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On the Question of Humanity

As advocates, we sometimes have to stop and ask ourselves a question. Who is it that we are trying to reach?

On the surface, the answer feels very much like the formula for political strategy. You’ve got your solid believers and your solid detractors, and you end up fighting for the undecideds. We reach out as best we can to the general population, knowing that there are those who already believe in our cause, and those who will never support it.

But for disability advocacy, it’s not quite that simple.

Do we reach out to those who seem like natural allies to our loved ones, but whose approach feels distasteful somehow? These are the purveyors of inspiration candy, the ones who believe that the disabled among us are inspirational, or heroic, or angels with a purpose: to empower the rest of us. Through their day-to-day struggles, they show us how to be better people, and they convince us to get out of bed and go to work with a joyful heart, because if that special little trouper can do it, than lazy old able-bodied me shouldn’t complain at all. It feels like it helps, but it absolutely doesn’t. There’s a dash of pity lurking there sometimes, in the midst of this kind of disability fetishizing. I can’t imagine people with disabilities are interested in inspiring you. When we celebrate them as heroes, we miss the point. We separate them from the rest of us mere mortals, but perhaps separation is the thing they wish for the least.

This is a tricky group to advocate to, because they’re mostly on the side of right. It’s worth reaching out to them, because their hearts are good, and a good heart is a solid foundation for real change. Their position isn’t one that most of us are unfamiliar with, either. I don’t like to present Schuyler as an inspiration, although I’m sure I have in the past, but I do think of her very much as a motivator, so perhaps I’m still a little guilty of this myself. I try to do better, however, because letting go of the Heroic Little Broken Girl narrative is a huge step towards embracing her intrinsic humanity.

On the other end of the spectrum, there are the haters. You don’t have to look far to find them. Here’s just one example, from the magic that is the anonymous internet. These comments were left on a story about a professional baseball player giving a jersey to a fan with terminal cancer in a wheelchair:

“TIME TO ACT RETARDED AT DODGERS GAMES.”
“This is nice and all, but how bout giving it to someone who can actually appreciate it? That cripple looks like someone just handed him my dirty old gym gear. Get excited, you vegetable!”

Do we try to reach this person? My honest opinion? Probably not. I mean, you can try. There’s also that dividing wall in your living room that you’ve been wanting to knock down, and you could try using your forehead to do it. I suspect you’d get the same results with both tasks. Probable failure, or success but with a monster headache and a lot of blood on the floor.

The thing is, not everyone who is left is undecided. Not every dehumanizing party sounds hateful. The most dangerous among them sound downright reasonable. They are the ones who stand most defiantly in the way. They are the ones who go to city council or school board meetings and with voices both calm and reasoned make the policies that weigh down our loved ones like chains, or make them invisible altogether. They are the ones who make services and education for the disabled sound like entitlements, or luxuries that we might be able to afford next year, perhaps. They are the ones who reject individual social responsibility in favor of community Darwinism, and make basic human rights sound like a choice that we can easily reject and still sleep soundly when we get home.

Meet Scott Belkner. If you can look beyond the inspiration candy of how this video is presented, Scott himself has one clear message. Scott isn’t a hero. Scott can do whatever Scott needs to do. It might take him longer, and he might have to try harder to accomplish it. But Scott isn’t looking for pity, and he’s not trying to inspire you. He’s letting you know that if you’ll simply give him a chance or at the very least stay out of his way, he’s going to live his life on his own terms. You can deal with that however you please.

For one commenter, dealing with that means offering up the choice I mentioned earlier, the false one that suggests it takes more to qualify as human than self-actualization.

“I’m sorry if this comes across as negative, but how much does it cost to give an extremely handy capped individual an iPad with voice capable technology? And with that same amount of money, how many homeless and productive individuals can you help. Even if only one of the many sponsored homeless are actually productive, isn’t that still more than one handy capable? I find it difficult to give thousands of dollars to person that will never be able to support themselves no matter the circumstance, over a small child with cancer. I am proud that he lives his life to a successful state. But the next woman we save from breast cancer might be our next president.”

Productivity. Giving back to society in a measurable way, something that can fit on a timecard, or a resume. It’s not enough to have value as a human being, to live and love and think and write and communicate your thoughts to others, no matter how great or how petty those thoughts might be. Human value is a thing that can be measured, by the units you manufacture or the items you sell or the slick deals you make or the swell gadgets you own. For those whose contributions are less easily predicted or quantified, the very basics of education or accommodation or even basic communication are suddenly up for grabs.

If you think this is an oversimplification, there’s something else I’d like to share with you. A few years ago, I wrote a couple of pieces for an extremely conservative website. Preaching to the choir gets old, and sometimes you need to venture into the lion’s den. The response was about what I expected, and those essays are no longer on the site. Perhaps that’s for the best, I don’t know.

But at least one other conservative site picked up the ball and ran with it, in response to a piece I wrote concerning the societal responsibility for providing special education in public schools. Of all the things for which I have advocated over the years, I wouldn’t have expected this to be a controversial subject. I personally believe in public schools, deeply. I think that if we give up on public education, we’re basically giving up on civilization. Just throw open the gates and invite the Visigoths in. And believing in public education means believing in educating all of our citizens, equally (although not identically, a point that seems to escape a lot of people). I don’t think that’s a particularly radical Socialist belief.

Judging from the comments, however, you might imagine that I’d advocated for a sedan chair and four strong men to carry it for every special needs child in America:

“Regarding your daughter, I doubt very seriously that there are “people out there that don’t want her around them” as you say. I bet they just don’t want your child’s special needs slowing down the progress of their own children.

“I’m sure your kid is great. I have a nephew with Aspergers. Once you get accustomed to him, he’s great, and a friggin’ genius to boot. We probably both agree that special kids can be wonderful.

“But when you suggest that making sure that the child gets the special care he/she needs is the responsibility of the school, you lose me as a fan. That’s YOUR job. Special kids need different forms of education. To put them in the ‘mainstream’ as you call it would be to force all of the other students to learn less as your child’s special needs are addressed. Leave the school out of it. It’s up to YOU.”

—–

“You’re simply not being honest if you don’t think putting a child who needs extra help won’t slow down the amount of information being passed to the children who don’t need extra help.”

—–

“The ‘no child left behind’ environment is a lot like hiking. You can only go as fast as your slowest comrade. Not only do the gifted and talented suffer but so does the big middle. Funds go to special ed, and maybe the TAG, but then the rest of the kids get stuck in classes with 38-42 kids, the teachers are overwhelmed and nobody gets and education. When masses of kids drop out the schools breathe a huge sigh of relief because that leaves so many fewer kids taking those standardized tests and fewer kids that need to meet minimum requirements.

“Beware the parents of special ed kids, they are very vocal.”

—–

“Most people have compassion, but we aren’t and can’t be responsible for all people all the time. This business that society needs to pay for all the education for all the children regardless of time, money and effort is absurd. If you have a special needs kid whose needs aren’t being met by the programs offered for free by the public school system then pull your kid out and find another way. Quit trying to dip into my pocket and trying to convince me that your kid is my burden.”

—–

“We have shifted drastically from accommodating children in wheelchairs who could otherwise learn to accommodating children who have a pulse. We send children to specialists for swallow tests. Yes, that is a test to see if the child can swallow. We would ask but the children are not able to respond through voice or head motion or even blinking.

“When we spend all education dollars on children with no education goals whatsoever, we have to deny the children with mild disabilities the services needed so that they may attain a standard education. We also deny the rest of the students needed supplies, curriculum, textbooks, etc…

“I am not unkind. I want a balance. We have slipped too far to the side of entitlement without end. We need to have some balance and that must start by curtailing services without end for children with profound disabilities and no hope of education.”


The thing is, these sound like reasonable arguments. Why should your child’s education suffer so that my kid can succeed? Why should valuable resources go to a child for whom we can’t easily envision a productive future in a working society? Why should we try so hard when the end result is so hard to see?

These sound like valid arguments. And I guess they can be, as long as you can do one thing, with clear eyes and an unwavering heart.

You have to be able to deny another person’s basic humanity, based on nothing more than your own expectations and your own ideas of what that humanity looks like. If you believe that we don’t have intrinsic value as human beings, and that we have to somehow earn the right to be a person, then these arguments probably make sense. You can make them, and you can go to your PTA meeting and argue that special education funds are a waste of resources when compared to what might be accomplished by supporting programs for kids who are going to go to ivy league colleges and become doctors or attorneys or work on Wall Street. If you can make that choice in your head, in a way that doesn’t make your heart sick, then those arguments may sound reasonable to you.

If that’s you, I honestly don’t know how to advocate to you.

I wouldn’t direct you to the Bible, because despite your ideas about what it means to be human, I suspect you already know your gospel better than I do. But I might invite you to talk to the Quakers. The Religious Society of Friends, as they are formally known, believe in a direct relationship with God and a universal priesthood made up of all believers. The Quakers see God as an intrinsic quality, present in all of us, rather than an external force. The light of God shines from within, they believe. We understand God by finding that light in others. To find it within the disabled, whose lives seem the most remote from our own, and to relate to those people instead of marginalizing them or running, that’s a path to seeing God.

That’s what the Quakers believe, anyway. Personally, I’m an agnostic, so I’m open to the idea.

If Western religion isn’t your thing, I might suggest you visit some of what we might arrogantly refer to as primitive societies such as the horse tribes of Mongolia, or any number of African tribal communities. In many of these cultures, children with differences are identified when they are very young. This form of early intervention doesn’t identify kids as autistic, or bipolar, or epileptic, or nonverbal. They see these children as belonging to a different spirit plane. They’re not pitied or held up as special angels or heroic little troupers. They are apprenticed to the culture’s shamans, and their differences are cultivated as a bridge to a spirit world that is valued by their society. These children have value, as much as any other. Their humanity is seen as augmented, in a way that is honored and respected and never questioned for a moment.

Primitive, you might be thinking. Well, you’re probably right. These aren’t cultures that value material acquisition. They don’t know how to use an iPhone and they’ve never followed the stock market. They don’t understand that their society should value productivity and conformity.

They’re barbarians. We have nothing to learn from them. Right?

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