On Mothers’ Day 1972, I was backpacking with some friends in the Santa Cruz mountains, following a creek that runs into the Pacific Ocean. It turned into a warm afternoon, and when we came to a pool in the creek, we decided to take a swim. Failing to see the raised rock on the floor of the creek, I dove in, hitting my head. Dazed and in shock, I couldn’t tell up from down, nor did I realize that I had damaged my spinal cord. My friends carefully pulled me out of the water. An ambulance made it up the dirt road to take me to the emergency room. My life as a quadriplegic had begun.
It was a stroke of luck that I became disabled in the San Francisco Bay Area in the early 1970’s. The social ferment of the time had influenced some young people with disabilities to question entrenched social attitudes and stereotypes. While I was in the rehab hospital, we started a patient group that explored our future as newly disabled people, inviting speakers with disabilities who had created successful lives for themselves. We met members of “the Rolling Quads” from Berkeley, who were creating a new type of organization that was run by disabled people. Called the Center for Independent Living, it provided basic services for people with disabilities who were living on their own. I applied to law school at U.C. Berkeley, determined to bring my energies to the newly forming disability rights movement.
Many people believe that when you become disabled, you receive public benefits. Many disabled people I met at Berkeley lived on Social Security disability benefits and received In-Home Support Services from the state of California for personal attendant care. I had had a job before that fateful backpacking adventure, and that gave me health coverage and disability payments, so I didn’t need public benefits. I also did not need personal attendant care. My law school expenses were covered by the California Department of Rehabilitation. When I graduated from law school, I took a job in Washington, D.C. advocating for disability rights. I was able to choose not to rely on public benefits for basic support.
Now, at age 69, I still work. I live in the Bay Area, where the cost of living is extremely high, and my Social Security retirement benefits plus a very small work-related pension don’t come close to covering my expenses. Unfortunately, our public benefits systems provide funding only to people with disabilities who live in poverty, and my retirement income is too high for eligibility even though it’s too low to live on.
Acquiring a disability early in life did not immunize me from further health crises and new limitations. One night when transferring from my wheelchair to bed, I fell to the floor and twisted my leg, resulting in a hip fracture. My recovery required no weight bearing, and I had relied on my ability to stand for transferring in and out of my wheelchair. During the recovery I lost strength, and I could no longer function without help. I hired personal attendants to help me arise in the morning and go to bed at night.
My modest income disqualifies me from public support to pay for my attendant care. I have never been able to purchase long-term care insurance because of my pre-existing disability. Having personal care attendants is costly, even though I only require one hour of assistance in the morning and one hour at night, along with a few extra hours a week.
Agencies that provide personal care attendants will only provide such services in four-hour blocks of time. In order to get out of bed in the morning and retire in the evening, I would have had to pay for eight hours a day. At rates of over $30 an hour, I couldn’t afford that. I quickly switched from an agency to hiring my own attendants, which has its own challenges when people quit unexpectedly or need sick time off.
Because of my decision to work in lieu of taking public benefits, for which I was automatically eligible due to my spinal cord injury, I have saved the US Treasury 47 years of disability payments. On top of that, I’ve paid taxes. Much of my work has focused on eradicating unnecessary barriers preventing people with disabilities from being able to work. One of my early successes strengthened the law regarding how the federal government treats employees with disabilities. More recently, I’ve been a leader in the movement to make technology accessible for everybody, increasing the likelihood that people with disabilities will work. However, as for our public policy, my choices and contributions are unacknowledged and unrewarded.
We have a public benefits system based on the assumption that if you are “truly” disabled, you can’t work, even though that idea is completely outdated. While many people with disabilities can’t work, plenty of others can, and do work.
Having a disability can be very costly, and disabled people lack the option of cutting back on costs for technology or services that keep us alive and functioning. It’s a harsh reality for me that instead of getting some form of thanks for saving taxpayers money all these years and for paying my share of taxes, I receive nothing. People with disabilities who work should be supported rather than penalized.
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