Tag Archives: TBI

Remembering Frank Pierce

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Frank Pierce died on this day in 2008. The kindness and compassion Frank showed me and the many he loved and cared about was genuine and loving and sincere beyond description. Those who knew him knew a man whose caring and commitment to others, brain injury survivors and their loved ones were what I witnessed the most, was matched by few and outdone by none. He touched the hearts of those who knew him, including mine.
 – Peter

LOVE YOU BROTHER

Remember to say I love you to those you love. I don’t know what it is about those three often maligned and misused words, I love you, that makes them as special as they are, but I do believe that when they are meant, they should be said. Not only to the many who deserve to hear it, but by the many who deserve to say it.

My friend Frank died at 7:35 yesterday morning with the two he loved and who loved him the most by his side. Like many others, I loved Frank. And whenever I’d say, Love you Frank, he’d smile at me and say, Love you brother. And I knew he meant it. I can still hear his voice saying those words to me, Love you brother. He meant them too, all three of them.

The words I love you are remarkably hard for some of us to say. For still others, they are difficult to hear. Still others avoid the phrase because it is has been used as a tool for manipulation and, in some cases, cruel manipulation, in too many scenarios.

However, I think the only necessary guideline for saying it is honesty. Say it if you mean it. Your history, those who betrayed you, used the phrase to manipulate you in one way or another, denied your ever hearing the phrase, none of these people deserve so much control over you today that they stop you from saying it at all.

A woman I love very much said to me recently, “Peter, you love everybody.” Not true. Not by a long shot. Rest assured, there are people I don’t love and there I even people I dislike, some intensely. But what I do believe in is letting those you feel love for know it. While there is certainly such as thing as too much hate in the world, there is no such thing as too much love. However, there is such a thing as not enough love – and not enough expression of the love that is there.

The first game the Yankees played after Yankee captain Thurmon Munson’s tragic death in 1979 was in Yankee Stadium against the Baltimore Orioles. The Orioles catcher was Rick Dempsey, a former Yankee and back-up catcher for Munson. The Yankee manager was Billy Martin. Dempsey sent a note to Martin in the Yankee clubhouse before the game. In it he told Martin that he, like so many others, loved Thurman and he, like so many of us, did not always remember to tell people he loved that he loved them. And so, in this note, he told Martin that he loved him.

And so if you love people in your life, whether you love them as friends or more, tell them. Use the words I love you – all three of them. I would ask the few of you who might feel saying I love you is a wimpy thing to do why saying it is so hard for you to do? Were it an act of weakness, to say them, it ought to be easy, no?

Take care of yourselves in life. Love each other as best you can. And when you do, say so.

I am going to miss you terribly, Frank.

Love you brother.

NY State Brain Injury Council in complete disarray

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At first glance, the agenda for the December 10 meeting of the New York State Traumatic Brain Injury Services Coordinating Council  seems perfectly reasonable, unless, of course, you think the TBISCC should be abiding by its own by-laws and by the mandate it was given when it was  formed in 1994 by an act of the New York State Legislature.

A July 5, 2011 post in this blog accurately observes that “it doesn’t much matter (to the council) that “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is 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.”” After all, as this blog previously reported , “more than 10 years of TBISCC meeting minutes tell us the council” has “failed to come up with any real comprehensive proposals for the DOH”at all.

Ignoring its own by-laws

Apparently ignoring the  council’s own by-laws doesn’t seem to matter either. It certainly doesn’t matter to attorneys Michael Kaplen and Judith Avner whose two-year terms as council chair and vice-chair expired long ago. The term lengths are clearly outlined in the by-laws.

To underscore the glaring disregard for the by-laws and everything the council stands for, both Kaplen’s and Avner’s terms as council members had expired eight and nine years ago respectively: Avner’s on Aug. 9, 2003, Kaplen’s on Feb. 12, 2004 (Kaplen managed recently to get himself reappointed although his current term ends in February 2013). The expiration of their terms didn’t stop either one of them from taking part in council meetings or laying claim to being the council’s leaders. It also didn’t inspire council members to stand up and say something. The fact the state’s department of health has, to date, done nothing about this, may  reflect a desire on their part part to keep the council as ineffective as possible. It is somewhat troubling to note that a DOH deputy commissioner is scheduled to report to the council on December 10, a move that can be seen as DOH support for keeping the council dysfunctional and ineffective.

To make matters worse, a recent document released by the state’s department of health, says Ms. Avner’s term on the council remains expired. One wonders if the number of council meeting cancellations this year has not, to some degree, been to give the likes of Kaplen and Avner time to get themselves reappointed. If so, it would mean that the needs of New Yorkers with brain injuries were once again being set aside for personal gain. If it is announced at the December 10 meeting that Avner has been reappointed, the preceding speculation may well have its roots in fact.

Disrespecting  NY State Legislature – among others

The fact Kaplen and Avner have been allowed to remain at the helm by their fellow council members and by the state’s department of health reflects an astonishing lack of accountability, glaring disrespect for New Yorkers with brain injuries, and, not at all incidentally, disrespect for the very state legislature that should be commended for forming the council in the first place.

Yet, a read of the agenda for the upcoming meeting reflects business as usual. Kaplen and Avner at the helm, surrounded by council members who have, so far, remained silent. They need to stop being silent and speak up. There was a time when this writer, who has long believed Kaplen simply needs to get out and then keep on going, believed Avner needed to remain on board. This has changed. Avner, who is and should not be the executive director of the Brain Injury Association of NY State (BIANYS),  needs to get out as well. Let’s not forget that, as reported last year in this blog, she voted on a measure that had a direct bearing on the BIANYS despite being warned during the meeting that her vote was a violation of the state’s public officer’s law and thus the council’s by-laws.

Knowledge gone to waste

And then there is this observation. Over the years, quite a few groups have presented valuable information to the council, including, but not limited to, OVR (Office of Vocational Rehabilitation), NYS Education Department, Office of Mental Heal, NYS Crime Victims Board, Office of Alcohol and Substance Abuse Services, OMRDD (now OPWDD), Office of Advocates for People with Disabilities, Mt. Sinai School of Medicine, NYS Division of Veterans Affairs, Unity House, NYS Coalition on Domestic Violence, and so on.  But then, nothing happens with the information! It is not shared with New Yorkers with brain injuries, it is not shared with providers, nothing. So what is the point? To inflate the egos of those who sit at the head of the table like pseudo-royalty?

Time to stand up

To those council members who truly do care, let me say that you need to stand up to anyone and anything that gets in the way of what the council was designed to be and do in the first place. I know facing Kaplen’s bully tactics and Avner’s talent for saccharin lip-service is not easy. It can even be scary for some, and I get that. But consider this, consider what those you are there to help have faced. Here is a glimpse of just few.

  • A young man in Cortland who suffered his brain injury in a car accident and, in that accident, witnessed two of his friends being decapitated.
  • A young woman so savagely beaten and raped she was left for dead.
  • A woman who went into labor joyous at the thought she was going to have a child and suffered a stroke.
  • A veteran in his early 20s who sustained his brain injury from an explosive device in Iraq.
  • A woman who, while in her early twenties, suffered a car accident and remained in a coma for more than six months. When she came out of the coma she learned her brother, who had been sitting next to her in the car had died.
  • A woman who was a teacher and on one lovely winter’s evening went for a walk with her husband. They were pulling their two children behind them on a Flexible Flyer sled. Suddenly a snowmobile driven by a  man who was drunk hit all of them. The husband escaped injury. The woman suffered a brain injury and deals daily with the challenges of being a quadriplegic. Worst of all, she will tell you, is dealing with the wrenching fact that both her children died in the accident.

So, yes, I know it can be scary. But stand up. Stand up for these folks, for yourselves, for the right every person with a brain injury (or any disability) has to be treated as equals, and to be afforded every conceivable opportunity to regain their maximum level of independence, which includes – always includes –  their right to respect and dignity.

Share your concerns

Concerned citizens can voice their concerns to NY Governor Andrew Cuomo here and, just as important, to the Commission on Quality of Care and Advocacy for Persons with Disabilities  here.

Time to say goodbye to BIANYS’ Avner

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Until and unless the board of the Brain Injury Association of NY State takes action, BIANYS will remain an insular presence controlled by a dictatorial executive director who should resign or be fired.

It seems clear that executive director Judith Avner has no real interest in truly interacting with or listening to BIANYS members, including those of us who live with brain injuries. She  shuts down  any and all attempts to improve transparency, maintains a dictatorial grip on the BIANYS board, website, Facebook page,  and newsletter, and has the board president marching to her orders. However, Ms. Avner is all too happy to ask anyone and everyone to donate money, appear at fundraisers, and have her picture taken with any and all celebrities who support BIANYS, mistakenly thinking BIANYS does what Ms. Avner says it does. I suspect it is safe to assume Ms. Avner is diligent about accepting her roughly $2,000 a week paycheck.

Save for its remaining valiant support group facilitators (volunteers all) and a small group of underpaid staff, most of whom are equally valiant in their work with those who sustained brain injuries in their youth, not as adults,  BIANYS has become little more than window dressing thanks to Ms. Avner, a seemingly anemic board, and a cluster of sycophants.

It’s hard enough managing life with a brain injury. It’s even harder when those who claim to care about you and say they advocate for you do anything but care and advocate, unless, of course, you count lip service. 

Over the past few weeks several BIANYS members and former BIANYS board members have been involved in series of email exchanges with BIANYS seeking answers to several questions and offering to help, not hurt, BIANYS, if, in fact, the answers are not all one would hope they’d be. While Ms. Avner will say all the things one would hope to hear at fundraisers and  BIANYS conferences, she refuses to even respond to any of the emails, some of which asked BIANYS to create an online forum for open discussion, whether that be a message board or the discussion component of their FB page.

Instead, the task of responding was given to Marie Cavallo, the BIANYS board president, a volunteer. As one person who read the email exchanges observed: “It looks like Marie’s lost her mojo.” Ms. Cavallo said BIANYS rejected the notion of a message board because it would be too time consuming. She said BIANYS rejected opening the FB page to discussion because, she claimed, healthcare providers had used the page to tout their wares. When it was pointed out that FB allows one to block companies and individuals, the next excuse she offered for nixing the FB idea was it’s too time consuming. Then, in what gave us all a flutter of hope, she said she would talk with BIANYS staff about opening the FB page (One wonders why it’s the board president and not the executive director talking with staff when the executive director is their supervisor. Perhaps Ms. Avner doesn’t have time for staff either.). Since then Ms. Cavallo has chosen to walk in lockstep with Ms. Avner and has ignored our emails and, needless to say, their FB page is still closed to discussion.

You may be wondering what were the questions we asked. Here’s a taste: Can you tell us how BIANYS informs its membership what it is advocating for? How does BIANYS decide what it will advocate for and how does BIANYS include its members in the discussion? (At one point Ms. Cavallo pointed out that BIANYS issues an annual report and publishes newsletters on its website. All true. But you’ve got a better chance of finding a needle in the Sahara desert than you do of finding word-one about BIANYS’ advocacy in the annuals reports or newsletters). We also asked how many person with a brain injury does BIANYS currently employ and how many has BIANYS employed since Ms. Avner took the helm on or about 1987. No answer.

Lest you think any of us are out to do anything other than hold BIANYS accountable let me say that in our emails we offered to help and support BIANYS in identifying individuals with brain injuries for employment and issues of advocacy. No response.

Lastly (for now), there are times the choices we make in life reveal our true colors. Several years ago when I was on the BIANYS board a fellow board member died. This board member, like me lived with a brain injury and had been in poor health for some time. However, poor health or not,  this person’s heartfelt commitment to BIANYS and devotion to those of us who live with brain injuries and our loves ones was unflinching. Had anyone on that board suffered a calamity in his or her life this person, poor health or not, would be there for them come hell or high water. Yet, when this good and decent human being left this world, Ms. Avner and Ms. Cavallo were no shows at the memorial service.

And then there’s this. At the first board meeting following this person’s death, Ms. Cavallo announced that Ms. Avner (who was sitting next to her) had been in frequent contact with the board member’s family and the family was doing well. Not long after this, I had the chance to have coffee with two members of the family (the board member’s spouse and child). I said I was glad Ms. Avner had been staying in touch with them. Both looked stunned. Ms. Avner had never called them, not even once.

Like I said at the outset, until and unless the board of the Brain Injury Association of NY State takes action, BIANYS will remain an insular presence controlled by a dictatorial executive director who should resign or be fired.

How do you sleep at night?

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I need to put two things on this essay’s table in order to, I hope, make my point.

First. When I was a boy I complained to my father about a cliché, I don’t remember the cliché in question, what I do remember was my father’s thoughtful and accurate response. “Well, there’s a reason they become clichés.” He was and is right.

Second. I used to believe as I think many do that if you were able to factually establish that a behavior, a policy, a method, a strategy, would actually hurt innocent people, people would automatically care. Wrong. A sickening truth about some people is they simply don’t care. Even when you establish that, for, lack of a better phrase, their actions will hurt others, they still don’t care.

Okay, you may be wondering what it is that has me thinking about all this. Two things, really. An aspect of the presidential race and some who claim to care about those of us with brain injuries and it is becoming increasingly apparent they don’t.

When it comes to the  presidential race it is the blatant lying being done by the Romney-Ryan ticket that falls under the microscope of this missive. If they are elected and if they do what they say they will do and have done in the past the rights of women in my country will be, in a word, decimated. On top of that, millions will lose their health insurance and Romney’s assertion that we don’t let the uninsured die in our country because they can go to the emergency rooms is a lie, a flat out lie. He and those in his circle know damn well people will die if the affordable care act is  reversed. They don’t care.

And when Romney and Ryan say they support equal rights for women, they are, once again, lying. To lift a cliché into the light, actions speak louder than words. Ryan voted against the Lilly Ledbetter Fair Pay Act, which helps women fight for equal pay for equal work; he voted for a bill tagged as the “Let Women Die Bill”  that would allow hospitals to refuse abortion care even if the mother’s life was in immediate danger and he co-sponsored a bill that would deny rape victims on Medicaid access to abortion. Romney’s no better. After all, he picked Ryan as his running mate (safe to assume he agrees with him) and, while governor of Massachusetts, Romney vetoed a bill giving rape survivors access to emergency contraception (to it’s credit, the Massachusetts legislature overrode the veto).

So, if you think Romney and Ryan support women’s civil rights, you’re either delusional, gullible beyond comprehension, or, like Romney and Ryan, you’re lying and you know it, and, like Romney and Ryan, you don’t care either.

Now, brain injuries. For several weeks now members of the Brain Injury Association of NY State as well as former BIANYS board members have been in an email exchange with BIANYS seeking answers to some incredibly reasonable questions. Now, the two people at the top of the BIANYS food chain, as it were, are Marie Cavallo, the board president, and Judith Avner, the executive director. Let me quickly point out that is has been made clear that Ms. Avner will communicate with us in this email discussion (how does she earn her roughly $2,000 a week salary I wonder?).

The questions we are asking?  Well, judge for yourself.

1) How many people with brain injuries does BIANYS employ and how many have been employed since Ms. Avner  took the helm in the late 1980s. No answer.

2) How do you (BIANYS) decide what you are advocating for or against, how do you let membership know, and how do you solicit membership’s input? Ms. Cavallo referred us to their annual reports and newsletters but these questions are not answered in either, not even close. We pointed this out and they responded with…no answer.

3) Ms Cavallo said the reason she, not Ms. Avner, is talking with us, is because she represents BIANYS. And so we asked another reasonable question. If we, as BIANYS members are not part of BIANYS, then are we, the very people she and Ms. Avner claim to care about so much, merely an outside entity? Does BIANYS sees its members as something separate and apart from, well, BIANYS? If so, we asked Ms. Cavallo, who exactly is she representing?  No answer.

The point is you can’t tromp around the state asking everyone and anyone for money because you say you care about us and are on our side and then when we have questions ignore us and simply hope we’ll go away (we won’t) and expect us to believe you actually do care.

All this brings me to the cliché that is the title of this essay, a cliché that appropriately applies to the likes of Romney and Ryan and Avner and Cavallo. How do you sleep at night?

 

 

Working against Hypocrisy in NY State

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T.S. Elliot was right when he said: “There’s no greater heresy than to do the right thing for the wrong reasons.”

In the world of advocacy there is no greater heresy than hypocrisy, especially when it comes from those who say the right things for the wrong reasons, self-aggrandizement and the ability to feel powerful. There is also no greater heresy than those who, when asked for the specifics of their decisions and actions, engage in double talk, spin, or, in some cases, simply say nothing.

And so it is that I and others have been emailing with the Brain Injury Association of NY State in the hopes BIANYS will, for the first time in this writer’s memory, permit an open-dialogue forum online for its members. This is something quite a few members (including former BIANYS board members) have asked for. The request  was prompted by the fact that a long-term BIANYS member with a brain injury resigned as a BIANYS support group facilitator in part because BIANYS leadership, he explained, might hear that those of us with brain injuries are talking but they don’t really listen to what we are saying.

There is no argument that communication could use some improvement, not just between the members and BIANYS leadership, but among members statewide.

Thus far we have suggest an online message board. BIANYS, represented in the email exchanges by its board president, Marie Cavallo, said they don’t have time for a message board but would consider it in the future. It was then suggested that BIANYS open its Facebook pages so those who “like” the page can initiate comments and communicated with each other. At first the answer to this was no because, Ms. Cavallo explained, in the past providers has used an open FB format to advertise. It was pointed out the FB permits the user to block those that abuse the page. Ms. Cavallo  then said opening the FB was a possibility but there was concern doing so would be a drain on staff’s time.  BIA from New Jersey, Massachusetts, Connecticut and many others have open FB pages.

Transparency, an openness to communication and sensitivity to membership are critical components to any advocacy organization.

It is important to note that Judith Avner, the executive director of BIANYS, won’t take part in these discussions. At one point Ms. Cavallo explained this is because she, as president, represents BIANYS, but to whom? To its members? Are the members really seen as being separate from the organization? An unsettling notion at best. After all, Ms. Avner speaks at numerous conferences, fund raisers, speaks to the board, but, not, it seems, to the members. BIANYS financial statements reveal Ms. Avner is paid roughly $2,000 a week.

I don’t envy Ms. Cavallo her position. In all the years I’ve known her it is clear to me she has a good heart and genuinely cares. The question is, has she found herself in the position of, when it comes down to it, representing Ms. Avner.

We’ve asked other questions as well and are looking forward to the answers. Two of them are:

  • How many persons with a brain injury does BIANYS currently employ and how many persons with a brain injury has BIANYS employed since Ms. Avner took the helm on or about 1987?
  • What is BIANYS specifically advocating for or against, how are members and the public informed of these specifics, and how are the members included in determining advocacy issues?

Not answering the questions couple with an executive director who refuses to take part in the discussion carries the bitter taste of hypocrisy.

Let’s hope the answers come soon so we can all work together.