The Clare Inclusive Research Group started up on 25 March 2008. Relationships was one of our three main issues (along with A Home of Our Own and Planning our own Holiday Break).
Everyone in our research team signed consent forms and took part in a focus group. We made a drama out of these stories, called “No Kissing” about a woman who got into trouble for kissing her boyfriend. She ended up moving to another service, but ‘never got chance to say goodbye’ to him.
This was presented to the Irish Sex Education Network AGM in December 2008 and it made a major impact. By March 2009 we had been invited on to Kenny Live with parent, Frieda Finlay and ISEN’s Áine Ní Aileagáin, to talk about Sex Education for people with Learning Disabilities.
On the train up to Dublin that day, our research supporter Rob Hopkins first told us about the law and how intimate relationships were illegal for people with a learning disability. That is it’s illegal unless you are married or living without support. So that’s most of us. I was dumbfounded. ‘Is it because I’m Down syndrome that no.one’s told me this before?’ I asked.
After this we talked to people with disabilities in the ISEN (now known as Connect People Network). They told us about problems they were having with parents stopping people going out and social workers having to do assessments and we said what we’d found out about the law. We made this into an interactive drama called ‘Leaving home’ where a couple run away from home and the guards try to track them down.
We presented this to a conference on Relationships and Sexuality in Dublin in October 2009. People joined in, took different roles and said things like ‘We want to get into relationships, not go to gaol’ and ‘Just cos I’ve got a learning disability it doesn’t mean I can’t learn. I want to learn how to look after my girl.’
The National Disability Authority were also presenting and we heard from them about the idea of ‘capacity’, like having to prove you can live independently without support before you can have a sexual relationship. We don’t agree with this. You may need support, but you can still have a relationship.
In 2010 we took part in the first all Ireland study by people with a learning disability into relationships to find out what people themselves thought (Relationships and supports study: People with intellectual disabilities in Ireland. Dublin: NIID Trinity College, Dublin: National Federation of Voluntary Bodies, Inclusive Research Network 2010) In it, people said they wanted the chance to have a relationship; sometimes they may need support and they do want training.
In March this year we were invited by Patricia Rickard.Clarke, the Law Reform Commissioner, to talk about making changes to the Criminal Law (Sexual Offences) Act 1993. This consultation included service providers, managers, social workers and psychologists.
We said the capacity (or ability) of a person with a learning disability has been affected by people treating us like children and not giving information about things that affect our lives.
We know that some people might still not understand, but when none of us are told it’s like saying ‘You’re no good. You can’t think.’ That’s wrong. Only by doing research with Trinity College and the National Federation of Voluntary Bodies have people begun to take us seriously and really ask what we think. So now they know we do have abilities and we can think!
When we first looked at the law, we were surprised. Some of the language was very bad. We want people to understand what the law says about us and help make it easier for other people to understand. We said the Law should use everyday language. We said words like ‘gross indecency’ were confusing, that ‘buggery’ was a very offensive word and that ‘mentally impaired’ and ‘disorder of the mind’ were disrespectful and totally unacceptable.
We challenged the law and we asked for support to help us get respect for the choices we make about our relationships. We said that we are being encouraged to be part of our local communities, to get jobs and our own houses, but this law which stops us having intimate relationships is wrong.
We said this law has never been openly explained to us and it has made people around us, like family members and paid supports, afraid of being open with us about sexual matters.
Through our research we know this law is against the United Nations Convention (2006) on the Right of Persons with Disabilities. Article 23 states that: ‘State Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others.’
The Commissioner explained to us that a new capacity bill is being written, and that the old one dates back to a Lunacy Act in 1883; that’s how long it has taken for the law to change. A new law is being prepared and they would value our help in making recommendations to it.
Darelle O’Keefe, a Law Reform Commission Legal Researcher, wrote to us after the consultation: ‘It was a great opportunity for us to hear the practical difficulties facing …. people who are directly affected by Section 5 of the 1883 Act.’
Doing the research has given us great confidence to speak about these things to people. In three years we’ve made great strides. Hopefully other people with learning disabilities will hear about this and get involved doing their own research. It’s changing our lives and the way other people think about us.