Disability, Health Care, and Ethics: Conference

h/t to Claire Roy for the heads up.  There will be some explicit discussion of the Ashley X case, amongst other things of interest to What Sorts readers.

Disability, Health Care & Ethics – What Really Matters

Wednesday, April 28, 2010

The Maryland Health Care Ethics Committee Network
and the Law & Health Care Program (L&HCP)
at the University of Maryland School of Law

Disability, Health Care & Ethics -
What Really Matters

Wednesday, April 28, 2010
10:00 a.m. – 6:30 p.m.

Thomas B. Turner Building
Johns Hopkins University School of Medicine

720 Rutland Avenue

Baltimore, MD 21205
Register Online

Persons with cognitive and physical disabilities comprise a growing sector of our society. Yet, health care providers and ethics committee members may lack knowledge, skills, and insight related to disability rights and its impact on health care delivery and ethical decision-making. This conference is targeted to individuals who wish to broaden their understanding of the concerns and rights of people with disabilities in the context of health care encounters. Attendees will learn about the history of discrimination against people with disabilities and the rise of the “social model” of disability, current biases among some health care providers that disadvantage persons with disabilities, and knowledge, strategies, and resources health care professionals and ethics committee members should have or be able to access to appropriately respect disability rights at their institutions and in health care encounters.

Full details here.

Life and Death Matters

Life and Death Matters: The Immediate Threat to People Who Have a Disability and the Need for Action is a one day event that will be held in conjunction with the 57th Annual Conference and Annual General Meeting of the Ontario Association for Community Living on Friday May 28, 2010 in Richmond Hill, Ontario. Some of the Presenters (e.g., Barb Farlow, Catherine Frazee, and Dick Sobsey)  will be familiar to followers of the What Sorts Project and Blog. Continue reading

Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was. Continue reading