talking with … Emily Harvey and Whitney Harris (part 1)

Emily & Whitney

Emily Harvey (back) & Whitney Harris (front)

I’ve known Emily Harvey and Whitney Harris for several years now. Interestingly, until this interview, I’d never spoken to both of them at the same time.

I first met Emily when she was deciding whether to apply to law school. A mutual friend connected us, presumably because the only person capable of giving this kind of advice to one amputee is another amputee. Whether that actually was the case or not, Emily happily (for her) just completed the Colorado Bar Exam.

I met Whitney when she became a patient model for the company that employs me. At the time, she was getting her undergraduate degree in prosthetics. Now she’s in the middle of her O&P residency in Denver. Among her many noteworthy achievements, she recently completed a climb of the Sears Tower in Chicago with her above-knee prosthesis. (To be clear: she took the stairs.) She has also figured out how to walk upstairs leg-over-leg backwards, which, I have pointedly told her, is just showing off.

Both women grew up with limb loss – a very different experience than “becoming” an amputee as an adult as I did. Whenever I speak to either one of them, I walk away with a new and different perspective on my own life. Put them both on the phone at the same time and start asking questions … you wind up with some interesting answers and insights.

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Dave: Describe the first time you became aware of the fact that you used a prosthesis and that this was somehow different from what other kids your age did.

Whitney: I’m not sure that I ever really became aware of this fact until I was in high school. It seems like the older I get, the more aware I get. When I was little I never thought anything about it. I didn’t meet my first friend without limbs until I was in college. I hung out with people with disabilities, who had, like, cerebral palsy, but I never related to that.

I don’t know, I think I have … it’s a very weird self-image that I have. Growing up, there was never a point where I was bothered or upset or thought it was blatantly obvious that I was different.

Emily: I had to think about it because I couldn’t really remember a point in time where I was like, “Oh, I’m different.” But my grandma tells me this story about when I was about 5 or 6 and we were riding in the car. And I turned to her and I said, “So Grandma, when did you get your first prosthesis?” [All laugh] She doesn’t wear a prosthesis. It was just in my head that everyone wore a prosthesis – that was just normal.

The other thing that I think of where I was aware as a kid was – I got to go to “Champ Camp” in Louisiana. It was a Shriners’ thing and it was for 3 summers. My brother was really jealous and would say that he was going to cut off one of his limbs so he could go to camp [Whitney laughs] because he thought it was so cool that I got to go to camp.

Dave: I know that as an adult traumatic amputee, your whole self-image is so disrupted by losing a limb that it can become all-consuming. It becomes who you are. You don’t have anyone there to be a buffer between you and that reality as an adult. As young children growing up with limb difference, both of you had parents who were at some level mediating how you perceived and saw the outside world. How did your parents influence how you both saw yourselves?

Emily: My mom, she treated me the same way that she treated my brother. I actually think she was harder on me sometimes. I think that was just because I was an older child. But the only thing that was really different was that I had to go to a lot more doctors’ appointments than my friends. If I legitimately had an issue with my leg, she would allow that to be a reason why I wouldn’t do something, but she wouldn’t let me use it all the time as an excuse. So she basically treated me like a normal kid. We didn’t talk about it or anything like that.

Whitney: My mom never really sat me down and talked about it either. My amniotic band syndrome, no one knew about it till I was born. So I think that kind of shell shocked everyone and kind of put them in the perspective that, “We weren’t aware so we’re just going to treat her like everyone else.” And I’m the second-oldest of 5 kids, so I definitely got treated like everyone else.

I got in trouble just like my other siblings. I got in trouble for leaving my leg in the middle of the floor when I took it off so people would trip on it. I’m very curious about my mother’s perspective, but I think she just kind of blocked it out – that I was different – and just went with it.

Dave: How did you both deal with your limb difference in your interactions with dates, as you were meeting new people in high school? Was it something you flagged up front? How did you address it if you addressed it at all?

Whitney: I don’t know that I did address it. It seems like in high school I didn’t date until later. The only difference was that if we were going and doing things and I wanted to take my prosthesis off, I would just take it off. And if anyone thought that was weird or it made them uncomfortable, I wasn’t aware of it.

In college, my college boyfriend actually told me that he was uncomfortable being with me in public because he didn’t know how to act when people stared at me. Of course, I didn’t notice but he noticed. He made it a big thing. We stopped going places and we didn’t ever hang out in public. I called him out on it and I was so incredibly offended by that answer. I think that’s been the only real time where I thought, “I kinda am different. Apparently my boyfriend thinks I’m different.” Other than that, I just never bring it up because I just feel like being without my arm and leg is such a huge part of my personality. I think people get that when they meet me.

Emily: I was horse crazy in high school and would get asked out but didn’t usually go out with anybody because I was too busy with my horse. So I didn’t really deal with it in high school, I guess. My friends and I played a lot of pranks with my leg in high school, so everybody pretty much knew about it going in.

I guess I was just kind of trying to read the situation and decide whether if it was something I needed to mention to someone beforehand, before a date. But I don’t think I usually did. Or I would just show up wearing shorts or a dress and it would just be there for everyone to see.

Dave: Emily, you’ve blogged about this. How have your perspectives on prosthetic cosmesis changed over time?

Emily: Back in the day when I was a kid, my first prostheses were kind of shaped like my other leg, but since my residual limb is so lumpy and crooked and long, it was really hard for them to get a normal-looking shape. I know they worked really hard on it.

My first foot was a SACH foot that looked like a boot. It didn’t have any fake toes or fake toenails that I could paint. I would draw lines to make 5 toes and then draw in toenails.

In ’96 we went to the Paralympics and I saw a guy who was a dancer. He was at one of the parades and he had a red and black and silver and gold sparkly leg. I went up and talked to him and I was like, “How do I get one of those? I hate the stupid pigmented-not-the-right-color-not-the-right-shape silly thing. How do I get one of those?”

When I went home and talked to my prosthetist I was like, “Bill, why didn’t you ever tell me that I could get a cool leg?” My prosthetist for most of my life growing up once we moved to Washington was an older man who had lost his leg while cutting down trees, so he was really into the old school stuff. He just didn’t even think to tell me about it.

As soon as I knew I could have a cool-looking leg I went in that direction and never thought about going back until I was working at Walter Reed and had the option to get a prosthetic leg and [one of the prosthetists there] talked me into it. He was like, “Wouldn’t it be cool?” I have worn it a couple of times. I wore it at my friend’s wedding.  She didn’t care, but I didn’t want to distract her guests’ attention away from her, so I was glad to have it for that.

But I always go back to liking the robo-look. That’s how I see myself and that’s what I’m comfortable with, so it’s weird for me to have my cosmetic leg on and go out in public. It takes away a little bit from my self-image, I guess. The first time I wore it at work at Walter Reed, someone walked right past me and didn’t realize it was me because he saw two legs and was like, “That’s not Emily!”

Whitney: I got my first prosthetic cover – I must have been in elementary school. I thought it made my leg look so bad that I was just appalled. So I never wore it. Cosmetics never bothered me. They bothered my prosthetist more because I was born with my knee being skewed. I had a little bit of bone coming off the back of my leg at a 90-degree angle. He always thought it was a really hard fit though it never actually was. So finally, when I was 16, he convinced me to get a revision and I still to this day am not sure if that was the right decision. Because now I have an actual incision adhered to the bone and nerve problems in that area. I don’t know that it was worth just the fact that now my leg looked prettier in the socket.

Walking was always more important to me. So I never knew [growing up] how I walk. I could walk terribly and think I’m the best damn walker ever. I think that’s a problem too, because I went to Shriners all of my life up until age 20, and that’s what my prosthetist told me – that I was one of the best walkers in the hospital out of all of his patients. It wasn’t until I got to O&P school and then it wasn’t until I started wearing my [current knee and a prosthetist] finally started calling me out on my gait deviations and I was just mortified. Now I’m a little bit more aware of it and I try a little bit harder to walk better. I do take a lot of pride in that but I’m not one to tell everyone I think I’m a good walker. I’d rather them tell me.

Emily: Like Whitney, I was a Shriners patient and had people consistently tell me I was good walker. Then they put me in a gait lab and put all the little stickers on [me] and showed me that I wasn’t a perfect walker. I was good but I wasn’t perfect. I was definitely more acutely aware of how I walked after going through that gait analysis.

Whitney: I don’t ever really talk about it, but I have a cosmetic arm that I really like to wear because it helps me walk better. I have a much more symmetrical gait because my torso can move better with the weight of the arm. When I wear it I like how I look with it, but I just get so much more attention that I feel like people may think I wear it for the attention aspect. It’s really incredible. And I know you probably notice, Emily, whenever I do wear it, I feel like I get obsessed with talking about it and then other people get obsessed with it and then I feel bad. And so sometimes I want to wear it for the sake of walking and making my back feel better, but then I don’t want to be the center of attention because now I have my arm on, even though I think it looks great with a long sleeve shirt.

Dave: So how often do you wear that Whitney? Because for all the time I’ve known you over the last several years I’ve never seen you wear it.

Whitney: I usually wear it at conferences. Like I wore it at the [Amputee Coalition conference] this last summer. But I definitely don’t wear it all day. Yeah, that’s really it. Or sometimes when it’s really cold and I want to keep my arm warm, I’ll put it on.

*   *   *

Stay tuned for part two of my talk with Emily and Whitney next week. Topics include Shriners hospitals, coordinated health care, and why both of them wound up in such close proximity to the O&P profession, both personally and professionally.

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