No More Boxes, Please.

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.

You guys see the irony in my mom using a black and white picture for this particular post, right???

You guys see the irony in my mom using a black and white picture for this particular post, right???

6 Comments on “No More Boxes, Please.”

  1. Holly F. says:

    You’ve probably seen my response to Lisa already. Y’all both have me thinking.

    I like the way you give an example of generalization versus stereotype. The problem I see is that what one person may consider a generalization, another may consider a stereotype. While there is a concrete definition for both words, it is still open to interpretation to what category something may fit into. And it is very nuanced. I’m having some bad days lately and feeling less than faithful in the public, but I’m not sure many of them are capable of understanding the difference, even in the excellent example you gave. Many people have never taken stats, know very little of variables, and surely don’t understand the concepts behind predispositions, much less genetics. They see physical features and behavioral differences in their small sampling of one or two individuals with Down syndrome.

    I’m going to end up losing my advocacy card over the following information, but a while back, I debated in a comment section on an article about Ds. There were a number of people there that had relatives with Ds who were quite older. Their relatives did not have the benefit of therapy, adequate schooling, or parents that were educated enough to do anything but despise the hand they were dealt. The people commenting were basing their opinion of all individuals with Ds by their experience with their relative and let me tell you, their opinions were horrible!!! They felt like all individuals with Ds were worthless drains on society that would grow up to be miserable, spoiled adults who caused their parents extreme misery. That was the stereotype they were promoting. I tried to explain to them that their experience does not proof anything and that other experiences are just as valid, but they would not hear it. Some even suggested forced abortions at diagnosis. Anyhow, I started thinking that if there would be stereotypes, I prefer the good ones over the bad ones. At least the good ones don’t result in people thinking about forced abortions and/or euthanasia. Or having an opinion that absolutely no money be spent on education of individuals with Ds because they are worthless. Thinking they are angels on earth who are always happy is still marginalizing, but it does not scare me in the way the other stereotype does.

    I agree that marginalization is bad. I’m not sure we can really work to dispel stereotypes in any way other than just being honest in our day to day lives and blogs, which is honorable in itself. I think actively telling the public NOT to stereotype, whether good or bad ones but especially good ones, will just cause them to shut their ears.

    • jisun says:

      I hear you on the nuance, but I think that is where we as a community have to constantly question ourselves.

      My thing about good stereotypes is that they create bad ones. There’s no way to stay within a good stereotype, because it is an impossible thing to actually live. I say this as someone who was constantly stereotyped as a “good Asian girl”. There’s no room in there to be a fully human being, and one day, a person will behave in a way that doesn’t support the stereotype. At that point, there’s no benefit of the doubt, no nuance, and the pendulum swings all the way to the negative stereotypes. It’s a rigged game, in my eyes. The trick isn’t to try to “win” the game with a positive stereotype, but to walk away from the game.

      But like I said, this is why I think we have to talk about things. Even when it is hard, we have to stay respectful and keep talking. Not walk away, you know?

      • Holly F. says:

        You and I shouldn’t have two different conversations going at one time, it may become confusing.

        Regarding confirmation bias, the theory is that even when new information points to the bias/stereotype being wrong, people refuse to accept/assimilate the new information because it means they have to completely change their way of thinking. For example, when my family members who are sure Trent is an angel on earth with no capability of doing anything wrong/sinful/willfully misbehave/whatever see him do something opposite, they will make every excuse in the book to justify why he is not fitting their bias at the moment. He is tired, he is sick, I provoked him, etc. They refuse to change their mind that he is not an angel/perfect/incapable of misbehavior. You can see this with other stereotypes and even religious beliefs. Anything to the contrary of the strongly held belief is conveniently forgotten or excused.

        I think “fully human being” is perfectly stated Jisun and I don’t disagree that it is a huge problem. I’m just disagreeing with your statement that once the good stereotype falls away, the bad will replace it. I think it would take an extremely rational, thoughtful person to actually let go of their confirmation bias after seeing refuting evidence and even then, I think they would move more to the middle than swing to the other side.

        I also agree the game is rigged and we need to stop playing. I’m just not sure how. Again, I think being honest is a start but I’m not sure there are other ways. But I’ve also said it before, it takes all kinds of information and advocacy to make our kids’ lives better. While some flavors of blogs (I can think of one in particular) that promote rainbow unicorn fairy dust constantly seem dishonest and pointless to me, I think logically there is a niche for it and it still does good in the way of bringing people into the Ds community when they have no personal connection to Ds. You have to first get in the community before you can dwelve into the murkier areas. And there is still a long shot from murkier areas to some of the “hardcore” advocasim I’ve seen practiced on other blogs.

        • jisun says:

          I definitely think there is a place for all levels of “depth”. I know people dislike Kelle Hampton and there are times I wish she were more outspoken, but then again, there’s nothing wrong with having a blog with beautiful images of your daughter with T21. I do think one way is to examine our paradigm. I know what is a wonky word, but I dunno what else to use. I find so many of us (me included) slipping into trying to refute the bad stuff with the same thinking that created it. Like when I see very ableist responses trying to counter the idea that people with disability won’t “amount to anything”. The impulse is to cherry pick a Karen Gaffney, and point to her and all her accomplishments. She’s wonderful, but how many of the general population gets a doctorate? People shouldn’t need that to prove their worth. What makes more sense to me to question why we think that academic excellence is so important and strive to create different metrics for human skills and talent.

          I’ve seen a lot of research on the damaging effects of positive stereotypes, I will try to come back to this topic and link some of the papers.

          I’ve really been contemplating perception and belief. I wish there were more research on the social psychology behind the way we see Down syndrome, disability in general. Maybe it exists and I just haven’t found it?

  2. I’ve met some real assholes with Down syndrome. No joke. I actually took a job where I could be around people with disabilities all day so that I could hang out with them. And guess what I found out?!? That some of them don’t want to hug everyone. Not all of them want to be your friend. Some of them are rude and nasty and treat their girlfriend’s like any other neurotypical jerk I have ever met. It was truly eye opening. Most of the adults with Ds I have encountered were just lovely people, but some of them? Assholes. The fact that I take this as a positive might strike some people as weird, but I totally do. It means they run the gamut just like the rest of us.

    The other thing is that I don’t think any of us owe the world a rosy picture of our families. If you can’t look at me and my husband, who are still happy together after 20 years, or look at our family and see that life is good, then I can’t help you and frankly, you don’t deserve my time.

    Peace out, J! Great post. :)

    • jisun says:

      I love this, Amy.

      There’s a group of adults who must live somewhere near our grocery store, I see them out together often, the hubby has been around them quite a bit just by chance. There is one very friendly dude, the rest are, well… um, abrasive. BUT, abrasive in very unique ways! ;)

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