Monday 25 September 2017

HSE denies tetraplegic girl (10) right to go to the toilet

The HSE is responsible for ruining Alex Butler's life, and it tried to limit her attempts to get back that life too

LIVES FOREVER CHANGED: Alex Butler outside court in 2013 with her parents John and Sonya
LIVES FOREVER CHANGED: Alex Butler outside court in 2013 with her parents John and Sonya
Brendan O'Connor

Brendan O'Connor

Alex Butler missed a lot of milestones but she smiled right on time. There are certain things she can't do, but with assistance she can swim, horse-ride and ice skate. She is good at maths and reading, and she loves her fashion. She is a daredevil too. She is mad for roller coasters. Alex does not just exist, she lives. I had the pleasure of meeting Alex when she appeared on The Saturday Night Show a couple of years ago. She was only eight then, but I can say without a hint of condescension that she was a star. That smile charmed the hell out of the audience, and Alex was a bright, cheeky, fun and extremely likeable.

There are a lot of people who would assume that because Alex Butler is tetraplegic, and has cerebral palsy, that she should be happy just to exist. But Alex, and her family, have what those people might feel is an unreasonable expectation. They believe Alex should have a life, that she should have fun, get an education, strive at things, succeed at things, and even fail at things. Alex will need help doing all those things. But then, don't we all?

The assumptions that people make about children like Alex Butler were highlighted in the case that Alex, through her parents, fought with the HSE over what kind of a life she deserved. Alex's mother, Sonya, summed up the attitudes of the HSE to me on the radio last week when she said that the HSE questioned whether Alex really needed assistance to go the toilet when she could just wear incontinence pads. Alex is not incontinent, but someone thought that it would be good enough for her to sit there in her own waste, rather than having the dignity of going to the toilet, if it would save a few bob in Alex's claim against the people who caused her to be how she is.

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