She is the girl who goes around campus on a Segway. Before I got to know her, I seldom thought twice about her peculiar way of on-campus transportation. Occasionally I was even envious of the fact that she got to move around so swiftly while I toiled on my feet trying to show up to that 9 o’clock class. So, it wasn’t surprising that, when she stood up during the campus forum held by President Reveley and Rector Stottlemyer last semester, speaking passionately from her own experience and urging the administration to further improve accessibility on campus, I felt plunged into guilt. I met with her two weeks later and we had the following conversation. The lines in italic are mine.
Are you comfortable letting people know what your condition precisely is, if people are curious?
I’m really conflicted, because on one hand, I really like the people around me knowing my limitations that I have to deal with every day, what I can and can’t do. When I become someone’s friend or acquaintance, I want to tell them, because it’s an important part of my daily life. But then there are also instances where a complete stranger will come up to me and ask, “What happened?” or “What’s wrong with you?” Obviously that is a little problematic. I’m not there to satisfy people’s curiosity.
I’ll talk about it though, because I want the William & Mary community to understand my experience a little better. I was born with a hereditary neurological condition called Charcot Marie Tooth disorder. I started using a wheelchair when I was fourteen, because the nerves on my feet got really bad and it was painful to walk. It’s really not fun to become disabled at 14. Or really any age. It was rough. I was in high school, and people didn’t understand, because I could walk still, just not far. So I was called both a liar, for “lying” about my illness, and then also a cripple, for being in a wheelchair. It was interesting because people just wouldn’t be willing to help me, which was really tough for me to deal with. I even remember I was getting off a bus one time and I needed help getting my wheelchair off, so I asked my friends to help me. They said they were too busy and walked away. Literally every single person in the bus walked away, while I stood by the bus, unable to follow without my wheelchair, and unable to carry it down the bus’s steps. It was just such a defining moment in my high school career. People cared so little or weren’t willing to put in the effort to help me or get me places, so I slowly started believing that I wasn’t worth the effort. For years, I wasn’t conscious of it but I wouldn’t really complain about things not being handicap accessible. “It’s just me, and I don’t really matter that much,” that’s the attitude I had. Daily life can really suck when you unconsciously think you’re worthless.
My senior year of high school, I was an exchange student in France for a year. There’s this place called Mont Saint Michel, which is this beautiful abbey. It’s on an island off the shore of Normandy. I went there with the entire group of exchange students, and it’s all stairs up a really steep hill. So I said to myself, “I’m in a wheelchair. I’ll be sitting down at the bottom the entire day. That sucks.” I was really bummed but I knew that was going to happen. It was interesting because the leaders of the group didn’t even think that was an option. They instead said, “Okay, how are we going to get her up these stairs?” They didn’t even consider leaving me down at the bottom. So all the fifty exchange students carried me up the steps in my wheelchair so that I could get to the top and see an amazing view. I saw that attitude and I thought: “Why don’t I have that attitude?” I always ask myself: “Is it possible for me to participate? Can I accomplish this?” I don’t ask myself: “How am I going to participate? How can I accomplish this?” It struck me really deeply when I saw the attitude of my leaders. They thought I was worth it, so I was going to think that way too. It was a long journey to make that happen though.
I’ve been thinking about that this year, and I’ve just realized that I’m tired of not being able to get to class because of broken elevators or snow, or even things like having to go all the way around a building and use a really dingy entrance. I started to actually believe that I should be able to enter buildings as easily as everybody else. What a novel idea! It kind of takes its toll when you keep on being forced to use exits that are dingy, or have such a hard time getting into buildings. I don’t know…it just makes me feel like I’m not valued, and that people don’t really care. I’m trying to start conversation about this, because I don’t want buildings to be just handicap accessible by the laws standards. I want them to be easy to get in, and I want to be able to get to all the classes on campus, the language houses, the Reves Center, the second floor of PBK – all these places are inaccessible to me right now.
What do you think was the driving force behind your group in France when they helped you up?
I talked to the group leader later on, and he said he had a friend who became paralyzed from the waist down. He told me, “If I had had the decision about whether my friend should live or die, I would’ve let him die. I didn’t think a life stuck in a wheelchair would be worth living.” But then he saw his friend go water-skiing, and have a fruitful life after his accident. My group leader was shocked, seeing his friend living his life to the fullest despite having challenges. He said to me, “Once I saw your application,” which said I was in a wheelchair, “I wanted to provide the opportunity for you to live here.” I think when he accepted my application, he wanted to try to make sure I could do the same things as everybody else. That was one of his goals.
Both in your case and in general, the help that you get has to come from people around you, or the institutions that you stay in. You talked about how, when you were in high school, you started to get a little complacent about things, but now you are demanding more. Do you think it is a burden that you could potentially put on other people? What do you think other people would think of you for doing that?
Many groups may see me and consider me a burden. But that’s because they only see my physical difficulties, instead of me as a person. I know I can contribute; I know I offer a unique perspective; I know that institutions should offer me the same opportunities as everyone else. Some people will always define me by my illness, but I won’t define myself that way anymore. Often it takes extra work or effort to make sure things are accessible for me – I suppose this is a burden for some. Other people simply see it as a problem that needs to be fixed, a broken system that favors people who rely on legs instead of wheels.
I know in some ways I can be a burden on my friends, especially when I’m in my manual wheelchair and my friends have to push me. Even with the Segway, my friends have had to help me carry it upstairs in various situations. But I finally started believing that I was worth it, and that, yes they have to push me across some bricks, but my friendship is worth that effort. I don’t think my friends consider me a burden, even when they have to help me. I’ve got some pretty good friends.
I think you deserve to be surrounded by such friends and you are surrounded by such people. At the College, your journey is very much an intensified version of a journey that many students go through, where the support from a small circle of friends can mean a lot and that confidence eventually comes. That confidence is absolutely not the same as entitlement. That’s something that I’ve realized over the past year or so. It’s, as you put it, “worth it.” You find that you are “worth that friendship.” That’s important. I’m glad that you have an inner force that comes from that. That’s beautiful.
A lot of that, for me personally, has come from my faith. I’m a Christian, so I believe Somebody has already died for me – not just somebody, but Somebody perfect – that already shows how much I am loved. Jesus didn’t carry me up a flight of stairs, but he gave his life up for me – a much greater sacrifice. God loves me that much, as well as all the other disabled people and non-disabled people out there. He doesn’t discriminate between somebody who can walk or not – all our lives are so precious to him.
By extension of that, the very fact of being created, of being here as an equal to everybody around you, does that give you a sense of purpose? Purpose in terms of what you personally would do for the rest of your life and what you could do for other people, disabled and otherwise.
I think so. Because that’s such a big part of my life, I really want to share that with other people. People are always comparing themselves, trying to succeed and trying to live a good life. But I already know that God loves us so incredibly much – no matter our physical, mental, emotional condition, no matter what we’ve done or not done – and I want to tell people about that. I know that I’ve failed at this a lot. I want to live the kind of life where I show people that same kind of love.
It’s just wonderful for you to say that. The important thing for you is to love yourself a lot, to feel loved by people, and then to love other people. The fact that you want to do the third thing, on top of the other two, is a very powerful message. Coming back to this issue of disability, since the campus forum, have you talked to people who were directly in charge of this?
I’ve talked to Dean Henderson, who is Dean of Accessibility Services, formerly Disability Services, and she is really great. I feel like she genuinely wants to work on these issues, and she is committed. I’ve also met with someone from Facilities Management. He showed me the plans of some of the improvements that they plan to make on campus, which I think is great. It’s just hard, because from a student’s perspective, I never know that stuff is going on. To me, it’s just like, “Well, I ran into another broken elevator. There’s no ramp here. Does anyone know? Does anyone care?” The campus center is technically handicap accessible, but the ramp is all the way in the back of the building, and is really a pain to get to. And that’s where the Accessibility Office is, ironically. This could be so much better. Sometimes it’s the quality of things too. I want to give credit where credit is due. People are working on things. It’s just that these things should have been fixed long ago. This campus shouldn’t be a nightmare for someone in a wheelchair. And trust me, it still is.
You definitely want it better. People demand better quality all the time in every aspect of life. For you, it’s basic quality of life. What if the brick walks shattered away? People would then have to walk on soggy grass, but your wheels would be able to get through. What would walking people say about that?
I’ve seen in my three years here at least two students who use wheelchairs. I don’t know how they do it. I have the Segway because I can’t physically get around campus in a manual wheelchair – the sidewalks are awful, and the “accessible” paths are often the longest way around buildings. I still miss class sometimes because of some accessibility-related issue. It’s not every day, but it still brings up the question “why is this still a problem?” There are also some classrooms that still aren’t accessible.
One of the reasons why I didn’t think about helping people with disability as much as I should was the fact that I knew very little. Is there a student group on campus from which we could learn more about experiences of physical disabilities around us and how we could help?
There is a new club on campus. I don’t think it’s officially a club yet, but we have a constitution and we are submitting it. It’s called Corpus. It’s for anyone who has any type of physical impairment, mental illness, disability, or people who aren’t ill in any way whatsoever – just anybody basically. It’s a group for both advocating for change and for spreading around awareness of any type of illness or disability. We have a Facebook page, and you should check us out!