Because You're Worth It

I was at a function last week, honouring a CEO of a major Canadian bank. Amidst a room full of businessmen and women, and philanthropic leaders, the man was being honoured for his Words And Deeds. I listened intently to his speech, waiting for something I could cling to, some words that hit the heart of human rights issues for all people. I wasn’t surprised that despite some of the fine work by the man, the speech was a string of rhetoric meant for an audience largely invested in commodities. This CEO spoke of Canada as a tolerant and diverse nation. Tolerance, ethnic diversity, struck a chord with me, and I waited for an acknowledgement, a phrase that pooled human diversity and disability together. In contrast, diversity and tolerance were directly equated with global competition – the idea that we accept diversity, ethnic diversity specifically, as long as we can give it some economic value. Diversity, therefore, is acceptable only if it can contribute to society in the market economy. The hierarchy of tolerance, in my mind as I sipped a glass of sour conference centre wine, struck me. When, I asked myself, did we begin to equate tolerance, acceptance and diversity with global competition? Where do people who are physically or neurologically diverse fit into this economic universe? Where do people who cannot fit into it, who cannot globally compete this way, stand in his view? This CEO conveniently left out the disabled because within this framework, they cannot exist. If you cannot compete in the global marketplace, then you do not have value. But is this what he really feels?

I prefer to believe that this CEO is not purposefully omitting the disabled -- the issue is so much more complex and his speech shows how the discussion cannot fit into current frameworks of altruism and market economics (see Economy of Pity). I consider that the current worldview about disability and the construct of competition are incompatible. As we can see from previous posts, the ability to compete, equated more often than not with physical strength and uniform appearance, is similar to Karl Marx’s ideal of the perfect worker. Those who are unaware or unaffected by disability have an obscured notion about it, so there remains huge need to address these very issues with our leaders.

This is commoditization of life. Commoditization of healthcare, of just about every aspect of our current existence is based on markets. Parenting is a billion dollar industry. Getting frustrated with the endless frenetic calls to do something for our children, I inadvertently picked up a mothering book the other day called, 12 Simple Secrets Real Moms Know: Getting Back to Basics and Raising Happy Kids, by Michelle Borba, Ed.D. I don’t normally pick up self-help or parenting books of this kind very often. Yet, something in the title at this point of my journey in parenting Adam, was compelling. I have spoken a lot about how marketing calls us to do something for everything – how marketing leaves us as if we’re missing out on something and that we are not good enough as we are -- there is always something to "improve." Parents of NT kids are unhappy, kids are unhappy. Why? We are unhappy because we are learning that goods do not free us but indebt us, that happiness is intrinsic instead of extrinsic. These ideals have filtered to the autism community where society deems that our children and our parenting of them are not good enough, that if we buy someone’s intervention package, our children will learn how to fit into society. Question is, are we really satisfied the way we’re heading? Is learning to fit the right goal?

Consider these points of a generally exhausted society in the context of well-being or Quality of Life (QOL) which I will use interchangeably) taken from Borba’s book:

-Of the American moms surveyed, 70 per cent reported finding motherhood “incredibly stressful” (Ladies Home Journal, 2000)
-Depression affects 30 per cent of mothers of young children
-One-third of parents in one survey said that if they were to do it all over again, they would not start a family
-In the same survey, 53 percent admitted they felt significant resentment in making sacrifices as a parent
-In a Texas survey, 909 women said they found taking care of their kids about as much fun as cleaning their house, slightly less pleasurable than cooking, and a whole lot less enjoyable than watching TV
-Of the 1,306 moms in one survey, 95 percent said the experienced guilt feelings associated with parenting, and almost half said that the guild only increased as their kids grew older
-Two out of three adults say that parents are doing a worse job than twenty years ago (p.29)

Why? The author who posits these statistics from various US journals cites the following to blame for the frenzy:

-new knowledge about child development and how much nurture, the way we behave, affects who they will become;
-parents wanting their children to excel so they enroll them in umpteen programs;
-more entrepreneurs creating more to sell to kids, including programs;
-more media on parenting and motherhood;
-financial pressures to meet all these consumptive needs;
-guilt that we’re working to hard and not spending time with the kids and;
-parents wanting to be liked by their kids instead of saying no.

This idea does have a spillover effect once we receive that autism diagnosis. Psychologists need to diagnose, we hire expensive agencies and specialized schools to teach our kids, then hire lawyers to fight expensive suits to get additional life-long funding as a so-called “support” to autistic children, we buy books, travel to conferences, fund research, buy ribbons and more. Autism is now an industry unto itself with a lot of snake oil salesmen. Buyer beware.

So, when discussing Quality of Life (QOL) for people with disabilities and people with autism may be skewed because our very own is compromised with the commoditization of own lives. Ascribing value to life then, or to the very definition of QOL is mostly an extrinsic, objective exercise based on market ideals.

Assessing QOL with objective models is not a sufficient way to analyze the well being of people with autism. A subjective view of QOL is required from the person with the disability. We may, as RDI does, define quality of life as “to get married, have relationships and have a job,” and prescribe interventions that seek to change the person to fit these goals. However, those definitions of QOL may not be the same from person to person, not to mention for a person who is different. The issue with commodity, therefore, is an external one which alienates those with autism currently articulating what QOL means for them. If we impose an objective value of QOL, under the umbrella of belief that people with autism are incapable of understanding, or further, somehow deceive themselves into thinking they are happy as they are, then we are not accepting of people with autism. If we insist as parents, researchers and teachers, that interventions are necessary to help people with autism learn, instead of looking to the environment as the source of handicap, then we are not creating a tolerant or supportive society. Further, we are not honouring the way in which autistic people can learn.

I strongly suggest, that as parents, we consider that we have to reconceptualize our view of disability, and autism specifically, by turning to those with autism first, for a start. I also suggest that our goals should not focus on interventions to change the person with autism, but rather, seek supports and changes in the environment to support the person with autism. “The extraordinary variety of ways in which people can flourish suggests a comparable variation in the impact of abnormal functioning, an impact that people with normal functioning, notably health professionals, are notoriously poor a gauging,” says Anita Silvers from San Francisco State University. “[She] contends that the distorting effects of treating health as an indispensable practical good will be greatly exacerbated by the growth of predictive genetic testing in the coming generation, exposing previously hidden health deficits in a large portion of the population. Silver urges that health be viewed not as a good with instrumental value for almost all forms of human flourishing, but as an intrinsic good, on that, like art, will have radically different values when assessed from different standpoints.” (From Quality of Life and Human Difference, p.17)

If society views people with disability as a financial burden, then society will not build the supports for the disabled, but instead will seek to cure them. Further, educational supports for children with autism will not be made in the schools or by society-at-large if society is waiting for that cure. Organizations and some researchers rather invest monies on cures and pills that can harm people with autism as a long-term cost-saving measure. With this current goal touted by many major autism charities, it takes the burden of responsibility to change and to support autistic persons off society. It also threatens to take away a support network of fellow autistics from current ones, comparable, in argument, to aborting all fetus’ of ethnic diversity, thereby robbing a future of variant culture, mores and tradition, leaving those currently in existence, alone. This, of course, is morally repugnant.

“Disability is not a condition or a property of an individual, but rather, an interaction,” state David Wasserman, Jerome Bickenbach and Robert Wachbroit in the book cited above. Treating disability as a condition or property leads to commoditization of life, and the medicalization of disability then becomes a natural extension to this. In making a prenatal choice, another arguable extention of this notion, I mentioned in The Difficulty of Knowing, that genetics counselors and doctors do not provide enough information regarding quality of life, because they themselves lack a definition with any reference from families or disabled persons who can help qualify it. Instead, I was pummeled with a variety of genetic factoids about which I knew nothing. In a matter of a week, I was expected to make a choice whether or not to abort without knowing anything – just based on whether or not I wanted to raise a child with a potential disability. In a society that does not value this portion of our population to begin with, where disability is assumed to be of lower quality of life, one can understand why so many abortions may needlessly occur. My feelings about this experience upon reflection is supported by Tom Shakespeare who “finds that stereotypes, over-generalizations, and dubious assumptions about the impact of impairments on quality of life shape decisions about testing and termination. But he believes the more important bias occurs at the institutional level, and that the debate over prenatal testing tends to place too much emphasis on individual decision-making. Just because of the importance and difficulty of the choices that individuals must make, society has strong obligations to ensure that those choices are knowing and voluntary. In order to do so, it must provide adequate accommodation and support for children with disabilities, and balanced information about raising children with disabilities for parents making decisions about whether to test or to terminate. Reviewing the relevant social science literature, Shakespeare concludes that society fails dismally in all three areas.” (IBID pp.19-20.)

The authors of this book contend that the World Health Organization (WHO), “belies its avowed commitment to equality in several ways: by taking cost-effectiveness as its ultimate standard for rating health systems, by ignoring inequalities among ethnic and socioeconomic groups, and by assigning the extension of lives with impairments lower priority based on a flawed methodology for assessing the impairments, one that relies solely on the judgments of health professionals.” (IBID, p.20)

When debating rights issues we first have to investigate this notion further and make note of the very prejudices that endow our current beliefs about disability and human difference. We need to begin to spell out the basics of how people with autism wish to be viewed and treated. We need to make corporations and leaders aware of the complexity and the fact that all people may not financially contribute, necessarily, to the global economy, and they still have a right to be supported. Worth, value and contribution to society can take many forms. Heck, the volunteers of the world make no financial contribution, and when quantified, would make for a trillion dollar industry (noted in Bruce Mau's exhibition). So conversely, we all have value and we all have something to add.

The dialogue about quality of life – the objective and subjective views cannot be answered quickly. A review, however, is essential to understanding the complexity and the richness of those lives, those which are disabled. We must do this because we are all..."worth" it.