ANCOR Connect 2024: The Power of We
“I want to get married”
My first few years after graduate school, I worked for a Center for Independent Living in Raleigh, North Carolina. I acted as a Program Coordinator for our youth programs, serving individuals with disabilities from ages 15 to 30. Part of my work included helping young people with disabilities create and achieve their independent living goals, whether they be focused on education, employment, or just basic life skills. Often those goals could be personal, such as finding someone to fill their needs for a relationship.
One such young person, Adam*, came to my office and had one goal and one goal only: To get married. He was about 27 years old, and had a mild intellectual disability and speech disability. He spoke with a slight slur, but was very clear in his communication: He wanted to meet a woman, get married, and have children, and he wanted my help!
So, we got to work: We made a few goals and steps toward these goals, including gaining social skills for dating, and learning how to seek out potential female partners.
A few days later, I got a call from his mother. She was his legal guardian, and was more interested in having Adam learn other independent living skills, such as navigating the Raleigh public bus system and managing money. I told her I understood where she was coming from, but that Adam was very clear in his desire to have goals supporting relationships. “Oh yes, I know he always says he wants to get a girlfriend and get married,” Adam’s mother said. “And that’s fine, he can have goals about that, but let’s face it – he won’t ever get married. He can barely care for himself.”
While I could understand the multiple barriers that would make it difficult for Adam to maintain what most would consider a “normal” married life, I was heartbroken by his mother’s statements. Adam was so clear and adamant on his goals, and in my eyes, I could see no reason to discourage him from striving toward something many people – including myself – desired in life. After some negotiation between Adam and his mother, we decided that in order for Adam to be successful in his goal of finding a wife, he would probably need to learn how to use the bus system efficiently so he could access places where he could find social gatherings on his own, and hopefully meet some friends and perhaps find his girlfriend, as well as take someone out on dates.
I’ve been teaching Health Education on and off since I was a sophomore in college, including sexual health. I’ve always found it so interesting that something so central to our lives as human beings is often seen as “hush, hush” when it comes to persons with intellectual and developmental disabilities (IDD). We don’t want to talk about it, and we don’t want to see it. Paradoxically, for all of society, including persons with IDD, images and messages of sexuality are everywhere.
Obviously, it is something we need to be talking about since this “hush hush” mentality feels especially present in the disability community. While people with disabilities have seen significant advances in equal rights in education, employment, and community living, affording them equal rights in relationships and sexuality continues to be an area of contention. Many Direct Support Professionals who work with individuals with disabilities do not receive any specific training on how to address issues of sexuality and relationships. In fact, one major study found that only 41% of direct care professionals in this field received any training on this topic. Lack of training in this area is incredibly detrimental to people with IDD as well as direct service providers, especially considering that “building and maintaining friendships and relationships” and “supporting health and wellness” are considered core competencies by the National Alliance for Direct Support Professionals.
In addition to a lack of formal training, most of the time when staff are talking about sexuality or relationships to the people they support, they are doing so reactively rather than proactively. Meaning, when a person with IDD is receiving independent living skills in regards to healthy relationships and sexuality, it is often done in response to a problem that has occurred. Perhaps there has been as an inappropriate sexual display in public, or perhaps the problem is an incident of sexual abuse, which is all too common among the members of this disability group.
This reactive approach to providing sexual health and relationship training to people with IDD can give the impression that normal human sexuality is dangerous or something to be feared – when in reality, it is something that is sought out as a fulfilling part of life across all people.
For many people who work with this population every day, there is fear surrounding “the talk”. How can you approach such a broad topic in a way that is helpful for people with IDD? There are several ways you can achieve this, and it doesn’t have to be in a strictly serious or prescribed way:
1. Acknowledge your own values and knowledge first
If you don’t feel comfortable talking about every topic, that’s okay. Recognize your comfort level and find other ways for the person you support to get answers to their questions.
2. Don’t wait to be asked a question.
Sometimes individuals may feel uncomfortable asking questions about relationships or sexuality. Don’t be afraid to break the ice; Find out what a person knows by asking open-ended questions.
3. Be receptive to questions.
If the person you support asks a question that takes you off-guard, take a breath before responding. Show the person you support that you are receptive to their question by listening to them without immediate judgment.
4. Always use correct terminology.
Always use appropriate terminology for body parts, sexual acts, and other sexuality- and relationship-related terms. Using “pet names” for body parts or sex acts can make it difficult for an individual to communicate if they have experienced abuse, and it can impede communication between them and their doctor.
5. Don’t make up information – use your resources.
If you don’t know the correct answer to a question, don’t make something up! Always take the time to find an appropriate resource.
6. Help model appropriate social skills.
Use your position to model appropriate touch and interactions with the people you support. For example, if you are trying to teach appropriate physical boundaries between individuals and professionals in the community but then give hugs or put your arm around the person you support you are sending a conflicting message.
7. Use the media as a tool.
If you pay attention, you’ll find that messages about sexuality and relationships are everywhere–whether it’s scantily clad men and women on the covers of magazines at the grocery store or an episode of a reality television show–the topic is ubiquitous. Use these opportunities to start conversations about relationships and sexuality.
People with IDD are deserving of all the same rights as people without disabilities – this includes the ability to have access to health information about sexuality and support in understanding the concepts of relationship building. Providing direct support professionals the skills and training to adequately address these topics will help create a more competent workforce and bridge the gap when it comes to individuals with IDD’s knowledge on these critical topics. The more openly we can talk about these topics with the people we support, the closer we get to truly achieving this equality.
*Names have been changed.