In 1998, I began the journey to find my younger brother Fred.

“Your brother is going away, said my father to me in 1957, letting me know that Fred was to live in the Willowbrook State School for Mentally Retarded Children. “But we will see him every Sunday.” And we did. Those visits let the nurses know that Fred had a family and that it was involved and concerned. But our weekly appearance and Fred’s initial devastation then eventual acceptance when we parted were only a minor reason why my brother is today successfully navigating life in the community, living in a high-functioning group home and participating in a day program without walls. My brother has attributes that were unacknowledged or judged unimportant in the 1950’s. Although the medical profession could not have known that Fred, at four-years-old, had excellent adaptive skills and high emotional intelligence, it didn’t acknowledge that everyone can learn, so professionals didn’t understand early intervention. But where the medical profession and society in general primarily failed was in not knowing that my brother and his peers shared typical people’s desire to be loved—that they were human beings.   

My brother’s disability defined me. Siblings are renowned for their compassion and persistence. Both continue to direct my life. But it wasn’t until our parents died and I became Fred’s guardian that I became incensed because my brother’s talents weren’t being seen or encouraged by the day program serving him or his residence of twenty years. Yet, the professionals were not solely at fault. Because of all those Sunday Willowbrook visits, as soon as I was independent of the family, I skipped visiting. And once I went out-of-state, and then out-of-the-country to college, Fred became an acquaintance, someone I saw at holiday gatherings. So I was unaware of Fred’s abilities until I told him Mom had died and he pointed to the ceiling and said, “I’m next.” His connection to the medical profession was fierce, as he was then undergoing three-hour, three-day-a-week kidney dialysis. But my psychoanalyst wife pointed out the importance of his abstract reasoning. “Fred is capable of a great deal,” she said. And I had a mission—to free my brother from low expectations.

I began reading about intellectual disabilities, starting with Gunnar Dybwad's Challenges in Mental Retardation (1964) and Rothman and Rothman’s The Willowbrook Wars (1984). I was drinking in all that shaped my brother’s life… my parents’ lives… and mine. I took special notice of films and books about, by or including people with disabilities. I began writing about Fred, our developing relationship and our shared efforts to improve the quality of his life. Fred saw the importance of expressing his wishes. And I, unintentionally, became a disability advocate.

My new awareness of disability led to my establishing and, for three years, advising a chapter of Anthony K. Shriver’s Best Buddies at the college where I worked. Fred and I presented his story to Best Buddies' Annual International Leadership Conferences and several northeast colleges. I began assigning disability related readings to students in my First-year writing courses. These assignments developed into student research visits to people having disabilities and has evolved into my experiential course in partnership with a community agency in which the agency’s participants join my students to create a digital story about the person with the disability.

But I knew something was missing—if I was to continue teaching about disability and advocating, I wanted information to augment my personal experience and unguided readings. Visiting Mariette Bates at SPS to discuss a disability issue I was privately researching, it suddenly dawned on me that I had found my home. When I shared my revelation, Mariette said, “Come. Apply.” And I did.

The university in which I am employed appreciates my creating better student citizens through service to the community, and I’m pleased to have earned among my classmates and professors so many well-informed Disability Studies colleagues. But most important, I have found Fred.

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