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31.1.11

Misimagining People: Revisiting the Concept

I've written before about the concept of imagining and mis-imagining people - namely, making them fit into the narrative that we think they should fit into - but I'd like to touch on it briefly here again, in discussion of something that came up in talks with a friend tonight.

There are many of you who know me and know my story involving my family, but there are still quite a few of you who don't. For that purpose, I'd like to give you a little background.

This is my brother (in the green shirt):

It should be fairly obvious, but in case you can't tell - he's disabled. Specifically, he has, in technical terms, Trisomy 21, or Down Syndrome. Down's affects development physically and mentally - long story short: he's handicapped.

MJ (short for Matthew Joseph) is 28 years old, and plans to go to Disney World for his 30th birthday in 2 years. He has a part time job doing housekeeping at a hotel in Sioux Falls, and his own apartment that is incredibly messy. He goes to South Dakota Achieve - a post high school center for disabled people in Sioux Falls - in the afternoons, and in the evenings and on weekends, he is active in Special Olympics.

He's also a pretty normal human being. He gets angry - particularly at me - and he can understand when he's being insulted. He worries about things, especially when plans are going to deviate from his normal routine. He'll call my parents just to ask about how their cat is doing in the evening, and then call back again a few minutes later to make sure that Mom knows to pick him up in the morning. He makes incredibly lame jokes, and laughs at the funny things my Dad does. He's a pretty average man.

Growing up, people would ask me "What's it like to have a disabled sibling?" I never knew really how to respond to that question. Being the youngest of three, with MJ as the oldest, my other brother and I have never known anything different. MJ has always been there - it's almost like having a twin. I can't tell you about my experience with him because I don't know what it would be like to have two "normal" siblings.

But what I can tell you is what I've already said: He is a normal human being. He is capable, he understands, and he knows when he's done something wrong or right. He does not spend his entire life uncorrupted from the world in this little hazy bliss of ignorance. He even votes, though I myself had doubts about whether or not he was casting a vote just to please dad. But that may be a place where even I have underestimated him.

There's a pervasive tendency in society to expect total strangers to conform to our preconceived narratives of who people are - as wrong as they may be, we expect certain things when we see certain looks or behaviors, and part of the beauty of human experience is letting people surprise us.

But there seems to be one group that is consistently left out of that recognition and changing of the narrative is that of disabled people. There's a particularly insidious narrative that disabled people are "innocent," they are "angels," they are these "gifts from God who are able to speak clearly to a situation because they don't have a filter." They're our "little buddies," and "like the younger sister we never had." If there's one group we consistently fail to treat as human beings, it's the handicapped.

Even as the sister of a disabled person, it's been a long period of me making the conscious decision to change my attitudes to see MJ as a capable adult. I'm still a little afraid to let him wander about on his own in public, even though he walks to the bus stop and takes the bus by himself almost everyday.

And I have noticed that my coddling him, my refusing to see him as capable, has had a negative effect. When he is around those who see him as this innocent, incorruptible angel who needs help on every little step, he will ask for help on every little step. But left to his own devices, he knows how to do everything we thought him incapable of.

Our narratives about others are not just mental blocks to ourselves and personal hurdles we need to get over in relating to others, but they are narratives that can shape how others perceive themselves.

When MJ is told that he is a capable person and can do what he's trying to do just fine, then he will do it. If I come in and insist that I help him, or that he can't do it, he will internalize that message. It's remarkably clear to see in my own brother, and it's been a remarkable process to work on helping to undo some of that.

When we tell people that they are incapable because of the narratives we see them fitting into, we do them a major disservice of not allowing them to discover on their own whether or not they are capable.

This doesn't just apply to the disabled. This applies to every single person we meet. The narratives we choose to tell ourselves every day can have negative effects on those surrounding us.

When we mis-imagine a person, we also encourage them to mis-imagine themselves. And that is a great tragedy.

22.1.11

The one place where competition is good.

There are days when the goodness of people makes my eyes well with tears. There are days when I am reminded that the world doesn't truly suck as long as there are good people in it living their lives with goodness. I try, quite often, to be one of those good people, but I see myself constantly outstripped by others in terms of goodness and generosity.

And that's a good thing.

Being the sister of two older brothers, competition is in my blood. There are definitely points when competition is welcome and beneficial, and the race to "do good" is one of those things.

I'd like to share, if I can, a couple of those stories of communities coming together to support those suffering in their midst.

We'll start with something that happened today.

I've talked a lot on this blog about John Green, one of my favorite Young Adult authors, and one half of the vlogbrothers, a Youtube "sensation," as it were.

The other half is his younger brother, Hank Green, who lives in Missoula Montana, is a computer-y guy, and runs a website called "Ecogeek" (I believe).

We also know, from this video, that Hank is dealing with a chronic illness, and has to take daily medication to deal with it. We also know that, already, this medication can get pretty expensive. Up until today, one of Hank's medications cost him $50/month.

Until today.

This morning (well, for me, it was this morning), Hank tweeted: "I very nearly fainted just now at the pharmacy when they told me my script cost is going from $50 a month to $620."

And it got worse: "I am seriously depressed and scared and angry. There's a scheduled increase to $670 in April. That's $8000 a year."

Now, Hank is lucky enough that he has a large following of supporters and fans who were immediately sympathetic to his plight. But, as most of his fans are teenagers or poor English teachers like me, there's not a lot that we could do except on an extremely short term basis. We felt bad, but we honestly didn't know how to even begin to approach the problem. Thankfully, Hank is also a responsible adult, and was discussing alternatives with his doctor.

And then tonight (for me), Hank tweeted this: "Un-credited, mysterious tweet, to unnamed savior who is helping me in a huge way that I cannot discuss. Thank you thank thank you."

Now, as vague as that is, the only real assumption we can make from it is that someone, somewhere, is helping Hank out with his sudden $8,000/year expense, and that is a wonderful thing. That is something that, as the Green brothers would say, is truly made of awesome.

Another story is one that unfortunately involves one of the places that is a scar on the Christian faith in America: Westboro Baptist. This church, for those of you unaware, likes to blame every dead soldier on America's pro-gay policies (to which I go, "what policies?" but that's another matter). They carry signs saying "God Hates Fags" and the like and protest at the FUNERALS of dead soldiers. They're pretty despicable.

And they make their money to travel to all these different places by suing people who protest against them, who infringe on their rights. As a result, there have been a number of creative and awesome protests against WBC.

But none of them beats the human wall.

In Weston, MO, WBC showed up to protest and found that the corner their permit allowed them to protest on was already taken up by literally hundreds of people. The people from the town and from surrounding communities came out in full force, and formed a barrier to keep the WBC protesters from getting anywhere near the funeral, blocking the view with giant American flags and forming a literal human wall.

If that's not the goodness of community coming together, I don't know what is.

True goodness shows up in communities coming together, in helping out a person you've never actually met, in being willing to reach out to help just one person. And it's those ideas that when others see them, they are spurned on to further goodness.

Being good, being someone who loves others and takes care of their neighbor doesn't have to wait until you have that right job or that right living situation. It can start today. It can start now. We hear a lot of those heroes, those people who went running toward the gunshots, those who wrestle the gunman to the ground, but there are people who everyday help the mother in the grocery line behind them pay for their groceries, who give up having a warm dinner so they can help the person next to them, who take the bus instead of a car so they can afford to help others. There are good people all around, and we can use the stories of others doing good to push ourselves on to doing more.

What good are you going to do today?