A commenter on Paul Austin's response yesterday said that it was clear I had misinterpreted the frustration expressed by some parents.
I don't believe I did.
I did feel the same discomfort when I first read Paul's piece. As the parent of a child with intellectual disabillity, I have a strong radar for depictions that suggest a person like my son is less than human. When I felt those pangs of discomfort – the first being where Paul pinches Madison to try to get her attention and likens her eyes to those of an animal caught in a trap – I wanted this story to be tied up neatly at the end with an epiphany. I wanted this doctor to come to a place where he clearly sees that as humans we are all fragile, and we are equal in our fragility. I wanted him to understand that expressing pain isn't an indicator of being less than human. If anything, it is what makes us human. It is what makes us capable of empathy.
However, the more I read the piece, the more I read irony and bravado into Paul's thoughts. He's trying desperately hard to build a case for why his daughter is better off than Madison, mentally cataloguing each comparison. Yet the more he insists his daughter is both different from Madison and invulnerable, the less convinced he seems. That line from Shakespeare's Hamlet came to mind: "The lady doth protest too much, methinks."
And then I thought about how stereotypes are transmitted through a culture, so that no person (except perhaps a baby or young child) is immune.
I thought about how I'm part of a culture where stigma against people with disabilities is deeply rooted – in all adults – not just people outside the disability community.
I thought about the French study last year that showed that stereotypes exist at the unconscious level – so that one can be surprised at thoughts or feelings one has that don’t line up with one's stated views. "Where did that come from?"
In the study linked to above, researchers found positive explicit evaluations of children with Down syndrome can co-exist with negative associations at an unconscious level, revealing hidden stereotypes.
In other words, people who say and believe they are accepting of children with disabilities – even, according to the study, caregivers who work with people with intellectual disabilities – can carry the same dark stereotypes you would expect in the ignorant, but in an automatic way they're not necessarily aware of.
I thought about how these stereotypes are within all of us. It's not a matter of parents who are "enlightened" vs. those who aren't, or parents vs. the outside community. These stereotypes are socialized into our collective consciousness. That's why we can so easily trot out the negative attributes commonly associated with people with intellectual disability. It's no secret because we were raised with these ideas.
What is disturbing is that people who don't acknowledge their own connection to these stereotypes may not even be aware that they operate at an unconscious level. When I asked the lead researcher of the study above if we can be trapped in automatic stereotypes handed down to us by our predecessors, she said: "As long as we don't know about them, yes."
Only, she said, if we have self-awareness, can we "choose to change stereotypes, to struggle" to free ourselves from them.
I can recall times during my son's life when I've had thoughts that are fed by our culture's discriminatory values against disability, and against particular types of disability.
I remember when my son was diagnosed at three days that I took comfort in the fact that his rare genetic condition wouldn’t immediately mark him with the features associated with Down syndrome.
Before his intellectual disability was diagnosed, I went to great pains to tell people that “mentally he’s fine” – knowing that in our culture, people with limited intellect are not valued as much as those with high IQs.
I feared what life would be like if my son was indeed intellectually disabled. My conception of what that meant – based on my ignorance – didn’t match up with my beloved, charming, curious little boy.
When I received his diagnosis at age 11, I wept inconsolably, knowing the stigma my son would face.
I thought about times in which, like Paul, I've compared my son with other children, with my son coming out on top. But I now see this as a last-ditch coping mechanism and not a position of strength.
It’s similar to when I hear about a horrendous incident on the radio. I might say to myself: "Well, at least I’m not dealing with that." Is that a charitable thought to have? No. But during a stressful period it may give me perspective.
I know that at vulnerable times when I have found myself tied up in mental knots about my son's disabilities – one in which I might fall prey to trying to convince myself that my son is better off than another child – that this does not reflect my sense of superiority but the exact and utter OPPOSITE.
It reflects my deepest insecurity, vulnerability and anguish. I've been reduced to trying to prove to myself that my son is valuable – something that in a saner moment I would know to be immutable.
I know how tempting it can be when writing to censor out thoughts or feelings, to present the "next-generation" Louise – the one who doesn't carry any of our cultural baggage about disability. Why not just wipe the slate clean?
But when I see the dialogue sparked by Paul's piece and the follow-up posts, I believe it's a good thing. I don't believe we're better off pretending that as parents we've never had stereotypical thoughts flit through our heads, even gain some traction. If anything, I think we need to talk and talk and talk about this. And not just amongst people in the disability community. But broadly. We don't change stereotypes by mandating what people think or feel, and castigating those who don't measure up.
(Of course, we can legislate and enforce how people act!)
It makes me think about how I used to be on the alert to catch anyone not using people-first language – convinced it meant they were demeaning people with disabilities (whether they had even heard of the people-first concept or not).
And then over time I realized that someone could use people-first language and still be incredibly patronizing. On the other hand, someone could "put their foot in it" with language but be genuine.
Recently, adults with disabilities are speaking up to say that they should be able to choose how they'd like to be referred to: "I'm not a person with a disability, I am a disabled person" writes one young woman. And a colleague of mine who has a disability asks: "Why do people without disabilities decide what I'm called?"
Pediatric rehab researchers have begun using the term "disabled children" to refer to children who are disabled by their environment and public attitudes.
But without open discussion, we might not recognize this new meaning. "They just don't get it," we might sigh, shaking our heads.
I'm for bringing things out into the light of day. We all need to hold the mirror up and take a close look at our attitudes.
And I say that knowing how disappointing it is that we're not somehow above our culture, its values and stereotypes – but rather, a product of them.
If you're as old as I am, then you know that the headline is a line from Michael Jackson's Man in the Mirror.