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.

NY State’s assault on NYers with brain injuries continues unchecked

The New York State Department of Health is refusing to release the names of the people  drafting the new manual for the state’s Traumatic Brain Injury Waiver.  To his credit, Deputy DOH Commissioner Mark Kissinger has revealed the state’s  opinion of New Yorkers with brain injuries, particularly those participating in the TBI Waiver. He ignores them. He now ignores written requests for the names of those DOH staff (and contract employees, if any, are involved) designing the TBI Waiver Manual. Moreover, the DOH, thus far,  has not honored a Freedom of Information Law request for the names filed by this writer.

The TBI Waiver is a Medicaid program designed to keep those with brain injury disabilities living in the community and to help others return to the community. Kissinger, who has more than once and no doubt will again profess DOH’s desire to work with all stakeholders – has proven that assertion to be glaringly disingenuous. It’s too bad because the likes of the Brain Injury Association of NY State, the state’s Traumatic Brain Injury Services Coordinating Council, Disability Rights New York (the state’s protection and advocacy agency),  the Kahrmann Advocacy Coalition, along with people with brain injury disabilities, their  families a friends, experts in the field of neurology, and more,  are all willing and eager to work collaboratively with the DOH. The DOH is not interested in collaborating with anyone.

Disrespecting New Yorkers  with brain injury disabilities is nothing new for the DOH. Things have gotten even worse under Governor Andrew Cuomo. Several, who have asked not to be named out of fear of reprisal from the governor, have said Cuomo is something of a bully. I’m not surprised. It would be nice to learn otherwise, but actions speak louder than words and given that Cuomo has a well-earned and even admirable reputation for keeping close tabs on all state agencies, it is impossible to believe he is unaware of the DOH’s disrespectful and ruthless treatment of NYers with brain injury disabilities, not to mention the similar treatment the state inflicts on those waiver providers struggling to provide the best services for their clients. There has not been an increase in reimbursement rates for them since 2007 and providers receive zero reimbursement for training their staff in brain injury.

All this brings us back to the DOH’s refusal to release the names of those designing the TBI Manual. I suspect one of the underpinnings for the refusal is this: those developing the manual have no expertise whatever in the brain or brain injury. A sickening and scary truth.

Please don’t think this is the only example of the DOH savaging the rights of New Yorkers with brain injuries.  Until November 2011,  if you filed a complaint related to the TBI Waiver you were never ever informed of the outcome of the complaint. If you were a waiver participant and your rights were denied in some way or you’d been abused or had your belongings stolen by a staff member and you filed a complaint with the DOH, you were never told the outcome of the complaint. The DOH acknowledges this. And, when it claimed to have changed this policy, agreeing to inform participants of the outcomes of their complaints, one DOH official admitted  the DOH was unable to provide the outcomes for the thousands of complaints previously filed. Given the waiver came to New York in 1995 were talking about complaints filed over a span of 16 years whose outcomes will never be provided to the complainants. Interestingly,  the DOH official who openly admitted the DOH was unable to provide the outcomes to these complaints was none other than Deputy Commissioner Mark Kissinger, the very same DOH official who now ignores requests for information New Yorkers legally have a right to.

You wonder if the likes of Kissinger and Cuomo forget they work for New Yorkers. Perhaps they simply don’t care.

NY State’s assault on NYers with brain injuries continues unchecked

The New York State Department of Health is refusing to release the names of the people  drafting the new manual for the state’s Traumatic Brain Injury Waiver.  To his credit, Deputy DOH Commissioner Mark Kissinger has revealed the state’s  opinion of New Yorkers with brain injuries, particularly those participating in the TBI Waiver. He ignores them. He now ignores written requests for the names of those DOH staff (and contract employees, if any, are involved) designing the TBI Waiver Manual. Moreover, the DOH, thus far,  has not honored a Freedom of Information Law request for the names filed by this writer.

The TBI Waiver is a Medicaid program designed to keep those with brain injury disabilities living in the community and to help others return to the community. Kissinger, who has more than once and no doubt will again profess DOH’s desire to work with all stakeholders – has proven that assertion to be glaringly disingenuous. It’s too bad because the likes of the Brain Injury Association of NY State, the state’s Traumatic Brain Injury Services Coordinating Council, Disability Rights New York (the state’s protection and advocacy agency),  the Kahrmann Advocacy Coalition, along with people with brain injury disabilities, their  families a friends, experts in the field of neurology, and more,  are all willing and eager to work collaboratively with the DOH. The DOH is not interested in collaborating with anyone.

Disrespecting New Yorkers  with brain injury disabilities is nothing new for the DOH. Things have gotten even worse under Governor Andrew Cuomo. Several, who have asked not to be named out of fear of reprisal from the governor, have said Cuomo is something of a bully. I’m not surprised. It would be nice to learn otherwise, but actions speak louder than words and given that Cuomo has a well-earned and even admirable reputation for keeping close tabs on all state agencies, it is impossible to believe he is unaware of the DOH’s disrespectful and ruthless treatment of NYers with brain injury disabilities, not to mention the similar treatment the state inflicts on those waiver providers struggling to provide the best services for their clients. There has not been an increase in reimbursement rates for them since 2007 and providers receive zero reimbursement for training their staff in brain injury.

All this brings us back to the DOH’s refusal to release the names of those designing the TBI Manual. I suspect one of the underpinnings for the refusal is this: those developing the manual have no expertise whatever in the brain or brain injury. A sickening and scary truth.

Please don’t think this is the only example of the DOH savaging the rights of New Yorkers with brain injuries.  Until November 2011,  if you filed a complaint related to the TBI Waiver you were never ever informed of the outcome of the complaint. If you were a waiver participant and your rights were denied in some way or you’d been abused or had your belongings stolen by a staff member and you filed a complaint with the DOH, you were never told the outcome of the complaint. The DOH acknowledges this. And, when it claimed to have changed this policy, agreeing to inform participants of the outcomes of their complaints, one DOH official admitted  the DOH was unable to provide the outcomes for the thousands of complaints previously filed. Given the waiver came to New York in 1995 were talking about complaints filed over a span of 16 years whose outcomes will never be provided to the complainants. Interestingly,  the DOH official who openly admitted the DOH was unable to provide the outcomes to these complaints was none other than Deputy Commissioner Mark Kissinger, the very same DOH official who now ignores requests for information New Yorkers legally have a right to.

You wonder if the likes of Kissinger and Cuomo forget they work for New Yorkers. Perhaps they simply don’t care.

Willing to fall down

A brain injury is not a static being. One’s relationship with the damage changes overtime. I am no exception. It is also hard at times to determine how much is the injury and how much is rooted in one’s emotional configuration.

There was a time after the injury in which I could work 50 to 60 hours a week. That ended some years back as fatigue is an issue now. Keep in mind that a damaged brain is physically working harder than a non-damaged brain. It’s as if a six-cylinder engine is now running on five cylinders. It still runs, but it has to work harder to run.

I also deal with PTSD. So do many others with brain injury. PTSD (Post Traumatic Stress Disorder) is essentially a disorder that results from a trauma out of the norm. In my case it was being held up and shot in the head. I imagine the combination of living on the streets, being held under gunpoint for several hours before escaping, and being held up at gunpoint only months after the shooting also contributed to the presence of the PTSD.  The damage in my frontal lobe as a result of the bullet does not help. Of late, my isolating has spiked. It is rare I leave the house. I’ll put off shopping or going to the library until the last minute.

I do manage to get to the support groups I facilitate for people with brain injuries and I do manage to get to leadership team meetings for the Kahrmann Advocacy Coalition. I also get to meetings of New York State’s Traumatic Brain Injury Services Coordinating Council. I suppose I am able to break out of seclusion for the aforementioned reasons because lives are at stake, people’s equal rights are at stake, and spending time with fellow survivors of brain injury means a great deal to me.

I can tell you that the day-in day-out struggle with the PTSD-isolation is exhausting and upsetting. Those who know this terrain like I do, and there are many who do, will understand when I say it is not a matter of not wanting to go out. I do. It is a matter of breaking through what I call the fear wall. Today I succeeded in returning a book to the library. It was beautiful weather and my plan was to park and walk about the town. I couldn’t do it. I drove about the town for a short time and managed to stop at the market for a bit of food. There was a moment in the market when I was frozen still with terror. Part of me wanted to drop my shopping basket and run for the exit. Instead I finished my task and hustled back home.

Once home I realize that in that terror moment I was worried that the internal trembling would become so pronounced and debilitating that I would fall down. It then dawned on me that I need to be willing to fall down, push the edge of the terror envelope in other words and if it makes me fall down, so be it.

I will not give up, of that you can be sure. Why do I write a piece like this? In part I write it because there are many who face the same things I do and if they read this they’ll be reminded and reassured they’re not alone. And if there is anything I have learned in life it is this; the challenges we face become more manageable when we realize we are not facing them alone.

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.