This is the first of several posts containing portions of my feasibility study looking at the need for an independent sexuality and social skills agency serving teens and adults with ID/DD and their supporters.
In 2000, Dominic Davies, a UK based sex therapist focusing in the training of professionals to provide care and support to clients of the sexual minority, presented what could be viewed as both a best practices and biggest problems overview of creating sexuality education programs. In this presentation, he listed three reasons for the lack of education for people with disabilities in the area of sexuality:
- Lack of physical and financial access to where the rest of society work and play has meant we are disadvantaged in opportunities to meet people and acquire sexual and relationship skills through practice and normal socialization processes. Life in residential institutions or with our families is often policed to ensure we don’t develop intimate relationships.
- Lack of positive role models and low self-esteem generated by shame about our bodies from the messages we receive from those around us, can create psychological barriers as great as any in the built environment to our believing in our capacity to participate in sexual relationships. Many disabled people have never experienced loving sensual touch. Our experience of touch is being poked and prodded in having our most basic personal hygiene needs met. We may not know what kinds of touch feel good on our differently formed bodies.
- We are often excluded from sex education lessons, rather than given some education geared to our specific needs and situations. We may need for example to learn about specific positions which would enable us to give and receive sexual pleasure, ways of managing pain and spasm, how to deal with the physical adaptations which enable us to function in the world but which may become obstacles in sexual relationships.” (Davies 189)
This list encompasses the universal reasons people with disabilities don’t receive sexuality and social skills education.
Davies goes on to outline the ways education can be provided on a multilevel basis: agency-wide, individual, and professional. He proposes that sexuality education be taught by teams of people with disabilities and trained educators, preferable representing a breadth of gender and sexual identities. On the individual basis, he leaves it at the discretion of people with disabilities to ask for help which leaves out a large part of the ID/DD community, who may not be aware they are lacking knowledge in the first place.
The aspect of his “How” section that rings truest with me is the call for more “module-based” professional education. While there are some academic offerings in either intellectual disability or sexuality, there are none that specialize in both, or even make a connection between the two.
Even though I have been searching for them, at UMASS, HCC and Salem State, I have only encountered one course that even talks about the sexuality component in ID, or that people with disabilities have sexuality. This was in a course looking at ID and Mental Health dual diagnosis, and it was offered as an explanation of some of the more challenging behavior issues—right between feeding problems and constipation.
One of the major roadblocks for sexuality education is funding, especially in this economic climate of slashed budgets and chronic understaffing. Sexuality education is generally seen as a one-time solution to a problem, rather than as an ongoing approach to preventing them. This approach is irresponsible at best. Elizabeth Canfield, a sexuality educator and lecturer, made an apt analogy:
“I’ve often wondered what it would be like if we taught young people swimming in the same way we teach sexuality. If we told them that swimming was an important adult activity, one that they will all have to be skilled at when they grow up, but we never talked with them about it. We never showed them the pool. We just allowed them to stand outside closed doors and listen to all the splashing. Occasionally, they might catch a glimpse of partially clothed people going in and out of the door to the pool and maybe they’d find a hidden book on the art of swimming, but when they asked a question about how swimming felt or what it was about they would be greeted with blank or embarrassed looks (or told they weren’t old enough to know.)
Suddenly, when they turned 18, we would fling open the doors to the pool and they would jump in. Miraculously some might learn to tread water, but many would drown.” (PPIN)
In this case, rather than drowning, people with disabilities are being victimized by abusers, contracting STIs and being labeled as sex offenders, in many cases because they lack the information needed to avoid these outcomes.