Lifting the taboo on talk about sex

Just because you're disabled doesn't mean you don't need intimacy, close friendships and sex. But few people seem willing to acknowledge this. Marianne O'Malley reports.

'As a disabled person married to a non-disabled person, we find that people refer to my husband Robert as my carer or my brother - they never consider that he is my partner. And this is the experience of many couples in our situation. Disabled people are, in effect, desexualised by this process. Although attitudes are improving, there is a long way to go."

The experiences of Selina Bonnie, disabled activist and academic, illustrate some of the issues to be discussed at a conference this Saturday. Aimed primarily at disabled people and their partners, the conference will deal with the question of barriers to their sexual and relationship choices.

Bonnie believes disabled people don't get sufficient medical and educational information or services in relation to their sexual expression. She also thinks society continues to segregate disabled people.

"Transport, education, employment and social and leisure facilities remain largely inaccessible to people with disability," she says. This means they are denied meaningful social and personal interaction with their society.

Dr Tom Shakespeare, outreach director of the Policy, Ethics and Life Sciences Research Institute at the University of Newcastle, and co-author of The Sexual Politics of Disability, is one of the keynote speakers at the conference.

"The problem is disability is never seen as having anything to do with sex. The disability movement has failed to put sexuality on the rights agenda. Issues such as poverty, housing, transport and employment are the major priorities, whereas personal problems - such as loneliness, isolation and low self-esteem - seem harder to campaign about," he says.

"Most people are not looking for sex itself - they are searching out intimacy, warmth, validation, connection, relationships. They are looking for physical touch, something often lacking in disabled people's lives."

For Freddie White (22), an independent wheelchair-user living in Dún Laoghaire, Co Dublin, having a girlfriend and a relationship is a distant ambition. First, he would like to get on a full-time training course to increase the possibility of a job and a career. Maintaining and even expanding his social circle is another immediate priority. "I suppose, like anyone my age, I'm a bit scared about asking a girl out," he admits. "But I'll pluck up the courage one of these days."

Despite daily frustrations, disappointments and frequent encounters with bureaucracy, White meets the world with graciousness and courage. He recently got his European Computer Driving Licence.

Travelling to college each day was a daunting and hazardous journey as he negotiated road-works, building developments, skips and machinery left on footpaths.

"I've lost count of the number of times I've been tipped out of my chair by man-made obstacles," he says.

But, he adds, it was worth the effort: he made new friends at college and enjoyed both the study and the social life. However, the only training option available to him this year is a home-study course in desktop publishing. Freddie now spends isolated days at home trying to motivate himself without the stimulation of tutors or the solidarity of friends.

His social life is similarly fraught with problems. "A group of us recently went out to dinner in Temple Bar, followed by a club," he explains. "I was really looking forward to it. It was the first time I was ever in a night-club, but I didn't like the atmosphere. Although it was accessible, the club was jammed and I couldn't move my chair. Nobody noticed. I suppose I didn't feel safe or confident."

Niall Crowley, chief executive of the Equality Authority, who will chair this Saturday's Sexuality, Disability and Relationship Conference, says, "A holistic approach is needed to allow people with disability the resources to give full expression to their humanity. For far too long, the area of disability and sexuality has been surrounded by taboos and prejudice."

The conference, organised by the Forum of People with Disability - in association with nami, the national association representing people with an intellectual disability - will also, according to Deirdre Carroll, nami general secretary, "continue and develop the debate on the current limitations in the law for people with an intellectual disability. And will take a very broad look at sexuality, examining a variety of issues including sex education, gender, difference, parenting and rights."

Raising awareness of the issues surrounding disability within the wider community continues to be a primary theme of the 2003 European Year of People with Disability.

It seems to be working: disability campaigners and lobby groups are finally being heard, and people are becoming more aware of the abilities and talents of the disabled community. We are even beginning to acknowledge the more obvious barriers that prevent their participation in mainstream Ireland. This groundswell of genuine understanding is leading us slowly towards developing a society that accommodates and facilitates all people of differing abilities in accessing a more inclusive life.

People with disability, through their open and dignified journey towards self-expression, are helping us to question our society's negative assumptions, which have limited the potential of people with disability to live emotionally complete lives, including the right to enjoy and celebrate their sexuality. Dr Shakespeare says: "Sexual rights for disabled people are not an optional extra. They are at the heart of what we are fighting for."

For further information on the conference contact: Forum of People with Disability, 21 Hill St, Dublin 1; tel: (01) 8786077; e-mail: inforum@indigo.ie; www.inforum.ie