When Diane Coleman of Rochester, New York, was six, doctors told her parents she would die before the age of 12 due to muscular dystrophy.
When she was nine, doctors changed their diagnosis to spinal muscular atrophy (SMA) and said she would live longer. Recently, she had genetic testing, and learned she didn’t have SMA after all, but congenital myopathy. Either way, she has used a motorized wheelchair since age 11.
Said 60-year-old Coleman in a telephone interview, “My parents wanted me to get a good education and pursue a career, so I earned a law degree, a master’s degree in business, and began working as a lawyer in Los Angeles in 1982.”
There she became a board member of an independent living center and was introduced to other well-educated professionals with disabilities. Through their influence, she began thinking of a person’s disability not so much as a medical issue needing rehabilitation, but more in terms of societal discrimination. In 1985, she joined the disability rights group Adapt, which was pushing then for accessible lifts on public buses. Two years later, she was arrested at a protest.
She said, “Back then, I was working as a State of California lawyer and in my free time organizing an Adapt chapter. In 1989, I left the practice of law and spent six months traveling the country with disability rights photographer Tom Olin. During that time, I spent time with and was mentored by (disability rights) movement leaders.”
After seven years running an Adapt chapter in Tennessee, where the primary issue was home- and community-based services, she moved in 1996 to Chicago. Months later, and in the wake of Dr. Jack Kevorkian having been acquitted in the assisted suicide of two women, she founded the nonprofit Not Dead Yet.
She said, “One of our (Not Dead Yet) efforts is to oppose legislation for assisted suicide and active euthanasia. We feel equal rights includes equal suicide prevention. They shouldn’t be carving out old and disabled people and giving them suicide assistance and giving everyone else suicide prevention. That’s a double standard. We’re also concerned about the involuntary withholding and withdrawal of life-sustaining treatment based upon disability. Hospitals, doctors, and family members are allowed in many states to make decisions that violate the civil rights of people with disabilities by taking away lifesaving treatments. This is another form of discrimination against people with disabilities.”