Monthly Archives: September 2010

Remembering My Brother

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At five-foot-ten he was taller than me with thick wavy black hair and beautiful blue eyes. He would give me grief if I didn’t right away tell you  he was a guitar player, and a good one. It’s hard to remember him without his guitar. I had two arms, Bobby had two arms and a guitar. He loved Clapton and Hendrix and Duane Allman. Heartbroken after Duane Allman was killed in a motorcycle accident on October 19, 1971, Bobby was even more heartbroken when he gave away tickets to an upcoming Allman Brothers Concert only to learn, after the concert mind you, that Eric Clapton had taken Duane Allman’s place.

Bobby was a year younger than me. Girls often liked me until they met Bobby with his blue eyes and sweet gentle face. Once a girl named Jody liked me then, of course, fell for Bobby. One time we slept over Jody’s house. I was 14, Bobby 13. The next morning I went down to the kitchen where Jody’s mother was cooking up breakfast. My brother was upstairs sleeping. “Can I ask you something?”

“Sure,” Jody’s mother said.

“How come Jody likes Bobby now and not me?”

“Well, Peter. You have a strong face, strong build. Bobby has a soft young face and he’s slender. I suspect Jody feels somewhat motherly towards him, girls are like that sometimes. They like being motherly.”

“Thank you,” I said to Jody’s mother and rushed upstairs convinced I now had all the ammunition I would need to get Bobby to not like Jody anymore so she’d like me again. I shook him out of a deep sleep. “Hey, wake up, man.”

“Wha-?”

“You know why Jody likes you?”

“I’m sleeping, man”

“Bobby, this is important. You know why she likes you?”

“Why?”

“You’re not gonna like it.”

Now he is mildly interested. “Why?”

“She wants to be your mother!” There, I’d said it. Now he knew the worst.

“What?”

“Your mother. She wants to be your mother. Where’s your pride? Ask her mother, man. I just did. She said Jody feels motherly towards you.”

“That’s okay with me.”

“Whattaya mean, that’s okay?!”

“She’s so pretty she can be my mother and grandmother for all I care.” Bobby smiled, winked at me, and went back to sleep.

I was protective over my brother. God help anyone who messed with him. I ever let him fight, jumping in and pummeling the hell out of anyone who dared threaten my brother. Bobby got so mad at me one time because I wouldn’t let him fight he punched me. I didn’t mind. I would’ve protected Bobby from anything or anyone in the world and then some. But I couldn’t protect him from himself. Not on October 4, 1977.

He was living in Kensett, Arkansas. His girlfriend had gone next door to play cards with the neighbors. He’d been drinking. Bobby locked all the doors to the house, sat down in a large chair in the living room, picked up a 22 rifle, placed it against the side of his head and fired, killing himself instantly. He was 23 years old. I was 24.

There are no words.

Hard to believe he’ll be gone 33 years this October 4th.

I miss him terribly.

Love you, Bobby.

 

Days in Brain Injury Health Care – Part I

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“Remember,” a close friend of mine said when I’d just begun to work in the brain injury health care field around 1995, “This field attracts some of the most caring people and some of the most emotionally dysfunctional people you’ve ever met.”

My friend was right.  Some of the people I’ve met in the health care field over the years are the most selfless, hard working, compassionate, empowering and healing human beings walking the face of the earth. Others are some of the most controlling, selfish, heartless, greedy, demeaning, dishonest, self-absorbed and despicable people imaginable.

There are, however, some common pre-conceived notions that are not accurate. All people who work for regulatory agencies like the department of health are not heartless bureaucrats. I’ve met some genuinely caring people in the bureaucracy. Conversely, one cannot assume all people who work for advocacy organizations or health care providers are caring and compassionate.

It took me quite some  time, even with my friend’s rather prescient warning, to realize all this. I used to think that somewhere inside all people lurked a genuine sense of caring for others. Wrong. There are people who can come face to face with making a choice that will deny someone their right to heal, their right to the best possible treatment, not to mention their right to equal rights, and make the choice anyway. Choices like these can stem from several things, or a combination of several things: greed, the need to control,  hate, anger, and or the inability to realize the person or persons you are wounding are, just like you, full fledged human beings.

More than once over the years, twice actually, I’ve been taken in by charismatic business owners who convinced me they were oh-so-dedicated to helping people living with brain injuries gain or regain their independence. One such owner hired me and a friend of mine, Jimmy, we later realized, because I have  a brain injury and Jimmy has a spinal cord injury. We were, as Jimmy once put it, the token gimps, though neither of us realized it at the time.

I will not name this owner because I genuinely loved this troubled man and because he never did anything purposefully to wound my personal life, nor did he spread lies about me and seek to damage me personally and professionally.  Something that cannot be said for John Mccooey, owner of the Belvedere Brain Injury Program. 

Mccooey pretty much used me to help save a floundering program he’d inherited. We worked closely for years. I’d mistakenly thought we were friends. When Belvedere opened a substance abuse program and the program’s leadership began treating participants like dirt, I began advocating for the participants.  Not only were my warnings about the way participants were being treated dismissed, I would later learn Mccooey was calling DOH officials and others saying, Something’s wrong with Peter, something’s wrong with Peter, laying the groundwork for pushing me out because having an advocate around was no longer convenient for him. Never mind the way program participants were being treated.

Over the years I have met some amazing people too.

Judy Sandman, recently retired from the Brain Injury Association of New York State, was and is as committed to people with brain injuries as any human being on God’s green earth. Bruce Darling, the head of the Center for Disability Rights, is one of the most dazzlingly committed to equal rights human beings I’ve ever had the privilege to meet. Judy Purdell, a social worker who is a counselor for people living with brain injuries is the very essence of compassion, honesty and integrity. The same can be said for Dr. Maria Lifrak and her staff at Comprehensive Neuropsychological Services. Dr. Lifrak is  a neuropsychologist who, along with her staff and a former employee of hers, Kristen Weller, taught me more about the role my brain injury plays in my life than all others combined. 

Well, enough for now, there will be more to come about my days in health care.

The Hottest Places in Hell

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On the one hand you have New York State Department of Health officials who will proclaim their commitment to making sure brain injury survivors in New York receive the best services possible under the TBI Medicaid Waiver. But the DOH signs a contract with Southern Tier Independence Center in Binghamton knowing full well STIC will hand the work to a clinical predator like Tim Feeney who prances about proclaiming he has college degrees he doesn’t have.

Then you have STIC, the Southern Tier Independence Center and their executive director Maria Dibble who would no doubt proclaim their loyalty to people with disabilities, yet Dibble and STIC have no problem giving work to a man they know lies about his credentials to the very people STIC and Dibble claim to care about.

At least the DOH has enough respect for a consumer led advocacy coalition to sit down with us and while some of their position related to the Feeney debacle is, in a word, indefensible, there are other things the DOH is doing that are admirable. Not so STIC and Dibble and sure as hell not so Feeney, all of whom simply ignore requests for answers for the consumer led advocacy coalition.

I’m in the early strides of penning a book about my experience as a brain injury survivor as well as my experience working in the field. Feeney and his enablers are certainly great examples of yet another reality dramatically wrong with the health care system. Just as troubling are those who go along with the ruse. NYSARC again hiring Feeney for a presentation knowing damn well he is a fake.

Soon a round of interviews will begin, with elected officials, law enforcement officials, DOH officials and many more. Meanwhile, it appears time to do all I can to bring the media in on this. In addition to inflicting Feeney and his enablers on men and women (and for Feeney, children too) with disabilities, there is more than a quarter million in state dollars being paid to the contract that pays Feeney and his crew.

For any advocacy group to not take a public stand against this means, by default, they are standing for it.

As Dante Alighieri said, “The hottest places in hell are reserved for those who in times of great moral crises maintain their neutrality.”

 

NYSARC & Feeney: the Corruption Continues

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One has to wonder what St. Lawrence NYSARC is thinking about by inviting Tim Feeney to present at an upcoming conference on brain injury. St. Lawrence NYSARC his he is not a PhD yet accepting the fact he represents himself as such.  The brochure lists Feeney as “ the Clinical Director of the New York Neurobehavioral Resource Project at STIC (Sothern Tier Independence Center in Binghamton). The clinical corruption with a hefty incestuous streak becomes clearer by the day.

Feeney, as you may recall, was issued  a bogus “masters” degree as well as a bogus “PhD” by the now defunct  diploma mill, Greenwich University.

Consider this.

  • Emails to Maria Dibble, the executive director of STIC from the Kahrmann Advocacy Coalition, founded by and run by brain injury survivors and their families, the very people STIC and Feeney claim to care about, have simply been ignored.
  • Despite being fully informed about the fact Feeney does not have a valid PhD or a valid Masters degree, STIC appears to be perfectly comfortable with his misrepresenting himself, which does not say much for either’s opinion of survivors of brain injury and their loved ones, nor does it say much for their respect for the honest health care providers who are battling under great financial strain to provide the best services.
  • As for the hefty incestuous streak, add up the following facts:
    • Pat Gumson, the former DOH employee who, along with Bruce Rosen, oversaw the state’s TBI waiver, used to be a STIC employee.
    • This will be the second time STIC has, for all intents and purposes, acted as a front for Feeney.
    • The State Education Department oversees Independent Living Centers in the state. Who is the State Ed’s manager of the state’s ILCs, Robert Gumson, Pat Gumson’s husband.

What you can be sure of is the days of this corruption are numbered. I am not at liberty, yet, to disclose why this is so, but it is.  In the meantime, the tragedy is that a clinical predator like Feeney is enabled by the likes of STIC and others and this simply underscores what many of us who live with disabilities deal with on an all too regular basis; the message that somehow we are less valuable than others.

The Trust Given Me

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I recently told New York State Department of Health Officials they can trust me, and they can. I told them what I have told others.  I will stand against anyone or anything that denies people their equal rights, and I will stand with anyone or anything that supports equal rights – for all people. It’s that simple.

In early 2008 I was pretty much tossed out of the Belvedere Brain Injury Program because I would not remain silent when I saw program participants denied their equal rights by the leadership of Belvedere’s substance abuse program. The owner of the program, John Mccooey said, in front of witnesses I might add, that while my financial relationship would not change, my relationship with Belvedere would change, meaning I had to leave. Mccooey continued to pay me for awhile short time later he said I’d told someone that he was paying me for my silence which is about as absurd as it gets given the reason I was tossed from the program in the first place was my very lack of silence. So, he used a lie as an excuse to stop paying me.

While I hear mixed reviews of Belvedere today, it is worth noting that Belvedere is the only brain injury waiver provider in the state that will not allow the Kahrmann Advocacy Coalition, founded by brain injury survivors and their loved ones, to meet with program participants. As the saying goes, actions speak louder than words.

Anyway, there I was, from weekly paycheck to no income at all. I’d been an independent contractor so unemployment was not an option. Given that I had not been working a full-time schedule because of my brain injury, I sought public assistance, received a rush of help from friends, began monthly trips to a food pantry, and went back on disability and my state’s TBI Waiver which, while it has its problems, is a blessing to nearly 3,000 people.

Back then some of the people who love me said things like, We know you care and we know you don’t like it when people are being denied their rights, but you’ve got to keep your mouth shut sometimes so you can keep your job, a roof over your head.  I can’t. Not then. Not now. Not ever. Who am I to put my income over another person’s right to their equality? I look at the sacrifices made by others in the battle for civil rights and when all is said and done, losing a job or a home is not that high on the trauma scale, not when others have paid for their work with their lives.

Not long after the Belvedere blow, I met up with my friend Eric Mitchell. Eric and I worked together at Belvedere and had become close friends. I told him what happened with Belvedere and said, “At least I wasn’t assassinated.” Eric paused, said, “In a way you were,” and gave me a hug.

There are quite a few brain injury survivors along with their loved ones who trust me to stay loyal to them, to not fold when their equal rights are threatened, no matter the cost.  I will not betray their trust. Their trust is one of life’s greatest gifts to me; the fact the above referenced coalition is now the largest survivor-led coalition in the state is testimony to this gift.

I was recently asked if, as a human rights advocate, I ever get scared. Yes,  I do. All the time. But I agree with Nelson Mandela’s take on courage. He said, “I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”

So yes, the DOH and others can trust me. They can trust that I will always stand up for equal rights and stand against any force that seeks to deny equal rights.