Thursday, December 10, 2015

The blame game: It's got to go

By Louise Kinross

Yesterday we ran a beautiful piece by Keith McArthur, about his family's nine-year search to get a genetic diagnosis for his son Bryson.

What jumped out at me was a paragraph about how Keith’s wife Laura had questioned whether she had done anything during her son’s pregnancy to cause his condition. Laura heads our client- and family-integrated team at Holland Bloorview.

“Laura has always felt like maybe the pregnancy was her fault—that she did something wrong when Bryson was in her belly,” Keith wrote. “The pressure on expectant mothers to be perfect is immense. Now she can finally let go of this toxic guilt.”

I had to go back and read it a couple of times. Laura and I had talked about our sons with disabilities before. At one point she told me she carried tremendous guilt. But I never interpreted that to mean she felt she had done anything to cause her son’s condition.

Because that was absolutely preposterous.

Mothers don’t intentionally harm their children.

I’ve written before about how historically mothers were blamed when a child was born with a disabilitythey must have sinned.

Today the message isn’t that we’ve had a “bad” thought, but that we haven’t taken care of our bodies. Public messages abound that suggest that mothers can prevent most birth defects by what they do—or don’t do—during pregnancy. For example, Five Ways To Have A Healthy Pregnancy and Baby
Of course this is ludicrous since the cause of up to 70 per cent of birth defects is unknown (according to the March of Dimes).

So when I read that Laura’s “toxic guilt” centred on whether she had contributed to her son’s condition it made me incredibly sad, and mad.

I’d just finished reading a chapter in Steve Silberman’s fascinating book NeuroTribes, about the history of autism, called “The Invention of Toxic Parenting.”

Silberman recounts how in a seminal paper on autism, child psychiatrist Leo Kanner suggested two conflicting causal explanationsthat children were born with the condition and that parents caused it: “While emphasizing the likelihood that autism was innate and inborn, he left the door open to a more unsettling possibility: that these children had been pushed into mental illness by their selfish, compulsive, and emotionally frosty parents, who tried to substitute poems and symphonies and catechisms and encyclopedias for the nurturing love they were unable to provide.”

Kanner suggested that the all-encompassing interests or “obsessions” of the young patients he saw—a key trait of autism—were not natural ones that stemmed from the child, but a bid for parental affection.

Silberman says Kanner’s views were informed by a theory that women who wanted a professional career unconsciously felt hostile towards the child that interfered with it.

He criticized what we today might call special needs "Mama Bears"—those who came to him well-versed in the history of their child’s symptoms. They were obsessive” he wrote repeatedly in his paper.

And in describing the families of the children in his paper, he writes: “In the whole group, there are very few really warm-hearted fathers and mothers.”

Hmmm. I wonder what scale he used to measure the temperature of the parents’ hearts?

Silberman notes that there was a political agenda for blaming parents for their child’s autism. “A condition that was inborn could not be prevented—it could only be ameliorated. Implicating parenting style in the etiology of his syndrome, on the other hand, would place child psychiatrists firmly at the centre of family life, giving them a role arguably more powerful than that of parents themselves: the ability to intervene therapeutically for the sake of the child.”

Not only do we have religious and public health rationales for blaming mothers (in particular) for their children’s disabilities, we have these psychological ones too.

When I tweeted a quote about Laura’s toxic guilt yesterday, a BLOOM reader tweeted back: “We’re still waiting for our genetic scan. Almost two years.” With the hashtag: #guilteatsyoursoul.”

I always thought my own sense of guilt about my son’s disability was something peculiar to me. I didn't realize it was something that crushes most mothers. Now I see how it seeps through our culture, infecting parents.

Last week The New York Times Magazine reported this story of an 82-year-old man, Frank Stack, who shot his adult son and daughter, both of whom had significant developmental disabilities, then his wife and himself. "Both Stack parents regarded his combat history as a possible reason for his children's disabilities," writes the author. "I think he carried that with him all his life," a caregiver is quoted as saying.  

Young adult author John Green (The Fault In Our Stars) posted an interesting video about his experience with mental illness, and how we tend to blame people for their disease (be patient, it takes a while for him to get to it).

“The central way we imagine sickness as something we must conquer doesn’t really apply to chronic illness, he says.

“I have a theory—I don’t think we humans like to imagine our lives as random. We need human lives to be narratives that make sense. So if we can’t find causation, we just create it. Like people get depression because they’re weak. Or they get diabetes because they don’t eat well. Or they have heart failure because they don’t exercise.

“All of that is totally inaccurate or overly simplistic but we want every effect to have a cause and when we can’t find that cause, we invent it.”

Of course that applies perfectly to common beliefs about women and the control they wield over the health of their unborn child.


Thank you, Louise.

This is all I can write right now. I just really appreociaet your presence in the world.