Submitted by by Joan M. Fenske, R.N., M.S., D.N.Sc.
“Does Ken express himself sexually?”
The Social Worker held his pen aloft, waiting for an answer. We were on page five of Kenneth’s intake questionnaire. Two hours of a scheduled four hour interview had elapsed. My mouth opened, staying still and motionless. 18 years of interviews, completing questionnaires and submitting forms had not prepared me for this question. I had no answer.
Noticing my stupefied expression, the Social Worker shuffled his papers until he found the facilities’ Patient Bill of Rights.
“After discussing Kenneth’s situation, and the care we expect to provide him, you’ll need to indicate by your signature we have covered each item. Respecting and acknowledging his sexuality is one of his rights”.
I heard his speech and nodded my understanding. Still no words came. What sexuality? I was still taking Kenneth to visit Santa Claus. Knowing the principle of “age appropriate” as it related to individuals with developmental disabilities, I’d never adhered to it. Indeed, I insisted an infant’s busy box be placed on the side rails of Kenneth’s bed. Kenneth enjoyed manipulating the buttons and I saw no reason to deny him this pleasure, no matter experts said this toy was not age appropriate. It was quite a leap forward to the Social Worker’s age appropriate question of Kenneth’s sexuality. Kenneth was 18 years of age.
I was speechless. I could not get my mind around the notion of Kenneth’s sexuality.
Avoiding the question, my curiosity got the best of me. My only thought was of Bob and how intrigued he’d be by the Social Worker’s question.
“What are Ken’s options?” I naively inquired.
Never wanting to deny Kenneth opportunities for happiness, I wanted to learn about the possibilities this subject suggested. Realizing Kenneth, on occasion, had erections while diapering him, I realized how little we’d noticed his budding manhood. We knew he had favorites among his caretakers giving his best smile when they were young, vivacious, and with long blond hair. Confronted with Ken’s sexual potential, I felt cornered. Although trying to avoid this question, I could not deny its importance. I shuddered. An absurd notion popped into my mind. His father never spoke to him about sex, I wanted to say.
The Social Worker indicated the seriousness of this matter by putting down his pen, sliding his chair away from his desk. Obviously, I was about to be educated.
“Kenneth is residing on Emparen, a unit of young adults functioning at his skill level. For young men who are mobile, and are so inclined, we offer privacy for masturbation. Young women are prescribed birth control medication to prevent unwarranted pregnancies. Being pregnant endangers their health. Young women with developmental disabilities mentally function beneath their chronological age, often at a three or four-year-age level. They don’t grasp the significance of their pregnant state. At times, young men and women become attracted to each other and form alliances. Their relationship is supervised and, as appropriate, they are given suitable privacy for intimacy. More often than not, couples are easily distracted from pursuing any physical contact. Being developmentally disabled, thinking in childlike terms, most are unable to conceptualize sexual intercourse and act upon that knowledge. All staff, especially Psychiatric Technicians, are educated to care for individuals who may or may not become sexually active. Psych Techs, learning from professional past experience, exercise respect, diligence and good judgment as they monitor each client’s chosen expression of sexuality”.
I’m certainly happy to know that,” I responded. I was numb with shock.
Kenneth could not walk, talk, sit or stand. How did this information apply to Kenneth?
“Will his potential for sexual expression be monitored just as his medication, diet, blood pressure and bowel care?”, I asked.
“Just like a regular guy”, replied the Social Worker.
It was curious how I assumed Kenneth was asexual. I believed what I wanted to believe. I routinely projected onto Kenneth the personality traits I decided he must have no matter whether or not Kenneth manifested such traits or affirmed my portrayal of his persona. I had not imbued him with sexuality. Was this denial on my part? Or was this my not-so-subtle way of keeping Kenneth infantile? Did this reflect societies’ tendency to objectify individuals with disabilities?
Most likely, my actions represented all of the above. Remembering a ridiculous conversation with Bob, I’d adamantly objected to the notion Kenneth was gay.
The idea of individuals with developmental disabilities becoming sexually active was disconcerting. Imagine having a daughter with disabilities, with limited cognitive comprehension, how could you protect her from tragic sexual encounters? Past abuses were common as institutionalized women were sterilized without consideration of their basic human rights. Historically, many states initiated sterilization procedures as the only way to control unwanted pregnancies among individuals who were labeled mentally incompetent. At that time, birth control medication was a thing of the future, not yet developed. No other options were available.
In response to rampant human rights abuses, state law now forbids sterilization of individuals with developmental disabilities. On occasion, young women with disabilities, no matter their age, living at home, under parental supervision, may be diagnosed with gynecological conditions endangering their life. Even under these circumstances, a formal court order and legal review is required before medical intervention may be initiated.
Thinking of women with disabilities, struggling with their menses, sexual expression and vulnerability, I wondered how they and their families managed. I’d not discovered any literature covering this subject. Such information passed only by word of mouth, on the job, professional to professional, on a need to know basis, just as the Social Worker did during our interview.
Suddenly, terror seized me. I shivered with revulsion. Individuals with disabilities, with limited cognitive ability, who express their sexuality, are at risk for rape. Who preys upon this vulnerable population? Kenneth was as safe as he could be. His caretakers were state licensed professionals. His abode was staffed, “24/7”, with a variety of people busily coming and going. Unwarranted behavior would immediately be noticed and reported.
Or so I hoped. I mentally reviewed the afternoon’s shift as unsupervised janitors completed their duties room by room. I thought about the night’s shift when lack of staff meant using unknown staff assigned from the communities’ registry.
“Don’t go there!” Words spoken by Developmental Center staff flooded back into my mind. Their skilled counsel provided mental health strategies meant to resolve fearful moments conjured up at three in the morning.
“You unnecessarily scare yourself with your imagination. Although these are real concerns, take Kenneth’s care a day at a time. Don’t speculate about future possibilities. Participate actively in Ken’s care, know staff members by name, and regularly visit him. Caretakers will respond knowing Kenneth’s a valued member of your family. They’ll perceive him as a significant individual of importance. They’ll all know consequences will be immediate if he is harmed. They’ll pay attention to his care”.
Quieting my mind, finding courage to consider thoughts about Kenneth’s sexuality, I turned these new insights over to my higher power. Leaving Kenneth, I drove home. Only by hanging out with Kenneth, getting to know his daily routine and those assigned to his care, would I possess peace of mind. My higher power had been forewarned, so I could tap into my reservoir of trust.
I was relieved circumstances had rendered our son with developmental disabilities relatively free from these worries. Being unable to talk, walk, sit or stand, he would not be a likely candidate for victimization. I smiled remembering how vicious his bite was. His devious ways of personal interaction and communication would protect him.
Eighteen years of age, his expression of sexuality now would be monitored. Kenneth’s personhood had a new domain, a dimension I had not foreseen.
Within a four hour interview session, Kenneth passed from child to man, at least in my heart.