When it comes to equal rights, it is personal

I can think of no better time than now, Martin Luther King Jr. Day, to say a few words to all, including those who, if they abide by the requirements of their respective roles, are bound to the notion that people with disabilities deserve equal rights meaning, they deserve their freedom. There can be no freedom without equal rights. My disability is a brain injury as a result of being held-up and shot in the head in 1984.

In my state  of New York the struggle for equal rights for people with disabilities (and seniors) often finds itself confronting those who are seeking to save money at the expense of those rights which includes the right to live as independently as possible. In some cases this means having access to the services they deserve to make this possible. The struggle is, at times, with some of those who loudly pronounce their support for those of us with disabilities, but, when the forces that seek to deny us our rights raise their heads, they fall silent.

Over the years I have made friends and lost friends because I hold people, companies, agencies, councils, committees, and governments accountable for their actions. There are some who think that I start out holding these folks accountable publicly. Not true. In many instances, and, in some cases, for significant periods of time, I have held the aforementioned accountable in conversations behind the scenes. But when that fails, the dysfunction and the glaring disloyalty to their professed cause must be brought into the light of day. There is no doubt I have angered some and there is no doubt some have taken my actions personally.

I don’t advocate for equal rights to make people angry and I don’t advocate for equal rights to wound someone personally. Has it ever occurred to anyone that having your equal rights denied might make you angry? Has it ever occurred to anyone that having your equal rights denied is personal? When you lose your equal rights, you lose your freedom. For some of us with disabilities, losing our freedom includes losing our freedom to remain in the community! Our freedom to choose where we live, what we eat, what we wear, when we sleep, when we get up, where we go during the day, what we hear, what we see…   This is no exaggeration. I wish it was, but it isn’t. Just imagine losing your freedom in any or all of the ways just mentioned and then ask yourself if it wouldn’t make you angry. Ask yourself if maybe just maybe you might take the loss of your freedom personally.

There are some groups in New York who truly do practice what they preach. The Center for Disability Rights  headed up by Bruce Darling, a man I genuinely love and respect, comes to mind. On the CDR homepage, Mr. Darling writes, “Some people say we are never satisfied. Others try to portray us as complainers. I feel we just call it as we see it.” Thank God they do.  And what is it they do? They hold everyone accountable and, at times,  they do so publically. After all, sunshine is the best disinfectant.

And then too there is the extraordinary group, ADAPT, whose battle cry is, accurately and not surprisingly, Free Our People!  And, in my state, we have NYSILC, the New York State Independent Living Council, along with some  Independent Living Centers across the state who are indeed remarkable. But we need more groups like this. The fledgling Kahrmann Advocacy Coalition has, in a very short time, taken the role as the largest grassroots advocacy group for people with brain injuries in the state. Why? Because it was a huge void that needed (and deserved) to be filled.

If all that’s been said here and other places about the need for public advocacy for equal rights has not swayed you, then perhaps the words of the man whose day this is might help. Perhaps his words might help those who remain silent when the rights of any people are being denied to change their ways and speak out.

Dr. Martin Luther King Jr. said:

  • “Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.”
  • "A right delayed is a right denied.”
  • “In the End, we will remember not the words of our enemies, but the silence of our friends.”
  • “Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”
  • “Our lives begin to end the day we become silent about things that matter.”
  • “The hottest place in Hell is reserved for those who remain neutral in times of great moral conflict.”

Let us also remember that the reason this day belongs to Dr. King, and therefore all of us, is because, like CDR, ADAPT, the NAACP and more, he called it the way he saw it, and he did so in a way we all heard, understood and believed.

We shall overcome.

     

Lip Service Advocates

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

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…

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

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.