In this guest post, Godfred Boahen looks at an area of inequalities that we haven’t previously touched upon on the blog – reproductive rights, specifically in the case of disabled people.
In February 2013 the Court of Protection (COP) in England ruled on whether a woman called K should be forcefully sterilised. K was diagnosed with Downs Syndrome and the case at COP was instigated by her mother who feared that K would become pregnant without contraception. At the time of the hearing K was not involved in sexual relations. The Judge Mr Justice Cobb decided that forced sterilisation would not be in K’s best interest, thereby highlighting how formal rights can effectively protect people with learning disability.
In this post I want to introduce the legislation on which Mr Cobb based his decision, the Mental Capacity Act 2005 (MCA), and reflect on its implications for the reproductive rights of women with learning disability.
The Mental Capacity Act 2005 (MCA)
The MCA was implemented in England and Wales in 2007. The Act set a statutory framework for assessing decision-making capacity using the following tests:
- if a person understands what they are being required to decide upon
- if they understand the consequences of the decision
- if they ‘understand, retain, use and weigh up the information relevant to this decision?’
- if they can communicate their views to others
There are also five overarching principles in applying the MCA. As a start, the MCA states that everyone should be considered capable of making their own decisions unless there is evidence to the contrary. For learning disability advocacy groups this first principle is welcome because it reaffirms the legal status of the doctrine of informed consent. The MCA also requires that help should be provided to people to make their own decisions, and importantly, people should not be treated unequally just because they make what others consider ‘unwise’ decisions. Another underpinning rule of the MCA is that all actions done on behalf of incapacitated adults should be in their ‘best interest’. Lastly, according to the MCA, the least restrictive option should be chosen during interventions in the lives of incapacitated adults.
Even if some of these principles discussed above seem nebulous, they send a clear message that the MCA seeks to protect peoples’ autonomy. Notably the law requires that any ‘serious medical issue’ should be referred to COP. Like the tests of capacity outlined above, it is recognised that the meaning of ‘serious medical issue’ is open to judicial interpretation. However examples provided of these medical cases include withdrawal of life support for a person in a vegetative state and administration of ‘non-therapeutic sterilisation.’ The latter brings us back K.
Beyond formal rights
New formal rights may be bold steps forward but sometimes they have to overcome long-standing traditional views to be effective.
As my colleague Liz Tilley explained in this thought-provoking short documentary, learning disabled women were routinely sterilised against their consent in the post-war period. There is also a prevailing view in the UK that ‘next of kin’ (usually family) have a right to make decisions for incapacitated adults even though this has no backing in law. Coupled with societal attitudes that certain groups (such as learning disabled adults) cannot make decisions for themselves, professionals sometimes place family wishes above informed consent. In the case of K for instance Mr Justice Cobb found that in 2010, at the instigation of K’s parents, a hormonal implant was inserted in her arm under general anaesthetic without her consent being sought. The side-effect of the ‘traumatic’ procedure was such that the implant had to be removed. Subsequently K’s general practitioner referred her to a consultant who was willing to perform another sterilisation. Luckily the second procedure was challenged, hence the resulting COP judgement. It would seem therefore that medical professionals who one would expect to adhere to the doctrine of informed consent sometime succumb to parental pressure during deliberations about choice of contraception for learning disabled women.
There is sparse empirical evidence on how these decisions on contraception for learning disabled women are made because of complex ethical and methodological issues. The process of obtaining clearance from research ethics committees can be convoluted, then one has to elicit information from a group of people with low literacy skills and accustomed to being told what to do. For these ethical and methodological reasons, a survey published in 2012 by Sarah Earle and colleagues in Learning Disability Practice is welcomed for addressing this gap in our understanding. The survey results however paint a depressing picture. Although relatively small scale, Earle at al’s study found that a significant proportion of learning disabled women in the sample did not choose their contraception.
So the MCA is welcome but it may only be the start to changing societal attitudes towards the reproductive rights of learning disabled women. The change that is required is for professional practice with people with learning disability to be underpinned by values: gaining informed consent, empowering people to make their own decisions, protecting peoples’ rights in the broadest sense, and sometimes challenging families’ wishes if they conflict with the interest of service users. As a front-line social worker, I sometimes wonder whether in a period of public sector retrenchment, the need to enhance rights can be usurped by technocratic fixes.