My Photo
Name:
Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Monday, April 03, 2006

 

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.

15 Comments:

Blogger Jannalou said...

An interesting post... a lot of thoughts in my head, which will probably come out in a post somewhere at some point.

A couple of the thoughts I was able to catch:

Re: Diversity
When I was in first-year university, I lived in rez. My RA signed me up for the "Diversity Club" (I forget why I couldn't go to the sign-up fair myself). I went to the first meeting only. The club wasn't about "diversity" at all; it was about tolerance/equality of homosexuals. Period. Diversity has a lot more to it than sexual orientation. I didn't go back because I was disappointed in the club's specificity of focus, though I'm sure most of the members thought I didn't go back because I thought homosexuality was a Bad Thing. (Which I did at the time, but I've always been willing to set aside differences of opinion or whatever and get to know people on their terms, so if they'd been about other things as well I would have gone back.)

Re: Parental Guilt/Programming for Children
I think it is awful the way parents are pressured to put their children into this program or that program. I've been seriously thinking about applying to adopt (it's not as costly in Canada as it appears to be in the USA), as soon as I have my financial situation under control. Part of that was deciding how to handle being a single mother, especially since I would apply to adopt a disabled/disordered child. And then I looked at my situation and realized that I work two blocks away from an elementary school, and I start work long before school starts and end right when it gets out (so no being late and easy to pick up afterwards). I am also in the unique position of having worked with disabled children, designed programs, and trained aides. So while I certainly can't do any official assessments and would need to have some specialists involved (I already know which SLP and which OT I would want involved, should my child need such services), I am certainly capable of taking the reports, designing a simple program, and training an aide or two (I even know where to get aides at) - if s/he even needs that kind of attention. (It all depends on the nature of the disorder and how it affects the child, and any number of other factors that I can't list now but would have to take into account.)

Re: Quality of Life
This was one of my many Masters' studies that I planned out back when I was going to be an autism consultant. I know for a fact that NTs constantly misread the mood of we non-NTs. My tone of voice gets misread, my facial expression gets misread, my body language gets misread... and "all" I have been diagnosed with is ADHD! I have also seen NTs misread the autistic children I was working with at the time - I didn't always know what the truth was, but I'm good at knowing when someone else's interpretation is incorrect.

4:55 PM  
Blogger Estee Klar-Wolfond said...

Jannalou,

What did you conclude in your QOL thesis?

5:01 PM  
Blogger Kristina Chew said...

Disability (if we can use that term) requires change on all levels, including even the notion of what "change" is; as a teacher in the Greek and Latin classroom, I do see the stirring of some change in my students as part of the work that I do.

And it's a good life we our chiseling out, by trial and error, by hope and love, for Charlie

5:06 PM  
Blogger Jannalou said...

Estee,

I haven't done the study, though I did write an outline. The plan was to evaluate various autism treatments based on all the usual criteria (IQ, developmental level, etc.) but to also measure both the parents' quality of life and the child's quality of life. I was expecting that I would need to come up with some kind of definition for quality of life, and a way to measure it (particularly for individuals with non-standard communication methods - by which I mean not speech or typing or pictures or sign).

It would have been a long-term study, looking at children from age of diagnosis through to adulthood.

There are problems inherent in the original design, and I think if I do decide to do my Masters and use the QOL study, I won't be aiming to measure effectiveness of treatments, but the effect of parental attitudes on quality of life for all members of the family. This, I think, might be more useful, especially over the long term, as parents' attitudes seem to undergo some metamorphoses over the course of raising an autistic child.

And now I have another idea, which is to have a secondary study, which would begin after the preliminary results of the first study were published. It would look at the impact of information about autism on parents' attitudes, and compare time of introduction of ND-philosophy to effect on attitude.

This will be particularly important to know if the first study shows that a positive attitude on the parents' part increased familial quality of life. (By positive attitude, I don't mean "constantly upbeat"; rather, I mean "following ND philosophy".)

I hope that helps to some extent!

(Now I want to do these studies!)

-Janna

7:43 PM  
Blogger Estee Klar-Wolfond said...

I am also looking into QOL and the way we can define it. Can we do it by combining objective and subjective analysis and perspectives? The subjective are different for everyone, and for families, as you so rightly mentioned, is transient and changes over time.

If we took a look at our personal definitions of well-being and what means QOL for us all, and then compared it to those definitions by autistic people, that may (or may not) be interesting.

Do you want to start right here?

7:51 PM  
Blogger Jannalou said...

I would love to start here!

What does quality of life mean... what is well-being...?

I don't know if I can begin to define the terms myself... such things are often difficult for me to put words to. But I'll think on it, and perhaps I'll be able to find words tomorrow.

11:25 PM  
Blogger Estee Klar-Wolfond said...

Do we begin with feelings like contentment? I can say that I am content but life is full of struggle which is par for the course. It makes me sad sometimes, it brings me joy. My well-being is tied in the ability to feel entirely human in all these feelings.

Social -- there is a lot of emphasis put on the social when we define the pool of what makes up well-being, QOL. I am not very social, actually. I go to functions and I have a close group of friends who get together occassionally. This can also go under QOL in terms of finding a group of similar people to come together with.

Love -- I think most people agree that we all need it. Some find it in friendships and others more intimate relationships, others through family.

Work -- I see work as something that should garner self-esteem. Self-esteem can also from living independently, but not necessarily. For those who must live less indepedently, I imagine that self-esteem can be achieved in other ways -- doing something independently.

Any comments? It's only a beginning, framed by my obective views, and also I start from an objective view, which I acknowledge can get more subjective the more we look at it.

7:29 AM  
Blogger Jannalou said...

I think that's a great start!

I think contentment is definitely a good indicator of QOL...

I think you're right about the social being an important component of well-being/QOL. It's different for everyone - a very individual kind of thing. I lead a fairly solitary existence myself, and I'm happy doing so most of the time. But that doesn't mean that I have a lower QOL than someone like my extremely outgoing younger brother, who seems never to be alone, and it doesn't mean that he has a lower QOL than I do.

Again, love is definitely an important component. People need to feel loved, and they need to love others. I think that pets should be in that list, though!

I would change "work" to "occupation", I think... not everyone is able to work outside of the home, and not everyone *wants* to work outside of the home! Occupation is more about the everyday things we do that give our lives meaning. (I think of it that way because an Occupational Therapist works on small things that most of us take for granted - things like fine motor control, hand strength, etc. - which are the things that give us the ability to do other, bigger things.) Some people work outside the home at a job they hate, but their QOL is no lower than that of someone who works a job they love, because when they aren't working they are occupied with other activities that they do love.

I like starting with the general, too. Begin generally and then get into the specific - that way you are able to be more objective throughout the process.

I think perhaps spirituality might need to be in this list somewhere? I don't say "religion" because some deeply spiritual people don't ascribe to any particular religion, and even atheists have a spiritual life.

Perhaps in order to define QOL we need first to define what it is that makes us human...?

10:31 AM  
Blogger Estee Klar-Wolfond said...

Yes, what makes us human is a great place to start. Also, starting from this vantage point, we have to acknowledge the humanity in all on an equal level.

Spirituality is broad -- can be religion, the metaphysical, faith in one thing or another, introspection -- it is very broad. That deeper part of ourselves we can access through the arts or in some area of special interest. It could be defined as the well within us that must stay full, that makes us whole -- otherwise ineffable.

Do we define superiority of species as those who have the ability to introspect to creatures that cannot? If so, we run the risk of assumptions again. Introspection, self-reflection is not always something we can see.

11:18 AM  
Blogger Estee Klar-Wolfond said...

Also, I can easier describe what my QOL is not tied up in by looking at what is painful, or what might disgruntle me:

- not enough to live on
- too busy making ends meet
- not enough down time//time for self-reflection
- not enough time with family and friends
-physical pain
-rejection by peers
-no access to supports that I would need, medical attention, employment, education


...have to run...anyone else want to try this difficult exercise?

11:25 AM  
Blogger SquareGirl said...

I tend to look at Maslow's heirarchy of needs in regards to QOL:
Physiological (eating, sleeping, etc.)
Safety
Love/Belonging
Esteem
Self-Actualization

I feel that many people confuse love/belonging with "social life", but I feel that love and belonging comes from true intamacy and acceptance. I suppose I don't have a big social life, but I have a family and friends who love me. I don't usually do group activities, but will instead opt for breakfast with a friend...to me at least, a higher quality more intimate interaction than say, going to a party. My biggest concern is that when it comes to individuals with developmental disabilities, only physiological and safety tend to be societies concerns and the other things are simply afterthoughts if thoughts at all.

5:24 PM  
Blogger Estee Klar-Wolfond said...

Your latter point is very true. Dr. Nehama Baum pointed that out in one of her papers on Quality of Life.

The care and protection of people with disabilities does not define a QOL. Supporting their way to obtain personal success would be more desireable.

12:09 AM  
Blogger Jannalou said...

The care and protection of people with disabilities does not define a QOL. Supporting their way to obtain personal success would be more desireable.

More desirable, yes... but not something people seem to care about.

It seems to me, at times, that the general public is unaware that it is even possible for a disabled person to have ideas about what they would like to achieve in his/her life, let alone actually do it.

"Personal success", it seems, is only something those without disability are allowed to dream of or achieve. And heaven forbid the need for outside assistance to achieve your dreams. (Ignoring completely the fact that so-called "normal" people also require assistance in achieving their dreams.)

Joni Erickson Tada, who I mentioned in a blog post a while ago, had dreams of being a sports star - she was a tomboy - until her accident. As she came through the resultant depression, her dreams began to change. And she has achieved both personal and general success, as a singer, writer, and artist... things that are difficult to be successful at even without the added challenge of quadriplegia.

11:01 AM  
Blogger ballastexistenz said...

Things like food and water are important to.

I'm wary of "objective" measures of quality of life because they are often inadvertently defined in ways that exclude some people who think personally that they have a good quality of life.

6:55 PM  
Blogger Jannalou said...

Yes.

I think Maslow was wrong, in his little heirarchy of needs. We don't need those physical needs met first. We need connection with another human being first. Because if we didn't need that connection, we would not die without it. People in third world countries who don't have the first two levels of need met would not be able to find joy in their lives.

(Taken from here.)

That's why I don't think you can describe someone else's quality of life... just your own.

7:28 PM  

Post a Comment

Links to this post:

Create a Link

<< Home