Taken from the September/October 2012 issue of The Women's Health Activist Newsletter.

Sexuality is so intimate, it’s hard to imagine how you might ask for this kind of assistance. To be honest, it’s a conversation most abled-bodied people aren’t even sure how to begin.

We live in a culture that is largely obsessed with sex, but it’s actually quite hard to talk about individual sexual expression. When the complex issue of disability and the details of personal support get added to the mix, the conversation gets even murkier, and communicating honestly about these issues often involves a level of risk. To address this issue, the Sexuality and Access Project has begun work to foster much-needed conversations about people with disabilities and providers of attendant services (such as assistance with cooking, cleaning, bathing, etc.). Specifically, the Project sought to understand how the former “can gain greater and easier access to their basic human rights, including their sexual rights,” and how the latter “can ensure their own health and safety in the workplace.”¹

The Project, which is funded by Ontario Trillium Foundation and managed by Springtide Resources, isn’t your typical research study. It didn’t seek definitive answers to questions about attendant services and sexual support. Instead, it gathered unique stories and rich content to initiate a much-needed and nuanced conversation about the women and men who comprise this community. More than 400 individuals (both attendant service users and frontline providers) participated in the Project’s year-long survey, conducted in Canada beginning in 2009. They shared their thoughts, experiences, and personal stories, which provide important insights into the intersections of sexuality, gender, reproductive health, and disability. The results of the survey were released in 2011.

According to Fran Odette, Springtide Resources’ program manager, “When marginalized communities get researched, their experiences don’t [often] go anywhere other than into a paper and the people who are affected [by the research] don’t actually see what is written about them.” So, the Project included a second phase, to specifically avoid this pitfall by training people to be “peer discussion leaders.” These leaders can facilitate discussions and create safe spaces in communities where people can talk about their experiences, discuss what does and does not work, and learn what they can do to integrate sexual health into their work and lives. Trainings began last fall.

But what exactly is sexual health support? The Project describes sexual health support as “a range of [sexually-oriented] assistance that an individual may request and an attendant may provide.” This definition is coupled with the guiding principle that “sexuality is a part of life and may be an activity of daily living.”¹ In other words, sexual support exists along a continuum of involvement and intimacy. This intimacy can include anything from “cooking a romantic meal to assistance with shopping for sexual materials (sex toys, vibrator, legal adult erotic material, etc.), to assistance with positioning for sexual activities.”¹ Providing sexual support involves acknowledging that sexual health is a core component of general health and that individuals have the right not only to access information and resources about their sexual health, but also to request support in expressing their sexuality.

Important Findings

The vast majority of professional care-givers in the United States are women.² This is also true in Canada, where the Project took place. Most attendant service providers are women, while clients are split more or less equally between genders.

A key finding is that attendants sometimes believe that they need to protect their clients, even from sexual risk-taking; this can lead to an environment in which people living with a disability are hampered from expressing and/or exploring their sexuality. Gender and age are two factors that seem to prompt this need to protect. Says Fran, “We often want a guarantee for people with a disability. Then, when you add a gendered lens, what does that look like for women [or for young men] with disabilities who want to explore their sexuality?” After all, “dignity comes with exercising the right to make mistakes and learning from every outcome, good, bad, or neutral.”¹

Compounding this issue is the fact that, even today, male sexual expression remains much more widely accepted than female sexual expression. Fran noted that she has heard caregivers speak about how they often help male clients access sex workers, but that there is little to no discussion about helping female clients to do so or otherwise address their sexual needs. The net effect is that female clients may face resistance when asking for help in sexual health services. The combination of discomfort with female sexuality and the urge to protect the client can limit women’s ability to take risks and to express their sexuality, regardless of their sexual orientation.

The Project also found there to be a significant lack of open discussion about the place of sexuality in the caregiver-client relationship. The chart illustrates that this topic is rarely broached or included in service agreements.

Few systems exist within the social support field to protect and ensure that individuals who are living with a disability are able to express themselves sexually. Care providers usually lack a framework for providing sexual support services or guiding their clients in requesting support for sexual activities or expression. Without clear guidelines, and given the ongoing social taboos against discussing sexuality and disabilities, both attendants and the individuals who use their services “can find themselves in situations where they feel uncomfortable, afraid, frustrated, sexually harassed, exploited, or abused.” ¹

What’s Next?

The women and men who participated in the Project survey talked about “the unique challenge of a working relationship that involves a high degree of physical intimacy.” Both the individuals using attendant services and their caregivers need opportunities “to talk explicitly about intimacy, and hear what each other has to say.” Carving out safe spaces for these conversations can help improve these working relationships and could be a useful advocacy tool for both groups.¹

Individuals who use attendant services live a life that’s exposed. Spontaneity is hampered and complexities abound whenever someone needs sexual support. How do you negotiate asking for help getting into bed, or getting positioned for sex? It’s important to ensure that attendants are educated on a range of health issues, including reproductive and sexual health. Attendants need training and tools to be comfortable having these conversations and creating space for attendant users to bring up these topics comfortably. Attendants and attendant-users alike benefit from spaces where they feel comfortable asking questions about topics like sexual expression, contraception, preventing sexually transmitted infections, and other reproductive health topics.

While the Project is based in Canada, its findings have implications for the United States as well. The intersection of disability and sexuality is often overlooked not only in caregiver policies and procedures, but also as a focus of mainstream women’s health advocacy. Because women use attendant services and so many work as attendants, women’s health advocates need to work to ensure that all women have self-determination in all aspects of their reproductive and sexual health regardless of their race, gender, age, ability or disability, socioeconomic status, or sexual orientation. We must also remember that caregivers are our greatest allies and many are committed to helping women (and men) express their sexuality. Our work should ensure that these caregivers have access to training that helps them effectively provide sexual health support and protect their own health and safety in the workplace.

For more information about the Sexuality and Access Project, visit http://sexuality-and-access.com; Springtide Resources: http://www.springtideresources.org

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Kira S. Jones, M.A., is an academic advisor for the College of Fine Arts at the University of Utah and a NWHN Board Member.

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