Category Archives: advocacy

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.

The Cost of Advocacy

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Before I get started here, let me say that nothing but the end of my life will stop me from advocating for every person’s inalienable right to equal rights. Okay, now that we’ve got that out of the way, let’s begin.

It was early 2008 when I found myself in the Hannaford Supermarket talking with my friend, Eric. It was not long after I’d had all my workshops for brain injury survivors slammed to a halt and my income removed on a dime because, in short, I would not turn a blind eye or remain silent when witnessing people with disabilities, in this case brain injuries, being denied their rights and treated as if they were nothing more than wayward children.

“How you doing?” Eric asked. Eric, I should say, is someone I worked with for years and a man I genuinely love like a brother.

“I’m alright,” I said, “When I get really down I think about King and Gandhi and Medgar, and given the fact they were assassinated, I’m not doing too bad.”

“Sounds like you were assassinated,” Eric said. In a way, I knew he was right. I also knew I was alive and could and would continue advocating for people being denied their equal rights.

During this time I’d begun looking into rumors that a man who headed up a neurobehavioral project for the New York State Department of Health did not have the credentials he said he did. In time the investigation would reveal the rumors were true, he was claiming to have college degrees he did not have and had been presenting himself as this in his job for the state and in his private professional work for well over a decade.

Now the thing about investigations, an honest following of the facts, if you will, is sometimes what gets uncovered bruises people you like and care about and or leads you to discover people you thought were totally honest and honorable were not that at all. If you are wedded to the truth, you keep going, because, if you are an advocate, you know your work is not about you, it is about the ongoing effort to make sure all people are given their equal rights, period.

I lost a friend as a result of the above referenced investigation. A man who was, in my view, one of the best and most seasoned advocates I know. Still is, I am sure. However, people he cared about were wounded as a result of what I uncovered. I can’t help that and certainly didn’t intend that. I also can’t help where the facts led. If people knowingly took part in a process in which survivors of brain injury, their families, and healthcare providers were being misled, there are consequences. Can’t and won’t help that either.

But here’s the thing. The pain or wounding I’ve endured and the pain and wounding my honorable friend endured are nothing in comparison to the pain and wounding people with disabilities live with day in and day out when they are being treated like they are little children or being denied their equal rights. Which is why I will keep on advocating and I know my friend will too.

For those wondering who my friend is, I will never tell you. Why? Because he is a good and honorable person who, like me, is imperfect, and I’ll be damned if I am going to wound him because a moment came along in his life when his loyalty to a misguided person he loves blinded him to the greater good on the advocacy front. After all, like me, he is only human, and is allowed the imperfections that come with that condition. After all, he has equal rights too.