I hate the terms “ableism” and “implicit bias.” They smack of linguistic and political trendiness. But now comes Britain’s National Health Service to show us what those words mean, and suddenly they’re menacing, not trendy.
As I write this, Alfie Evans still lives in spite of the best efforts of the NHS. I hope that he’s in the arms of his loving parents. Even a child with disabilities who’s been written off by his doctors deserves that much. As for the people who are trying to rush this child to the exit doors, Pete has summed them up nicely.
Alfie’s family didn’t ask to be in a position of having to defend their child’s right to nutrition and hydration, or to defend their own right to have custody of their son. But they’re fighting back, publicly. They’re telling their son’s story. That’s the least and the most they can do.
When health care providers for a disabled child like Alfie deem that care is “futile,” and when the child’s parents are then denied the right to take their child to another facility that has agreed to accept him, then I know the controlling ethic is “better dead than disabled.”
Don’t think this is a story from Britain that has no relevance here. When nutrition and hydration are considered to be medical treatments instead of ordinary care – and some states have written that into statute – the risk increases that what’s happening to Alfie could happen to anyone’s disabled child or parent or partner.
It’s asking a lot, for a family to surrender its privacy as a child is dying or critically ill. But no doctor or hospital or insurer or judge should be able to count on that privacy to screen them from scrutiny when it comes to denying food and water to a disabled patient. When that perfect storm of disability and bad law strikes, may we have the guts to tell our loved one’s story and to push back on the so-called experts, as Alfie’s parents are doing.
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