Supporting People with Learning Difficulties in their sexuality Sex and Learning Difficulties Dating Teaching Materials FAQs Sex and Learning Difficulties In recent years, major changes have taken place in the way we think about people with a learning disability, and in our approaches to their needs and those of their families. We now recognise that adults with a learning disability should be acknowledged as real adults whose individual requirements need to be met without undue segregation. Generally, everybody involved with the care of people with learning difficulties is ldeally trained in this area, without exception. However, still those people with learning difficulties are still abused and many left without full access to sexual expression. One aspect of adulthood which most of us take for granted is the right to be sexually active. There are two contradictory myths which contribute to people with a learning disability not being included in this right: People with a learning disability remain forever childlike and “innocent”, whatever their actual age. We do not associate sexual expression with childhood; by extension, we do not see it as appropriate for people labelled as having a learning disability to express themselves sexually. People with a learning disability may have very strong sexual drives and appetites, but this may be accompanied by very poor self control, so that they can be a danger both to themselves and to other members of society. Neither of these ideas is helpful to people with a learning disability or to their parents and care-givers. All human beings are sexual beings. Sexuality is not an optional extra. Everyone has sexual needs, feelings and drives. The question here is: How can we help people with learning disabilities to channel their needs, feelings and drives to get pleasure and enjoyment from their close personal relationships, and provide them with protection from other encounters which are exploitative? Learning about sexuality is a life-long and often haphazard process. Babies learn, from birth onwards, about the bodily pleasure of being warm, being cuddled, being tickled and interacted with. We learn from watching the ways in which our parents show affection to each other; we learn from spoken and unspoken messages about private parts; also from films, advertisements and soap operas on TV. Sadly, it is often the case that youngsters with learning disabilities only get a very negative form of sex education — “Don’t do that, it’s not nice!” “Stop touching yourself down there; that’s bad!” Not giving them any positive formal or sensible sex education does not mean that they don’t pick up many enticing ideas — but they need more sex education than most young people, in order to protect them from people who seek them out in order to exploit their ingenuity. Ignorance is definitely not bliss. Not knowing how to behave or the consequences of sexual activity, not knowing the difference between public and private behaviour, not knowing you “own” your body and can say “no” to touches you do not like, leaves people with a learning disability very vulnerable to getting into trouble, to abuse, or to exploitation. Proper sex education is therefore a particularly important factor in helping people protect themselves from abuse. Children with a learning disability grow up. Although puberty may be slightly delayed for those with profound or multiple disabilities, they go through the same process as any other child: boys’ voices start to break, body hair starts to grow, girls begin their periods, boys start to have wet dreams, mood swings become more extreme. All that is the biological process of puberty, which cannot be stopped, even if sometimes parents would want it to! However, adolescence is a social process whereby the youngster develops a personal understanding of his or her adult social and sexual identity. Frequently we deny that period of adolescence, and then adult status, to people with a learning disability. We cannot stop their physical maturity, but often with the best of intentions, we stop or curtail their sociosexual development. The result is a person who is physically an adult, but who has the social status of a child. What is the alternative, given that the people we are concerned with do have varying degrees of difficulty in learning and in understanding? Broadly-based sex education at all levels Access to counselling where necessary (for individuals and their families or carers) Social skills training about appropriate behaviour Consistency of response between home/residential unit and school/college/day centre Social opportunities to enable people to make and maintain friendships and relationships Education and practical help to protect vulnerable people from sexual exploitation by strangers on public transport and when out and about Environments in which people with a learning disability are treated with dignity and respect. Sex education, in the context of social education and health education, is increasingly being provided in ~ schools, on special needs courses in FE colleges, and in Day Centres. Youngsters and adults with a learning disability can gain a great deal of individual and social satisfaction from close personal and sexual relationships and in this they are no different from anyone else. They may, however, need specific counselling on issues relating to communication, contraception or parenting. Care should be taken to ensure that there is liaison between home and educational or work settings. Inconsistent responses only serve to confuse and make learning about appropriate behaviour more difficult. For example, open masturbation is a frequent source of worry to parents or staff. Masturbation is an extremely common human behaviour and is not harmful — in fact it can help to relieve the tensions which spring from sexual feelings. But persistent masturbation in public will get the individual into trouble. Careful and consistent teaching and training is needed to make it quite clear that this is an activity which should take place only in private. Surveys have shown that people with a learning disability tend to lead very restricted lives, only going out socially with members of their own family, or attending clubs where they mix only with those from the same Day Centre. Those who venture out into the big wide world face rejection and exploitation. If this is true for the person or people with a learning disability that you know, try to consider how their social and leisure opportunities could be safely extended. Groups and clubs are at last starting up. People First is a network of groups around the country run by and for people with learning disabilities, providing opportunities to socialise, train and campaign. http://peoplefirstltd.com/ To sum up, the vast majority of individuals with a learning disability develop normally as sexual beings. They may need more help to understand the bodily and emotional changes that occur as they grow up, but if we deny them the right to be sexual and to make and break relationships their lives are much poorer. Difficulties can occur when this happens and help should be sought from a qualified source. More expertise and literature aimed at people with learning disabilities is required and we are currently working on gathering this together. Dating The main dating club in Britain is Stars in the Sky and if there's no branch in your area then type the words “disco, learning disabilities” and your local town into google to find out what's available locally. Examples of the type of club you might find are called Beautiful Octopus, Squidz Club, Funky Flamingo and Bubble Club. People First is a network of groups around the country run by and for people with learning disabilities, providing opportunities to socialise, train and campaign. http://peoplefirstltd.com/ Teaching Materials Resources are kept up-to-date on www.SexualRespect.com/wordpress/resources/#lear More resources can be found on Living you Life— sex education and personal development resource for special educational needs now up dated and revised by Brook Talking together...about sex and relationships by Lesley Kerr-Edwards and Lorna Scott 2003 fpa Sex Education Forum leaflets Respond London-based organisation working around abuse and learning difficulties www.respond.org.uk You and I a social skills programme for people with developmental disabilities National Institute for People with Learning Disabilities, New York www.yai.org/services Holding on Letting Go by John Drury, Lynn Hutchinson and Jon Wright 2000 Souvenir Press Books Beyond Words a series of picture books produced by the Royal College of Psychiatrists and St Georges Hospital Medical School for adults and adolescents who cannot read or who have difficulty reading. Titles cover a wide range of subjects, including falling in love, personal hygiene and health, and sexual abuse. Suitable for 7 year olds and above http://www.rcpsych.ac.uk/publications/booksbeyondwords.aspx Downs Syndrome Scotland http://www.dsscotland.org.uk The Council for Disabled Children http://www.councilfordisabledchildren.org.uk/resources/cdcs-resources/sex-andrelationships-education-for-children-and-young-people-with-learning-difficulties Elfrida Society http://www.elfrida.com/publications.html Secret loves, hidden lives? — exploring issues for people with learning difficulties who are gay, lesbian or bisexual by David Abbott and Joyce Howarth. Policy Press 2005 Speaking Up published a booklet Sex and Sexuality in 2006 by people with learning difficulties. speakingup.org The Sexuality & Sexual Rights of People with Learning Disabilities by Paul Cambridge 1996 BILD www.bild.org.uk Sexual Health and Relationships —a review of resources for people with learning disabilities 2005 Health Scotland http://www.educationscotland.gov.uk/resources/s/genericresource_tcm4222735.asp DVD called You, your Body and Sex deals with masturbation and privacy, is animated and usefully explicit. Sex 1998 BILD Love Is...Highland Learning Disabilities and Relationships Group Let's Talk About Sex — Growing Up, Changing Bodies, Sex and Sexual Health 2001 Walker Books Cloth Sex Education Models Jane Fraser has updated her cloth models which she sells for sex education for young people with learning disabilities. http://www.bodysense.org.uk PLD Frequently Asked Questions My seventeen year old daughter with mild learning disabilities is in her final year at school. She is going out after school and meeting up with boys from school. How can I ensure she doesn't get pregnant when she denies she is having sex, and won't talk about it? Your daughter needs to have serious safer sex education so that she knows how to keep herself protected from Sexually Transmitted Diseases , as well as from getting pregnant. It will also give her the power to say "no" as well as "yes", and understand what she is saying "yes" and "no" to. It will protect her from abuse. Your daughter needs to absolutely understand the importance of insisting on safer sex at all times with any boy/s she has sex with. Boys will want to have unsafe sex with her so she needs to know how to have safe sex and insist on condoms. If she won't talk to you, ask her school to organize some sex education, or bring in an expert to spend time with the teenagers. That way, the boys will learn as well. It is important that this education includes feelings and the social aspects. Image in Action provides an education service in London and the South East. Staff can get trained by the or other agencies — see Resources. If the school is unwilling, you could perhaps find a professional counsellor to have a session with your daughter. Spend time reassuring your daughter that you do believe what she says, create an environment where she feels she feels totally accepted, in the hope she'll welcome your caring and non-judgemental advice. The FPA book "Talking Together About Growing Up" (Scott and Kerr-Edwards 1999) might help. My client, who has moderate learning disabilities, keeps exposing himself, and the police are giving him one last chance. Not knowing all the dynamics of this situation, what we say to health care professionals is that perhaps they need to be doing two things: Find an exciting new club where he may find a sexual relationship - this would provide him with some hope. Social clubs for people with learning disabilities are listed here. Look at the behaviour of your client to see if there are patterns to when this unacceptable behaviour is happening, which might indicate what brings it on. It could be boredom or attention-seeking. Has he had good sex education about Masturbation ? He needs positive reinforcement that Masturbation in a private place is OK. Discuss the situation with him, emphasising the potential consequences of it happening again. If there is a Community Learning Disability Team in the locality, get him a referral, as they may have trained experts in this area. Respond provide support and counselling for people with learning disabilities who have such problems and we suggest you call their helpline on 0808 808 0700 (also textphone). Also see their Help Site www.respond.org.uk Following a workshop on the subject, some of the women in our residential home are showing an interest in finding boyfriends. However, they say they have been put off sex by the behaviour of the men in our home, and they are not interested in the men in the home. Perhaps you (or a professional from outside) could do more workshops, perhaps dividing the women and the men. The women may know little about their bodies need encouragement to help them see that sex can be pleasurable. They need to gain enough self esteem to enjoy their own bodies, and take an active role in sexual encounters. The men need to look at the behaviour which is off-putting to women, and how to improve it, perhaps using roleplay. The rest of their workshop could be similar to the women's. People usually look outside the immediate vicinity to find partners and it is quite normal for people in the home to discard each other. Plus, it is sometimes better people in the same residential home don't form relationships because what happens when they split up? If possible, find a club or social group where the residents can make new friends and perhaps meet potential partners. Hopefully, you can provide the transport for them to get there and back safely. See our List of Clubs. Alternatively, hold a social gathering and invite people from other homes to come along. There are various schemes clubs use to provide social skills and STIHIV prevention training. Again, the Community Learning Disability team might help, and a multi-agency plan may be the best way forward. How can we provide sex education to a client who has profound learning disabilities, has no speech and is blind? We feel it would benefit the client no end, as they are expressing severe sexual frustration. You need to be absolutely certain of the client's wishes first and again, the Community Learning Disability team might help, and a multi-agency plan may be the best way forward, to establish and demonstrate that the client is truly providing informed consent, otherwise be against the adult protection policy, and be illegal. Some health care professionals decide to use a sex worker, once they have agreed that informed consent has been given. A good sex worker could teach Masturbation techniques and help them learn about the body of the opposite gender. Contrary to popular opinion, sex workers, like gay men and disabled people, are ordinary people like you and me, and most sex worker take their work seriously. See below. One of our residents goes out cruising, comes back to the home and has unprotected sex with male residents, and then jumps on the female residents, having anal sex with them. We live in terror of him spreading HIV throughout the home, but he refuses to get tested. This is a very common issue and you are right to be worried. Services are responsible for protecting people from risks but also for safeguarding their rights to sexual expression, so you need to work with him about his responsibilities to others regarding safer sex. You need to establish HIV and risk management guidelines. It is true that having an HIV test is something that individuals must consent to, and people with learning disabilities should enjoy the right to have sex and take risks, just like everybody else. However, the other residents have rights too - and this includes the right to stay healthy. So, first you need to work on an intensive programme to educate all the residents on safer sex. Practicing safer sex can be very difficult if the sexual partner is more able or more powerful than you, and this needs to be addressed. Residents should be given the option of having themselves tested for STIs. If things don't improve, i.e. the residents continue to have unprotected sex with your cruiser, more drastic measures will need to be taken to separate him from the rest. My client is becoming violent. He is a 55 year old heterosexual man with mild learning disabilities who has never had sex. We have established that he very much wants to have sex, and suspect this would improve his behaviour, but how can we make this happen? Your hypothesis that his aggression is linked to sex needs to be checked out by someone by looking at the pattern of behaviour. If he is in agreement, you could help him attend social groups so that he might find a partner, and/or discuss with him using a sex worker to have sex with him. Best use a member of staff who feels comfortable with the situation, and this person should themselves be supported. A local sex worker can be found by looking on www.tlc-trust.org.yj Clients with learning disabilities need to understand that the sex worker is not a girlfriend and will go away after the sex. Because sex is normally a two-way activity, it is best if you try to re-create this situation. This can be done by telling him to make the payment himself, which gives him some notion that he is making a valuable purchase like in a shop. He is paying for her time and travel time will be included if she is to visit. Your client may agree to pay out of his personal allowances. If funds need to come from his care budget, think carefully of the wording and take care. With regard to the law, it is not illegal to buy or sell sex. Since you are not charging for this service, it is not illegal for you to make the arrangements. However, the laws on prostitution are largely misunderstood and sex work often frowned on. So long as you and your team have discussed the fact that this is duty of care for the wellbeing of your client, and decisions have been recorded, there should be no illegalities surroundig consent. What should we to do with a resident who is learning disabled and unable to understand words, and masturbates regularly in front of everybody? There is not an easy answer. If the resident has an understanding of a symbol vocabulary e.g. wigit symbols or an understanding of Makaton or Signalong, then using very simple language the client should be told that it's fine for him/her to masturbate but that s/he must do this in a private space. A one-off chat isn't usually enough, and so it would need to be worked on in a variety of ways. They may have great difficulty understanding the concepts of 'public' and 'private', so much work is required with them around this using sign language, symbols, role play and anatomically correct dolls. The DVD called 'You, your Body and Sex' deals with masturbation and privacy; it is animated and usefully explicit.