Over the weekend, Diane Coleman [pictured right] of Not Dead Yet passed away. She was an icon in our movement and – personally – my mentor and friend.
When you met Diane, you immediately recognized that she was brilliant, with the rare exception of her vocational rehabilitation counselor. Her VR counselor apparently found Diane a job counting commercials, so she could work and wouldn’t even need to leave the house. Diane had other plans which meant moving to California and getting both a law degree (juris doctor) and a master’s in business administration. Armed with a JD/MBA, Diane worked for the California Department of Corporations as an attorney and volunteered her time for the disability rights and independent living movements. She served on the board of the Westside Center for Independent Living (now called Disability Community Resource Center) and used her vacation leave to participate in ADAPT actions which were focused at the time on securing access to public transportation. Diane was an ADAPT activist and organizer who – with Tom Olin and Lillibeth Narvarro – started the Los Angeles chapter of ADAPT in 1987.
Diane’s activist heart took her to (just outside) Nashville, Tennessee with Tom Olin, Carol Gill and Larry Voss. When she left her position in California, her coworkers sent her off with a gift of a bullhorn and handcuffs!
Diane and Tom moved to an old schoolhouse in Tennessee. The schoolhouse may not have had functional plumbing, but it was strategically positioned within 500 miles of most of the continental United States and could be a base from which Diane could work to advance our movement.
Diane moved to Illinos and became the Executive Director of the Executive Director of the Progress Center – the Center for Independent Living serving suburban Cook County in Illinois in 1996. She served in that position for 12 years and – in addition to running a Center – founded Not Dead Yet, a national disability rights organization that engages in public education and advocacy against the legalization of assisted suicide and euthanasia. Her work on the issue is – without exaggeration – legendary.
As I understand it, while in Illinois, Diane met Stephen Drake – her perfect partner – who would become her husband. Each of them brought passion, intellect, and insight to the fight against assisted suicide. Together, they were amazing to work with. I really got to know them both in the late 1990s when CDR was thrust into the center of these issues because Strong Memorial Hospital had agreed to sedate and turn off the ventilator of a quadriplegic man named Bill White. Almost no one could understand CDR’s position that Mr. White was depressed and needed suicide prevention services instead of support in ending his life. The SMH Ethics Committee and representatives of the Catholic Church agreed that helping him die was the morally correct choice. Diane and Steve provided continual support – technical and emotional – throughout that campaign. They were a lifeline when Bill White died and his cause of death was declared to be a diving accident more than 30 years earlier.
Among the vast amount of work that Diane and Steve did, they mobilized activists to respond to the ableism of Peter Singer at Princeton, protest the World Euthanasia Conference in Boston, ensure that the Disability Community’s perspective was heard at the Terri Schiavo hospice in Florida, and ensure that Disabled people were visible at the trial of Jack Kevorkian. One of my favorite actions was the Not Dead Yet protest at the World Euthanasia Conference in Chicago. Not Dead Yet activists, many of whom had just protested for a week in Little Rock Arkansas as part of ADAPT, protested the conference. We went for our community, but also for Diane. Overnight, Disabled protesters snuck into the hotel and just as the morning buffet opened on the first floor, we brought every elevator to the top of the building and woke everyone up with our chants. Diane was thrilled.
Diane and Steve visited Rochester from time to time because he had family here. They joined CDR for a holiday party one year and Diane suggested that she and Steve might be interested in moving to Rochester to be closer to his family at some point. I began setting aside money to make hiring Diane possible. When we discussed the position, she was clear that she would be spending time working on behalf of Not Dead Yet. I told her that I had already understood that, and we were happy to support her and NDY. This was integral to our mission as well.
A couple years later, Diane joined CDR as our Director of Advocacy. For me, having “the one and only Diane Coleman” working in an office down the hall was a dream come true. She helped shape CDR’s advocacy and – for me – served as a sounding board for all sorts of issues. Diane was excited as well. Although she spoke about her time at the Progress Center with great affection, she confided that she appreciated letting go of the administrative work associated with running a CIL. This new role allowed her to focus on the things she really enjoyed doing. Although her work was serious, Diane was fun. She would dress up in costume for our annual accessible Halloween event and enjoy a glass of wine at the annual holiday party, punctuating the evening with her distinctive and wonderful laugh.
In 2011, she secured funding that would allow her to work for Not Dead Yet fulltime. Diane knew how much I loved having her at CDR, and in a very gentle way shared the news that she would be “moving on”. It was sad to see her leave her CDR position, but I was beyond thrilled that she could devote herself full time to the work of Not Dead Yet. She remained very involved in CDR. She joined our board and chaired our Public Policy Committee. Initially, she thought she would miss being in an office, but then shared that she really liked the benefits of working from home.
Although Diane wasn’t in our office on a regular basis, her presence continued to be felt. An iconic Tom Olin photo of Diane in full protest hangs outside my office. In it, Diane is sitting on the ground leaning back onto the seat of her wheelchair with a chain wrapped around her neck as part of the Baltimore protest in the late 1990s. Diane also donated a sculptural work of art by Jude Conlon Martin about assisted suicide. This piece sits outside CDR’s Boardroom and serves to remind us of the serious work we need to do to oppose assisted suicide. Diane also made the initial donations of disability-themed toys for display in our lobby. The collection was recently expanded and moved into a larger display case as part of our office upgrades and generates squeals of delight from young visitors.
In 2020, some individuals tried to use leverage over Diane to pressure her – as a CDR Board member – to fire me. Diane knew their allegations were unfounded, but felt that the best way to protect me, CDR, and Not Dead Yet was to resign from CDR’s board. Although she no longer served on our board, Diane continued to be a resource for CDR and me personally. She was always available. We could call her for almost anything, from her perspectives on policy to support when navigating the ableist healthcare system which would be quick to pressure Disabled people into ending their lives.
As I have reflected on losing Diane, I am grateful to have been at her side and had the opportunity to learn from her and some of the amazing people she connected with. In addition to Stephen, some of these people included Tom Olin, Deborah Cunningham, Bob Kafka, Stephanie Thomas, Gayle Hafner, and Marilyn Golden. I remember basking in the brilliance of a conversation between Diane and Tina Minkowitz where they discussed the ableism embedded in forced treatment and assisted suicide.
Diane deftly navigated complex issues in a country divided in a culture war where progressive people see ending our lives as a right while they deny Disabled people our freedom. In doing that, she taught us so much, and it is our responsibility to carry the work forward to the best of our ability.
Diane’s CDR family will miss her, but our hearts go out to Stephen and her family and those who are a part of NDY and the opposition to assisted suicide and euthanasia. Our sadness is just a reflection of how much Diane enriched our lives over the years. She may not physically be with us, but I believe she is with the ancestors watching over us and will continue to guide us in our work.
I would tell Diane that she had more skill and talent in a single finger than some of us could accumulate over a lifetime, pointing out that in addition to the JD and MBA, Diane could sing! In fact, I have an album (on cassette tape) of her songs, titled – of course – “Free Our People.” Her singing wasn’t just something she did for the movement. I have it on good authority that she could belt out Linda Ronstadt songs with the best of them. I find it reassuring that on a difficult day, I will still be able to listen to the voice of a woman who gave all of us so much.
Free Our People tape
Thank you, Diane.