Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

Sex. Sexuality. Sexual identity. These are words that can make people squirm. When you add “and individuals with disabilities,” people are often perplexed. Why? Society doesn’t think of people with disabilities as sexual.

Growing up with two parents, both of whom had disabilities, I never thought that there was anything weird about sex and disability, or disability and dating. As I met people outside the family and engaged in conversations with other youth and young adults with disabilities, I quickly learned that sex was a taboo subject. Having sessions about sex and relationships at a conference for youth leaders with disabilities caused a stir among everyone but the youth. “We don’t really need to talk about that” was the response of some support personnel, and parents said things like, “My son/daughter doesn’t need to be exposed to that!”

Generations X and Y have grown up with the cliché, “Knowledge is power!” When looking at the five identified areas of youth development/youth leadership in which all youth need information, thriving is one of them (Pittman & Cahill, 1991). It’s especially critical to youth with disabilities. Thriving includes mental and physical health, preventing secondary conditions, and maintaining overall well-being. Unfortunately, most people do not think about thriving as including dating, healthy relationships, sex, and forming healthy sexual identities.

Myths About Disability and Sex

Some common myths about people with disabilities and sex (Kaufmann, Silverberg & Odette, 2003) say that people living with disabilities and chronic illnesses:

• Are not sexual.
• Are not desirable.
• Can’t have “real” sex.
• Are pathetic choices for partners.
• Have more important things to worry about than sex.
• Are not sexually adventurous/are perverts.
• Shouldn’t have sex if they live in institutions, group homes, or with parents.
• Don’t get sexually assaulted.
• Don’t need sex education.

These myths are why students with disabilities are kept out of sex education classes and why they are not taught self-defense, and these myths perpetuate the idea that youth with disabilities are less than or different than other youth.

What Parents and Families Can Do?

Parents and family members can support healthy sexual development of youth with disabilities by taking the POWER Approach, developed by the National Consortium on Leadership and Disability for Youth. Its components are Preparation, Open Attitudes, Where Are You?, Exposure, and Reality Check:

• Prepare yourself and your youth. Having youth-friendly information available can help the young person in your life make healthy and positive choices. Preparation also means giving them the whole picture and including information that may make you uncomfortable. If you need help with a topic, you can find an expert. Many counties, schools, and clinics have health professionals and sexuality educators available to answer questions from young people and parents.
• Open attitudes. Family is the first place where we learn expectations for our own lives and how to have relationships with others. Families need to have an informed, open, and supportive relationship with their youth. This means being comfortable talking about disability as a normal function of life, and that life itself includes sex, dating, and relationships.
• Where are you? Present! An informed and involved family is a prepared family. Know who your young person hangs out with. Know where they go. Know who they have problems with. If you don’t know, ask. Youth may not want to share these sorts of things, but make them aware that you’re asking because you’re concerned for their well-being.
• Exposure. Youth with disabilities need to see and interact with people with the same and different disabilities from a young age and be able to see them in relationships, as parents, as professionals. In addition, involving youth with disabilities in youth development and youth leadership programs, both disability specific and general youth programs, helps them develop healthy relationships and healthy self-images.
• Reality check. Family members need to remember that first and foremost youth with disabilities are youth. They are going to develop crushes, they are going to experiment with dating and sexual behavior, they are going to hang out with other kids you may or may not like. Do not treat youth differently or have different expectations for them because they have disabilities. Rather be prepared to do the research and have frank (and even uncomfortable) conversations with them.