Tag Archives: john

More on compassion, love & advocacy

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Three very thoughtful comments in response to the last blog post,  Anger, compassion, love, advocacy & BIANYS,  along with some equally thoughtful emails and phone conversations have helped me recognize it would be wise for me to write more about what one reader accurately summed up: “Your recent blog piece sounds like you are reviewing your advocacy tactics.” It’s true. I am and always try to with varying degrees of success.

All of us are wise to keep track of the patterns we find ourselves in. Sometimes it takes those close to us to point them out, and if we are centered enough, we can try on these observations and change accordingly without falling into the trap of clinging to old habits. John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” How true.

I want to comment a bit on some of what I’ve read and heard in response to the last blog piece. But first  we must stipulate to the fact that the very act of holding people and organizations accountable may upset people. I can’t do anything about this. What I can do is advocate with intensity and tenacity and honesty and do my level best not to make anything sound personal. But, if leaders of various groups, government agencies, and others blatantly ignore those they claim to serve, I am going to say so. If organizations do not do what they tell people they do, I am going to say so. I have no other choice. One thing is very clear, things can’t go along business as usual when it comes to the realities currently being faced not just by brain-injured New Yorkers but by all people with disabilities in this state and beyond.

What I must pay close attention to is my contribution to the push for change. People in leadership positions must recognize and, in their choices, live the following reality: the Kahrmann Advocacy Coalition is not about Peter Kahrmann any more than the Brain Injury Association of NY State is about Judy Avner or Marie Cavallo, or the Traumatic Brain Injury Services Coordinating Council is about Michael Kaplen and Judy Avner. These groups are about and only about the people they are there to serve. And if any of us – including me! – gets too it’s-all-about-me, people around us need to call our attention to this and we need to listen and change accordingly.

Some things are not personal. It is not a personal attack for me to point out that Michael Kaplen and Judy Avner are sitting on a council even though their terms expired seven and eight years ago respectively. There is something not right about this and it needs to be addressed and I would point out this truth gives them the opportunity  to do what anyone – including me – in leadership positions must do – and that is recognize when we’ve fumbled or gone wrong and do the right thing. There is nothing personal about my pointing out that the council, certainly under Kaplen’s chairmanship, has failed to do pretty much of anything it was designed to do, and this is something he needs to reflect on, step down, and let others take the lead.  Upon hearing that George Washington stepped down after his second presidential term, King George of England said, “If Washington gave up power he is the greatest man on earth.”

Now, to the comments.

One person wrote in a beautiful statement about Marie Cavallo and I could not agree more. Marie has very much given and continues to give her heart and soul to the cause of brain-injured New Yorkers. It is true too that she is in a position where speaking what she really thinks is politically risky, and here is where, like me, she may want to do some reflection; is the “forced” silence worth the position? Only she can decide that. I love her no matter what she does, and I can say the same about Judy.

Another person wrote, in part, about the importance of establishing partnerships; they too are right. It is important (I am quite sure my correspondent knows this) that groups who form partnerships understand they are partnerships, meaning one group can’t simply say to another; you must accept everything about us as is, especially when some of the as is hinders or impedes equal rights for brain-injured New Yorkers.

Another person wrote in pointing out that BIANYS  is no longer the answering component for the complaint line, now the regional representatives for DOH will do that. Two things: this change does not change the fact complainants never get the results of their complaints and perhaps now BIANYS will be able to openly advocate that they do.

We are all works in progress – including me.

A Short Story: The Heart of Sidney Chest

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Sidney Chest sits erect in his custom made Ermenegildo Zegna suit made by Mr. Kelly at La Rukico Tailors, joking that the blue dress shirt he has on is his least favorite but it was the only clean one he had left in his lambskin overnight bag. He has, after all, stayed over an extra night in the city of Patch Falls to help guide his company’s handling of those Sidney Chest refers to as my TBI people. TBI meaning traumatic brain injury, injuries sustained from a blow to the head, falls, assaults, car accidents, bicycle accidents and so on. Sidney Chest owns and runs a company that provides supportive services, or so they are called, to men and women who live with brain injuries so they might continue to live in the community rather than in institutions. Their injuries have robbed them of their peoplehood in the eyes of many, including the hazel eyes of Sidney Chest, who feigns caring about those poor TBI people who are viewed by Chest and his ilk as a plethora of cottage industries – profit makers.

Leaning back in his leather desk chair, Sydney Chest makes a mental note to have the chair cleaned. It was given to him by his wife Alice on their fifth wedding anniversary. "So what is the issue here with Allen Small?"

"He’s not happy with his staff. Says they talk to him like he’s a child." These words come in bored tones from Sally Stipple, a rather rotund woman with two strands of thick black beads around her neck and matching earrings. Her lips are large, pasty and pointless, like two dollops of silly putty hastily applied. She wears no make-up save for bright red lipstick. She wears a nose ring. She is 44 years old, looks 60, is divorced, no children, and, is a former nursing administrator. She sees the TBI people for what she knows they were. Needy, often misguided beings who are, if not entirely absent any purpose in life, entirely absent any real future in life. These people, though they aren’t really people any more, at least not completely, are stuck in place, damn lucky to get the services they are getting, and would do themselves a bit of justice, yes they would, if they’d just learn to show a little gratitude. They are forever complaining they are being talked too like they are children when they ought to be glad people are talking to them at all.

Sally Stipple runs a tight ship and Sidney Chest likes her for it and will go on liking her for it as long as Sally Stipple’s dictatorial streak keeps the billing up to speed which keeps the money coming in. In Sydney Chest’s world, Sally Stipple is what health care is all about, at least the health care his company is about if he has anything to say about it thank you very much. the company he boisterously calls the best of its kind in Patch Falls and the surrounding area.

Sydney Chest keeps the stress on billing by crying poverty (he’s actually very wealthy) at all times. He knows it was important to instill in his employees the fear-producing belief that the company is always one billing cycle away from total collapse, that if it wasn’t for his willingness to infuse the company’s coffers with his own personal money and the money of his darling wife Alice for that matter, the entire operation would collapse into a pile of dust and be swept away by the day’s first breeze.

His feigned poverty  underscores the hideously misguided belief that his is a generous heart when he deigns to take a survivor of brain injury out for breakfast or lunch and feigns listening with genuine interest and concern, sending the survivor back into the day program that, like many other programs of its kind, proves there is such a thing as community-based warehousing. Sadly, if there is naiveté or perpetual hunger in the heart of the survivor, quite a few, not all mind you, find themselves blinded by the wondrous portions of food just consumed, thanks to the beneficent Mr. Chest, and  Mr. Chest’s willingness to even order him or her a coffee to go. They return to the confines of the day program and talk about how kind Mr. Chest is, not realizing, at least in the moment, that the heart of a cadaver has more warmth than the organ that beats greed in the bosom of Sydney Chest.