John R. Johnson, PhD. — South Dakota Center for Disabilities’ Director of Research and Development.

John R JohnsonJohn R. Johnson, PhD, started as a Special Education teacher in Ohio and Kentucky before completed his doctorate at the University of Illinois. John worked as a Research Associate at the Transition Research Institute and later as the Director of Evaluation for the National Transition Alliance. John worked at the Institute for Community Inclusion in Boston and focused on the competitive employment of adults with disabilities and as a facilitator for the National Transition Technical Assistance Center. He helped organize and lead the California Transition Community of Practice and worked with Partners in Policymaking, one of the oldest leadership development programs for disability advocates. John was the director of a project that offered a transition and supported employment specialization at San Diego State University.

John is employed by the South Dakota Center for Disabilities as Director of Research and Development. He is responsible for the development and implementation of research and evaluation. John also writes grants that focus on improving life for youth and adults with disabilities in employment, postsecondary education/training, independent living, self-determination and collaborative leadership, and disability studies.

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Text from Video

My name is Dr. John Johnson. I was born with a disability called spina bifida and I use a wheelchair. And right now I live in San Diego, California, and I’m also the Director of Research and Development for the South Dakota Center for Disabilities. Today I’m not talking as a paid employee, but as a person with a disability in commemoration of the 30th anniversary of the ADA. I’ve worked and advocated most of my life and all of my entire career for this civil rights support for all people with disabilities. I’ve been a community organizer, teaching community organizing. I’ve filed a major complaint with the US Department of Education’s Office of Civil Rights that led to major changes in access for students and faculty with disabilities by a large university.

It’s because of the ADA that we have a tool we need to protect our civil rights, but make no mistake about this. Our rights are either guaranteed nor protected by the ADA or any law. They are only as guaranteed protected as we directly and actively exercise and stand up for our rights. This means we also have to stand up for the rights of others.

Behind me you see a photograph you probably recognize. It shows the signing of the ADA by President George Bush, and sitting beside him from left to right are Evan Kemp, behind him you see Reverend Harold Wilke. And on the right side of president Bush, you see Justin Dart in his well-known cowboy hat, and behind him, Sandra Parrino. Many others also contributed to the passing of the ADA that and a few of the folks that were in the disability committee include Judy Heumann, Marca Bristo, Pat Wright, Lex Frieden, Paul Marchand, Wade Blank, Elizabeth Boggs, Liz Savage, Arlene Mayerson, and all these are major leaders in the disability community. A few have passed on, And we remember them in our hearts. And of course there were numerous legislators who supported the ADA. It truly was an example of bipartisan leadership.

So I want to talk about, or tell you a story, a little story about Justin Dart, his commitment to the passing of the ADA, his love and dedication protecting the rights of people with disabilities, and how it really demonstrated what a leader he really was. At the time of the signing of the ADA, I was finishing my doctorate at the University of Illinois. A couple of years later, I moved to Boston and met a guy who was very active his entire life in the disability rights movement. And his name was Fred Fay and he lived in Boston and he was a really close friend of Justin Dart. And Fred graduated from the University of Illinois a number of years before I did with his doctorate. So when I took the job in Boston in 1995, I had the honor of meeting Fred and working with him and Judy Chamberlain and some others who had worked on the ADA and worked on getting it passed.

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And through Fred, I was introduced to Justin Dart and got connected. And then I also became a member of the American Association of Persons with disabilities, which Justin founded. You can still become a member of the AAPD, just Google it online and you’ll find it. Anyway, I was in Boston for a couple of years. I ended up in the hospital and then moved back to Illinois in 1996 and in ’98, President Clinton awarded Justin Dart the Medal of Freedom. Now the Medal of Freedom is the highest civilian award that is given to somebody, a person in the United States, who’s made a particularly meritorious contribution to the national interest in the country. President Clinton noted Justin Dart’s contributions, or particularly his contributions to the passing of the ADA. And after we put the medal around justice neck, he removed, Justin removed it and took it off. And he gave it to his wife, Yoshiko, and he insisted that it belonged to everyone in the disability rights movement. Yoshiko was really active in the disability rights movement, supported it, and supported Justin.

And so a couple months later, I got a really unexpected piece of mail. I went out to my mailbox, found a padded manila envelope, and it had Justin’s address on it. And as I opened it, I expected to find information about a critical issue that I needed to go to work on and support his efforts, but instead I found a beautiful 8 X 11 certificate with the medal of freedom that he had received embossed in color. On the certificate and below that color embossed medal of freedom was my name in big bold letters. And below my name where the words, “This medal belongs to you.” And the certificate was signed by Justin and some other significant figures in the disability community. There was also a thank you letter from Justin that explained that he believed the medal of freedom belonged to everyone in the disability rights movement.

He sent this certificate and paid for the mailing and the production of this certificate out of his own personal funds. And he sent it out to everyone who was active in, that he knew, that was active in the disability movement, and this had to have been thousands of people. So it was an acknowledgement of my work with Fred Fay and others. But I have to admit to you that my contribution was really small and minor. Others in the group, did a lot more and were much more involved than I was. So I tell you this story because it shows what a true leader that Justin was and that he conferred the honor he received on those he knew who worked for and advocated for people with disabilities, regardless of how minor their or small their contribution was. He really was the essence of a transformational leader. And he truly was instrumental in the passing of the ADA.

So the fact is right now, we are in a really, very serious crossroads in the history of our country. At no time within our history of rights and people with disabilities have we been so directly and openly threatened. We have seen the President of the United States openly, directly, and publicly ridicule a person with a disability. We are defined as pre-existing conditions that are too costly and that we have no right to health care. We are defined as impaired in our laws. We are, we have seen very aggressive efforts to cut budgets for housing, Medicaid, SNAP, SSI. We’ve seen diversion of funds away from public schools that serve youth with disabilities. And we’ve seen numerous efforts to eliminate programs, services, and agencies that support people with disabilities. We have to remain vigilant. We have to remain active, consistent, and engaged to protect the ADA and our rights. So without us, the ADA alone cannot protect our rights. Furthermore, our rights will not achieve equality until we address the issues that are not addressed by the ADA. While protecting and expanding the ADA, we need to increase our efforts to address here our rights and a number of issues.

First, we have to address the full inclusion, the full representation and the full leadership of, and by people with disabilities in policy development and in organizations that serve people all too often, we are in the minority though, given the proverbial seat at the table more frequently paid non-disabled professionals are the table who make decisions to preserve what Justin Dart, who when appointed as the head of the rehabilitation services administration referred to it as quote, “a vast inflexible federal system, which like the society it represents, still contains a significant portion of individuals, who have not yet overcome obsolete, paternalistic attitudes about disability,” unquote. In California, we see this pervasive attitude continue both at rehabilitation and in state regional centers, the leadership is dominated by paid non-disabled professionals, who in my opinion are the primary beneficiaries of these organizations and serve the interests of the agency before the interests of people with disabilities.

Second issue is the systematic and institutional discrimination. People with disabilities are systematically excluded from key leadership roles as a function of certification, credentialing, licensing, and degree requirements. They are excluded from roles as leaders, designers, managers, and monitors of programs to serve people with disabilities. The one exception, our independent living centers. In my opinion, the primary beneficiaries, again, of these programs, are paid professionals, most of whom are not persons with disabilities. People with disabilities must be in leadership roles to transform the organizations who serve them. Otherwise. Justin’s opinion about the federal state systems will continue as they have so far.

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Healthcare is another issue. We absolutely need guaranteed access to high quality healthcare, including mental health as a fundamental human right. Having a disability virtually assures on employment, which in turn assures limited access to high quality healthcare. Home and community-based services. We need to expand access to home and community-based services and long-term services through legislation that supports the Supreme. Court’s Olmstead vs. LC decision. We need a law that includes requirements of financial support for the development and implementation of statewide Olmstead plans.

Unemployment and poverty. Disability is a significant predictor of unemployment and poverty. We need access to full-time jobs that pay a decent wage. The focus on the elimination of sub-minimum wage is not just an economic issue. It is much more. It is a civil rights issue. Sub-minimum wage is nothing more than a passive form of peonage. And the work of people with disabilities is undervalued and devalued. People with disabilities are viewed as less than when executive directors who advocate for sub-minimum wage argue it is a vehicle for achieving full access to employment, they fail to acknowledge that almost, this almost never occurs, while they acquire lucrative contracts that pay for six-figure incomes and salaries. So while the ADA was a tremendous achievement, some researchers note that it will take people with disabilities more than 150 years to achieve quality with non-disabled. Americans. Think about that 150 years, that’s almost 10 generations of children and adults with disabilities who are expected to endure inequality.

We absolutely have join hands with our African-American and Latino and Native American and immigrant brothers and sisters in our rights for, for civil rights. Their rights are our rights. Our rights are their rights.

And I beg and plead with you to vote. Your life. Your freedom. Your rights depend on it. We need leaders with character and integrity. No one is perfect, but at an absolute minimum, there should be a commitment to the truth, our civil rights and our democracy for everyone.

And I leave you with Justin Dart’s words, quote, “But the ADA is only the beginning. It is not a solution. Rather, it is a central foundation on which solutions will be constructed.”

In partnership with Diana Pastora Carson, M.Ed.
Author: Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools & Communities, and children’s book Ed Roberts: Champion of Disability Rights, ADA 30th Anniversary Edition

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