The Cost of Advocacy

Before I get started here, let me say that nothing but the end of my life will stop me from advocating for every person’s inalienable right to equal rights. Okay, now that we’ve got that out of the way, let’s begin.

It was early 2008 when I found myself in the Hannaford Supermarket talking with my friend, Eric. It was not long after I’d had all my workshops for brain injury survivors slammed to a halt and my income removed on a dime because, in short, I would not turn a blind eye or remain silent when witnessing people with disabilities, in this case brain injuries, being denied their rights and treated as if they were nothing more than wayward children.

How you doing?” Eric asked. Eric, I should say, is someone I worked with for years and a man I genuinely love like a brother.

I’m alright,” I said, “When I get really down I think about King and Gandhi and Medgar, and given the fact they were assassinated, I’m not doing too bad.”

Sounds like you were assassinated,” Eric said. In a way, I knew he was right. I also knew I was alive and could and would continue advocating for people being denied their equal rights.

During this time I’d begun looking into rumors that a man who headed up a neurobehavioral project for the New York State Department of Health did not have the credentials he said he did. In time the investigation would reveal the rumors were true, he was claiming to have college degrees he did not have and had been presenting himself as this in his job for the state and in his private professional work for well over a decade.

Now the thing about investigations, an honest following of the facts, if you will, is sometimes what gets uncovered bruises people you like and care about and or leads you to discover people you thought were totally honest and honorable were not that at all. If you are wedded to the truth, you keep going, because, if you are an advocate, you know your work is not about you, it is about the ongoing effort to make sure all people are given their equal rights, period.

I lost a friend as a result of the above referenced investigation. A man who was, in my view, one of the best and most seasoned advocates I know. Still is, I am sure. However, people he cared about were wounded as a result of what I uncovered. I can’t help that and certainly didn’t intend that. I also can’t help where the facts led. If people knowingly took part in a process in which survivors of brain injury, their families, and healthcare providers were being misled, there are consequences. Can’t and won’t help that either.

But here’s the thing. The pain or wounding I’ve endured and the pain and wounding my honorable friend endured are nothing in comparison to the pain and wounding people with disabilities live with day in and day out when they are being treated like they are little children or being denied their equal rights. Which is why I will keep on advocating and I know my friend will too.

For those wondering who my friend is, I will never tell you. Why? Because he is a good and honorable person who, like me, is imperfect, and I’ll be damned if I am going to wound him because a moment came along in his life when his loyalty to a misguided person he loves blinded him to the greater good on the advocacy front. After all, like me, he is only human, and is allowed the imperfections that come with that condition. After all, he has equal rights too.


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