“I decided long ago that if I’m going to like myself, I have to like the disability that has contributed to who I am. Today, my encroaching decrepitude is frequently a source of emotional strength, a motivator to keep fighting, to exercise my full abilities in whatever way possible.”
– Ben Mattlin

Just after Rosh Hashana, the following article appeared in the New York Time Opinion Section. It is a stunningly emotional piece of sadness, struggle and perseverance. A Disable Life is Life Worth Living Full Article

In midsummer, I learned of the death of Laurie Hoirup, a prominent 60-year-old disability rights advocate in California. Laurie drowned in the Sacramento River after a July 4 celebration. She was well-loved and accomplished. She’d served as a chief deputy director of the State Council on Developmental Disabilities for five years and wrote books about living with a disability.

Laurie’s sudden and tragic death was not directly caused by her S.M.A., but it is a stark reminder of the vulnerability of disabled lives. She was deboarding a pleasure boat when the ramp to the dock shifted. The weight of her motorized wheelchair — and the fact that she was strapped into it — pulled her down into the water too rapidly for rescue.

Laurie’s death had extra significance for me, a 53-year-old husband and father of two, in part because we shared a diagnosis: spinal muscular atrophy. Read Full Article