President/CEO, Not Dead Yet

ORGANIZATIONAL PLAINTIFF

Diane Coleman

Diane Coleman is the President and CEO of Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia. Prior to that, she served for three years as Director of Advocacy at the Center for Disability Rights in Rochester, New York and twelve years as Executive Director of Progress Center for Independent Living in Forest Park, Illinois. Ms. Coleman has presented invited testimony four times before Subcommittees of the U.S. House of Representatives and Senate. She is a well-known writer and speaker on assisted suicide and euthanasia, and has appeared on national television news broadcasts for Nightline, CNN, ABC, CBS, MSNBC and others, as well as National Public Radio. She co-authored amicus briefs filed in the U.S. Supreme Court and various state courts on behalf of Not Dead Yet and other national disability organizations on the topics of assisted suicide and surrogate health care decision making. She has a law degree and Masters in Business Administration from UCLA. From 2003 to 2008, she was a member of the adjunct faculty at the University of Illinois at Chicago and co- taught two graduate courses in disability and medical ethics. Ms. Coleman is a person with neuromuscular disabilities who has used a motorized wheelchair since the age of eleven.

Statement

Although I’ve used a motorized wheelchair since childhood due to muscular dystrophy, when I started having breathing problems, some healthcare providers have given me a look or even openly questioned if I want to treat a serious health issue. The two most frightening instances occurred during a respiratory crisis involving an emergency technician and later a hospital doctor. My husband pushed back verbally and I got what I needed to survive. Nevertheless, I know too many disabled people whose healthcare needs have been ignored, and I’ve especially heard this from disabled people of color or other marginalized identities.

My own medical history and need for breathing technology would lead most providers to consider me terminal. If I became despondent over the daily grinding frustrations of disability discrimination, or a new medical setback, or typical human problems with work, marriage or finances, I’m sure I could find two qualified providers to agree that I’m eligible for assisted suicide. I wouldn’t get the same suicide prevention as a nondisabled person.

Looking back, I first became concerned about assisted suicide when I lived in California and learned about a young disabled woman around my age who had a miscarriage, marriage break up and other setbacks. She asked for morphine and comfort care so she could die by refusing food and water and took her case to the courts and media. Disability advocates were the only people asking, “What about suicide prevention?” This was the beginning of a line of cases that treated suicidal people with disabilities differently than everybody else. Around this time, I also started protesting with the disability rights group ADAPT, first for the right to accessible transportation and then for the right to in-home personal care services. Then along came Kevorkian, Michigan’s Dr. Death, and two-thirds of his body count was people with non-terminal disabilities. That’s when Not Dead Yet began, in 1996 when we surprised everyone by chanting “Jail Jack” and helped put him behind bars. Between ADAPT and NDY protests, I’ve been arrested over 60 times.

Next came Oregon’s assisted suicide law, carving out older, ill and disabled people from suicide prevention that others can take for granted. The official data shows that everyone who dies by assisted suicide is disabled, some terminal, some not, and their reasons are unmet disability related needs, especially for in home care. Enough is enough. Now, with our federal civil rights laws, the ADA, Section 504, and the Constitution, we’re going to fight this most deadly form of disability discrimination. We are Not Dead Yet.

Diane Coleman

How do you pronounce your name?

Diane (Di like die and ane like fan) Coleman (Cole like coal and man like woman).