As a freshman in high school, I had a bit part in a community-theater production of Arthur Miller's "The Crucible." With John Proctor raging against the trial that would convict him of witchcraft, Judge Danforth was supposed to exclaim, "Do you doubt my probity?" But instead, the roly-poly adolescent playing him yelled, "Do you doubt my puberty?" which elicited tremendous guffaws from the audience. The kid's puberty was indeed in doubt. Baby fat and a squeaky voice made it almost impossible to accept the high seriousness of the drama. With one slip, this famous American tragedy turned tragically comic. Even at the end of the play, as Proctor was being hanged and as Miller's implied critique of McCarthyism resounded, some in the audience were still guffawing.
I thought of this gaffe when my 16-year-old son, a sophomore with autism, asked on his talking computer, "Will I ever get to have sex?" "Yes," my wife and I responded, committed to the creative problem solving we'd practiced from the moment our adopted son arrived in diapers and carrying the label of profound mental retardation at the age of 6. That little boy is now a young man: He's 5-foot-10; he's shaving. He's also a straight-A, honor-roll student at our local high school. He has appeared on CNN with Dr. Sanjay Gupta and given speeches all over the country on the importance of self-determination. What's a little sex compared to the obstacles he's already overcome? I mused.
In effect, my son was asking, "Do you doubt my puberty?" But for him, as for so many other people with cognitive differences, the issue isn't humorous. When you consider the shame that people attach to disability generally and the near hysteria that greets disabled sex in particular, my son's concern shouldn't surprise anyone. Just two years ago, America learned that Arthur Miller fathered a boy with Down syndrome, a boy he abandoned at an institution and never told anyone about. Only at the end of his life did this defender of the politically oppressed bother to visit his son. When he did, he was reportedly shocked that the 40-year-old Daniel had a job and lived largely independently.
A year earlier, the media reported on a girl whose parents had authorized the removal of her breast buds and uterus and the injection of high doses of estrogen to prevent puberty and keep her small. The parents thought it would be easier to care for Ashley, whom they dubbed the "Pillow Angel," when she was older, and a hospital ethics board approved this "growth attenuation" for "static encephalopathy." The hospital, however, violated state law by not submitting the procedure to court review. The public uproar was tremendous, and one of Ashley's two doctors ended up committing suicide.
Many supported the procedure, but an adult woman with "static encephalopathy," who communicates by pointing at a vertical letter board, criticized the "readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement." As the woman, Anne McDonald, explained, the presumption of a lack of intelligence governed their attitudes.
On the whole, we've come a long way from the incarceration, sterilization, and eugenics of the 20th century, but not far enough. The dream of full participation in life's richness for those with cognitive differences remains just that: a dream. Who of us doesn't want a job, a home and friends? Who of us doesn't want a share of that sublime and affirming activity we call sex (or what my son at age 12 memorably termed "great feelings")? We need to stop behaving like hysterical Puritans and provide people with disabilities with rigorous sex education. Not only that but opportunities, even trained sexual facilitators, if need be. Kids with disabilities grow up. Let them look forward to what the rest of us look forward to. We can do this responsibly, ethically.
A journalist covering the Arthur Miller story suggested that in the forsaken relationship with Daniel, Miller was "sitting on his greatest unwritten play." My own son just received a "Division I" rating in the state theater competition with a work about autism that he wrote and helped to direct. It's called "Plotting Hope," and I like to think of it as filling a void that Miller simply couldn't imagine.
Ralph James Savarese, Ph.D.
Associate Professor of English
This is a modified version of an article originally published in 2009 with the title, "Guest column: A question for all: Do you doubt my puberty?" in the Des Moines Register.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.