NYS Department of Health: Keep’m in the dark

Murphy scoops a spoonful of sugar into his coffee and nudges the sugar bowl in Wrench’s direction. “So how do you think the conversation goes?” he asks.

“What conversation?” Wrench puts the lid on the sugar bowl and smiles. Since his accident Murphy’s memory gives him a hard time and he still doesn’t remember Wrench doesn’t take sugar, with anything for that matter.

“The DOH table, they’re in a meeting and whattaya think they say? You’d think they’d want to at least make an effort in acting like they give a damn about us.”

Wrench laughs. “Hard to imagine how they think they’re successful there. I mean, so they sit back and say, Okay, first thing we do is make sure these TBI people, like that’s all we are, have as little chance as possible in the fair hearings and the we keep using that form, what they call it?”

Sarah lifts her head from the pad she’s been doodling on. “PRI. It’s called a PRI. Patient Review Instrument. That’s how they assess us to see if we’d be in nursing homes without the waiver.”

“PRI,” Murphy says, eyes closed, trying to make it a memory. “The thing doesn’t address cognitive stuff at all.”

Sarah again. “That’s the idea. People been after’m for years to come up with another assessment form that really applies to brain injury and they don’t.”

Murphy, “You think they’re that stupid?”

“Like a snake stupid, they are. Long as they can use a bullshit tool the doesn’t apply to brain injury the more they can deny help to survivors and the more people they can throw off the waiver.” Wrench sips his black coffee.

“And then this latest thing they’re pulling.” Sarah leans back in her wheelchair and looks out the window. It’s begun to rain. “Now they’re dumping the mailing list they used to have to keep people informed of the meetings of that brain injury council.”

“Not to mention minutes and agendas,” Murphy adds.

“Keep the public in the dark, that’s the DOH motto,” Wrench says.

Sarah finishes drawing a straw hat a young boy that looks remarkably like Huckleberry Finn. “Maybe what we do is find out where they live –”

“Shit, they know where we live.”

“We get a bunch of us together, show up at their houses, bring cameras and recorders and some megaphones, and ask’m what’s up.”

“They’ll call the cops.”

Sarah smiles. “Good. Then the press will do something and won’t that be nice.”

“One thing,” Wrench says. “If we do this, we send out an email to everybody we know’n we make sure DOH ain’t on the email list.”

“Keep’m in the dark.”

Independent Living: The 2010 SILC Congress

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.