Monday, 6 October 2014

The Worth of Vulnerability

Marilynne Robinson is a great American novelist and essayist who mines contemporary society for meaning.  Her themes are expansive and biblical in their proportions.  This what she said in a New York Times Magazine interview recently:



“People,” Robinson said, pausing before she defined that familiar word in original terms: “Brilliant creatures, who at a very high rate, predictably, are incomprehensible to each other. If what people want is to be formally recognised in society, to have status, to have loving relationships, houseplants that don’t die, the failure rate is phenomenal. . . . Excellent people, well-meaning people, their lives do not yield what they hoped. You know? This doesn’t diminish, at all, the fact that their dignity is intact. But their grief . . .”

I've been thinking a lot about grief lately, especially the grief of being inadequate to meet the needs of our loved ones.  When I can't soothe Nick's pain or when I hear my Mom (who lives in a different city) tell me over the phone that she hasn't eaten breakfast because her caregiver never arrived.  And I've been thinking about if and how my son and my mother are formally recognized in society - are they at all?  Robinson's mind seems to have wandered in the same direction as mine.  Here's what she said about human worth: 

The idea is that there is an intrinsic worth in a human being. Abuse or neglect of a human being is not the destruction of worth but certainly the denial of it. Worth. We’re always trying to anchor meaning in experience. But without the concept of worth, there’s no concept of meaning. I cannot make a dollar worth a dollar; I have to trust that it is worth a dollar. I can’t make a human being worthy of my respect; I have to assume that he is worthy of my respect. Which I think is so much of the importance of the Genesis narrative. We are given each other in trust. I think people are much too wonderful to be alive briefly and gone. 

We are given each other in trust - that is something I feel, absolutely.  I've given a lot of thought to the notion of human worth, especially that of people who require care.  What about someone like Nicholas who will never be employable and will always need total care?  I love him, but how can I publicly defend his worth?

Many parents will identify with me when I talk about Nicholas’ contribution to the quality of my life, especially to my spiritual wellbeing. I am a better person for loving him and caring for him. But certainly I cannot say that because I have cared for my son, and consequently increased capacities for selflessness in myself by virtue of attending to his needs, that either of us would wish to claim that as his contribution to life in general.  As the special needs Dad and theologian David A. Pailin said,  “Those who are looking for a reason to justify caring have not understood that love is a self-justifying and all-sufficient ground for certain types of behaviour. Those who remain puzzled by love (and even cynical about references to it) should therefore consider whether the contributory worth notion of value has blinded them to what is good in itself.”  

Some activists in the disability movement defend the worth of those with cognitive disabilities by pointing to the “contribution of being.” But that stance is rooted in what positive effects might be experienced by an able-bodied person while spending time with someone who seems unresponsive. “I love spending time with my aunt who has advanced Alzheimer’s disease because we just sit together. I have a busy job and she helps to slow me down” is one story I heard to back up this theory.   But, what if this aunt had no visitors who enjoyed sitting with her? Does this woman’s worth diminish the longer she lives without her capacity for reason? What if all her relatives were killed in an accident and there was no one left who remembered this elderly woman before the onset of her disease? In the case of the severest forms of disability, it may be too difficult to imagine an individual ever having capacity. How do we rate the worth of such souls? The theological anthropologist Hans Reinders expands on the idea of received love as the scorecard for worthiness. “The gift that profoundly disabled human beings have received is the gift of being, which is derived from the freedom of judgement. No entrance tickets are needed, no exams have to be passed. ...The gift of being is not an abstraction; it is the gift of being what you are.”

When I was researching my book and casting around for a theory of human worth that would include my son, I had a conversation with the distinguished professor and academic, Melanie Walker.  I told Melanie that the best theory I'd found so far was a religious one, but I worried that it wouldn't be inclusive for anyone who didn't believe.  "Well, you'll have to find a theory that's not religious", she said, shrugging.  "Try reading Eva Kittay."

Eva Kittay is a philosopher, but she's also a disability Mom.  Kittay's daughter Sesha has a severe cognitive impairment.  Kittay has a wonderful theory of human worth that includes her own daughter, Nicholas and my Mom.  "We are all some mother's child", she maintains. "Our dignity, I want to argue now, is bound both by our capacity to care for one another and in our being cared for by someone who herself is worthy of care."  This idea is perfectly personified by the mother and newborn baby.  This relationship of dignified, perfect care and pure love, is at the root of equality in human dignity and civil society itself.

Recently on Facebook, I saw that Eva Kittay had started an innovative project to persuade young academics from varied gender, economic and racial backgrounds into graduate work in philosophy. Her  inclusive project is called PIKSI.  With women and even people with disabilities entering graduate careers in philosophy, perhaps we'll have more inclusive theories of human worth that resonate with me and other families like mine. 


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