From Susan Parker: A Tireless Disabilities Advocate Ships Out

Friday August 06, 2004

When my husband had a bicycling accident 10 years ago and became wheelchair bound, unable to move below the shoulders, besides going crazy I also went in search of help. I didn't know anyone personally with his kind of injury, C-4 quadriplegia. I had find advice and resources any way that I could. It wasn’t easy. 

The hospital released Ralph from rehab nine weeks after his accident. An electric wheelchair was on order and he was sent home in a manual chair, with instructions that I was to move him up and down every 20 minutes so that he wouldn’t get sores from sitting in one position for too long. With no use of his arms or legs, he could not go anywhere without my muscle power. We immediately began looking for an electric wheelchair to rent while we waited.  

Miraculously, I found a rental place not far from our home. Grandmar is a company located in Emeryville that provides new and used home medical equipment. I was told that they were the experts, particularly in repairs, and that I should check them out. 

John Cains, the quirky, irascible proprietor of Grandmar, came to our home immediately and assessed our situation. He was able to provide Ralph with a temporary electric wheelchair. Grandmar is not an authorized vendor for Kaiser, so we paid for the rental out of pocket.  

Two months later, when Ralph’s wheelchair finally arrived, we spent many frustrating days traveling to Kaiser’s Vallejo Rehabilitation Center in order to get him seated in the chair comfortably. But these visits proved fruitless. Without the use of back muscles, and with constant spasms that jerked his body around in his new chair, the specialists could not keep him straight. Finally, we went back to Grandmar for help. 

John was able to customize special pads and blockers to keep Ralph upright in his chair. I could take Ralph’s wheelchair to John without a referral, unlike Kaiser’s vendors. Instead of waiting days for an appointment, he was able to help us, sometimes within minutes, always within 24 hours. There were no layers of administrative bureaucracy to go through, and Grandmar is open on Saturdays. I push Ralph’s wheelchair into the massive, cluttered warehouse where an always-on-duty mechanic evaluates and gives an estimate as to how long repairs will take and what it will cost. 

For the past 10 years we have used the services of Grandmar. In the meantime wheelchair vendors for Kaiser have changed several times. Last week, when Ralph got stuck in a railing at a local movie theater, and the controls of his wheelchair were damaged, I took his chair to Grandmar. As usual, I left it there and came home, expecting a call within 24 hours. But after three days, and Ralph unable to get out of bed, I called them. And that’s when I heard the news: John Cains was dead. His six-year fight with cancer was finally over. A loyal and tireless disabilities advocate, John will be missed. 

What will happen to those of us who have come to depend on his services? I don’t know. It took five days to get an appointment with the Kaiser vendor. I drove the wheelchair down to the shop in San Leandro. When no one called me on the status of the chair, I called them. I was referred back to Kaiser. I left messages and talked with several people. I was told that the paperwork had become confused, that the vendor was at fault, that someone at Kaiser was out sick, and that someone else was on vacation. Kaiser has a message on every department’s answering machine that says, “If this is an emergency call 911.” To John Cains, it was always an emergency. But to the Kaiser bureaucratic behemoth it’s just a man with a broken wheelchair who can’t get out of bed.