Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities
Raise Me Up
Participants in the Raise Me Up program.
At the Down Syndrome Resource Foundation (DSRF), our mission is to support people living with Down syndrome and their families with individualized and leading-edge educational programs, health services, information resources, and rich social connections so each person can flourish in their own right. Our vision is a country that values and empowers people with Down syndrome, fostering economic, social, and individual inclusion throughout their lives. Our therapists and teachers are Down syndrome specialists who work almost exclusively with individuals with Down syndrome. We have a deep knowledge of this population’s unique learning strengths and needs, and Raise Me Up was created to meet these needs.
In 2015, I began teaching folks of all ages with Down syndrome. Many of my students were expressing loneliness, social isolation, and frustrations with being infantilized by others. Many wanted friendships, relationships, and families of their own, but did not know the steps to get there due to a lack of adaptive comprehensive sexual health education, very little representation in the media, and systemic issues creating more barriers to social opportunities and programs. In 2020, I became a certified comprehensive sexual health educator.
Individuals experiencing challenges with their mental health were often ones yearning for romantic relationships and a basic understanding of their bodies. They were struggling with body image issues and confidence issues, as well as small social networks. My colleague Susan Fawcett and I wanted to see if we could help.
In the summer of 2020, we launched the Raise Me Up pilot program. Raise Me Up is a small group program for people with Down syndrome that focuses on self-esteem and healthy relationships. Each day, we spend time empowering and celebrating ourselves and discussing how loving and respecting ourselves can lead to meaningful and fun relationships with our family, friends, and potential dates. As we work on ourselves, we talk about attraction, crushes, and dating. In a world where everyone is bombarded by expectations on how we should look, act, and be like, we want to support each other in remembering we are more alike than different, and we are each worthy of love, from ourselves and from others.
Raise Me Up program participants embrace during a group activity.
The pilot program was stressful. In British Columbia in 2020, there were many restrictions on indoor group activities due to the pandemic, and we knew this was going to be some people’s first social interactions in months. We decided to structure it like a one-week summer camp, full of fun and dancing with learning about consent, boundaries, and self-regulatory strategies for finding calmness in life and building self-confidence. With a group of six young adults, the first Raise Me Up camp turned out to be a highlight of the summer for DSRF.
Today, we practice coping strategies that help us feel better. This can include compliments to ourselves and to others; dance parties; science experiments, such as identifying scents that calm us down versus perk us up; petting a gentle animal (usually mine or Susan’s dogs, but participants have brought in their pets as well); guided meditation; and putting on talent shows. We learn about consent, setting healthy boundaries, and bodily autonomy through role-playing and going around the class asking for anything we want or need at the time – hugs, high fives, a slow dance, or someone’s contact information. It’s a safe place to flirt for the first time! A highlight of the week is a photoshoot with Hina Mahmood, a professional photographer who also happens to be the senior occupational therapist at DSRF. Participants dress to feel good. We’ve had people go very fancy and formal with their graduation dresses (the equivalent of an American prom). Some dress up as their favourite celebrities and characters, while others have experimented with their gender expression. We spend the week celebrating all facets of ourselves and our sexuality.
The spirit of Raise Me Up has stayed the same as the program has grown. It is now run four times a year for three age groups: tweens, teens, and adults. We have had participants travel from out of province and even out of the country come to participate. Folks of all sexual orientations and gender identities have participated in Raise Me Up. Participants have formed many friendships and even a few romantic relationships, including a couple from our pilot program who just celebrated their third anniversary while attending Raise Me Up for the fourth time! Most participants have come back at least one more time. Many have also continued to see us individually for extra support throughout the year.
We hope this program continues to grow, particularly in the tween age-group, because forming healthy relationships is a skill that should start early. We’ve had some parents from out of town ask if Raise Me Up will ever hit the road. Who knows? We hope to continue advocating for everyone with Down syndrome to have healthy, pleasurable, and meaningful relationships with their friends, family, potential romantic partners, and, most importantly, themselves.