Category Archives: Independent Living

Independent Living: The 2010 SILC Congress

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We have come to this room from every state and territory in the United States of America. When I hear a voice from every state and territory call out in response to a roll call vote, my eyes wet up. It takes my breath away. I am one of those representing the New York State Independent Living Council at the 2010 SILC Congress. This large ballroom is filled primarily with people like me. People with disabilities who are steadfast in their commitment to make sure all people with disabilities are afforded their equal rights, which, by the way, includes independence.

The key words? Independent Living. The phrase describing independent living on one website reads, “Independent Living is the right of all people to make informed choices, to have personal control over their own lives, and to participate to the fullest extent possible in the everyday activities of work, school, home, family and community.”

When I think of my experience and the experiences I’ve seen other people with disabilities endure, the right to independent living is denied on many fronts. In other words, the struggle for independence continues, and in my country and all country’s for that matter, the very fact people are not treated as equals is morally, emotionally, socially and politically inexcusable.

In my country, for example, some folks with disabilities work in what are called sheltered workshops where they are paid well below minimum wage. Never mind that their labor makes money for the companies hosting the workshops and the companies who contract to have their goods manufactured in the workshops. Is there some reason this is not slave labor?

The annual SILC Congress (the first was in 1998) is when every state and territory in the union sends representatives from its SILC. SILCs were established under Title VII of the 1973 Rehabilitation Act and “are state appointed councils which coordinate the functions related to the planning, monitoring and evaluation of the SPIL (State Plan for Independent Living)”. Among other things, SILCs play a role in the development and drafting of disability legislation as well as promoting research projects and gathering polling data.

The New York SILC’s website also explains that SILCs are “responsible for the development, implementation and monitoring of the 3-year Statewide Plan for Independent Living (SPIL)” and, in New York’s case, “The council is jointly responsible for the SPIL with its state plan partners: New York State Education Department/Office of Vocational and Educational Services for Individuals with Disabilities (VESID) and the Office of Children and Family Services/Commission for the Blind and Visually Handicapped CBVH).”

As I sit in this room and watch and listen to my colleagues from around the country, I am at a table with three truly remarkable people from my state: Brad Williams, executive director of NYSILC, Denise Figueroa, a member of NYSILC and the executive director of the Independent Living Center of the Hudson Valley in Troy and Bruce Darling, vice-chair of NYSILC and co-founder and President/Chief Executive Officer of the Center for Disability Rights (CDR) in Rochester.

I meet other remarkable people: Tony DiRienzi, a Philadelphia native who is now executive director of the Arizona SILC, Tom Masseau, government and media relations director for the Protection and Advocacy Service in Michigan, Bill Gorman, executive director of the Illinois SILC, Santina Muha from the Maryland SILC and the National Spinal Cord Injury Association and others.

All these people along with all the people in this room are powerful reminders that you don’t have to stand up to stand tall, you don’t need sight to have vision in life, and you don’t need hearing to know the sounds of injustice. You also don’t need to be disability free to be deserving of equality, independence, and your right to independent living.

A WONDERFUL HEUMANN BEING

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The only thing small about Judith E. Heumann is her physical stature. Listening to her speak at the Westchester Independent Living Center’s 1st Interdisciplinary Conference entitled “Uniting Systems – Empowering Lives” Friday was to experience a powerful, patient and thoughtful lesson on my country’s disability rights movement.

According to Independence Today, a publication of the Independent Living Center of the Hudson Valley, “Heumann served eight years in the Clinton administration as assistant secretary for the Department of Education, was a leader of the well-known 27-day sit-in in 1977 that led to the enforcement of access to federally funded buildings and transportation” and the list of her accomplishments goes on and on.

There is so much to this person, this woman’s message. In her speech she talked about a phenomenon all to common to those of us who live with a disability, work with people with disabilities or have a loved one with a disability; the way the world talks to you the day before your disability arrives and the way the world talks to you the day after is deeply disturbing. As a man who lives with a disability and who works with people who have sustained a disability through brain injuries, one of the most insidious realities I face daily is witnessing adults with disabilities being treated as if they are children, as if they are stupid or absent opinion or, worst of all, as if they are void of any value and rights. Some times I think those who inflict this treatment on others ought to be educated without judgment first. Then, if knowledge doesn’t do the trick and their demeaning behavior continues, which to my mind translates into knowing willful bigotry, they should be sentenced to spending a few days of their life in a wheelchair.

I cannot praise the Westchester Independent Living Center headed up by Joe Bravo and all who work there enough. What an extraordinary conference. And at the conference was Mel Tanzman, another extraordinary leader in the disability right’s movement, and Ralph W. Shields, and Nadine Bravo and on and on and on.

The fact that the names you’ve just “heard” are not household names is solid testimony to the distance we as a people need to travel when it comes to equal rights for people with disabilities. Actually, the real disability rests in the hearts and minds of those who dehumanize those labeled as disabled. For the latter, it is only a label, for the former, it is a definition.