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Tom Watkins
Tom Watkins

Tom Nerney: A Self-Determined Life

April 13, 2018 

Not everyone who impacts public policy here under the Capitol Dome is a household name. Yet their contributions to changing how we treat people in need are no less significant.  One such man who has added value, made a difference and has recently passed away is Tom Nerney. One might ask, “Tom who?” 

Tom and I were more of passing acquaintances and although I knew less about him than others, I did know his work: Adding dignity and worth to all people who met him, especially those with disabilities.  The disability rights community—in fact, all humanity—has lost a giant in the struggle for full human rights and opportunities for people with intellectual and developmental disabilities (“IDD”). Tom was both a dreamer and a fighter. Tom captured the hopes of many when he would both plead for, and demand, equal rights for all.

Tom reminded us: “We must never forget that our goal is to be able to walk together as equals, to dine together as equals, to work together as equals. And, most importantly, to love each other as equals.” What has happened to persons with disabilities throughout history borders on the barbaric. People with disabilities were often treated inhumanely and shunned by society.

Tom Nerney had a way to actualize this quote from noted philosopher and existentialist, Jean-Paul Sartre: “Freedom is what we do with what is done to us.”  Clearly, there has been a lot of evil done to persons with intellectual and developmental disabilities throughout history, some the result of benign neglect by the state. Tom founded The Center for Self-Determination ( to help allow people to live an authentic and a self-determined life.

Tom Nerney was a brilliant visionary and pioneer.  He was an educator, an advocate and a fighter who wasn’t afraid to challenge authority. He fought for civil rights, inclusion, and self-determination. Tom saw the inhumanity of people not having choice or control over their lives. His life was dedicated to seeing people with disabilities have control over their resources, have a home to call their own, intimate relationships, meaningful employment – the same things we all want out of life. He advocated, educated, and helped set public policy that would someday put an end to the impoverishment of people with disabilities.

Tom Nerney

A selfless advocate and a powerful agent of change who embodied the spirit of The Arc – the old “Association of Retarded Citizens” – Tom served as Executive  Director of The Arc-Connecticut in 1976. In those days the only option for adults with IDD was to live in state institutions. Students with IDD were educated in institutions, as they were not allowed in public school.  Separate and unequal was the truth of the day.

Under Tom’s leadership, The Arc-Connecticut took the position that all people with IDD had a right to live in the community and that the state had the obligation to create a community system to accommodate people with IDD. As a result, The Arc-Connecticut sued the state to end the segregation of people with intellectual disabilities. After a bitterly fought battle, the system of community supports that parents and advocates have come to expect today was created. The antiquated, institutional State Training School, like we had in Michigan was phased out. The myth that state institutions were the only place “those people” could live was finally squashed.

Tears and Praise

Dohn Hoyle, former Chair, Arc-Michigan says this about his old colleague and friend: “Tom’s passion and persistence brought self-determination to the national forefront and kept it on the minds of decision makers. He cared deeply about people with disabilities and that’s why I refer to him as the ‘Granddaddy of Self-Determination.’ He was a pioneer that brought choice and independence for people with disabilities to the nation.”

Dohn’s sentiments were echoed by Jim Dehem, CEO of Community Living Services: “Tom was one of the most influential leaders in the field of disabilities.  Tom saw the system as the problem whereby people were denied their human rights, forced into poverty and held hostage to the opportunity to have a full life with the same aspirations that anyone else has. Tom fought for the right of all people to have a self-determined life. Self-determination is a standard where authority over one’s life is vested in the person and not the system.”

“As an organization with 45 years of experience advocating community-based care for people with differing abilities, we had the opportunity to have worked with Tom Nerny over the years. Although our interactions with Tom have been both intense and thought-provoking, there is no doubt that they have also been impactful. As evidence, MORC now works with over 1,400 people who have chosen us to help sustain their self-determined lives. For that we remain indebted to Tom and other pioneers in the movement”, said Dennis Bott, President and CEO, MORC, Inc.

Annette Downey, Executive Director, CLS Oakland County and a finalist to become the Executive Director & CEO of the Oakland Community Health Network, puts an exclamation point on Tom’s life saying, “Tom Nerney was so strong in his beliefs and so progressive in his vision for a better tomorrow for all people with disabilities.  I know I learned a lot from him over the last couple decades, and am very grateful for the changes he helped bring about in our world.  Tom taught me to know the difference between providing great services and supporting people to lead great lives.”

We all owe Tom Nerny a debt of gratitude for his lifelong commitment to full civil rights, inclusion and equal opportunity for people with IDD. Tom believed in his heart of hearts that it is better to go wrong in one’s own way than to not go right in someone else’s.  He was on a quest for an authentic life and for all mankind.

Michigan Leads

Michigan can take great pride in knowing it was the first large state to close all its state institutions for people with intellectual and developmental disabilities. Yet, we know the battle for self-determination and adequate funding is a never-ending fight, and it isn’t over yet.

The battle for self-determination and putting people over profits rages on. The state’s “298” effort to transfer nearly $3 billion of public money to the private insurance companies—which many parents and advocates fear would “profitize” services for people with IDD (intellectual and developmental disabilities)—remains a real threat. The death of Tom Nerney ought to stiffen the spines of all who care about dignity and a life well lived.

The disability rights communities’ collective hearts thoughts and prayers go out to his family, especially his wife Jean Fogelberg Bowen, another lifelong warrior and Tom’s partner in life and in the struggle for human dignity for all.  RIP Tom, knowing you gave peace to many here on earth. We will stand strong fighting for equal rights for all in your memory.

Tom Watkins served the citizens of Michigan as state superintendent of schools and state mental health director.He can be emailed at:, or followed on twitter at:@tdwatkins88


April 12, 2018 · Filed under Tom Watkins

5 responses so far ↓

  • 1 TIP Lady // Apr 13, 2018 at 8:30 am


    Awesome tribute. It is a reminder that people can have tremendous IMPACT by living their lives as a model for recognizing the dignity and rights of others. I have often believed that what you do speaks far louder than what you say.

    When you read the comments from people who had interacted with Tom you see that he had a powerful influence on their lives and the way they view Rights for people with disabilities.

    This man truly Made A Difference. His story of Impact, Giving Back, Standing Up, Speaking Out for those who cannot stand or speak for themselves reminds me of another unsung hero. That would be YOU Tom Watkins! One of my most priced possessions is an autographed copy of the book you wrote, ‘They Help Us Paint Rainbows.” Reminding us how PRICELESS our CHILDREN and their Teacher’s are.

    ~The TIP Lady

  • 2 Roger Dunigan // Apr 13, 2018 at 10:32 am

    Great tribute to a great man. Sounds like he contributed a world of good. May he Rest In Peace.

  • 3 Joe Nathan // Apr 13, 2018 at 11:20 am

    Great tribute to what sounds like a remarkable person. Thanks, Tom.

  • 4 Elmer Cerano // Apr 13, 2018 at 12:15 pm

    Tom Nerney helped us to think differently and to understand differently about our fellow humankind.

    Tom Nerney has made an important impact on my life. He will never be forgotten.

  • 5 Mark Francis // Apr 15, 2018 at 3:39 am

    There are many who work to help those with different abilities have an equal place in society. I appreciate the spot light on one of the pioneers of the current effort. Thank you to Tom and to Tom for sharing his story with all of us.



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