The Assumptions About "Happiness"

The days in Toronto are bright and we received Adam's glowing report card yesterday. He belongs now to a very inclusive school -- a special and rare place from what we've experienced and heard about schools. Adam and I went for a picnic in the afternoon, and generally enjoying a little more time together as we wait for camp to begin. This child of mine observed by science as the child with "faulty wiring" who in fact, has many abilities.

As I appreciate the moment, despite the little sleep I've been getting this week, I stumble onto the stoop to pick up The Globe and Mail while drinking instant coffee because my coffee maker broke at 6 a.m., I turn to "Are you Happy? And does it really matter?" by Leah McLaren. I am not happy that I can't get my cup of java at six because I had to let the dog out and I otherwise would have slept in. In Leah's way -- her healthy dose of pessimism -- I would say no, happiness doesn't matter. As quickly as the days ebb and flow, our moods and circumstances can change. One day, we receive the glowing report card, the next, someone may put up barriers to Adam's access into another program. It's not all fun and games. It's just life. What we have today, we lose tomorrow, I once heard, and I try to remember that everyday.

"Joy of Autism" is meant to be a statement about our need accept what comes our way. Autism is neither good nor bad. It is just the way it is like life just is. So, if you've come looking for self help, you've come to the wrong place. The Joy of Autism is a place to work out how we can live and surpass the barriers that confront my son and individuals like him. My son is where joy does reside for me. Quietly as it should. The blog title is just a simple statement that I love Adam as he is, because in doing so, we can live a little more peacefully. Because in doing so, he can live a little more freely -- at least within the confines of his home. Because when we're together, its hugs and smiles and yes, struggles at times. And we try not to fret too much over them. It is a statement that we accept people and listen to how they feel about their oppression with whatever race, religion or disability community they belong. And it is a strong counter statement to those who engage in fear mongering.

With that joy and acceptance there is also anger. Anger that others ignore autistic people and the value of my son in other settings. Anger that it is so easy for people to let roll of their tongues that he is as if he's "in his own world," without a second thought. Lack of thought exists everywhere. It exists every time we never question a statistic, or a rhetorical line or even consider another point of view. Different cultures will correct us with our thoughtless use of prejudicial phrases and assumptions. Autistic people are correcting all of us all the time -- and yet, there is a public and even parents who think that because they are trying to help their children, the use of such language is okay, without critically thinking of the how it effects an entire community. Even worse, they think they are more correct than the autistic adults our children will one day become.

As Phil Schwarz said in his essay, "Building Alliances: Community Identity and the Role of Allies in Autistic Self Advocacy" from the book Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum, a book I highly recommend, he talks about aspects of Personhood, or identity are shaped by autism. Being an autistic person himself with an autistic child, he says that these aspects,

"are not intrinsically disordered. They may be atypical. They may require significantly different teaching and child-rearing approaches. They may even put us at an ergonomic, economic or social disadvantage in conventional society. But they are not all intrinsically defective. Often it is society's intolerance or lack of accommodation, rather than anything intrinsic to the autistic characteristic itself, that renders the characteristic disabling."

He also characterizes autism not just about atypical individuality, but acknowledges that many autistic people experience characteristics of autism that "are intrinsically disabling, sometimes profoundly so," and cites lack of oral or written communication and lack of self-help skills and effective judgments about safety issues as examples. Sensory distress and impulse-driven behaviour are other characteristics. But this is how is defines the problem of reconciling the identity aspects of autism to the disabling characteristics in the way that society handles it right now:

"It is difficult for parents and family of autistic individuals who are profoundly disabled in such critical respects to see autism as anything BUT those critical disabilities. This is particularly true of parents of children who appear to be developing normally up to a certain age and then begin to lose those skills. It sure sounds and feels and is lived like something that is 100% bad and, therefore, worthwhile attempt instead to eradicate 100%.

However, even autistic individuals who are profoundly disabled eventually gain the ability to communicate effectively, and to learn, and to reason about their behaviour and about effective ways to exercise control over their environment, their unique individual aspects of autism that go beyond the physiology of autism and the source of the profound intrinsic disabilities will come to light. These aspects of autism involve how they think, how they feel, how they express their sensory preferences and aesthetic sensibilities, and how they experience the world around them. Those aspects of individuality must be accorded the same degree of respect and the same validity of meaning as they would be in a non autistic individual rather than be written off, as they all too often are, as the meaningless products of a monolithically bad affliction."

Based on these extremes -- the disabling factors and atypical individuality, Phil says, they are more so disabling because society devalues the atypical aspects and fails to accommodate the disabling ones.

That my friends, is what we are working towards -- a place where the group we seek to "help," we listen to. We do not get offended when we are corrected by the group. We are the parents. We have a duty to listen because one day, our children may be the same people correcting others tomorrow.

In closing, about assumptions, I post the article written by Ann MacDonald a few days ago in the Seattle Post Intelligencer:

By ANNE MCDONALD
GUEST COLUMNIST

Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents' request, given a medical treatment called "growth attenuation" to prevent her growing. She had her uterus removed, had surgery on her breasts so they would not develop and was given hormone treatment. She is now known by the nickname her parents gave her -- Pillow Angel.

The case of Ashley hit the media in January after publication of an article in a medical journal about her treatment. It reappeared in the news recently because of the admission by Children's Hospital and Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only with the consent of a court.

At the time of the initial publicity about growth attenuation, Ashley's parents wrote on their blog: "In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."

I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley's.

Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damage at the time of my breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne, Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk.

Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."

Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. St. Nicholas offered little food and little time to eat it -- each staff member had 10 children with severe disabilities to feed in an hour. That was the roster set by the state and accepted by the medical profession. Consequently my growth stopped shortly after admission. When I turned 18, I weighed only 35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall.

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years.

In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value.

After I left the institution, an X-ray showed that I had a bone age of about 6, a growth delay almost unheard of in an 18-year-old in the developed world.

I was not only tiny but lacked any secondary sexual characteristics (a significant difference from people with naturally small stature). I was a legal adult, but I couldn't see over a bar, much less convince anyone to serve me a drink. I didn't see small stature as desirable.

My new doctors said that presumably I had the growth potential of a 6-year-old, so my new caregivers and I worked on increasing my size. My contribution was to eat everything I was offered. It worked. I started growing immediately, reaching a final height of 5 feet and weight of 120 pounds. That is, I grew 18 inches after the age of 18. Along the way I lost my milk teeth and reached puberty.

At the age of 19, I attended school for the first time, eventually graduating from university with majors in philosophy of science and fine arts. "Annie's Coming Out," the book about my experiences that I wrote with my teacher, was made into a movie (Best Film, Australian Film Institute Awards, 1984.)

Unlike Ashley, I'm now an ordinary height and weight -- but I don't get left out, nonetheless. Though I still can't walk, talk or feed myself, I'm an enthusiastic traveler. My size has never got in the way, though my hip flask of Bundy rum often causes alarm at airport security. I love New York for its galleries, its shops and its theaters; hearing Placido Domingo at the Met was one of the highlights of my life. Interestingly, Ashley is also reported as enjoying opera
-- maybe it goes with the turf.

Many otherwise reasonable people think that growth attenuation was an appropriate treatment for Ashley. In an Op-Ed piece in The New York Times, for example, moral philosopher Peter Singer wrote: " ... there is the issue of treating Ashley with dignity. ... But why should dignity always go together with species membership, no matter what the characteristics of the individual may be? ... Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."

Ironically, I'm a friend of Peter's, and I've discussed ethics and disability with him previously. Despite this, he obviously didn't call me to mind when he wrote about Ashley.

This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means "brain damage which isn't going to get worse." It's occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley's doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty.

When Singer wrote that, "Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognizes them. She is expected to have a normal lifespan, but her mental condition will never improve," he has accepted the doctors' eyeball assessment of Ashley without asking the obvious questions. What was their assessment based on? Has Ashley ever been offered a way of showing that she knows more than a 3-month-old baby? Only someone like me who has lain in a cot year after year hoping that someone would give her a chance can know the horror of being treated as if you were totally without conscious thought.

Given that Ashley's surgery is irreversible, I can only offer sympathy to her and her parents. For her sake, I hope she does not understand what has happened to her; but I'm afraid she probably does. As one who knows what it's like to be infantilized because I was the size of a 4-year-old at age 18, I don't recommend it.

My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own.

Anne McDonald is a writer and activist for the disabled