When it comes to equal rights, it is personal

I can think of no better time than now, Martin Luther King Jr. Day, to say a few words to all, including those who, if they abide by the requirements of their respective roles, are bound to the notion that people with disabilities deserve equal rights meaning, they deserve their freedom. There can be no freedom without equal rights. My disability is a brain injury as a result of being held-up and shot in the head in 1984.

In my state  of New York the struggle for equal rights for people with disabilities (and seniors) often finds itself confronting those who are seeking to save money at the expense of those rights which includes the right to live as independently as possible. In some cases this means having access to the services they deserve to make this possible. The struggle is, at times, with some of those who loudly pronounce their support for those of us with disabilities, but, when the forces that seek to deny us our rights raise their heads, they fall silent.

Over the years I have made friends and lost friends because I hold people, companies, agencies, councils, committees, and governments accountable for their actions. There are some who think that I start out holding these folks accountable publicly. Not true. In many instances, and, in some cases, for significant periods of time, I have held the aforementioned accountable in conversations behind the scenes. But when that fails, the dysfunction and the glaring disloyalty to their professed cause must be brought into the light of day. There is no doubt I have angered some and there is no doubt some have taken my actions personally.

I don’t advocate for equal rights to make people angry and I don’t advocate for equal rights to wound someone personally. Has it ever occurred to anyone that having your equal rights denied might make you angry? Has it ever occurred to anyone that having your equal rights denied is personal? When you lose your equal rights, you lose your freedom. For some of us with disabilities, losing our freedom includes losing our freedom to remain in the community! Our freedom to choose where we live, what we eat, what we wear, when we sleep, when we get up, where we go during the day, what we hear, what we see…   This is no exaggeration. I wish it was, but it isn’t. Just imagine losing your freedom in any or all of the ways just mentioned and then ask yourself if it wouldn’t make you angry. Ask yourself if maybe just maybe you might take the loss of your freedom personally.

There are some groups in New York who truly do practice what they preach. The Center for Disability Rights  headed up by Bruce Darling, a man I genuinely love and respect, comes to mind. On the CDR homepage, Mr. Darling writes, “Some people say we are never satisfied. Others try to portray us as complainers. I feel we just call it as we see it.” Thank God they do.  And what is it they do? They hold everyone accountable and, at times,  they do so publically. After all, sunshine is the best disinfectant.

And then too there is the extraordinary group, ADAPT, whose battle cry is, accurately and not surprisingly, Free Our People!  And, in my state, we have NYSILC, the New York State Independent Living Council, along with some  Independent Living Centers across the state who are indeed remarkable. But we need more groups like this. The fledgling Kahrmann Advocacy Coalition has, in a very short time, taken the role as the largest grassroots advocacy group for people with brain injuries in the state. Why? Because it was a huge void that needed (and deserved) to be filled.

If all that’s been said here and other places about the need for public advocacy for equal rights has not swayed you, then perhaps the words of the man whose day this is might help. Perhaps his words might help those who remain silent when the rights of any people are being denied to change their ways and speak out.

Dr. Martin Luther King Jr. said:

  • “Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.”
  • "A right delayed is a right denied.”
  • “In the End, we will remember not the words of our enemies, but the silence of our friends.”
  • “Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”
  • “Our lives begin to end the day we become silent about things that matter.”
  • “The hottest place in Hell is reserved for those who remain neutral in times of great moral conflict.”

Let us also remember that the reason this day belongs to Dr. King, and therefore all of us, is because, like CDR, ADAPT, the NAACP and more, he called it the way he saw it, and he did so in a way we all heard, understood and believed.

We shall overcome.

     

Lip Service Advocates

Even at 57 a deep sadness staggers me when I find myself realizing that the claim some make to being advocates for people with brain injuries is only true when it  makes them look good, gets them attention, and or when they and only they are calling the shots. They are the lip-service advocates, advocates when being advocates is comfortable, risk free.

Real advocates in the world of disability, and I know quite a few, Bruce Darling who heads up the Rochester, New York-based Center for Disability Rights, comes to mind, will tell you advocacy can be scary, lonely, unsettling, heartbreaking, angering, and, at times, joyous. It is, they will tell you, anything but easy. You have to be willing to go into the dysfunction storm, not flee it the moment it appears.

It is, sadly, not unique that there are those who, needing to feel a sense of control in their life, gravitate to the world of disability because large swaths of society’s so-called support systems make those of us who live with a disability controllable. Want those services? Want that wheelchair? Want that assistive technology? Want to come to our conference? Want that subsidy? Be prepared to pay the piper which, in part, will require your willingness to sing our praises, even though we don’t deserve them.

Not a price I’m willing to pay.

 

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.

 

Choosing Change

There is nothing unique in saying change can be scary. It often is. Even when you choose it as I did recently when I resigned from the New York State Council on Independent Living, as remarkable a group of people as I’ve ever worked with.

The heartfelt commitment I witnessed in council members to the rights of people with disabilities to live independently, which means as equal citizens, is breathtaking. I hesitate to mention certain members because all deserve to be mentioned, but I’m going to do so anyway. The two who dazzled me most were and are Bruce Darling and Brad Williams, the former being the head of the remarkable Center for Disability Rights  and the latter being the executive director of NYSILC.

I resigned from the council for three reasons: it is time to focus on my writing, my stamina level is not what it once was, and, at age 57, I don’t know how many years I have left. There are books I am writing and want to write along with short stories, blog essays, and, well, anything else that strikes my fancy. I need to finish a memoir, I task I’ve let lag far too along with two novels and a non-fiction work about working in the field of disability, brain injury specifically, a book I’m calling It’s All About Respect.

Do I find the change I’ve chosen scary? You betcha. But there is an expression about fear I wrote some years back that I love: It’s okay to be afraid, don’t let it scare you. If we wait until the fear leaves before we make the changes we want, they’ll never get made.

Henry David Thoreau’s line was a great help to me in summoning the moxie to make this change. “Go confidently in the directions of your dreams! Live the life you’ve imagined.” This goes for you too.

Days in Brain Injury Health Care – Part I

“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.