Living on the fringes of society as a person with a disability

Today is Blog Action Day and the theme is inequality.

I have devoted a good chunk of my professional life to advocacy for disabled people. I’ve submitted recommendations for revisions of the IDEA (Individuals with Disabilities in Education Act) in the US, served as co-chair of the Consortium for People with Disabilities Prevention Task Force, co-lead a coalition to save a $2.5 million program for children with disabilities, and spoken publicly at San Francisco City Hall about the need for better services for people with disabilities and aging adults.

My heart was fully engaged in all of those professional activities. I know firsthand what it is like to be a disabled person.

I am dismayed by the lack of progress on disability issues in the last decade. And it is not just in the US, my home country, that has failed in bringing about meaningful progress for disabled people.

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Determined to enjoy life

This past week my father (who loves surfing) visited me and told me an inspiring story about a competitive surfer, Jesse Billauer, who became a quadraplegic after his head slammed into a sandbar during a surfing competition. He cannot move his legs and his arms have only limited capacity for motion. This surfer was not about to give up surfing though. He went back to the waves in the best way he could, lying on board on his front side and pushing himself up. And that must have been an incredibly life-affirming experience, but he did not stop there. He started the Life Rolls On Foundation, a subsidiary of the Christopher and Dana Reeve Foundation, and made it possible for many people with spinal cord injuries to try surfing or get back on the board. You can watch the documentary trailer of Jesse’s life here:

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