Being A Person
As a person who has never been institutionalized, I don't really get it. And as a person who has (though not in 'institutions', or at least I think not) been a caregiver, I agonize over this. How do I avoid being the 'bad kind' of staff?
A recent journal article I found gives me a hint. Titled "Did you find that out in time?", it's a qualitative study of five families who either refused prenatal diagnosis knowing that a disability was likely, or had prenatal diagnosis confirming a disability and did not abort. The families are varied - one woman had a child with an extra marker chromosome (which turned out to have no clinical effect, but they couldn't have known that before birth), one family had a baby diagnosed with spinal muscular atrophy while the younger child was still unborn, one family had a child with cystic fibrosis and refused testing for another child who turned out to have CF as well, one family had a child with Down Syndrome, and one couple had both parents affected by hereditary skeletal dysplasias (causing short stature). It's an interesting read, and if you have access to it I recommend reading the article.
Anyway, one theme several parents mentioned was negative reactions from others. This one, by the father of the DS child, really shocked me (Tessa is the mother):
"I got zero support from my family and they made it very clear that they didn't really want Emma to be part of their lives and focused a lot more on [our other two children], with presents. To the point that one day [small laugh] ... my mother turned up with two scarves, which she'd knitted, one for Felicity and one for Tegan. And Tessa said, 'It's just outrageous'. She said, 'What about Emma?' 'Oh, she'll never notice'. And she did! [small laugh] She was crying. See she just wants to be like her sisters."
She'll never notice? From my experience with Down Syndrome children, they may be behind other children, but they make it quite clear that they notice and understand a great deal about human relationships. Very little is said, in this article, about Emma's functioning level, but from my knowledge of DS I'm assuming she's verbal, and able to express quite a bit through words. Which raises the question - how could her grandmother even think she wouldn't notice that she was excluded? (She'd likely have been wrong even if Emma was much more severely disabled, but it would have been a more reasonable mistake, since if someone genuinely wasn't capable of noticing such blatant exclusion, they would probably be very severely impaired.) If she stopped to think, even for a moment, about what the world likely looked like through Emma's eyes, she'd have known that Emma would notice and feel the exclusion.
Which implies that she didn't. That it didn't occur to her to put herself in the position of a child with Down Syndrome. That she hadn't thought of Emma as someone with a perspective - as a person.
Which brings me to something else by Amanda Baggs. Her Youtube video, Being An Unperson. In that video, she does describe some blatant abuse that can result from being seen as an unperson. But you get the sense that this abuse is only a side effect of the real problem - the denial of personhood. As an author, I tend to think of it as a person being seen as 'not having a perspective', in other words that the story couldn't possibly be told from their eyes. (Even if this kind of person is the protagonist, they are generally depicted in a kind of third person that seems written from a different viewpoint than their own.) When she compared this kind of treatment to how you'd treat a child, at first that didn't make sense to me as I don't treat children this way. (And you shouldn't - one thing developmental psychology has taught me is that kids have a lot on their minds.) But others do, and I think that's what she's trying to get at.
Even if this attitude doesn't result in blatant abuses, it shows through in their behavior. In whether they chat easily with a person who can't reply back, assuming there is someone on the other side listening. In how they smile at the person. In the amount of effort made to understand the person's attempts at communicating (even if they aren't successful, since after all no caregiver is perfect), and the effort made to offer and honor choices made by the person. I make a point to imagine every child I work with as an adult, thinking back upon their encounters with me, and ask myself whether they'd see me fondly or negatively. (Just like how I think back on my teachers and remember some fondly and others with pain and hurt.) Everyone, no matter how young or how disabled, has their own story, and even if they lack the skills to tell it, that doesn't mean it's not there. I don't want to be a villain in those tales.