Sunday, April 1, 2012


For me, April has a special significance I never fully realized until recently.

            In April 1977, when I was 14, I was in a hospital bed in New York, preparing for surgery to correct my severely curved spine.  The scoliosis came from a neuromuscular condition I was born with, a form of spinal muscular atrophy, which made me unable to walk or sit straight. 

            Without adequate muscles, my backbone was collapsing upon itself.  I looked more like a curly headed beach ball than an adolescent boy.

            I didn't know it then, but at the same time as I was lying helplessly in the hospital, disability-rights activists across the country were agitating to rescue me in other ways that would become apparent only years later.  Four years before, the federal government had passed the world's first disability-rights legislation--the Rehabilitation Act of 1973—but it wasn't being enforced.

            When I met some of the survivors of those protests, in researching my book about the movement, I learned that the biggest demonstration occurred in San Francisco (not surprisingly).  Those patriots actually camped out for 25 straight days and nights at the Health, Education and Welfare Department's local headquarters--sleeping in their wheelchairs or on the floor, sharing urinals, catheters, and personal-care attendants, bathing in front of one another with little shame.  Many had come from institutions where they were used to having no privacy anyway.

            I recall feeling a little like that myself, that I had no privacy, spreadeagled in the pediatric orthopedic ward.

            Anyway, these protesters had nothing much to lose and, frankly, nothing else to do.  Most were unemployed or had been banned from mainstream schools.

            I went to a regular school.  My parents had insisted on it, fought for it, in those bad old days before kids with disabilities were fully integrated. 

            Yet I had a lot in common with those protesters.  Like them, I was benefiting from the latest medical treatments, such as my scoliosis surgery, and technological advances like motorized wheelchairs.

            In the end, I came out straighter and taller than ever.  My breathing improved and the strain on my heart eased measurably.  And the activists proved victorious, too!  They got President Carter to sign new regs to enforce equal access.  The deadline was 1980, the very year I started college.  I became a sort of pioneer, a test case, at Harvard University.  So I was a direct and almost immediate beneficiary of the April protests.

            I never knew about these foot soldiers--or should I say wheel, crutch and guide-dog soldiers?--of disability rights until after I'd graduated and begun to ponder my role in society, my roots, as it were.

            What I take away from this saga of unsung heroes is a combination of gratitude and inspiration.  Even the smallest, most overlooked acts of righteous bravery can have profound repercussions.  After all, the regulations they spearheaded became the model for subsequent, more sweeping civil rights for disabled people.  And where would I be today without that?

            So for me April is a time for thanks and remembrance.  For a certain humility mixed with the hope of ever-possible rebirth.