No More Boxes, Please.Posted: August 20, 2013
Stereotypes, abortion, and the Down syndrome community. I’ve had many, many, maaaaany debates on these topics during the past few weeks. In fact, it seems like all I ever talk about lately.
Then I read this post. Basically, if I’m reading Meriah’s post right, she believes the fear of sending the wrong message to the rest of the world (or being told she’s sending the wrong message) has been preventing her from speaking openly and frankly about all the aspects of raising a child with Down syndrome. Those truths may fit into some stereotypes out there about Down syndrome, and what is wrong with that? Some stereotypes may be true, after all. Heck, some stereotypes can be helpful. (I disagree, but I think this is what she is saying.)
I see some conflicting needs and desires here. On the one hand, any community should, and needs, to be able to discuss commonalities and shared experiences. Difference should neither be denigrated or elevated, nor hidden away. On the other hand, any oppressed minority is constantly fighting back a privileged majority’s stereotyping and marginalizing and so there is a real desire to counter any negativity out there, or maybe even hide it away. Throughout it all, the Down syndrome community is painfully aware that many are watching, analyzing, and judging, as they choose between carrying their fetus with Down syndrome and terminating.
It is a hot mess, I tell you.
First off: I don’t think a single one of us owes the world a tailored, censored account of our life for fear that a family will terminate a pregnancy. In fact, I think that would be a huge disservice. If I sit in front of a prospective parent and insist that life is roses and butterflies, she is a) likely to not believe a single thing I say or b) going to be feel smacked in the face when something difficult happens. Something difficult will happen. Not because she has a child with Down syndrome, but because she has a child, period. Add on statistical odds that her child might have a medical condition and is of a marginalized minority in the world, well, it seems pretty unwise to cherry pick our realities. Now that that issue is out of the way…
Somewhere in there, we are losing the distinction between stereotype and general difference.
I speak in generalizations sometimes because it is useful; it is a rational attempt to discuss similarities within a certain group. Stereotypes, however, I avoid like the dickens because they are untrue and unhelpful.
We have, by our connection to Down syndrome, a common experience that can be generalized, but must not be stereotyped. Part of getting a diagnosis helps us navigate this common experience, after all. Indeed, statistics are generalizations; they allow inference to be drawn from a group of people but tell us nothing about an individual. There can be truth in generalizations. Stereotypes, by definition, cannot be truth. A stereotype is a limiting, one dimensional caricature that masquerades as truth.
Stereotype: People with Down syndrome are unhealthy.
Generalization: Having Down syndrome can predispose an individual to certain medical conditions.
There is the appearance of that kernel of truth, but if we look at it, there’s no actual truth in there.
What about positive stereotypes? No dice, for me. The issue with stereotypes isn’t that they’re negative, but that stereotyping creates “the other”. Stereotypes, negative and positive, put an entire group of people over there. Subhuman or superhuman, they aren’t us. Good or bad, we analyze them. Then, if someone happens to not fit into a stereotype (this is inevitable, as no one can fully fit into a one-dimensional caricature), then that individual becomes an outlier. Not a fully human, complex being, but simply an exception. You see, it isn’t the positive or the negative, it is the process of stereotyping with which I take issue.
I can’t get behind anything that puts my kid in a box. Even if it is a beautiful, shiny, happy box, I don’t want him in it, period. I don’t want him out in the world with people assuming he is incompetent, nor do I want him feeling compelled to live up to an expectation that he must wow people with a magnetic personality, extra special happiness, or the like. What if he is having a terrible day? What if he just doesn’t have a magnetic personality? Will that make him the Down syndrome defect? He’s going to have battles to fight already, why add any extra layers?
With this in mind, I want to keep talking, with an open heart.
I absolutely think that we should talk about common experience. But asking, “Hey, my kid is doing this, is your kid?” is not the same as saying that a child is “growing into” a stereotype. Unless we are thinking that a child can become a one dimensional idea, which I don’t think anyone wants.
Maybe there’s a reluctance to talk about differences that are perceived negatively because, well, they’re perceived negatively. That’s not a reason to shy away, that is a reason to lean in. I’m not content to just stop at “kids with Down syndrome often go through a bolting phase”. I want to know how other parents see their children’s unique personalities, intellectual disability, and societal influences play into the behavior. I want to know how other parents outside the T21 community see this behavior. That way, if the time comes when I go through this as a parent, I’ve got the benefit of others’ wisdom behind me, not a stereotype.
I don’t think we should leave the positive stuff alone, either. I’m not content to stop at Brian Skotko’s research saying that individuals with Down syndrome have higher rates of self-reported happiness (emphasis important, as I want to stress that this is different than saying a group of people embodies happiness). I want to know how parenting, family values, support, and cultural views factor into this phenomenon. I want to know how people assess their own happiness, in general. Then, when my child grows older, I have a well of wisdom from which to draw, not just some vague idea that he’ll probably be happy.
This idea of wisdom is very important to me. It was the light of truth in those confused days after our diagnosis. It is the light of truth as I try to navigate my way through parenthood. It isn’t a prescribed path lined with stereotypes, however. It is the dialogue, the connection, the interplay of fresh eyes and veteran experience that creates this collective wisdom. It is the same wisdom, I believe, that can be a light to those facing a prenatal diagnosis, so that they can make a truly informed decision for their futures.
We’ve got to talk about the hard times, because they are real. The world has already done its share of damage by trying to convince us that struggle, hardship and difference are to be avoided at all costs. In the club, we know these ideas to be false (of course, ours is not the only club to figure this out, let’s not be self-centered here). Our lives are beautiful, normal, hard, and worthwhile all at the same time. That is life.
Let’s just be careful. In the end, stereotypes of all kinds are damaging. Let’s talk, question, challenge, so our kids can be free from boxes, period.
I want my child to scream, whisper, rant, rave, laugh, cry, smile, hug, avoid, run, cling, and just be.