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We must be careful to heed the wishes of people with learning disabilities

It is too easy to assume that someone who is dependent on others is incapable of making a meaningful life choice

By on Wednesday, 16 January 2013

The High Court ruled that a woman with learning disabilities had the right to decide the fate of her unborn child (Photo: PA)

The High Court ruled that a woman with learning disabilities had the right to decide the fate of her unborn child (Photo: PA)

I was pleased to read in the Telegraph that “a young woman with learning difficulties has won the right to decide the fate of her unborn baby after doctors lost their application to carry out an abortion without her consent”. When I first heard about this case, there were many questions I wanted answers to: why were the doctors keen to do this, when there seems to have been no question of the young woman looking after her baby? Why was adoption not mentioned? Was this covert eugenics or what?

The answers seem to lie in this latest report: the woman suffers from a sickle cell disease which has caused several strokes already and the medical team felt her life might be endangered by carrying a pregnancy to full term. We also learn that the woman lives within her large family circle which provides “a supportive network in which she functions well”. One would like to know if the doctors consulted the family before making their application.

What was most moving in this report was the judge’s ruling. He said it was important to bear in mind that people with severe learning difficulties who might not be able to function independently in the community “may very well retain the capacity to make deeply personal decisions about how they conduct their lives”. These could include “decisions about their own medical care including, as in this case, the continuation or termination of pregnancy”. So often in recent years one reads of judges who appear too anxious to conform to current attitudes on, eg, equal rights legislation. It is good to learn of a judge here who thinks independently and who does not bow to the kind of pressure which would assume that someone with a learning disability is incapable of making a meaningful life choice. I am not saying that getting pregnant in the first place was a good idea in this instance; but given that it happened, the woman should not be pressured by her medical team to abort against her will and against the interests of her baby.

I recall once reading neurologist Oliver Sacks’ 1973 book Awakenings, about a group of patients who had lived for many years in a semi-comatose condition as a result of contracting encephalitis lethargica; they had been survivors of the 1920s sleeping sickness epidemic. He discovered that a drug, L-Dopa, for a brief period, in the summer of 1965, brought them back to full responsiveness and mobility (the story was later made into a film with Robin Williams as Sacks). What the doctor found humbling was the way that the patients’ personalities had somehow remained intact despite their decades of mental and emotional withdrawal from the world. He respected the final choice they made: to return to their trance-like state and not continue with the drug; they had found the modern world too hard to adjust to.

Although this example is not the same as persons born with a learning disability, nonetheless there are parallels: “personhood” and “personality” operate at a level much deeper than rational behaviour and functioning, and those whom we would often tend to write off as insensible or incapable, might have powerful thoughts, desires, feelings and wishes that they find hard to communicate – and to which we do not always want to listen.

  • poetcomic1

      Just one correction.  In the film Awakenings the patients didn’t ‘choose’ to be comatose.  Tragically, the results of the L-Dopa were only temporary. It was truly heartbreaking. You have to be as careful discussing films with film buffs as you  are discussing eschatology with advanced theologians!