Not Just Self-Advocates, but Sexual Self-Advocates | Organization for Autism Research

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When we think of the self-advocacy movement, we think of people with disabilities being in control of their lives, making decisions, and directing their life story. However, many self-advocates say that they don’t get the same support regarding sexuality and relationships as they do when they say they want to get a job or to live on their own. Why is this more difficult?

After all, as a society, we generally believe that most neurotypical individuals will be in a sexual relationship at some point. We don’t, it seems, expect the same for neurodivergent individuals who must deal with misconceptions about their sexuality, including that they are not sexual or cannot have a healthy sexual relationship. These misconceptions are often the source for the discomfort some caregivers and educators have when a self-advocate wants to talk about sex or be in a relationship. They get nervous or they brush off the questions that self-advocates ask. They may worry that sexuality education will give disabled people “ideas” about having sex. Questions about sexuality education, relationships, and having a partner are ignored. If they do respond, it’s often with answers like “you don’t need to be in a relationship” or “you will be taken advantage of.” 

Instead of brushing off those questions and conversations, those of us who care for self-advocates, who work with or are in relationship to them, need to listen. When I asked self-advocates why they want and need sexuality education, this is what they said:

  • “So we can learn to have healthy relationships”
  • “So we aren’t lonely”
  • “So we are able to make informed choices”
  • “So we can pick the right person”
  • “For help with the toughest part of the relationship, making it last”
  • “So we can be safe”
  • “Because we all have desires/needs and that’s okay”
  • “So that people know their rights”
  • “So we can be sexual self-advocates, not just self-advocates”

According to Green Mountain Self Advocates, a Vermont self-advocacy organization run by people with developmental disabilities, being a sexual self-advocate means: 

  • Feeling good about yourself
  • Feeling comfortable meeting people, flirting, and asking somebody to dance
  • Feeling accepted for who you are as a sexual person, however you identify your sexuality
  • Feeling free to speak up to your partner and tell them what you want and don’t want in a relationship
  • Knowing your rights and responsibilities
  • Not letting people use you or take advantage of you, in any situation, including a romantic or sexual one
  • Understanding how to deal with stalkers and harassment
  • Knowing about birth control and safer sex
  • Learning new things and deciding what is right and safe for you
  • Asking and getting privacy
  • Getting married

Self-advocates are saying it loud and clear: “We want and need sexuality education and to learn how to be sexual (and relationship) self-advocates. We want our questions answered. We want a partner and to be treated like adults. We want to be respected as sexual beings. In other words, we wanted to be treated like everyone else is.” Now that they have spoken, it is time for more of us to listen to these voices!

Katherine McLaughlin, M.Ed., is a national expert and trains individuals, staff, and parents on sexuality and developmental disabilities. She teaches sexuality education to people with developmental disabilities and trains them to be peer sexuality educators. She is the author of an agency and school curriculum, “Sexuality Education for People with Developmental Disabilities.” She has developed two online courses: “Developmental Disability and Sexuality 101” for professionals and “Talking to Your Kids: Developmental Disabilities and Sexuality” for parents. She has spent her career trying to elevate the status of all people, which is why the name of her growing company is Elevatus Training.

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