Tag Archives: NYSILC

Lip Service Advocates

Posted on by
Reply

Even at 57 a deep sadness staggers me when I find myself realizing that the claim some make to being advocates for people with brain injuries is only true when it  makes them look good, gets them attention, and or when they and only they are calling the shots. They are the lip-service advocates, advocates when being advocates is comfortable, risk free.

Real advocates in the world of disability, and I know quite a few, Bruce Darling who heads up the Rochester, New York-based Center for Disability Rights, comes to mind, will tell you advocacy can be scary, lonely, unsettling, heartbreaking, angering, and, at times, joyous. It is, they will tell you, anything but easy. You have to be willing to go into the dysfunction storm, not flee it the moment it appears.

It is, sadly, not unique that there are those who, needing to feel a sense of control in their life, gravitate to the world of disability because large swaths of society’s so-called support systems make those of us who live with a disability controllable. Want those services? Want that wheelchair? Want that assistive technology? Want to come to our conference? Want that subsidy? Be prepared to pay the piper which, in part, will require your willingness to sing our praises, even though we don’t deserve them.

Not a price I’m willing to pay.

 

Choosing Change

Posted on by
Reply

There is nothing unique in saying change can be scary. It often is. Even when you choose it as I did recently when I resigned from the New York State Council on Independent Living, as remarkable a group of people as I’ve ever worked with.

The heartfelt commitment I witnessed in council members to the rights of people with disabilities to live independently, which means as equal citizens, is breathtaking. I hesitate to mention certain members because all deserve to be mentioned, but I’m going to do so anyway. The two who dazzled me most were and are Bruce Darling and Brad Williams, the former being the head of the remarkable Center for Disability Rights  and the latter being the executive director of NYSILC.

I resigned from the council for three reasons: it is time to focus on my writing, my stamina level is not what it once was, and, at age 57, I don’t know how many years I have left. There are books I am writing and want to write along with short stories, blog essays, and, well, anything else that strikes my fancy. I need to finish a memoir, I task I’ve let lag far too along with two novels and a non-fiction work about working in the field of disability, brain injury specifically, a book I’m calling It’s All About Respect.

Do I find the change I’ve chosen scary? You betcha. But there is an expression about fear I wrote some years back that I love: It’s okay to be afraid, don’t let it scare you. If we wait until the fear leaves before we make the changes we want, they’ll never get made.

Henry David Thoreau’s line was a great help to me in summoning the moxie to make this change. “Go confidently in the directions of your dreams! Live the life you’ve imagined.” This goes for you too.

You Call Us Disabled…

Posted on by
Reply

How can you say your helping human beings if you don’t think of them as human beings?

My name is Luther Willis and before I get goin’ here I just want to thank Mr. Peter Kahrmann for lettin’ me write this here piece in his blog.

We talked some and I said what I had to say and he smiled and said, “Have it it then,” and I’m damn glad he did ‘cause you might know he has this here bullet in his head and him goin’ off has different meanings, one’ve’m bein’ mighty messy.

Anyway, he said I could have it,  so I’m gonna do just that.

I live with what most folks call a disability but the specifics of it are of no never mind here. The thing is, lots of people call us disabled when most of those doin’ the callin’ are  bad disabled. I mean to say I can’t think of a disability much worse than a mind that can’t see a person’s humanity ‘cause maybe they have a brain injury, or can’t see or can’t walk, things like that. What’s worse is I see and seen people in powerful places makin’ all kindsa decisions about people they don’t see as human.

Might as well be slave owners

How can you say your helping human beings if you don’t think of them as human beings? Seems impossible. And people inflictin’ rules and regulations on the lives of people they don’t know are people. Might as well be slave owners, ‘cause there ain’t much of a difference.

Now I don’t ‘spect New York’s a helluva lot different than other places, though it would be mighty nice if it was. Here in New York you got a health department that has an advisory board it ‘spose to listen to about people livin’ with brain injuries and it does everything with that there advisory board but listen to’em. Then you got a state agency ‘spose to work with this here Independent Living Council and some times you got to wonder if what spills outta that agency ain’t just plain back stabbing schoolyard shit.

Anyway, maybe if people realized all people are people, things might just get better, for all of us. Now what’s so bad about that??

Thanks for readin’ my words.

Yours Truly,

Luther Willis

_____________________

Independent Living: The 2010 SILC Congress

Posted on by
2

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

Posted on by
Reply

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.