Monday, November 3, 2014

BLOOM media roundup

Happy Monday!

Looking for a read that will make you think? Check out the disability and parenting stories we've collected in the last week. Let us know if we missed a good one! Louise

When the diagnosis is rare, parents may know more than professionals
The New York Times
Great examples of why parents are essential partners with doctors in providing the best care for kids with rare conditions.

Discussing disabled sexuality is a radical act RH Reality Check
Why did the media largely ignore a section on sexuality and disabled youth in a critical update to guidelines on teen sexuality by the American Academy of Pediatrics?

Hidden population: Thousands of youths take on caregiver role at home  ScienceDaily
While most kids play sports or video games after school, more than 1.3 million American youth spent their free time caring for a family member with a disability or mental illness, according to this study. 

For people with disabilities, doctors are not always healers The Washington Post
'I saw blatant examples of unequal and insensitive care to patients with disabilities:' An emergency physician.

Toronto is a 'hostile' place for people with disabilities, academic says U of T News
A University of Toronto professor who studies accessibility says Toronto poses 'unfathomable barriers' to people with disabilities.

Wings for All offering special-needs families an airport dress rehearsal
The Washington Post
For three years the Palkodaty family avoided flying anywhere, convinced that it would be too much for their young son Tushar, who is autistic.

Woman with intellectual disability sexually assaulted on bus with worker nearby
CBC My Region
A 19-year-old Winnipeg woman who needs 24-hour care was sexually assaulted for 10 minutes before her support worker, a couple of rows away, noticed.

'I am different, that is good:' How an actor with Down syndrome is changing perceptions 
The Guardian
Sarah Gordy, who appears in Manchester play Crocodiles, breaks new ground by playing a character without a disability.

Mother wins right to end disabled daughter's life ITV News
A ruling allowing doctors to withdraw g-tube feeds from 12-year-old Nancy Fitzmaurice was the first time in Britain a child, breathing on her own and without terminal illness, was allowed to die.

Nancy Fitzmaurice, assisted suicide and assumptions
Girl With The Cane

Commentary on the Nancy Fitzmaurice ruling.

The work of outsider artist Judith Scott sheds light on living with disabilities
The Huffington Post

Institutionalized for more than 30 years and deaf and non-speaking, Judith Scott found her voice through art, forming intricate sculptures of yarn, fabric and other fibres tightly wrapped around an array of found objects.

'Butterfly child' dreams of the Northern Lights Ottawa Citizen video
Jonathan Pitre suffers from one of the most painful conditions known to medicine, a rare genetic disease that causes the skin to endlessly blister.

Kids with autism bullied three times more Disability Scoop
In the largest look ever at autism and bullying, American research shows that children on the spectrum are significantly more likely than others to be bullied.

Scientists implicate more than 100 genes in causing autism NPR Your Health
Researchers have identified more than 100 genes that are mutated in autism. These are spontaneous mutations, not ones passed down by parents. 

**Don't forget to sign up for a one-day workshop on bullying at Holland Bloorview on  Nov. 29, 10 a.m.-2 p.m. in the Conference Centre. Presenters are SickKids social worker Miriam Granger and lawyers from Stuart Law and Pro Bono Law Ontario. $10 registration fee. Register online.


Louise, here is article about a family whose 8 year old son was medically kidnapped. In the article it describes the system which is doing this to MANY FAMILIES.

Thank you very much for sharing that Gail! It is very disturbing on a number of fronts.