In relationships, sex and sexual health,
people with disabilities often face barriers that prevent access to
information, support and opportunities. Claire Lightley is Head of Training at sexual
health charity, FPA, managing a team of trainers delivering courses around the
UK. We spoke to Claire about FPA’s programme of work supporting professionals
who work with people
with learning disabilities.
What led FPA to focus on the rights of
people with learning disabilities?
We’ve been
doing this work for more than 30 years. When we started, people with learning
disabilities mostly lived in institutions. The work FPA did was different at
that point – we were partly responding to the sexual abuse that went on in
institutions and, at first, our work was based around risk, abuse, assessments
and supporting people who had been abused.
Over the years,
our work has evolved. I started here 18 years ago, having previously been a
care worker for people with learning disabilities. I joined FPA to work on a
project to develop a training course for professionals with the aim of focusing
much more on the positive aspects of sexuality. It talked about risk and
safeguarding (protecting the health and rights of individuals, especially protecting children and vulnerable adults from abuse and neglect), but the aim was to focus on pleasure. That reflects the
tone of our work now.
Learning
disability work is a massively important area for FPA. We have a lot of
experience of supporting people with learning disabilities directly and we’ve
written many publications supporting staff in this area. We would never sit
down and look at a five-year plan or think about our mission without including learning
disability work. It is really at the forefront of what we talk about.
How do you support professionals working
with people with learning disabilities around sex and relationships?
We offer a
range of resources, including the ‘Talking together’ series of
books, which is popular for work with younger people. We also developed a DVD
called ‘All about us’, which is a programme that professionals can support
adults with learning disabilities to work through, either in group settings or
on a one-to-one basis. That’s used widely in schools, colleges and care
settings.
We offer policy
writing, so we often go into organisations and help them to write a sex and
relationships policy. It’s really important for the safety of the clients and
for the staff.
We also offer
an open programme of training. For example, there is an introductory one-day
course in which we look at policies and case studies and we cover basics like
the law, safeguarding, and capacity to consent.
Twice a year, we
run a more intensive five-day course. Throughout the first four days, attendees
plan, develop and practise a piece of work that they want to deliver with
people with learning disabilities. Then they go away and deliver it, write it
up, and they come back and do a presentation and assessment on the fifth day.
It’s a hugely popular course – it’s always full.
What kind of issues are highlighted by
the people you train?
Masturbation
always come up. We run a really popular one-day course focused on masturbation.
It’s probably the one thing we get most enquiries about in terms of our work
around learning disabilities. Any service working with people with moderate to
severe learning disabilities will have some issues with masturbation – public
masturbation or people hurting themselves trying to masturbate. We look at
risk, safeguarding, and consent, but we also look at how you teach someone
about public and private, and how you teach someone about masturbation. Some of
the people they’re working with might never have a sexual relationship with
someone else, so we get people to really think about pleasure for people and
what that means, within the law and safely.
Issues around
how to work with parents come up a lot, particularly when people are working
with adults. Some professionals are very worried about doing this work and then
a parent being upset or angry that their child has been taught about sex and
relationships.
The other thing
that comes up a lot is access to opportunities for people with learning
disabilities. Attendees might tell us that the people they work with don’t have
the opportunity to meet other people. We often talk about creating
opportunities and we also talk about dating websites and apps, because some
people with learning disabilities are using them.
What does good practice look like for
services working with people with learning disabilities around sex and
relationships?
Relationships
and sex education (RSE) is going to be statutory in the UK from 2020. That
means every school, including schools for pupils with special educational needs,
will have to include RSE on their programme of work. My hope is that schools
will really look how they can incorporate it – not just once a term, so if you
miss it you don’t get the information, but look at how it can be delivered in
bite-sized chunks.
In terms of RSE,
good practice is repeating work. It’s having something consistent, ideally
weekly, every term, so young people have a chance to really think about things,
discuss things, ask questions, and have information repeated. It is so
important for people with learning disabilities that work is repeated and to
have a chance to go over things.
In care
settings, often what happens is that these issues are only looked at when there’s
a problem. We would like to see professionals being more proactive, for example
in setting up groups for people, and not just holding one session on sexual
health, but covering the whole area of relationships.
What can sexual health services do to
make clinics more welcoming to people with learning disabilities?
Over the last
couple of years, we’ve worked with two London hospitals, one in Kingston
and one in Hackney,
and we’ve helped them to make their sexual health services more suitable for
people with learning disabilities.
Largely, the
things they changed were often around environment and timings. For example, making
sure that people with learning disabilities had an hour-long appointment, rather
than the 10 to 15 minutes you would usually get with a health professional. Because
of the way you have to explain things, people need much more time.
We helped the
services to think about the environment of their clinic too. When you walk in,
what’s happening in the service, is it noisy? Quite often there are televisions
on in the waiting room of clinics, but a lot noise can sometimes be difficult
or disorientating for someone with a learning disability. Both of the services
decided to hold clinics at different times than they usually would, so there
wasn’t anyone else in the building and it was much quieter.
We gave the
staff some training around what it might feel like to come into a clinic with a
learning disability. We also ran training around visual materials, how to use
them and how to describe things to people with learning disabilities.
What do you think is the impact of the
work you do?
Hopefully we
make some professionals think about sex and relationships as not just being
something that’s risky, but as something pleasurable – and realise that we
should be talking more about pleasure and promoting that for people with
learning disabilities.
Although sex is
important and we talk about that very openly, we also promote the importance of
relationships for people. Mencap use this statistic: only 3% of people with a
learning disability live as a couple, compared to 70% of the general adult
population. I hope the work we do helps to change mindsets, and highlights that
people with learning disabilities can have relationships, they just might need
a little bit more support to do it.
For more information on FPA and its
services, visit: https://www.fpa.org.uk/
This eFeature appeared in the December
2018 edition of the Eurobulletin.