Monday, July 18, 2011

What I Saw

The four of them were first in line. Young teens all, maybe at the most 15. There were three girls, one boy. Four kids. Three friends. One not. They all gossiped excitedly about the movie. They knew, most of them, everything there was to know about Harry Potter, the books and the films. This was the last movie and they were excited to see how it all plays out, be part of the phenomenon. Two of the girls and the boy formed a tight circle. The other girl stood slightly back and a little to the side.

Sidelined.

She stood, feeling every moment of the exclusion, as if time weighed heavily on her shoulders. One could almost feel her longing for the darkness of the theatre. A darkness that she could hide in. The others who 'othered' her were oblivious to the pain on her face. Most in the line weren't. Everyone could see the discrimination. No one said anything. There was nothing to say. Nothing that wouldn't have made this situation worse. Nothing that would have made it any better.

She had dark hair and a shy smile. Some of what was said, the gossip about Daniel Radcliffe's nude pictures on the Internet, the disbelief that Dumbledore was gay, was amusing. She included herself by listening and reacting. They excluded her not in overt acts of violence but in covert acts of annihilation. She just didn't exist to them. Oh, no, that's not true. When she was glanced at, only glanced mind, it was the same look that teens give a room that needs to be cleaned or homework that needs to be done - a resigned boredom.

At home her parents are probably thrilled that their daughter, their different daughter, is out with friends. They are probably praying, hard, that it's going well, that's she's having fun. I'll bet she will lie to them when she gets home. I'll bet she will protect them from her life. Children protect parents as much, if not more, than parents protect children. I've seen it. I've done it. A simple little lie that says, 'I'm OK, don't worry.'

At school her teachers probably say of the three 'normals' that they are such good kids, that they include in their friendship a fellow teen with a disability. On Monday, at an in-service or conference somewhere in the world, a wonderful story will be told about a young woman with a disability who goes out to movies with her friends. Audiences will take notes, some will wipe a tear from their eye, others will write, in big, bold letters INCLUSION WORKS.

Many people think I'm anti-inclusion. I'm not. I'm anti lying. I believe that we prefer the myth to the truth and because we choose to accept the illusion - we no longer seek solutions, or challenge ourselves to think more deeply about the world as it is. I believe that 'inclusion' as a movement has failed. This does not believe that I think that 'inclusion' as a goal isn't worthy. I only wish that we'd all be a little more honest about attempts that fail so that we can devise new attempts, new strategies. Good heavens, it's as horrific to live a life of forced segregation, as it is to live a life of forced isolation.

I believe that there are things that we can do that will foster community and companionship. I believe that it is possible to vision a world wherein people with intellectual and physical disabilities find a proper place of value. But I don't believe that we can get there while we are still lying to ourselves about what we've done. While we still listen to happy stories of inclusion and stand and applaud illusion. While we leave a young woman standing alone, on the outside looking in. While we have a young woman go home and talk of a friendship that doesn't exist to parents who so desperately want to believe the lie that they can't hear the truth - false words from a broken heart are unmistakable.

I want one day to be sitting in a conference taking notes and writing INCLUSION WORKS, because its actually true, not because someone gets paid to tell a good story, others get paid to document illusion and other others stand in line ups and wish, with all their might, that they weren't alone.

27 comments:

Kristin said...

As a supposed normal kid, I was never a popular kid and I know how much that exclusion hurt me. I can only imagine how much worse it is when you are faced with it from so many.

I hope that young lady finds some true inclusion.

bookgirlwa said...

I was that girl with a disability, for so long, and in some ways part of me always still will be. Thank you for writing this for her.

coffeetalk said...

AMEN, once again. We can't change what we don't acknowledge. We will keep trying, though.

Liz said...

Dave, I usually find myself nodding in strong agreement to your posts, or at least thinking "I never looked at it that way, thanks for the insight," but I am reacting differently to this one: I saw myself in the included/excluded kid. I once went out to a meal with 'friends,' who switched tables (leaving my stuff at the first table and choosing one with fewer seats) when I got up to go to the bathroom.

But here's the thing: I am not disabled, I was of the same race and socio-economic group as those 'friends.' In fact, I could not have been more similar to them in all objective ways. They were excluding me because of /who/ I was and who they were, not because of /what/ I was and what they were.

I currently teach the 7th & 8th grade groups at my church, and have come to the conclusion that everybody -- and I do mean EVERYBODY -- experiences that kind of exclusion at some time. Some people experience it almost all the time.

You may be right, that inclusion doesn't yet work -- but maybe this is just an instance of kids excluding because they can, not because the person excluded is disabled. And maybe on some other evening, with some other group (or even with this same group), she would be and feel included.

Just a thought -- and a thank-you for making me think about these things.

ivanova said...

This is a very interesting post. I really feel for the girl who was excluded. This topic makes me think about Malcolm X, who is remembered as being "violent" even though he only gave speeches. The real big difference between him and Dr. Martin Luther King Jr was that MLK wanted integration and Malcolm X did not. He basically said, why should I work so hard to be with people who have treated me like garbage and don't want to be with me either.

Personally, I don't feel ready to throw in the towel on inclusion because I don't think it has actually been tried yet, not really, at least not in the U.S. I think many schools do it very poorly and half-heartedly, but that doesn't mean it can't be done well.

Lauren said...

At my Jr. High school in Idaho there were a few children with disabilities (I think Downs syndrome) who were taught in separate classes for some subjects, but "integrated" into classes like PE or music. We knew they were different and some of the kids made fun of them. Some of us (like me) didn't know how to act, but all we saw was the mean kids pointing out their mistakes. I really wish someone had taught us how to behave. I wish the teachers would have explained their disability instead of pretending it wasn't there and taught us acceptance for doing things a different way.

CL said...

Liz, my first reaction was also to think about the times I've felt the pain of being on the outside of the conversation circle.

But even though many non-disabled people can relate to being excluded, I think it's important to talk about inclusion and disability because disabled people are more likely to be excluded in so many ways, and because the reasons may be different from the reasons that some non-disabled kids are the victims of exclusion.

The fact that many non-disabled people get excluded doesn't mean that disabled people are wrong that their disabilities are a factor -- I suppose it's possible that these kids weren't excluding the girl "because" of her disability, but often the disability is the reason, and it's important to talk about that.

Almost every injustice experienced by non-privileged people has also been experienced by many privileged people (unfair treatment, bullying, poverty, and so on) but it's still important to talk about the structures and prejudices that cause some groups to be disadvantaged because of who they are.

Anonymous said...

For inclusion to "work" (I question the notion, since we're all here on Earth and can't feasibly leave for any appreciable amount of time, so we're all "included"), people's right *not* to include others, or *not* to be included themselves, has to be respected just as much as their right to include or be included. I absolutely don't feel that there should be any coercion, or that people should be forced in any way. True connections that are characterized by mutual respect can't be scripted or forced.

Nan said...

You saw good. Way too loaded and heavy and deep and dark and meaningful a post for me to be able to think and respond in a comment! But yes, you are right on. There are many ways to be included, many ways to be excluded, and many reasons for both as well. Would that we could all SEE and note and adapt. P.s., I don't think many parents are that blind and many struggle with how to deal with exclusionary experiences of inclusion. I don't know . . . sometimes its all just in search of that one friend or circle that may not make up for all the exclusion, but sure as hell makes life fun! My daughter has been blessed through her life with different circles/friends like that. And cursed with token inclusion as well. We talk about it, move on, hope that the damage doesn't result in therapy that is too expensive . Sometimes life sucks. But if you have someone you can say that to and who will agree with you and who will hold you when you need holding and laugh with you when you need to laugh, then hey! you just might have great poetry!

Spaz Girl said...

bookgirlwa, I was that girl too and honestly, now, in college, I still am to an extent. I know how much exclusion hurts - in some ways not acknowledging your existence is harder than being outright bullied.

Dave, you are brilliant and I posted this on my tumblr (flutterflyinvasion.tumblr.com).

Tony said...

Well this is interesting.

Liz: I guess I don't feel like it's just a matter of degree. For instance, at one point easily 80% of the people I interacted with would literally refuse to speak to me (and I had no way to know who was the 20% so I mainly just gave up for a long time). I don't think most people experience ANYTHING like that.

Ivanova: That's an interesting way to put it.

"why should I work so hard to be with people who have treated me like garbage and don't want to be with me either."

I honestly feel like this but... disabled people are isolated. We don't have our own communities, not in the brick and mortar sense, whereas Black separatism is a viable idea.

So what do I do personally? I spend quite a lot of time alone. And the time that isn't spent alone, I spend in the few spaces I've found that actually DO want me to be there, at least more than they don't. Many disabled people never get experience spaces like that.

I'd rather not be as alone anymore, honestly, but so many other things are coming together now so I will continue this way.

Andrea S. said...

Am currently out of country and, therefore, not logging in as regularly as usual. But,

1. Ditto to everything CJ said to Liz. Yes, everyone is excluded sometimes--but as Liz herself says, there are a few kids to whom it may happen much more often. And to this, I would add that a disproportionate percentage of these are kids being excluded on the basis of their disability. And this ought to be talked about more so it can be addressed more effectively.

I sometimes refer to the kind of "inclusion" David refers to as "warm body inclusion" -- meaning, a person with a disability is physically in the room which allows people to point to them and say, "Look! We're including them!" ... but without the actual substance of inclusion happening. Years ago, as a young deaf women for example, I was once in a room full of deaf adults who all did know how to sign at least at a basic level, but all were refusing to use any of the sign language they knew because they wanted that night to be a "night off" when they could have fun and not have to think about communication access issues. But they still expected me to stay and "participate" in the activities that I could not understand or follow because I couldn't understand what anyone was saying the whole evening. In other words, the only person being forced to think about communication access issues was me: they wanted fun for everyone EXCEPT for me, because I wasn't actually included in a meaningful way. I was just a warm body in the room who they wanted to stay, as far as I could tell, mostly so they could pretend to themselves that they were being "inclusive" when they weren't.

Kristine said...

I think the difference between fake, surface-level "inclusion" of the disabled, and typical teenage exclusion, is the thick layer of pink frosting being thrown on top. I teach middle school, and when a group of kids are acting like teenagers and excluding somebody, it's usually very apparent. Depending on the kids and the situation, it's viewed as teasing, or bullying, or being "mean girls," or just simply "not friends." Some of it's more intentional and cruel than others, but all hurtful.

But in situations like what Dave watched, MOST people wouldn't see anything wrong. The other kids got to pat themselves on the back for being nice to a girl with a disability. They likely have lots of people patting them on the back for being nice to the disabled. They get to feel all warm and fuzzy about what kind, compassionate, inclusive people they are. And there's a good chance that the girl with a disability feels like she is supposed to feel grateful to these kids for being her friend. While it's yet another example of a power play, and the more-privileged using the less-privileged to increase their own privilege, most viewers treat it as a rainbows and sunshine moment.

(Obviously I'm imposing my own interpretations onto an incident that I didn't see, and people I don't know. Consider this to be commentary on similar situations I have been involved with, more than assumptions about these particular kids. :)

Liz said...

Kristine- Thank you. That was a brilliant description of what makes this situation different from run-of-the-mill-teen-meanness. These teens may even have thought they were being nice.

Thank you, thank you, thank you for putting that into words so well.

Andrea S. said...

Thank you, Kristine -- you said it better than I did

Dave Hingsburger said...

I was very nervous about posting this blog, I thought that people who attack me for speaking openly and honestly about what I saw. What happened instead was a really thoughtful discussion and commentary. I am privileged to have you all as readers and commentors.

moplans said...

Thanks for sharing this Dave.I would love to hear more about how you think real inclusion could work.
It bothers me a little the attitude towards the 'normals'.
You would not have been able to identify them as excluding the girl had they not invited her or had her pushed on them- perhaps she was a sister, cousin, neighbour?
no, it isn't real friendship. should she be left home? why assume the parents are at home hoping she has friends?
why assume what the teacher's think? why assume anything?
would love to hear more.

Andrea S. said...

Moplan

I don't think Dave's point is that she should have been left home. His point is that we need to be careful not to mistake "fake inclusion" (where the disabled person is really just there as a warm body and not actually participating in a meaningful way) for the real thing. If we recognize that "fake inclusion" is going on, then we can move on from there to identify possible solutions. Perhaps the people around the girl don't understand her disability and need more awareness. Perhaps they aren't sure how to include her in a meaningful way and are too hesitant to ask: perhaps they need guidance. Or whatever the potential solution is.

I think Dave has raised these issues and questions, not because he has any special insight on what is happening with this specific girl and the specific group of non-disabled companions who were with her, but because the general situation of "fake inclusion" DOES happen quite frequently among people with disabilities, perhaps particularly with children (because children have less control over their environments and adults may have more options for leaving a situation they don't like). I know I have experienced it many times myself to varying degrees, and you can see from the comments here that others have also shared this experience.

You're right we don't really know what the specific parents of this particular girl were thinking or hoping, or what the teachers were thinking in this particular situation. But the GENERAL issue of "fake inclusion" is common enough and problematic enough that it absolutely needs to be discussed. Because "fake inclusion" isn't good enough, we need to go beyond this to real inclusion and belonging.

Instead of focusing on the specifics of this particular group of young people, I encourage you to consider the broader issues of what makes inclusion "real inclusion" versus "fake" inclusion and what we can do to ensure that inclusion happens in a genuinely meaningful way. What would these mean for you? What do you feel it should mean for a child or other loved one in your life? How do we achieve this?

Thanks for reading.

Dave Hingsburger said...

moplan, As Andrea said in her excellent comment, I'm taking a specific incident and drawing out general concerns. You are right, I don't know the exact specifics of this case but it is also NOT an assumption to talk about exclusion as it relates to those with disabilities. In this blog I try to take something I saw, or did, or experienced and turn it into something that can generate meaningful dialogue. Do I wish she was left home? I don't know. The real question, does she wish that she'd been left at home? Which is worse? Only she can answer that. Maybe she loved the movie and what she experienced was the cost she paid ... But I worry that someone pays pain, that kind of coinage needs to be eliminated.

Dave

Ana said...

"At home her parents are probably thrilled that their daughter, their different daughter, is out with friends. They are probably praying, hard, that it's going well, that's she's having fun. I'll bet she will lie to them when she gets home. I'll bet she will protect them from her life. Children protect parents as much, if not more, than parents protect children. I've seen it. I've done it. A simple little lie that says, 'I'm OK, don't worry.'"

i loved this paragraph. its something so often ignored, yet, as an autistic teenager, its one of the biggest pressures of my life. every sleepover, every movie i see with friends, every trip to the beach, is yet another chance to reassure my parents. i can see it in their faces, hear it in their voices, the hope that i'll grow up to have a "normal life." when i announced that i had a boyfriend, they acted like he's a huge shiny trophy i've won, engraved with "normal teen". my parents constant and obvious desire for me to have a big popular social life has often made me end up in uncomfortable social situations, standing outside the circle, alone in a crowd of people, rather then spend yet another night at home dealing with their pitying worrying glances at me as i sit in my room with my computer.

moplans said...

Thanks Dave & Andrea
As I said in my comment, I am very interested in the concept of real inclusion, how it might work and what it might look like.

Andrea - your questions in the last paragraph are questions I have grappled with for my child. A theoretical framework may not be applicable to my life, my child or anyone's. We share an ideology, my questions are of a practical nature.

How do you include someone in a conversation that is moving too quickly for them to participate? Is it fair to vilify individuals for talking at their own pace? Is it expected/required for everyone to slow to the speed of the slowest member of the group?

I agree that 'fake inclusion' is a problem and I think we all will work to improve this, I also appreciate you starting this conversation Dave. I still feel for those 'normal' teens though. Why should they be vilified?

Dave Hingsburger said...

moplans, I guess we are destined to disagree. First, I don't think the teens in the story were 'vilified' ... holding someone accountable for their behaviour isn't vilifying them. I don't know why people with disabilities always have to be forgiving or understanding of those who purposely hurt or exclude them. They were teenagers, they knew what they were doing, the could have chosen different and didn't. Ruby, at 4, knows that's mean. Why don't they? Why don't you?

Cynthia F. said...

Ana, thank you for your insight into the pressure you feel to reassure your parents you are doing "normal" things. Really powerful to hear.

Cynthia F. said...

And Dave, so sorry I've been AWOL as a commenter and reader the past few months - just had a new baby and have been cocooning with her. Now if I could just figure out how to get her to be *exactly* like Ruby when she grows up... :-)

moplans said...

Dave,

I didn't say it wasn't mean. It's a little mean of you to suggest I don't understand something that a four year old does.

I don't think we disagree at all. I completely agree with your post and comments.

The comments here attest to the fact that all of us feel excluded at some time.

As I noted in my last comment, I share your goal of real inclusion. Why aren't we having a conversation about that rather than my sympathy for the teens in your story?
I work with adolescents, they are learning, as are we all. Why criticise kids who are doing something when they may be amongst your greatest allies in working towards real inclusion.
My questions are sincere. Why are the normal teens held to account for exclusion while the girl is simply a victim with no agency to act on her own behalf and get involved in the conversation?
If what you think we have to agree to disagree about is the necessity of asking questions like this - getting beyond the rhetoric of power and privilege and talking about what is realistic and possible, then yeah, I guess we do have to agree to disagree.

moplans said...

PS while we are on semantics -you weren't holding them accountable, you were describing something you saw.

Andrea S. said...

Moplan

Describing something you saw isn't the same as saying "and they're mean for doing this"

Even describing their behavior as mean is still not the same as vilification. I think that's a bit of stretch.

If you are concerned about how to make real inclusion happen, then why jump in to defend the non-disabled teens in the first place, especially when they didn't really particularly need defending? If you want to talk about inclusion, then keep the focus on the perceptions and experiences of the disabled teen ... who, yes, may have perceived the behavior of the other teens as "mean" even if the other teens might actually be great, lovely people who had a thoughtless moment.

I think Dave and I may get frustrated for similar reasons -- too often when people with disabilities TRY to start an honest discussion about the experiences of people with disabilities and how to minimize the more negative aspects, non-disabled people often come along and wrench the discussion away from this important dialogue to put the focus back on people without disabilities. And this tends to derail the discussion so that concerns relevant to our lives often fail to be adequately explored.