Capitol People First

A chronicle of advocacy, as told by one of the first advocacy organizations directed by people with developmental disabilities. (November 14, 2011) (Run time 13:48)

Narrator: Since 1981, Capitol People First has inspired independence and promoted self-determination for countless Californians with disabilities. Throwing off labels like "mentally retarded" and "low functioning", this small group of individuals with developmental disabilities has led lives of dignity, insisting that people like themselves have a chance and a choice in life.

Jennifer Allen: "I never heard about Capitol, I didn't know anything about advocacy. A good friend of mine, actually one day, comes to Capitol [People] First and I was hooked. I never heard of an advocate, never, though I'd been to a couple People First weeks. They kept saying 'I want to be an advocate,' I finally said to somebody discreetly, 'What in the heck is an advocate?' and once they told me what it was, I had the information, I got the information, and I never looked back."

Tom Hopkins, Co-Founder: "Well my first Capitol was when I was like, I couldn't say anything, I was shy, I didn't know about self-advocacy, I didn't know about People First, what People First was, but it was a gradual process that didn't happen overnight. What we'd also learned from other groups who had been oppressed that getting together gave you a voice, gave you... we all knew the purpose, but we didn't know how to make the purpose work."

Connie Martinez, Co-Founder: "Nobody would listen, not even a parent, but to have someone listen, that was so refreshing."

"...and I couldn't decide to join People First or not, and I was already started independent living, and so I say 'Are we going to be concerned about paint the room? Are we're gonna change and be a voice? If we're gonna be a voice, I'm gonna be involved, if we're not, I don't want to be involved.'"

Narrator: It's the case of Infant Doe. Infant Doe's parents refused permission for life-saving medical treatment, allowing their child to die rather than face life as a mentally retarded adult.

Sandra Jensen: "I see something like that, or I hear something like that, I don't want that to happen to another child. They're too precious, too loving, to be able to just to die like that."

"Why [doesn't] anyone ask us what is best for us? Anybody goes there, and looks good, and says 'We know best for retarded, we know what's good for you,' and I said 'Hogwash. Ask us, ask us, ask for what do we want.'"

Sandra Jensen: "I get so frustrated at these people saying, they think they know everything about us, and they have got the wrong information about us."

Narrator: Growing from the independent living movement of the 1970s, self-advocacy groups organized by people with developmental disabilities began to be heard around the country. Capitol People First was founded as one of the first in California. Members recognized that their own experience as victims of mistreatment and discrimination gave them strength, strength to stand up for themselves and for others.

Because of this, Capitol People First was soon asked to talk to other people with developmental disabilities across the state, to have conversations about their lives and their futures, and reporting what they learned. That had never been done before, and as it turned out, the trip gave Capitol People First a mission for the next 25 years.

They called it "Surviving the System - Mental Retardation and the Retarding Environment".

"Retarding environment to me, and I've witnessed it, [was] closing off opportunities to those who were in the environment like a state institution or a day program or any other program."

Narrator: Capital People First's insistence on equal opportunities for living and working in the community, along with everyone else, led to advocacy and larger political arenas. They spoke up for consumer participation on advisory committees and community councils. Members joined statewide organizations and boards of directors like the State Council on Developmental Disabilities, and Protection and Advocacy, leading the way for policymaking by individuals with developmental disabilities.

"It is important to be policymakers, it's important to support communities, to share your voice, but also get information and share with others."

Narrator: They also shared their People First message out of state and in Canada. One Capitol People First member was invited to join the President's Committee on Employment of People with Disabilities. In 1990, they traveled to Washington DC for the signing of the Americans with Disabilities Act and had the privilege of meeting with President George H. W. Bush.

Recognized for their activism in California and outside the state, Capitol People First was honored to share its advocacy message in Japan to promote People First in the global community. This began a tradition of friendship, exchange, and learning between persons with disabilities in California and those from Japan.

"So we told them all about the other people's self advocacy groups, and Capitol People First, and maybe help each other start a self-advocacy movement in Japan."

Narrator: Moving on with their work at home, Capitol People First began a peer advocacy project to help people with their individual program plan. With Protection and Advocacy, they designed a poster on the rights of people with developmental disabilities, with easy-to-understand words and pictures, the first of its kind. They helped write textbooks, and [have] been included in disability histories, but always learning, teaching, and leading.

And then there was Sandra, another founding member of Capitol People First. She unfortunately suffered from a degenerative heart condition, until she became so ill she was forced to seek organ transplants.

"Well, she wanted a heart and lung transplant, but she was denied the heart and lung transplant because of her Down syndrome. Why doesn't she have the right to have a heart and lung transplant? So then we decided that she at least deserved the assessment to get a heart-lung transplant, at least put her on the list, because she wanted to make political and moral change in the community, too."

Narrator: Because of this work, Capitol People First joined a landmark lawsuit, Coffelt vs. the Department of Developmental Services. It was settled years after, with impact across the state that increased community based choices for Californians living in state institutions.

David Engberg, Current President: "Capitol People First signed on to the lawsuit, so people could have better chances to live in the community. Because if not, we would all be stuck in our houses or in the institutions."

Narrator: Ten years later, they joined another lawsuit in Capitol People First vs. the Department of Developmental Services, also aimed at assuring more choices for people with developmental disabilities to live in their communities.

"We felt as a group that it was necessary to give power behind the voices that were trying to be heard. What I mean is, we heard the voices but nobody else were. We were being heard in the community more than they were. We were the voice to everybody else."

California State Senate: "Mr. President, members, this month marks the 20th anniversary of Capitol People First, one of the very first advocacy organizations for and by persons with developmental disabilities to be established in this country. People First was organized with two goals: to assure the availability of services, training and support needed by persons with developmental disabilities to maintain and increase their capacity for independence; and secondly, to demonstrate to the rest of the community at large that persons with disabilities are people first and not to be defined by their disabilities."

"I'd like to introduce Connie Martinez, who's a founding member of People First, Tom Hopkins, a founding member, and Kay DeMaio, mother of founding member Sandra Jensen. Please join me in welcoming them..."

"Welcome to Sarah Chesto, a special guest, nice to have you here."


"There's a person who just arrived who many of us are very familiar with, Carolyn Negrete, mother of founding member Roberto Negrete, who we all fondly remember as Bear... please welcome Carolyn."


"Capitol People First is important to me because people, people need to be able to speak up for themselves and I wouldn't be able to teach people how to do it."

Narrator: For 30 years, Capitol People First members have contributed as peer leaders, teachers, and policymakers, participating in new advocacy projects for persons with disabilities, or as ordinary community members who demonstrate each day what can be accomplished in life outside the retarding environment.

"And so teaching people... each became teachers to each other, and to the other people with disabilities."

"Capitol People First has had struggles and accomplishments in 30 years of happiness."

"Change expectations of everyone, and it's amazing what we can do."