Tuesday, December 3, 2013

'Disabilities' day and discrimination

It's the International Day of Persons with Disabilities.

If you're looking for an uplifting post, please see our piece yesterday about special-needs adoption.

At the moment, I am struggling with stories about discrimination against people with disabilities in accessing health care.

This piece is about a five-month-old baby with a heart defect okayed for a heart transplant, only to have this decision reversed two days later when it was discovered that the child had a genetic condition. The doctors said his genetic condition compromised his immune system, making him a poor candidate for transplant, and told the parents to take him home and love him till he died.

His mother went online and researched the syndrome, reading studies and contacting the expert her son's syndrome is named after.

The study authors and the expert said that the condition is not associated with immune problems and is not a reason to deny the child a transplant.

The syndrome is, however, associated with intellectual disability. And there's a long history of categorically excluding people with intellectual disability from eligibility for transplants because they're not seen as worthy of these scarce resources.

Please take a look at this excellent policy brief on the issue by the Autistic Self Advocacy Network called Organ Transplantation and People with Intellectual and Develpomental Disabilities.

And read the story to find out about the surprising, and happy, ending.

Now I'm off to a Special Needs Gathering organized by the Provincial Advocate for Children and Youth about "creative ways to amplify the voice of children and youth with special needs in Ontario."


You're a strong voice for us all, Louise. Your efforts are so appreciated. It's comforting to know people like you are out there speaking on kids' behalf especially when I worry about what discrimination our son might face as he grows older and isn't so "little and cute". Keep up the good fight!