BLOOM media roundup
Want to catch up on what the media is covering related to disability, parenting and health? Check out these recent articles we curated.
A new drug, injected once a day, appears to make children's bones grow, and is being considered a treatment for children with achondroplasia, the most common form of dwarfism. One mother at a town hall for Little People of America said the drug company was trying to '...tell my son, and my friends that they're not okay the way they are.'
Is there a right way to be deaf? The New York Times
'Throughout my life, I’ve felt like the object of a constant tug of war between the deaf and hearing communities. Although I’m rewardingly self-employed, married and highly literate, I still struggle in hearing-centric environments. ..On the other hand, when I spend time with deaf friends, I’m often chided by them for not being more fluent in sign language, or otherwise embracing a more culturally deaf way of life.'
'When the branch opened, a three-tiered fiction section only had a single staircase leading up to it and was unreachable by the building’s single elevator. The plaintiffs, the Center for the Independence of the Disabled and a Queens woman with mobility issues, say disabled people are also unable to reach the branch’s rooftop terrace and a reading space on the children’s floor.'
Make room at the table for difficult people The New York Times
A mother writes about how Thanksgiving dinner with her autistic son is not like a Norman Rockwell painting, but still holds moments of joy. 'Our son’s behaviour is not always predictable. But he is a deeply interesting person whose refreshingly different ways of looking at the world are gifts he eagerly shares.'
Great gifts for kids and teens with disabilities 2019 Love That Max
Ellen at Love That Max just published a holiday gift list for children and youth with disabilities. Lots of ideas, including recommendations by parents and therapists.
'In just three years, the percentage of students with disabilities rose from 2.7% to 4.6% at the 64 [American] medical schools that responded to the survey in both years.'
The power in sharing our stories With you in the NICU
Sue Robins, BLOOM contributor and author of the new book Bird's Eye View: Story of a life lived in health care, is interviewed about everything from her early days as a mom to a son with Down syndrome to her experience as a patient being treated for breast cancer.
A mother to two adult sons with cerebral palsy is concerned that the Ontario government has contracted with a management consultant to reduce the budget for Ontario adults with developmental disabilities. 'If I had to pay out of pocket, there is no way they'd be able to go to programs,' she says.
'Bowmanville father Chris Butterfield works seven days a week to cover monthly therapy bills for his four-year-old son Jackson, who was diagnosed with autism two years ago.'
Scots children at risk by unlawful block on disability equipment Third Force News
A UK study found that 56 per cent of local councils in Scotland and 50 per cent across the whole of the UK are blocking provision of specialist car seats for disabled children through the use of blanket bans. The study also found blanket bans on walkers, specialized buggies, arm supports and high-sided safety beds.
Ableism: The causes and consequences of disability prejudice Disability Visibility Project
Author Dr. Michelle Nario-Redmond talks about her new book (title in headline): 'People will come away with an increased appreciation that we all have hidden (and not so hidden) biases; we all neglect to consider how our privileges make us complicit in perpetuating inequality. But instead of feeling guilty or threatened by this, the book offers concrete suggestions for how to reimagine what’s possible for individuals, families and organizations to change false assumptions, to reach out to representatives, and to reduce prejudice in our classrooms and beyond.'
Juggling her brothers' needs and her own The New York Times
Destinee Gonazlez Gil's brothers have a rare genetic disorder. Tending to them has inspired her to become a nurse, but first she needs help preparing for the SAT.
'Between January and September...U.S. carriers reported having mishandled at least 7,747 chairs. That's an average of 29 times a day.'
Important reminder: 'I still have days that I struggle to get through," Ms. Palmer said. 'Even when treatment is done, it's never gone. It's never finished.'
CHEO opens first of its kind clinic for patients from Nunavut The Ottawa Citizen
A new clinic at the Children's Hospital of Eastern Ontario will serve some of the most medically fragile children in Nunavut, and includes patient navigators who will welcome and guide families in their own language.
Brilliant opinion piece by a disabled dad-to-be about his interaction with a health professional while his pregnant partner had an ultrasound. 'Normal' and 'perfect' and 'sorry' are a few words professionals should consider ditching.
Looks at the history of institutionalization and abuse of people with developmental disabilities in Ontario, and a new program at CAMH where adults with developmental disabilities teach health professionals.
Don't miss the fabulous video where she talks about growing up deaf.
Changing the game U of T Med Magazine
Tabletop games like Dungeons and Dragons are being used to promote social interaction in people with autism.
Did you know that this Giving Tuesday donations are being directed to Holland Bloorview's Family Support Fund? Families apply to the fund to offset the high costs of equipment, medication, transportation, adapted programs and respite care. Your gift will be matched thanks to a generous donor!