Monthly Archives: January 2010

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.

In This Room

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In this room the spirits of Gandhi, King, Mandela live and breathe.

In this room advocates from every corner of the country abound, all joined in the still-going war for independence in my country (and others) for people with disabilities.

In this room the annual national SILC (State Independent Living Council) Congress is meeting. I am part of a four member delegation representing the New York State Independent Living Council, an extraordinary group of people if there ever was one.

In this room you see what all here already know; you don’t have to stand up to stand tall; you don’t need sight to have vision in life; you don’t need hearing to know the sounds of injustice.

In this room we talk of battles fought, some won, some lost. Fellow advocates and I compare our experiences with New York Senator Chuck Schumer, all positive.

In this room I remember successfully suing the New York State Crime Victims Board a couple of years ago, reversed the CVB’s decision to deny phone counseling to crime victims. I remember the long battle so many of us across this country fought to make the Brady Bill reality. I remember uncovering the fact a high-level state contract employee was knowingly misrepresenting his credentials (at this writing he is not longer and state contract employee).

In this room I am with people who have done as much and  more. All of us are joined  in the struggle to make sure no one is denied their inalienable right to life, liberty and the pursuit of happiness.

In this room goodbyes will be said and we will return to our states and territories and the struggle for independence will continue. As a result of our time together, however, we are nourished, and, as a result, one step closer to independence.

Wilting in Vegas

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I’m walking through a Las Vegas casino with Christine and friends thinking Holy God, what the hell’s happened to the human race?  We’re surrounded by sagging wet paper bag faces so sad in countenance Sad Sack looks like a poster boy for joy.

We see a heavily made-up woman pushing 80 with bleached blond hair and fake eyelashes so long you’d be protected from the rain by walking in front of her. I think if she bats her eyes really fast everyone in her path will be blown yards away from the gust of wind, unless of course the physics of  the thing are different and  batting her eyes sends her flying backwards through the nearby plate glass window.

The phrase what happens in Vegas stays in Vegas comes to mind and I think God I hope so.

Wandering through the casinos and wilting like long ashes on cigarettes left burning in ashtrays are forlorn cocktail waitresses in short black skirts winding around their waists like small umbrellas, and black stocking and heels and low-cut tight-fitting blouses.

There’s signs saying free food and drink for some casino regulars and I think hey, if you drop my place with the sole intention of giving me all your money, hell, I’ll give you free food and drink too. Think nothing of it.

One of our friends is a delightful young woman who will celebrate her 21st birthday in a matter of hours. As we leave the casino area which, by the way is filled with cigarette and cigar smoke, always fun for us asthmatics, I look back at her and say, We just left a room filled with people who didn’t handle turning 21 very well.

Good Morning 2010

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There is something uplifting for me about the beginning of a new year. A fresh start maybe, my mind somehow believing it was quietly and discreetly refueled the last night of the prior year? Who knows. Beginnings can be nice. This one is.

There are all kinds of things to feel good about.

I am joyous at having finally begun to read Sinclair Lewis’s  books and since I am only on my third, Arrowsmith, I’ve already read Babbit and Main Street, there are many more to go. Kind of like have your cupboards filled with food after a good shopping.

I am in a breathtakingly wonderful relationship with Christine and have met and discovered that her two daughters, Anna and Emily, are, like their mother, angels.

My writing is beginning to go places I’ve never imagined. I am at a new comfort level with words and late last year even sent out a short story for publication and a writing contest. Go figure.

On top of all this, I continue to meet weekly with an extraordinary group of brain injury survivors, family members, friends, and healthcare professionals. Moreover, I am in the process of developing a statewide coalition for people living with brain injuries and to know they will be afforded a unified voice that will, when needed, level the playing field, is a wonderful piece of knowledge to have.

And while I am on disability with a sprinkling of income here and there, making me poor as an old worn sock, my life is wealthier than it has ever been.  Sobriety does that for you.

Anyway, life is good. I hope your day is going well and this morning of 2010 is the beginning of a wonderful year for you and your loved ones.