If you’re going to lie to me….

I don’t ask for much in life other than respect, so, if you are going to disrespect me by lying  to me, the least you can do is make an effort to make it a good, show a little creativity for God’s sake.

I’ve decided to rummage around in my mind and, perhaps the minds of others, to develop some fun, at least for me, responses to people who lie to me so brazenly and obviously I don’t know whether to burst out laughing and ask them if they’re joking or simply stupid enough to think I believe them, or smack them upside their “head” with a verbal dagger that says, we both know you’re lying and you’re such a self-absorbed little twit you’re going to stand by your stench-rubbish anyway.

Anyone who knows me knows I have no ability to be silent when someone’s rights are being denied. I don’t care of it’s people with disabilities, people who are Jewish, African American, Latino, Muslim, veterans, members of the LGBT community, women, etc., etc., I’m not about to stay silent. People who know me also know it is very likely, particularly of you are a public official or someone in a position of authority, that I am going to expose your bigotry for all to see. 

All that aside, let me say there is a special place in hell for people whose claim to care about the rights of others is nothing more than lip-service smoke screens. A form of dishonesty so glaringly obvious I want to grab them by the throat and say, “Why not grow some backbone and say out loud that you don’t give a rat’s ass about these people and you just care about money and power?” 

What’s somewhat amusing is the feigned indignity performances I get to see when I call someone out for lying, for being a hypocrite. They put so much effort into their performance (without exception they’re lousy actors) I’m surprised they don’t snort and dribble out of the corner of their mouths, go into convulsions, and start speaking in tongues. Some feign astonishment to such I degree I expect them to allow their simian roots to take over and start pounding their chest.

Many of the lies I see these days  come from those who claim they are committed to protecting the rights of New York residents who live with brain injury disabilities. Since their commitment is limited to the effort it takes to say they are committed, the least they could do is make a commitment to develop their lying skills. I’ll probably catch them anyway, but at least catching them might pose a sliver of a challenge. However, exposing them will not.

So, here’s the thing, if you’re going to lie to me, make an effort, or give us both a break and shut up.

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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.

 

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.

The heinous among us

If you know someone with a disability then you know there are people in the public and private sector who willfully make and support decisions denying equal rights to people with disabilities (PWD).  Decisions and policies that put peoples homes  and lives  at risk, deny, reduce or take away services that allow PWD to attain their maximum level of independence, send them out of state for sub-par care; in short, treat them as something less than human.

I do not understand how one human being can treat another human being like they are little more then feces and sleep at night. People who treat people like this are the misguided heinous among us and should be exposed and held accountable at every turn.

Some in the private sector see us (I live with a disability) merely as a way of making money. We are revenue streams, nothing less, and certainly nothing more. Not long ago there was a phone conference in my home state of New York among various parties involved in the state’s Traumatic Brain Injury Medicaid Waiver. The idea of allowing family members to act as home staff and get paid for doing so came up, the argument being that the presence of family, of loved ones in someone’s care, can help in the rehab process.

Some in this phone conference, including providers, thought this was a good idea. However, another provider complained that allowing family members this role would mean he would “lose hours.”  While I will not name this person, I know him. He told me once he had considered becoming a monk and, as far as I know, attends church on a regular basis.

Now, I’ve been an equal rights advocate for some time. I’ve never run across a government agency more ruthless and inhumane in its treatment of, in this case, people with brain injury disabilities, than Andrew Cuomo’s New York State Department of Health.  If actions speak louder than words, they do not care a wit about the lives of New Yorkers with brain injuries.

First of all, those in the DOH who oversee the TBI Waiver program and write the TBI Waiver Manual have absolutely no formal training or formal education in the brain. Not one iota. When I recently asked Deputy DOH Commissioner Mark Kissinger for the names of those in the DOH drafting the TBI Waiver manual, he would not tell me. Finally, a FOIL request pried the names from the DOH’s secretive claws. Who are those drafting the manual? Kissinger, Maribeth “Knuckles” Gnozzio, Lydia Kosinski, a DOH attorney and a member of the office staff. Not one of them has any formal training or education in the brain.

Along with the DOH, New York has the Traumatic Brain Injury Services Coordinating Council. Advocates for people with brain injury disabilities are waiting to see if, under its new leadership, the TBISCC will, finally, hold the DOH accountable, present real proposal to the DOH, and publicize all the council is doing online for all to see. It has been repeatedly suggested to the TBISCC that it create its own facebook page and or start its own webpage. This has not happened, yet, but if they are as sincere as we are hoping, these webpages will appear.

The TBISCC was formed by an act of the New York State Legislature in 1994 to ” 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.” One need look no further than the council’s minutes to confirm the DOH’s lack of interest in doing anything to respect and grow the lives of NYers with brain injuries. Consider this. Not once, in 20 years, has the DOH asked the council for input on how best to serve New Yorkers with live with brain injuries.

Some time ago a friend of mine was cautioned about me by a now retired individual who was in the field of brain injury: “Be careful he doesn’t turn on you,” she warned.  This individual knew at the time that I don’t “turn on” people. She also knew at the time that I will expose people or groups, private or public, who are denying people their rights, treating people as if they are less than human. Such was the case with this person. She was once part of a committee drafting a proposal on behalf of people with brain injuries when other committee members pointed out there needed to be people with brain injuries on the committee. She said this was not true. There was no need for people with brain injuries, after all, she explained, she spoke for them.

Rubbish.

The heinous among us. The greatest justice we can do ourselves and them, is to bring their behavior into the light, expose them. Whatever discomfort this might cause them is nothing compared to the torment and suffering their putting PWD through, and making a living doing it.

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.