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.

 

Backstabbing Cuomo & New Yorkers with disabilities

Examination of proposed changes to the by-laws for a New York State brain injury council reveals a state agency’s attempt to weaken a council, already in disarray, put the council under the state’s control, and weaken the current requirement that people with brain injuries and their families be fairly represented on the council.

The council was signed into being by former New York State Governor Mario Cuomo and the proposed changes are being proposed by current governor Andrew Cuomo’s department of health. It is reasonable to believe, given the current governor’s admirable efforts on behalf of people with disabilities to date,  that the DOH is engaging in practices that violate all Governor Cuomo stands for and all his father stood for.

Now, let’s take a look at these proposed changes.  In one glaring instance of undermining the council, the state DOH proposes removing the following clause from the bylaws in its entirety: “Assuring the appropriate consumer representation of persons with brain injuries and their families is represented in the activities of the Council.”  Were this to be removed the bylaws would in no instance include a requirement that there be ample and fair representation of people with brain injuries and their families on the council. One has to question the council’s willingness to oppose this, especially since the person still claiming to be the vice-chair, even though her term on the council ended more than nine years ago, Judith Avner, the Brain Injury Association of NY State’s executive director, is the very person who blocked persons with brain injury from being on a now defunct committee that was seeking to represent persons with brain injury.

Proposed changes on pages 3 and 4 of the bylaws would, if adopted, allow a  member of a state agency to be the vice-chair of the council (something the current bylaws appropriately blocks because the council is designed to be an independent entity) and the bylaws put the vice-chair in charge of the executive committee. This would allow the state to essentially take over the council, something that must be fought and resisted at all costs.  These proposed changes weaken the requirement for council members attendance (thus weakening the council) by allowing council members to miss two meetings over a period of two years without risking their place on the council rather than two meetings in one year as the current bylaws requires. The council is required to meet a minimum of three times a year,  in case you think the current meeting requirement for council members is too strict.

And then, the DOH proposes a weakening of council documentation. Current bylaws require that a written record of the meeting be mailed out to council members “within 30 days of a meeting.” DOH wants that requirement replaced with “as soon as practicable.”

As a July 5, 2011 post in this blog accurately observed, this council, called the Traumatic Brain Injury Services Coordinating Council, has never done its job as designed by the state legislature: “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.”” As this blog previously reported , “more than 10 years of TBISCC meeting minutes tell us the council” has “failed to come up with any real comprehensive proposals for the DOH”at all. Not a one.

History tells us this is just fine with the DOH. Over the years the DOH has proven resistant to any kind of real inclusiveness and input. On page 6 of the proposed changes, the DOH wants the word expert removed in a sentence that currently permits the council  (italics mine) “to provide technical and expert assistance to the Council…” Given the DOH’s resistance to input, one can only conclude the ridding themselves of having to deal with real experts makes it even easier for them to reject input.

The DOH has a history of being unfriendly to New Yorkers when it comes to brain injury. Before the TBISCC’s meeting last December, the DOH’s Cheryl Veith (who later said she was directed to do so by her superiors yet refused to identify said superiors) sent out an email that included this:

Executive Law 166
The Department of Health is required, pursuant to Executive Law § 166, to keep a record of those who appear before it.   All attending the meeting need to complete the attached form.  Below is the form that will need to be completed upon your arrival at the TBISCC meeting so it will save time if you complete it before you arrive. Please print the completed form and bring to the meeting.

Several problems with this: The form would require anyone attending to share the personal address and phone number. Second, the law doesn’t apply for two reasons. First, those in attendance are not appearing before the DOH, they are attending a meeting of the TBISCC which is an independent body. Second, the form is meant for lobbyists, not for members of the public who should not and are not required to hand over the personal information at public meetings.  And then, there is this: the TBISCC was perfectly aware of what the DOH was up to, and they said nothing.

This writer contacted Robert Freeman, head of the NY State Committee on Open Government, who confirmed that Executive Law 166 did not apply. Freeman called Deputy DOH Commissioner Mark Kissinger who agreed the law did not apply. Nevertheless, when this writer and others showed up for the meeting, there Veith was, trying to insist members of the public fill out the form.

The DOH and council’s penchant for stiff arming the public  is also revealed by the fact there is a TBISCC meeting this Wednesday, January 23, and still the council and DOH have not released the agenda. The meeting will run from 10:30am to 3:30pm in Meeting Room A of the New York State Museum in Albany.

There are a few bylaw revisions proposed by the DOH that do make sense. Limited the chair’s term to one year rather than two, and having elections by written ballot rather than voice vote. I would also suggest a term-limit clause permitting any chair and or vice-chair to serve no more than two consecutive terms, thus freeing the council from being under the grip of the rather dictatorial likes of former chair Charles Wolf and Michael Kaplen. The latter still claims he is the council’s chair even though his term as chair expired years ago.

Lastly, for now, there is this. Several council members are directly linked to BIANYS and BIANYS gets a sizeable annual grant from the DOH. Is it any wonder that the council has a documented history of not providing the DOH with anything mandated under the above reference Public Health Law? Is it any wonder that the council avoids holding the DOH accountable for some of its destructive behavior towards those with brain injuries who find themselves in the state’s TBI Waiver?

The problems at set forth here go all the way to the top of the DOH. This writer has sent several emails directly to DOH Commissioner Dr. Nirav Shah (and called his office several times) outlining the council’s problems. He has never responded. Never mind that the Kahrmann Advocacy Coalition has more members with brain injuries than the BIANYS has had in its entire history.

I Hear I’m Controversial

Sometimes a part of our truth can be right in front of us and we can’t see it. Case in point: I sheepishly confess that I was utterly entirely flabbergasted this morning when a friend of mine said, “Well, you know you’re controversial, Peter.”  It was, I’ve gathered since talking to others since this morning’s conversation, and enduring everyone’s laughter by the way, a rather prominent deer in the headlights moment for me. I instinctively responded by saying, “Why should equal rights be controversial?”

They are.

I asked them why they think I’m controversial. The theme of their answers was the same. You call out people, companies, agencies, government agencies on their actions or lack of actions. You don’t politically walk on eggs. You are deeply sensitive to all minorities and you don’t hesitate to identify those who persecute them, even when you know it is going to cost you. People know if you see people being mistreated you’re going to say it and name names. One person said, You drag things into the light.

Well, if that all makes me controversial then I’m glad I am. I was recently in a meeting where someone I respect a great deal said part of advocacy is about pushing the envelope.

One person said, Some folks hope you’ll just go away.  Those who hope I’ll just go away are those who through action or inaction support things that deny people their rights.

I know of too many people whose support for minorities like people with disabilities, Gays, Lesbians, blacks, Latinos, Jews, Muslims, Native Americans is cast in lip service and self-aggrandizement. Bad news for these folks. I’m not going away. I can’t. I’m controversial.

It’s All About Respect

In order for relationships of any kind to work, each person must be able to be who they are safely with the other. I’m talking about emotional, physical, spiritual, and intellectual safety. It is all about respect.

Too often people give up who they are to remain connected to another. It never works, at least not if happiness and fulfillment and your ability (and right) to be you is concerned.

Judgment is one of the primary poisons that can make being who you are risky business. People see the way you look or hear the way you sound and in the blink of an eye draw all kinds of conclusions, more often than not inaccurate ones. If you are black or Latino, Gay or Lesbian, Muslim, female, Jewish, and so on, the judgment flies. When I met my first wife she’d just left the high-paying field of modeling for a low-paying job in marketing. When I asked her why she’d made the change she said, “I was tired of people talking to my looks and not me.”

Judgment precludes respect. This holds true if you live with a disability as well.  I’ve seen people who for some odd reason conclude that people who use wheelchairs must be hard of hearing. People often draw the same baffling conclusion about people who are blind.

And then there is the number one well-founded complaint I hear from people with disabilities; we are treated as if we’re children. There is no respect in that.

Respecting others is rooted in a commitment to accept others for who they are, which requires being on the lookout for when a lifetime of inaccurate teachings may be skewing your view of another, including your view of your self.

Many of us are slaves to our histories and as a result do not see ourselves clearly. If you were raised being told you were stupid or ugly or bad you may still be under the grip of those damaging inaccuracies. Equally true, if you were raised being told you were better than  or smarter than or better looking than you too are under the grip of damaging inaccuracies.

Dare to discover your truth and the truth of others; doing so is all about respect, for others and your self. Others deserve the respect. So do you.

Note:  The title of this essay is the title of the book I am working on about my experiences in the field of brain injury.

Criminalize Dehumanizing People with Disabilities

If you deny someone their equal rights you deny them their freedom, and for that you should face criminal charges.

This happens all to often in the world of disability. I’ve seen it, endured it, fought it, and will fight it until the end of my days.

If you are going to treat someone with a disability as if their humanity is less whole than yours, you should be charged with a crime. If you are going to treat people with disabilities as if each and everyone of them is a cottage industry for you to profit from, same thing, criminal charges should be brought to bear and if you are convicted you can do the community service by going to jail. In other words, leave the community.

I hear many things from many people on many fronts, particularly in the world of people like me who live with brain injuries. Sometimes I can reveal my sources, sometimes not. Sometimes discreetness is the wisest choice, sometimes in your face is. I am willing to play both cards if I genuinely believe doing so will further equal rights and or hold accountable those who willfully deny others their equal rights.

Here is an example that typifies a lot of what goes on. I know someone who lived with a brain injury. She is extremely bright and nobody’s fool. Were she in a coma she could likely outwit 99 percent of the people I know. Anyway, she was attending a day program and made it known she wanted to get a part time job. So the program tells this woman that they will clear out a little office space they have and set it up with candy and soda that she can sell a few hours a week and she can keep some of the money. This woman said to me, “Do they think I’m stupid or what? Do they think I don’t know that the only reason they’re offering this is so they can bill for the hours I’m in selling their damned candy?” In other words, all this Albany-based provider cared about was not losing the money they would lose if this woman had a part time job in the, wait for it, community!

There was a time in life when I believed that in everyone’s heart of hearts there rested an active or untapped reservoir of compassion for others. Wrong. There are plenty of people that simply don’t care, not at all. And they are the ones that need to be exposed,  criminally charged when possible, and given a leave of absence from the community, and if not the community, a permanent leave of absence from working in an arena designed to help people reach their maximum level of independence.

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