Monthly Archives: November 2008

THE COST OF ADVOCACY

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Someone who loves me recently suggested I might want to consider pulling back on my advocacy for others when my advocacy might hurt me, or cause me to lose a job. I am moved by her kindness and caring and understand fully why she and others worry about my welfare. But I can’t hold back on my advocacy at all.


Dante Alighieri wrote, “The hottest places in Hell are reserved for those who in time of great moral crises maintain their neutrality,” or stay silent. Dr. Martin Luther King Jr. said, “The true measure of a man’s strength is not where he stands in times of comfort and convenience, but where he stands in times of trial and controversy.”


Whatever price I might pay for my human rights advocacy is far less than the price I would pay, emotionally, morally, spiritually and physically, if I chose silence. Moreover, whatever price I pay pales in comparison to those enduring the experience of being treated as if they are less human than others. A woman who is a good friend of mine and a survivor of brain injury recently pointed out to me that once you become disabled, you are expected to be obedient, you are expected to acquiesce to the will of others, often people that have anything but your interest at heart. She is right.


I will never sit quietly by when I see others being denied their civil rights, their right to live in dignity. For the last decade plus my advocacy has been focused primarily on people with disabilities, primarily people with brain injuries – like me. But I have and will always advocate for those who are gay, black, latino, Asian, Muslim, Jewish, etc. It is who I am.


I have lost jobs because of my advocacy. It is quite likely my current struggles can in large part be traced back to my unwillingness to keep my mouth shut when I witnessed people being denied their rights. It is a price I am more than willing to pay.


Consider the following observations:


  • If there were not millions involved in the Civil Rights struggle, we would not be referring to Barack Obama as President-elect Barack Obama.
  • Were millions not advocating for gay rights, there wouldn’t even be a dialogue about whether or not to give an official nod to gay marriage.
  • Had people not advocated, women may still not have the right to vote, black Americans would still be riding in the back of the bus and there would not be an American with Disabilities Act.
  • Were there not extraordinary consumer advocates like Ralph Nader there would not be cushioned dashboards and air bags and seat belts and more. Do you think the auto companies put them in out of the goodness of the hearts? If you do, then you have a better fantasy life than I do.

I have said more than once that I am willing to give my life in the struggle for equal rights for all. I meant it.

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HIS VOICE

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I know his voice absent the depth
Of meaning in English-accent tone
But not the depth of meaning itself

I know his voice soft gentle even
Shall we say fringed with the glow
Of hope and warm caress of kindness

I know love when I hear it
I know my father’s voice
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LIP SERVICE LOYALTY

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“I would rather come back without my arms and legs then come back without my brother,” said a World War II veteran. He and his brother were part of the June 6, 1944 D-Day invasion. His brother was killed the first day. This poignant example of loyalty to a loved one can be seen in Ken Burns’ remarkable World War II documentary, “The War”.


Sadly, this kind of loyalty is rare. What’s equally sad, though the anger that boils up in me when I encounter it delays my feeling sorry for the perpetrator, are the people who tell others they can be counted on if times get tough when, in truth, the can’t be counted on at all. I call it lip-service loyalty. Lip-service loyalists are more than willing to say they are loyal to others as long as they don’t have to be loyal to others.



For those of you who fall into this lip-service category, let me just say, shut your mouth. I mean it. Shut-up. You do damage and wound when you offer up some gussied up sentence about how loyal you are and how much you care. Those who believe you get badly wounded when they find out you are a bullshit artist, an earlier term for the lip-servicers among us.


I am not saying there is no loyalty out there. Recently I took a truly hard hit in life and even wrote an e-mail to those I believed in asking for help. In response ,some folks have been breathtakingly loyal and helpful. And then there were those who didn’t respond at all and those who said they would help and never did. Some years ago I would have told this latter group to go fuck themselves. But I think I’ll just let it go. And that’s not lip service.

LIVING WITH THE BRAIN INJURY GHOST

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Living with a brain injury is so hard sometimes it breaks my heart. I wrote those words to a friend of mine recently and as soon as I wrote them I knew this essay had finally begun. I’ve tried and failed to write it many times before. Writing about life with a brain injury is like trying to paint something in constant motion. It is nearly impossible. The brain injury never, and I mean never, stays still. Living with a brain injury is like living with a ghost.

I suffered my brain injury in 1984 when I was held-up on the streets of Brooklyn and shot in the head at point blank range. While doctors left the bullet in my brain because removing it would have resulted in more brain damage, no one told me I had a brain injury. I never heard the words traumatic brain injury, or TBI, the injury considered the signature injury of the current wars. The basic gist was this: No, Peter, you can’t play contact sports anymore and we are going to put you on anti-seizure medication for at least one year as a precautionary measure.

It would be 10 years before I learned I was living with brain damage, that the brain damage was impacting and damaging my life and, as a result, some of the people in my life.

If you think my story is unique, think again. Tragically, I am not alone. The brain injury epidemic in this country has been going on for a long time. More than 50,000 Americans die from them every year, including 7,000 children. More than five million Americans live with disabilities as a result of them and nearly 1.5 million Americans sustain brain injuries annually. Every 23 seconds an American suffers a brain injury. The Brain Injury Association of America reports that “(d)irect medical costs and indirect costs such as lost productivity of TBI totaled an estimated $56.3 billion in the United States in 1995.”

The brain injury ghost lurks everywhere and, as I imagine ghosts to be as rule, it can be highly unpredictable. It can be influencing your life experience and you don’t even know it. It can permeate light, sound, fatigue, anger, sadness, pressure, hunger, thought, perception, darkness, touch, balance, speech, memory, movement, coordination – in other words – everything and anything that you are.

Why is this so? Because your brain is your life manager. It is the filter through which you and I experience life. No doubt some will read this and say I am leaving God and spirituality out of the mix. Not so. It is through this miraculous life manager that we are able to experience God and spirituality in the first place.

But, like poltergeists, brain injuries can be mischievous, controlling, sneaky, dishonest, cruel, misleading and so forth. They can be so insidious at times that it may take you awhile to realize, if, in fact, you ever do realize, that they’ve been running the show and wrecking your daily life and, in many cases, the daily lives of others. Very often the people you like and love most. These ghosts can vandalize our daily life. They can be scary.

Yet despite these harsh realities, far too many who say they want to help and support those of us living with brain injuries have little if any idea of what it is like to live with one. In some instances, they are so predisposed to certain views, beliefs and motivations that they will never have any idea what it is like to live with brain damage.

In some, I would like to think, rare instances, the inability to understand is rooted in the fact they simply don’t care. We brain injury survivors are seen as a way of making money. Some health care providers are more about gutting and manipulating an already pitiful and unforgivable health care system than they are helping survivors ascend to their maximum level of independence.

Some in Washington and across the country squawk about the Canadian and French health care systems. They complain these systems are socialized medicine. They hope we will hear the word socialize, convert it to the word socialism, convert that word into the word communism, think them synonyms, and recoil in horror. Spare me.

Here’s how I see it. Everyone has health care coverage in Canada and like minded countries and no where near everyone has health care coverage in my country. When you are sick or injured you want health care. When you’re bleeding profusely in an emergency room you don’t give a rat’s ass whether your health care is socialized or managed care; you want the health care. In fact, you deserve it.

STRENGTH & OUR ADDICTION TO VIOLENCE

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I will soon call an extraordinary man who has reached out to me to talk about our shared desire to see our culture’s addiction to violence decrease, if not vanish all together. Particularly the grip this addiction has on so many of our young people. I am deeply humbled by his request to connect with me.

I wanted to talk a little about this addiction to violence.

Before I do, let me relate a fairly well known piece of American Indian lore. A warrior goes to his chief and says, “Chief, I have two wolves battling inside me, the good wolf and the bad wolf. Which one is going to win.” The chief says, “Whichever one you feed the most.”

There are many forms of nutrition for the good wolf, chief among them, perhaps, is honesty. Honesty may be the greatest form of nutrition for the good wolf, dishonesty, the favorite dish of the bad wolf.

Having said this, let me say that I have both received and delivered violence in my life. I am no saint. Yes, it has been many years since I have delivered any, but I have put men in hospitals and my violence destroyed my first marriage. And my first wife was, without question, one of the most extraordinary people I have ever known.

But addiction to violence is like any other addiction. You cannot get well by yourself. You cannot do it alone. The sobbing man who swears he will never be violent again is no different that the ashen faced vomiting alcoholic or addict who swears they’ll never use again. The can all pass a polygraph in that moment of gut searing agony, but unless the get real treatment, the man will be violent again the alcoholic and addict will use again. It is as simple and horrible as that.

And far too many people never choose to declare war on their addiction and by doing so, discover the wondrous relief when you realize how truly wonderful it is that you don’t have get well all by yourself. And life free of addiction? Well, it doesn’t get any better, I can tell you that.

There are many reasons for our penchant for violence, and I do not pretend to know them all. But I do know that one of the reasons we are, as a culture, crazy-addicted to violence is this. We are raised to believe the following is true. Your ability to inflict violence is a true and accurate measure of your strength. Is that true? No. It’s bullshit.

We are taught that crying is weak, admitting we are afraid is weak, admitting we lack knowledge in one are or another is weak, walking away from a challenge to fight is weak. All not true. How do I know? Try these questions on for size.

– If it’s an act of weakness for you to cry, then why is it so hard for you?

– If it is an act of weakness to admit you lack knowledge, then why is it so hard for you to admit it?

– If it is an act of weakness for you to admit you are afraid, then why is it so hard for you to admit it?

– If it is an act of weakness to walk away from a fight, then how come it’s so hard for you to do it?

The discovery these questions lead us to is this truth: real acts of strength are not pleasant. Real acts if human strength are not easy and they are not pain free. But they are rewarding and freeing.

Consider this. Few human events take as much strength as the strength a woman displays when she gives birth. Yet, I dare you to walk up to a woman in the middle of labor with a mic in hand (make it a mic with a cord so you can pull it out from where she is going to put it) and ask her, Do you feel strong right now?


The people in our country, the youth in our country don’t need support in getting free of their addiction to violence. They deserve it.

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