Many years ago I was invited to meet a small group of young people—boys and girls, between 13 and 16 years of age—all with varying problems relating to cerebral palsy. They had monthly meetings with professionals like lawyers, bankers, engineers, artists, and doctors who explained the nature of their professional work and answered questions relating to their expertise. My task was to answer questions about sexual issues.
On my first visit, hands were up in the air, waving to be recognized for questions, even before I had a chance to say hello and we were on a roll for a couple of hours. Some questions were way out there, and I have to smile even as I write this today. One boy asked how long his sperm would live after he died. To this day I’m not sure of the answer. I believe, perhaps, 2 days? I remember another boy’s eagerness; he was unable to talk and his arms and pointing fingers moved uncontrollably in athetoid circles over his Ouija board as he prepared to spell out his question. The leader of the group stood by the boy and loudly announced the letters that he pointed at on the board. The boy’s fingers moved to H - O - W / W - I - L - L / I / P - U - T / M - Y / P - E - N…. Before his finger could move to the obvious next letters, the leader, obviously caught off guard, quickly exclaimed in a sharp voice, “wait, wait,” then put a hand on the boy’s shoulder, and quickly called out to the group, “I’m not sure what […] is getting to but in the meantime […] in the first row has another question.”
This episode came to mind recently when I came across a 1985 article published in the Journal of Allied Health pointing out the need for organized attempts to ensure the sexual habilitation of youngsters with disabling conditions.
The article acknowledged parental confusion about their child’s sexual development and what to do about it. Parents expressed concerns over causing emotional pain and frustration by raising the child’s expectations. They also became resigned to the likelihood that the sexual part of life would not be available to the ill or disabled child in adulthood. The article also recognized the lack of professional health education to assume a supporting role in assisting parents in facilitating sexual development of young persons. Complicating issues cited in the article included the potentially limiting cultural, religious, or moral perspectives and values, and the fact that by and large even we as parents and as professionals in medicine are not sure how to introduce or approach these areas of human experiences, even to our own healthy children.
Between 1975 and 1995 my academic and clinical work was focused on the solutions to sexual and reproductive problems of adult women and men with severe disabilities. As an adult to adult I have listened to, discussed, examined, and tested individual’s and couple’s needs and together we constructed various paths to desired emotional and physical intimacy and, when possible, fulfilled reproductive hopes.
Our contemporary culture recognizes and permits considerable advances in the sexual rehabilitation of adults. I have to admit that reading this over-30-year-old article made me feel discouraged. Not much has changed: the sexual habilitation of children and young persons with chronic illness or physical or mental disability is still not on our social or medical agenda. Ignoring the sexual habilitation needs of children with disabilities cannot be the answer.
—George Szasz, CM, MD
This posting has not been peer reviewed by the BCMJ Editorial Board.