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."
RIGHT TO BE SEXUAL ~
A RADICAL PROPOSAL?
Facilitating Sex & Relationships
for People with Disabilities
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.
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
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
Many people with disabilities
experience touch only in ways that are functional and intrusivepeople
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 aboutand formulate strategies for changing
discrimination in employment, education, and housing than to talk
about our exclusion from sexuality and reproduction." [Finger, 1992:
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.
As stated earlier, opportunities
have been rare for disabled people to learn about love, sex and
· 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.
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
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.).
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
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
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
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.
All Over The World:
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
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,
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
is a psychotherapist in private practice.
With Kath Gillespie-Sills and Tom Shakespeare he is author of the
Sexual Politics of Disability: Untold Desires