Thursday, June 04, 2009

The meaning of Marty

As many more people than are ever likely to read this blog now know, Marty Omoto today announced the suspension of his advocacy work through the California Disability Community Action Network.  As everyone I'm aware reads this blog knows, Marty and I are both friends and colleagues and I admit to both a bias and an interest in his welfare.  So, like Mark Antony over the body of Caesar, I want to publicly share some thoughts about the systemic importance of Marty's work while maintaining the friendship privately.  Friends, Californians, countrymen, I come to contextualize Marty, not to praise him.

Going back to the days when he was with UCP, Marty is best known for his reports and townhall meetings.  Leaving aside other accomplishments, Marty's work has revolutionized advocacy in the narrowest sense of that word, preparing the people whose welfare is most affected by public policy with information and involving them in their own struggle.  

This is not the way things were done when I entered this system in 2000.  During the Service Delivery Reform effort, my introduction to this system, California's DD policy and Sacramento, stakeholders represented peers who were strangers.  A good person elected by a dozen or a hundred others to represent People First spoke for 200,000 strangers.  Someone selected by the State Council on Developmental disabilities spoke for the same 200,000 strangers.  A few associations sent lobbyists or representatives (of which one was Marty.)  These associations might have 100 or 200 members each or ten or twelve, and they would speak for their 8,000 peers, the overwhelming majority of whom were strangers.  ARCA would speak for their members and the 8000 providers and the 200,000 clients.  SEIU spoke for workers in the field, of whom, maybe, a few thousand were voting members and 100,000 were not consulted in any useful form or fashion.

Marty shared inside late-breaking information at all hours, to anyone interested.  Somewhere around 50,000 people are now kept up to date and provided a platform for input through Marty's efforts.  Is it possible that any stakeholder group ever gathered by DDS included the will of 500 people who had been substantively consulted or that 1000 people ever learned what had been discussed by any other channel?  

In an open vote in a public place, the proposition that our work ought to be person-centered would receive something near consensus.  In that same forum, we would pass a resolution for the dignity of every person with disabilities and their right to informed consent.  Any group of us with strangers watching supports the inclusion of people with disabilities into the whole tapestry of our society.  "Nothing about us without us" would be acclaimed at convention up to the rafters and down the street, born on the shoulders of confident advocates and electric wheelchairs.

In our system, there is always room for disagreeing with one another, always room for arguing with one another, and outside of the present emergency, even some room for pillaging, cheating and insulting each other.  But if we understand those principals we claim to uphold, there has to be room and support for the distributed, democratic and collective advocacy that wasn't here before Marty put it here and isn't likely to remain if he departs.