Sexuality and Disability

A Guide for Everyday Practice

Elaine Cooper, John Guillebaud

• Publisher: CRC Press
• Year: 2017
• ISBN:
  9781315343488
• Edition: 1
• Topic: Medicina
• Subtopic: Teoría, práctica y referencia médicas

Sexuality is an integral part of every person, but it is often difficult for people with a physical and/or learning disability to express their sexuality as they wish. This book provides a clear explanation of the issues concerning sexuality and disability for all professionals working in these sensitive areas.

CHAPTER 1

Counselling and sexuality

When counselling any person, disabled or not, about issues relating to sexuality it is important to ensure that the work is patient-centred and it is carried out with sensitivity, because these are very personal and private areas of a person’s life. It is an area where individual choice is paramount. It is essential that the views of the professional are not allowed to intrude upon the consultation and that it is non-judgemental.

People need to be assured that confidentiality will be upheld at all times and that except where the personal safety of another individual is at risk (e.g. abuse), information will not be revealed. Alongside this, of course, it is important that privacy is available, both visual and auditory.

Where people with disabilities are being counselled there are other areas of concern to consider. The most obvious of these is accessibility. In the 1990s new buildings are required to have disabled access but in some older buildings this is not possible. In these circumstances it may be that there is a need to take the service to the person (e.g. by visiting at their home, day centre or training centre). It is important to have a venue where privacy is guaranteed and uninterrupted by other family members or staff. Counselling on a ward with only curtain screening is inappropriate as although visually screened, the consultation can be overheard by other people on the ward.

Physical disability

Comprehension for people with physical disabilities is not a problem unless there is impairment of understanding, which may be due to head injury, stroke or more advanced stages of some neurological diseases. It is, of course, essential to communicate in a clear way using normal vocabulary and not medicalised jargon. Where vision or hearing is impaired it is important to be aware of this so as to assure that communication is good (e.g. when a general practitioner drew pictures about a method of contraception for a blind woman it was not helpful! Both the woman and the doctor became exasperated at their lack of communication and understanding). It is important to ascertain from the client how they are best able to communicate (e.g. if lip-reading is essential ensuring that the counsellor’s face is in a good light and turned towards the client).

Some people are aphasic and communicate by other means such as Makaton signing or using a Bliss board^* or a computer. It is for the counsellor to take a lead from the client who will be experienced in their chosen mode of communication.

Learning disability

When working with people with learning disability, ascertaining that they have fully understood what is being said is essential. They may not have the words to communicate their feelings and needs. Enquiry as to their words (e.g. for parts of the body) is important so that real contact can occur. In addition, some people need time to assimilate a question and it is important to allow them to formulate an answer before another question is asked. It is important to work at their pace and to ask single questions rather than complicated questions with choices. For example, for some people asking, ‘do you mean x or y?’ can be too complicated, whereas to be asked about x and a reply given before y is raised provides real answers. The usual style of open-ended questions may be too difficult and counselling styles may need to be adapted. Unless these adaptations are made the response may be incorrect or ‘I don’t know’ or sometimes a completely unrelated response may occur like ‘I am going out to tea today’. These responses may mean ‘I don’t know’, or may be an escape route to closing a difficult or painful topic.

Sometimes, carers, professional or family, may wish to be involved in the consultation. It is important to ascertain that the client is in agreement with this. The client may ask for the carer to be present as this increases the client’s confidence. Carers undoubtedly have concerns and anxieties, not least their responsibility to the client, and this can sometimes mean that the carer may take on a high profile in the consultation and speak for the client, even when they can communicate for themselves! It may be very important to involve the carer, especially where assistance in implementing actions explored in the consultation may be necessary (e.g. changes in behavioural patterns). This is particularly so where there is only short-term memory and the consultation quickly forgotten.

Where there is severe or profound learning disability, issues about consent need to be investigated - most especially informed consent. An assessment of competence is necessary. It is essential to work within an ethical and legal framework, in the person’s best interest.

Of course, as in the non-disabled population, there will be some people who will have anxieties about their sexual orientation. Because of some attitudes to same-sex relationships, exploring these anxieties can be inhibited by fear of prejudgement by the professional. Where there are fears about attitudes to disability it compounds the difficulty. People with learning disability may lack the words or other skills to access help. Those working with such people need to be aware of this. In general psychosexual services it appears that consultations concerning gender are increasing. These issues arise for people with disabilities too and there is a tendency for them to be brushed aside and not to be addressed. This does the individuals a disservice: it is often quite difficult for people with learning disabilities to have their questions taken seriously.

^*Makaton: a form of sign language. Bliss board: a board containing squares in each of which is a symbol, letter or phrase used to aid communication.

CHAPTER 2

Society: the climate in which we live

There is a tendency for the ‘the disabled’ to be lumped together as one homogeneous entity, whereas, of course, each person with a disability is unique in both their personality and disability. There may be similarities to others with the same diagnosis, but above all each person should be considered as an individual. Many people who have disabilities are discriminated against or feel discriminated against in most areas of their lives, not least concerning their sexuality. ‘I did not think people who are disabled would be interested in that sort of thing’ or ‘Disabled people don’t do that (have sex) and if they do, they shouldn’t’. This is sometimes summed up as ‘society’s attitude’ as if society is an entity itself. We need to remember that we are all part of society, so must bear some responsibility for this attitude. Disabled people and their partners are also part of society and not separate beings. Where a disabling illness or accident occurs, these preconceived thoughts and feelings can damage or inhibit a sexual relationship. ‘Sex is for the young, beautiful and athletic’ seems to be the media message. If you are young, beautiful and athletic, then it is fine, but it leaves out many people including vast numbers of the general population, the so-called ‘normal’ population, many of whom do not fit the image and experience discomfort about their appearance or body image, by being too fat, too thin, too short, too tall, and so on.

For people with a visible disability the defined media image is distorted, as it is too for people with learning disability who may have a different facies and behave in a manner that does not fit the stereotyped image. Elderly people can be sidelined since after a ‘certain age’, sexual activity is not expected to occur. This age tends to increase as the age of the ‘observer’ increases! People who are wheelchair users often say that people only see the ‘chair’, they do not see the person in the chair. They become the disability plus John or Mary, rather than John or Mary who happens to be disabled and has the same anxieties, pleasures and needs as everyone else with perhaps some extra difficulties in addition.

Confronted with someone with a disability some people will endeavour to ignore the disability altogether. This is difficult for the disabled person as their disability is an integral part of them and need not, and should not, be ignored. Because we are all part of society, these attitudes affect partners, potential partners, parents and other carers and the professional and thus, as a consequence, the person with the disability.

Case study A

Anne, a young woman who had been blind since she was 3 years old, expressed great relief that she had a home visit from the family planning doctor. She felt unable to attend a clinic as she felt everyone would stare at her (although she could not see them) and be thinking or saying, ‘what is she doing here in a family planning clinic, surely she has no sexual relationship, she is blind’.

Case study B

Bronwen stopped attending the clinic to have her IUD (intrauterine device) checked. On being contacted by the receptionist she confessed to feeling embarrassed at having to attend since her second leg had been amputated. She felt her gait was more obvious now she had two artificial legs. ‘Everyone watches me walk across the waiting room and wonders how I come to be there when I am disabled/ She felt uncomfortable being clumsy when needing to get on to the couch for examination, especially if she felt the need to remove her artificial limbs.

Where there is a congenital disability or a disability has arisen in childhood there is a tendency to be protective and to see the person as being suspended in childhood (see Chapter 7). Where a child has a learning disability this attitude is more pronounced. The skills individuals with a learning disability have are variable. They may be five years old with respect to understanding and feeding themselves, but show other levels in their speech and other life skills. But adolescence occurs, and the concomitant hormonal changes will produce body and emotional changes as in all young people (see Chapter 7). However, there are some myths around sexuality and learning disability. These vary from ‘no sense and so no feeling’ to ‘at it all the time’ and ‘will breed like rabbits’. Another widely held view is that ‘if you do not tell them about sex they won’t do it’. Any of these misapprehensions leave the person very vulnerable.

Talking to parents of people with learning disability, they are concerned that their children will be exploited by others and taken advantage of. This may be in the form of abuse (see below). They are anxious that their daughters will become pregnant and that either sex will contract infection, especially HIV and AIDS. To deal with this there is a ‘lock up your daughters’ response from some in an endeavour to keep them safe. This then denies the person the opportunity to form relationships and broaden their experience of life. An alternative to this limiting way of dealing with the situation is to give the person information and guidance to prepare them and so reduce the risks of exploitation and abuse, unplanned pregnancy and infection.

When working with people with learning disabilities, during a consultation it is frequently found that there is a great deal of ignorance or misunderstanding in their sexual knowledge concerning the body’s function and behaviour. It is often apparent that there has been little sex education or perhaps it was inappropriately delivered. For example, it may have been given to a group where it is difficult to meet individual needs. In those circumstances it may not have appeared relevant to them. There is often a need for sex education in the consultation which is done on a one-to-one basis. There are obviously many restrictions in providing one-to-one education for everyone in schools or colleges because of constraints on time, staff and finance resources. It is possible, of course, that information has been given and forgotten, especially if it did not seem relevant. It is clear that for many older people with learning disabilities provision of sex education would have either not been considered or it would have been deemed irrelevant, as it was perceived they would be unlikely to have sexual relationships. It has been noted by staff working with physically disabled pupils in mainstream schools that the latter seem to feel that the sex education given to the non-disabled pupils is irrelevant to them.

The impression is often given to people with learning disability that they are ‘being naughty’ if they try to indulge in sexual relationships or activity, and although this feeling of naughtiness can add a frisson of excitement, it often brings feelings of guilt and the need to hide. This situation can be all the more difficult when the person may not have the language ability to express what they feel.

Not infrequently, the client will hasten to say in a consultation that ‘it’s not dirty’ as if to dispel that suggestion and to be reassured. There can be very conflicting feelings when the desire for a relationship exists, and fear that there will be punishment for this behaviour. It would appear that, in some cases, those in responsibility (parent or professional carer) are understandably anxious to maintain the well-being of the person with the disability, to protect them from consequences and the need to avoid potentially risky behaviour and relationships. This anxiety in the parent/carer is often perceived as disapproval by the person with the disability, which makes it difficult for them to ask for help or guidance for fear of being ‘told off’.

Another factor that increases the client’s vulnerability is the tendency for people with disabilities to be told to behave themselves, to keep ‘quiet’ and to do as they are told. This engenders a feeling of ‘must comply with instructions’ and lays the person open to exploitation or abuse.

Case study C

Carol, a young woman with mild learning disability, reported that she had been raped by a person in responsibility who insisted on having sex with her. She did not want this to occur but felt unable to say no. She also explained she felt unable to make a sound and call for help, not because she was ‘frozen’ and lost her ability to speak, as is common in this situation, but because she was afraid that she would be told off for making a ‘noise’. It would seem this young woman had been given information that was unhelpful in an emergency.

Closely related to this attitude is the issue of consent, which must be informed consent. When people have a disability and need medical or nursing intervention and intimate body care, it becomes ‘routine’ to be touched by others. Consent to such treatment should have been sought and given, but there comes a point when consent is implicit and compliance accepted. This means that in some ways the disabled person’s body feels like ‘public property’. They need to be assured that they are autonomous and they do not have to consent to anyone doing anything to them. In other words, it is within the person’s right to say ‘no’. They do not have to go along with any sexual approach made to them, the criterion being ‘do I want/like this person to touch me in that way?’. Personal space is important and should not be inv...

Table of contents

• Cover
• Title Page
• Copyright Page
• Contents
• Foreword
• Preface
• Acknowledgements
• Author note
• 1 Counselling and sexuality
• 2 Society: the climate in which we live
• 3 Emotional factors
• 4 Practical problems: ‘how to do it’
• 5 Fertility
• 6 Contraception
• 7 Young people’s special needs
• 8 Some specific disabilities
• 9 A further look at learning disability
• Index