Tag Archives: advocacy

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.

An advocate’s thoughts on accountability

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We are all, unless determined otherwise by a court or healthcare professionals, accountable for our choices, our actions; let’s call it, our behavior. None of us gets a pass, at least when it comes to our personal and professional lives, nor should we.  When we are public servants, i.e. elected officials or employees (contract or otherwise) of state, federal and local governments, we are also accountable for our behavior. If we are members of non-profit agencies pledged to help some segment of the population, we are accountable for our behavior.

As I see it, my responsibility as a human rights advocate, is to hold people and agencies and governments and government officials accountable for their behavior, and to do so openly; bring the behavior out into the light of day. When the behavior is good and healthy, it deserves the accolades, the gratitude, the recognition. When the behavior is not good, not healthy, it deserves the response it will get, and it deserves to be publically recognized; people have a right to know. President Obama once said, “Sunshine is the best disinfectant.” True. Martin Luther King Jr once said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” True.

The price I’ve paid for my advocacy -I’ve paid and still pay some “bills” to be sure – pales in comparison to what those being denied their rights go through. I know too that there have been and are people, some of whom I like very much, who have been and still are very upset with me; angry with me. I take no pleasure in this, but I have no control over where the facts lead. And, for me, silence is not an option. If I worked for or knew of a company or agency that discriminated against people who were Gay or Lesbian or Transgendered, I would not be silent. If I worked for or knew of a company or agency that discriminated against people who were disabled, black, Latino, Jewish, Muslim, etc., I would not be silent.

There are also instances when people or agencies take my actions are personally. They believe, honestly I am sure, that my actions are aimed at them on a personal level. Not so. My actions are not aimed at anyone on a personal level. But let’s be unflinchingly clear about something; it doesn’t get more personal than when someone’s rights are being denied. And when I watch and experience this happening to others, I do take it personally. Perhaps this is a character flaw, that’s for others to judge, and I’m sure they will, and have. But it buckles me into tears sometimes when I hear of how inhumanely people are treated.

When I hear people have taken my efforts personally, I always think of a scenario along the lines of the following: A husband and wife are home one evening.

The husband says, “Some sonuvabitch cop gave me a speeding ticket!”

His wife says, “What was the speed limit?”

“Thirty.”

“How fast were you going?”

“Sixty.”

I very much doubt the cop wrote out the ticket as part of some personal vendetta.

And so what’s the moral of this story? Don’t speed. And if you do, and you get caught, don’t blame the one who caught you. If you weren’t speeding, if weren’t discriminating, if you weren’t trying to beat the rules, the laws, you wouldn’t be in the position you’re in now, would you?

My advice? Don’t speed. If you do, you’re likely to be held accountable. And that is as it should be.

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.

Truth and Advocacy

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In a Merriam Webster Dictionary I was reading recently truth is defined as “sincerity in action, character, and utterance” and as “(1) : the state of being the case : fact (2) : the body of real things, events, and facts”.

Advocates, civil rights activists, work for a truth that says all people are created equal, and therefore deserve equal rights, equal treatment under the law. Essentially, all people deserve equal treatment in the world they live in. It is the advocate’s role to shed light on things when equality is being denied, either unwittingly or purposefully. I do not think it is possible to knowingly deny someone their rights, do nothing about it, and then claim your actions aren’t purposeful.

One of the difficult things for me, and other advocates I’m sure,  is when the facts of the matter, the truth as it were, leads down a path we’d rather not travel. A path that is unsettling, scary, heartbreaking, or deeply disappointing. Moments  when we discover people or groups we believed in, and liked, and in some cases still like, were not entirely who they said they were. However, I cannot, nor should any other advocate, spare another their reality, not if that reality denies others their equality.

Recently I was asked why I make audio recording of certain meetings. Before I explain let me say that participants are always aware the meeting is being recorded. There are several answers to why they are recorded and while they will continue to be recorded:

  • the recordings serve as a reasonable accommodation for those of us with certain disabilities.
  • the recordings provide an accurate record of the meeting itself.
  • the recordings contribute to a desperately needed transparency.
  • the recordings help keep the light shined on the truth of what is being said and, for that matter, not said.
  • the recordings keep the fire of accountability well lit.

It was somewhat amusing recently when someone told me that when I write my blog about meetings I am using my interpretation. Well, yes, that’s true, and, when you think about it, rather unavoidable. After all, whose interpretation would I use but my own? However,  this person’s smile-producing observation does have relevance. My blog pieces are my perspective for sure. Which is why recordings of meetings will be made available to other meeting participants upon request. I can’t get fairer than that.

And that’s the truth.

Managing Dishonesty: Notes from an Advocate

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A person’s ability to lie is certainly equaled by a company or government’s ability to lie. The question is, how do you manage the dishonesty. My answer? Expose it.

I recently had a series of email exchanges with someone who heads up a healthcare company that provides services to people who live with disabilities, brain injuries to be specific. Some of this person’s assertions were so blatantly dishonest they reminded me of the Richard Pryor line ,when his wife catches him in bed with another woman, You gonna believe me or your lying eyes.

One thing that is critically important is to not allow the dishonesty of a particular healthcare provider to blind you to the fact there are healthcare providers that are truly spectacular.

I am too far down the road of life to be astonished or surprised or thrown by the arrogance of people. Still, there are times I’ve seen some of the arrogant spin such lines of bullshit I want to tap them on the shoulder and ask, Do really think anyone believes your bullshit? Tragically, some do. Which brings me to something H.L. Mencken said: “"No one in this world has ever lost money by underestimating the intelligence of the great masses of the plain people. Nor has anyone ever lost public office thereby."

All of us contribute to the bloodstream of our society. What we contribute either adds to or subtracts from the health and welfare of the world we live in. There is, I believe, no such thing, as a neutral contribution, you either tip the scales one way or the other.

As for underestimating the intelligence of people. While far too often Mencken’s quote applies, there are times it doesn’t. And when it doesn’t, people get voted out of office, arrogant bureaucrats find themselves on the unemployment line, and healthcare providers who have their heads up the ass of arrogance find themselves out of business.