Monthly Archives: February 2010

Notes From an Advocate: Into the Light

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The best way to get rid of the dehumanization of people with disabilities is to expose it as clearly and graphically as possible.

I have told more than one in the field of human rights, I will tell the truth for you, I will not lie for you. There are a few who made the mistake of thinking this was lip service on my part. Not.

As the Kahrmann Consumer Advocacy Coalition grows its membership and hones its purpose, I can tell you that my input will include a consistent push to bring those who deny people their equal rights into the glare of the public eye.

If you deny people their equal rights, you deny them their freedom.

Our current focus is on the survivors of brain injury living in the community who are receiving services in New York from providers across the state. Many of the providers are class acts and do not deserve to have their reputations stained by those providers who are anything but class acts.

Among other things, this latter group of providers engage in what can accurately be called, community-based warehousing. They should be and will be exposed. Although the survivors are living in the community, their lives and what is welcome or not welcome in their lives is controlled by the providers.

One thing I know is this; providers who prevent the coalition from telling the survivors in their programs about the coalition will be exposed.  The question is how best to do this.

Not only does the behavior of the poisonous deny people their civil rights, it denies people their freedom. There is no excuse; certainly not even greed, no doubt the driving force behind much of this.

And so my thought, my mission, is to bring the bigotry into the light.  Fungus never does well when exposed to sunshine.

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The Orphans Among Us

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When as children we are left nowhere

Let our hearts be

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When as children we are left in absence

Let our hearts be

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When as children we are left no family

Let our hearts be

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When as children we are left all alone

Let our hearts be

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Spare our hearts… it is the least you can do

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Thank you,  Audrey Tautou

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Sobriety First

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It took getting arrested in 2001 for me to turn my life around. To be more accurate, it took getting arrested and watching my “world” disintegrate to lead me into the rooms of a 12-step program and turn my life around. While the arrest itself was horrible and the case was thrown out of court 19 days later and the motivation behind the charges was likely designed to shut my advocate mouth up, none of it would have happened had I not been drinking, and so, I am responsible.

Just a day or so after the case had been thrown out of court I was talking to a NYC Firefighter who had 25 years of sobriety under his belt. “They set me up,” I whined. “They had this fox nurse buddy up to me and we went out drinking a few times and next thing I know, I’m getting accused of all this shit. It’s bullshit.”  I was actually telling the truth, but only because they truth happened to work for me, or so I was foolish enough to think.

He looked at me, nodded, smiled, and said, “Okay. Let’s say I believe you. But whether they set you up or not is not the point. There’s always people like that in the world. I have one question for you and one question only. It’s a yes or no answer. Was there anything about Peter Kahrmann that contributed to the environment that allowed it to happen? Yes or no.”

“Yes,” I said.

“Good. That’s what you need to focus on. Not all the bullshit that’s around you, but you, take responsibility for you. Get sober.”

I will be sober eight years this July 12.  I wouldn’t trade my sobriety in for anything else.

Believe me, if I wasn’t sober, I never would have written this.

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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.

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