Relationships and sexuality support

Sexuality is not often an area people are open about. For me, it is about finding out where that person is in the beginning and never assuming what the experience of this young person is. It’s also about not having any judgments. Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

“Many [teenagers with a spinal cord injury] are terrified about what lies ahead for them in relationships and with sex … But the issues for teenagers are very much the same for everyone else. Having a spinal injury takes you back to ‘I’ve got to start again’ and ‘How do I map my body?’ and ‘How do I know what I like?’ It’s important to go back to the element of play. That’s often what I’ll talk about – let’s start playing again. I put it back onto a level playing field and normalise it.”
Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Relationships and sex are huge issues for all young people and those with a spinal cord injury have the same desires, aspirations and anxieties around relationships that everyone else does. However their relationship to their body has changed and it is common for their self image and confidence to drop. Some young people have said they don’t feel like sex and relationships are possible in their lives anymore or that they can’t believe anyone will ever fancy them. They need to hear the message that they are capable of being attractive and part of happy, healthy, loving relationships just like everyone else is. Schools should help tackle this message early on in a young person’s return.

“Changes in sexual function are common after spinal cord injury, but we know from experience that people do go on to form romantic and sexual relationships, and it is possible to build a family and have children. It’s important to let people and their families know that this is possible. Some parents wonder, ‘Are my children going to have relationships? Will I have grandchildren?’ There may be some hurdles or prejudice but people need to receive good information when the time is right from a trusted source about the potential changes in sexual function after injury, how these may affect them, and what help or options are out there.”
Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Discussing relationships and sexuality – including sex education – with children and young people with a spinal cord injury can seem an intimidating, awkward prospect. Indeed, many disabled young people have reported finding sex education classes presented in such a way to be irrelevant and discouraging, which can add to the feeling that sex and relationships are not possible for them. It is vital that children and young people receive relevant, accurate, and positive information about these issues in a sensitive, inclusive way.

“As an adult with a spinal cord injury, people are more likely to talk about sex. Whereas with a child or teenager, it’s one of those things that unfortunately does still get left out. People ask what is the appropriate age to start talking about these things but there isn’t one – it’s very much dependent on the individual and what they want to know. I think any age you could start with sexual education and the earlier the better – it just needs to be age appropriate.”
Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Here are some ideas on how schools can support this area of work:

1 Provide a key worker or staff member for the young person if they want to talk about relationships and sexuality. This should ideally be someone they are close to and who they can bring questions or concerns to. Ensure this staff member has access to information or other support networks to find out answers to questions the young person may have (resources are listed below).

2 Challenge discriminatory attitudes in school, particularly the idea that it is taboo for disabled people to have sex, relationships and families. Present positive images and role models that dispute this idea. This is a message that should be presented early, sensitively and regularly.

“One thing that’s important is to talk to a young person about things like masturbation even if they’re not going to feel it. When they go to school and all their friends are talking about it, they can still be included and still know what they’re talking about. They may not feel it but what they are going to get is what people are talking about at school.”
Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

3 Ensure sex education classes are done inclusively and sensitively:

a. The teacher may want to speak individually to the young person before the session to discuss any concerns or to find out any pertinent questions in advance. Young people may not want to participate in sex education classes and may prefer to receive information or talk to a counsellor at school or a key staff member they
are close with.

b. Support teachers to find out what is relevant and important for a particular young person’s situation. Pertinent information may relate to physical (eg erogenous zones, increased or decreased sensitivity, sensuality, physical dysfunction and possible adaptations, contraception options), practical adjustments (‘How do I get out of my chair?’ ‘How can I be intimate when I have a catheter bag?’) and emotional (feeling unattractive, unsexy, anxious) questions.

c. Sex education classes should be run so that they are relevant and pertinent to all students who are accessing them. Disabled students should not be excluded from sex education classes.

d. Remind students that all people are individuals and what one person may enjoy, another may not regardless of disability.

e. Students with disability have a right to receive specialist sexual health and education information. However they should also be given the information that everyone is given, as well as any additional handouts or resources that are particularly relevant to them.

f. Ideally, the information that may be particularly relevant to a student with a disability should be presented and offered to all students. This means one student is not singled out or separately acknowledged. If the information is integrated sensitively into a session, it can help everyone have a more equal, inclusive
perspective on sexuality.

4 It can be daunting to try to start a relationship with a person who is always accompanied by another adult. Ensure support staff are not constantly present, giving the young person room to form relationships and develop their own identity with their peers.

5 Support families to allow their child to grow up, develop and participate in ordinary teenage experiences. Some parents or families may become overprotective of their child after an injury and need support in allowing their child to make choices and take risks that all teenagers make. Some families may find discussing relationships and sexuality particularly difficult. More information on organisations and networks that
support families can be found in section five.

If you are a young person and want to find out more about relationships and sex, visit section 4.d of our toolkit.

Resources

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