Expert blog: Sex, intimacy and disability for young people with life-shortening conditions

Have you ever put on some sexy underwear before going on a date? Have you ever watched pornography, or read erotic fiction? Do you own a sex toy or a vibrator?

These questions might seem frivolous or inappropriate (this is a University blog post after all), but they are not!

Most of us have the privilege of keeping details about our intimate lives and sexual desires confidential, but this luxury is not afforded to everyone, not least if you are young, disabled, always viewed as vulnerable and have been told that you are not going to live.

A ‘new’ population

Children and young people with life-shortening conditions were not typically expected to reach adulthood but over the past 20-30 years, advances in medicine, treatment, and care now mean that increasing numbers are living longer. The emergence of this ‘new’ population means that issues as such as sex and intimacy, dating and relationships, fertility and having children have come to the fore.

The Sexuality Alliance

My research forms part of the work of the Sexuality Alliance, a group of individuals and organisations including young people, family members and carers, and health and social care professionals such as youth workers, nurses, and doctors. The Alliance was set up principally as a policy response to the needs of the palliative care sector and other organisations that provide support for children with these conditions. Children’s hospices – which had typically only catered for the needs of younger children – began to recognise the demand to extend their services to provide ongoing support to young people as they transitioned to adulthood.

Identifying the problems

Our research has shown that young people are typically just unsupported and ignored. Families and carers felt unprepared – they had been told that their children would die, but they were continuing to live, becoming teenagers, and then adults. Professional staff were either unaware (or too embarrassed and unwilling to address the issues) or really wanted to, but were anxious and uncertain. It was then that the Sexuality Alliance took shape, and we set about to address the challenges that young people face in securing the support they need to express themselves fully as human beings. All the research has been co-produced with young people themselves, and with the individuals and organisations that support them.

Some of the challenges

Young people with life-shortening conditions face numerous challenges in realising their sexual and reproductive rights including:

1. the right to sexual expression and to be recognised as a sexual person;
2. the right to information and sex education;
3. the right to take risks and to be (potentially) harmed;
4. and the right to privacy, dignity and respect.

Most of our research participants have told us that speaking to us is often the first time that they have been able to explore issues of sex, sexuality and intimate relationships. These are young people who often have contact with many different types of professionals during their lives – teachers, nurses, doctors, social workers, youth workers, physiotherapists, play workers, occupational therapists – and so on. And yet – quite often - not one single person has thought to ask them about their sexual and reproductive health.

Sex and relationships education – which is the right of every child in the UK – is often also denied. As part of our research young people have told us that they had received limited sex education. Where young people have received it, they’ve told us that it was insufficient and always designed for the able-bodied – or as one young person described it ‘the standard healthy person’ – never addressing their experiences, needs or differences as disabled people. Other young people told us that they missed out on sex education because they were too ill or in hospital and could not attend lessons. Prolonged and regular absences from school often meant that it was difficult to catch-up. Some young people also told us that they had been withdrawn from sex education – typically by parents – who believed that it was unnecessary for their child. This is a form of protectionism which seeks to safeguard children and young people from harm, but can actually do more harm than good in the longer term.

Responding to the problems

In addressing the challenges these young people face, one of the main policy drivers of this work has been development of the Guidance and Standards – this landmark document provides key standards for health, social care and education staff who work with this group and is now widely used in practice by statutory, voluntary and independent agencies. The materials in the Guidance and Standards have underpinned the training and development that we’ve provided to organisations and teams that work with this group of young people.

Recognising and supporting the sexual and intimate lives of young people with life-shortening conditions is not an optional extra—it is a fundamental part of respecting their humanity. As this population continues to grow, so too must our willingness to listen, to learn, and to challenge outdated myths and beliefs about disability, vulnerability and sexual desire. Through collaborative work like that of the Sexuality Alliance, we can ensure that young people are empowered to express themselves fully, enjoy meaningful relationships, and have their rights to sexuality, dignity and autonomy upheld.

Dr Sarah Earle is Professor of Social Science at Nottingham Trent University.

This blog post is based on her  Inaugural Lecture “Intimate Matters: Let's talk about disability, sex and reproduction”.