Next Book: Brain Injury

Since I suffered my brain injury in 1984 when I was shot and since I began working in the field of brain injury in 1995 I’ve witnessed the presence of the heartfelt commitment of the extraordinary among us as well as the presence of the greedy, self-serving, narcissistic and dictatorial.  I’ve written pages of notes about my experience and with the end of the memoir now in site, one of my next writing projects will be a tell-the-truth book about my experience in the world of brain injury.

Some will be pleased, some won’t. Some will be surprised, some won’t.  Some will be happy, some will be angry. Some will agree, some will disagree. How do I feel about all this? I don’t much care. My responsibility is to be honest and tell the truth to the best of my ability.

One of the things I will write about is what one might call the non-profit myth. The notion that if an agency, company or advocacy group is non-profit it means it really cares. Not so. To be sure, there indeed are terrific non-profits  like the Rochester-based CDR (Center for Disability Rights) headed up by Bruce Darling. CDR is all one could possibly hope for in a non-profit as both a service provider and  advocacy organization.

However, I’ve seen individuals in leadership positions in non-profit settings that are all about themselves. They  have arrived at the rather stupefying notion that the world revolves around them. They lay claim to the advocacy mantle when in truth they offer only lip service and consider their environments to be little more than petri dishes in which they can grow the bacteria necessary to further their self-aggrandizement. As a result, when it comes time to leap into the advocacy trenches and have at it, they are nowhere to be seen. Brain injury survivors and their loved ones along with quite a few healthcare providers know who stepped up to the plate and who didn’t when the New York State Department of Health decided to bring Timothy J. Feeney of bogus-college-degrees fame back into the fold. Brain injury survivors and their loved ones along with quite a few healthcare providers know who spoke up and who remained silent when the state’s DOH began to tell waiver providers they cannot support brain injury survivors at Medicaid Fair Hearings.

No organization of any kind, for-profit or non-profit, ought to be about or solely reliant on only one person or a handful of people.

I will also write about the for-profit myth, the myth that says anything that is for-profit is greed based. While this is often true, there are times it’s not. Until recently, Cortland, New York’s CCRP (Cortland Community Re-Entry Program), a for-profit that operated under the oftentimes problematic umbrella of Healthcare Associates, was one of the best if not the best Traumatic Brain Injury Waiver program in the entire state. The program crumbled when, after the untimely and tragic death of the head of Healthcare Associates, Anthony Salerno,  the running of the organization fell into disarray and CCRP fell apart, but not because it was a for-profit.

I may well write more about this upcoming writing project, but this is enough for now. Stay tuned.

 

Reflections of an Advocate, September 17, 2010

Bigotry is inhumane.

For as long as far back as memory allows me I have always found it troubling when people were being treated inhumanely. This may explain why two of my childhood heroes were Dr. Martin Luther King Jr. and Geronimo. They still are heroes of mine. The hero list for me has grown since then. It now includes Elie Wiesel, Nelson Mandela, Gandhi, Frederick Douglass, Coretta Scott King, Dorothy Height, Father Mychal Judge and others.

Anyway, today’s reflections revolve around those moments all advocates face when you simply can’t believe the challenge you are facing is even there in the first place. For example, it boggles my mind that there is even a question about making sure polling sites are accessible to all. There is even a cluster of numbnuts who call themselves, I swear to God, the Lever Lovers. They seem to think  voting machines with levers are the only way to go, too damned bad if you are paralyzed. Boggles the mind, at least it does mine.

And then there were two moments this morning that boggled my mind in similar fashion.

First, I left a voice mail for Timothy J. Feeney asking why his company’s voice mail (call them yourself) has, for some time now, said they are under contract with the Department of Health whey they’re not and did he intend to continue to misrepresent his credentials to adults and children with disabilities.

Second, an email was sent to Maria Dibble, executive director of STIC (Southern Tier Independence Center) in Binghamton, NY, again asking her to explain why STIC, which is likely to be under contract with the New York State Department of Health for the Neurobehavioral Resource Project, plans to give the work to someone like Feeney.

There was a moment when I sat back, took a sip of my coffee, and shook my head. It struck me as somewhat unbelievable that any of us have to deal with someone prancing around pretending to have degrees they don’t have much less ask questions of a provider like STIC, that apart from this situation has a good reputation, why they plan to give work to the prancing ninny.

But, when I find myself shaking my head over perplexing challenges like these, I remind myself of the days people were made to ride in the back of the bus or drink and eat in specific locations because of the color of their skin. That was pretty unbelievable too.

So, the bad news? Bigotry marches on. Only bigotry would allow someone to think it is okay to be or to hire someone who is misleading an entire population of people.  The good news? Advocacy, including this advocate, marches on as well. I like my role models: King, Geronimo, Height, Mandela, Gandhi, Douglass, Wiesel.  Who might the role models for the bigots be? Maybe the likes of Bull Connor, Lester Maddox, David Duke, George Lincoln Rockwell, Adolf Hitler.

I like my role models better.