The Segway Girl

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.

Henshaw2

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!

Sticking together

Did I tell you how my dad got a new teaching job while I was in high school? He had been unemployed for like, I don’t remember, a year or two maybe. And he got this job. And it was a few days before school started. He found out on a Thursday and then school started on Monday – it was such a whirlwind. We were just so excited for him that he got this job, though. But then after the excitement settled he realized that the new school had a rule that your kids have to go to school there if you teach there; they said it was a way of ‘showing support.’ They were going to let me out of the rule that year because classes had already started, but it would apply next year. They were still going to let me out of it, though, because it would have been my senior year and it would have been mean to make me change schools. But they weren’t going to let my younger brother, JonDavid out of it. And I just told you how I’m probably going to cry telling you this but… he would have had to go to this new school by himself. And that just made me so sad to think about because… I just miss him a lot. My siblings and I have all been so close. We always just followed each other all the way through school. And then I realized that he was going to have to leave and wouldn’t be able to share the rest of the experiences that we had. So when I realized he was leaving, I just went with him. Because I didn’t want him to go by himself. And I’m so glad that he went to this new school because I feel like he has such better friends there. And I think overall it’s better for him. I don’t know how much I had to do with it, but being with him that year was way more important than finishing my senior year at my old school.

So you left for your senior year?

Yeah. That’s like my one really good story. Like I wrote about it for college and everything.  That’s my one story.

How did you tell him about your decision?

I was never sure. I think that he knew that I was vaguely considering it because we both went to prospective student day. I just went for the heck of it because I was interested and I wanted to miss school and stuff. And I was like “oh yea they’re fun I like them!” I tried to not tell him because i didn’t want to ever get him excited and then not follow through.
I talked about it for a long time with my dad. Back and forth back and forth. I talked about it a lot with my older brother. A lot of people were really not supportive of it. My older brother was not supportive, my teachers were really not supportive. I think my dad really wanted me to go but was trying not to sway me. I remember I decided when I was on a bus.  I thought “I have time to think right now so I’m just going to sort it out right now and make a decision about it”. So then I decided I was going and I texted my dad and he was really excited. So I came home and asked my brother how he was feeling about changing schools. I would periodically do that because I knew he was scared and sad. So I asked him “how do you feel about changing schools?” and he said “fine, I guess” and I said, “would it feel better if I was there?” and he was like “yeah, but what do you mean?” and I said “I’m gonna come. I’ll be there.” And he just started freaking out.

Campus Golf Caddy

What was your favorite part of Campus Golf this year?

Campus Golf is definitely one of my – and hopefully the rest of campus’ – favorite days of the year! This was my first year as a KD, and it was so memorable, running around the Sunken Gardens, laughing, dancing, and helping one another out. It’s so great to see all of us come together for twelve hours on a Saturday to celebrate with the campus, and raise money for causes that we are so passionate about!

I think the best part of the day was when everyone was on the Sunken Gardens waiting for the first teams to arrive at 8am, everyone had just consumed massive amounts of coffee, the music was on full blast, and we were ready to start the day. As each of the first few teams came, everyone cheered and yelled. When Reveley came we made a tunnel for him to run through, and he was quickly followed by the entire sailing team! You meet so many new people during Campus Golf, and it was really great to walk the course and learn more about the members of our campus community, and it’s one of those days like orientation, convocation, and Yule Log that make you realize how special William and Mary really is!

What was your favorite team costume this year?

We saw so many costumes ranging from Disney Princesses, to superheroes and even a group dressed up like KDs! But I think one of the best was a group who coordinated tee-times, and each one came dressed as a different Harry Potter character. There was so much creativity – it was incredible!

How do you think this year’s Campus Golf event went compared to other years?

I don’t have a lot to compare the event to, since it was my first one from the inside, but from the amount of laughing, smiling, and instagramming I saw taking place on the course, I can only imagine everyone who came had a great time. It’s great to see wonderful things happen alongside such incredible people, and I’m already looking forward to next year!

Campus Golf supports Avalon: A Center for Women and Children and Prevent Child Abuse America. You can learn more about these organizations at http://www.avaloncenter.org and http://www.preventchildabuse.org

The Step

Siobhan03How did you meet?

Well, we’re both from New Jersey and we met at an Early Decision reception. We hung out a few times before school started.

Yeah, we met at the Early Decision thing and everyone was very nervous. We were all sitting in a room, and we were sitting directly opposite each other, so we were just kind of looking at each other the whole time. Everyone was being very quiet, and we were two of the only people raising our hands and talking, so I was like, “oh, that girl is smart.”

What happened when you got to school? As in how did the relationship escalate?

We were initially friends, and then I guess we really found each other when we came out. We did it at the same time and that created a very strong friendship, and from there, we spent a lot of time together. We talked a lot and it just grew into something more.

She was the first person I told that I liked girls, and she helped me through that. And telling your families at the same time really builds a support structure with that person. So you know you have them to help you through it.

How did the initial relationship conversation go?

Well we were definitely having a hard time transitioning from friendship to relationship, and we were very back and forth. So I was under the impression that she didn’t really want it to work and we were just going to be friends. I was getting ready to take that blow because she looked like she was preparing to say something really intense.

We were in the room, and we had been kind of on and off. It’s just very complicated when you’re dating the very first girl you’ve ever dated. She was bracing herself for me to say, “I think we should just be friends” and I was like, “I think…that I want you to be my girlfriend.” And that was the most I could muster at the time. I wasn’t confident enough to be like, “will you be my girlfriend?” Saying, “I think” was the most that I could muster for myself.

That definitely took a lot. You’re very strong for that.

So tell me why the spot you’re sitting in is so important to you?

So early on, before classes picked up, we would stay out super late. She used to walk me home at night, but we didn’t want to say goodnight yet, so we would sit on that step. Oftentimes, we would have really deep conversations. Not necessarily always about each other; sometimes it would be opinions about our society or the world around us.

That was also the first place I told her I loved her.

Yeah, she was saying goodnight to me there one night and we had been fighting and we were both really frustrated. Eventually, we just decided to drop it.

I have no idea what it was even about.

*laughs* Anyway, we reached a conclusion and we were feeling very close and loving again.

And I said, “do you trust me?” and she said “yes.” And I said, “okay, close your eyes, count to ten, and then open them.” So I positioned her in front of the door and she closed her eyes. And I said, “I love you.” And I walked away because I didn’t want her to feel pressured to have to say it back. Then I started to run away, and she jumped on my back behind me.

I wasn’t going to let her run away like that because it was something I truly wanted to say back. And now we always think about being upperclassmen and walking by this building and just thinking of all the memories that we made here.

Tell me about the presents you got each other.

We decided to incorporate this spot into our Valentine’s Day gifts. So I got her a bracelet with GPS coordinates of the spot.

I knew I was going to make a drawing for her to put in her room. So I drew a picture of our spot so that it could be memorialized.

What is love to you?

I think love is finding someone, whether it be romantic or a friendship or family situation, that you trust and respect, and you know you can lean on them and they can lean on you. I think it’s just knowing you’re not alone in the world, I guess. And there’s someone who’s there with you, and who cares about you.

For me, love is understanding. I didn’t always feel like I had people who understood me really well. And that’s really changed, and so much confidence has come from having somebody who just understands me, whether we agree or not. I think that’s a really big deal because when I first got to school, I had a hard time being myself and being committed to this relationship because I grew up with this mentality that love couldn’t exist between anyone but a man and a woman. And now that I’m in this situation, I understand that love is so much more than that. Love can exist between anybody. I think it’s good that I learn that; I’m glad she’s taught me that.

 

 

Birthday Girl

IMG_3501What did you do this snowy weekend?
It was actually my birthday weekend, which was fun. I turned 21. I have a ton of family members reaching out to me and asking me what I did for my 21st birthday, and I told them that I essentially sat in my friend’s room and ate ice cream with them but I don’t regret any of it. It was a fun time. I tend to have the most fun when I’m with people I care about, so it was a really good birthday.

The Sledder

How was your snow day?

I’m a big believer in the senior – or now grad student – bucket list. I love snow and sledding and had never been out to sled in the CW golf course. When the snow came down, I knew I would be able to cross it off my list. I’m also a big believer in impromptu fun and living in the moment, so naturally I didn’t warn anyone Allison 01b- The Sledderabout my plans. Ultimately, four friends joined me to sled and it was an incredible time. Armed with a sign we found and a piece of siding from Ace, we went all over the course, spending nearly three hours taking on the hills. I love this school, and I’m so thankful that it’s full of people who will live every moment with me.

What is your favorite snow-related childhood memory?

There’s a big gully in the woods behind the house where I grew up. The gully was amazing for sledding. Every time the snow came down, friends from the surrounding neighborhoods came to my house to sled. It was just a given: snow day means Heather’s house. You start at the top of a hill, go around a corner, weave through some trees, and then end in a creek at the bottom. We would form trains or sled standing up or with people lying on top of one another. That’s why I still love snow days and sledding so much now. It means I get to gather my friends and just forget everything but living in the moment.

What do you love about W&M’s campus during winter?

I love how this campus never sleeps, not even when it’s freezing and the snow has turned to hail to sleet to frigid rain. When the snow rolls in, you really get to see the creativity and spirit at this school. People sled in trash bags, on pans, on their stomach. The Sunken Gardens become an art gallery for snow sculptures. I love how this campus just forgets everything and lives for fun when the snow comes down.

Speak (write) out

What are you doing here out by the lake?

“I am actually writing for W&M Speaks. It’s officially up and running, and we’re excited to see people start sharing their stories. It’s weird to have to now turn and share mine, and sort of put myself out there as well.

“I joined the Mental Health Branch [of HOPE] both for the desire to answer a lot of needs I saw firstly on campus but also needs I saw in myself. I don’t know, I think shattering the misconception that those of us who are part of these organizations or who speak out, we do so from a place of experience. We do so because we are not perfect either. I don’t know is that makes sense.

“I think we [in the Mental Health Branch of HOPE] all come from a place of wanting to create change and wanting to empower other people to create change in their own lives. It has been really interesting seeing the way in which we all sort of bring different things to the table, but having that same base core desire enables us to use our different skills and talents in a much larger way than we would be able to individually. So, that’s been amazing to see come to fruition. ”

Can I ask why you came down here to Lake Matoaka to work?

“I am a writer, and I have always loved water. It’s a huge thing for me. It’s actually sort of weird that you would ask that, though. I actually came down here for a very specific reason in that my favorite band broke up five days ago – Dry the River, there obscure. It’s awful, but all the same they had this really tangible effect on me. They had a habit of releasing albums when I felt like I needed something new in my life. So they broke up. One of their songs is called ‘Vessel,’ and I ended up getting it tattooed almost a year ago today. It felt right to come down here. You know – vessel, water, boats and everything – to just sort of see that and work through those feelings. Think about time passing, a lot of pretentious writer stuff.”

Your morning Jo

“It’s really nice first thing in the morning because we’re the first people students see since they want their cup of coffee to get going. It’s nice that we start off their daily routine. Throughout the day you see the students get more tired, or the ones who are just waking up at 2 o’clock in the afternoon, who are about to go to their first class. It’s nice seeing the students when they’re not stressed, but you can definitely tell when they’re in line and they’re stressed; they have bags under their eyes, and just want that cup of coffee. But it’s especially nice towards the end of the night because people get really friendly, like, they understand that it’s been a long day. So, it’s nice seeing the transition to the late students.

“I know sometimes we’re super tired when we first open, so we’re not super outgoing. It’s definitely hard to have a really perky mood at 8 o’clock in the morning when students come through. They just want a cup of coffee, and ‘have a nice morning.’ They don’t want to deal with anybody who’s rude like you can find at other places, like what happens at Starbucks.”

A Place for Us

“I knew coming into college that I wanted to find a group for black students or minority students. Now I’m now in a group where everyone is really welcoming; it’s a very inclusive group of young women. It just reaffirms my belief that even though we are the minority at this school, there is still a place for us and there will always be a place for us.

“Recently, we talked about Raven-Symone’s comments on not hiring people with ‘black-sounding’ names and what that meant for each of us, and how we can combat that and make sure other people don’t feel the same way. We do stuff on campus – we were in the homecoming parade and we are putting together a discussion on black aesthetics. It’s basically a safe space for all of us and it’s all for women of color, no matter how you identify, just to talk.

“There are historically black sororities and fraternities on campus but they aren’t given the publicity that all of the other predominantly white sororities are. So I know in that regard, there’s a pretty large disparity. The spaces that black people have created on campus…I don’t know if it’s maybe less funding or just not being given the notice on campus that other organizations have. I know that’s pretty touchy though. But as far as interpersonal relationships, I think everyone is respectful. And if there are ignorant people on campus, they aren’t the majority. In terms of the student body and how we deal with diversity, I think we’re really good.”

The Little Things

“It was the morning of Hurricane Joaquin and I decided to take a walk through CW to cheer myself up, and to escape from my house. I stopped at Aromas to have coffee, and this lovely old man that was sitting near me turned to me and says, ‘How can you be so happy with everything that goes on in a college student’s life?’ At first, I didn’t know what he was saying because I wasn’t very happy at the moment, I wasn’t radiating happiness, I was probably radiating stress because it was in the middle of midterms. I thought, okay, I have to answer his question, he seems like a very nice, friendly person. So I thought about it for a bit and then said, ‘I think you have to find some little thing in your day that brings joy to you. Because there is always something every day to be grateful for whether it’s seeing your best friend on campus and running up and giving them a hug, or a phone call from your mom saying I’m making your favorite dinner tonight and saying, I wish you were here. I don’t know, there are just so many little things that if you choose to see as happy, can change everything.’”

“Third Culture Kid”

What was it like living abroad for most of your life?

“For me it was normal. It’s because that’s where my frame of reference is. Moving back to the United States for high school was very different. I had culture shock which is funny because I look American and I sound American. But culturally I didn’t fit in.

“I am what you call a “third culture kid,” which means my cultural identity is a mixture of my home culture which is the US, my passport country, and my host country which was China. So in that sense I can fit into both but I don’t belong in either. So I never quite fit in here in the US. And I clearly don’t fit in there.

“All my moves have been growing experiences. I have lived in China for fourteen non-consecutive years. The community I lived in was very transient. You know someone would stay for about two years, but you afterwards you can’t guarantee it. So it changes the way you look at life because you don’t take timing for granted. Here at college is the first time I know I am one place for four years. And for me that was a very, very odd idea. To be able control my life like that. It almost doesn’t feel real.

“Being a third culture kid impacts the way I view things, in terms of relationships, friendships, or whatever. I’m thinking “Oh man we only have so many years together, I am like ‘we need to be best friends now.” But for people who didn’t necessarily grow up in that context, they don’t always feel that same sense of urgency. Sometimes I’ll meet another third culture kid and I will hit it off and by day two we will be talking about our deepest fears. But for someone else we might not get to deepest fears until like year two of the friendship.  It’s just a very different way of approaching things.