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.

 

The Tightening Noose

It is very rare my anger fires-up to slam the table top with fury level. Yesterday it did, blisteringly so.

When you are on a fixed income society deems worthy of a rent subsidy (Section 8 in my case) the rule of thumb is one-third of your income goes towards your housing, the subsidy pays the balance.  If you are single like I am, you have what’s called a one-bedroom voucher. The amount of rent your voucher provides for is determined by where you live. A one-bedroom voucher provides for a higher rent in, say, Westchester, New York, one of the wealthier community in the country. For a less prosperous community, the allowable rent would be lower. That’s fine. I’m okay with this.

Okay then. My current lease will be up soon and so I recently submitted documentation of my income to the area housing authority that oversees Section 8.  My monthly disability has gone up $18 and my monthly medical expenses (medication co-pays) have gone up $17.20 which means I am dancing on air with an 80 cents a month increase! (That dreamed about cabin cruiser will be mine in no time!) So, my income is pretty much the same as it was last year, which is why I nearly exploded in fury when I received notification yesterday that my portion of the monthly rent will increase by $45. That’s a big hit when you have a little less than $300 to cover food and gas for a two-month period.

I was boiling. On the phone, leaving a voicemail for the housing authority, hand slamming down on my writing table. Fury. There had to be a mistake. One third of my income to housing, cool. But an 80-cent increase in monthly income doesn’t translate into a $45 a month increase in rent. I was wrong. (Math and I have never been on friendly terms.) What I didn’t see coming was this: the allowable rent for a one-bedroom voucher in my area has been drastically reduced, anything over the reduced amount comes out of my pocket. It is moments like this when I want to throttle those hell  bent on protecting the rich and gut the middle class and the poor because God forbid those selfish slivers of slime sacrifice….what exactly?

Now, if someone reading this responds by attacking the government as if the government was and is this big bad nasty-ass entity, let me ask you something. Where exactly are the offerings from the private sector? Hmm? As for the very small minority who thinks that I or anyone in my position like it here because we are leeches, here’s a thought. Let me give you a segment of my life experience to live with; let me fire a bullet into your brain at point blank range, then come talk to me about how much fun your having.

By the way, the woman from the housing authority that works with me and the staff from the area Independent Living Center were very kind, very gentle, and very allowing of my anger and upset yesterday. God bless’m. They’re in no danger of being overpaid either.

In the meantime, the noose tightens, the pressure mounts. Thank God for books and coffee and friends and music and nature and, most of all, life.

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.

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.

Love for Patricio

When I learned this week that Patricio “Pat” Figueroa Jr. had died, it felt as if the air left the day. I was gutted.  He was 63, much too young to be leaving the world in my book.

Pat was, in so many ways, an extraordinary human being. Testimony to this can be found, in part, when you pause to consider the fact that I only met him once, several years ago, and yet, here I am, thoroughly staggered by his death. Granted, we had quite a few phone conversations, I write for Independence Today, the national disability rights newspaper he published. Our conversations ranged over all kinds of areas, including our love for New York City’s Lower East Side, a place where we both lived.

So what was it about this good and decent man that caused him to mean so much to me? I don’t know that I’ll be able to answer the question completely in this essay and I’m too damned sad to try. I can tell you that one of the reasons was his pure unfettered compassion for people and, in more than one instance, for me personally. He enjoyed reading this blog and after reading one piece that talked about my struggle to keep food on the table he told me the piece moved him to tears. The man knew poor, he knew struggle.

So here’s the thing, if Pat came to mean so much to me after so little time together, I can only imagine what those who knew him far better than I are going through. I’ve met his wife Denise and daughter Melissa.  I love them both too. In fact, only those who don’t pay attention would fail to love these three truly beautiful human beings.

I have no magic words to offer those deeply wounded by Pat’s death. What I can tell them, simply because it is true, is this: even death has its impotence. My father died when I was 15. For years I believed, on a thinking-level, that he was all gone. Then, one day, it hit me, he was (and is) present in my mind and heart on a daily basis. In a very concrete real way, he is still with me every day of my life. Death did not take the all of him away from me. Nor will death take the all of Pat away from those who loved him and love him still. He is not all gone.

pat figueroa

Pat Figueroa