Birds do it,
Bees do it,
Even educated fleas do it,
Let’s do it, let’s fall in love.

When Cole Porter penned the witty, euphemistic lyrics to his famous song in 1928, he could scarcely have imagined the extent of the sexual revolution that would sweep over the globe in the 20th century. Sex is fun, the lyrics proclaimed, and every living creature has a natural inclination to ‘do it’. Today most people would accept that we are sexual beings and that sex is as much about recreation as procreation. Homosexuality and bisexuality are openly discussed and are more accepted now than a generation ago.

If people’s attitudes to sex are, on the whole, liberal, there is still significant resistance to the idea that severely disabled people, especially those with learning difficulties, might have sexual feelings. This article will focus on some of the experiences of people with congenital deafblindness, as described by staff in Sense services.

Experience suggests that disabled people may well be regarded as asexual by most of the public. Some parents may find it hard to accept that their disabled son or daughter has sexual needs of any kind, even when they are mature adults. This is a very challenging area for all concerned, and we plan to focus more fully on the experiences of families in a future issue.

For staff too, it can come as a shock to observe sexualised behaviour among the people they support, in group homes and Sense day centres. Tracy Girling is a Senior MSI Practice Adviser, based in Exeter and one of a team of Sense staff trained as Sexuality and Relationships Advisers (SRA) to support staff working with these issues. “For staff who recognise sexualised behaviour,in people they support, a common initial reaction is, `We weren’t expecting this’”.

To what extent do congenitally deafblind people with additional learning difficulties have sexual feelings and needs? Can they really understand anything about sex and relationships? Do they have the right to express their sexuality and even ‘fall in love’ with another person?

If the average person were to spend time at a Sense centre or home they might well be unaware of any sexual needs among the people there. However, staff may well observe a different picture. For instance, at a Sense centre, 21-year-old Will has just discovered the thrill of masturbation. Such is his delight in this new activity that he wants to do it frequently, wherever he happens to be at the time. At another centre people have been observed in the ball pool, rolling the balls sensually between their thighs, or seeking sexual pleasure by rubbing themselves against the furniture.

At a Sense group home, Jan has learned the pleasures of masturbation and often used to initiate this in her shared lounge. Some staff have witnessed inappropriate curiosity about the opposite sex – such as young men who lift up women’s tops or try to touch them inappropriately. Occasionally staff have seen people make sexual advances to another person. One young man, who lives semi- independently and goes into his local town independently was brought home by a concerned neighbour who found him kissing a younger woman in the street.

It can be very challenging for Sense staff to handle these types of situations and to work out the boundaries between what is acceptable and what is not – as well as ensuring that people are safe. As everyone contributing to this article acknowledged, dealing with issues relating to sex and relationships among this group of people is probably the most challenging area of work that frontline staff face – and there are no ‘experts’ with all the answers. 

It is perfectly normal for most people to seek some form of sexual outlet according to Consultant on Multi -Sensory Impairment Mary Foster*. Mary has decades of experience of working with multiply-disabled people and has a particular interest in sexuality and relationship issues. “Development is often delayed in people with multiple disabilities,” says Mary, “but you can see from their behaviour that they get a rush of hormones like every other adolescent. You might get a young man who is visibly aroused and you can see from his face that he’s alarmed - `What’s happening to my body?’ How am I supposed to deal with this? Will somebody please help me?’” The hormonal storm may subside as people get older but sexual feelings rarely disappear totally.
* Mary Foster has now retired from Sense.

Is anyone literally asexual? As Linda Upson points out, “It’s very difficult to know exactly what some people experience because they can’t tell or show us.” Linda, whose role is professional skills development and SRA says, “Some of the most severely disabled people - those with cerebral palsy and profound learning difficulties for instance - may not have an awareness of sexual feelings, but we can’t be certain of that. We can’t make assumptions about their sexuality.”

Learning the facts of life

Congenitally deafblind people face an uphill struggle to understand their world, even without additional difficulties. As Paul Hart, Head of Research and Practice at Sense Scotland, points out, “Average five-year-olds know what gender they are, know that boys and girls have different bodies and that women with a `big bump’ are going to have a baby. No one has formally taught this, they have learned by observing and asking questions. This incidental learning is not available to people who can’t see or hear.” Formal sex education is a challenge too, for while there are some excellent resources for people with learning difficulties, these tend to be illustrated books or videos, which cannot be used by most of the people Sense supports.

Given these obstacles, it’s not surprising that knowledge of sex and relationships is usually incomplete at best. “Sex education in schools is very variable,” according to Debbie Snooks who supports training in these issues and is a SRA . “Some people have had no sex education at all. By the time people come here at 18 or 19, most of them have unresolved issues. Some people have been so poorly supported they don’t know what gender they are.”

Another Sense adviser described a young woman whose knowledge of sex and relationships was limited and even distorted - for instance, she thought she could get pregnant if someone touched her intimately or kissed her. Like this young woman, some people may enjoy soaps on the TV and learn a lot about life from this, but not necessarily understand the implied plot - such as what happens when two people kiss and cuddle, then go upstairs, and a few weeks later the woman is pregnant. A programme of learning was put in place for this woman who has a severe visual impairment but as her adviser explained: ‘”Her learning stalled when we were trying to explain male genitals verbally! We got hold of some anatomically-correct dolls but they’re made of cloth, and not to scale so they’re not very realistic when only using touch . We felt we’d let her down.”

How deafblindness affects sexuality

The issues may be more complex than better sex education however. Deafblindness with additional difficulties can have a profound effect on people’s self-awareness, proprioception (knowing where your body is and how to move it) and awareness of others. Shelley Thomas-Sanderson, started a programme of sex education with a small group of users, all of whom had some verbal communication. “We started out by showing them pictures of children, young and old people of both sexes, and asked them who they thought they were most like. We were shocked when Phil pulled out a photo of a baby boy. Phil thought he was most like this baby “because he’s fat.” We realised he didn’t even know how old he was. The group had very little understanding of their own age or gender so we had to change our thinking – this was no longer a course on sex education, it needed first to address issues of self-awareness and self-identity.”

At another centre, staff have similarly found that many individuals lack a sense of self. “We have people who use wheelchairs, for instance, who have never seen their feet”, says Debbie Snooks. “Others have seen their feet but don’t know that other people have them too. Some users have no awareness of other people at the centre, they relate only to the staff supporting them. For us it can be as basic as explaining to someone, `You’re sitting next to Darren, he’s a man like you.’”

Developing a sense of self

Sense is developing some creative approaches to issues of body awareness, gender and sexuality. At the Anne Wall Centre, Graham Nolan used his skills as a yoga teacher to get people to touch their and others’ bodies, for instance wiggling their toes, and training people to understand where they can’t touch. Everyone acknowledges this is difficult – staff provide intimate care for the people they support and it’s very confusing for deafblind people that what’s OK for staff is not OK for them. Graham has also brought in specialists to provide ‘rebound therapy’ on trampolines, which helps people develop an awareness of their bodies. 

Shelley Thomas-Sanderson has used samples of clothing to help her group understand the differences between what men and women wear, and for which occasions. This led on to the use of toiletries and grooming for men/women, another aspect of our sexual identity. Debbie Snooks has worked with people to make casts of their feet as part of learning about their bodies and has encouraged more able young people to discuss their “perfect girlfriend/boyfriend.” Anji Page from the Behaviour Support Team and SRA says that much of her work focuses on creating an identity for people. “Too often it’s the staff who choose clothes, hairstyles and things that give us our sexual identity. Our role should be to help people to widen their choices.”

When sexual needs become ‘challenging behaviour’

By far the hardest issues for staff to grapple with however are those relating to inappropriate sexual activities. Will and Jan, referred to above, are among many who have spontaneously learned to enjoy masturbation but have no idea that this is considered a private activity. How can they know this? As Debbie Snooks puts it, “We are pleased when people learn to satisfy themselves but we have to teach them it’s not OK in the canteen or the minibus!” But as Paul Hart explains, “It’s easy for people to hear the `no, not here’ without understanding the rest of the message, which is not what we want.” 

Teaching the difference between public and private space is an immense challenge, not least because, due to the nature of the disability, congenitally deafblind people are rarely on their own so ‘private’ is often meaningless. In the case of Jan, staff used objects of reference to indicate that she was to go to her bedroom when she needed private time and this eventually worked.

Staff have the additional challenge of interpreting and channelling the behaviour they observe. As Paul Hart says, “If someone flings his shirt off, does it mean he’s sexually aroused or he’s simply too warm, or even that he wanted a biscuit and no one gave him one?”

Staff can sometimes feel they are the source of sexual arousal, an uncomfortable position to be in. One Adviser described how she reassures staff that arousal is a natural response, and in the majority of instances this is not in any way related to the member of staff concerned, and has no sexual intent.  For people whose world is so shaped by how things feel or smell, it may be the stimulation of those senses that cause them to become aroused.  She described one man who liked to play games that involved a lot of touching hands, an activity that tended to arouse him. “We encouraged the staff to initiate high-fives and special hand shakes with him, which he also enjoyed, so that he had the pleasurable sensation of touch without it leading to arousal.” Another person would become aroused when stroking a certain smooth type of plastic, someone else when they received a head massage.

How far should we go?

Some types of behaviour raise very profound ethical and legal questions as to how far staff can go to support people to meet their sexual needs. The advisers who contributed to this article quoted several instances of people hurting themselves because they did not know how to masturbate safely. Some men have even been hospitalised after trying to masturbate against a hard surface, while there are instances of women inserting inappropriate objects into the vagina or stimulating themselves using things like hairbrushes. Some advisers have been called in to support people displaying immense sexual frustration because they have forgotten how to masturbate or they cannot reach orgasm because of premature ageing. As Paul Hart points out, “If we are not prepared to take responsibility for helping people to meet their own sexual needs safely, are we prepared to take responsibility for their admissions to hospital when they injure themselves?”

Sense policy is quite clear that people have a right ‘to understand the concept of self and to develop personal and sexual identity’ and to ‘develop and enjoy personal relationships’, including sexual relationships. The policy is equally clear that staff must support people to achieve these things if there is an evident need. But where are the lines to be drawn? Mary Foster explains, “We can obtain some very good models to help people to understand their bodies (some have been devised for health purposes, such as encouraging men to check their testicles for lumps). But not everyone can make the leap from a plastic model to their own bodies.” Or, as Anji Page says, “If we think a woman will benefit from, say, a vibrator, it’s a big ask for the staff to keep the equipment clean and hygienic if she is unable to do this for herself.”

Changes to the law have stretched Sense advisers to find a way to support people with the most profound learning difficulties. Mary says, “The Sexual Offences Act 2003 affected what we could legally do to support people. We can’t now interact physically with people who have not learned by other means how to satisfy themselves. We also have to tread a very fine line between providing sex education, which is legal, and `inciting sexual behaviour’ which is not.” In other words, staff have to be careful to respond to the behaviours and needs they observe and cannot suggest masturbation as an outlet, for instance. In Mary’s view, the Home Office had not considered the needs of deafblind people when drafting this legislation. Here is a group of people who have no option but to learn by touch and by experience.      

Do sex workers have a role here? Sense is aware of a disabled man who was supported to meet prostitutes. He felt unable to meet women in the normal way and felt rejected and isolated. He could be supported to use prostitutes because he had chosen this activity himself; the service provider would have been breaking the law had they ‘procured’ someone. The fact that there are risks inherent in this sort of activity is highlighted by the fact that the prostitutes exploited him emotionally and financially, but he still said the experience changed him, perhaps for the better. There are however sex workers who work for disabled clients and who claim to treat them with respect. One such was employed by a young man with a life-limiting condition who was supported by his hospice to use a sex worker; his story was filmed for television and he also wrote about his experience.

“In principle we should support people to do anything legal, otherwise we would be discriminating against them,” in Graham Nolan’s view. Graham is Community Services Manager and SRA and has a particular interest in the issues. “If someone showed an interest in pornography, for instance, we would probably do a `best interest evaluation’ to discuss whether this was appropriate and if we agreed it was, we would help them shop for it.” But the decision depends very much on the individual’s circumstances. “Pornography could cause confusion and misunderstanding among some people so they don’t have an automatic right to it. And we don’t have an obligation to teach people everything. If for example we think someone might be gay, that does not mean we’re obliged to point out gay porn.”  

Everyone contributing to this article was keen to stress that there are no “experts” in this challenging field, everyone is learning how best to advise and support staff. Tracy Girling summed it up: “Safeguarding is obviously important because the people we support can be vulnerable – but the need for them to express their sexual identity is equally important.”

What’s love got to do with it?

So far, readers may be forgiven for wondering where sexual relationships come into the equation. Sadly, the combination of communication and learning difficulties makes it very hard for many congenitally deafblind people to make relationships of any sort. Some people’s total lack of awareness of others has already been alluded to and there are cases of residents not knowing the names of people they have lived with for years. One manager described a young man whose family thought he needed a girlfriend but: “It’s clear he has no idea what the concept of a girlfriend means. He struggles to understand who he is and I think that’s the priority.” Some people are so disabled that they will never understand what a sexual relationship is and under the Mental Capacity Act of 2005, they would probably be deemed to be unable to give consent to such a relationship.

Even so, some people supported by Sense are quite desperate to find a partner. Debbie Snooks says that several young people she knows talk openly about wanting a girl/boyfriend, though their views might be quite naïve. “When one person met a girl at a club, we had to talk to him about what their friendship meant. He thought only of what she could do for him then within weeks he wanted to marry her, in part egged on by the staff at his home (not a Sense home). In the end the relationship fizzled out. ” As Debbie pointed out, staff can sometimes be part of the problem: they tend to get excited when someone finds a girl/boyfriend and then the gentle teasing (“Have you bought the ring yet?”) can put pressure on, which is not helpful.

Some Sense users have looked for a partner on the internet but as Tracy Girling explains: “People are vulnerable so if they want to get together with someone they have ‘met’ on the internet, then alarm bells start ringing for the staff who, are rightly concerned that the individual remains safe. People may not understand that `friends’ found via the internet aren’t necessarily who or what they say they are. We try to help by widening people’s relationship circles, by creating opportunities to meet people -  such as going to clubs, college courses, volunteering in the community - so that they can start to build up friendships with people they can trust. Our policy is that people with capacity have the right to make decisions that we may feel are unwise– but we have a duty of care to minimise any risks people take.”

How do you make a friend?

“How do you make a friend?” as Debbie Snooks put it. Sometimes, it’s a relatively simple matter of being introduced. Debbie says, “We had a hunch two young men at our centre would get on well so we asked if they’d like to meet then introduced them to each other. We supported them to get to know each other gradually and now they really enjoy each other’s company.” Elsewhere, other initiatives are being tried, like the music group, PRISM which meets every two months, led by a volunteer musician. Anji Page says, “This is very successful – about 25 people attend. We’ve held parties and even a summer ball to give people opportunities to meet others.” Specialist dating/friendship agencies may also have a role to play for some – see the article on page 29 and the resource list below.

As Linda Upson points out: “Many people have no relationships outside their support workers. We stress that staff aren’t friends however friendly they may be.” As everyone agrees, the staff “cannot be the big thing in people’s lives. We have to help them to have a life.” For most of the people Sense supports, whose difficulties limit them in so many ways, the real issue is not about discovering  “the joy of sex” but learning how to make true friends.

* The names and some details of the deafblind people in this article have been have been changed to protect their identity.

When Cathy met Frank

Cathy is in her mid-50s and lives in a group home with two other residents. For the past 14 years she has been supported in a relationship with Frank, whom she met on a seaside outing. Frank has moderate learning difficulties and lives semi-independently in his own flat. The manager of the home explains: ‘We support Cathy to meet Frank every Saturday when they enjoy private time in her room, then once a month she visits him in his flat. They also meet up at lots of other times like Valentine’s Day. They phone each other daily to share what they’ve been up to, have a laugh and have the odd argument!  She says she loves Frank and is very caring towards him but doesn’t want to marry him.

How Sense is supporting staff

All frontline staff attend a one-day course on sexuality and relationships. giving them an opportunity to explore the issues and their own reactions. A number of years ago Sense Scotland, in partnership with Common Knowledge, developed an intensive 10-month course called Batteries Not Included which was based on a publication of the same name.  Paul Hart says, “The course does not have all the answers but it does give people a chance to extend their knowledge and think deeply about the issues.” Sense Scotland delivered this training for eight staff, and in recent years, Sense have adopted aspects of this course and now has ten staff trained at this level as Sexuality and Relationship Advisers’’ 

New policies and procedures are now being rolled out. These envisage a key role for Sexuality and Relationship Advisers in supporting staff who are dealing with a difficult issue. A planning meeting would be arranged if necessary to discuss the way forward. The person concerned would attend and, if possible, lead this meeting together with people who know them well.  An action plan will then be drawn up for staff to follow. The plan is unique to that individual but it might, for example, cover provision of teaching materials, sexual aids, access to ‘adult’ films in someone’s room, or interventions like testosterone injections for men suffering from premature ageing.   

The planning process is also likely to look at other issues such as providing someone with support around relationships, the emotional aspects of this and physical and emotional health.

Sense is also working with colleagues round the world to learn from best practice.

By Hilary Todd

Resources

Sexual Health and Disability Alliance (SHADA) - a forum for professionals to discuss the issues. See the website for a list of resources - www.shada.org.uk

My lifelong desire by Nick Wallis. The Guardian, 15 Jan 2007. See: www.guardian.co.uk/society/2007/jan/15/health.socialcare

The Sexual Politics of Disability: Untold Desires by Tom Shakespeare, Kath
Gillespie-Sells & Dominic Davies (1996) Cassell.

Sex and Relationships for People with Learning Disabilities: A Challenge for Parents and Professionals by Ruth Garbutt. Mental Health and Learning Disabilities Research and Practice, 2008, 5 .

Sexuality and Disability – an academic journal devoted to psychological and medical aspects of sexuality in rehab and community settings. Springer. ISSN 0146 – 1044

Stars in the Sky – a London-based friendship and dating agency for people with learning disabilities. See www.starsinthesky.co.uk

Outsiders - www.outsiders.org.uk – a club for disabled people with events in several cities, helping people to find friends or partners. They do not accept members with learning disabilities. Their helpline on sexual and relationship matters was set up when SPOD closed (Sexual Problems of the Disabled was a charity advising mainly physically disabled people).

Sex aids for disabled people - www.spokz.co.uk

Dates-n-Mates – dating and friendship agency in Scotland for people with learning disabilities, run as a charity. See: www.dates-n-mates.co.uk

TLC Trust – a website that ‘connects disabled men and women to responsible sex workers, therapists and teachers’. The website has advice for individuals and professionals supporting them. See www.tlc-trust.org.uk

If you have been affected by any of the issues in this article and would like to speak to someone at Sense about this, please contact Sense’s Information Team on 0845 127 0066.

The names of Sense users have been changed to protect their identities.