My days filled with tears

I’ve done more crying over the last week or two than I have in many years, a reality that doesn’t worry me in the least, but, until very recently, it confused me because I couldn’t figure out why they hell I was crying. I don’t mind my emotional life experience. I do like to understand it. Especially since this recent stint of tearfalls began right after getting great news.

Watch, I’ll show you.

  • The Kahrmann Advocacy Coalition application for pro bono legal services filed with a group that will wed us to a top law firm has been accepted.  Good news. As a result, KAC is on its way to becoming a 501c3 nonprofit company. Very good news.
    • This means KAC will be able to file legal actions against some who are denying the rights of people with brain injury disabilities in New York State. Good news
    • It means we will be even more adept at uncovering and exposing various forms of corruption (which includes exposing those whose allegiance to the rights of individuals with brain injuries is lip service and lip service only). More good news.
    • It means we will be able to advocate for more people and in doing so, hopefully, make their lives a better place to be.  Really good news.
    • It means the waters will become more treacherous for those who oppress the rights of brain injury survivors, often by treating them as if they are nothing but revenue streams.  Very good news.

With all this good news, why the crying?

Let me again assure you I have no problems with the fact I’ve been crying a lot. No embarrassment and no worries that it means something has gone wrong with me. I know some have been convinced or have convinced themselves crying is an act of weakness. I would say to them, if crying is an act of weakness, why is it so hard for you to do it?

I want to understand, not avoid my my emotional experience in life. So, I reached out to my old therapist, an extraordinary man, Bill Buse. If anyone could help me track down the reason for my tears, he could. He did. I can’t tell my father and my mother. I can’t tell my family because I’ve not had an active family life since I was 16. That I can’t tell them drenches me in sadness.

And so, the tears. Now that I understand them, I am very grateful for them. Every one of them is testimony to the depth of my love for my parents, my sister, my family. Every single one of reflects how great it is that KAC will soon be a more powerful advocate than it already is. This would make my parents and my family very happy, and, if you’ll allow the “little boy” to peek out from behind his history, proud of me.

Kaplen & Avner hijacked NY State’s Brain Injury Council

In what can only be described as a self-serving power grab and utter disrespect for their colleagues and brain-injured New Yorkers, Michael Kaplen and Judith Avner continue to control the New York State’s Traumatic Brain Injury Services Coordinating Council (TBISCC) even though their terms on the council expired in 2004 and 2003 respectively.

A document released to a member of the Kahrmann Advocacy Coalition by the New York State Department of Health reveals that Kaplen’s term expired on February 12, 2004 and Avner’s term expired on August 9, 2003.  The fact they continue to show up at meetings and claim the mantel of council chair and vice-chair is, at minimum, an astonishing display of arrogance and, in an even harsher light,  a rather self-serving desire on both their parts to be the center of attention and control the state’s dialogue on brain injury.  Avner is the current executive director of the Brain Injury Association of NY State,  Kaplen is its past president. Both are lawyers. Advertisements for Kaplen’s law firm display a focus on representing brain-injured New Yorkers.

The TBISCC was formed in 1994 by an act of the state legislature and it can be and should be an important presence beneficial to brain injured-New Yorkers, providers of services to brain-injured New Yorkers and, not at all incidentally, the Department of Health. By design and purpose the council is there to provide the Department of Health with proposals for services for Brain-Injured New Yorkers. A review of council minutes under Kaplen and Avner reveals that the council has offered virtually nothing under their watch in the way of proposals.

As a brain-injured New Yorker and as one whose name is linked to the largest grassroots advocacy group for brain-injured New Yorkers in the state, I can tell you that the TBISCC must be allowed to flourish and act on its mission, two things that will not happen if it continues to be hijacked by two individuals who are not even members of the council anymore.

Back to Belvedere

Next  Monday I will go back to the Belvedere Brain Injury Program to talk with survivors and others about the Kahrmann Advocacy Coalition (KAC), the largest survivor-led advocacy coalition for brain injury survivors in the state. It will be my first time back since I was forced out in early 2008 because I would not remain quite when I saw survivors being denied their rights by some (not all) of the leadership in Belvedere’s substance abuse program. Moreover, until now, Belvedere has been, not surprisingly, the only brain injury program in the state that blocked KAC from presenting. The change in their stance is most welcome.

Neither I nor KAC is Belvedere’s enemy.

But this essay is not solely about the politics and power-play of things. It is also about my relationship with a group of remarkable people who attend Belvedere’s day programs. We worked together for years, and our bond, then and now, is deep-in-the-heart close. The forced end to our work together was not simply a brutal one for me emotionally and, for that matter, physically, it was a brutal one for the survivors. I know this because they’ve told me.

In fact, they were so upset then they got a petition together asking for my return and every single survivor signed it and presented it to the owner, John Mccooey. In response Mccooey, who I had for some time considered a friend, met with them and said, no, I couldn’t come back because of forces beyond his control, a excuse that is doubtful at best. About Mccooey: despite his brutal treatment of me in the end, were he hurt tomorrow I’d help him. Doesn’t mean I trust him, that would be something he’d have to earn back, but I’d still help him.

Mccooey back then told me Tim Feeney wanted me out and, by default, so did Pat Gumson and Bruce Rosen, the two New York State Department of Health officials who headed up the Traumatic Brain Injury Waiver at the time. I don’t know how much weight I actually give his excuse. It doesn’t matter though because Feeney has been rather right-sized, Pat Gumson has retired, and Bruce Rosen is working in another area for the DOH, and I’ve not been invited back. The main obstacle to my return was and is Mccooey and, I suspect, his somewhat misguided allegiance to a rather dysfunctional individual who heads up his substance abuse program, the same individual, by the way, who most actively demeaned survivors and denied them their rights.

I was recently asked (not by anyone from Belvedere) if I would be willing to facilitate workshops at Belvedere again. My answer revolves around what is always my focus in matters like this; what is the healthiest choice on the table for the survivors and for me. Were their a healthy way to go about it, I’d certainly consider it. But I would not consider it if I were to again be at risk for bogus accusations from the above referenced dysfunctional individual or anyone else for that matter. To give you an idea of what I’m talking about, I once apologized to Mr. Dysfunction for a misunderstanding and gently touched his shoulder. The next morning I learned that he’d gone scurrying upstairs like a whiney little brat to file a workplace harassment charge against me because I touched him! The charge was dismissed by the way (duh).

Anyway, it will be good to see these folks Monday. They already know, and perhaps Belvedere will figure out, that neither I nor KAC are anti-provider, not even when the provider is Belvedere. We are pro-anything that supports equal rights for all and legitimately helps people living with brain injuries achieve their maximum level of independence and we are against anything that doesn’t. As for my future with Belvedere let me just say: One day at a time.

Monday will be a good day. It will be good to see them and it will be hard to say goodbye.