Jim Taylor's Columns - 'Soft Edges' and 'Sharp Edges'

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Published on Sunday, October 24, 2021

Autism study shakes preconceptions

Sunday October 24, 2021

 

Earlier this month, Canadian economist David Card received a Nobel Prize for an essay he wrote in 1994, examining how minimum wage, immigration, and education affect the labour market.

            Basically, he found that raising the minimum wage and hiring new arrivals had no negative effects.

            Although his conclusions have been tested, over and over, business owners still trot out the same old shibboleths. It’s common sense, isn’t it, that paying employees more will raise prices and cut profits? And that since there are only so many jobs out there, an immigrant has to take a job away from a Canadian. No?

            Tell that to Henry Ford. He doubled his workers’ wages in 1914 so they could afford to buy his cars. Fifteen million Model-T’s proved him right.

            If economic insights take that long to gain approval, how long might a doctoral dissertation on autism in young people take?

 

A medical “deficit”

            Yet this thesis may prove equally significant. 

            Jill Sanghvi wrote her thesis in India, for Vrije Universiteit in Brussels, Belgium.

            Sanghvi recognized that most studies treated autism as a “deficit.” That is, it rendered the person less than normal. Handicapped. Victim of a disability. 

            The words themselves have negative connotations. 

            So if that’s what you’re looking for, that’s what you will find. 

            These studies were all by non-autistic adults. Writing ABOUT, or FOR, people with autism. 

            Sanghvi resolved to do something different. Young people themselves would tell their stories. And she would not ask them about the “deficits” they experienced as objects of ridicule, bullying, or pity. She would ask about their “wonderfulness.”

            Instead of gathering reams of statistics in a quantitative study, Shanghvi chose a qualitative approach. She worked intensively with a small sample group: six children, aged 10 to 18. Five boys and one girl. All six knew they had been diagnosed with autism, and were willing to talk about it. Extensively.

            It took time to win their confidence. 

            And then the stories came pouring out. 

            But because these children don’t think in the same linear patterns, the same coherent logic as, well, “normal” children, simply transcribing their interviews made them look unfocussed, unclear, unsure of themselves. 

            So Sanghvi took a huge risk. She transcribed her interviews as poetry. Free verse, if you will. 

            Her mentor, Dr. Don Sawatzky, former professor of psychology at the University of Alberta, has supervised 83 doctoral candidates. It’s the first dissertation he has ever seen that presents its findings in poetry. “I don’t think it has ever been done before, anywhere,” he says.

            Sanghvi’s academic jury in Brussels agreed -- it had never been done before. But it took them only ten minutes conferring in private to grant her a PhD.

 

Battling against preconceptions

            As Sangvi notes repeatedly, the biggest problem for people with autism is not any “disability” of their own, but the near-universal assumption that they have a disability: 

             “For decades, literature about autism has been dominated by medical deficit discourses. What is missing within literature is the lived experience of people with autism; in particular, the voices of young people with autism. 

            “Accordingly… society mainly listens to dominant discourses that portray the experience of living with autism as a struggle and burden.”

            Later, she writes: “Autism is a social construct created by those who have knowledge and are in positions of power. That is why we find third-person accounts of autism … about deficits and interventions that could possibly bring people with autism ‘closer to normal’.”

            The girl among Sanghvi’s interviewees offered an alternate perspective:

Autism is just basically being different
No one is really regular
Everyone is a complete train wreck somewhere
but I am more than others
It is sporadic. I forgot what is said
Sometimes I do concentrate but that doesn’t mean
you are just up in the clouds every single day
I don’t know if it is a disability in my case
it doesn’t disable me from doing anything
So it’s not a disability.

            In another “poem” the same girl challenged, 

“You don’t know how my brain works 

Are you a doctor? Have you done an autopsy? It’s definitely not on me.
So you don’t know.”

            When I was young, deaf and blind children were segregated in a special school. Because they weren’t “normal.” They might disturb us. 

            That has changed, thank God. But we persist in thinking of people with autism, young or old, as different. Less than us.

            It takes a long time for one idea to replace another. Jill Sanghvi has made a start on that process.

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Copyright © 2021 by Jim Taylor. Non-profit use in congregations and study groups encouraged; links from other blogs welcomed; all other rights reserved.

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Your turn

 

Gloria Jorgenson sent me the shortest letter about last week’s column: “$600 million on an election we didn't need -- I wonder how many communities could have been supplied with potable water for that price.”

 

Tom Watson noted, “The city of Winnipeg draws most of its drinking water from Shoal Lake, more than 100 miles away. The water is then purified for drinking by Winnipeg residents. However, until 2019, the Shoal Lake First Nation operated under a boiled water advisory.”

 

But my column was not just about drinkable water. It was about our tendency to establish artificial divisions among ourselves. 

            As Isabel Gibson put it: “As a species we're very good at distancing ourselves from others, however we define them in the moment. Fr. de Souza had a good piece in the National Post on the vaccine mandates. He considers that they are going too far. As one example, hospitals with few or no COVID patients are banning unvaxxed visitors, even to the gravely ill, and even though they have on-site testing capacity.

            “At some point, it starts to look more like punitive action rather than public health.”

 

Valentina Gal thought I had wrongly lumped two groups together: “While I agree that Canadians have their own castes on a number of levels, I don’t agree on your conflation of real suffering with personal choice.  

            “Like the lower castes in India, our Indigenous peoples and others are placed there by circumstances out of their control.  For example, I was born blind.  I had no more choice in the matter than a child born on a poor reserve.  Furthermore, I went to school with disabled children who were blind due to some of the diseases you mentioned in your column.  They too were disadvantaged by circumstances out of their control.  The only option they had was to learn to live with them.  

            “When you put this together with folks being left out because they made a choice not to have a vaccination, I see red.  As far as I’m concerned, being left out is where they should be.

            “We’ve focused so much on our personal rights that we’ve left our responsibilities behind.  By refusing a mostly straight forward jab, the unvaccinated are not considering anyone but themselves.  Granted, things sometimes don’t go well, but that is part of everything we do.  The willfully unvaccinated put their family, friends and yes, even church congregations at risk, not to mention health care workers.  You should have tried being in the hospital in January for heart surgery at the peak of the pandemic, as I was, with no one allowed to comfort or speak for me.  

            “Please stop insulting those encumbered by the designation of ‘unclean’ with those who put their own little lives above the rest of us.  The time is long overdue for folks to stop being so self-centered.”

 

Lois Hollstedt might have anticipated today’s column: “There are many ways we talk, think and make rules about ‘them’ vs ‘us’ in our attempt to live together in civil society.  We try to find the ‘norm’ when we make rules and hopefully we are smart enough to change those rules when we have new knowledge.   But society often fails to react quickly when new knowledge or norms are known as in the case of clean water, Indian reserves, residential schools, tobacco & smoking in public, driving without seat belts, gun ownership, public/private health care, education of girls & women, vaccinations, democracy and so much more.

            “Why is that?  Is it because we don’t like change and it takes time for any new idea to be accepted?  Once we believe something and have new evidence presented some of us are more quickly able to accept the new and toss the old -- but others are not.  So we have slow, uneven, individual incremental change that leads to a new norm.  What we hope is that any new change is for the better for most people. 

 

I had to edit the next two letters heavily, purely for length. 

 

Steve Roney surprised me: “I agree with everything in your latest column. I couldn’t agree with you more in opposing the current reserve system as a caste system. It is exactly what Martin Luther King fought against. It is segregation. Indeed, it is worse than that. It is apartheid. ‘Separate but equal’ never works.

            “However, ironically, it is not caused by any hostility or ill-will towards the First Nations. The problem is more complex. The Liberal government of Pierre Trudeau proposed abolishing the Indian Act and the reserve system in 1969, in return for a cash settlement. The chiefs of Alberta rose adamantly against it. The federal government wanted to abolish residential schools as early as 1947. Here too, the Indian chiefs and band councils opposed it, and fought to keep the schools open up until the late sixties.

            “The problem is, these things are established by treaty; it is not up to the Canadian government. They must have agreement from the Indian chiefs.

            “Do the chiefs, in opposing integration, represent the interests of the Indians? This is at least debatable.

            “Why are there so often problems with drinking water on reserves? Isn’t this primarily the responsibility of local government? Why is this not an indictment of the band council, and the band council system?” 

 

Laurna Tallman: “In the past, tribal groups travelled to the places where the water and food they needed existed. Today, a legal territorial system ties them to particular places. From the standpoint of their traditions, the Aboriginal people are now allowed relatively small areas to stand for the formerly almost limitless lands and waters to which they had access. 

            “From the standpoint of the paternalistic system where the Canadian government is expected to do for Aboriginals what it does for the rest of Canada, the supply problems are preposterous. The inherent problems in these expectations have become entrenched: the traditions of what each group has been arguing about for several generations have obliterated creative or reasonable thinking on both sides. For example, the myth of ‘limitless’ supplies of anything in the past is not true. The first stories I read about the people in the Far North were stories of exhaustion, starvation, abandonment of their own weak members, and death. The benefits of ‘civilization’ pertain to the groups who have gathered together near the routes of supply. The efforts of people living in those areas to use aircraft to transport experts (nurses, doctors, even entertainers) and supplies (foods, clothing, tools, machinery, etc.) to the territories ‘reserved’ for Aboriginals also has its limits. The costs are far beyond the costs of supplying those closer to the lines of supply. 

            “While some of the elements of the Indian caste system pertain to the situation in Canada, I doubt that the comparisons are helpful…

            “No one considers it my right to return to the social circumstances of 500 years ago when my ancestors owned a castle and territory in England and enjoyed the privileges and responsibilities of the nobility… Our responsibility to extend the cup of water to someone in need remains, but also must be reimagined in these present circumstances.”

 

David Gilchrist remembered “watching my Dad’s Leprosarium take shape in Angola back in the 1930s, and listening to adults talk hopefully about new meds that seemed more effective. I, too, hope for the day when there will be a vaccine that does the trick. Having experienced the curse of Malaria, I was excited to read this week of a vaccine for Malaria: that has renewed my hope that one for Leprosy may yet be developed.”

            David responded to my aside:  "I wonder even more what made the staff at Indian Residential Schools so abusive.”  He noted, “It is the same motivation that leads some people to become bullies! But that is only PART of the story. Please don’t just say ‘the nuns’; it was only SOME. Just as the newspapers delight in telling the evils of society, and rarely trouble to pass on kindness and heroism (of which there is a lot in every society), the reports ignore the gratitude of some Aboriginals towards those truly caring angels who did all they could to make things easier for their students. 

            “I have taught in two Reserve schools -- one residential, one day students only. The only abuse I witnessed was from two men: one, the principal, and the other a minister! I found far more compassion and true caring among fellow teachers than among some administrators. Just as it is wrong to put all Aboriginals in the same basket, it is equally wrong to lump all educators together.”

 

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TECHNICAL STUFF

 

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PROMOTION STUFF…

 

To use the links in this section, you’ll have to insert the necessary symbols. (This is to circumvent filters that think some of these links are spam.)

            Wayne Irwin's “Churchweb Canada,” is an inexpensive service for any congregation wanting to develop a web presence, with free consultation. http://wwwDOTchurchwebcanadaDOTca. He set up my webpage, and he doesn’t charge enough.

            I recommend Isabel Gibson’s thoughtful and well-written blog, wwwDOTtraditionaliconoclastDOTcom. She also runs beautiful pictures. Her Thanksgiving presentation on the old hymn, For the Beauty of the Earth, Is, well, beautiful -- https://www.traditionaliconoclast.com/2019/10/13/for/

            Tom Watson writes a weekly blog called “The View from Grandpa Tom’s Balcony” -- ruminations on various subjects, and feedback from Tom’s readers. Write him at tomwatsoATgmailDOTcom (NB that’s “watso” not “watson”)

 

ALVA WOOD ARCHIVE

            The late Alva Wood’s collection of satiric and sometimes wildly funny columns about a mythical village’s misadventures now have an archive (don’t ask how this happened) on my website: http://quixotic.ca/Alva-Wood-Archive. Feel free to browse all 550 columns.

 


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Author: Jim Taylor

Categories: Sharp Edges

Tags: autism, India, Sanghvi

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