Why I fight (the bullet)

The x-rays of the bullet lodged in the frontal lobe of my brain make the point; life happens to us whether we like it or not. So does death.  So do experiences whose realities are so ruthlessly sudden and savage that when (if) you come out the other side with something resembling your wits about you,  you’ll likely find yourself viewing things from a new perspective.  Kahrmann Head Xray 3

Now, needless to say, when I was held up in Brooklyn  in 1984 and shot in the head, things changed. Far, far more than even I realized at the time. The mind and body, it seems, have a way of digesting certain realities over time, particularly when trauma is involved. Were they to absorb so massive a reality in one fell swoop, I suspect some would implode. That would’ve been my fate.

It must be said, I suppose, that all my life I’ve acted, in one way or another, to expose and, hopefully, deplete bigotry’s presence. Whether  its racism, homophobia, anti-Semitism, sexism, the unforgiveable treatment of our senior citizens, and so on, I’ve never been able to sit on my hands, as it were, when  people are being oppressed, having their rights denied, and, as so often is the case when it comes to persons with disabilities (PWD), dehumanized. A reality that came home to roost when I became a PWD as a result of my brain injury and PTSD.

PWD are on the receiving end of some of the most vicious forms of bigotry imaginable. They are perceived and treated as if they are little more than revenue streams for the greedy, and, equally despicable, tattered remnants of humanity whose only purpose is to be trotted out  for display purposes when various agencies decide to use them as bait for donors, or visual fuel for self-aggrandizement, or both.

It would be naive to think this kind of behavior is linked solely to for-profit companies. Not so.   I’ve known and know some non-profits run by arrogant, self-absorbed, self-aggrandizing cretins who, in truth, don’t care a wit about the people they say they care about.  Next time you run across a non-profit company in business to help PWD, find out how many PWD they employ. Find out how many PWD are on their board of directors. And, while you’re at it, find out Kahrmann Head Xray 2what they do with the money they raise. See how much is used to directly benefit the lives of those they are said to care about. Find out – to the penny.

I am writing this essay, in part,  to help some people understand (many already do) why I advocate the way I do. Why, as some have rightly observed, my  advocacy style might be rather aggressive. Some would say, too in the oppressor’s face. Some have wondered why I’ve continued to advocate even after losing all my income in 2008 for doing just that (I would not remain silent when an Albany-based New York State Traumatic Brain Injury (TBI) Waiver Provider was  blatantly denying program participants their rights). Why I’ve continued to advocate even after the New York State Department of Health, also unhappy with my advocacy, simply took away my housing subsidy, and, along with the aforementioned provider and others, damaged my ability to be employed in the field of brain injury in New York State and, I suspect, Massachusetts as well.

All that backlash because I would not remain silent when I saw, in this case, individuals with brain injury disabilities having their rights denied,  sometimes brutally so. One particularly abhorrent creature comes to mind.  When a program participant would tell this creature about something they were having a tough time dealing with, this vile thing would invariably respond with, “To bad, so sad.” The program’s owner was well aware of this person’s behavior, and yet he works there still. Testimony,  I believe,  to the owner’s profit-before-people mindset.

As to why have not stopped my advocacy. There’s a constellation of reasons.  I was raised in a civil rights family, our minister marched with Dr. Martin Luther King Jr. Growing up me heroes included King and Geronimo. My list of heroes grew to include Mandela, Elie Wiesel, Medger Evers, Gandhi, Malcolm X, and more. All of whom suffered more for their advocacy than I ever have.  Since the shooting I’ve met others who are heroes of mine. People who are not household names. Here is a taste.

  • A remarkable woman who, while walking with her husband one wintry day pulling their two children on a sled, was hit by a snowmobile driven by an intoxicated human being. When she regained consciousness, she learned she was permanently paralyzed from the neck down.  She also learned her two had died in the accident.
  • A woman who sustained a brain injury and forever lost her ability to walk because of mosquito bite that led to meningitis.
  • A young man who,, while in a car on his way to a party with friends, was in a car accident. He suffered a brain injury and witnessed the decapitation of two of his friends during the accident.
  • A several women who suffered strokes in childbirth.

That’s just a few, I could go on. I have a long list of heroes. I also have quite a list of graves too. Those who didn’t make it, sometimes because the greed-based system failed.  I have plenty of motivation to fight.

And then, of course, for me there is that moment I came to on the ground after I was shot. That moment when I knew I was going to die. I was completely alone in that experience. One of the gifts of having survived that is this, there is nothing any government or provider or company or agency or individual can do to me that comes close to that hell. Not even a little.

 

Memo to BIANYS board and TBISCC members

The leadership of my state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and the Department of Health are all fully aware of the damage being inflicted on the lives of brain injury survivors throughout the state by the aforementioned DOH and, because of their silence (complicity), the brain injury association and the council.

The BIANYS board of directors and the members of the TBISCC need to dump their “heads of state” and get the bows of both ships pointed in the right direction – a direction that really does advocate for brain-injured New Yorkers and, in the case of BIANYS and others,  not simply use those of us with brain injuries to fill their coffers and inflate their egos.

This September 12 the TBISCC will meet and have some presentation from Mt. Sinai Medical Center (which is all well and good but history shows that all the presentations given to the council over the years have not translated into a single proposal by the council to the DOH; feel free to email me and I will send you all the council minutes if you find this hard to believe) and then they will discuss a concussion bill which is important but they will not say a thing about the brain-injured New Yorkers having their TBI Waiver services cut or being discharged off the waiver altogether, nor will they say a word about waiver participants who are having their housing subsidies cut or ended putting some at risk of homelessness and death. A federal judge protected one life when he stopped the DOH from throwing a brain-injured senior out of her home and asking her for $24,000 in the process.

BIANYS and the TBISCC have been dead silent on all this, yet on September 12th there council chair Michael Kaplen will sit in all his pompousness and there Judith Avner the BIANYS executive director will sit in all her feigned righteousness and both will claim straight-faced to care about those of us who live with brain injuries. If either cared they would not be silent about the matters mentioned in this particular missive, but they are. The DOH’s Maribeth Gnozzio may or may not be there, but if the DOH actually cared about brain-injured New Yorkers Gnozzio would not even be in the picture. All three of these folks seem to be tiny-minded narcissistic control freaks and in the long run, are no more important than bird droppings on a windshield (my apology to the bird population).

The challenge contained in this blog piece is to BIANYS board members and council members. Do your leaders truly represent where you yourself stand when it comes to brain injury survivors? Are you really comfortable with the fact neither group holds the DOH accountable nor does either group live up to its mandate? Are you truly comfortable with the silence both groups exhibit in the face of the DOH’s brutality to those you claim to care about?

For example, I would urge BIANYS board members to carefully review the ebits the organization sends via email to its members. Look at the advocacy section in each and you will not find one example of BIANYS advocating for anything other than giving its support to the concussion bill.  I would urge council members to ask for and review council minutes over the years and see if you can find a single example of a proposal by the council to the DOH. Email me at peterkahrmann@gmail.com and I will send them to you. I will also keep your identity private unless directed otherwise. I’ve already talked with some in both groups.

I would urge members of both groups not to fear Avner’s anger nor Kaplen’s for that matter. Kaplen’s bellicose behavior would be rather funny were it not so disrespectful to colleagues and those he claims to care about. Hell, there was a time Kaplen represented me in a lawsuit against the state’s Crime Victims Board which, at the time, was trying to stop reimbursement for any and all phone therapy sessions for crime victims. Kaplen will claim he was the only attorney willing to help which was not true, he offered to help and in the process and tried to get the state to pay him $500 an hour for his efforts (he was helped free of charge in those efforts by others, by the way), money that had the judge not rejected his request, would likely have been taxpayer dollars. I asked Kaplen to speak with me first when the ruling came in so we could discuss how to release it to the media.

Can you guess how I found out the judge ruled in our favor? From a reporter, a reporter Kaplen had called and bragged to. It was then I called and left Kaplen a voicemail message explaining that he should feel a sense of joy that he had not taken this liberty, say, 25 years earlier, because in those days I would’ve simply taken him outside and kicked his ass.

While there will always be Kaplens and Avners and Gnozzios among us, there will always be Kings, Mandelas, Gandhis, Wiesels, Wiesenthals, Darrows, Greers, Steinems, Father Mychal Judges, and more. The question, therefore, is this: are there any of the mindset reflected in this latter group that are on the BIANYS board and the council? If there are, then the days of Kaplen and Avner should be short in number.

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.