Guest post: Court tells disabled woman: just wet yourself

This is a guest post by Indigo Jo and originally appeared here.

Ex-ballerina Elaine McDonald care ruling ‘shameful’(with video)

I wasn’t aware of this case until I read earlier today that the Supreme Court had refused it: Elaine McDonald, a 68-year-old former ballerina who lives in west London, who had been left disabled by a stroke in 1999, had been challenging the decision by her local council (Kensington & Chelsea) to cease to provide night care in case she needed to use the toilet, providing her with incontinence pads instead. She is not incontinent. (More: Where’s the Benefit?, Disabled People Against Cuts.)

Hearing about this, I cannot help but think that whoever made the rules could not have imagined that decision-makers would even consider telling a person who is not incontinent to just wet themselves but Michael Mandelstam, in his recent book How We Treat the Sick (the link is to Amazon UK, as it’s about the British health system), it’s become sadly common in some places for nurses to tell patients who cannot get up to use the toilet to simply do it in bed. On reading this I sent out a tweet saying I couldn’t believe any nurse would tell a patient to wet the bed rather than attend to them, and was told (by a disabled woman who had seen the inside of hospitals on several occasions, as had several of her friends) that this was nothing compared to what she had seen and heard about. As one might expect, Ms McDonald said she was horrified at the original decision and found today’s court decision very upsetting, while another Supreme Court judge noted that it would enable authorities to deny people care related to toileting during the day as well.

Of course, some disabled people are incontinent, and providing incontinence pads is a perfectly proper and necessary form of care for them, but some say it’s the worst aspect of being disabled — I read an article about Judy Mozersky, a woman who became “locked in” after suffering a brain-stem stroke while at college, and when asked what was the worst aspect of her condition, that was the one she named. That they would ask a continent person to lie in their own urine and faeces for hours demonstrates that they have no idea of what that means. It is particularly distressing for an elderly person who has lost much of their independence but not that, or for a child who has fairly recently become continent. I recall how distressed I was when expected to put a plastic sheet on my bed when starting at boarding school, not having had such a thing at home and not having wet the bed for four years. And it has been noted that some people who are not incontinent find it impossible to pass urine into a pad (E. Collingridge, 2010), and that in such circumstances, a catheter might be appropriate. This could result in prolonged discomfort (or possible medical repercussions) and sleep problems.

I do hope this does not result in the needs of elderly disabled people being pitted against those of younger people with disabilities; the needs of the elderly are a media-friendly issue, as they can be portrayed in the popular press as people who have paid taxes all their life and then left to sit in their own urine by the uncaring professionals, bureaucrats or whoever, which is not so easy with younger disabled people. The judgement, like the original care decision, is clearly based on ignorance of the consequences for Ms McDonald’s health and that of all those who might be affected, including the more severe hygiene requirements to prevent skin breakdown and infection. Surely, political intervention is vital.