Desire denied

Disabled people’s sexual wants and needs are
often overlooked. Natalie Valios reports on the obstacles they
still face in this important area of their lives and the support
that is available.

Sex. You can’t watch the television, read a
magazine or walk down the street without sexual images screaming
from the screen, pages or billboards. Sex sells – everything from
cars to ice cream. But if those with an active sex life are getting
jaded, how much more frustrating must it be for people for whom sex
is not seen as an important or relevant part of their lives?

Disabled people face prejudices in many
aspects of their lives, but maybe none more so than when it comes
to sexual relationships. When was the last time you saw a TV soap
storyline involving a disabled person or someone with learning
difficulties in a sexual relationship? Or even a positive body
image for a disabled person?

Glossy magazines push the have-it-all culture
– the career, the family, the perfect body, multiple orgasms. It is
hard to resist measuring our own attractiveness against the images
we see all around us. And disabled people don’t generally fit into
the non-disabled perception of sexual attractiveness.

“The main issue is the thinking that disabled
people are different from the rest of the population,” says
Lorraine Gradwell, co-deputy chairperson of the Greater Manchester
Coalition of Disabled People, and a wheelchair user herself. “It’s
about social exclusion and inappropriate professional involvement.
Why are disabled people always siphoned off to specialist services
and separated from their peers?”

A young disabled person may get far more
benefit from going to an Ann Summers party than asking a social
worker’s advice about sex, she says. Think back to your first heady
days of sexual experimentation. How did you meet partners? For most
it is at pubs, clubs, parties, holidays. But disabled people can
lose out on the rites of passage to dating and having sex for the
first time because of isolation.

“Manchester on a Friday night is heaving with
young people, but you don’t see disabled people. It’s not through
choice but because they can’t get into town. And if they can’t meet
a partner, they aren’t going to have it away,” says Gradwell
bluntly.

Lack of privacy can be an intrinsic problem.
While able-bodied teenagers are often free to sleep with who they
want, when they want, perhaps without anyone else knowing, a
severely disabled person surrounded by carers will have little, if
any, opportunity to do the same, says Simon Parritt, director of
the Association to Aid the Sexual and Personal Relationships of
People with a Disability (Spod).

This is particularly true in residential care
where residents depend on staff help. Staff might have personal
objections to buying a resident a pornographic magazine. The home’s
adult protection policies could clash with disabled people pursuing
their right to have relationships because this might expose staff
to a risk of allegations, or the disabled person to abusive
practices by care staff. In some cases, care providers would also
have to deal with parental disapproval of residents being permitted
to have sexual relationships.

Disabled people living in their own homes may
also find themselves subject to the views and attitudes of those
providing care and support. A not uncommon scenario, says Parritt,
is disabled men being threatened with the removal of home care
because staff found pornographic magazines and videos.

“Sex and intimacy for a disabled person are
not seen as basic needs, but luxury desires,” says Parritt, a
chartered counselling psychologist.

The association would like to see routine
health, occupational therapy and social work assessments include
questions on sexuality. “If you have difficulty climbing stairs
they come up with aids and solutions. But difficulty having sex
wouldn’t be addressed. It might be that all they need is a cushion
in bed.”

Direct payments heralded a life change for
thousands of disabled people, bringing them freedom and control.
And they enable a gay disabled person to employ personal assistants
who are open to their sexuality, rather than hiding their sexual
orientation for fear of prejudices. But the use by disabled people
of direct payments to help their social lives is still frowned
upon. Parritt recounts the story of a disabled woman who was easily
tired and wanted to use direct payments to pay someone to help with
the cooking so that she had more energy to socialise. She was told
that if she had the energy to go out she should use it to look
after herself.

There is also an issue about whether disabled
people employing personal assistants can legitimately expect them
to assist with sex. Can a disabled person reasonably ask their
personal assistant to put a condom on, for example? Or help a
couple get into a lovemaking position? Or stay in the house if they
need help after having sex?

Maybe surprisingly, Parritt believes that if a
disabled person has several personal assistants, one is normally
prepared to help in these extremely intimate tasks. However, if
this is the case, specific contracts must be drawn up to ensure
there is no question of confusion around abuse and consent, he
warns. It is this fear around abuse that is another barrier to
sexual fulfillment for disabled people. Most training support
around sex and disabled people is about abuse and sexually
transmitted diseases, rather than a healthy sex life.

“For most people sex is good fun, but we seem
to lose track of that [for disabled people],” says Parritt.

Take the sensation of touch: a sensual feeling
if you are being stroked or hugged by your partner, but hardly a
pleasurable experience if the only time you are touched is to be
washed, toiletted and dressed by a professional.

Pleasurable sensory experiences can be offered
by sex aids, erotic material, and massage, and severely disabled
people who cannot masturbate or who have trouble meeting a sexual
partner may inquire about taking these experiences one step further
by using prostitutes. For every 20 callers to Spod on this subject,
just one is likely to go down this route. In Holland a sexual
surrogacy service is subsidised by the state – disabled people can
use part of their benefit to pay trained sex workers. And while
this practice is unlikely to be replicated in this country in the
near future, Spod warns people who do turn to prostitutes to look
out for their safety, to make sure they know what they are doing,
and not to expect an ongoing relationship from the liaison.

The independent living movement grew because
disabled people wanted choice and control over their lives.
Compulsory celibacy is not consistent with a full and
self-determined life, and disabled people have as much right to
express their sexuality as everybody else.

After all, as Woody Allen once observed, sex
is the most fun you can have without laughing.

Inequality barrier

Chris Davies is a wheelchair user with
cerebral palsy and a speech impairment. At 56 years old, he has had
four relationships none lasting more than three months. “I am much
less experienced in dating skills than someone of my age would
usually be. My relationships have not been successful and this
failure adds to my lack of confidence.”

Davies has not led as segregated a life as
many disabled people. For nine months of the year for five years,
he boarded at a school for children with cerebral palsy. Sexual
activity among pupils was forbidden. “Sex became a covert activity.
I don’t think anyone in the school had sex with each other. It was
more about groping in dark corners where you could not be
seen.”

Back at home, Davies had non-disabled friends,
but again sex wasn’t on the agenda, for him at least. At a party at
a friend’s home he watched while everyone paired off, leaving him
to do nothing but watch. He was about 24 before he had sex for the
first time.

Lack of successful relationships led him to
turn to prostitutes, but he has become disillusioned with this
“quick fix”. “It does nothing to help self confidence. It is also
ridiculously expensive and hard to access. As a disabled person I
have been humiliated quite often, but being turned away by a
prostitute must rank among the worst humiliations I have
experienced.”

Inequality, says Davies, is the biggest
obstacle to a disabled person having a sexual relationship. “I am
not considered an equal to someone who has no disability, as a
potential lover and sexual partner.

“Sex in the lives of some disabled people
might be a taboo subject, but this is mainly because it is made to
be by other people. Even if they want to have sexual experiences,
plenty of other people will get in the way of this happening –
parents, family, teachers, care workers. All have their own agenda
which they consider to be of help to disabled people.

“Until one of us does insist upon our right to
be equals in society, which includes being sexual individuals, then
inequality will still exist.”