Barack Obama has mastered an art that I have spent much of my life trying to master. This art is commonly known as community organizing, but I’ve always thought it was more akin to “herding turtles.” Wikipedia defines community organizing as “civil society non-profits that operate within a…community.” These organizations are filled with many diverse people with their own well intentioned agendas. Sometimes, getting these folks to move in one unified direction is as easy as getting fifty turtles to cross a street.
Obama and I have had very different experiences in our journey through our communities. I am not running for president, which as far as I can imagine must feel like the Large Hadron Collider of community organizing. However, I am operating with cerebral palsy and a severe speech disability. Obama and I each have our own turtles, but without fail we keep trying to get them to the other side of that street.
Unlike Obama, I had an advantage in my early life. Obama’s journey of leadership began at a much later age than mine did. My father was the leader of several Jewish communities in the United States. Watching Dad’s trials and errors gave me a head start. His job included raising and distributing funds and organizing recreational and educational programs. This proved very stressful at times, because of the myriad agendas of the volunteers he was working with. It was by watching him that I came to understand his position in the community as a turtle shepherd.
Many people with whom Dad worked were donors who felt that their large donations gave them the right to dictate agency goals. Dad laughingly recalled a budget meeting at which the biggest donor went on a tirade because of an expense for wooden pliers. He spent fifteen minutes criticizing Dad for allowing the janitor to spend money on wooden pliers when metal ones were stronger and cheaper. This rich, autocratic donor was a bit sheepish when Dad explained that the wooden pliers were for the janitor’s safety when doing electrical work. Dad also joked that much of his time was spent preventing several of the local Rabbis from killing each other (or the janitor).
v Later in life Dad became a social work and sociology professor at the University of Texas at Austin. In 1969, at the height of the Vietnam War, he utilized the same mediation skills he had developed earlier when the Students for a Democratic Society (SDS) brought their national convention to the campus. The Texas state politicians were also there herding turtles at the capital. The police and politicians were determined to have a confrontation with SDS-a veritable showdown at the OK Corral. Dad organized the campus clergy to take roles in calming down these opposing factions. When the University denied SDS the privilege of meeting on campus, the religious centers organized to provide space for each of the SDS events. The clergy chaperoned the events and intervened any time an SDS member proposed illegal action. Dad also convinced the Austin police to stay off of the campus unless they were called. He neutralized the right-wing extremists and kept the confrontation at bay-a confrontation that would have erupted in violence. The closest they came to an incident was when some of the more radical SDS members skinny dipped in the campus pond. The attending clergymen convinced the radicals to put their clothes back on before any police could be called.
As an adult, I took over the family business and have been herding my own turtles for the last twenty years. I took the tools my father gave me and got off to a running start. Having a speech disability made me the perfect candidate for a committee assignment dealing with speech disabilities for the California Public Utilities Commission. This position allowed me to work towards developing a telephone assistance service for Californians with speech disabilities.
I wanted to enable People with Speech Disabilities (PSDs) in all states and in several other countries to have an accessible telephone service. In 1990, out of my own frustration over not being understood over the phone, I started Speech to Speech (STS), a service where trained professionals to revoice for me. STS works much like TTY relay for the deaf community. I successfully lobbied the California Public Utilities Commission (PUC) and the FCC to require that STS be added as a service of the TTY relay. Additionally, I was privileged to help write the FCC regulations for STS. I also visited every member of the California Legislature asking for their signatures on letters to the California PUC in support of STS. Most of them agreed to do so, probably because in addition to its lack of controversy, they most likely wanted to get me and my huge power wheelchair out of their small offices to make room for better financed lobbyists!
Daily independence is often taken for granted. To make a phone call and be understood by the person on the other end is a golden opportunity for someone with speech disabilities. Imagine all of the phone calls you have made in the last week. Now imagine that instead of just being able to plug in your blue tooth and go, you had to ask a friend to help you make every call. We all deserve a high quality of life even those of us with disabilities.
The continued success of STS depends upon a delicate balance between consumer needs, state and federal regulations, and the ability of the contracting telephone companies to make a profit. There are many problems facing STS and if these problems were addressed, the FCC and the contracting telephone companies could work together to make this program effective for everyone involved.
This is not a comprehensive list of the systemic problems with STS. I am not accusing any provider of wrong doing, nor am I apologizing for the inability of those of us who designed STS to predict the difficulties that would evolve over time. STS needs to be as easily accessible as TTY. Providers need to see profit incentive from this service, and consumers need to have the best possible access to their independence.
This subpopulation cannot speak for itself and needs your voice. The best thing you can do to help people with speech disabilities is to file comments with the FCC. Meanwhile, like Obama, I’ll keep herding turtles, and trying to improve the quality of life for my community.
Copyright © August 2008
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