TBI Advocate: Out of Coma Emerges Leading TBI Advocate

TBI Advocate: Craig Part One

My interview with Craig Sicilia of the TBI Survivor’s Network was more than another TBI Voice.  Craig’s interview was more than a story of his survival and recovery from brain injury.  It was an opportunity to be at the epicenter of change, to be a TBI Advocate, from an approach based upon the professional attempting to service the needs of the brain injured, to an approach where the TBI survivor guides the future.

The conflict between professional TBI advocate and survivor are not new.  In the beginning of modern TBI advocates organizations, it was typically the family members, who turned their frustration with the poor TBI system for care and rehabilitation, into a movement for change.  Then typically professionals, like myself, would get involved, with an occasional survivor included. Rarely would any leadership responsibility be expected or power provided to the survivor.  So much of the effort of TBI advocate groups would get bogged down in board meetings and budgets – politics and conflict, that little would get accomplished.

This conflict between serving the “best interests” of survivors and allowing survivors to lead – has shaped and distorted brain injury advocacy for the full 20 years that I have been one of those professional TBI advocates.  What makes Craig’s approach different as a TBI advocate is he does not just call for more power sharing with the survivor, he has been successful in directing a program run by survivors, for survivors.

It comes from the people.  It’s just a civil rights movement, whether people want to see it that way or not.   When the medical model’s gone, society has to accept us.  If we accept ourselves and we walk out and society doesn’t… So our civil rights movement is not from tyranny or suppression, it’s from, existence. People can’t recognize that we’re there.

Tell me a little bit about yourself, Craig.

Pre‑injury or?

Well, we’ll talk a little bit about pre‑injury, but just tell me about who you are and what you’re doing these days.

Right now what I think my goal is to unify our nation, for the survivors because to be the number one cause of death and disability and to be so unknown, it’s kind of appalling.  And so, my mission originally was in my own community and it started there with my community.  So the mission right now is just to get everybody on the same page and then fight the battle that’s ahead of us.

Now we’re in Spokane, Washington, is that correct?

Correct.

You are part of a brain injury community here, is that correct?

Green Acres is the hub of the TBI Survivors Network and we support almost 500 groups around the world.

And what is the TBI Survivors Network?

Basically it started with myself wanting to find support and there were no groups here. So I contacted an association, I’m not going to get into the specifics, but they really weren’t interested in creating a peer network.  And so I got my first group started off Craig’s List.

After I got through the few nuts that come through Craig’s List, and met the first survivors, empowering.  Shortly after that we advocated for, a TBI Fund in our state and we added $2.00 onto every parking ticket and named it after Tommy. He went to his legislator’s office every day for a year.  It’s his 9:00 to 5:00 job to catch his legislator every time he went in and out.  Senator Flannigan was his name.  He’s retired now, but he was the first one to listen.  And then, with the Senator Hornsby here in our area,   between Flannigan and Hornsby they sponsored our state’s first TBI Act.

In some of our interviews we’ve not used the actual name of the people, but you want us to use your name?

You can use my name.

Next in Part Two – Early Morning Drunk Collides with Family