Mama and Dad

I want to share a comment written last week on our most popular post.

The Invisible Mom, written by Sue Robins, has had almost 22,000 views and generated 80 comments.

It's about how mothers of kids with disabilities can face the same social exclusion their kids face: "In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids," Sue writes. "In the 10 years I've parented my son Aaron, I’ve never cracked that circle. I've walked past that circle hundreds of times and nobody has ever shifted—ever so slightly—to give me room to join in."

And not only do these 'typical' parents ostracize parents like Sue, she writes, but they seem to sanction 'leaving the kid with disability out' when it comes to their child's birthdays and other get-togethers.

Sue wrote her piece over a year ago, yet listen to how it hit this parent.

Do parents of kids without disabilities have any inkling that this is reality for many of our kids? If they did, would they care? Louise 

Thanks for writing this. It has been in my heart for years. Yes, I know too well the gaggle of moms and dads. Like a gauntlet to run every day.

Every year I have hosted a birthday party for my child, every year something fantastic: a bouncy castle, paid entertainment, tons of loot. Every year the kids came, sometimes even ones not invited. But the reciprocal invitations never arrived. This year, he turned 12, and only one child showed up, despite the party being held somewhere all kids love. And this one kid probably came because I pay him to do yard work. I guess at 12 they are all too cool to go to the "retarded" kid's party. My sweet loving boy spent his birthday in tears. How do you explain it to a child? I don't know.

By Louise Kinross 

I’m a little stumped.

I read this piece called Genetic screening to enhance IQ should be embraced in The Conversation. In it, an ethicist argues we should test embryos for gene changes associated with low intelligence (70-85) and discard them because of “the bad things” low IQ portends: poor job opportunities, low income, increased risk of poverty and welfare dependency, greater likelihood to drop out of school and increased chance of incarceration and being murdered (quite a mouthful).

This 2013 Psychological Medicine study seems to support the association between low intelligence and less happiness. Of almost 7,000 people, those in the lowest IQ range (70-99) reported the lowest levels of happiness compared with those in the highest IQ group (120-129). When asked to rate their level of happiness, 12 per cent in the lowest group said “not too happy” (that doesn’t strike me as a huge number. I don’t have the full study to look at what portion of the high IQ group said they were “not too happy.”)

However, the study authors suggest that it's not the degree of intelligence per se that leads to happiness, but the fact that people with higher IQs have better incomes and health and less mental illness.

But isn't stigma one of the main reasons that marginalized groups make less money, have poorer health and experience more anxiety and depression (I'm thinking historically of women, minorities and people with a range of disabilities)? What role does discrimination have to play in these outcomes?

Remember the 2012 French study that showed that even adults who outwardly say they accept kids with disabilities carry a negative bias against children with Down syndrome at an automatic, unconscious level (deduced through implicit-association testing)? In other words, they react to people with Down syndrome based on a negative stereotype they may not even know they have. “These implicit associations are the result of social values...carried by our culture,” says the lead researcher Claire Enea-Drapeau, a school psychologist in Marseille, France. “They are likely deeply embedded and difficult to break.”

However, in spite of the pervasiveness of automatic bias against kids with Down syndrome, this 2011 American Journal of Medical Genetics study found that nearly 99 per cent of 300 people aged 12 and over with Down syndrome say they are happy with their lives; 97 per cent like who they are; and 96 per cent like how they look. 

How does this finding fit with the Psychological Medicine research above?

Further, would we ever expect people in the general population to say they were almost 100 per cent happy and okay with themselves? The AJMG study seems to fly in the face of this statement from our ethicist above: “It is pretty clear that low-normal levels of cognitive function tend to reduce well-being.”

Then I googled IQ and depression and found this article about how the rate of suicide in undergrads at Harvard over a recent five-year period was two times the national average for college students. Wouldn't Harvard students be among some of the brightest? And, according to the earlier research, happiest?

I remembered this BLOOM interview we did with Holland Bloorview neurologist and autism expert Evdokia Anagnostou about how high IQ doesn’t predict happiness in people with autism. In fact, there's a high rate of anxiety and depression in youth and young adults with higher-functioning autism.

I felt like I was being buffeted back and forth between arguments suggesting that happiness was dependent on high intelligence and those suggesting it was independent of it.

And I started to think about how perhaps we were looking at this in a simplistic way. I was reminded of Harvard psychologist Daniel Gilbert’s Stumbling on Happiness—a book that looked at common blind spots in how we imagine the future. These include a lack of empathy that allows us to imagine an experience different than our own and a tendency to overestimate the negative impact of an event and underestimate our resilience.

Gilbert said this helps explain a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why most people assume they couldn’t be paralyzed and happy, even though surveys of people with quadriplegia show the opposite (in fact, sometimes they rate their quality of life as better post injury).
I wondered how much resilience on the part of children with low intelligence and their families might ameliorate some of the supposed negative impacts.

During this time I read A Healing Family, a memoir by Japanese Nobel Prize winner Kenzaburo Oe, about raising a son who was born with brain damage. In it, Oe keeps coming back to the fact that despite the challenges, having a son with intellectual disability came to define his worldview and enabled his family to adapt in ways that readied them for other challenges.

“Twenty-five years ago, my first son [Hikari] was born with brain damage. This was a blow, to say the least; and yet, as a writer, I must acknowledge the fact that the central theme of my work, throughout much of my career, has been the way my family has managed to live with this handicapped child. Indeed, I would have to admit that the very ideas that I hold about this society and the world at large—my thoughts, even, about whatever there might be that transcends our limited reality—are based on and learned through living with him.”

And further on: “On a more personal level, I can imagine a very concrete example of what happens to a society that shuts out its disabled by asking myself how we ourselves—[the Oe family]—would have turned out if we hadn’t made Hikari an indispensable part of our family. I imagine a cheerless house where cold drafts blow through the gaps left by his absence; and, after his exclusion, a family whose bonds grow weaker and weaker. In our case, I know it was only by virtue of having included Hikari in the family that we actually managed to weather our various crises, such as my mother-in-law’s gradual mental decline.”

I guess I'm not sure what I think anymore.

When my son was just a baby and I was madly surfing the net for anything about child development, I came across this book title: The Child Who Never Grew.

I didn’t know it then, but it was a seminal book about raising a child with mental retardation, published in 1950 by Nobel- and Pulitzer-prize winning author Pearl Buck at a time when intellectual disabilities were hidden. Buck writes about her daughter who never developed past the mental age of four.

Early on, the book title terrified me. I wasn’t sure if it referred to children who didn’t grow physically or developmentally. Growth is highly valued in our culture – whether in height or intellect – and I questioned whether happiness could coexist without it.

“Couldn’t we still be a happy family?” I asked my husband when Ben was three days old, and we were waiting to learn what syndrome he had.

Fifteen years later, I’d say “yes,” but I believe my understanding of happiness has changed, as well. I used to think happiness was the absence of pain; that you could somehow manoeuvre around pain, outsmart it, so that it never touched you.

Now I think of life as being like cookie dough with equal parts joy and sorrow, and the two inextricably linked. I’m not afraid of sadness the way I used to be, because I take it as an essential part of life. And I know that the ability to feel and appreciate goodness is heightened when we’ve experienced pain.

Buck, in The Child Who Never Grew, talks about “the inescapable sorrow” that attends parents of children with intellectual disabilities. When I saw the words “mental retardation” ascribed to my son in an evaluation at age 11, I railed all night, unable to sleep, and wept in my boss’s office the next morning.

But was it sorrow for my son – who had not changed one iota since the night before – or sorrow for the stigma of mental retardation that had befallen our family? Of all disabilities, intellectual disability is viewed as the most tragic and despised – even within the disability community.

I'm reading a book called Matthew – about a boy who was born the same year I was, in 1964. When we were both 3, I was thriving at home in Toronto with my brothers, dad and full-time mom. Matthew, who lived in England, was also thriving. But because he had Down syndrome – his mother was driving him to an institution.

A string of doctors – some famous, his own father and family friends were convinced Matthew’s presence would destroy the family and, in particular, damage his older sister.

Writes Anne Crosby: I...put in the motorcar...(Matthew's) blue pedal-car. He sat his constant companion, a velvet lady pig, behind the steering wheel. It was almost unbearable to sit beside him, witnessing the pleasure he was feeling as we drove toward the hospital. He liked being driven through the park and he was delighted that we had his car inside my car. "Two drivers, Mum."

That charming reflection of Matthew’s – on his way to what his mother later refers to as incarceration – makes me weep.

I have a child who has mental retardation, and, despite his challenges with academic learning, it’s the beauty of his personality, his spirit, his intelligence, his humour and his unique take on life that most defines him. He’s the kind of kid who could have triumphantly signed – because he doesn’t speak – “two drivers, Mum.”

I can't imagine living in a time when raising my son at home would cost me my marriage, family and friends, and pit me against doctors who said my child needed to be with his “own kind."

So I was taken aback when I read results from two new studies about public attitudes to people with mental retardation.

In Israel, more than 50 per cent of 750 adults said they would not allow people with mental retardation to live in their immediate vicinity, according to a survey published Friday by the Welfare and Social Services Ministry's Department of Care for the Mentally Retarded. The study also found that more than 50 per cent do not want their children to have contact with children with intellectual disabilities in school. Forty per cent believe children with intellectual disabilities should live outside the family home.

In Brazil, a new study of over 18,500 students, parents, principals, teachers and school staff in 500 public schools revealed that 98.9 per cent want to keep a social distance from people with intellectual disabilities.

In 2007, a national survey of almost 6,000 American middle school students published in Exceptional Children found that almost 50 per cent wouldn’t sit next to a child like mine on a school bus and 73 per cent wouldn’t talk to him about personal things.

When I was growing up, children with intellectual disabilities didn’t go to my elementary or high school. The Exceptional Children study indicates that students today also have surprisingly little contact with peers with intellectual disabilities. Less than 40 per cent had had a student with an intellectual disability in their elementary or middle school.

The researchers note that exposure is not enough to lead to positive attitudes. “Contact and exposure that provide youth with the opportunity to witness the competence of individuals with intellectual disabilities” is the pivotal factor, the study authors say.

Isn’t that another way of saying if only kids with intellectual disabilities could be more normal in their achievements, attitudes would improve?

Measuring a person’s value against a dictionary definition of competence seems to feed into the counsel that a famous child psychologist gave Anne Crosby, mother to Matthew, the boy with Down syndrome who was sent to an institution: “Here is the important child, the bright and whole one,” he said, nudging her typical daughter. “We can safely say the other is The Throwaway Child.”

It seems to me that we need to develop a new scale for measuring personal qualities that make us worthy human beings.

Families of children with disabilities in the UK feel shut out of society due to negative attitudes and a shortage of services, according to a survey published this month by the charity Contact A Family.

Nearly 70 per cent of 615 families said understanding and acceptance of disability in their community is poor or unsatisfactory.

This is significant because there’s a general public perception that we’ve come a long way in improving attitudes toward children with disabilities, yet the reality for these parents is that they often feel their child and family is misunderstood and left out.

Other findings from the study:

• Over 60 per cent of parents say they don’t feel listened to by professionals and that their role is not valued by society.

• Almost half said they lacked respite care that would give them a short break, and childcare that would enable them to work.

• The survey references a British study showing that it costs three times more to raise a child with a disability.

Does your child and family feel understood and included in most parts of everyday life? Or does your child and family feel stigmatized by negative attitudes or ignorance? What can we do to improve understanding and acceptance of children with disabilities and their families?

Majority of families with disabled children face prejudice, says survey