More on compassion, love & advocacy

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.

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4 thoughts on “More on compassion, love & advocacy

  1. Peter, you are very special indeed. I believe it takes a great deal of personal integrity to rethink and reframe one's approach to things. Your piece is beautifully humble (without wavering on the hard truth) and it clearly demonstrates your desire to effectively serve those you advocate for and that the cause is much bigger and more important than any one of us.

  2. Let us all hope that other leaders in New York at the Department of Health and BIANYS and TBISCC show the same kind of integrity you do but we're not holding our breath.

  3. Peter,I would encourage you to put your weight advocating about the benefits of these waiver programs and the supports and services participants receive. Although things are not perfect, no one can question the great benefits they provide to survivors. It is not an exaggeration to state that without these waiver programs, many many survivors of TBI and other neurologic conditions would not be able to survive bery long in the community. Without the comprehensive services dedicated staff provide – HCSS, ILST, PBIS, CIC, etc – and the housing subsidy to enable individuals to live in the community, survivors will be forced to live in nursing homes and out of state facilities. These folks will never have the opportunity to live – albeit with supports – as indepedently as possible in the community, rebuilt friendships and relationships, and enjoy life as any other person would. Although its understandable that the state and federal government wants to review medicaid expenditures and everyone agrees that more efficiancy and cost savings are needed, it is also imperative that ALL stakeholders and especially participant advocacy groups invest ALL their energy to advocate that these programs remain stable and continue to prosper and support people ot live in the community. These programs by definition not only provide a better quality of life for people not only allows them to live as normal life as possible in the community of their choice but at the same time it SAVES the state thousands of dollars compared to "housing" them in a nursing or long term facility. I urge you to invest your energy to BUILD and FACILITATE bridges with the BIANYS, TBISCC, Provider Alliance and together with the DOH advocate that these programs must not be affected by the changes that the Medicaid Redesign Team recommends for implementation. Our programs save precious medicaid dollars and at the same time provides people with the opportunity to live as normal lives as possible…At this time there is no other agenda as important as this to you as a survivor and to the thousands of other survivors that participate in the TBI and NHTD Waiver Programs….Hope this resonates with you…

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