CT Council on Developmental Disabilities

The Connecticut Council on Developmental Disabilities is sponsoring a series of fifteen (15) workshops on “Life Threatening Public Policy” during 2008. The series is directed at members of ethics committees and patient advocates in Connecticut’s forty-one (41) hospitals. The public is invited to participate in many of the workshops.

Several series workshops are co-sponsored by Connecticut Developmental Disabilities Network partners. The Network includes the Council on Developmental Disabilities, Office of Protection and Advocacy and the University Center for Excellence in Developmental Disabilities at the UCONN Health Center. Council on Developmental Disabilities members include representatives of the UCONN Center for Public Health and Health Policy and the Family Health Section of the Connecticut Department of Public Health.

Public policies that threaten the lives of people with disabilities is not new. Recent developments that suggest such policies are gaining widespread acceptance. “Altruistic filicide” describes situations where a parent kills his or her child with disabilities. Articles have been published encouraging the use of the “growth attenuation treatment” undergone by Ashley X of Seattle in early 2007. Switzerland has become the favorite destination for “suicide tourism”. Prominent ethicist Peter Singer, Princeton University, argues that parents should have a right to withhold food and hydration from newborn children who have disabilities. Pre-natal genetic testing leading to the widespread practice of selective abortion suggests “eugenics”. Adoption of the Gronigen Protocol in the Netherlands enables “death by committee”, where a team of doctors select babies and other people with severe disabilities for euthanasia. There is also official tolerance for the use of painful, potentially deadly, aversive electric shock programs on people with behavior-related disabilities.

The series will heighten understanding of the vulnerability of people with disabilities to life threatening public policy and invite participants to respond. This series is intended to help identify and promote values and ideas that are crucial to the overall well-being of people with disabilities, challenge values that pose a threat to the well-being of people with disabilities, and provide thoughtful examination of matters of value.

The series will begin in the Spring of 2008 with a symposium on citizen advocacy with Tom Kohler, Savannah, GA, at the Farmington Public Library. Mr. Kohler will be signing his book Waddie Welcome And The Beloved Community. A symposium on genetic screening, decisions regarding selective abortions, genetic traits and the insurance industry will be held in the State Capitol.

The symposiums will be followed by a series of seven (9) workshops addressing lessons from the German euthanasia program, social devaluation and the killing thought, “wounding” life experiences of human service recipients, fundamental issues of restraint, quality of life and medical deathmaking, and euthanasia and physician assisted suicide, protecting the lives of hospital patients, and organ donation The workshops will be presented by Jo Massarelli, Marc Tumeinski, Jo Osburn and Stephen Drake from the Social Role Valorization Implementation Project, Worcester, MA. Mr. Drake is a self-advocate. He has co-authored and authored numerous articles on disability and eugenics. He is a member of Not Dead Yet and has represented Not Dead Yet on 60 Minutes II, MSNBC, Democracy Now and News Hour with Jim Lehrer. This series will be held at the Institute of Technology and Business Development, Central Connecticut State University, New Britain.

The seven-part series will be followed by three (3) symposia and book signings at the Farmington Public Library. The symposia include Harriet McBryde Johnson, author of Too Late To Die Young: Nearly True Tales From a Life, Wesley Smith, author of Culture of Death: The Assault of Medical Ethics in America and a workshop on the Not Dead Yet movement.

The Connecticut Council on Developmental Disabilities is a federally funded, governor appointed Council comprised of people with developmental disabilities, family members, service providers and state agency representatives whose mission is to promote the full inclusion of all people with disabilities in community life. The Council is charged by federal statute to engage in advocacy, capacity building and systemic change activities on behalf of people with developmental disabilities, their families and their communities.