Following decades of suppression and even outright rejection of the sexual rights of people with intellectual and developmental disabilities by society, service systems, and others, the evolution of self-advocacy efforts, support provision, and the international dialogue is leading to improvements in areas of sexuality. This shift hasn’t occurred without some alarming and disturbing components, or without continued barriers to a true ‘sexual revolution’ for those in the human services system. From forced sterilization in the early 1900s to NPR reports of the egregious sexual assault epidemic facing people with disabilities, there are serious challenges ahead.
In this edition of Capstone e-Newsletter we’re taking a look at research surrounding sexuality, the barriers people face, how human service agencies can support sexuality, along with profiling an organization in Australia that has developed and implemented a successful program to promote people’s sexuality.
What People With IDD Are Saying
By Carli Friedman | CQL Director of Research
Organizations can serve as gatekeepers to sexuality and relationships of those people they support. For this reason, as part of an interactive research study, 35 self-advocates with intellectual and developmental disabilities (IDD) were asked “what needs to change so that people [with IDD] can exercise sexual self-advocacy?” According to the self-advocates, a number of systemic barriers need to be removed so that they can exercise sexual self-advocacy. Many self-advocates discussed issues regarding the intersection of attitudes about disability and provider services. One self-advocate said, “I go to the doctor and he has a hard time looking at me. My staff is usually in the room with me and he looks at my staff and talks to my staff instead of looking at me and talking to me.” The self-advocates participating in the study widely protested that “you can tell your staff not to go into the doctor’s office with you! You have a choice!”
Assumptions about the interests and abilities of people with IDD often result in infantilization. For example, because people with IDD are often incorrectly and problematically associated with the functioning of a child, common stereotypes are that people with IDD are not interested in or capable of relationships and sex. As a result, the self-advocates in this study suggested staff receive education so they can provide respectful supports to people with IDD. One self-advocate explained “professionals sometimes are scared to talk about it because they don’t know what’s appropriate and what’s not… so I think they should have classes for professionals and teach their staff. People like us need to have relationships too.”
Promoting Healthy Relationships
To promote healthy relationships, self-advocates in the study also expressed a need for increased access to information about sex, including different types of relationships and safe sex practices. They suggested classes about sex, relationships, and gender, as well as the body and puberty more generally. They also believed information should be accessible utilizing pictures, diagrams, demonstrations, and role-plays as an opportunity to practice healthy relationships. The participants with IDD also wanted the ability to ask questions without feeling there might be repercussions for doing so.
Because of the many barriers people with IDD face in regard to sexuality, organizations have the ability to either serve as gatekeepers or facilitate the self-determination and empowerment of people with IDD. When looking to facilitate discussions about sexuality with those they serve, organizations can utilize low cost methods such as Nominal Group Technique (NGT), an interactive small group participatory activity which facilitates self-determination and empowerment (e.g., see Owen, Arnold, Friedman, & Sandman, 2016). Moreover, organizations can also implement the lessons learned/guidelines below from Betsy Burns and Melba Support Services to ensure people with IDD have the same access to the basic rights to sexual and reproductive health as non-disabled people (The United Nations, 2006).
- Friedman, C., Arnold, C. K., Owen, A. L., & Sandman, L. (2014). “Remember our voices are our tools:” Sexual self-advocacy as defined by people with intellectual and developmental disabilities. Sexuality and Disability, 32(4), 515-532.
- Owen, A., Arnold, K., Friedman, C., & Sandman, L. (2016). Nominal Group Technique: An accessible and interactive method for conceptualizing the sexual self-advocacy of adults with intellectual and developmental disabilities. Qualitative Social Work, 15(2), 175-189.
- The United Nations. (2006). Convention on the Rights of Persons with Disabilities.
Supporting People’s Sexuality
By Betsy Burns, CQL Quality Enhancement Specialist
Research has shown people with IDD face many barriers due to a variety of factors that restrict the overall quality of their lives. An individual’s lack of knowledge about sexuality violates their inherent sexual rights as human beings and inhibits healthy relationships, sometimes leading to poor decision-making around the expression of their sexuality. The position of The Arc (2008) states “every person has the right to exercise choices regarding sexual expression and social relationships. The presence of an IDD, regardless of severity, does not, in itself, justify loss of rights related to sexuality.” As mentioned by Carli earlier, these rights are also reinforced by the United Nations (2006).
The Role of Support Providers
Herein lies a dilemma. One of the barriers to an individual’s sexual rights is the inconsistency or lack of supports from providers. Many providers will indicate that they understand that people with IDD have inherent sexual rights, however, struggle with the very idea of sexuality education and who should provide it. Providers struggle with what, if any, ramifications may develop from parental concerns; however, people with IDD have the right to relationships and education about sexuality even if their providers or parents don’t want them to.
So what’s a provider to do? Moreover, what’s a person who trusts providers to support them in their lives – all aspects of their lives – including their right to sexual expression and social relationships, to do? Also, family as natural supports may not see their son or daughter as a sexual person and shy away from discussing this at all. All of this demonstrates that generating long-lasting change is crucial at all levels to fully support a person’s quality of life and their access to sexuality and sexuality education. Therefore, it is a provider’s responsibility to support, respect, protect, and enforce all the rights of people with IDD, including the right and responsibility to be a sexual human being.
Sexual Education & Staff Development
Just like non-disabled people, it is important to promote healthy relationships for people with IDD and to provide access to sexuality education. Becoming an “ask-able” support person, whether it is a provider or a parent, requires someone who is comfortable having the conversation. An “ask-able” support person around sexuality education, simply means being open to both acknowledging and helping someone with information they may have around sexuality or directing that person to someone who has the comfort level to give facts and resources to the person.
Direct support professionals have the most contact with people with IDD. Training specifically for the Direct Support Professional (DSPs) should include identifying their own beliefs, values, and perceptions about sexuality, relationships, and disability. DSPs should also understand regulations and policies, while developing skills to answer or direct the person to resources that will cover questions they may have around sexuality. It is important to have conversations with parents who do not view their son or daughter as sexual people and to explain the significance of sexuality education. Parents could be involved to discuss similar topics as natural supports for the person.
To that end, it is also valuable to create educational classes for providers and natural supports that enhance their knowledge and comfort level around the topic of sexuality education. It is vital that people with IDD know that they have someone they can turn to who will support them with this area of their lives without passing judgement or ignoring they are sexual human beings. Strong advocacy by an organization’s board and administrative team around policies and training, provide a foundation on which to build rich sexuality education programs for people with IDD, their families, and the staff who provide services and supports.
There are a number of resources available to help organizations strengthen their sexuality and relationship polices, educate and guide staff, and educate people with IDD below.
- The Quality of Life Curriculum: (The QOL Curriculum: Building Healthy Selves, Forming Healthy Relationships)
- Michelle Garcia, Psy.D. & associates P.O. Box 8915, The Woodlands, TX, 77387 www.drmgarcia.vpweb.com
- Proud and Included: Neumann Family services in partnership with the Illinois Council on Developmental http://www.proudandincluded.org/
- The Facts of Life and More: Sexuality and Intimacy for People with Intellectual and Developmental Disabilities, by Leslie Walker-Hirsh http://www.LeslieWalker-Hirsch.com
- Sexuality and Developmental Disabilities Workshops, Katherine McLaughlin www.disabilityworkshops.com
- Sinclair, J., Unruh, D., Lindstrom, L., & Scanlon, D. (2015). Barriers to sexuality for individuals with intellectual and developmental disabilities: A literature review. Education and Training in Autism and Developmental Disabilities, 50(1), 3-16
- The Arc of the US. (2008). Position statement: Sexuality. Retrieved from http://www.thearc.org/who-we-are/position-statements/life-in-the-community/sexuality
- The United Nations. (2006). Convention on the Rights of Persons with Disabilities.
The Social Impact Program
By David Glazebrook, General Manager Innovation & Development, Melba Support Services
In 2008 at Impact Support Services, a disability services agency that merged with Melba Support Services – which achieved CQL Accreditation With Distinction – we asked the people we had the privilege of supporting ‘”in a perfect world, what else could we do for you?” Almost all replied “Could you get me a boyfriend/girlfriend?” We thought with their support and direction, we should do something about this. Bringing together 20 people with an intellectual disability, we designed a program that would provide individuals with the skills and real-life situations that would allow them to develop and form valued friendships and relationships.
The ability for people to have friendships, relationships, and intimacy is a human right. Through funding from the Lord Mayors Charitable Foundation, in 2010 we were able to deliver a pilot program called Social Impact. Starting in 2011, it became a fee-for-service program. Continual input and evaluation saw the program develop.
The Connection To Person-Centred Planning
Australia’s disability sector continues to embrace person-centred plans, where the individual’s wishes are paramount and at the centre of everything they do. As plans are increasingly designed by them and not for them, it is being recognised that their natural desires, like all people, for friends and relationships is important. This concept is willingly accepted, however, there is a question of just how go from theoretical acceptance to practical actions, especially when one of the topics is sex. (Sex, sexuality, and sex education to give you an idea!)
The people we spoke with said they wanted sex. They then went on to also talk about how they wanted to be the people you saw sharing bacon and eggs on a Saturday morning at a cafe. They clearly talked about the completeness of a relationship which covers many factors and areas. Our world bombards people with images of friendships and relationships. Not unexpectedly, the people we support want to explore what this means for them and to be a part of it.
The skills provided in this program, in brief, cover:
- ‘Let’s begin with me’ – increasing my personal effectiveness
- ‘Getting to know me’ – assertiveness and setting my goals
- Meeting new people – conversations, and communication
- Body image and dating, including safe dating
- Healthy mind and a healthy body
- Building relationships and friendships
- Safe sex practices
- Social media awareness and Sexting
- Review and evaluation
At the completion of the course each person experienced:
- How to interact with people, when to be assertive, and when to listen
- The difference between a good and bad relationship, and if stuck in a bad relationship strategies on how to end the relationship
- The difference between a friendship and a relationship -“Is this girl my ‘girlfriend’ or a friend who is a girl.”
- The risks and laws of unsafe sex and sexual abuse
- Sexting – What it is and the law
- Dating – How to go on a date, how should I ask, where should we go, who should I tell
- And many more!
We started delivering the Social Impact program as an accredited disability course in 2015, allowing us more time to cover more areas. In 2018, it will have a further iteration and we will ensure what we are delivering actually makes a difference and provides outcomes. This is important. Friendships and relationships do not occur in isolation; rather they are part of the whole, that delightful complexity involving the nuances of that thing called ‘life’.
For more information about The Social Impact Program:
General Manager Innovation & Development
Melba Support Services
Featured Capstone Article
A Tool For Discussing Sex And Relationships
In this Capstone, we take a brief look back at some of the articles we’ve published that take a deep dive into issues of sexuality and relationships. Then, we showcase a new tool that has been developed by CQL to spark conversations about these important topics.Continue Reading