T.S. Elliot was right when he said: “There’s no greater heresy than to do the right thing for the wrong reasons.”
In the world of advocacy there is no greater heresy than hypocrisy, especially when it comes from those who say the right things for the wrong reasons, self-aggrandizement and the ability to feel powerful. There is also no greater heresy than those who, when asked for the specifics of their decisions and actions, engage in double talk, spin, or, in some cases, simply say nothing.
And so it is that I and others have been emailing with the Brain Injury Association of NY State in the hopes BIANYS will, for the first time in this writer’s memory, permit an open-dialogue forum online for its members. This is something quite a few members (including former BIANYS board members) have asked for. The request was prompted by the fact that a long-term BIANYS member with a brain injury resigned as a BIANYS support group facilitator in part because BIANYS leadership, he explained, might hear that those of us with brain injuries are talking but they don’t really listen to what we are saying.
There is no argument that communication could use some improvement, not just between the members and BIANYS leadership, but among members statewide.
Thus far we have suggest an online message board. BIANYS, represented in the email exchanges by its board president, Marie Cavallo, said they don’t have time for a message board but would consider it in the future. It was then suggested that BIANYS open its Facebook pages so those who “like” the page can initiate comments and communicated with each other. At first the answer to this was no because, Ms. Cavallo explained, in the past providers has used an open FB format to advertise. It was pointed out the FB permits the user to block those that abuse the page. Ms. Cavallo then said opening the FB was a possibility but there was concern doing so would be a drain on staff’s time. BIA from New Jersey, Massachusetts, Connecticut and many others have open FB pages.
Transparency, an openness to communication and sensitivity to membership are critical components to any advocacy organization.
It is important to note that Judith Avner, the executive director of BIANYS, won’t take part in these discussions. At one point Ms. Cavallo explained this is because she, as president, represents BIANYS, but to whom? To its members? Are the members really seen as being separate from the organization? An unsettling notion at best. After all, Ms. Avner speaks at numerous conferences, fund raisers, speaks to the board, but, not, it seems, to the members. BIANYS financial statements reveal Ms. Avner is paid roughly $2,000 a week.
I don’t envy Ms. Cavallo her position. In all the years I’ve known her it is clear to me she has a good heart and genuinely cares. The question is, has she found herself in the position of, when it comes down to it, representing Ms. Avner.
We’ve asked other questions as well and are looking forward to the answers. Two of them are:
How many persons with a brain injury does BIANYS currently employ and how many persons with a brain injury has BIANYS employed since Ms. Avner took the helm on or about 1987?
What is BIANYS specifically advocating for or against, how are members and the public informed of these specifics, and how are the members included in determining advocacy issues?
Not answering the questions couple with an executive director who refuses to take part in the discussion carries the bitter taste of hypocrisy.
Let’s hope the answers come soon so we can all work together.