John Summers’s thoughtful essay (“What my autistic son’s cold cheeseburgers taught me about bureaucracy,” Ideas, May 28) struck several nerves for me. I have encountered many bureaucratic roadblocks during the life of my 44-year-old son, who has Down syndrome, yet none as ridiculous as what Summers’s then-7-year-old Misha encountered. All he needed was someone who would disrupt the system and use the microwave that was in his summer school autism classroom so that he wouldn’t go hungry. A cold cheeseburger is not my idea of lunch.
However, I took issue with Summers’s statement that “a half century ago, findings from the social study of autism helped to close the state schools and asylums.” As a former deputy superintendent of what was then the Fernald State School, I can attest that there were a number of factors at work. From “Christmas in Purgatory: A Photographic Essay on Mental Retardation” in the mid-1960s to Geraldo Rivera’s 1972 ABC expose of the scathing conditions at Willowbrook State School, the public got to see the horrors being inflicted upon children and adults. Here in Massachusetts, in 1973, Judge Joseph L. Tauro made an unannounced visit to the Belchertown State School as a part of a lawsuit by families and saw deplorable conditions that he said felt “like getting punched in the stomach for nine straight hours.”
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It was these images and lawsuits, the ferocious will of families, advocates, and allies in government, and massive amounts of public funding that put to rest the notion that people with intellectual disabilities and autism needed to be separated and abandoned from our communities.
In the process, we have been pulled to protect people with disabilities, and too often, policies, procedures, and regulations are established, sometimes by the well-intentioned, that hinder growth and lack common sense. Such was the case with Misha’s cold cheeseburger.
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Jo Ann Simons
President and CEO
Northeast Arc
Danvers
