Harriet McBryde Johnson, a few years ago, before she died. |
Though I think that ultimately the answer to this question is yes, I find it almost impossible to reflect properly on the matter, especially in writing. We can't even ask the question properly, because we're so immersed in a world view in which vulnerability is bad.
The model of humanity that sees persons as individual atoms, as free agents wheeling and dealing with one another, ultimately looking to serve our own good, whatever that may be -- this model is so pervasive I feel like it's gone beyond serving as a "model" to understand people and is now attaining the status of common sense. It's just the go-to metaphor.
And in that model of personhood, I feel like the answer to the question about vulnerability has to be an obvious and resounding No. Of course it's worse to be more vulnerable. Because almost by definition in the model, to be vulnerable is to lose. You lose the opportunity to control a situation; you lose the ability to confer a benefit or pose a threat; you thus lose in the real sense your ability to get what you need.
These facts ground, I believe, part of the explanation for why people with disabilities are marginalized in our society in such a particular way. This isn't something I can say I have clear conclusions about, but the idea is that because incorporating people with disabilities into regular public life requires a conceptualization of humanity that can conflict with the model, it puts certain members of the general public into some kind of fight or flight mode.
Like: if you're going to spend resources constructing wheelchair ramps, making things visible and auditory, and so on, this raises questions about why we do those things for some people and not other things for other people. There are good answers to these questions, some of which have to do with fairness and justice and some of which have to do with other virtues. But those answers -- they don't fit very well with the model. Let's just say -- they put pressure on it.
I was thinking about some of these things a few weeks ago when I taught, in my Intro to Philosophy class, this excellent piece in the New York Times magazine, in which Harriet McBryde Johnson -- a lawyer and disability rights activist who was, herself, disabled -- described a debate she had with the utilitarian Peter Singer, over whether disabled infants that no one wants to adopt can morally be helped to die (or maybe simply killed) if their parents wish it.
Singer, a utilitarian who counts up costs and benefits, says Yes: the benefits outweigh the costs in such cases. Johnson, naturally, says No: it's unfair and discriminatory to adopt such a policy with respect to disabled infants when we clearly would not do so with other conditions that affect wantedness.
If you're at all interested in these questions you should read the essay -- she brings up a lot of interesting things. One of the things they both touch on in their discussion is the question of whether certain disabled people -- like McBryde Johnson herself-- are "worse off" than typical non-disabled people.
One of the things Johnson says about this is "Are we 'worse off? Not in any meaningful sense."
As I interpret her, I think Johnson means two things with this. First, of course it's true that some people can't walk or run, but those aren't activities in any way essential to human happiness. And second, of course it's true that some people need assistance with things -- she needs help eating and exercising her limbs and so on -- but this assistance is often not medical as much as just a bit more of the ordinary things people do for one another all the time.
Lots of people need assistance. It's not just children and old people and the sick and disabled. Think about all the moments of vulnerability in your life, where sadness or the events of your life made it seem impossible to put it all back together, or the prospect of doing what you felt you had to do just felt like too much. Really, the state of needing assistance is more like the norm than the exception.
Expanding on her thought about not being "worse off," Johnson writes,
"There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs."
I think she's absolutely right, and I think that one of those things they have that the world needs is a challenge to the individualistic model of humanity that forces us to see vulnerability as a bad thing.
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