Self advocacy

Contraception for women with learning disabilities is a controversial and little discussed topic. The silence is an overhang from the days when people were segregated to prevent their becoming parents. We don’t need to go to those lengths now we have the technology to prevent conception.

But of course things have changed. Now we have bold statements like this one from Valuing People Now published in 2009:

People with learning disabilities have the choice to have relationships, become parents and continue to be parents, and are supported to do so.

And the 2006 UN Convention on the Rights of Persons with Disabilities (CRPD), ratified by the UK in 2009, also upholds disabled people’s rights to found a family and to decide on the number and spacing of their children (Article 23).

In practice it is far less simple than this. Michelle McCarthy found that the women she spoke to typically had ‘just in case’ contraception, even if they were not in a relationship; started contraceptive use earlier and continued it later than other women; and had little agency in the decision to use contraception in the first place, which type to use, and for how long.

I have never forgotten reading, courtesy of John Pring that the women who were systematically raped by Gordon Rowe, the proprietor of the LongCare residential home in Buckinghamshire, were given injectable contraception in the lavatory off the reception area every month while the GP chatted to Rowe. And I was shocked when interviewing a GP in leafy Oxfordshire to be told that she had discontinued her predecessor’s practice of visiting local residential homes to administer contraception to all the female residents. This was in 2012. Good for her, but how many other GPs do what her predecessor had done? We have no way of knowing.

A team at the Open University pursued the question about contraceptive choice. With the financial support of the Open Society Foundations, we interviewed 19 women who had the label of learning disability and who were using, or had used contraception. Finding them was difficult. Most agencies we approached, and this included advocacy organisations, declined or failed to respond. It was only through finding two organisations where managers recognised this as important that we could find women to approach for an interview.

Our other challenge as researchers was that women frequently were taking contraceptives to manage menstruation, and did not recognise that they were using contraceptives. Nor did they necessarily know which contraceptives they were using.

Whether they had made choices about using contraceptives was a moot point. Some women clearly had made informed choices, and described declining to use them when they were not in a sexual relationship. But for many there was a mixture of persuasion and threat, expressed well in this quotation:

I never want children, would be too hard for me and social worker would take them away.

Several women who were using contraceptives to manage periods reported that they were ineffective - but had never had the opportunity to report this to their GP, and request an alternative.

Overall, it was a pretty bleak picture, and one which raised almost as many questions as it answered. It certainly suggested that those bold statements about rights cannot be taken at face value. And for me it raises questions about the contribution long term, and rarely reviewed use of contracption might be making to the low life expectancy of women with learning disabilities - 60, as reported in the Confidential Enquiry, even lower than that of men with learning disabilities.

You can read the report in full here, including references to the research base.

Open University Report into Contraceptive Choice