Seeing through a parent's eyes

 

I'm speaking to a group of student engineers next week about our journey trying to find a robust means of communication for Ben. These students work with families to develop technology that gives children who can't speak or move access to communication and control of a computer.

As I was putting the presentation together, it struck me that there were two distinct ways of "seeing" Ben. One was through medical descriptions that focus on deficits, and the other was through a parent's eyes -- mine.

I think every parent of a child with disability wishes the world could see their child through their eyes. Especially when a child can't speak, the parent's knowledge of that child's inner life is so critical.

This passage from Cognitive Disability and its Challenge to Moral Philosophy captures this beautifully:

Philosopher Eva Kittay quotes writer Evelyn Keller talking about Nobel-winning scientist Barbara McClintock.

Inevitably, "seeing" entails a form of subjectivity, an act of imagination, a way of looking that is necessarily in part determined by some private perspective. In ordinary life, these private perspectives seldom emerge as discrepancies; the level of shared vision required of people to cooperate is usually met. But science and art alike make tougher demands on intersubjectivity...; both are crucially dependent on internal visions, committed to conveying what the everyday eye cannot see."

Keller, Kittay writes, "goes on to argue that McClintock's 'feeling for the organism,' the close personal attentiveness that McClintock devoted to the entities that she studied, allowed a personal internal vision to see what the 'everyday eye,' which in some cases are the eyes of other scientists as well as lay people, could not perceive.

"One can say the same of someone who is in close contact with a dependent person, especially a person who is limited in his or her communicative skills. The close attentive eye needed to care for the dependent individual gives rise to perceptual capabilities that are not shared by those who have at best a glancing acquaintance."

I hope that in my talk to the students I can emphasize how critical it is for them to take the time to see the child they are working with through their parents' eyes. For without that lens, they will have a very limited and murky view.