Author Archives: Peter Sanford Kahrmann

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About Peter Sanford Kahrmann

Writer, disability rights advocate, civil rights advocate.

Here Comes the Sun

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I heard a woman say, “The second my husband got his disability, he became a cottage industry.” Her observation was accurate when applied to her husband, and it is accurate when it is applied to thousands of people with disabilities across this country.

I say nothing new or profound when I point out that some companies that offer services to people with disabilities, people with brain injuries being the field I’m most familiar with, do their level best to keep people in their programs and enduring as many hours of services as possible in so the company profit. Is this true for all providers? Absolutely not. But it is true for some. And while providers who give their hearts and souls to help someone grow their independence and, in doing so, shed  services, deserve accolades and deserve the “headlines” so to speak, the ones who don’t, the ones who treat those of us with disabilities as if we are nothing more than profit makers, they deserve to be brought into the open. In a word, expose

Dehumanizing corruption like this thrives on secrecy. It hides behind a web of lies, overtures of feigned compassion spun with enormous skill, and, sometimes, no skill at all. Dehumanizing corruption like this is also bigotry. It’s prejudice. It’s as vile and hateful and full-throated as the racism that drove Selma Alabama racist Bull Connor in the 1960s to unleash police attack dogs and fire hoses and, in one instance, a small tank, on protesters, including women and children.

The denial of equal rights cannot continue. Bigotry of any kind has no seat at the table in a land pledged to freedom. If non-violent direct action is what it will take, then so be it. Too many good Americans have fought and given their lives so all of us can be free, not just a select, well-heeled few.

President Obama was right recently when said, “Sunshine is the best disinfectant.”

And so, with a smile and a nod the Beatles, let me just say, Here comes the sun.

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I’m Glad Drew Was There

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If I had a son I’d be damned proud if he were someone like Drew. Full name, Andrew Muscarella. He is as decent, kind, honest, smart and patient a young man as God ever created. He is also a good witness to have when life throws you an unexpected curve.

It is 2004 and I am half way or so through a 1,000 mile bicycle ride around New York State to raise public awareness of brain injury when I find myself with an evening off Syracuse. Syracuse is Drew’s home town. He drove the support car for the ride that day and that evening I get a hankering to get my hands on a Mont Blanc fountain pen. Mount Blanc pens are reputed to be some of the best in the world, though I’ve not had much luck with the two I’ve had in life. They both leaked. They are also, at least for me and most, exorbitantly expensive. But when you are actually writing with them, they are truly magnificent.

Anyway, while I know I don’t have the money to actually buy one, Drew and I figure, what the hell, let’s go look at them. Hard, if not impossible to find in stationary stores, you’re more likely to find them in a jewelry store, which is exactly where we found them. In a jewelry store whose name, thankfully, escapes me.

They are in a glass case and look beautiful, especially this sleek black fountain pen. A young lady, a salesperson, glowing with authority and know how comes over to us.

“Can I help you"?” she asks sniffily.

“I was just looking at the Mont Blanc fountain pen,” I reply.

“Would you like to see it?”

I would.

She removes the pen from the case and hands it to me. “Best in the world, you know.”

“So they say.”

Drew, glowing with patience, says, “Nice pen.”

I say, “I had one of these but it leaked.”

She says, chin lifted a bit, as if she is donning patience to deal with the less informed, “They’re supposed to.”

Drew and I together, “Sorry?”

“They’re supposed to.”

I’m thinking I must be missing something, not understanding something, maybe a paragraph was spoken and I’d drifted off and now I’d returned and as a result of my drifting, didn’t understand what she meant when she said, “They’re supposed to.”

I say, “You’re telling us that a Mont Blanc pen is supposed to leak?”

“The fountain pens are, not the ball point or roller ball, but the fountain pens, yes. They have very special ink.”

I look at Drew, who I actually do love like a son, and his expression pleads with me not to do anything, well, outlandish.

I continue. “So let me get this straight. You say you’re selling the best pens in the world and that the fountain pens, the Mont Blanc fountain pens, are supposed to leak.”

“Yes,” she says, apparently happy that I’ve finally gotten my facts straight.

Drew says, “Maybe we ought to look somewhere else for a pen.”

I say to Ms. Authority Know How, “Sell a lot of them, do you?’

She says, “Not many.”

We leave. I’m glad Drew was there because I wouldn’t even believe me without a witness.

________________________

 

I Miss My Freedom

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I am declaring war on my agoraphobia.

It controls me so powerfully I am ashamed to talk about it. For years, perhaps until just recently, I wondered if it was even real. It is. I can barely get out of the house.

Every night when I go to bed I promise myself I will go outside for a walk the next day. I almost never do. Taking the dogs out to the pen and going out to feed and water them are battles enough, staying out longer than the time it takes to complete those tasks feels like climbing Everest without oxygen. On the days I do get out, I go to the YMCA, library, meeting, speech, class I’m teaching or group I’m facilitating. With terribly rare exceptions, I never go outside just to be outside.

When I was a boy growing up my favorite refuge in the world was the woods. Walking in the woods, by this beautiful stream in Pearl River, New York was like living in the most wonderful fairy take imaginable.

I am surrounded by woods and streams and lakes where I live, all beautiful, breathtaking even, and agoraphobia, my enemy, drives a wedge between me and all this beauty.

I am declare war on this enemy, or, perhaps more accurately, renewing my declaration of war on this.

I miss the world outside my window. I miss the woods. I miss my freedom. I want it back.

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On Suicide

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I cannot hear or read about suicide without internally flinching. It is sad that life can be so painful, ending it seems the only way out.

High levels of suicides among veterans, the recently reported suicide of Alexander McQueen, the 40—year-old fashion designer, are reminders that  life happens to us whether we like it or not and sometimes the pain we experience stops us from seeing the hope that is there. The savagery of some marketing and media campaigns that wrongfully say wealth and fame is the way to happiness has misled many of us.

The phrase, the best things in life are free, the title of  a  song written by B.G. DeSylva, Lew Brown, and Ray Henderson for the 1927 musical "Good News", still holds true. My heart sings with joy at the call of a Red Tail Hawk, the feather touch of clouds on mountain range, or waking up in the morning. That’s right, waking up in the morning! What a gift! Another day!

Like many others, I’ve been touched by suicide. My birth-father committed suicide with a handgun before I got the chance to meet him; at age 23 my brother put a 22 caliber rifle to his head and pulled the trigger; at age 68, my mother, Virginia, surrounded herself with family pictures and with a mixture of drugs and alcohol, ended her life. Three of my childhood friends’ mothers committed suicide. While I will not name them, I can tell you I still love my three friends and I still love their mothers.

I would be disingenuous if I told you the idea of suicide never crossed my mind. When I was homeless many years ago the option briefly came to the surface. I remember walking on MacDonald Avenue in Brooklyn one brutal bone-chilling cold night with, once again, nowhere to go. I stopped walking and out loud said, “I give up.” I just stood there and again said, “I give up.” I wondered what exactly giving up meant? I mean when you are standing on a cold street with nowhere to go and you say I give up there are not a lot of options. Die, or keep walking. I kept walking.

Here are some things I can, in gentle tones, tell you:

  • Feeling hopeless does not mean there is no hope, it means you are having a hard time finding it; but it’s there.
  • Feeling like you have no options does not mean you have no options. They are there, and you have a right to know about them.
  • Feeling worthless does not mean you are worthless, it means you are having a hard time experiencing your worth. It’s there. Promise.

In other words, I beg of you, don’t give up.

Not giving up has given me many gifts in life. Including the gift of being able to write these words to you.

_______________________

Equal Rights Needs No Competition

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Groups promoting equal rights should never be in competition with each other. The fight for equal rights needs and deserves as many honest voices as it can get.

I am most directly involved with promoting the equal rights of people with brain injuries, with their right to live in the most integrated setting.

Fortunately in my state there are some solid voices involved in this fight. The Brain Injury Association of New York State is the leading advocacy organization in the state;  the Providers Alliance is comprised of companies and individuals who provide services so some who live with brain injuries are able to live in the community: the Kahrmann Consumer Advocacy Coalition is a statewide coalition founded by and run by survivors and their families;  the Brain Injury Coalition of Central New York is comprised of an extraordinary group of survivors, family members and health care professionals; the National Brain Injury Foundation in Utica brings hope and empowerment to survivors and their families; the Traumatic Brain Injury Services Coordinating Council (TBISCC) was formed by an act of the New York State Legislature to advise the Department of Health regarding service needs of persons who have sustained a traumatic brain injury, and the New York State Department of Health and the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities.

Given a recent productive meeting between the KCAC and Mark Kissinger, deputy commissioner for the New York Department of Health and his staff,  along with my knowledge and experience of those in all of the aforementioned groups, New York State is blessed to have them all and very much needs them all. There is no such thing as too many groups working for the right of all survivors of brain injury to live as independently as possible in the most integrating setting as possible.

The KCAC will be meeting with the Mr. Kissinger and his staff again in the next few months and has already reached out to the Brain Injury Association of NY and the Providers Alliance for a meeting. Moreover, we are already talking with both the NBIF and the BIC of Central New York. What is true about those in all the groups mentioned in this missive – including the DOH for those who may doubt it – is everyone’s heart certainly appears to be in the right place.

I hope and pray all of us are wedded to my favorite definition of humility – humility isn’t thinking less of yourself, it is thinking less about yourself  – and  join together, work together, and urge each other on. If any of us get caught up in the destructive winds of competition and ego, we hinder the very thing we are all really about – equal rights.

This is not the life path I was on when I was shot in the head 1984. I was writing, driving a New York City cab, and pondering a career as a paramedic. But the squeeze of a teenage finger changed all that. And so here I am, connected to some wonderful people and some wonderful groups throughout this state.

And so we keep on moving, one day a time, humble and humbled up, which is at it should be. Life happens to us whether we like it or not. It does not go on forever, so let us all join together and work  heart and soul to make the world a better place for all people. And that includes each other.

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