RIP

Harriet McBryde Johnson died last week.

I had never heard of her until her 2003 NYT article on Peter Singer, which made me want to stand up and cheer. Sometime in the preceding year or so, in a short article I cannot find now in the NYT archives, the magazine had written uncritically about the practice of killing disabled babies in the Netherlands -- taking a syringe filled with poison and injecting newborns with painful congenital conditions. I sat at my kitchen table and wept, reading it. Two weeks later I wept again when I read the letters page, because not one published response -- not one -- suggested that there was anything immoral about this practice. 

I thought about writing in myself but I could not even think where to start: "News flash! There is a profound difference between alleviating suffering and poisoning a baby with the intent to kill." What kind of world do we live in where that distinction even needs to be made? I was delighted to read Johnson's account of her visit to Princeton -- it is smart, brave, ambivalent, unforgettable. It seems cliched to call her brave, but I cannot leave it out so cliched I will be.

Johnson provided a breath of fresh air in the Terry Schiavo case. The political posturing and media maelstrom made me want to hide under the bed until it was over, but I love her piece from Slate. "Florida law would not allow a husband to kill a nondisabled wife by starvation and dehydration; killing is not ordinarily considered a private family concern or a matter of choice," she wrote. Damn straight.

More than her writing on end-of-life issues, it is her views on day-to-day life with a disability that will stay with me. I have spent a sizable chunk of my professional life in long-term care facilities, trying to help people who, like Johnson, have brains and muscles that don't communicate effectively. She wrote in another 2003 NYT essay on the stripping away of small freedoms that many of her friends had faced, of the small things, like long hair and a gold bracelet, that marked her as an outsider when she visited them.

The essay made me think about my own choices in my work with with chronically disabled people. In long-term care, at least 75% of an SLP's workload is assessment and management of swallowing disorders. Can a resident keep liquids out of his airway? Can she chew well enough for adequate intake? If not, we recommend thickened liquids or pureed foods or both. Many SLPs approach these decisions conservatively, since aspiration pneumonia can be rapidly fatal. If you suspect aspiration and don't recommend thickened liquids, you could get sued in a hurry. (Oh, yeah, and also your patient could die a painful death. Much as I hate the tendency to emphasize the potential lawsuit over the human cost, it's easy to think that way.)

I will always remember Johnson's choice to decline a feeding tube, even when she weighed 70 pounds. By the time I read her essays I had moved away from the hyper-caution of my first year of practice, preferring to outline options and risks for families and encourage joint decision-making. Johnson's voice, though, is a potent reminder of the ways that we strip away patients' autonomy "for their own good." I'm not going to practice like that ever again. You want to bring your husband some homemade chicken soup? Sounds delicious. Let's talk about how we can keep it out of his airway, so you don't feel like you have to give it to him on the sly. 

I don't know how much clinical work my future holds, since I am in training to be a professor and not a clinician. But I hope I can share Johnson's wisdom with my future students: When you work with people who have disabilities, you can help to make their world a little narrower or a little broader. Go for broad.