[This post is a departure from my usual topics related to war, but since thinking about injured soldiers (as I do) means thinking about moral categories of embodied personhood, I hope the connection will be clear.]
I want to begin by applauding the New York Times and Danny Hakim for devoting considerable energies to their Abused and Used series exposing the deadly peril within NY state’s system of care for people with developmental disabilities. It’s not exactly a hot topic for an exposè.
But I was angry that in their contribution to the series this weekend, Hakim and co-author Russ Beuttner fed into ideas about people with disabilities that are part of the same deadly system their work has the potential to undermine.
Their focus on broken rules and poor regulation presents people with developmental disabilities as troublesome things to be managed and “dealt with.” Even their retelling of the story of James Taylor’s death conveys his life through burdens felt by others. Despite the candor and care of his mother and sister, visible in this accompanying video, Mr. Taylor’s life is primarily depicted as dead weight.
To be fair, the coverage reflects a double bind: these lives are not valued, so the series focuses on death and abuse in order to get attention. But in focusing on death and abuse, the series suggests it is deaths rather than lives that are worth attention, intervention, and resources.
So why do we care more about how some people die than how they live? As Mr. Taylor’s sister puts it: “these sorts of people are not valued in society”. This is true, but unsatisfying. We need also to ask what makes some people, but not others, people of “these sorts”.
The Used and Abused series confirms a common sense answer: These people are sorted by the biological facts of impairment; the neck that doesn’t support the head any better than a newborn, the brain that is ‘developmentally equivalent’ to a three-month-old’s. Those are facts of Mr. Taylor’s impairment due to cerebral palsy as described by Hakim and Buettner.
But this common sense is nonsense. Mr. Taylor was a 41-year-old man, not a baby. Comparing him to an infant is an (evocative, ubiquitous, offensive) analogy, not a statement of biological fact. And the strength of his neck does not explain why he was made to live in conditions that killed him.
I did fieldwork with injured U.S. soldiers rehabilitating at Walter Reed Army Medical Center. As the NYT, Washington Post, and others have reported, soldiers often sustain brain injuries with major cognitive consequences. But we don’t evaluate injured soldiers the same way as Mr. Taylor—even when their brains are injured or literally missing.
Yet there may be no quantifiable difference between how someone with cerebral palsy can think and how a brain injured soldier can think. Nonetheless, we actively support the life of an injured soldier but merely try to prevent the death of people like Mr. Taylor.
The difference between these two “sorts of people” (or kinds of people, as Ian Hacking might put it) is one we make. It is rooted in morally weighted social facts, not biological ones. It is about the lives we value as a society and those we do not to. This is a basic human inequity for which we bear collective responsibility. Luckily, it is one all of us can work to change.