Anger, compassion, love, advocacy & BIANYS

I am always surprised when I hear there are or may be people who are scared of me or perceive me as being a walking bundle of anger when it comes to my advocacy. Our view of ourselves never matches the way others see us and so we are fortunate to have friends and loved ones who are honest with us.

There are some who mistakenly believe I have some personal anger and dislike for people like Judith Avner and Marie Cavallo, executive director and president of the Brain Injury Association of New York State. The fact of the matter is I love them both very much and if word reached me tomorrow that life had wounded either of them in any way I would be there for them in a  heartbeat. The fact we have  some significant differences on other fronts in no way diminishes my love for each of them.

There is a fine line between holding people and organizations accountable as opposed to lashing into them with what comes across as personal anger;  and I am not about to pretend or claim that I’ve walked that line perfectly. I do know that my responsibility, a chosen responsibility, is to be honest with the world around me, which means being honest about what I know to be my flaws. I am not perfect nor will I ever be. I am deeply honest and deeply compassionate and I am deeply committed, right to the marrow of my very soul, to equal rights for all people – all people.

When it comes to equal rights, whether they be for people with brain injuries, blacks, Latinos, Jews, gays and lesbians, Asians, Muslims and so forth, it is not about me, and I can’t make my choices or write pieces here in this blog based on what I find emotionally comfortable or pleasing. On a deeply personal level I hate holding people I love like Judy and Marie publically accountable for things; my heart hurts over my current estrangement from BIANYS. I have had a relationship with them for many years.

BIANYS does certain things magnificently. They are the best educational  and information resource on brain injury in the state (It blows my mind that the New York State Department of Health doesn’t take advantage of BIANYS trainings for its staff who are involved with brain injury).  BIANYS has a grant from OPWDD (Office for People with Developmental Disabilities) that allows them to employ a group of people who are able to advocate for brain-injured New Yorkers if they received their injuries before the age of 18. The BIANYS staff who do this work are superb. However, BIANYS does  not have the staff and, in my view, because they do not want to risk losing a grant from the New York State Department of Health, will not publically hold the DOH accountable for some of its ongoing horrendous behavior when it comes to the TBI Waiver, and, as a result, does not publically advocate for people on the TBI Waiver, people  who sustained their injuries over the age of 18 and under the age of 64. Therein lies our differences; you can’t claim the mantel of leading advocacy agency for brain-injured New Yorkers in the State and remain silent when it comes to DOH behavior.

Now, about my anger, and yes, it is there, not as much as you might think but there are times, yes, I am angry. It is true that behind most anger is heartbreak, sadness. And it breaks my heart, deeply saddens me when I see brain-injured New Yorkers being treated by the DOH and others as if they are less than human, and, in some ways, as if they are disposable. And so I can’t remain silent, nor will I. All I ask is that people and organizations actually do what they say they do. No more, no less.

But let me say again; Judy and Marie are not my enemies, I do not dislike either of them. As I said, I love them both, very much. I hope as the days move forward some of the gap can be closed. We’ll see, it takes movement on both sides, one day at a time.

3 thoughts on “Anger, compassion, love, advocacy & BIANYS

  1. Peter, your criticism regarding BIANYS may be one thing however Marie Cavallo has had a long distinguished career helping people with disabilities and people with brain injuries and the waiver program. Marie does not need anyone to defend her, but the fact is it would be wonderful to have more people like her advocating and helping people with disabilities. If her role in BIANYS does not allow her to publicly voice certain things, that should not in any way obscure the fact that she has for years advocated on behalf of providers and participants and their families, that she has dedicated her career in the service of people with disabilities including brain injury survisors. The fact is she is one first people along with a few others who worked tiredlessly years ago to develop and expand the waiver program and its services. The same program that serves thousands of people, like you Peter, who benefit from these wonderful services. Your criticism is valid and in some regards fair about DOH, BIANYS etc. Your advocacy should continue but care must be always be exercised "not to throw out the bath water with the baby"…Lets keep our advocacy and constructive criticism with the organizations separate from deteriorating to personal attacks on people….especially people who have dedicated their lives assisting people with brain injuries like Marie Cavallo.

  2. The RRDCs are informing people that BIANYS no longer serves as the call center for complaints related to TBI waiver. This responsibility will be assumed by the RRDC and another number for complaints will be forwarded by each RRDC.

  3. The comment posted is well stated. Personal attacks are not only damaging to the people being attacked but also,to you Peter.You are accountable for your actions as is everyone else.Your recent blog piece sounds like you are reviewing your advocacy tactics. I would also urge other readers to comment because more said can help move your efforts in a postive direction.There are many people who want change too but it can only happen if we recognize the best way to get there.Establishing trust with others and building parterships is crucial. Best of luck to you.


Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.