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The Survey

The first year of the Sexuality and Access Project was spent gathering stories from people who use attendant services and from people who provide them.  In total we had 464 people participate in the survey.  You can read the Executive Summary of the survey report below.  You can download the complete survey here: Sexuality and Access Survey Summary

Executive Summary

This report addresses the experience of people with disabilities who make use of attendant support in their daily lives and the experiences of those who provide these services and support. Attendant services have been traditionally understood to include supporting with activities such as cooking, cleaning, shopping, using the bathroom, bathing, and dressing.

The intimate nature of this working relationship means that sexual health will come up, and requests for sexual support will be made. While regional guidelines have been proposed for adults living in long-term care facilities, no framework for providing or requesting support for sexual activities or sexual expression for people with disabilities has been established, and as a result both support workers and people who use their services can find themselves in situations where they feel uncomfortable, afraid, frustrated, sexually harassed, exploited, or abused.

It is difficult to offer a simple definition of sexual support, as any definition must be grounded in the individual sexual expression from which it arises. Broadly speaking, sexual support describes the range of assistance that an individual may request and an attendant may provide, as well as an acknowledgement that sexuality is a part of life and may be an activity of daily living. Sexual support can be thought of along a continuum of involvement and intimacy, from assistance with cooking a romantic meal to assistance with shopping for sexual materials (e.g. sex toys or legal adult erotic material) to assistance with positioning for sexual activities.

This report summarizes the results of a year-long survey conducted by the Sexuality and Access Project and funded by the Ontario Trillium Foundation. The survey – the first of its kind ever undertaken – asked attendant service users and frontline providers to anonymously share their experiences with discussing, negotiating, and expressing their sexual and gender identities with each other in the context of their working relationship.

The project began with some basic truths that are simple, but are often simply ignored:

Sexual rights are human rights.

Sexual health is core component of general health.

People with disabilities who use attendant services have a right to access information and resources about their sexual health and support in expressing their sexuality.

Attendants have sexual rights, which include the right to a workplace that is not sexualized.

The project also began with an understanding that societal shame around sexuality results in silence, and this silence is often compounded when it intersects with other socially taboo subjects, like disability and the details of personal support. The 464 people who participated in our survey (310 people using attendant services and 154 attendants) had plenty to tell us about this shaming silence and the impact it has on their lives.

 

Silence about Sexuality and Attendant Services Exists at All Levels

People using attendant services were keenly aware of the systemic silence that surrounds their desire to express their sexuality, and attendants were equally aware of the silence they confront when they try to support this expression. Researchers, policy makers, agencies, and even advocate and activist organizations are often at a loss as to how they can address issues of sexuality and sexual health in attendant service relationships. The participants in this survey offered many suggestions.


Where There Is Silence, Confusion, Fear, Harassment, and Abuse Can Flourish

For people who use attendant services, the choice to reveal or conceal aspects of their sexuality was tied to concerns about feeling safe in the working relationship. Respondents told us that such decisions are often made out of fear of losing services and/or housing, or a fear of retaliation in other forms. Attendant service users also shared stories of harassment and abuse that they felt they could not talk about publically because of the climate of silence and shame around sexuality.

People providing attendant services shared stories about hiding aspects of who they were (specifically regarding sexual orientation and gender identity) for fear of losing employment, and reluctance to provide support without clear guidelines, for fear of retaliation from co-workers and/or employers. Attendants also shared stories of harassment and abuse that they felt they could not talk about publically in part because of a single focus in training around sexual abuse and no apparent space for other kinds of workplace conversations about sexual health.
The Rights of Attendant Service Users and Providers Are Not Diametrically Opposed

Participants in this project told us in no uncertain terms that a model that pits “client” rights against attendant rights satisfies neither party. Any proposal to support the sexual health of attendant service users and the workplace safety of attendants needs to foreground the fact that it is a relationship and not simply two people working side by side but independently of each other. Many participants related stories of successful negotiations around sexuality that showed that it is possible for both people in the relationship to feel safe, to feel respected, and to experience the working relationship as one that promotes health, including sexual health.

Attendants and Attendant Service Users Want to Talk

The survey made it crystal clear that everyone involved wants to have a place to start professional and respectful conversations about sexuality. Survey responses emphasized that the elements necessary to successful negotiations of sexual support are comfort in the interpersonal dynamics, mutual understanding of boundaries, and trust that privacy will be respected. These elements cannot be established without clear lines of communication.

There is much work to do, and there is an urgent need to get it done to reduce the risk of sexual harassment and exploitation. There are many ways those of us working in policy, education, training, and advocacy can help fill the silence around sexuality in personal care attendant work and improve the health and lives of both attendants and people using attendant services.

But that work must include the people we say we want to support, and it must start with us learning from their experience. Here, we believe, is where the conversation should begin.

It is our hope that the Sexuality and Access Project will provide an entry point into a much bigger conversation about how people who use attendant services (however they use them) can gain greater and easier access to their basic human rights, including their sexual rights, and how people who provide attendant services (however they provide them) can ensure their own health and safety in the workplace.

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