Paying Respects to A Pioneer for Disability Rights

A Life That Mattered: Remembering Elbert Johns--Led March of 3,000 to State Capitol

By Marty D. Omoto
Director/Organizer
California Disability Community Action Network

The world seems to continue on, seemingly without notice, even when tragedy strikes or someone dies. And yet, the world does notice. At least some of the world, some of the time.

But every life matters.

Elbert Johns died Monday morning, July 14, 2008 at Bloomington Hospital, in Bloomington, Indiana after a battle with cancer. He was 64 years old. To his family, he was a beloved husband and father who brought joy and happiness. For many others who knew him as a friend and disability advocate, he was a good and decent man, who we loved and respected. His death comes as a tremendous shock.

He was funny, he was humble, he was strong, he was passionate and he was modest. He was devoted and committed to his family and to the community of people with disabilities. And he will be missed. Terribly.

For those who did not know him or know of him, he was a human being who defined the words "unsung hero" because of his work fighting for the rights of children and adults with developmental disabilities to live in one's own home and community. He fought for the rights of self determination, inclusion and opportunity. Toward those efforts, he co-founded a website resource that connected critical information to tens of thousands of people with disabilities and their families across the nation.

But he did his work and advocacy often behind the scenes, without flair, fanfare or notice - but with great humility that comes with deep and unshakeable commitment.

Elbert Helped Us in Finding Hope With Humor, Humility and Common Sense

The world over the years seems to have become a much harder place to live and survive. Sometimes, in our fight and struggle to overcome barriers, to overcome discrimination and prejudice, to overcome injustice, to deal with sadness and loss, it is sometimes easier to give in or give up and believe that all hope is lost.

But Elbert Johns helped us find hope again. He helped us find that hope often with his dry sense of humor, a Midwestern sense of humility and common sense, but always with a feeling of empathy and compassion for those in need.

Robert F. Kennedy once spoke in 1966 of what one person can do to make a difference against injustice and oppression, and for those of us who knew Elbert, it is perhaps the best tribute to his advocacy and work:

"Few will have the greatness to bend history itself; but each of us can work to change a small portion of events, and in the total of all those acts will be written the history of this generation… It is from numerous diverse acts of courage and belief that human history is shaped. Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest walls of oppression and resistance.”

That was Elbert.

Elbert Helped CDCAN With First Protest Rally and March That Drew Over 3,000 People

And this was Elbert Johns: on a personal level, here in California in 2002, and early 2003, Elbert was invaluable in his help in our advocacy and organizing.

He was a tremendous friend and advocate in our fight here in California in 2002, 2003 and 2004 against massive budget cuts proposed by then Governor Davis and Governor Schwarzenegger. Four or five years later we are still fighting against potential cuts.

Some things don't change. And sometimes things didn't always work out in the ways we had hoped - but his efforts were always based on a real commitment to help and to make a profound difference.

He helped the California Disability Community Action Network (CDCAN) in California in our first big protest rally at the Sacramento Convention Center and march to the State Capitol in April 2003 that attracted over 3,000 people.

He led an advocacy training and meeting the following August 2003 that attracted over 250 people at the Secretary of State's Auditorium in Sacramento in preparation for the fall-out in more budget cuts after the historic California recall election.

He helped develop what has now become the CDCAN Townhall Telemeetings that since 2003 have attracted thousands of people with disabilities, families, workers and others. He helped so many others in other states in their efforts to be visible and effective in advocacy in fighting for disability rights - especially rights of self determination and inclusion.

For me personally - for the April 7, 2003 protest rally and march, just a week and half after losing my sister Alana, Elbert showed such compassion and strength, that made it possible for me to continue on.
There is a video of the protest rally and march and Elbert, wearing a yellow t-shirt (which each person designated as a "rally monitor" or organizer wore) with his backpack, and me together waiting for the right moment for thousands of people with disabilities and families and workers to cross the street to the State Capitol. He was like Moses with glasses and a backpack waiting for the redlight (and the police) to let us pass.

Elbert's help made a difference to us and CDCAN, to the advocacy of Arc of the US and Arc California and so many Arc organizations across the nation.

We will always remember his help.

We will always remember his life.

His Life Made A Difference

He made a difference in thousands of people's lives across the nation and in California - a difference that only a handful of people will know resulted because of his help.

For those of us who do know, let us remember Elbert Johns and remind others of his life and that his life mattered - to his family, and to countless thousands of people across the country and here in California.

I know I write often in recent years, and it seems too often - of good people dying. Some have been family. Some good friends. Some have been about people I did not know personally. But each had a life that mattered - and many lived a life that also made a difference and mattered to hundreds - or thousands of others.

That is why I am writing this about Elbert. His life mattered to us.

Our advocacy for disability, mental health and senior rights is about inclusion and independence but most of all about the basic proposition that a life matters.
Recognizing a person's life - and their contributions is something people often don't do enough when a person is living. Certainly it is something we can do when we are shocked, stunned and saddened into the reality of their death.

In remembering Elbert and his life, I recall the words of a Greek poet:

"Even in our sleep, pain which cannot forget
falls drop by drop upon the heart,
until, in our own despair,
against our will,
comes wisdom
through the awful grace of God."

For those who loved and knew Elbert, we will always remember that he did much to ease pain and suffering for so many others across this country. And we will always remember that because of his life, and through his work, and through his belief in God and his commitment to the rights of people with disabilities , he brought wisdom to us that overcame our despair.

To his wife of 39 years, Christina, and their four children and their families, let us offer our prayers, that will give them comfort to get through this difficult time of loss, and our thoughts to let them know how much the life of Elbert Johns mattered to so many people.

Our advocacy is always about a life that matters. In our prayers, let us always remember that.

The California Disability Community Action Network, is a non-partisan link to thousands of Californians with developmental and other disabilities, people with traumatic brain injuries, the Blind, the Deaf, their families, community organizations and providers, direct care, homecare and other workers, and other advocates to provide information on state (and eventually federal), local public policy issues.