"We've fought for equality in terms of access to the built environment, education, and employment.
Now we want our rights to love, form relationships, and have sex with ourselves and with other people."

THE RIGHT TO BE SEXUAL ~
A RADICAL PROPOSAL?


Facilitating Sex & Relationships

for People with Disabilities

Dominic Davies

This paper was presented at a conference titled Disability, Sexuality and Culture: Societal and Experiential Perspectives on Multiple Identities, held at San Francisco State University 16-18 March 2000. It has been edited slightly for publication here, with the cooperation of the author. -ed.

Introduction

About 18 months ago on a visit to Sydney I attended Australia's first conference for lesbian, gay, bisexual and transgender people with disabilities, organized by Access Plus. This conference was pretty groundbreaking. It was probably the worlds first conference that enabled disabled lesbian, gay, bisexual and transgender people to meet together. The conference afforded me the opportunity to meet some of Australia's key sexuality and disability activists: George Taleporos (who is present at this conference 'virtually' through a poster presentation video and who is undertaking a doctoral research project in sexuality, body image and physical disability); Kali Wilde, from whose personal experience of discrimination the conference was conceived; Lisa Sampson who currently works for the New South Wales Aging and Disability Department but is planning to make several cutting-edge documentaries about sex and disability and is also here at this conference; and Kath Duncan a journalist and activist who had been making a documentary about devotees.

CONCEPT

The What

A couple of months later, after quite a bit of discussion, we conceived a project not dissimilar to 'Surrogacy' in some ways, but geared particularly to the needs of people with disabilities of all sexual orientations. 'Surrogacy' however, is a very widely interpreted concept and outside the US has a fairly negative press in the sex therapy world. We have been struggling for a new name and The Sexual and Relationship Facilitation Project for People with Disabilities is our current working title.

The project aims to promote the development of disabled people's self-esteem, including feelings about their bodies, how to enhance body awareness and how to develop skills and confidence in forming sexual and emotional relationships (if these are among their goals).

We believe it is fine to be celibate and single, if it's by choice. However, ableism, body fascism, and economic disadvantage are key social factors that cause many disabled people to remain single and isolated against their will.

Many people with disabilities experience touch only in ways that are functional and intrusive—people are poked and prodded, but rarely stroked or caressed. Research has clearly demonstrated the importance of affirming, gentle, loving touch on physical and emotional well being. Our project will be a highly flexible and responsive user-led service that helps disabled people achieve well-being, personal competency and satisfaction in the last frontier of our civil and human rights fight to participate equally in society. We've fought for equality in terms of access to the built environment, to education and employment now we want our rights to love, form relationships, and have sex with ourselves and with other people.

This is going to be challenging not only for society to deal with, but for us, too. Anne Finger states: "Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It's easier for us to talk about—and formulate strategies for changing— discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction." [Finger, 1992: 9].

Many disabled people and organizations have difficulties around notions of our being sexual, and forming relationships. We have been excluded from most of the dominant socialization processes that help teach and prepare people for love, sex and intimacy. Where we have had feedback about our right to participation in this arena we have usually been as welcome as a pot roast at a vegetarian's convention!

In this project we envisage disabled people getting access to skilled therapeutic help to work on whatever issues impede them in developing a sound sense of self with regard to feelings about their bodies and self-esteem. Developing self-confidence in this arena may lead to working on finding and maintaining sexual and emotional relationships. Participants may choose to work on self-esteem and body-image issues, on education about human sexuality and its implications for their particular impairment; they may want to acquire dating and relationship skills, learning more about sensual sensitivities of their bodies, or if they want it and where specific legislation permits, they may simply want to get their rocks off! However, in the UK, we would not be permitted to actively assist in genital contact leading to orgasm.

The Why

As stated earlier, opportunities have been rare for disabled people to learn about love, sex and relationships:

Lack of physical and financial access to where the rest of society work and play has meant we are disadvantaged in opportunities to meet people and acquire sexual and relationship skills through practice and normal socialization processes. Life in residential institutions or with our families is often policed to ensure we don't develop intimate relationships.

Lack of positive role models and the low self-esteem generated by shame about our bodies from the messages we receive from those around us, can create psychological barriers as great as any in the built environment to our believing in our capacity to participate in sexual relationships.

Many disabled people have never experienced loving sensual touch. Our experience of touch is being poked and prodded in having our most basic personal hygiene needs met. We may not know what kinds of touch feel good on our differently formed bodies.

Rather than receiving some education geared to our specific needs and situations, we are more often excluded from sex education entirely. We may need, for example, to learn about specific positions which would enable us to give and receive sexual pleasure, ways of managing pain and spasm, how to deal with the physical adaptations which enable us to function in the world but which may become obstacles in sexual relationships.

The How

Training for Facilitators

We propose that personal goals facilitators would include disabled and non-disabled people, and we would actively encourage facilitators of all sexual orientations and gender identities. Choice and flexibility are central.

We envisage that training could be on a modular basis with increasing complexity of tasks and learning, so that students could progress from certificate to diploma is they wished. Students would also be encouraged to build on previous knowledge, experience and skills, thus Accreditation of Prior Learning would ensure a flexibility to progress through the training in a way that was tailored to the student's needs.

Draft Outline for Course Curricula

It has been suggested that we would find interest among a variety of groups for training as Facilitators: disabled people themselves with a variety of backgrounds, personal care workers, nurses, sex workers, and counselors, and body oriented therapists (masseurs etc.).

Individual Assessment: We propose that disabled people approaching the service for help would receive an individual assessment, which would seek to address their previous experience and knowledge and co-create some personal goals and objectives for their particular situation. Facilitator(s) would then work with the disabled person on these goals, and the work would be monitored and supervised by regular three-way meetings between the disabled person, the supervisor ('assessor') and the facilitator(s).

Funding: This is THE most problematic area we can think of. Who is going to pay for all this? We should be applying for Government/State funding out of the Department of Health and Social Service budgets. We will support our claim to these funds under preexisting ADL legislation. It may be best to locate the management of such a service in the nonprofit voluntary sector so that maximum flexibility is given to service development and responsiveness to changing needs.

Research and development grants may be available for small-scale pilot projects via universities and sympathetic trusts and charities. Previously funded work on sexuality and disability has usually been centered on problematized notions of sexuality, for example, the prevention of sexual abuse. Such projects have been aimed at helping disabled people recognize and report sexual abuse, or they have been schemes to manage "Troublesome Sexual Expression in Persons with Developmental Disabilities," as the recent Family Life Associates Conference in California described it.

Our work would be presented in a more positive way; it is about empowerment and enabling disabled people to improve their confidence and self-image. For example it is anticipated the Facilitation Project will be working with a great many disabled people who have experienced sexual abuse, and part of their recovery program will be about undoing the damage caused and working on prevention of further abuse through positive self-esteem and self-empowerment.

We also anticipate working with people on issues of sexual frustration and inappropriate behavior. However, at our core, will be our belief in compassionate self-actualization through peer-led education and the support working of trained allies.

The Where

All Over The World: This sort of project would work well throughout the world and we currently know of no similar project anywhere. Limited specialist service provision for disabled people exists in various small pockets. For example, individual professional sex surrogates working with therapists in California and a few other states in the US have disabled people among their clientele. In the Netherlands and Denmark the state runs a dedicated licensed brothel for disabled peoples' needs.

However, we propose a concept designed to encourage individuals and groups of disabled people and their allies to set up their own programs in their own locations. This means developing the concept to best fit the specific demands and places.

Random Ideas for Development: In some locales it might be helpful to start by running a short training session for therapeutic masseurs and body workers in offering sensual touch workshops for disabled people. In other locations, it might be appropriate to offer in an existing course on health and social care a module on sexuality and disability, with the aim of interesting students in assisting us in our aims. Elsewhere it might be possible to find sex workers interested in working with disabled people and learning more about how to meet their needs.

Somewhere else we might explore training counselors or nurses in promoting self-esteem work for people with disabilities. Wherever we get an opportunity to push the boundaries back further and realize this goal of developing a dedicated service for disabled people to develop their sexual and relational selves we should do so, always moving towards the goal of setting up the full-scale Facilitation Project for People With Disabilities.

The When

NOW: By setting up networks for support and development Interested parties can support each other in the development of services and programs.

We have already taken steps to do precisely that by establishing a new listserve where anyone interested can discuss the project. To subscribe,
e-mail: SARFP-subscribe@onelist.com

We hope that this initial networking device encourages people to develop activity groups interested in establishing Sexual and Relationship Facilitation Projects in their own localities, while staying in touch with others worldwide through the listserve.

©Dominic Davies 2000

 

DOMINIC DAVIES (disability@serene.dircon.co.uk) is a psychotherapist in private practice.
With Kath Gillespie-Sills and Tom Shakespeare he is author of the landmark study
The Sexual Politics of Disability: Untold Desires
(Cassell, 1996).