Tuesday, June 23, 2009

'The Throwaway Child'

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.


I recently heard about a group of home owners in Toronto who are protesting the building of an "accessible" park in their neighbourhood. How, in this day and age, this could be a problem, is beyond me. I guess times really haven't changed. Everyone will have to take part in educating the masses. Bloorview is doing a great job at that.