Interviews

Barry Bernstein

Introduction: Mr. Barry Bernstein is one of the founders of VCIL, Vermont Center for Independent Living, which is the first disability rights program in the state run and staffed by people with disabilities. VCIL was founded in February of 1979. Mr. Bernstein’s employment with VCIL ended in 1995 and he now runs a business out of his home.

Q. What was your involvement with the Disabilities Rights Movement (DRM)?

Mr. Bernstein: My conscious involvement in the DRM really began in February 1978 when I was hired as Project Director for Project Outreach for the Severally Physically Disabled, a state wide needs assessment of Vermonters with significant disabilities, co sponsored by the Vt. Division of Vocational Rehabilitation and the National Spinal Cord Injury Foundation (now defunk). First it became necessary for me to recognize and except that I am a person with a disability, as strange as that may seem. As a result of being hit by a car at the age of nine resulting in loss of the use of my right arm I became a member of the Disability Community. However at that time, 1953, you were either shipped off to a residential school for the handicap or in my case mainstreamed back into school with my friends. "Mainstreaming" was not an accepted philosophy or even a concept at that time and it was only by the strong efforts of my folks and a determined Occupational Therapist, Ruth, that I was allowed to return to the public school system. My need to mention this is that at that point my unconscious involvement in the DRM really began. I began to view the world no longer as an "able bodied" athletic leader of the "gang" but as a dethroned sideliner in many activities i.e. sports, from the chooser to the last chosen. In many ways gaining this perspective prepared me for active involvement in the civil rights movement

of the late 50's and early 60's.

Back to 1978, as Project Director imaging a state wide needs assessment it was necessary to define the scope of the people to be interviewed, the questionnaire format for the interview, and to train the 16 field staff to conduct the interviews. What could have been a very narrow project, a report which had a limited focus to support a half way house for 4 - 8 quadriplegics, "teaching them to live independently" took on a much broader focus and life of its own. Within a few weeks of being hired I was fortunate

to meet Chris Palames, at that time the Executive Director of the Starvos Foundation located in Amherst Mass. Chris started Starvos, the first rural independent living program in the country. Chris, a quadreplegic as a result of a college wrestling match, was politically astute and had becomes friends with Ed Roberts and Judy Heummen, leaders of the Center For Independent Living, Berkley California, the first CIL and one with a philosophy of being non residential and run by, staffed by and working with people with disabilities. Chris not only mentored me in the politics of the movement but introduced me to Ed and Judy, Marca Brista, and others As a result the Project took on an exciting perspective. The scope changed from interviewing less than a hundred people to interviewing 1000 Vermonters with disabilities.

The interviewing format was a 2-3 HR interview in peoples, s homes and not only gathered information from them but gave them information about service and also developing an organizing base by sharing with each person we interviewed that there were many others in Vermont with disabilities and they were not alone. The project began to change the focus of peoples expectation and strengthen a fledgling DRM in Vermont into a more powerful movement. The project ended in a conference attended by over 100 people with disabilities attending, the largest held gathering of folks with disabilities. An outcome of the conference was the formation of VCIL, the first disability rights program in the state run and staffed by people with disabilities. The report from the project and the recharged DRM efforts also resulted in the beginning of the Participant Directed Attendant Care (PDAC) program now serving close to 300 folks.

My contacts expanded outside the state and a group of leaders around the country met for the first time at a leadership conference at Michigan State Univ., East Lansing, Michigan in 1982 that was solely for the purpose of leaders in the DRM, people with disabilities, discussing disability rights and its future. The gathering was incredible and the only person was Ed Roberts. The idea of the week long gathering was germinated by ED, Judy, Chris and myself while attending a conference that we were at but whose focus was only peripheral to our DRM issues. As a result of that gathering the National Centers for Independent Living(NCIL), the first national CIL advocacy group run by people with disabilities. It also established links between people who knew each others names but had never met.

Q. How do you feel about your impact/involvement with the VCIL and DRM?

Mr. Bernstein: I feel very positive as discussed in the above response. VCIL is still supporting folks with disabilities after 24 yrs of existence and staying true to its principles. The ADA passed in 1991 and when you travel you see people with disabilities everywhere a big change from prior to the early 70's. I am proud to have both given of my energy and time resulting in a synergy with others, which have resulted in very positive results both in Vermont and nationally. I am also grateful for the growth working in the movement gave me personally, allowing to accept my own path as a person with a disability.

Q. Are you still actively involved in assisting people with disabilities (i.e., their rights)?

Mr. Bernstein: Not as much as my work has taken me different directions. I am still involved with efforts to advocate for increased funding for the PDAC and was recently part of a task for to expand Medicaid funding for PDAC. I am on the board of Independent Living Resources (ILR), a non profit run by Chris Palames, which does ADA and other training and works on Universally Accessible design consulting. I also keep in contact with VCIL and its Executive Director, Deb Lisi, another national DRM leader.

Q. Have you met or worked with Edward V. Roberts who is known as the 1^st severely disabled student at Berkeley and for his role in founding the Physically Disabled Students Program (PDSP) at Berkeley? If yes, what was your involvement with him?

Mr. Bernstein: I was lucky to have known Ed Roberts and considered him a friend. Ed died

6 yrs ago. He was a mentor and a peer, working with Chris, Judy and I to set up the 82' leadership conference. I spent time with Ed both at his home and at several conferences over two decades.

Q. The DRM is ongoing and I was wondering if you were happy with the overall progress of the Disabilities Rights Movement? And if there are specific items you would like to see move forward to benefit people with disabilities?

Mr. Bernstein: Until people with disabilities are viewed as people and their disability

as a fact of life, the disability club one we all will join at some time in our life or experience through loved ones, until people with disabilities and families with people with disabilities can not be hung out to dry while they fret if the can pay for the expenses associated with disability, until we no longer have 2/3's of people with disability living in poverty, until we build new structures that are universally accessible without thinking about ... the DRM will have its work cutout for it.

I would like to see at least 50%of the defense budget spend on costs associated with disability issues so people of the world can live independently with dignity.

Deborah Lisi-Baker

Introduction: Ms. Deborah Lisi-Baker is the current Director of VCIL and is a member of the National Disability Rights Movement.

Q. What is/was your involvement with the Disabilities Rights Movement (DRM)?

Ms. Lisi-Baker: I got involved in the DRM just by growing up with a disability and being interested in how both disability services and personal opportunities and experiences were shaped by the social attitudes, resources, policies and laws that govern both disability specific programs and services and determine both access and lack of access to the rights and opportunities of citizenship for people with disabilities, particularly those people who can't afford to "fix" social barriers by paying for things out of their own pocket. I was very interested in civil rights, poverty organizing and the issues faced by women but also had a strong sense growing up of how my disability affected people's response to me and their expectations of what was possible. I got involved in disability rights when I was asked to represent people with disabilities and low income people on certain advisory groups. That led to work with both single and cross disability organizations as well as volunteer work on public boards. Because I love memoirs, I was really sold on disability rights by the stories of people I know and the writings by and about some of the key leaders. I took a public policy/systems advocacy job at VCIL late in 1983 and that was when this work took over my life!!

Q. How do you feel about your impact/involvement with VCIL and DRM?

Ms. Lisi-Baker: I love the people I meet through the work and the issues we are engaged with. The mission and purpose that drives us makes the work endlessly interesting...and somewhat overwhelming! I love the evolving growth of self advocacy and the new resources and approaches to cross disability rights issues: self advocacy for people with developmental disabilities and individuals with psychiatric disabilities, new understandings on different learning styles, new assistive technology and universal design options, Deaf culture, the implications of independent living for our choices as American's age. There is so much to learn from every day and I like getting policy makers, services organizations and others engaged in the shared promise of both independent living and disability rights...changing the lens through which people are viewing disability.

There is so much to do to keep both the DRM and VCIL vital and engaged in those issues that matter most to our peers. It can be hard to work with so few resources (CIL's are not well funded and need to be creative fundraisers to get dollars to do the work we are hear to do). We are always scrounging for ways to do all the work that needs to be done.

The work requires us to be open to reinventing how we work to address the current version of old problems, whether it is stigma, reasonable accommodations, or enforcement of civil rights. One of the most interesting things is broadening the public understanding and commitment to disability rights as an American issue that benefits American citizens. Sometimes people think of it as charity of a special interest issue, but disability is a part of the human experience and therefore disability rights laws define a social responsibility to include citizens with disabilities in the rights, protections and opportunities that we want all citizens to experience. The shape of the work changes as each decade passes but the work itself continues. New resources and approaches and new understandings of disability reframe the issues to be dealt with.

Q. How are you actively involved in assisting people with disabilities (ie. their rights)?

Ms. Lisi-Baker: VCIL provides information, peer support and public education on disability rights. We are the Vermont affiliate to the ADA Technical Assistance Center and I coordinate a broad coalition working on ADA and related rights issues. I have written successful grant to expand rights education for youth and adults with disabilities and VCIL now provides information and trainings on fair housing laws and work closely with both Legal Aid and Vermont Protection and Advocacy. We are also active in strengthening Vermont and national laws relating to disability rights and services. Our state specific legislative work is done as part of our membership in the Vermont Coaliton for Disability Rights. I have done national work on work incentive legislation and (in my early days at VCIL) assistive technology laws. We are also working on problems in policies and regulations in programs that fund assistive technology.

The important thing is to keep doing individual empowerment and social change through several essential strategies, individual advocacy, public awareness campaigns, policy work and legal initiatives...and street theater type community organizing. Also to build new coalitions and renew old ones.

Ms. Lisi-Baker: I did not know Ed but close friends did...and his story has been an important part of my work and helped lead to the creation of VCIL. Judy Heumann, one of the early advocates with Ed, is a friend of mine and Justin Dart is an amazing voice for the movement. But what is exciting is to see others become leaders in the work here and elsewhere. We are active in ADAPT, the street organizing arm of the independent living movement...

Ms. Lisi-Baker: I wish we did not have to continue to fight for some of the same things: personal care, access to assistive technology, universal design and cross disability initiatives that make inclusion possible for people with different disabilities. It is hard to know that some of the people that fought to start VCIL sometimes are stranded without personal care after fighting to make it possible for others. I think it is sometimes hard to keep people focused on the mission and not to splinter in to polarized groups: providers/consumers, single disability versus cross disability, etc.