Monthly Archives: January 2016

Making choices about contraception – or not

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

 

 

 

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Families, learning disabilities and the state

Today family members and self advocates and other people who care about people with learning disabilities travelled to Southampton in driving rain in the hope of seeing justice done, for Laughing Boy and for the many others who have died unexpectedly, and without proper investigation at the hands of an uncaring NHS organisation. The justice has not yet arrived. I believe that it will.

After much deliberation I did not join them. I could not face the early start, and the lengthy journey, around a choc a bloc M25 on a Monday morning. Instead I decided to use the time to try to say something useful. Here’s my attempt.

Sara Ryan’s courageous campaign has highlighted many shortcomings in the way people with learning disabilities are treated. One of these is the demonization of families who speak out, challenge, argue, and try to secure a better life for their relatives. She has been described more than once as ‘toxic’. Her courage has emboldened other families to describe their own treatment at the hands of professionals. On the face of it this hostility is mysterious. The social care system relies on families doing most of the caring. If they did not it would most certainly collapse. And, professionals should have the best interests of people with learning disabilities at the heart of everything they do. This is true also of most if not all families. So why the animosity? I don’t think I have an answer. I can show it has a long history.

In the early twentieth century there was no attempt to hide the belief that families were to blame. Mental deficiency was inherited, so it was believed, therefore it was legitimate to treat families with suspicion, and keep them at arms’ length. The ‘colonies’ in which many people were warehoused to prevent them having children were often in remote locations, hard to reach by public transport. Visiting hours were restricted to once or twice a month. Families never got to see behind the scenes, where their relatives lived. And outgoing mail was censored. What is less known is that when people were ‘ascertained’ as being ‘mentally defective’ but remained with their families, those families were kept under surveillance. Living with family was probably the situation for the majority of people, as it is today. Officials would visit once a month to check up on the families. There was a standard form to complete, issued by the Board of Control. It asked about the family’s income, the number of bedrooms, the cleanliness of the home, the ‘character and conduct’ of the defective, health, employment, leisure activities. It also asked about the ‘supervision and control exercised over the defective’. This included the question:

Is the general supervision sufficient to minimise the risk of marriage and the precreation of children?

Families were, in effect, expected to be jailers. If they failed in this, there was a likelihood that their relative would be removed.

The Visitors’ comments were sometimes quite sympathetic. They could recommend that some small material comfort was offered, a clothing grant, money for dentistry. But often they were highly judgmental. This comes from a form completed on a young woman in 1946.

She (the mother) was hostile and rude …. She is a foolish woman …

This language is not unusual.

After World War 2 there was a gradual change in the language used. It becomes noticeable that around 1950 pity rather than condemnation begins to creep into official language. ‘Poor little souls’ and the like. And there grew a recognition that families deserved support in caring, hence the growth of day centres, respite care, and residential facilities. There are some good stories from this period. Ann and Michael Tombs recalled that as Mencap activists they had direct access to David Clifton, Bedfordshire’s Director of Social Services in the 1970s,  and a lot was achieved. But more often families had to battle to be heard, and many services which, in today’s language, had been co-produced, with the active support of families, were gradually taken over by Social Services, and the sense of partnership was lost.

In the 1980s the advent of self advocacy ironically gave professionals and statutory services the perfect excuse once again to keep families at a distance. The argument that families had no place in decision-making for adults gained traction, and was underlined by movements like Citizen Advocacy which argued that people needed an entirely independent advocate who could help them stand up for their rights – including against over-protective families. At one level you can’t argue with this, but it set up an unhelpful dynamic, which has been exploited by Government, for example setting up 2 Forums in the wake of Valuing People, one for family carers, and one for people with learning disabilities. The two work together, but the split makes it more difficult to speak with one loud voice

At the same time Government accepted the arguments of the Disabled People’s movement for equal citizenship to be achieved through giving individuals budgetary control. Direct Payments and Individual Budgets were supposed to be a device to further the choice and control of people with learning disabilities – maybe even give them independence from their families. In practice, as Mark Neary’s  blog illustrates so well, they have passed the care manager job over to families. But, as Mark’s blog also illustrates, those families are under surveillance, and, if they appear to be failing to control their son, daughter, brother or sister,  are still in danger of having their relative removed, with precious little say in their destiny. That shocking photo of the young child standing at the gate of the Assessment and Treatment Unit trying to speak with his older brother which trended over Christmas is not so far removed from the treatment of ‘Emily’ a patient in Leavesden Hospital in the 1940s. Emily had a young son – he was the reason she was incarcerated. Emily’s mother pleaded to be permitted to take the boy into Leavesden to see his mother. She was refused – on the grounds that it would not be good for him to know his mother was a ‘mental defective’.

What I have been trying to show here is that animosity to families has a long history. The Laughing Boy Campaign shows that it is still disastrously present. Staff in Slade House did not listen to the family’s concerns about their son’s epilepsy. They kept the family at arms length, and condemned Connor’s mother. He died. This behaviour would not have been out of place in the mid twentieth century. I still do not understand why.