Saturday, June 5, 2010

Disability Matters Nothing to Human Spirit

Aimee Mullins was born with fibular hemimelia (missing fibula bones) and, as a result, had both of her legs amputated below the knee when she was a year old.
33 years later, today, she is an athlete, actress, and fashion model best known for her collegiate-level athletic accomplishment.
People around the world love her not out of sympathy, but because of the hope that she breathes in to anyone who think they have a bleak future.

Just hear what she has to say about her 12 pairs of legs.

I was speaking to a group of about 300 kids, ages six to eight, at a children's museum, and I brought with me a bag full of legs, similar to the kinds of things you see up here, and had them laid out on a table, for the kids.  And, from my experience, you know, kids are naturally curious about what they don't know, or don't understand,  or what is foreign to them. They only learn to be frightened of those differences  when an adult influences them to behave that way, and maybe censors that natural curiosity,  or you know, reins in the question-asking  in the hopes of them being polite little kids.  So, I just pictured a first grade teacher out in the lobby  with these unruly kids, saying, "Now, whatever you do,  don't stare at her legs."

But, of course, that's the point. That's why I was there, I wanted to invite them to look and explore. So I made a deal with the adults that the kids could come in, without any adults, for two minutes, on their own. The doors open, the kids descend on this table of legs, and they are poking and prodding, and they're wiggling toes, and they're trying to put their full weight on the sprinting leg to see what happens with that. And I said, "Kids, really quickly -- I woke up this morning, I decided I wanted to be able to jump over a house -- nothing too big, two or three stories -- but, if you could think of any animal, any superhero, any cartoon character, anything you can dream up right now, what kind of legs would you build me?"

And immediately a voice shouted, "Kangaroo!" "No, no, no! Should be a frog!" "No. It should be Go Go Gadget!" "No, no, no! It should be The Incredibles." And other things that I don't -- aren't familiar with. And then, one eight-year-old said, "Hey, why wouldn't you want to fly too?" And the whole room, including me, was like, "Yeah." (Laughter) And just like that, I went from being a woman that these kids would have been trained to see as "disabled" to somebody that had potential that their bodies didn't have yet. Somebody that might even be super-abled. Interesting.
Yes, she thought of being disabled as being super-abled.

And interestingly, from an identity standpoint,  what does it mean to have a disability? I mean, people -- Pamela Anderson has more prosthetic in her body than I do. Nobody calls her disabled.
 Today, I have over a dozen pair of prosthetic legs that various people have made for me, and with them I have different negotiations of the terrain under my feet.  And I can change my height -- I have a variable of five different heights.
She was confident about herself. And she believed
Confidence is the sexiest thing a woman can have. It's much sexier than any body part.
May be that is why she appeared in 5 movies, and was featured in 3 books.

Now here is the transcript of her TED talk Aimee Mullins: The opportunity of adversity 

I'd like to share with you a discovery that I made a few months ago while writing an article for Italian Wired. I always keep my thesaurus handy whenever I'm writing anything, but I'd already finished editing the piece, and I realized that I had never once in my life looked up the word "disabled" to see what I'd find.

Let me read you the entry. "Disabled," adjective: "crippled, helpless, useless, wrecked, stalled, maimed, wounded, mangled, lame, mutilated, rundown, worn-out, weakened, impotent, castrated, paralyzed, handicapped, senile, decrepit, laid-up, done-up, done-for, done-in cracked-up, counted-out; see also hurt, useless and weak. Antonyms, healthy, strong, capable." I was reading this list out loud to a friend and at first was laughing, it was so ludicrous, but I just I'd just gotten past mangled, and my voice broke, and I had to stop and collect myself from the emotional shock and impact that the assault from these words unleashed.

You know, of course this is my raggedy old thesaurus. I'm thinking this must be an ancient print date, right. But, in fact, the print date was the early 1980's, when I would have been starting primary school and forming an understanding of myself outside the family unit and as related to the other kids and the world around me. And, needless to say, thank God I wasn't using a thesaurus back then. I mean, from this entry, it would seem that I was born into a world that perceived someone like me to have nothing positive whatsoever going for them, when, in fact, today I'm celebrated for the opportunities and adventures my life has procured.

So, I immediately went to look up the 2009 online edition, expecting to find a revision worth noting. Here's the updated version of this entry. Unfortunately, it's not much better. I find the last two words under "Near Antonyms" particularly unsettling, "whole" and "wholesome."

So, it's not just about the words. It's what we believe about people when we name them with these words. It's about the values behind the words, and how we construct those values. Our language affects our thinking and how we view the world and how we view other people. In fact, many ancient societies, including the Greeks and the Romans, believed that to utter a curse verbally was so powerful, because to say the thing out loud brought it into existence. So, what reality do we want to call into existence, a person who is limited, or a person who's empowered? By casually doing something as simple as naming a person, a child, we might be putting lids and casting shadows on their power. Wouldn't we want to open doors for them instead?

One such person, who opened doors for me, was my childhood doctor at the A.I. Dupont Institute in Wilmington, Delaware. His name is Dr. Pizzutillo. Italian American, whose name, apparently, was too difficult for most Americans to pronounce, so he went by Dr. P. And Dr. P always wore really colorful bow ties and had the very perfect disposition to work with children.

I loved almost everything about my time spent at this hospital, with the exception of my physical therapy sessions. I had to do what seemed like innumerable repetitions of exercises with these thick, elastic bands -- different colors -- you know, to help build up my leg muscles. And I hated these bands more than anything. I hated them, had names for them. I hated them. And, you know, I was already bargaining, as a five year-old child, with Dr. P to try to get out of doing these exercises, unsuccessfully, of course. And, one day, he came in to my session -- exhaustive and unforgiving, these sessions -- and he said to me, "Wow. Aimee, you are such a strong, powerful little girl, I think you're going to break one of those bands. When you do break it, I'm going to give you a hundred bucks."

Now, of course, this was a simple ploy on Dr. P's part to get me to do the exercises I didn't want to do before the prospect of being the richest five year-old in the second floor ward, but what he effectively did for me was reshape an awful daily occurrence into a new and promising experience for me. And I have to wonder today, to what extent his vision, and his declaration of me as a strong and powerful little girl, shaped my own view of myself as an inherently strong, powerful and athletic person well into the future.

This is an example of how adults in positions of power can ignite the power of a child. But, in the previous instances of those thesaurus entries, our language isn't allowing us to evolve into the reality that we would all want, the possibility of an individual to see themselves as capable. Our language hasn't caught up with the changes in our society, many of which have been brought about by technology. Certainly, from a medical standpoint, my legs, laser surgery for vision impairment, titanium knee and hip replacements for aging bodies that are allowing people to more fully engage with their abilities, and move beyond the limits that nature has imposed on them, not to mention social networking platforms, allow people to self-identify, to claim their own descriptions of themselves, so they can go align with global groups of their own choosing. So, perhaps technology is revealing more clearly to us now what has always been a truth, that everyone has something rare and powerful to offer our society, and that the human ability to adapt is our greatest asset.

The human ability to adapt, it's an interesting thing, because people have continually wanted to talk to me about overcoming adversity, and I'm going to make an admission. This phrase never sat right with me, and I always felt uneasy trying to answer people's questions about it, and I think I'm starting to figure out why. Implicit in this phrase of overcoming adversity, is the idea that success, or happiness, is about emerging on the other side of a challenging experience unscathed or unmarked by the experience, as if my successes in life have come about from an ability to sidestep or circumnavigate the presumed pitfalls of a life with prosthetics, or what other people perceive as my disability. But, in fact, we are changed. We are marked, of course, by a challenge, whether physically, emotionally or both. And I am going to suggest that this is a good thing. Adversity isn't an obstacle that we need to get around in order to resume living our life. It's part of our life. And I tend to think of it like my shadow. Sometimes I see a lot of it, sometimes there's very little, but it's always with me. And, certainly, I'm not trying to diminish the impact, the weight, of a person's struggle.

There is adversity and challenge in life, and it's all very real and relative to every single person, but the question isn't whether or not you're going to meet adversity, but how you're going to meet it. So, our responsibility is not simply shielding those we care for from adversity, but preparing them to meet it well. And we do a disservice to our kids when we make them feel that they're not equipped to adapt. There's an important difference and distinction between the objective medical fact of my being an amputee and the subjective societal opinion of whether or not I'm disabled. And, truthfully, the only real and consistent disability I've had to confront is the world ever thinking that I could be described by those definitions.

In our desire to protect those we care about by giving them the cold, hard truth about their medical prognosis, or, indeed, a prognosis on the expected quality of their life, we have to make sure that we don't put the first brick in a wall that will actually disable someone. Perhaps the existing model of only looking at what is broken in you and how do we fix it, serves to be more disabling to the individual than the pathology itself.

By not treating the wholeness of a person, by not acknowledging their potency, we are creating another ill on top of whatever natural struggle they might have. We are effectively grading someone's worth to our community. So we need to see through the pathology and into the range of human capability. And, most importantly, there's a partnership between those perceived deficiencies and our greatest creative ability. So it's not about devaluing, or negating, these more trying times as something we want to avoid or sweep under the rug, but instead to find those opportunities wrapped in the adversity. So maybe the idea I want to put out there is, not so much overcoming adversity, as it is opening ourselves up to it, embracing it, grappling with it, to use a wrestling term, maybe even dancing with it. And, perhaps, if we see adversity as natural, consistent and useful, we're less burdened by the presence of it.

This year we celebrate 200th birthday of Charles Darwin, and it was 150 years ago, when writing about evolution, that Darwin illustrated, I think, a truth about the human character. To paraphrase, it's not the strongest of the species that survives, nor is it the most intelligent that survives, it is the one that is most adaptable to change. Conflict is the genesis of creation. From Darwin's work, amongst others, we can recognize that the human ability to survive and flourish is driven by the struggle of the human spirit through conflict into transformation. So, again, transformation, adaptation, is our greatest human skill. And, perhaps, until we're tested, we don't know what we're made of. Maybe that's what adversity gives us, a sense of self, a sense of our own power. So, we can give ourselves a gift. We can re-imagine adversity as something more than just tough times. Maybe we can see it as change. Adversity is just change that we haven't adapted ourselves to yet.

I think the greatest adversity that we've created for ourselves is this idea of normalcy. Now, who's normal? There's no normal. There's common. There's typical. There's no normal. And would you want to meet that poor, beige person if they existed? (Laughter) I don't think so. If we can change this paradigm from one of achieving normalcy to one of possibility, or potency, to be even a little bit more dangerous, we can release the power of so many more children, and invite them to engage their rare and valuable abilities with the community.

Anthropologists tell us that the one thing we as humans have always required of our community members is to be of use, to be able to contribute. There's evidence that Neanderthals, 60,000 years ago, carried their elderly and those with serious physical injury, and, perhaps, because the life experience of survival of these people proved of value to the community: they didn't view these people as broken and useless; they were seen as rare and valuable.

A few years ago, I was in a food market in the town where I grew up in that red zone in northeastern Pennsylvania, and I was standing over a bushel of tomatoes. It was summer time. I had shorts on. I hear this guy, his voice behind me say, "Well, if it isn't Aimee Mullins." And I turn around, and it's this older man. I have no idea who he is.

And I said, "I'm sorry, sir, have we met? I don't remember meeting you."

He said, "Well, you wouldn't remember meeting me. I mean, when we met I was delivering you from your mother's womb." (Laughter) Oh, that guy. And, but of course, actually, it did click.

This man was Dr. Kean, a man I had only known about through my mother's stories of that day, because, of course, typical fashion, I arrived late for my birthday by two weeks. An so, my mother's prenatal physician had gone on vacation, so the man who delivered me was a complete stranger to my parents. And, because I was born without the fibula bone, and had feet turned in, and a few toes in this foot, and a few toes in that, he had to be the bearer, this stranger had to be the bearer of bad news.

He said to me, "I had to give this prognosis to your parents that you would never walk, and you would never have the kind of mobility that other kids have or any kind of life of independence, and you've been making liar out of me ever since." (Laughter) (Applause)

The extraordinary thing is that he said he had saved newspaper clipping throughout my whole childhood, whether it was winning a second grade spelling bee, marching with the Girl Scouts, you know, the Halloween parade, winning my college scholarship, or any of my sports victories, and he was using it, and integrating it into teaching resident students, med students from Hahnemann medical school and Hershey medical school. And he called this part of the course the X Factor, the potential of the human will. No prognosis can account for how powerful this could be as a determinant in the quality of someone's life. And Dr. Kean went on to tell me, he said, "In my experience, unless repeatedly told otherwise, and even if given a modicum of support, if left to their own devices, a child will achieve."

See, Dr. Kean made that shift in thinking. He understood that there's a difference between the medical condition and what someone might do with it. And there's been a shift in my thinking over time, in that, if you had asked me at 15 years old, if I would have traded prosthetics for flesh and bone legs, I wouldn't have hesitated for a second. I aspired to that kind of normalcy back then. If you ask me today, I'm not so sure. And it's because of the experiences I've had with them, not in spite of the experiences I've had with them. And, perhaps, this shift in me has happened because I've been exposed to more people who have opened doors for me than those who have put lids and cast shadows on me.

See, all you really need is one person to show you the epiphany of your own power, and you're off. If you can hand somebody the key to their own power, the human spirit is so receptive, if you can do that and open a door for someone at a crucial moment, you are educating them in the best sense. You're teaching them to open doors for themselves. In fact, the exact meaning of the word educate comes from the root word "educe." It means, to bring forth what is within, to bring out potential. So again, which potential do we want to bring out?

There was a case study done in 1960's Britain, when they were moving from grammar schools to comprehensive schools. It's called the streaming trials. We call it tracking here in the States. It's separating students from A, B, C, D and so on. And the A students get the tougher curriculum, the best teachers, etc. Well, they took, over a three month period, D level students, gave them A's, told them they were A's, told them they were bright. And at the end of this three month period, they were performing at A level.

And, of course, the heartbreaking, flip side of this study, is that they took the A students and told them they were D's. And that's what happened at the end of that three month period. Those who were still around in school, besides the people who had dropped out. A crucial part of this case study was that the teachers were duped too. The teachers didn't know a switch had been made. They were simply told these are the A students, these are the D students. And that's how they went about teaching them and treating them.

So, I think that the only true disability is a crushed spirit, a spirit that's been crushed doesn't have hope. It doesn't see beauty. It no longer has our natural, childlike curiosity and our innate ability to imagine. If instead, we can bolster a human spirit to keep hope, to see beauty in themselves and others, to be curious and imaginative, then we are truly using our power well. When a spirit has those qualities, we are able to create new realities and new ways of being.

I'd like to leave you with a poem by a fourteenth-century Persian poet named Hafiz that my friend, Jacques Dembois told me about. And the poem is called "The God Who Only Knows Four Words." "Every child has known God, not the God of names, not the God of don'ts, but the God who only knows four words and keeps repeating them, saying, come dance with me" Come dance with me.

Thank you. (Applause)
Now, that is called spirit. The indomitable human spirit which took Aimee Mullins from a bedridden double amputee to a fashionable super(role)model. Get ready and display some of that courage on your own.


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