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I don’t have anyone with a disability in my family, though I always gravitated to my classmates in school that did. As a child, I was best friends with a girl with a physical disability named Elizabeth, who had a hard time making friends, but I never gave it a second thought. Perhaps it was due to my mother, who was a special education teacher and especially crazy about her students with Down syndrome. There was never any inkling from her that these students weren’t anything but themselves, not defined by their disability, as all teachers should be towards their students. Having Down syndrome was like having blue eyes or being left-handed, and that was imparted to me and colored the rest of my life, really.
As I got older, and moved to California, I had no real connection with the disabled community. I was a journalist with the East Bay Express for several years and during my last year, a story came to me that people who were in wheelchairs or were visually impaired were being left at bus stops. AC Transit busses would blow past them if they were late on their routes, not wanting to take the time needed to assist anyone who might need help getting to their seat.
My research for the story took me to the Cerebral Palsy Center in Oakland. I walked in and there was no one at the front desk, so being the intrepid Lois Lane that I fancied myself, I began to snoop around. I heard some music coming from a room and lots of laughter and clapping. I peered around the corner and saw a large rec room loaded with people dancing. Folks were dancing in their chairs or, if they could stand, simply getting down all over the place. Those who had little movement with their hands were using the controls of the chairs to scoot back and forth. The room was full of joy. At the center was a bearded man doing the robot; I took him to be a staff member. I instantly thought that he must have the best job in the world. I put that away in my mental rolodex.
When my job ended at the East Bay Express, I knew I wanted to go in a completely new direction. I searched “developmentally disabled” on Craig’s List and landed in Marin County working for a progressive day program, Pacific Diversified Services (PDS). I was lucky enough to end up in a place that strengthened my passion for disability rights. Our clients all had jobs, which we would job coach at if needed, and they all got their paychecks from those jobs and spent the money out in the community in the ways they chose for themselves. For some that meant going out to lunch, for others it was seeing a movie. The revolutionary idea behind all of this of course was that they lived like adults, in control of their own money. We also only traveled in very small groups, so that going out in the world wasn’t a field trip but rather something adults would do with their friends. Get coffee and chat. Take a yoga class.
At PDS, we had some clients that had challenging behaviors, but it was not our job to change them. It was our job to help them avoid reaching that point and, if they were having a bad day, they were having a bad day. “Behaviors are communications,” said the PDS director.
From PDS I went to Toolworks in San Francisco, another progressive agency. We strove to give all clients, even the most in need of supports, the opportunity to design the life they wanted, with whom they wanted. The Lanterman Act played out in real time. Again, we had some challenging clients, but I was always excited to work with them. I worked with some clients that other staff refused to, and we had a mutual respect for each other. We enjoyed each other, even.
My hands-on work with clients came to an end about five years ago, after being a community support specialist in supported living, independent living, and day programs for 15 years. It is taxing on the body, for starters, and I found myself with less energy to give our clients what they deserved in a staff person.
So, all of this is what I bring to The Arc of California. My interests continue to be policy and disability rights, but I am of course always very interested in advocating for the people who work with the disabled population. It is still true to this day, that the closer a person is to a client, and I mean close, as is personal-care-close, the less money they make in this career path. The farther one gets from actual consumers, the more money they make. For so many clients, their staff may be one of the only people they spend time with. There is nothing in the world more important than that. I was very happy when the certificate program for these workers came about.
I’m back being a journalist again and I’m always looking for more stories like my bus expose. And I’m a proud member of the The Arc of California Board of Directors.