of the depth of responsibility in holding a child's ego like an egg in one's hand. Maybe (I can't say as I am the mother of one child and a step-mother to four whose own mother served them well), a parent just gets sort of immune to the child's ego. Maybe they learn ignore some of the precocious talking. Maybe they know when something serious is being said, and when something said is just an experiment.

For Adam, I believe that the same thing has happened and has always been happening, even before the typing. In some ways, it bothers me because Adam's ego and his thoughts and his way of thinking of himself in the world has always been there. All of those things I just mentioned, have always been there. His sense and ability to see people and know them -- like the child in the Emperor Has No Clothes -- has always been there. Yet, like many autistic people, he has been treated by many people (not all, thankfully, but many) that he never had the ability or capacity for such thought, such depth, such relationships.

My Adam, who notices how boys "should" behave and how he is "different", well -- tell me please -- how do you hold that precious little ego as it grows by leaps and bounds in your hand?

Out From Under

The Royal Ontario Museum in Toronto presents exhibition on Canadian disability history


The Royal Ontario Museum (ROM) is proud to present Out from Under: Disability, History and Things to Remember, a powerful exhibit exploring Canadian disability history. A display of 13 diverse objects reveals a rich and nuanced history that pays tribute to the resilience, creativity, and the civic and cultural contributions of Canadians with disabilities. The first of its kind in Canada, Out from Under was produced in collaboration with students, scholars and alumni from Ryerson University and will be on display on Level 3 of the ROM's historic building from Thursday, April 17, 2008 to July 13, 2008.