Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities
Creating Our Rainbow Guidebook:
Understanding and Supporting LGBTQ+People with Intellectual and Developmental Disabilities
Authors Oscar Hughes (top), Eleanore Johnsen (left), and Pauline Bosma (right) show their pride with a rainbow flag.
As a research team, we wanted to learn about the strengths and struggles in the lives of LGBTQ adults with intellectual and developmental disabilities (IDD), and to hear what supports and resources could help to make the world a better place. First, we wrote interview questions, such as, “Is there anyone in your life who accepts you? How do you know they accept you?” Then Oscar interviewed a diverse group of 23 LGBTQ+ adults with IDD from across the United States. He heard stories from adults of a wide variety of ages with various racial and ethnic identities, many different gender and sexual identities, and IDD.
Oscar summarized what all the participants talked about in their interviews and then we met as a group to think of an action project that could help people. We decided to write a free online guidebook about understanding the lives of LGBTQ+ people with IDD so that supporters, such as family members and service providers, could read about how we want to be treated. We learned important lessons from our community. We hope you will help others to learn about the struggles and the strengths of our community by reading and sharing our guidebook at RainbowGuidebook.com.
We learned from our research that people with IDD can be LGBTQ+ and they want to be able to express their true selves. Many participants said that it was scary or confusing when they started to notice their gender or sexuality and that they were afraid to come out about their LGBTQ+ feelings. Many said they hid how they felt for a long time or are still hiding it. About coming out as gay, one participant said, “I've held this secret for 26 years, not only from my girlfriend, but also from my family.” A few people said that others did not believe their LGBTQ+ identity because of their disability. For example, one participant said that because of his disability, his parents did not believe that he could understand his transgender identity, and they tried to prevent him from starting his gender transition.
Unfortunately, many people said that they experienced rejection and discrimination because of their gender or sexuality. For example, we heard from participants whose families would not speak to them or were violent toward them. Some people told us that they had experienced bullying or workplace discrimination, including one transgender man who was not allowed to use the men’s bathroom at his job or another participant who was fired after his supervisor said, “You chose to be this way. Now you have to face the consequences.” All five participants who were Black, African American, or biracial described how racism also affected their lives. “The color of my skin, being Black, is hard enough already,” another participant said. “We go through so much already enough because of the color of our skin. So, don’t add on the fact that you’re gay. Because that’s a double whammy.”
It was difficult for many participants to express their gender and sexual identities in their everyday lives because they were isolated, did not receive the support they needed, and were denied decision-making control. For example, many people wanted to go to LGBTQ+ groups or events, but they did not have the transportation or staff support to participate. Many participants also faced barriers to connecting within the LGBTQ+ community because many LGBTQ+ spaces were not accessible to people with disabilities, or other LGBTQ+ people did not know how to interact with people with disabilities. Participants said that they wanted to take steps to express their identities, such as starting online dating, being sexual with another person, or starting hormones for gender transition, but that their staff and their families were unwilling to support them with these steps or did not know how. People also felt controlled by caregivers who were preventing them from making their own decisions about their self-expression. For example, one participant’s grandparents bought them women’s clothes and told their grandchild that they should wear women’s clothes because they have a female body. A staff member told another participant that he was not allowed to go to a Pride parade because they did not want him to kiss any men.
The participants described many emotions, such as feeling depressed or frustrated, because they did not have opportunities to express their LGBTQ+ identities. Almost everyone was proud of who they are, however, and persevered despite the mistreatment and discrimination that they faced. “If your crown falls, whether it’s a tiara or a crown, because eventually it’s going to fall sometimes. Even mine’s fallen at times, and I just pick it up, and keep going forward,” another participant said. Many participants valued that they are creative, fun, unique, true to themselves, and making the world a better place. “It makes me happy and proud to be bisexual because I can understand some people better because of that…It just makes me feel more emp- owered to do stuff to help people,” one participant said. The participants described happiness in their lives and shared great ideas on how the world could become a more accepting and inclusive place.
How We Want to Be Treated
You can show acceptance for LGBTQ+ people with IDD by believing what we say about ourselves, listening to our feelings and decisions, and using the names and pronouns that we use. We also feel accepted when you share positive messages about gender and sexual diversity and educate yourself about LGBTQ+ identities and communities. It is also important to follow the lead of LGBTQ+ people with IDD. Even when we need education and support, we should be the ones who ultimately decide how we express ourselves. If someone comes out to you as LGBTQ+, you can tell them, “I accept you for who you are. Is there anything I can do to support you?” A transgender person might want support expressing their gender with clothes and makeup, telling their employer or co-workers about their gender transition, or taking steps in their gender transition, such as changing their name or learning about surgeries. A gay or bisexual person might want support meeting potential dating partners, going out to a gay event, or learning how to have safer sex with their partner. For example, one participant in our project said, “I do need help with finding a girlfriend. It's hard to find a girlfriend…It's hard to find a place to meet other gay people.” Some people might just want to talk about how they are feeling. Make sure you don’t tell private information about someone’s gender or sexuality without their permission. You should be an open-minded listener and provide accurate and LGBTQ+ inclusive information so the person can decide for themselves how to express who they are.
Connecting with others in the LGBTQ+ community can have a positive impact on our lives. Many of our participants said that they understood themselves better and accepted who they are when they met other LGBTQ+ people. Some people might want to join an LGBTQ+ support group or find a mentor with a similar identity. We have an online Rainbow Support Group that is by and for LGBTQ+ self-advocates from all over the United States. The information about our group is at WeAreMASS.org/rainbow.
It is not easy changing the world, so we need our friends, families, staff, and service providers to advocate alongside us to promote acceptance and support for LGBTQ+ people. We can spread awareness that people with disabilities can be LGBTQ+ and deserve to be accepted and treated with respect. Sharing our personal stories helps people to understand what we go through and how we want to be treated. We should also advocate together to end discrimination and fight for opportunities, self-determination, and justice, so that the world can be more equitable and inclusive.
The following are direct quotes from actual participants in our project:
“We are human beings first and foremost. We are very sexual... and we want our culture and our society to really think about what is going on in the disability community because we need people to understand and do more research.”
“What if I have someone over and my staff are here? Can I lock my door?”
“This is who I am. When we know what we like, we know what we like. We can't control who we are attracted to. Attraction is not a choice. For real.”
“When I started to use the men’s bathroom, I got in trouble for using it at work. They called the union on me. I said, “I am a man so I can use the men’s room.” They told me I had to use the girl’s room. So, I had to change stores. I tried to advocate for myself as much as I could.”
“Usually, the person that is LGBT usually be afraid to tell their parents that. Just ask them different questions, try to get to know your child further, and try to make them comfortable...Parents have to be open when they give support.”