Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities
Sexuality and Healthy Relationships:
Self-Advocates Taking the Lead
People with intellectual and/or developmental disabilities (IDD) are often thought of as not sexual and not needing any information or skills about sexuality and healthy relationships. So, people with IDD are often removed from the mainstream health class during the sexuality unit, or parents and support providers tell them to stop asking questions or tell them, “This isn’t for you.” When we ask people with disabilities about this belief, they often respond with “that’s not true, we are just like everyone else.”
To create an empowerment series that would show people with IDD as sexual beings, the New York Office for People With Developmental Disabilities (OPWDD) partnered with Elevatus Training. The partnership worked with the Self-Advocates Association of New York State (SANYS) and the Institute on Community Integration at the University of Minnesota, to create four videos using the “Nothing About Us Without Us” model. Self-advocates are the speakers in these videos, providing narration and sharing their perspectives on this topic.
The series included ideas from Green Mountain Self-Advocates, an advocacy organization that empowers self-advocates to educate peers to take control of their lives, make decisions, solve problems, and speak for themselves. GMSA creates plain-language resources about all aspects of life for people with disabilities. Some of GMSA’s key messages about sexual self-advocacy include the importance of feeling good about yourself and speaking up to potential partners about what you want and don’t want; being free to express your sexuality and gender identities; knowing your rights and responsibilities; knowing how to deal with sexual pressure or harassment; and having access to information about sex, marriage, and relationships that you can understand.
Elevatus’ Katherine McLaughlin, right, works on the empowerment series with Gwen Squire, an advocacy support professional.
The first video in the empowerment series, titled “Sexuality and People with Intellectual/Developmental Disabilities,” discusses the myths about people with disabilities and suggests that we change our thinking about people with IDD. The second video is titled “Sexual Self-Advocacy.” This video describes what sexual self-advocacy means and uses quotes from self-advocates on what sexual self-advocacy means to them. The third video, “Sexual Feelings and Relationships,” addresses choices in relationships and uses self-advocate voices to share advice about sexual relationships. The fourth video is “Consent and Sexual Relationships.” It speaks to the need to express what you want and don’t want in not only your sexual relationships, but also in any kind of relationship, such as relationships with family members, support staff, friends, and others. The self-advocates in the videos also offer advice on how to say no when it isn’t easy. The main message of this empowerment series is that your body is your body, your life is your life, and you get to decide what you want and don’t want in your relationships. Most importantly, this series says that your needs matter as much as anyone else’s needs.
The messages in these videos are supportive, encouraging, and empowering:
- Everyone is a sexual being, including people with disabilities.
- Being a sexual being does not mean you are having sex; it means you have a sexuality.
- Sexual feelings are healthy and normal, and not having sexual feelings is healthy and normal.
- There are many ways to be in a sexual relationship. Being single is always an option.
- It’s ok to say “yes” and it is ok to say “no.” Even if saying “no” hurts a person’s feelings, what you want for yourself matters more.
- It is your body and your life and you get to decide what is right for you.
People with disabilities are saying it loud and clear: we want and need sexuality and healthy relationship education. We want our questions answered. We want sexuality education classes and information. We want partners and to be treated like adults. We want our gender identities and sexual orientations affirmed and honored, whether we are gay, lesbian, straight, bisexual, pansexual, transgender, queer, cisgender, intersex, asexual, or anything else. We want to be respected as sexual beings. These self-advocate empowerment videos echo these requests. These videos will be released this fall and can be found on the New York Office for People with Developmental Disabilities website.
As a person with IDD, what can you do to become a strong, healthy, and happy sexual self-advocate? For those in a supportive role, how can you support others in becoming strong, healthy, and happy sexual self-advocates? These questions are for you and your support team to explore in working towards being a strong sexual self-advocate. For self-advocates, maybe your next step is to take a sexuality education class or speak with your parents about wanting to date. For those in a support role, maybe your next step is to bring up the topic of sexuality and healthy relationships with those you support. As a parent, your next step could be to watch one of the videos with your child as a tool for discussion.
We are all learning how to be comfortable with an uncomfortable topic, but it can be done. Many people I have worked with say, “I was very nervous to talk about these topics, but it wasn’t as difficult as I thought it would be,” and, “The more I discussed the topic, the more comfortable I became.” Find a place to start and dive in. You’ve got this!!