Ethical Issues, End of Life Conversations, and Developmental Disabilities
On June 1, 2011, the Council participated in a taping session with TPT (public television) to discuss end of life conversations. Twenty self advocates, family members, and allies were asked to share their personal stories about end of life conversations. TPT staff selected 54 different video stories that are posted at the Honoring Choices Minnesota website.
Congratulations to Twin Cities Public Television, recipients of the 2012 "Making a Difference" Award from the National Academy of Television Arts and Sciences, Upper Midwest Chapter for Honoring Choices Minnesota, a documentary about end of life conversations. The documentary was produced in partnership with the Twin Cities Medical Society. The Minnesota Governor's Council on Developmental Disabilities worked with TPT in this public education effort and participated in 54 video stories that shared the perspectives of individuals with developmental disabilities, family members, and allies: http://midwestemmys.org/20120829/2012-slumberland-making-a-difference-award-honors
The Council thanks Bill Hanley and Pam Palan for inviting our participation in this important initiative. Developmental Disabilities is one of 16 different identity groups included in the online archive of conversations. Please note: these stories are not closed captioned.
Thinking Ahead: Thank you to the California Department of Developmental Services for creating resource materials in plain language that can be used with self advocates to discuss end of life issues. This guide can be useful in assuring that self advocates express preferences about end of life decisions. Please note: this is not a legal document.
CNN Special Assignment: "Oklahoma Infanticide On April 6, 2011, Council members watched a three part series by Carlton Sherwood that described the lack of medical treatment for babies born with spina bifida in Oklahoma in 1984. This series demonstrated the fundamental difference about end of life issues for people with developmental disabilities compared to other groups. As a result of centuries of discrimination and oppression, people with developmental disabilities have been abused, neglected, and died as documented in Parallels in Time and Parallels in Time, Part 2.
The Council continues to work with Bruce Kappel in reviewing historical issues. Bruce Kappel prepared briefing papers on a series of moral and ethical issues specific to developmental disabilities. These brief papers include: guardianship, involuntary servitude, sterilization, Baby Doe, and euthanasia. To read more about these issues:
At a 1985 National Conference of the Canadian Association for Community Living, Bruce Kappel presented a paper, “Five challenges for the future: A personal perspective.” Words of wisdom were compiled along with the challenges that society faces, and how it views and supports individuals with developmental disabilities.
“Human Worth, A Matter of Value” was written by Ed Goldman in 1989 for the journal Interaction that serves Australia and New Zealand. At the time, Goldman was trying to build consensus about ending the need for institutions. The ideas are as relevant today as nearly 30 years ago. Unfortunately, he believes that end time may never come.