Life as an Extreme Sport

St. Margaret’s [August 08]

I know that everyone is hoping, if not expecting, a journal reaction on St. Margaret’s, and I understand why: the facility has quite a few profoundly disabled individuals there, and I think it’s a difficult thing to see regardless of how prepared you are. The staff themselves often had wet eyes during the tour, or at least our guide, the physical therapist, did. Nurse Otto also gave us a list of questions to ponder while we were there, and I guess I found those easier to think about. It’s not that I really felt neutral at the home, it’s just that I didn’t feel much different than I would in any other intensive care hospital setting.

In a way, this disappoints and bothers me. I had talked earlier about Wayne’s comments about acclimatization and distancing ourselves from what we see, and my bit of fear that doing so means a loss of humanity. I had intended to walk into St. Margaret’s with my heart on my sleeve, feeling everything and still being grounded, connected, and so forth. Instead, like I said, I found it like any other wander through an intensive care unit. Has that acclimatization and distance already happened? Some time over the last few years, did I build a wall and not notice it, and I’m just now seeing the bricks and mortar? I’m not an unfeeling person, so I really don’t know what it is. On the one hand, I feel like this is good, because I don’t feel any different, or like I needed to be different while there. But on the other, I find myself suddenly wondering if I lost a part of myself without noticing.

Potentiality seems to be at the heart of the St. Margaret’s issue. As we were told when we were there, most of the patients have no more than a 9 month old capacity, if that — and that would by far be their best patients. Yet we grant a 9- month old infant full moral agency, so why would we not do the same for these children and young adults? We assume that a well cared for infant is cheerful, happy, and has a good quality of life. Why would someone in a facility like we saw at St. Margaret’s have any less a good quality of life than that infant? The only conclusion I can reach is a dual one.

1) We know that, at one point, this person had a different quality of life, age appropriate and shifting with their age as they grew up. Because of our knowledge of their previous baseline, we see where they are now and assume they must be miserable, stuck. Aware that they are unable to progress, and that they will be forever as they are, static entities until death.

2) We differentiate this injured person from an infant because we realize that an infant has the potential to grow, change, age, and have an age appropriate quality of life. We don’t consider a 35-year old living at a 9-month infant’s capacity having an age appropriate quality of life.

Of course, the problem that comes up with this is that we still grant moral agency to someone with Down’s Syndrome, who typically has limited capacity and quality of life appropriate to age. …or, then, perhaps we have to look at whether or not we grant people with limited mental capacity full moral agency?

Interesting. I think I’d like to continue this conversation with someone I can actually use as a sounding board. Any takers?