Tag Archives: Martin Luther King

Why I Fight

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Someone asked me recently what led me to become an advocate for equal rights. Good question.

There are some rather obvious answers. I was raised in a civil rights family. Our minister marched with Dr. Martin Luther King Jr. and both my mother and father were active in taking on things like racism, anti-Semitism, homophobia, sexism when they  crossed their paths.

Also, I’ve been lucky in a very real way. When I was a boy I was a ballet dancer. In that arena I met and knew and was friends with quite a few men who were gay. As a result I discovered there is no difference between straight men and gay men other than their sexual orientation. Then, a series of events landed me in reform school weeks after I turned 16. There were, as I recall, about 350 boys of which less than 10 were white. There I learned what it felt like to be a minority. I also learned that those who are black or Hispanic are no different than anyone else.

After I was released from reform school events propelled me into nearly three years of homelessness. During this experience I learned that if you are poor or homeless you are seen and treated as if you are less than human. But there too, there on the streets (we called it on the streets then, not homeless) I met men and women who were the same as all the other people I’d met in life.

For a time I was in a relationship with a remarkable woman who was Jewish. I was able to take part in Passover with her family and we became close  and through them, was given a deeply special close look at what her family, and other Jewish families have been through and endured for centuries.

And then, since the mid-nineties, I’ve worked with people with brain injuries like myself and other disabilities and seen and experienced the kind of brutal heartlessness and bigotry inflicted on this segment of our population.

The point is, we really are the same and we really are equal which means we all deserve equal rights.

But there is something else that must be included in the answer to the question of why I fight for equal rights: I love life. On more than one occasion mine has almost been ended: when I was shot in the head in 1984, when, in 1974, I was held at gunpoint for nearly three hours before escaping, and then again, in 1985, when, just months after being shot, I was held-up at gunpoint. Moreover, when I was homeless I  received medical treatment two times when suffering with hunger pains. And then, of course, I’ve lost three family members to suicide.

So, all this adds up to a deep love for and appreciation for life itself. And when I see forces that openly seek to deny people their right to a life of freedom and equality I’ve fought them and will continue to fight them. If I don’t, I am not only betraying my father and mother, I am betraying all those throughout my life who, because of their presence in my life, taught me we are all the same. And then there is this; if I don’t fight back, I betray life itself -  and I’ve fought to hard to keep mine to do that.

BIANYS is not an advocacy organization

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The Brain Injury Association of NY State is not an advocacy organization despite its claim to the contrary.

Without question they are a superb source of education when it comes to brain injury and the NYS Department of Health and providers statewide would be wise to learn from them, but they are not an advocacy organization and should stop saying they are.

The Oxford English Dictionary, considered the most comprehensive English language dictionary in the world, defines advocacy as “the giving of public support to an idea, a course of action or a belief.”  I can’t think of a single public stance or public statement BIANYS has made advocating for brain injury survivors in the state, certainly not when the advocating would require them to hold the NYS DOH accountable for it’s deplorable treatment of brain injury survivors, particularly brain injury survivors on the state’s TBI Waiver.  While BIANYS leadership will deny they are in bed with the DOH, their actions or lack thereof indicate otherwise.

Consider the following:

  • If you read through past BIANYS newsletters you’d be hard pressed to find so much as a blurb about anything they are actively advocating for. BIANYS leadership will tell you, they’ve told me, that they have their way of doing things and they do advocate. I may be the first to notice the phrase, stealth advocacy. If those you claim to care about and serve are never informed of your advocacy efforts, then something is deeply wrong.
  • BIANYS was dead silent when it came to light in 2008 that Timothy J. Feeney, then the most powerful force in the TBI waiver, was misrepresenting his credentials to all comers, claiming to have a valid PhD and valid masters degree when he had neither. At the time DOH would close a provider down or stop a provider’s admissions solely on Feeney’s say so. I remember Feeney telling one provider that if he learned they were including cognitive therapy in their program he’d close them down. A statement like that makes incompetence look like expertise.
  • When the Feeney situation was brought to BIANYS’s attention by this writer (I was a BIANYS board member at the time) BIANYS made it clear they would do nothing. In fact, one board member who I will not identify, wanted to know what difference did it make if someone was lying about their credentials if they did good work.
  • BIANYS refusal to address the Feeney issue and advocate for the rights of brain injury survivors, their families and providers across the state led me to resign from the board. It was as if I’d part of an organization that claimed to stand against anti-Semitism yet fell silent when it was informed someone in power was abusing the trust and, in this case, clinical safety, of Jews.
  • When it came to light last year that the DOH issued a directive blocking service coordinators from supporting waiver participants at Medicaid Fair Hearings, a directive that can only be seen as an attempt to deny waiver participants real justice, BIANYS uttered not so much as a syllable.
  • Then, of course, there is the matter of the  TBI Waiver complaint line which is answered by BIANYS. BIANYS has been complicit in a TBI Waiver grievance process that does not inform complainants of the results of their complaints. Once a complaint is “resolved” by the DOH,  BIANYS receives written notice from DOH letting them know that the complaint’s resolution:  resolved, unfounded etc. BIANYS staff are not even permitted by BIANYS leadership to inform complainants of these results.

A silent advocate is not an advocate. If BIANYS does not believe me, perhaps the words of these three folks might enlighten them (italics are mine).

Dr. Martin Luther King Jr. “Our lives begin to end the day we become silent about things that matter.”

Ruth Messinger (currently the President and CEO of American Jewish World Service). “If there’s one thing that Jews understand, it’s the danger of silence from the international community.”

Thomas Jefferson. “All tyranny needs to gain a foothold is for people of good conscience to remain silent.”

In the meantime, BIANYS should no longer say they are an advocacy organization – until they are.

Silence is not an option

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If you are going to truly be an advocate for equal rights there are a few things I’d like to share with you.

First, there will be times when you will be wildly unpopular. People in positions of power and those whose advocacy efforts are primarily a form of self-serving lip service will not like it when you bring their realities into the light. But, if your commitment to equal rights is sure and heartfelt, bringing their realities into the light is a must.

Second, there will be times when the facts, as you honestly understand them, will bring you to places and circumstances you wish they didn’t. Nevertheless, these are places you must go if your allegiance is to the equal rights of each and every individual. Sometimes the facts will lead you to places where you will discover people you may like are, in fact, part of the very process that is impeding or outright denying equal rights. Still you must proceed and bring the truth into the light.

Third, at times you will pay a price. Some advocates have lost their lives. Others have lost jobs, financial stability, relationships, and much more.

Fourth, find ways to replenish your spirit, your body and your mind. For me it’s nature, conversations with those very close to me, thinking about and reading the words of people like Dr. Martin Luther King Jr., Nelson Mandela, Father Mychal Judge, Gandhi, Shirley Chisholm, Soujourner Truth, Frederick Douglass, Lincoln, Teddy Roosevelt and others of similar ilk. And then, of course, the people whose rights you are fighting, in my case primarily individuals with brain injuries. My life is all better and then some for knowing as many as I do. As remarkable and resilient and courageous a group of human beings as one can imagine. And then, lastly, for me, reading books!

No matter what you do to keep your spirits up, there will be times you’ll want to give up. There will be times the fear and heartbreak will be so bad you’ll want to curl up into a ball and vanish into the earth. Please don’t give up. For if you give up, you hand those who deny equality a victory because giving up means you’ve surrendered your humanity.

While I will not get into specifics at the moment, I am beginning to realize I may need to  bring certain things into the open that may bruise people I like and, perhaps, in some instances, end friendships or acquaintances. Then again, perhaps some of these individuals will look into their hearts and discover that they too will put equal rights ahead of their honest, but perhaps misguided allegiance, to governmental or private agencies as well as for-profit and non-profit companies.

We’ll see. Being an advocate can be an unsettling, upsetting, heartbreaking, and scary experience. But, the experience of remaining silent in the face of people be denied their rights would be immeasurably worse.

Now, if you’ll permit me, I’m going to go read. I wish you the best.

I Miss My Father

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He was born February 20, 1914 and died August 16, 1969 when he was 55 and I was 15. He was my closest friend and remains the greatest gift life has ever given me.

While I know there will be more missives like this one about him, I also know that any words of mine will fail in their attempt to tell you what a truly special human being he was. There are things I can tell you that may, I hope, give you a glimpse. For example, there was not an iota of bigotry in him. He comfortably accepted people for who they were. It didn’t matter to him, and I mean, it didn’t matter to him if someone was gay or straight, if someone was black, Latino, Asian, Jewish, Muslim and so forth.

My father experienced people as individuals, and was not adverse to stinging back when confronted by bigotry. When we moved from Pearl River, New York to Nyack, New York somewhere around 1967, the house in Pearl River had not yet sold. While Nyack was a truly integrated community Pearl River was, for all intents and purposes, snowflake white. We were known as a civil rights family. Our minister marched with Dr. King and all of us were very open about our commitment to civil rights – for all people.

One day my father returned to check on the Pearl River house to discover someone had written the words Nigger Lovers on the front window. My father either lost sight of the fact selling the house might be a tad easier if he removed the words or he simply didn’t care because, rather than remove the words, he added some of his own. When he drove away, the words Nigger Lovers were still on the front window, however, they were now followed by the words, And Proud of It.

Staying with this theme, my father let me fight my own fights but would, at times, be nearby in case things got out of hand. Soon after we moved to Nyack I became enamored with a beautiful girl who happened to be black. Anyway, some kids found out. One day me and about three or four boys my own age were hanging out in our garage when one of them told me they weren’t going to let me out of the garage unless I said the word nigger. Now, while I supported Dr. King’s non-violent movement I must admit I wasn’t very good at it. I punched the kid right in the face and next thing I knew I was in a fight with all of them. Suddenly one of the boys saw my father approaching the garage. Everybody froze. I went out to see father. I was disheveled and may have had a bloody nose.

“You okay?” he asked.

“Yeah,” I said. I told him what they wanted me to say in order to get out of the garage.

“You want some help?”

“No, I’m okay.”

“Okay. I’ll be nearby if you need me.”

And so I went back into the garage and ended things when, after more punches were thrown, I picked up a long-handled shovel and begin swinging for the fences which caused my opponents to flee.

When I went back into the house my father ran a bath for his bruised-up son. I sat in the bath and my father sat in the bathroom with me and we talked.  In a tone that told me he knew the answer he asked, “Did you say it?”

“Nope.”

“Good for you. I’m proud of you.” He stood up, leaned over,  kissed me on top of my head, and said, “I’ll get you some aspirin.”

I miss my father.

Reflections of an Advocate, September 17, 2010

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Bigotry is inhumane.

For as long as far back as memory allows me I have always found it troubling when people were being treated inhumanely. This may explain why two of my childhood heroes were Dr. Martin Luther King Jr. and Geronimo. They still are heroes of mine. The hero list for me has grown since then. It now includes Elie Wiesel, Nelson Mandela, Gandhi, Frederick Douglass, Coretta Scott King, Dorothy Height, Father Mychal Judge and others.

Anyway, today’s reflections revolve around those moments all advocates face when you simply can’t believe the challenge you are facing is even there in the first place. For example, it boggles my mind that there is even a question about making sure polling sites are accessible to all. There is even a cluster of numbnuts who call themselves, I swear to God, the Lever Lovers. They seem to think  voting machines with levers are the only way to go, too damned bad if you are paralyzed. Boggles the mind, at least it does mine.

And then there were two moments this morning that boggled my mind in similar fashion.

First, I left a voice mail for Timothy J. Feeney asking why his company’s voice mail (call them yourself) has, for some time now, said they are under contract with the Department of Health whey they’re not and did he intend to continue to misrepresent his credentials to adults and children with disabilities.

Second, an email was sent to Maria Dibble, executive director of STIC (Southern Tier Independence Center) in Binghamton, NY, again asking her to explain why STIC, which is likely to be under contract with the New York State Department of Health for the Neurobehavioral Resource Project, plans to give the work to someone like Feeney.

There was a moment when I sat back, took a sip of my coffee, and shook my head. It struck me as somewhat unbelievable that any of us have to deal with someone prancing around pretending to have degrees they don’t have much less ask questions of a provider like STIC, that apart from this situation has a good reputation, why they plan to give work to the prancing ninny.

But, when I find myself shaking my head over perplexing challenges like these, I remind myself of the days people were made to ride in the back of the bus or drink and eat in specific locations because of the color of their skin. That was pretty unbelievable too.

So, the bad news? Bigotry marches on. Only bigotry would allow someone to think it is okay to be or to hire someone who is misleading an entire population of people.  The good news? Advocacy, including this advocate, marches on as well. I like my role models: King, Geronimo, Height, Mandela, Gandhi, Douglass, Wiesel.  Who might the role models for the bigots be? Maybe the likes of Bull Connor, Lester Maddox, David Duke, George Lincoln Rockwell, Adolf Hitler.

I like my role models better.