How could it happen?

After reading a recent blog piece about a New York State brain injury council being in total disarray a friend of mine asked, “How could it happen?”

Good question.

How could a council, formed by an act of a state legislature, drift so glaringly far from its mandated purpose? The New York State Traumatic Brain Injury Council (TBISCC) is, “Under Article 27-CC of the New York State Public Health Law…mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” Yet, as readers of this blog already know, nothing has happened.

There are two people claiming to be chair and vice-chair who aren’t. If the council were to abide by its by-laws, one of the two hasn’t been a member of the council for more than nine years.

What is it that leads people to turn a blind eye, remain silent, including other council members, when others blatantly break the rules? That, and what leads those who break the rules to do so knowing their actions will damage the lives of people with disabilities, in this case New Yorkers with brain injuries? It is not a coincidence that several of the current vacancies on the council are meant for people with brain injuries, yet the agenda for the upcoming December 10 meeting doesn’t mention this.

Back to, how could this happen?

When my friend first asked the question the first thing that came to mind was Abraham Lincoln’s quote: “Nearly all men can stand adversity, but if you want to test a man’s character, give him power.” 

Sit in on a few meetings with Michael Kaplen ( he still insists he is the council’s chair) and you’ll quickly learn he is a bully. I’ve been in meetings with him as participant and observer and witnessed him yelling at people and threatening people. Judith Avner, whose term on the council has been over for more than nine years yet still claims to be the council’s vice-chair, is another kettle of fish entirely. She charms, cajoles, and, were there awards for lip-service skill, would win gold or silver every time.

Having said all this, Avner and Kaplen are not hard to understand. Both strike me as being rather weak and insecure people who, by inflicting their will on others are able to feel some sense of control in life and some sense of, well, power. But what’s the cost? New Yorkers with brain injuries and their loved ones suffer as a result. The fact Kaplen and Avner, both attorneys, know their behavior leaves New Yorkers with brain injuries in the lurch reveals a lack of character.

The real question is, what empowers the enablers? The New York State Department of Health knows full well the council is a mess. Thus far it has said and done nothing. In fact, it sends high-ranking staff to council meetings and answers some council questions.  Perhaps one reason for the lack of DOH oversight can gleaned by  considering a July 5, 2011 blog post: “Minutes from a September 9, 2003 meeting say the council drafted a letter to then DOH official Betty Rice expressing the council’s dissatisfaction “with not being allowed to review (TBI Waiver Manual’s) revisions.”  This underscores what has been an ongoing pattern with the DOH for years; they are not interested in outside input. An ineffective council is to its liking.

But why the silence from other council members? Why the silence from members of the NY State Legislature? What are people afraid of, if, in fact, it is fear that gets in their way?

Perhaps, if council members, and others, listened to and heeded the advice of two heroes of mine (and many others) things might take a turn for the better.

  • Elie Wiesel: “Take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented.”
  • Dr. Martin Luther King, Jr:  “Our lives begin to end the day we become  silent about things that matter.”

This writer did send an email along with information about the council to Dr. Nirav Shah, the New York State Commissioner for the Department of Health.

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.

The Roads Less Travelled

John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” He was right. We all get caught up in patterns and relationships in life that hold us back, that result in our taking part in life with one hand tied behind our back. We don’t do this consciously, so, when we notice these patterns, we are wise to treat ourselves (and each other) with kindness, not harsh judgment. After all, new beginnings, while often rewarding and wonderful, are inherently scary, at times terrifying.

Recently I got to contemplating a passage from the Robert Frost poem, “Road Less Travelled”, 

Two roads diverged in a wood
And I took the one less traveled by
And that has made all the difference

and Henry David Thoreau’s words,

Go confidently in the direction of your dreams. Live the life you’ve imagined.

Contemplating both passages brought me out of the darkness of indecision and led me into the sunshine of clarity. As a result, I have been able to make some changes that will free me to walk the roads less traveled. Both passages helped me to make these changes because when I read them, to myself or out loud, and then align them with those I admire most: Mandela, Elie Wiesel, Dr. King, Beethoven, Geronimo, Tolstoy, Teddy Roosevelt, Eleanor Roosevelt, Steinbeck, Rosa Parks, Dickens, my father and more, it is strikingly clear that all of them lived the lives they imagined. All of them took the roads less travelled.

New beginnings often are the roads less travelled and they are often the roads best taken.



Seems I’ve stirred the pot a bit (Peter stirring the pot? Who would have thought?) with the last blog entry, “THE COST OF ADVOCACY.”

While some agreed with my friend’s genuine concern that I learn to pull back at times in my advocacy rather than, say, lose a job, most supported my view (a view shared by the likes of Dr. Martin Luther King Jr., Elie Wiesel, Mahatma Gandhi, Susan B. Anthony, Malcolm X, Nelson Mandela and others) that if you are going to be a human rights advocate, you can’t be one only when it doesn’t call on you to sacrifice or take a hit in some way.

I will not identify anyone who has responded to the last missive because those that have are people I like very much, even though, in some cases, I unflinchingly disagree with them.

One of the several who agreed with my friend’s caution said when I lose a job or take a major hit because of my unwillingness to restrain my advocacy, I “force everyone else to pay for (my) advocacy when instead of keeping quiet, getting another job, pulling back or whatever, you end up having to ask countless people including strangers to help you out because of it. Sorry, but I think your friend is right, a calm life slicing cold cuts at the deli is a perfectly acceptable way to live and also contributes to the world.”

There is no doubt working at a deli contributes to the world in a very real way. However, I would take issue with some of this person’s assertions. I don’t force anyone to do anything. Anyone who has recently helped me has done so because they care and, in most instances, are my friends. This is what friends do, it seems to me. They help each other through hard times and they don’t resent it. Not too long ago someone who is like family to me fell into hard times and I was able to send them a bit of money on a monthly basis for a little while and I felt both grate and grateful that I was able to help. So, no, I don’t force anyone to do anything.

However, this one respondent may or may not have company when it comes to the view that pulling back might be a wise thing from time to time. Yet, a closer examination of their reasoning could lead one to conclude that they are more concerned about my friends being inconvenienced than my welfare. People can share the same opinion for different reasons.

Here is what pulling back on my advocacy would mean to me (which does not mean this is what it means to others, those who agree or disagree with me). Pulling back to me means staying silent when others are being mistreated in order to keep my job, or my apartment, or home, or, for that matter, my life.

Case in point. Years ago, I moved into an attic apartment in Brooklyn after my first divorce. A close friend of mine was black. He came to see me one day. We had breakfast, talked, watched a movie, went for a walk, he went home. Moments after he left there was knock on my door. It was the landlord. They wanted to see me in their downstairs apartment. I went down to see them and they explained that while they had no problem with “his kind” visiting me, the neighbors did and so my friend could not come see me anymore.

I moved out. Was I wrong, should I have told my friend, sit tight, I’m only going to be here a year or so; you can’t come by to visit because you’re black?

A friend and I physically intervened once in a brutally violent situation on Court Street in Brooklyn when a young black man was being savagely beaten with boards and pipes because he had walked through a white neighborhood. My friend and I jumped in, shielded this bleeding battered man from a gang of more than 20 raging young whites, and, with the help of another man, kept him safe for a good 10 minutes before the police arrived.

Should we have stayed out of it so our lives would not be at risk, never mind that had we chosen to stay out of it, this young black man would almost certainly have been killed?

And what would people think the healthy choice would be were I, or they, working in a situation where blacks were called niggers or Latinos were called spics or gays were called fags or Jews were called kikes? Should silence rule so employment remains?

Don’t get me wrong. There are times when honing one’s form of advocacy is a wise choice No doubt, I could improve. We all could. But stay silent or pull back so I can keep a job or avoid inconveniencing friends? I don’t think so. Anyway, I don’t think anyone who is my friend feels inconvenienced, in large part because they know me well enough to know that if they fell on hard times, I’d help them, with joy and humility.

The best definition of humility I have ever heard was, “Humility is not thinking less of yourself, it is thinking less about yourself.”