THE ADVOCACY BOARD

THE ADVOCACY BOARD

Steve Taylor
October, 1999

The question, "What's the role and responsibility of the Advocacy Board?," is often asked by Advocacy Board members, especially by those who are new to serving on the Board.

I will give my own perspective, as the Director of the Center on Human Policy.

The Center was founded by the late Burton Blatt in 1971. I have been involved with the Center since 1972 and have held just about every possible position with the Center since that time (graduate assistant, staff member, member of the Advocacy Board, and now Director). The Advocacy Board has always been a key part of the Center in my experience.

The Advocacy Board is not a Board of Directors of the Center. As a Syracuse University institute, we are accountable to university officials on our official activities. In addition, the Center's funding comes solely from external grants and contracts, and we have specific obligations and responsibilities under these.

Yet, since its establishment, the Center has always been involved in issues of importance to people with disabilities and their families in our own community. It is my hope that Center staff and students will volunteer their time to community advocacy efforts--not because this is part of official job descriptions or university or funder requirements, but because the Center was created to work towards fundamental changes in how people with disabilities are viewed and treated in our community and society.

This is where the Advocacy Board comes in. From my perspective, the Advocacy Board serves several critical functions. First, the Board forces me--and staff and students who choose to become involved--to make the time to work on local advocacy issues, even though these may not fall under our university or grant-related responsibilities. Research, training, teaching, information and referral, and the many other worthwhile activities Center staff and students perform as part of their official positions are all important. But these do not, and cannot, address all of the systemic barriers to the full participation of people with disabilities in society. Speaking personally, if I did not have the Advocacy Board, I would undoubtedly become mired in my day-to-day responsibilities as a university professor, administrator, and project director.

Second, the Advocacy Board helps keep the Center grounded in the everyday experiences of people with disabilities and their families. It is far too easy to succumb to the temptation to cultivate friendly relations with people who hold power over those who have disabilities and their family members--whether university colleagues, agency administrators, or elected officials. Cordial relations with those in power are not necessarily bad, but we need to hear the voices of those on the receiving end of schools and human services. I personally look to the Advocacy Board to help me understand what things are really like for individuals and family members.

The role of the Advocacy Board, together with Center staff and student volunteers, in bringing about major changes in our community will probably never be fully understood or appreciated. However, the Advocacy Board has been at the forefront of such important efforts as opposing the construction of the McCarthy School as a segregated setting for "trainable students," creating local education opportunities for students who are deaf, demands for accessible public transportation by CENTRO long before this was mandated by federal law, the expansion of supported work opportunities beyond a demonstration project, making school inclusion the norm and not the exception, the closure of Syracuse Developmental Center, and, most recently, home care for people with disabilities and elderly persons.

Finally, as the Center's Director, I am often called upon to defend our more controversial activities (complaints to the university about us happen regularly). It is important that our positions and actions have been developed in collaboration with an independent consumer/family member/citizen board and that we are responding to needs identified by members of the community.