It’s great that people with learning disabilities now officially have rights to a family and relationships.
Historically, this has been a fraught issue.
The policy motivator until the mid-20th century was fear that the “feeble minded” would have more children than others, leading to “a terrible danger to the race”, as Winston Churchill wrote to prime minister HH Asquith in 1910.
At the time, there were two ways to prevent people from having children – keeping the sexes apart or sterilisation.
In the UK, segregation was adopted; involuntary sterilisation was never formally sanctioned. In institutions, men and women met only when supervised by staff.
Many people remained outside these institutions. What of them?
I was shocked to find government forms from the 1930s that asked officials checking up on those living with families: “Is it considered that the control available would suffice to prevent the defective from procreating children?” If the answer was no, placing them in an institution would be considered.
The pill was a game changer. Institution staff made sure women took it (many patients were probably unaware what it was for) and could feel permissive about heterosexual relationships between patients.
However, people in the community could not be relied upon to take the pill. The government refused to officially countenance involuntary sterilisation but there is no doubt it was widely practised.
I once interviewed a couple who in 1970 had asked their GP if their daughter, then 20, could be sterilised. She never forgave them for taking away her ability to have kids.
But, they asked, what were they to do? She liked sex, and they did not want the responsibility for helping her bring up children.
Related to this is the lack of support for well-woman issues – to say nothing of poor diagnosis and treatment for female-specific conditions and cancers
In Know Me As I Am, a 1990 anthology by people with learning disabilities, one contributor said: “People like us don’t have babies. No one at the centre does apart from staff. Some people have their stomachs taken out.”
Today, women with learning disabilities are nearly four times as likely to use long-acting reversible contraception (LARC) as other women – a rate of 46% versus 12%, according to Public Health England.
What little research has been done indicates these women are prescribed LARC (or other non-barrier methods such as the pill) at a younger age than others, stay on them for longer and, astonishingly, remain on them even if not sexually active. Reasons offered include “to manage menstruation” or in case they are taken advantage of. We do not know how many women are taking contraception for these reasons – we should.
What’s the message here?
At no time has the sexual health of women with learning disabilities been the primary concern.
Many would prefer it if women with learning disabilities do not become mothers. But the issue is bigger than a neglect of women’s desire to become parents.
It extends to a failure to protect from abuse, from sexually transmitted disease and from unwanted (by the woman herself) pregnancies. It’s a failure to provide support for women to have whatever safe and physically and emotionally rewarding sexual relationships they choose. It’s a failure to help draw boundaries to protect women from exploitation.
Related to this is the lack of support for well-woman issues – puberty, menstruation and menopause – to say nothing of poor diagnosis and treatment for gynaecological conditions and female-specific cancers.
The manager of a residential home once told me she was shocked that residents were not allowed out of their rooms between 10pm and 7am. Nowhere was this written down – it’s just what happened until she changed it.
When I asked about overnight visitors, she said yes – then added that families had a lot of interest and staff would have to check with them.
History tells us that looking at the policy is not enough. We need to look beyond what people say they do and at what actually happens.
Photo: Jacqui Brown/Flickr