Nationally known disability advocate and professional, Ethan B. Ellis, passed away on Friday, March 22nd in Piscataway, NJ. He was 85.
During his career, Ethan assisted in the success of the Americans with Disabilities Act (ADA), served as Director of the New Jersey Council on Developmental Disabilities during a time when the state closed two developmental centers, was instrumental in elevating the individual rights and autonomy of people with developmental disabilities, and championed a systemwide shift to services directed by the individuals receiving those services and their designated family members.
“Ethan was my dear friend and mentor. I am proud and honored to have worked with him for close to 15 years. Ethan was tough, with a kind heart. I will forever be grateful for what he taught me and our endless conversations about life. Ethan was an activist up until his last days. Let us honor his memory by continuing the fight against injustice. I will miss you, my friend.” - Carole Tonks, ACI Executive Director
Under his direction, the Council held four statewide conventions political during presidential campaigns in 2000 and 2004, and the state Gubernatorial campaign of 2001, as well as several significant rallies and demonstrations during off-years tied to specific advocacy issues. The results of those efforts dramatically bolstered the state’s progress toward empowering people with developmental and other disabilities to get actively involved in advocating for their own political futures.
The Council’s Monday Morning Project promoting advocacy by and for people with disabilities paralleled the international People First groups that are still growing and exerting their influence worldwide, eventually joining that movement.
As an infant, Ellis was diagnosed with cerebral palsy. At two his parents reluctantly enrolled him in a new holistic program with then innovative approaches to occupational and physical therapy in Florida. He would spend up to six months a year at this program, often without either of his parents, until he was eight years of age when he entered the New Brunswick public school system. He often spoke of his memories from this period and the emotional trauma it caused him as a young child.
“I feel the sense of loss that NJ's disability community is experiencing. I am proud to have worked with Ethan and be a witness to the changes he advocated for in NJ. The challenge for us is to take what Ethan has taught us and not back down from the challenges we still face in our society.“ - Luke Koppisch, ACI Deputy Director
As difficult as those experiences were, they fueled his passion for changing societies paternalistic attitudes towards people with disabilities. Ellis believed that it wasn’t enough to provide services, housing and “daily activities,” for people with disabilities. Those individuals needed to be afforded the same opportunities to provide for themselves and have access to the assistance they needed to do so, the same as any other citizen. A key area for opening up those opportunities for him both personally and professionally was in education.
Ellis graduated from Highland Park high school in 1952 and went on to graduate from Oberlin College 1956. He moved to New York City, which began a long love affair with the alternative culture of that unique community. He earned his MA in Vocational Rehabilitation from New York University in 1958. His educational accomplishments opened up career paths for him that were not available to many people with disabilities in those times. He made the most of them.
In 1968 he joined the NJ State Economic Opportunity Office supporting local community action agencies and anti-poverty programs. In 1977 he was named Deputy Director of the Division of Advocacy for the Developmentally Disabled in the NJ Department of the Public Advocate, the first such division in the country. The next fifteen years he was engaged in a frenzied series of activities that led to great strides in legislation supporting the rights of people with disabilities. He was a regular on the Trenton-DC Amtrak circuit, testifying before Congress on a number of successful legislative initiatives, including helping to draft the Transportation Title of the Americans with Disabilities Act.
"Justin and I had a profound love, admiration and respect for Ethan and for his vision, militant advocacy strategies and concrete actions. He will be solely missed. We were so privileged and proud to work with him for so many years."
- Yoshiko Dart, widow of Justin Dart
He led a movement in the early 1990s to restructure the state’s Developmental Disabilities Council so that individual’s with disabilities and their families had a more significant and effective presence on the body, as dictated by the DD Act, the federal legislation establishing a framework for the rights of people with developmental disabilities and creating the councils nationally. Following the success of that movement he became director of the newly restructured council.
"He was a fierce proponent for ensuring that individuals with disabilities achieved successful and fulfilling lives at home and in their communities. I will miss his drive and tenacity." - Mercedes Witowsky, NJCDD Executive Director
Ellis and the Council partnered with the state’s Division of Developmental Disabilities to reduce the reliance on large institutions for residential services for people with developmental disabilities. In the wake of the Willow Brook scandal, where undercover reporting exposed some of the outrages possible when people are warehoused in large institutions with poor oversight, as was the case in that New York facility, there rose up a cry to scale back the large institutions. By the mid-90s New Jersey had not followed those national trends until the council and the division agreed to move ahead with the closure of two of the state’s developmental centers. This progress would not have been possible without Ellis’ tireless efforts to keep it moving in the face of significant opposition from center staff organizations and some parents’ groups afraid of any change of their sons and daughters’ situations despite the evidence of its overall benefits.
During his time at the council, New Jersey was also lagging behind federal guidelines for including students with disabilities in regular classrooms with their peers with the supports they needed to thrive in those settings. Ellis threw his support behind those efforts and he and the council’s staff were principal players in that effort—publishing two reports that detailed how “Separate and Unequal” the state’s educational system was for students with disabilities and how much that not only effected the individual but how it diminished the educational experience of all students.
Ellis retired from the State of New Jersey in 2006. In 2008, he was named Executive Director of the Alliance Center Independence and later founded NEXT STEP, an organization that seeks to transition the advocacy for people with disabilities to an assertive political activism. Ethan has been recognized many times for his sense of mission and determination, most recently as the first recipient of an award named after him: The Ethan B. Ellis Award for Lifetime Achievement. He was presented this award this past fall at the 8th annual NJ Disability Pride Parade, organized by ACI.
“Aside From the award and the kind words…you got me out of the house to see old friends and re-energize my commitment to the movement we both have supported so vigorously.” - Ethan Ellis on receiving the Ethan B. Ellis Award for Lifetime Achievement
Love came late in life to Ethan. It was during the period above when he met, fell in love with, and married Janet Chiorello. They were blessed with a son, Ethan James, who was born in 2006. One of Ethan’s great joys was getting to see his 100 year old mother with his son in her arms.
MEMORIAL SERVICE AND DONATIONS
At his request, there will be no official services at this time. A memorial service for family and friends to celebrate Ethan’s life will be held at ACI, 629 Amboy Ave, Edison, NJ on May 17th from 1 to 4 PM. Visit our events page for more info and to RSVP.
In lieu of flowers, his family requests that donations be made to the Alliance Center for Independence. Visit our Support ACI page for the many ways you can make a contribution. If you made a donation through PayPal, please let us know.
COLLECTION OF QUOTES AND STORIES
“Today was a wonderful experience. Aside from the award and the kind words that came with it, you got me out of the house to see old friends and re-energize my commitment to the movement we both have supported so vigorously. Surprisingly, it also brought our family even closer together.” - Ethan Ellis on receiving the Ethan B. Ellis Award for Lifetime Achievement
“People with Disabilities as Commodities“ written by Ethan Ellis
“Ethan is a man that I have always been in awe of. I am proud and honored to have worked with him for close to 15 years. He was my mentor, my teacher and is my friend.
When I was in my 20’s I went to a presentation, my son was recently diagnosed with Autism. Ethan was speaking on disability rights. I walked out of that presentation questioning everything I thought I knew about disability, which turns out, was basically nothing.
A few years later I had the honor of working for him. He challenged me and those he worked with. He was tough and demanded a lot from us because he saw potential in everyone.
Luke and I worked with Ethan at the NJ Council on Developmental Disabilities where he was the Executive Director. I always tell the story of how we went into Ethan to pitch an idea. Ethan wasn’t having it. He kept telling us it was a bad idea. I was getting madder and madder almost to the point of crying when I heard Ethan laughing. I said why are you laughing at me and he said “I wanted you to prove me wrong, and you did”. I was furious with him but that was Ethan, he would push you to the limit and make you do the work.
Ethan Ellis, Civil Rights leader and visionary. He marched with Martin Luther King Jr. in the famous Washington March in 1963 and was at the signing of the Americans with Disabilities Act. His friends Justin Dart, Bob Kafka to name a few. It was a treat when they would come to NJ to listen to them talking about social and economic justice.
Ethan Ellis, disability advocate/activist, past Executive Director of the NJCDD and ACI as well as the Deputy Director of the NJ Protection and Advocacy. Rehab Counselor, writer, community organizer, lecturer, visionary. His resume goes on and on.
He was a fighter which did not always make him friends. You would not want to be on his bad side! But he succeeded in advancing the rights of the disabled community in NJ while teaching others how to advocate for themselves. He taught Luke and I that it is always better to be right than to be popular.
Ethan was a story teller and people loved to listen to him. We used to say Ethan was holding court again. What most people did not know is that under that obstinate exterior is a very big heart.
Ethan and I would sometimes argue and other times we would ponder the meaning of life. But I always walked away learning something from him.“ - Carole Tonks, ACI Executive Director
“Ethan inspired the strong advocacy movement in NJ we have today. The challenge for us is to take what Ethan has taught us and fight the injustices in our society.“ - Luke Koppisch, ACI Deputy Director
“Twice in my lifetime I crossed paths with Ethan one as a civil rights activist and second as Director of the Alliance. During each experience it was rewarding. Ethan’s visions were truly rewarding to me, I learned a great deal from. I will miss him.” - Eulanda Brooks, ACI IL Specialist
“Justin and I had a profound love, admiration and respect for Ethan and for his vision, militant advocacy strategies and concrete actions. He will solely be missed. We were so privileged and proud to work with him for so many years. Ethan, we love you! Rest in Peace, Love, Power, Vision and Beauty to Guide Us, Motivate Us and Inspire Us to Create A More Just Society. We know your loving spirit will be with all of us always. We will keep marching on together.” - Yoshiko Dart, widow of Justin Dart
"I will always appreciate Ethan's unwavering determination to remove barriers for people with disabilities. He was a fierce proponent for ensuring that individuals with disabilities achieved successful and fulfilling lives at home and in their communities. I will miss his drive and tenacity." - Mercedes Witowsky, NJCDD Executive Director
“Awful thing about getting old is we lose our mentors who were once our leaders and our teachers. I lost Mike Oliver around the same time my last mentor and you are right as Justin said many times lead on and for every mentor learn on and from activist fight on. That's why our history is important so we realize that we don't just live in the moment but learn from each other as we pass our experience on. For me that is the most crucial thing we can do. Grow and educate new leaders, tell them how they got there and the sacrifice and commitment that Ethan made. Tell them they have history, heroes, and just ordinary flawed folks who changed their lives to make them free to live in the community. Teach them the fundamental lessons they taught you, practice it, and teach the next generation how to do that. As I get old, I realize that I am transitioning from an activist to a mentor from altruism to me and my family. It was never about me, Ethan, Mike Oliver, Babs Johnson, Wade Blank, Justin Dart, Jane Campbell, and the dozens of people I have been proud to know and work with…it was always about you. Lead on!” - Alan Holdsworth, Disabled in Action of PA
“Oh no. I am so sorry to hear about this. He was a great man! I have followed his work. My sincere condolences to his family.” - Kelly Buckland, NCIL Executive Director
“I first met Ethan in 1994 when I became a board member and treasurer. After being a board member for many years, Ethan became the executive director where I enjoyed working with him again. His advocacy for the disabled community so influenced me as to realize that I too could be an advocate, in my way, as treasurer to this date.” - Bernard Zuckerman, ACI Board Member and Treasurer
“He was unique!!” - James Dickson, ACI and NCIL Board Member
“Ethan Ellis was the director of my hometown CIL growing up. I'll always remember the advice he gave me when I came home from college one weekend, "Always remember that you are one of the lucky ones. And they'll do everything they can to make you forget that, to make it easy for you to believe that because you made it out, every one else is fine too. Don't believe them, don't be anybody's token - keep fighting." Rest in Power, Ethan Ellis.” - Ari Ne'eman
“He was a wonderful man who gave me a chance to work for the Council in 1996 as a writer. I’m still writing for them all these years later. He made such a difference for those of us in the disability community.“ - Maryann Hunsberger
”Ethan and I worked at the Public Advocate and then at Human Services. The article gets it correct. He was a fierce advocate and a terrific debater. He made more than a simple difference. He pushed the agenda to a higher plain. No easy task especially in the 1960s,70s, and 80s. His memory will be a blessing to all who knew him and benefited by his work.” - Ed Tetelman
We will be collecting quotes, pictures, and stories for Ethan’s memorial. We encourage you to share in the comment section below!