Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities
Sexual Self-Determination: Building a Blueprint
If you had told my younger self that someday I would be advocating for transportation to a strip club for a middle-aged woman and her direct support professional, defending an elderly man’s right to explore cross-dressing with support from his foster care home, or using a lifelike model to help a parent explain masturbation to their adolescent child, I would have said there was no way I would know how to, or feel comfortable doing, any of that. And yet, here I am, doing all of that, and a whole lot more!
Three stories about people I’ve worked with illustrate some of the diverse needs of people with intellectual and/or developmental disabilities (IDD) regarding sexual and gender identities.
A gay man who recently moved to a foster care home found that his foster care provider was not homophobic, but really didn’t know how to support him to find people he could socialize with and potentially date. Our agency’s job was to help his foster care provider learn how to best support him to pursue the relationships he wanted. We helped him research gay social groups and hang-outs they could visit and LGBTQ+ organizations in the area where the provider could learn more and get guidance.
Another young person, assigned male at birth, told people online that he wanted to take his penis off. People online told him he must be transgender. Our job was to help him to understand what transgender means and ask him how he wanted his life to change. Did he want a different name, different pronouns, different dating options? We needed to be sure we understood what he wanted so we could support him by working toward his goals. We learned he was not actually transgender, but simply wanted to wear a certain outfit and thought his penis would be in the way of making it look right. Once we were able to figure out what he really wanted, we were able to help him learn options for wearing what he wanted without having to remove his genitals.
Among Friends activities.
When a transgender woman went out into the community in sweatpants and t-shirts, she was often misgendered due to her experiencing balding and a skin condition that caused her to have what people call a five o’clock shadow. This upset her and she often responded in an explosive way, which led to her not being welcomed at stores and restaurants in her neighborhood. Our job was to help her learn why people might misgender her based on what they have been taught about bodies and assumptions about gender, and to help her learn skills for managing her emotions and correcting people about her gender identity without damaging relationships that were important to her.
I founded Among Friends LLC in 2012. In May 2023, my close friend and co-worker for the past five years, Cara Wiggins, became my co-director. We have a small number of employees who live in different parts of Oregon and Washington. While our company is located in Oregon, we offer our services online throughout the world. We work with a wide range of people with disabilities of all ages and those who support them.
“What Does That Mean?”
We specialize in offering social-sexual support services, and often people wonder, “What does that mean?” It includes everything from, “I’m lonely and I don’t know how to meet people,” to “I’m doing things in public that are going to get me arrested.” We work with people on behaviors and issues related to bodies, gender identity, sexuality, relationships, trauma, consent, and so much more!
Over the years, we have developed numerous programs and services to respond to the needs of individuals, families, and communities. This includes professional behavior services for individuals and their support teams, advocacy, consulting, and training. We offer functional behavior assessments and positive behavior support plans to address issues people are struggling with, and we offer trainings to empower parents and professionals to address social-sexual needs and concerns with more confidence, competence, and compassion.
Our newer programs include skill-building and educational tools and resources, and our Sexual Self-Determination Training and Certification program. The certification program builds the capacity of parents, professionals, and communities to recognize and encourage healthy sexual development while working to prevent sexually maladaptive behaviors.
Why We Do This Work
I was a sexuality educator before I began working in the field of developmental disabilities. I quickly realized that the need for candid, comprehensive, and thoughtful supports around social-sexual behaviors for individuals and families was overwhelming. I also found that the resources and tools designed to help provide these supports were nearly non-existent. Worst of all, any services that did exist were only available after someone had been arrested and were focused on restriction and control. I discovered that many people who are listed on sex offender registries live with IDD and in many cases are on those lists due to a lack of education or understanding.
Our services, by contrast, help parents and professionals understand social-sexual behaviors; respond in positive, proactive, and person-centered ways; and advocate for healthy sexuality and relationships for people with disabilities. Our work with people with IDD focuses on supporting the whole person and their full human experience, which includes sexuality, gender identity, and relationships. We promote safe, legal, and situationally appropriate behaviors, which improve the quality of life and increase independence.
How We’re Building Capacity
In our first year, I had a year-long waitlist for services. By 2015, the waitlist was more than two years. After responding to hundreds of emails desperate for help and having to say it could be years before we could provide services, I knew I had to find a way to teach more people how to address these issues.
Author Shanya Luther.
So, I changed my agency’s status to allow me to hire employees and I began mentoring them in both behavior services and human sexuality. Next, I teamed up with two community partners to design a training and certification program so we could teach parents and professionals how to be more comfortable and confident in dealing with issues related to bodies, gender, sexuality, consent, and more. We also identified and mentored potential professionals in different geographic regions who were particularly comfortable with, and passionate about, these topics and who could become key resource people in their area.
That effort became our Sexual Self-Determination Training and Certification program, which I consider my legacy work. I love that it allows people to gain knowledge and skills to the extent of their interests and needs, and through it, we are building a network of professionals that will reach far beyond the work of one agency. Our next focus is on developing tools and training resources that can be used by individuals, families, teachers, and support teams who want to carry this work forward.
Calling All Villages
While I am grateful that I’ve experienced a lot of hope and accomplishment in this work and have seen the lives of many people changed for the better, the majority of people with IDD still face tremendous barriers. Most do not get any supports in this part of their lives and often their gender identities and sexualities are not even acknowledged. Laws and policies based on ignorance or fear of litigation, societal stigma, and caretakers with no training on these topics are still among the challenges. And yet, there are promising movements afoot. Trauma-informed care, acknowledgement of the dignity of risk, and supported decision-making are incredibly important tools in the social-sexual arena. We are also gaining ground on honoring sexual and gender identities as new generations are entering social services professions. And, state efforts to engage in person-centered, proactive, and positive services are allowing for more open conversations about people’s desire for connection, love, and belonging.
In every training, I say that I believe it’s going to take a village approach to supporting healthy sexual development. I hope villages everywhere are hearing the call.