When Amy Walker was going to school in Watseka, she noticed something that struck her as odd.
She never saw any of the faces from special ed study hall in health class for units on reproductive systems and sexuality. Walker’s disability, cerebral palsy, was such that educators deemed her “smart enough” to handle information about her own sexuality, she surmises. It still makes her angry.
“It’s not about being smart,” Walker says. “It’s about being human.”
Approaching issues of sexuality and kids with disabilities is a particularly sticky wicket, say people who have been focusing on such matters for decades.
“We take these myths about people with disabilities, based on oppressive labels and segregation, and filter them through our religious and cultural attitudes about sex-and we end up denying people their human birthright to love and be loved,” says Orieda Horn Anderson, grand dame of the birds, bees and special needs.
Walker, now 30, heard things that bothered her even more as she grew older. Friends who live in group homes talk about staffers labeling their sexual feelings “inappropriate.” Sex is against house rules in most places where those with disabilities live, and guardians routinely throw a wet towel on romantic relationships.
When it comes to sexual misconceptions, Anderson, at 88, has heard them all. People bring kids and grown-ups with developmental disabilities from all around the country to sit at her kitchen table in Moline and talk about sex. Some she’s worked with think that if a baby comes from a cabbage patch, then a girl doesn’t have to worry about getting pregnant as long as she steers clear of the garden and the produce aisle.
“They don’t think that because they’re stupid or child-like,” Anderson says. “They think that because that’s all they’ve been told.”
Anderson designed the anatomically correct “Effie dolls” and had hundreds of the cloth figures shipped to special-needs classes all over the world. She also co-authored several books on the subject with Shirley Paceley, of Blue Tower Training in Decatur, which provides counseling, advocacy and support services to people with disabilities.
Paceley has heard all the fables surrounding people with special needs, but the one that bugs her the most is the one about a child’s mind in an adult body.
“You can’t be a grown-up and have a child’s mind,” Paceley says. “Regardless of your IQ, you can’t live to be 35 and be a 3-year-old.”
One mother had her daughter sterilized because she didn’t think the teen could emotionally handle the ordeal of menstruation, recalls Judith O’Connell, assistive technology specialist for Trinity Services, a large-scale operation serving more than 500 people with special needs in Chicago, Joliet and several other suburbs.
“It was jaw-dropping,” O’Connell says. “But horrid as it sounds, the mother was coming from a place of love. She truly cared for her daughter and wanted to protect her.”
Hard questions, easy answers
As much of a mish-mash as matters of sexuality and disability might seem, the solutions are refreshingly simple.
Just how should you approach the subject of sex with children who have disabilities or developmental delays? The same as you would any other child, the experts say: Honestly, directly and early.
“Actually, the reproductive system is one of the healthiest in the body for people with the vast majority of conditions,” Anderson says.
From the youngest ages, call the body parts by their correct anatomical names, sex counselors say. Create an open environment where kids, just like any other young person, can come with questions about things they may be hearing or feeling. This covers maturing body parts, physical urges, confusing signals from people around them and what to expect at the doctor’s office.
“If a boy has a wet dream or experiences an erection in math class, he deserves to know what is going on and how to deal with what is happening with his body,” O’Connell says.
There’s a whole epic of misguided mythology, the pros explain.
“You see parents dealing with the guilt of bearing a child with disabilities and they want to keep them in a state of innocence, an eternal child,” Anderson says.
In her training for staffers at the University of Chicago, O’Connell uses a program called Circles that helps people understand how expressing their range of friendly-to-sexual feelings is appropriate in varying levels of privacy.
One of the most urgent reasons for talking about sex with children with special needs is to give them tools they need to protect themselves from sexual abuse. Experts say from 67 to as high as 90 percent of people with developmental disabilities are sexually abused at some time in their life, according to figures in Anderson and Paceley’s book Safe Beginnings.
The women advocate not only fostering a sense of boundaries, but also cultivating children’s personal power. That means giving them the power to make choices in all different areas of their lives.
“If they can’t say no to peas on their plate, how are they going to find the courage to say no to a penis?” Paceley asks.
The consequences of sexual ignorance can come haunting in nightmares that most parents could never imagine. At her kitchen table, Anderson digs for the roots of extreme and bizarre behaviors in kids whose parents bring them from all across the country. Usually, she says, she finds sexual abuse at the bottom of confounding conduct.
But that’s only part of Anderson’s mission. The other piece is advocating for people with developmental disabilities who wind up in criminal systems for acting on sexual impulses that turned out to be not only inappropriate but illegal.
Better to have loved …
Walker works helping other people with disabilities get in touch with their power and their life dreams. Those dreams are just the same as everybody else’s, she says. They want to be in charge of their own destiny, to love and be loved.
Walker, who still struggles to overcome messages that sex is dirty that were planted in her psyche as a child, says she isn’t in a romantic relationship right now but is looking.
Quoting the Bard, Walker repeats the time-worn words to sum up a lesson that resonates across the spectrum of intelligence quotients and degrees of development.
“Better to have loved and lost,” she says, “than never to have loved at all.”