The Simon Heng Column

Ashley is a nine-year-old American girl, who responds to her environment in much the same way as a three-month-old baby. Her parents love her very much; so much that they want to avoid the difficulties that will come with her being a severely disabled adult.

With a mixture of medication and surgery, her parents and her doctors have stopped her growing up, so that they can continue to pick her up without using hoists, and so that they can reduce the chances of pressure sores that come with increased weight. Her uterus, breast buds have been removed, “to reduce her discomfort in later life”.

They call her their “Pillow Angel”, because she is confined to bed, and because they believe she generates love within the family.

Should we be shocked by this? Drastic medical treatment, without the individual’s consent, performed – partly – to make her parents’ caring easier: isn’t this an abuse of human rights, like sterilising people with learning difficulties (which until recently was routinely performed in some European countries)?

Or is it the logical extension of a parents’ duty to ensure the future comfort and health of their child, like the painful and hazardous treatments that children born with spina bifida routinely undergo?

Ashley’s parents have cared for her, with love, for nine years. Any parent who cares for a severely disabled child will tell you that the caring gets more difficult as their child grows up, and that they fear that things will only get more difficult as time goes on, and the parents themselves get older and less able. In a country where there is no welfare state to speak of, help with care is as much a matter of family finances as they are about practicality.

For this family, there are no easy decisions, and the choices they have made  seem extreme.

We have no right to judge them by our own standards, but the fact that they have chosen to publicise their choices force us to address the issues around how we care for and treat people who cannot make informed decisions for themselves.

Related article
Is it ever right to stunt the growth of a child to make caring for them easier?

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