'It's not what you see. But how you see it'

This is a condensed version of an interview that appears in the January issue of BLOOM magazine. I don't think I've spoken to anyone who's made me stop and think the way Dr. BJ Miller does. Louise Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train's electric voltage arced to his metal wristwatch, resulting...

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Happy holidays!

Dear readers: I am off to England tomorrow to a small town not far from where this robin had its picture taken. I had booked this ticket to take care of my uncle in hospital there, but sadly he died last week. So now I will be staying at his home in the beautiful Suffolk countryside. The robin is appropriate because my uncle always sent us Christmas cards adorned with robins. Something I've noticed recently on the BLOOM blog: our...

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Focus on deficits masks a child's beauty

A highlight of the ethics conference at Montreal Children's Hospital was a parent panel. Nathalie Bouchard, above, was one of those parents. Here she talks about how a medical focus on deficits harms the relationship between parent and child. Nathalie was interviewed in a playroom at the hospital. I'm happy to report that shortly after this interview a tiny dog was brought in for 'pet therapy' and there were no more tears! Thank you Nathali...

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Still kickin' at Kumon

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Advocacy in an unfamiliar culture

Getting your child with disabilities services can be a challenge. But imagine going to bat for your child in a language you don't understand? And what if you didn't feel comfortable talking openly about your child's disability? These are just some of the barriers facing parents in the Canadian Somali community says Shukri Farah (above) in another BLOOM cli...

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This and that

Over 70 per cent of 1,148 respondents to an online survey by the UK's Contact a Family said they've experienced mental-health problems such as anxiety, depression and breakdown as a result of the isolation they experience raising a child with a disability. According to Forgotten Families, British parents report "a lack of social interaction due to difficulties working and not having the time or money to do family activities others take for...

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Costs, quality-of-life ratings put complex kids' care at risk

Pressure to contain health costs over the next decade will put the care of a small group of children with complex medical needs and severe disabilities at risk, says Dr. Chris Feudtner, pediatrician and director of the department of medical ethics at the Children’s Hospital of Philadelphia. “About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethics in...

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The demonization of the disabled

There is a climate of hostility towards people for whom life is already difficult and it is being fostered by politicians and journalists, writes Observer columnist Ian Birrell. The demonization of the disabled is a chilling sign of the ti...

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Swimming lessons

In the 1970s there were no special swimming lessons for kids with disabilities in Edmonton. My brother loved the water, so my parents registered him for swimming lessons. The staff looked at him and said that the teacher wouldn't have him in the class unless a family member was there to help Leo. My parents looked at me. I knew they wanted me to say I would sign up for the same class, and be Leo's helper. I told them what...

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'Burden' of complex kids not whole picture, ethicist says

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist! Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families...

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Does every child matter?

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011. Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise disabled children sometimes sit outside 'mainstream'...

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International disability day

Change your Facebook profile picture for the day December 3 to support the International Day of Persons with Disabilities. Use your own social network to raise awareness! How? 1. Visit the Holland Bloorview fan page. 2. Right click on our profile picture and select "save target as" in the drop menu. 3. Save the image on your desk top. 4. Go to your Facebook page and change your picture. Ask your friends to do the sam...

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A fate worse than death?

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities. One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability. A neonatologist in the audience made the following comment. “There...

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