Tag Archives: kahrmann

DREAMS IN ISOLATION

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I heard Bruce Springsteen once say that a song title can open the door to the song. The same can be said of an essay title like this one, Dreams in Isolation. While isolation is a web many of us are caught in from time to time, it can be, if you allow silence or, for me anyway, music, a method of allowing an idea to move, shift, emerge. Dreams are allowed to come to light for the first time or come back into the light after having left for a time. The thing to do is pay attention and, if you like to write, write it down – if you’re fast enough.

Although I may not be as fast as I was some years back, I am honest now. Therefore, when I write things down, some silly twist of disingenuous ego doesn’t distort the phrasing; at least I don’t think so. God I hope not. You can spend an enormous amount of time second guessing things, don’t you think?

For years I have thought about writing an essay about my closest friend, Michael Sulsona. He is, in my heart, my brother. In more than 30 years of friendship, we’ve never had a fight. That’s remarkable. Even now as I ponder writing about him, I know I can’t get close to the extraordinary bond between us. I can tell you that our bond is built, not simply on a genuine love and respect for each other, but on our capacity to accept each other for who we are. I also think we have each seen so much brutality in life that we just don’t see the point in fighting.

Here, I’ll tell you what. I’ll give you a glimpse of Michael’s ability to right size a moment with an expertise matched by no one I’ve ever known. First, some background.

Michael was born and raised in Brooklyn. He joined the Marines when he was a teenager and went to Vietnam. When he was 19, he stepped on a mine and as a result lost both his legs above the knee. You take that experience and all else that comes with going to war and you know Michael has known and seen things the large majority of people have thankfully been spared.

As most of you know, I was held up and shot in the head at point blank range in 1984 leaving the bullet lodged in my brain and loss of hearing in the left ear along with the brain damage that happens when you don’t duck quickly enough.

I was living in New York City’s Lower East Side when I was shot and there came a time when I was having a lot of flashbacks. I called Michael and he said he’d come pick me up and we’d go for a ride.

An hour later we are stopped at a red light at East Second and Avenue A when Michael says, “Hey, you’d agree we’re a little fucked up, right?”

I say, “Well, yeah, a little.”

He says, “Whattaya mean a little? You got a bullet in your brain, fucked up hearing. I got no legs, lots of shrapnel in my body, fucked up hearing. Don’t you think we’re a little fucked up?”

I smile and laugh, “I guess so.”

He says, “You guess so? You see that woman?” and here he points at a couple in their twenties holding hands and crossing Avenue A. They were coming in our direction. They were both model gorgeous. He looked like he just stepped out of GQ and she looked like she just stepped out of Cosmopolitan. The what’s wrong with this picture aspect of this glamorous image was the pizza she had balanced on her head. Michael says, “You see her? She’s never stepped on a mine, she’s never been shot in the head, and she’s walking across the street with a pizza on her head. You think we’re fucked up?”

Like I said, I’ve never known anyone who can right-size a moment with greater speed, accuracy and humor.

As to what any of this has to do with Dreams in Isolation? I haven’t a clue. But hey, it’s my essay, and I can promise you one thing, I wasn’t balancing a pizza on my head when I wrote it either.

Love you, Michael.
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KAHRMANN INTERVIEW: A BOOK ABOUT WORKING IN THE FIELD OF BRAIN INJURY

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An Interview with brain injury survivor Peter S. Kahrmann regarding his plans to write a book about what it like to work in the field of brain injury for more than 13 years.

– Why now?
– Several reasons. I’ve been in this field for a while and have, I think, seen the best and the worst of it. Last year I learned I had a heart condition, which in itself might not end my life, but it certainly reminds me that none of us is here forever, and because I think the world of working with people who live with brain injuries is particularly vulnerable.
– In what way?
– Well, from a historical perspective, it’s a fairly new field, especially working with people with brain injuries, with disabilities who live in the community.
– That sounds as if there are some great opportunities.
– Absolutely true. And if people come into the field or are in the field to truly help survivors gain their maximum level of independence, it is a beautiful thing. And I know quite a few people, I mean really good people, who are in this field, this arena for honorable reasons.
– And, of course, there are others.
– You’ve got people in this field who are in it for nothing but the money. You’ve got others who are in it because they want the world to think they are these great and wonderful benefactors when they are anything but. You’ve got some who could give a rat’s ass about survivors and their families because they are just a means to an end.
– How so?
– Okay, let’s say I come up with a new medication that if it sells will make me a ton of money. Being seen as some cutting edge person and making the ton of money is what I really care about; all I want the survivors to do is take the med.
– Does that happen?
– I think it probably does, but what I’ve seen is something analogous to that.
– For example?
– I’ve seen some who think they and they alone have the answers and know better than anyone else who goes about inflicting their will on survivors, providers, and, when folks like these have too much power, especially power in high places, they can be hard to stop.
– You’ve worked in New York.
– Yes.
– New York has a brain injury waiver, the TBI waiver.
– Yes, and if you read it and its design, I think you be hard pressed to find a better one. The whole design of the waiver, which itself is a form of Medicaid reimbursement for providers who work with brain injury survivors in the community who are poor, or who have put there monies in a trust in order to get waiver services, is pretty special. It’s consumer based.
– What’s a consumer?
– Somewhere along the line, the decision was made to call survivors consumers.
– Like a consumer in a free market place.
– I suppose so. I don’t know any survivors who like the term, although I’m sure it’s well intended.
– What would survivors like yourself preferred to be called.
– People.
– …Hard to argue with that.
– That’s not what some would say.
– What do you mean?
– One of the common challenges faced by people with disabilities is dealing with people who treat us as if we are less smart, less valuable, even less human than other folks are. The whole issue at its core is very much a civil rights issue. Blacks, gays, lesbians, Latinos, Asians, the Irish, Italians, have all, at one time or another, been treated as if they were lower class, less than others. There are several poisons in the mix but one of the deadliest is that those who hold the reins to your ability to stay in the community wield a great deal of power. And some are more than willing to say, tow the line, do what you’re told, or out you go.
– That sounds vicious.
– It sounds vicious because it is vicious. Greed, the lust for power, money, are all poisonous in and of themselves. Lincoln once said, “Most men can handle adversity but if you want to test a man” or woman’s “character, give him power.” I’ve seen good people turn rotten and spoil because of it. Some don’t see it, and in their hearts believe they are doing the right thing for others, some see it, know it and are so messianic they don’t care. And then there are the wolves in sheep’s clothing.
– Really?
– Sure. They come across as nice, kind, caring people yet behind the scenes will stab people in the back without blinking an eye.
– Has that happened to you?
– Oh God yes, more than once.
– Is that why you are writing the book?
– No. It will certainly be part of the book, but no. I’m writing the book because I think I can. I want to write it honestly, with integrity, and with the sole purpose of telling the truth about my experience as best I can.
– Aren’t you angry at those that you say have stabbed you –
– And others –
– And others in the back?
– Sure. But it’s part of the journey. I try to teach people to be angry at the behavior, forgive the person. Hate the behavior, not the person. Hate the bigotry, don’t hate the bigot.
– That’s not easy.
– True. But it’s easier than walking around with hatred in your heart.
– Okay, Mr. Kahrmann. We need to pause here. We’ll continue this interview again soon.
– Great, talk with you then. And thank you.
– Thank you.

TO TOUCH HUMAN HEARTS

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I know I walk on shifting sands trying to describe my desire to touch as many human hearts during my journey through life as I possibly can. Any success I’ve had or may be having in this endeavor eludes me. Current American culture does not offer an easy welcome to the chords of intimacy, gentleness, kindness, love, gratitude or remorse. Too often we are emotionally and spiritually tone deaf, driven instead by a distorted understanding of success. An understanding that says success can be and should be measured by the money you make, the clothes you wear, the car you drive, the shape of your body, the home you live in, and so forth.

While each of us has some say in what we inject into the bloodstream of our existence, a say in what we inject into the bloodstream of the lives we touch and the world we live in, we do not have total say. Nor should we. There is a healthy and necessary form of humility that comes with knowing this, that comes with knowing that the all of things is not up to each of us. It keeps us right-sized, and that’s okay. Promise.

A SEAT AT THE TABLE

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In one way or another I have been a human rights activist for nearly all of my 54 years. I was raised in a civil rights family. Our minister marched with Dr. King. I can remember the Sunday service after Dr. King was assassinated when the reverend Bill Daniel took all of us to task for Dr. King’s murder. We all play a role in creating a society where things like this happen, he said. He was right.

In his 1963 letter from a Birmingham jail Dr. King wrote, “Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” He was right. He was right then and he is right now.

When we talk about justice, we are talking about freedom. Each is an appendage to the inalienable right of every human being to be who there are safely in the world around them.

And so it is with an allegiance to freedom and justice for all, along with an unflinching awareness that we are all threads in a single garment of destiny, that I try with all my might and heart to apply my voice to the fight for the right of all people to be who they are safely in the world around them. Safely doesn’t just mean physical, moral and spiritual safety. Safely also means social and cultural safety. To achieve these, equality is required. To achieve true equality, freedom is required. To achieve freedom, a seat at the table of social, political and cultural discourse is required.

For 13 years now I have worked primarily with people who have survived brain injuries. I have worked in both long term and community based settings. There have been times where I have found myself in a position of having to confront patterns of behavior and patterns of decision making that, intentional or not, deny survivors their right to have an equal say in the management of their own lives.

Over the years I’ve seen malicious patterns of oppression. I’ve seen the poison of dishonesty and the insidious tool of threat used as manipulation tactics. These threats are often linked to the person’s ability to keep the services needed to retain their level of independence in the community. Cruel? Absolutely. Illegal? Should be.

Dr. King said, “We know through painful experience that freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed.”

I can tell you from personal experience that being one of the voices that demands freedom can take its toll. It can be hard and grueling and painful to endure. But I don’t mind. Yes, I get scared at times. Yes, I am at times deeply worried I will lose everything. But I will not retreat into silence when I am, in some instances, attacked on a very personal level by the forces of injustice.

Here’s the thing. I would be more scared were I to retreat into silence and tuck myself away in some corner of the world and there sit idly by as the forces of injustice had their way. Such a retreat would be tantamount to my enlisting in the forces of injustice. And that, I can tell you, would take a toll on me that I am not prepared to endure.

A WONDERFUL HEUMANN BEING

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The only thing small about Judith E. Heumann is her physical stature. Listening to her speak at the Westchester Independent Living Center’s 1st Interdisciplinary Conference entitled “Uniting Systems – Empowering Lives” Friday was to experience a powerful, patient and thoughtful lesson on my country’s disability rights movement.

According to Independence Today, a publication of the Independent Living Center of the Hudson Valley, “Heumann served eight years in the Clinton administration as assistant secretary for the Department of Education, was a leader of the well-known 27-day sit-in in 1977 that led to the enforcement of access to federally funded buildings and transportation” and the list of her accomplishments goes on and on.

There is so much to this person, this woman’s message. In her speech she talked about a phenomenon all to common to those of us who live with a disability, work with people with disabilities or have a loved one with a disability; the way the world talks to you the day before your disability arrives and the way the world talks to you the day after is deeply disturbing. As a man who lives with a disability and who works with people who have sustained a disability through brain injuries, one of the most insidious realities I face daily is witnessing adults with disabilities being treated as if they are children, as if they are stupid or absent opinion or, worst of all, as if they are void of any value and rights. Some times I think those who inflict this treatment on others ought to be educated without judgment first. Then, if knowledge doesn’t do the trick and their demeaning behavior continues, which to my mind translates into knowing willful bigotry, they should be sentenced to spending a few days of their life in a wheelchair.

I cannot praise the Westchester Independent Living Center headed up by Joe Bravo and all who work there enough. What an extraordinary conference. And at the conference was Mel Tanzman, another extraordinary leader in the disability right’s movement, and Ralph W. Shields, and Nadine Bravo and on and on and on.

The fact that the names you’ve just “heard” are not household names is solid testimony to the distance we as a people need to travel when it comes to equal rights for people with disabilities. Actually, the real disability rests in the hearts and minds of those who dehumanize those labeled as disabled. For the latter, it is only a label, for the former, it is a definition.