"For James Michael Taylor, an evening bath became a death sentence."
If you haven't been following the New York Times' "Abused and Used" series, you should be. It's the best major investigation of state care of people with developmental disabilities since the Post did its "Invisible Lives and Deaths" series more than a decade ago. Katherine Boo won a public-service Pulitzer for "Invisible" after her reporting fired up just about every elected official in Washington and forced turnover within the Mental Retardation and Developmental Disabilities Administration.
The Times work, primarily from Danny Hakim, the Albany bureau chief, is prompting similar calls for change. But I imagine a bureaucracy shift at the Empire State-level is far more difficult than just in a city. Seeing the effects of this New York reporting play out, in what feels like slow motion, it makes you wonder how care is faring here, years later. The journalism, as huge an effort may be extended, can only do so much.
I think the last few paragraphs of today's Times story touch the bigger equation. Beyond whatever buck-stoppers and involved players need to go, the success of any system — public, private or mixed — helping those who can't help themselves hinges on a society full of supportive individuals. Final paragraphs, talking to James Michael Taylor's sister:
She worries about the developmentally disabled who die and have no family around to push for answers for them.
“These deaths are marginalized because these sort of people are not valued by society,” Patricia Taylor said.
When she was in the fourth grade, she dreamed of taking her brother and running away with him, protecting him. She finds it hard to accept that no one was able to protect him after he grew up.
“I believe that God put these people here for a purpose, because if we didn’t have them to look after, we would lose our humanity,” she said. “How would we know compassion? It says in the Bible, do ye so unto the least of my brothers. I think that’s what it’s all about.”
The link, tellingly, is the Times'. Whether these stories seal the firings or not, this use of the megaphone makes a difference in the system. I feel fortunate to see my dad and uncle secure such good care for my aunt — and her own continued thriving against difficult odds. But the continued work, education, decisions, and trust involved are incredibly challenging. When care rests out of a family's choices and control, you have to count on all involved, far from the top, having an awareness.