Where the Facts Lead

Advocacy is not easy.

As a human rights advocate you see the ability of human beings to dehumanize other human beings, often for financial game and, almost as often, so those doing the dehumanizing can feel powerful, though it takes no power to dehumanize someone, just an ability to be heartless. You see lives lost, figuratively and literally.

I hold fast to something Dr. Martin Luther King Jr. once said. “"The ultimate measure of a man  is not where he stands in moments of comfort and convenience, but where he stands at a time of challenge and controversy. The true neighbor will risk his position and even his life for the welfare of others." Is is easy to hold fast in times of challenge and controversy?  No, of course not. It can be brutally hard, scary, painful, and, at times, deeply lonely. But I can live with all that. What I can’t live with, what is far more painful, is the task of staying silent when bigotry and discrimination is at work.

Perhaps one of the most grueling things for me is when I see other advocates set aside their advocacy when it is a friend or family member or business colleague or revenue source doing the dehumanizing. Staying silent, or turning a blind eye when people are being denied their rights, or are being misled, lied to, hurt, is not in my repertoire. In my more selfish moments, I wish it was, but it is not. It is painful when people you know stay silent when someone they happen to know is doing the dehumanizing, the discriminating. I’ve had some who I’ve admired and genuinely liked lash out at me when my advocacy efforts bump into members of their inner circle.

I can’t help where the facts lead.

Once, many years ago, I worked for a long-term healthcare facility in the Bronx. The company held a Christmas Party in a restaurant’s basement level banquet hall. To get to the hall you had to walk down a very long steep flight of stairs. There were no bathrooms on the same floor as the hall and, there was no elevator. This, of course, posed a problem for a good friend of mine who, like me, worked for this healthcare company and was a wheelchair user. Jim Cesario is about as dazzlingly good with a wheelchair as one can get, but still, rolling down a steep flight of stairs and then up again when you had to leave or, say, use the bathroom, would be rather difficult.

Anyway, once I’d learned of the set-up I announced I would not attend the party. Jim along with his wife and daughters were not going, for obvious reasons, and several staff members decided not to go in protest because of the sites inaccessibility. Marked as the ring leader, I was called into the administrator’s office where a few things were explained to me. Yes, they knew this was not fair to Mr. Cesario but after all he was the only wheelchair user on staff and they’d gotten a really good discount price for the hall. And secondly, didn’t I understand that my refusal to go was a blatant sign of disrespect for the company owner and the company as a whole? I said it didn’t make a difference if it was one wheelchair user or dozens, and as far as disrespecting the owner was concerned, perhaps the owner and all members of upper management ought to consider how they’d feel if they had to be carried up and down stairs – in front of their spouse, children and co-workers no less! – every time they needed to use the bathroom.

Needless to say, the party was held in the basement hall. I didn’t go. What’s worth noting is the party was thrown by a healthcare company that would tell the world it fully supported equal rights for wheelchair users, unless of course there was a discount to be had.

And then, in recent history, I uncover the fact that Tim Feeney was lying when he told – and continues to tell -  the world that he is Dr. Feeney or Tim Feeney PhD, when the only valid college degree he has is a bachelors. For fifteen years he was arguably the most powerful voice in the implementation of New York State’s Traumatic Brain Injury Waiver, a form of Medicaid reimbursement for survivors of brain injury living in the community. During that time Feeney would dictate policy and procedures to companies providing waiver services, inflict admission holds, direct that some survivors  be removed from the waiver or stop others from getting on the waiver.

Now you would think that when the truth was revealed, the advocacy community, not to mention the survivors, their families and providers would be glad. Most were. But some attacked me for bringing the truth into the light. Why? In some cases it was because Feeney was linked to people they liked and were friends with, namely former New York DOH employee Patricia Green Gumson and current DOH employee Bruce Rosen.  Both oversaw the waiver for many years and did many truly good things during that time. However, investigation of Feeney revealed there was ample reason to believe both both Gumson and Rosen knew about Feeney’s misrepresentation and covered for him.

I can’t help where the facts lead.

And now it again appears that Feeney may be given the same powerful position in the waiver even though the DOH and STIC (Southern Tier Independence Center) in Binghamton, the company likely to be awarded the contract with DOH that may lead to Feeney’s return, are fully aware of Feeney’s dishonesty. Needless to say I’ve already had people reach out to me telling me that STIC is a highly reputable center. They are right. It is. But even the best of us, myself included, make mistakes in judgment sometimes. Do we deserve to be villainized? No. Do we deserve to be held accountable? Yes.

Which is exactly what I am doing.

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Living With A Brain Injury – April 2010

No brain injury is the same no matter its cause and a brain injury is never a static thing. It’s role in your life changes and shifts for a range of reasons. It is one experience when you are rested and, in all likelihood, another experience when you are tired. In a state of fatigue the brain is not as able to compensate for the damage. Aging too impacts the role the injury plays.

As one who lives with a brain injury my responsibility  is to keep an eye on its role in my life and do my best to manage it. My injury is a result of being held up and shot in the head in 1984. There is one immoveable truth that stands tall in the face of this or any disability or disease for that matter. They d0 not define who we are unless we allow them too and the most certainly do not define our value in life.

My closest friend, Michael Sulsona, lost his legs in Vietnam and another good friend of mine, Jim Cesario, suffered a spinal cord injury. Both men use wheelchairs. Both also deal with people talking to them in very loud voices because for some odd reason people think if you use a wheelchair you’ve suffered hearing loss. Go figure. Both men, by the way, stand way taller in life than most people I know.

No matter the wounds of life,  you are not gone.

It seems to me one of the keys to improving quality of life is acceptance, your capacity to accept the reality that is you. This requires honesty. For me, I’ve accepted I am an alcoholic (I will be eight years sober this July 12) and I have accepted that a brain injury and PTSD are present in my life. By accepting the realities you face for what they are, you stay right sized and by keeping them right sized you do not lose you in the process.  That to me is the greatest discovery of all. No matter the wounds of life,  you are not gone.

There are still days my fear and anxiety stop me from getting out of the house, or drive me out of my backyard and back into the house, but even so, I am more than okay. On those days I am by no means a defeated being. I am surrounded by books and the house is filled with music and, of course, the bird feeders are filled with wondrous visitors.

Your most powerful weapon

No matter what you are facing in life, you are not gone. I can tell you too that honesty, which is the core fuel for one’s capacity to accept, is your most powerful weapon.

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