Memo to BIANYS board and TBISCC members

The leadership of my state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and the Department of Health are all fully aware of the damage being inflicted on the lives of brain injury survivors throughout the state by the aforementioned DOH and, because of their silence (complicity), the brain injury association and the council.

The BIANYS board of directors and the members of the TBISCC need to dump their “heads of state” and get the bows of both ships pointed in the right direction – a direction that really does advocate for brain-injured New Yorkers and, in the case of BIANYS and others,  not simply use those of us with brain injuries to fill their coffers and inflate their egos.

This September 12 the TBISCC will meet and have some presentation from Mt. Sinai Medical Center (which is all well and good but history shows that all the presentations given to the council over the years have not translated into a single proposal by the council to the DOH; feel free to email me and I will send you all the council minutes if you find this hard to believe) and then they will discuss a concussion bill which is important but they will not say a thing about the brain-injured New Yorkers having their TBI Waiver services cut or being discharged off the waiver altogether, nor will they say a word about waiver participants who are having their housing subsidies cut or ended putting some at risk of homelessness and death. A federal judge protected one life when he stopped the DOH from throwing a brain-injured senior out of her home and asking her for $24,000 in the process.

BIANYS and the TBISCC have been dead silent on all this, yet on September 12th there council chair Michael Kaplen will sit in all his pompousness and there Judith Avner the BIANYS executive director will sit in all her feigned righteousness and both will claim straight-faced to care about those of us who live with brain injuries. If either cared they would not be silent about the matters mentioned in this particular missive, but they are. The DOH’s Maribeth Gnozzio may or may not be there, but if the DOH actually cared about brain-injured New Yorkers Gnozzio would not even be in the picture. All three of these folks seem to be tiny-minded narcissistic control freaks and in the long run, are no more important than bird droppings on a windshield (my apology to the bird population).

The challenge contained in this blog piece is to BIANYS board members and council members. Do your leaders truly represent where you yourself stand when it comes to brain injury survivors? Are you really comfortable with the fact neither group holds the DOH accountable nor does either group live up to its mandate? Are you truly comfortable with the silence both groups exhibit in the face of the DOH’s brutality to those you claim to care about?

For example, I would urge BIANYS board members to carefully review the ebits the organization sends via email to its members. Look at the advocacy section in each and you will not find one example of BIANYS advocating for anything other than giving its support to the concussion bill.  I would urge council members to ask for and review council minutes over the years and see if you can find a single example of a proposal by the council to the DOH. Email me at and I will send them to you. I will also keep your identity private unless directed otherwise. I’ve already talked with some in both groups.

I would urge members of both groups not to fear Avner’s anger nor Kaplen’s for that matter. Kaplen’s bellicose behavior would be rather funny were it not so disrespectful to colleagues and those he claims to care about. Hell, there was a time Kaplen represented me in a lawsuit against the state’s Crime Victims Board which, at the time, was trying to stop reimbursement for any and all phone therapy sessions for crime victims. Kaplen will claim he was the only attorney willing to help which was not true, he offered to help and in the process and tried to get the state to pay him $500 an hour for his efforts (he was helped free of charge in those efforts by others, by the way), money that had the judge not rejected his request, would likely have been taxpayer dollars. I asked Kaplen to speak with me first when the ruling came in so we could discuss how to release it to the media.

Can you guess how I found out the judge ruled in our favor? From a reporter, a reporter Kaplen had called and bragged to. It was then I called and left Kaplen a voicemail message explaining that he should feel a sense of joy that he had not taken this liberty, say, 25 years earlier, because in those days I would’ve simply taken him outside and kicked his ass.

While there will always be Kaplens and Avners and Gnozzios among us, there will always be Kings, Mandelas, Gandhis, Wiesels, Wiesenthals, Darrows, Greers, Steinems, Father Mychal Judges, and more. The question, therefore, is this: are there any of the mindset reflected in this latter group that are on the BIANYS board and the council? If there are, then the days of Kaplen and Avner should be short in number.

Silence is not an option

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.

Reflections of an Advocate, September 17, 2010

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.


Any time I want to right size-myself by reminding myself of what I hope to bring to the world around me, I watch “The Saint of 9/11”, an extraordinary documentary about an extraordinary man, Father Mychal Judge. Father Mychal was the New York City Fire Department’s beloved chaplain and the first officially recorded death on 9/11. He was killed by falling debris while administering last rights to a firefighter who’d been mortally wounded by a falling body.

His body was carried by firefighters and placed before the altar of St. Peter’s Church on Barclay Street.

Father Mychal Judge was gay and a recovering alcoholic. He was buried on his 23 year sober anniversary. But anyone who defines him by his gayness or by the fact that he was in recovery is missing something very important: Father Mychal Judge. No one’s true definition is driven by anything other than the sum total of who they are, which is comprised of far more than someones sexuality or the disease of alcoholism, addiction.

The power of a human being’s life is found in their humanity. If, like me, you love Bruce Springsteen, are you wondering what church he belongs to when he is singing? If, like me, you love to read, are you wondering what the authors sexuality is or was or whether they drank too much when you read their work? Has anyone slammed down Sherlock Holmes because it’s author used drugs? Has anyone turned sniffily away from the work of Edgar Allan Poe because he was an alcoholic?

The power of Father Mychal’s impact on those who knew him and those, like me, who only met him through a documentary, was his capacity to lovingly accept the people he came in contact with for who they were and his capacity to accept life as it was. In the documentary a friend of his relates how he and Father Mychal would stand in front of the main branch of the New York City Public Library. Flanking either side of the steps are sculptures of two large lions named Patience and Fortitude. Father Mychal would tell his friend how could use more of both attributes. I suspect those who knew him best would say he had more than most.
I do not in any way experience “The Saint of 9/11” as a work about a gay man or gay priest or an alcoholic man or an alcoholic priest who happened to show courage on 9/11. Instead, I experience it as being about a man who dealt with the disease of alcoholism and who happened to be gay. Each truth is but a component of the man, neither is the definition. The defining truth about Father Mychal Judge was his loyalty to God , his deep love for his fellow human beings, and his breathtaking loyalty to his firefighters. When, on 9/11, Mayor Giuliani told Father Mychal he could join the mayor’s party and go to safety, Father Mychal said, no, “I have to stay with my men.”

A friend of his said Father Mychal would often say, “Have a cup of tea and sing a song, and maybe we can find some peace and understanding.” Not a bad idea for us all.

Malachy McCourt said serving others meant the most to Father Mychal. “That was his whole thing, to serve as best he could.” And so he did, and so should we all.


Getting to a blank page can be like walking through a wall of granite. If I remind myself that all I want to do is write, allow whatever wants out to come out, the page, at times, can be a cozy and comfortable place.

There are several things on my mind as 2007 draws to a close.

— The similarity I experience between the writings of Richard Wright and Gabriel Garcia Marquez. Both write with a simple direct clarity. The simplicity is deceiving though. A couple of strides into one of their pieces and you are too busy experiencing the story to think about the writing. This, of course, is why they are both great writers.

— I have been thinking about Father Mychal Judge. A Franciscan Monk and chaplain to the New York City Fire Department, Father Mychal was the first death officially recorded on 9/11. He was killed when a piece of falling debris from one of the 110-story towers struck him on the head. He had removed his helmet to offer last rites to a firefighter who had been mortally wounded by a falling body. Father Mychal was gay and he was a recovering alcoholic. He had celebrated 23 years of sobriety the day before he died.

There is a beautifully written essay on Father Mychal to be found in the White Crane Journal, a publication designed to explore gay men’s spirituality. I’ll place the link below.

I’d heard of Father Mychal in the rooms of a 12-step program I belong too. A couple of years ago I watched a documentary on him called, “The Saint of 9/11.” He was an extraordinary man. And when I say man, I mean, man. Far too many still think that if a man is gay his manhood is somehow abbreviated. Not so. Not even close. As a boy I was a ballet dancer and for awhile danced with the Joffrey Ballet. I knew many men who were gay. I made an interesting discovery. They are no different than anyone else. We are all equal despite ourselves, whether we like it or not.

Father Mychal’s prayer has been on my mind as well: His prayer goes like this.

“Lord, take me where you want me to go. Let me meet the people you want me to meet. Tell me what you want me to say. And keep me out of your way.”

— I have been mulling over a constellation of things that revolve around Chief Joseph’s famous quote, “I will fight no more forever”, and a year in which I’ve absorbed my fair share of betrayals, cruelty and nastiness.

A woman I was involved with for awhile playfully called me a “tough guy” once. At first, I disagreed. I associated being a “tough guy” with being a bully, and I’ve never been a bully. But what she meant was, if you’ll forgive the rather crass expression, I don’t take shit from people. And I don’t.

I struggle with absorbing a simple but, for me, difficult-to-digest truth. Not responding when someone takes a run at you does not mean you are letting them get away with it, although it sure as hell can feel that way. This is something I need to work on – and will.

I need to move into my day ,so will close this piece (for now). Before I do, there is something else I have been thinking about as this year comes to a close. I want to bring more love and kindness into the world, into my work, into my writing, into my life. This requires a steadfast commitment to humility on my part, which is not always easy, but that’s the way it is.