August 7, 2012

We Are Family: Sex and Developmental Disabilities

This past weekend, I took my four-year-old to a Summer Fun Day Picnic at Laura Baker Services Association (LBSA), a local school and home of many children and adults with developmental disabilities where my husband works as the family support services director and volunteer coordinator. This past spring, we offered a workshop to his colleagues on sex and developmental disabilities, and we've been asked to organize another one this fall, specifically to share curriculum and ideas with staff on how to teach clients about their bodies and sexuality.

In fact, I don't have too much experience interacting with people with developmental disabilities, but I believe firmly in their sexual rights. Sadly, all too many stereotypes linger around people with developmental disabilities, denying them ownership of their bodies and a healthy relationship with their sexuality. As is commonly reported in research on this topic, the fact that individuals who have developmental disabilities are also sexual beings is often overlooked by those who care for them, including guardians, support staff and even healthcare professionals.

I am grateful that my husband has colleagues who agree with us on the importance of educating LBSA's clients about their bodies and sexuality and the staff who works with them on how to do this. At the Summer Fun Day Picnic, I was moved by all the positive physical interaction I witnessed between staff and clients who may in the past have been deprived such positive touch.

Rather than such positive and respectful touch, many people with developmental disabilities are victims of abuse and neglect. A staggering 83% of women and 32% of men with developmental disabilities are sexually abused during their lifetime. Sexual abuse is the most common cause of sex-related problems for persons with developmental disabilities. At the picnic, I couldn't help wonder who among the clients might have experienced such abuse. My eyes lingered on the father of an adult female client. A dour looking elderly man, I was searching for a trace of kindness and affection in the way he escorted his daughter at the picnic.

But overall, the atmosphere was overwhelmingly positive — in fact; celebratory. One of those amazing late summer days, the air mild and the sky blue, it felt like an oasis from the senseless rush of modern living. Time stood still as people lingered, making music, drumming, playing games, swinging, going for a horse-drawn wagon ride, and feasting on picnic food and root bear floats. A young couple — clients — couldn't get their arms off each other as they strolled around in the gardens; another one would dance and flirt and pretend to make music together in front of the band playing.

Really, it was a day of clients, staff, friends, family and community members celebrating that we truly are all family. Going on a carriage ride with a group of clients and staff, I couldn't help but choke up as a young male client sang in his low cracked voice all the verses of "It's a wonderful world." And when some clients and staff got up to gesticulate to the Village People's song "YMCA," I just felt such an abundant sense of deep joy and gratitude to have the opportunity to be included in this community and invited to contribute to it.

In September, I'm heading over to Norway where I'll be researching how people with developmental disabilities and the people who work with them there are educated about sex. A world pioneer in introducing human sexuality education in the public schools, Norway has also gained international reputation for how it empowers people with developmental disabilities to run their own lives on their own terms, including sexually. I look forward to picking up concrete tools we could implement in a US context to empower people with developmental disabilities.

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