Sexuality & disability: integrating the two?

by John Naudé


it is more likely that the sexual problems disabled people experience are due to negative and stereotyped attitudes in society and the associated feelings of lack of self-esteem

There is a great deal of research showing disabled people as being vulnerable to abuse

Many disabled people seek acceptance and worth through sport or through intellectual achievement

Everywhere in the world you will find disabled people. No societies are unaffected by disability, yet disabled people as a group still tend to be marginalised, hidden or ignored.

Disability is an issue that I believe many people are afraid to approach because it can affect all of us. No one is "safe" from the possibility that they may become disabled through age, accident or illness. Therefore it is often presumed safer not to deal with the subject.

Disabled people do not "fit in" with the criteria that humankind has created for itself. They receive messages telling them that they are not "quite right", and they can see that disabled foetuses are often terminated. This is not a message that encourages disabled people to feel positive about themselves or their value within society.

These negative messages can have a major impact on a disabled personís sexuality, and expression. This is because most people view themselves in relation to what other people think, and this view is very important in determining whether we feel positive or negative about our sexual identity and expression. So the messages received about being disabled can have enormous repercussions on how disabled people see themselves.

A question of worth!
Throughout history (and even nowadays) we can see that disabled people have been hidden in institutions, and not considered to be worthwhile. In Roman times, babies born with a disability were left out on hillsides to die. If they survived, then that would be viewed as Godís will.

We may feel times have changed yet in the UK the same principle has been applied to disabled babies over the last 40 years. I know that if I had been born in another hospital, a "professional" would have measured my abilities, and if I had not met his criteria I might have been left to die in a cupboard. I am now a married man, ordained as an Anglican priest, with various achievements that I can look back on with satisfaction.

Most people think of disabled people in a negative light. God, however, views us differently. Knowing we are part of His creation, and that He values us, can change our perceptions of each other and ourselves. In Psalm 139 it says: "For you created my inmost being; you knit me together in my motherís womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well" (NIV). As a disabled person I know that I am part of Godís creation, and I am fearfully and wonderfully made. This challenges the negative messages I have, and continue to receive. The feeling of being valued and worthy encourages disabled people to know that they have something to contribute to society, and helps them feel positive about themselves.

Humankind has created a system that judges "worth" by what we can contribute to the world. God does not. For we are all his creation and all seen as precious in his sight, not based on what we achieve but on who we are.

We all receive messages about our worth in so-ciety, and this can affect the way we feel about ourselves. If disabled people are not valued for who they are, then this can have detrimental effects on how they feel about themselves and their participation in society.

This in turn can make it difficult for disabled persons to acknowledge and express their sexuality. We often want to deny the sexuality of disabled people. We see the problems before we see the personís right to express their God-given sexual identity. We are all bombarded with messages of what is deemed attractive. Most of us know that we canít fulfil those expectations, although we continue to be influenced by them! What is deemed attractive in the media never includes images of disabled people. This continues to tell disabled people that they are unattractive and thus unacceptable.

Those who donít fit these physical criteria can aspire to other forms of attractiveness or appeal, such as sporty-ness or intelligence. In my role as a psychotherapist I find that many disabled people seek acceptance and worth through sport or through intellectual achievement. The former may hope to acquire the image of the conquering hero, overcoming his disability, whilst for those trying to prove their worth through intelligence, the image is of the mind compensating for the disability. Neither of these approaches will satisfy their needs. It is difficult for the disabled person to satisfy his/her desire to be wanted, valued and to feel of worth. Outside pressures can hinder a disabled person from feeling positive about themselves and physical attributes can contribute to a poor self-image. The question of ownership of the individualsí body is a major factor in not seeing oneself as attractive.

Whose body is it?
For some disabled people the question of body ownership can restrict their view of themselves as sexual beings.

With continuous help in dressing, undressing, washing and the management of continence, disabled people can begin to switch off from their bodies. As things are done to them rather than with them, the bottom half of the body becomes a separate entity, not owned by the individual but by everyone else who comes to help dress and change. Also mirrors are often waist high, and donít show the full body, which continues to feed this "separateness".

As disabled children grow up they become aware of their sexuality in the same way non-disabled children do, i.e., through television, cinema, gossip, magazines, etc. But their social activity is more closely supervised than that of non-disabled children and sexual expression of behaviour is often discouraged. Their sexual development can become distorted because of the attitudes of the people around them.

The non-disabled child gradually acquires "ownership" and respect for his/her own body. When he/she is small, care of the body is in control of the mother and is handed over as the child grows up. This affects self-identity as a sexual being. If that part of the body is not owned, there is no sense of pleasure, protection or ownership. Private parts are no longer private.

The risks of abuse
There is a great deal of research showing disabled people as being vulnerable to abuse. Perpetrators have been known to seek out disabled people for abuse, as they believe that no one will listen to the disabled person. There is also a common myth that a personís disability will make them "safe" from abuse. With poor body image, the need for personal care and a large number of individuals coming in to help with care, the risks of abuse are in fact heightened.

Perpetrators can also seek out those who are unable to communicate verbally, therefore restricting those who will listen and take action. However, a great deal of work is now being done with disabled people to allow them to "own" their bodies, and also in equipping them to express themselves when some inappropriate behaviour or care has occurred. Those involved in child protection are also being trained to listen to disabled people and acknowledge the high risk of abuse.

Creating relationships
The desire to be in a relationship is almost universal. The media also convey the message that those who are not in some form of a relationship are sad or weird. We are told that we are incomplete without a husband or wife, girlfriend or boyfriend. Until we meet that criterion we are missing something.

Disabled people receive this message and seek to comply by finding someone. Yet when their opportunities to meet people are restricted through attitude and access, this limits the opportunities considerably. The question of how non-disabled meet people is observed through magazines and television. These programmes generally donít really show the stages involved in building a relationship, particularly those that lead to a sexual relationship. The disabled person may try to imitate those images, and find that they fall short, or make wrong presumptions of what is the next stage in the relationship.

Sexual expression
Most people at some stage during their life worry about sex and sexuality. Disabled people can often feel that all their problems and insecurities about relationships and sex are a result of their disability itself. This understandable reaction is wrong on two counts. Firstly, it ignores the wider reasons why having a disability can cause poor self-image, as mentioned above. The second is that it assumes that non-disabled people have no emotional or sexual problems.

The reality is that everyone worries that no one will ever love him or her for who they are. These feelings may be harder to overcome for a person with a disability, but recognising them and understanding where they come from can help in dealing with them. However, parents, carers and teachers still seem very reluctant to openly and honestly discuss sex and sexuality as it applies to disabled people. In order to help understand why this may be the case, it is useful to consider some of the myths about sexuality and disability.

The "problems" relating to sex and relationships for disabled people may be caused more by negative self-image, lack of self-esteem and social pressures than necessarily by physical impairment or loss of function due to disability. Examining the following myths is an attempt to begin to understand some of the wider issues involved.

Dispelling the myths
Two myths, that

  • all disabled people are asexual i.e., incapable of having sexual relationships, and
  • disabled people are obsessed with sex and have uncontrollable urges contradict each other but come from the same starting point which is that because of their disability, all areas of a disabled personsí life are "abnormal".

    Another myth is that

  • disabled people are childlike and need to be protected from being hurt or let down.

    Families, friends, nurses, doctors and carers often encourage dependence. It is increasingly clear that disabled people need services, not protection. The attitude that disabled people need protection is restrictive and forces them to take on a "disabled" role. The fear of treating a disabled person as independent and sexual can reflect a non-disabled personís insecurity.

    The following myths relate to seeing "disabled" sexuality as different to "normal" sexuality, and often stem from a lack of knowledge:

  • Disabled people will always give birth to disabled children.

    In fact genetic disabilities occur in only a small number of births.

  • Disabled people should only marry and have sexual relationships with disabled people.

    This attitude limits the possibilities of developing relationships and defines someone as disabled and not as a person.

  • Parents of disabled children do not want their children to have sex education.

    Professionals often use this as an excuse for not discussing sex and sexuality. Whilst some parents (of either disabled or non-disabled children) may in fact be uncomfortable about sex education, this should not be used as a reason to deny people the opportunity to learn and express their feelings and concerns.

  • There must be something wrong with a non-disabled person who has a relationship with a disabled person.

    The non-disabled person may be seen as wonderful, caring, self-sacrificing, or as not capable of having a relationship with a non-disabled person. This myth again reflects a negative attitude towards disability and suggests that a disabled person is less worthy than a non-disabled person.

  • For the disabled person, it is better to have a relationship with a non-disabled person than with another disabled person.

    This myth is commonly believed by disabled people themselves. This is particularly sad as it shows the extent to which negative attitudes affect disabled peopleís views about themselves. The idea that a non-disabled person can be a status symbol again suggests that disabled people are less worthy.

    And finally, these two myths are concerned with sexual function.

  • Disabled people cannot have orgasms.

    In some cases this may be true, and certainly there may be decreased sensation in various parts of the body, although in some cases bodily sensations may even be heightened. This myth reduces sex to one particular moment, and ignores the fact that sex can be satisfying without orgasm and that sexual relationships are about giving and receiving pleasure.

  • Sexual problems must be due to the disability itself.

    While disability may make the actual mechanics of sex more difficult, i.e., finding a comfortable position, it is more likely that the sexual problems disabled people experience are due to negative and stereotyped attitudes in society and the associated feelings of lack of self-esteem. A willingness to take emotional risks and experiment is crucial to the ability to make and maintain relationships. It is important that both disabled and non-disabled people talk about these myths and their feelings if the question of sex and sexuality is not to be ignored and, consequently, to become a problem.

    As part of Godís creation disabled people are sexual beings and must have the opportunity to express their sexuality. Knowing that disabled people are part of Godís creation and are fearfully and wonderfully made, as are all people, can encourage them to express themselves and discover their beauty as part of Godís creation. By silencing the negative and destructive messages that disabled people receive they can be equipped to begin to reach their full potential and participation within society. And society will be better for it.

    Rev John Naudé, from the UK is Chairperson of Church Action on Disability (CHAD)

    Back to table of contents of ECHOES no. 19/2001