Tag Archives: advocacy

A word on oppressors & advocacy

Any company, agency,  government, school, healthcare provider, individual, who seeks to minimize the voice of those they claim to serve is an oppressor. To be fair, some get caught up in group-think and find themselves supporting decisions, methods, laws, protocols, directives that oppress a group or groups of individuals. Others know bloody well what they are doing. Some oppress out of a palpable dislike for those they claim to serve, while others do so because those they serve, people with disabilities (PWD) for example, are little more than revenue streams in their eyes. Moreover, PWD have been used as fodder for those who revel in the sewage of arrogant self-aggrandizement.

The question is, a willful oppressor or an oppressor out of ignorance, or, equally relevant, out of fear? Fear of reprisal if he, she, or they hold the oppressors accountable. Dr. Martin Luther King Jr. was absolutely right when he said, “In the End, we will remember not the words of our enemies, but the silence of our friends.”

Back in 2008 I lost all income and all employment because I would not remain silent when a particular New York State health care provider, a Traumatic Brain Injury Waiver provider to be exact, was denying the rights of those participating in the program in part by community-based warehousing. In other words, put as many difference services on the shoulders of the program participant so you can bill (make money) as much as possible. It was made very clear to me that I needed to go along to get along or lose everything (meaning, in this instance, all my income and healthcare coverage). I chose that latter.

I knew then, just as I do now, that real human rights advocacy (as opposed to lip-service advocacy) can be a bloody business. If you are the real deal on the advocacy front you’re in good company: Mandela, King, Gandhi, Susan B. Anthony, Malcom X, Medgar Evers, Harvey Milk, Elie Wiesel, Simon Wiesenthal, Gloria Steinem, Betty Friedan, Frederick Douglass, Malala Yousafzai, just to name a few.  All of the aforementioned paid dearly for their advocacy. Loss of freedom, loss of life. So, when it comes down to it, any price I may have paid pales in comparison.

It seems to me the job, if you will, of any real human rights advocate, is to, by any non-violent means necessary, drag the oppression and the oppressors into the open, and hold them accountable.

Recently I was pondering a column about accountability. I found myself wearing a rather large smile when several thesauruses listed accountable and responsible as synonyms. I know  a few oppressors who, on the one hand, would, with misplaced pride and predictable defiance, say they do their jobs responsibly. Yet the moment you hold them accountable,  these folks would slither under a rocks with remarkable speed and spit out venomous accusations of unfairness at those holding them accountable.

Oh well.

Equal rights and the wounding of others

I take no pleasure in wounding others. None. However, no equal rights advocate gets to choose the oppressors. They are who they are. They are accountable and must be held accountable.

You can’t play favorites as an advocate. Silence in the face of oppression is never an option. Silence empowers the oppressor. Silence in the face of oppression is not in my repertoire. It never has been.

As an advocate you will inevitably wound others along the way.  But if, for example, someone denies people with disabilities a seat at the table, I am going to say so.  If a company providing services to people with disabilities  in the community  engages in community-based warehousing, I am going to say so. If a non-profit organization designed to help others offers little more than lip service, I am going to say so. If leaders from any walk of life are  are among the oppressors, I am going to say so. It’s what advocates do.

Knowing people have been wounded by my advocacy is not pleasant. There are, however, reasons I will not stop. At the top of the list, those being oppressed suffer the deepest wounds of all. And then there’s this. Knowing that oppressors have a found a way to live with themselves as oppressors has made it much easier to live with myself as an advocate.

Those who have been wounded by my advocacy should take a moment to reflect. Perhaps they will realize their wounds are self-inflicted. Those that have complained about me remind me of  someone complaining to a friend about getting a speeding ticket.  Complainer: “That S.O.B. cop gave me a speeding ticket, can you believe it?” Friend: “How fast were you going?” Complainer: “Around 70.” Friend: “What was the speed limit?” Complainer: “Forty-five.”

Sunshine is the best disinfectant and my task as an advocate is to bring things that impede or deny equal rights into the light of day.  My suggestion? Don’t speed.

Time to say goodbye to BIANYS’ Avner

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

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

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.