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Thu October 18, 2012
Legs Lost, But Still Climbing High
Originally published on Fri October 19, 2012 8:21 am
A lot of people would like to climb Mount Kilimanjaro. At a little over 19,000 feet above sea level, it is Africa's highest peak. Many want to do it to raise money for a cause or just to prove to themselves or the world that they can. And some people, like Spencer West, actually make it to the summit.
But not many people do it the way he did — using just his hands, arms and an irrepressible spirit.
Spencer West tells that story and others in his evocative new memoir Standing Tall.
In his interview with Tell Me More's Michel Martin, West describes how his parents infused him with the idea that he could do anything, despite his being born with a rare genetic disorder that prevented his legs and lower spine from fusing properly.
West says that he later learned that only minutes after he was born, the attending physician told his parents that he would never walk or live a "normal" life. But they refused to believe it and instilled the same attitude in him.
"There was no can't or won't," he said, "only how."
West took that attitude and ran with it — in his own way, of course. Both of his legs were amputated below the pelvis by the time he was 5, as doctors thought it would give him more mobility.
Foregoing prosthetics, he learned to get around so well in his wheelchair and on his hands that he became a cheerleader, did theater, graduated from college and settled into a career.
West recounts a few instances when he was bullied, especially in junior high school, when he was knocked from his wheelchair by a kid who then refused to help him up. But again, he decided he was not going to be defined by that experience.
Bored at his job, he began to volunteer building schools and other projects for a nonprofit group called Free the Children, where he learned he could have an impact on people just by doing what he wanted to do anyway.
On his first trip to Kenya, he met a girl who told him, "I didn't know things like this happened to white people." Because of his work with that group, West decided to climb Mount Kilimanjaro to raise $750,000 to support sustainable water projects.
He trained for the climb and set out with his two best friends. The hardest part for West? His friends got altitude sickness and he didn't, and he realized he couldn't carry them physically, as they had done for him during some rough patches.
But perhaps he did carry them in his own way, with the attitude that so inspired music star Nelly Furtado that she allowed him to use the title track from her new album, The Spirit Indestructible, as the soundtrack for a video about his amazing climb.
MICHEL MARTIN, HOST:
I'm Michel Martin, and this is TELL ME MORE, from NPR News. Now we hear from a man who's trying to change the way people think about physical disability. Spencer West was born with a genetic disorder that affected his legs. Just minutes after he was born, the attending physician told his parents he would probably never walk, and, indeed, by the age of five, both of his legs had been amputated.
But earlier this year, at the age of 31, Spencer West climbed Mount Kilimanjaro, the tallest peak in Africa. The climb inspired a lot of people, including superstar singer-songwriter Nelly Furtado, who allowed the title track from her new album, "The Spirit Indestructible," to be the soundtrack for a video about Spencer and the climb. And when you hear his story, I bet you'll understand why. And Spencer West joins us now.
Welcome, and congratulations.
SPENCER WEST: Thank you so much, and thank you for this opportunity. We're so grateful.
MARTIN: Now, your new memoir came out earlier this year. It's titled "Standing Tall: My Journey." So if you don't mind, could you take us back to the beginning and, as briefly as you can, could you tell us why you lost your legs?
WEST: You know, I was born with a genetic disease that caused the muscles in my legs not to work. And they weren't really sure what to do, so I had two surgeries. The first was at the age of two, where they removed them at the knee in hopes that I could use prosthetics, but unfortunately, that didn't work out. So at the age of five, they removed just below my pelvis so I could get around better.
MARTIN: Prosthetics play a big role in your story at this age, and I actually got quite a kick out of hearing about your antics, trying to get out of using them. So why are you so anti-prosthetic legs?
WEST: It just seemed silly. People knew that I didn't have legs. I knew that I didn't have legs. So why should I pretend like I did? And it was so much easier for me to get around on my hands and my wheelchair that it just seemed silly and it seemed like a lie to wear them, to be honest.
MARTIN: And when you say that it seemed so much easier, let me just give an example of some of the things that you were doing as a kid: swimming. You were part of your high school cheerleading squad, and actually participated in statewide competitions. Wow.
WEST: Thank you.
MARTIN: I have to say, I mean, there are so those - some of the things I've seen - I've seen you do these things in videos, and there are a lot of things that people with two legs can't do.
WEST: Well, you know, I think it's like anything. With a lot of practice and some determination, I think anything is possible.
MARTIN: Well, you write over and over again in your book that you had a great advantage. Well, actually, you had two great advantages: your mom and your dad. Tell us a little bit more about that.
WEST: They never treated me like I was different. You know, my mom said, you know, Spencer, we were afraid if something were to happen to your dad and I, that you wouldn't be able to take care of yourself. And if we started to treat you differently, you would think you were different and you wouldn't take the risks you needed to become your own person. And it's really my two parents that set the foundation for me to do the things that I've done, like you said, like cheerleading, like going to college and, you know, traveling overseas.
MARTIN: From the very beginning where people were telling them what you should not do or what you could not do or what you'd never be able to do - things like, oh, well, he should be prepared for a sedentary career, so they should encourage his, you know, interest in reading and things like that because he's never going to be able to do X, Y and Z. They never listened. What gave them the courage to just not listen?
WEST: You know, sometimes, I feel bad about - that we wrote that, because I don't want to vilify the doctors in any way. They didn't know what to do with me, and so they were giving us their best case. But, you know, my parents were really great at, like, no, we've seen what he can do already, and we just don't believe that.
MARTIN: I don't think you're mean about it at all. I completely take your point. And that, I think, exemplifies a very generous spirit that you have, but there was some bullying. Do you mind talking about that?
WEST: The simple one is being in school and going to gym class every day and having to watch two team captains pick person after person to be on a team until I was the only one left. In middle school, you know, there was one student in particular - and, again, I don't think he meant for this to happen. But I was going down the hall and he grabbed the back of my wheelchair just as a joke and I stopped abruptly and, you know, my books fell on the floor and then I tumbled out after them.
And, you know, he did lean in to help me, but he didn't know what to do and he got scared and he ran away. You know, I'm left laying on the ground while students are continuing to walk by to go to their classrooms.
And, you know - and then the emphasis on sports in high school, you know, I just sort of felt like I wasn't a well-rounded student unless I played a sport. And so that's why I wanted to become a cheerleader, to prove that just because I didn't have any legs doesn't mean that I couldn't play a sport, either. I was good academically, so fine. I'm going to show you that I can be an athlete, too.
MARTIN: Then, in 2008, you had another experience that was kind of life-changing for you. You went on a volunteer trip to Kenya, where you helped build a school in a rural town. And I actually get a kick out of the picture that there is of you holding a brick over your head, and you're saying: It's not going to build itself, people.
MARTIN: But what made you want to go, and what did you get out of that experience?
WEST: Well, you know, I had graduated from college with a master's in communication, and I got into the real world and I just wasn't satisfied with material possessions and money. I felt really sort of cheated by society. I thought these were the things I was told that I needed, and now that I had them, I still wasn't happy.
And so a friend of mine invited me to go on a volunteer trip to Kenya to help build a school for an organization based out of Canada called Free the Children. And it was the first time that I'd really seen poverty firsthand. It was the first time that I'd seen international development that was sustainable and actually working and breaking the cycle of poverty.
And the moment that changed my life forever is when we arrived at the Free the Children schools and, you know, 300 kids came running out and circled around me and they literally asked me everything - you know, where was I from, how did I get here, where were my legs, did I leave them in the United States? And after I answered all of your questions a young girl said to me that she didn't know something like this - meaning the loss of my legs - could happen to white people too. You know, that one phrase fundamentally changed the entire course of my life. I didn't realize there was value to my story and I didn't realize that I could actually use it to inspire other people to recognize that, you know, if I can overcome my obstacles, what more can we do every single day as individuals, whether we're in Kenya or here in North America?
MARTIN: So I want hear about how you got the idea for the climb. And if you're just joining us, we're speaking with Spencer West. He lost his legs at the age of five. But earlier this year he climbed Mount Kilimanjaro using only his arms and hands. He's telling us how he did it. And he's also telling us about his new memoir and his life. His memoir is called "Standing Tall: My Journey."
So how did you get the idea for the climb?
WEST: I was sort of feeling guilty. I had been telling students and people that they need to volunteer, they need to fundraise, they need to get involved. And I'd never really ran a fundraising campaign myself and I wanted to be able to talk the talk and walk the walk, so that was the first piece. But the second piece was the founder of Free the Children, Craig Kielburger, you know, came to me one day and he said, Spence, have you ever thought about climbing Kilimanjaro? And of course my answer was no.
WEST: Like, the farthest thing...
MARTIN: That would be all of us. Yeah.
WEST: Yeah. Exactly. So but like anything with Craig Kielburger, and the Kielburgers in general, they plant a seed and it grows and it grows and it grows until you can't ignore it anymore. And so I went back to him because I couldn't stop thinking about it. I said, actually, yes, I really want to do this but there's two things: I don't want to just climb the mountain because I don't want this to be about me. Why don't we create a campaign around it and raise some money? This is going to be the hardest thing I've done in my entire life. I'm going to need my two best friends to come with me. So that's sort of where the idea came from. And then as we know, last year East Africa was facing one of the largest droughts they've seen in over 60 years and suddenly these community members that had helped me now needed my help. So we came up with this campaign, Redefine Possible, to number one, you know, number, climb the largest mountain in Africa to prove to the world that if I was told that I would never walk or be a functioning member of society and can climb the largest mountain in Africa, what more can we all do as individuals to start redefining our own possible? And then the second piece was to raise, you know, over a half a half a million dollars for clean water in East Africa to help offset the drought so they could focus on going to school instead.
MARTIN: Now, it would have been really awkward - to say the least - if you didn't make it.
WEST: And, you know, we went in with a couple mindsets. If we don't make it then there's a lesson to be learned from that and we bring that back and we share that. But we did make it. And it wasn't without its set of struggles. You know, we were hoping that I would be able to do half on my hands and half in a wheelchair because I've had a previous shoulder injury and, you know, contrary to popular belief, your arms aren't meant to be walked on, so I need to hang on to all the limbs that I've got left, so to speak. And but when we got there, it was walking about 80 percent of my hands and about 20 percent of my chair. Halfway through, our guide and my buddies were like, look, Spence, like if we're actually going to make it to the top and back down again, you're going to need to let us help you a little bit. So I sort of relinquished and let them carry me a bit here and there, still walking most of it on my own, but accepting help when I needed it. And then what was so crazy, Michel, is the flipside of that is when we got towards the top, I didn't get altitude sickness at all but my two buddies did. And it was really the first time in my entire life where I wished that I had legs that day.
MARTIN: 'Cause your buddies were not doing well.
WEST: Yeah. And so I could be the one to carry them. But obviously that wasn't the case so I did what I could do, and I stood in between them and in tandem, you know, we walked slowly together until we reached the top.
MARTIN: This has been a very significant year, it seems to me, for people with physical disabilities in the spotlight. I'm thinking about during the London Olympics with Oscar Pistorius, the South African runner...
MARTIN: ...who was, you know, allowed to run with prosthetic legs for the first time. And then, of course, the London Paralympics, which got a lot more attention this year than it often has had in the past. And I'm wondering if you think that we are in a new era now where people with physical disabilities are kind of, you know what I mean, moving the ball along, or at least showing people something new. Do you see what I'm asking? I'm not phrasing this very - I'm not being very articulate.
Do you feel like we've kind of entered a new phase here?
WEST: I definitely we think we have. And I think those are, you know, those are great examples and that was the other reason we wanted to climb Kilimanjaro, is, you know, sometimes I think there's this stereotype that because maybe you are disabled or you've lost limbs or whatever, you know, your challenge might be, is that you don't have something to offer to society or that - you know, I remember one time when I was working at a retail job, a woman came in and she said to me, well, at least you can work. And I thought, what does that mean? Of course I can work. Why wouldn't I work? So I think that's what's sort of happening now, is we're sort of proving that, hey, it doesn't matter like what we look like on the outside; we all have something to contribute to society.
MARTIN: You've actually been sort of offering some words of wisdom throughout our conversation. But before we let you go, we often like to ask people, do you have any wisdom to share?
WEST: For me in particular, it goes back to my parents and how we always focused on what I could do instead of what I couldn't do. There is no can't or won't, only how.
MARTIN: Spencer West is a motivational speaker and author of the new memoir, "Standing Tall: My Journey." He was kind enough to join us from Wyoming Public Radio in Laramie.
Thank you so much.
WEST: Thank you. Transcript provided by NPR, Copyright National Public Radio.