Disability Rights Leadership Institute on Bioethics:
Advancing the Disability Rights Perspective on Bioethics Issues

Marilyn Golden
Marilyn Golden
Months of work came to fruition on April 25 – 26, 2014 at the Crystal City Marriott in Arlington, VA. The first-ever Disability Rights Leadership Institute on Bioethics (DRLIB for short) brought together about 65 U.S. disability rights advocates to learn about and discuss issues as diverse as withholding and withdrawal of life-sustaining treatment based on disability status, disability discrimination in organ donation, the legalization of assisted suicide and the threat it poses to both the disability community and the public at large, the multiple mind-bending issues posed by new reproductive technologies (expertly addressed by DREDF’s Silvia Yee as well as Marcy Darnovsky of the Center for Genetics and Society), and so-called “wrongful birth / wrongful life” lawsuits.

Having worked to put DRLIB together with Diane Coleman, President and founder of the grassroots disability organization Not Dead Yet (NDY), along with the Autistic Self-Advocacy Network, the National Council on Independent Living, and other sponsors and donors, it was an amazing experience to see how well it turned out. It was the first time since DREDF’s magnum opus, From Principles to Practice, An International Disability Law and Policy Symposium in 2000, that I heard participants say over and over, “This is the best conference I’ve ever been to.” They’ll never know the many near-disasters we managed to avoid!

There are many parties to thank outside of DREDF, and that is happening through more formal channels. Within DREDF, I want to offer my deepest appreciation to Susan Henderson and Mary Lou Breslin for their frequent guidance, both political and logistical. Dave Nold was incredibly supportive with rapid-fire, beautiful website design and quick changes whenever needed. In addition, we had very helpful support by Stevenson Munro, Rhonda Neuhaus (who, based in DC, was a full-time participant in addition to her volunteer assistance), and Hong-yu Min. I hope I’m not forgetting anyone. Thanks also to Diane Coleman of NDY for parts of this blog entry. Read NDY’s DRLIB blog with its more in-depth analysis of this historic event.

One thought on “Disability Rights Leadership Institute on Bioethics:
Advancing the Disability Rights Perspective on Bioethics Issues”

  1. Marilyn, everything you said on CNN tonight, 10/13/14, was correct and you made multiple excellent points. Don Lemon was disgraceful not listening and disregarding the truth. More power to you Marilyn. God bless you for your work,and the work of the organization.

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