Thursday, January 10, 2013

Take a look at yourself, and then make the change

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.


In terms of illustrating the point regarding stereotypes/disability, I think your post here does a far better job than Paul's did of doing that. In fact, if his piece was really about that, it missed it's mark with me by about a mile.

I agree with you 100%, Louise. I saw that irony and bravado in Austin's writing too, that's why I called it 'male' in comment yesterday. And being the mother of a very macho young man with severe disabilities, I melt a bit when I see that reaction to stress...because it's so transparent. I think he wrote very, very honestly about complicated feelings of anger and guilt mixed with stress and exhaustion. There is a very powerful passage in Helen Featherstone's "A Difference in the Family" when the author suddenly sees her son as others would - in a flash, there it is. Severe disability laid bare. It's a terrible moment and one that I can relate to. My reaction is to rush to my boy to protect him these thoughts that anyone might have. And what readers of Austin must remember is that his daughter is 16! An awful age for anyone, especially fathers of girls to question the legitimacy of their daughter's clothes, sexuality, weight, sports ability, intellect and yes, disability. Let's all just take a deep breath and a good long look in the mirror. Thanks for your wisdom, as always, Louise.

I see this writers points totally as well as Donna's comment above. It appears to me that many new parents go through that first reaction of fear and then come to the epiphany of the first stage of acceptance and the thrill of new knowledge about differences. That is where I find the most judgement towards others. I do think that there continues a progression of plateaus's of viewing your child- at least for me- where I see them mostly through my love and daily acceptance lens and then something happens to pierce that and plug in to underlying fears and anxieties... that is what I see happening to Paul. Also, I work in the medical field and know that we self observe via a professional prism at work and that sometimes is more clinical than compassionate- I saw that as well.... If people heard honestly what the range of thoughts pros have as they interact with others it would probably shock folks not in that arena. Yet the humans that are best in those fields allow those thoughts- assess those thoughts and move through it into providing compassionate treatment.

"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."


I agree with much of what Louise says, as well as Starrlife's comments---I don't work in medicine but have many friends who do, who have told me exactly what she describes. I think most of us are hardwired to favor signifiers of health and other normative measures in our society, just as babies are said to be more drawn toward very symmetrical faces. This is all part of a long, complicated, ongoing discussion, one that obviously has
enormous ramifications for the well-being of disabled people, however one defines that, and their families. It's not surprising that things get fractious. @Meriah: Moxie is one of my favorite words and attributes.

Exceptional piece of writing, Louise. Completely on mark. But I do believe that there is a deeper psychology at work, that of self preservation. If we can retreat into our own world, where the boundaries are ones we determine, we feel safer. We do this by separating, by making comparisons and coming out on top. The alternative of more transparency is simply too difficult for many to deal with. On the other hand there is most definitely a level of consciousness to this issue as well and as such it will develop at a different rate and to different extent with each of us.

Bravo. As they say in the American south, "You done good."

Thank you all for your comments!!!

Donna -- I read a Difference in the Family many years ago. It is a hard book to read, I recall, because it is so honest in terms of expressing the emotions of parents.

Starrlife -- Welcome! I think you're right on in saying that we come to this place of accepting differences but we can also be pushed back to underlying stereotypes during stressful/fearful times.

And it is useful to know about the kind of prejudices profesionals may have and how the medical culture itself promotes this -- e.g. we just did a story about the grief cancer doctors experience when their patients die -- but they're not allowed to express it because they're supposed to be emotionless. And they take death as a professional failure because they are trained to "cure."

A -- good point about the studies showing babies drawn to symmetrical faces.

And Meriah and Eric -- I think that we are all at different stages in the process of recognizing and acknowledging those cultural stereotypes we carry. And Eric, like you say, there is a protective element in it when we compare, which may help people to cope.

Thanks again!