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New Beginnings

            My name is Audrey Keller and I spent pretty Imagemuch my whole life dreaming of coming to Duke. Everything was on track with this plan when I was accepted Early Decision in December of 2011. However, this dream of being a part of the Class of 2016 was nearly snatched from me on June 13th, 2012, when my horse flipped over on me, crushing the bones in my pelvic region.

            One of the first questions I remember asking in the hospital was would I be able to go to Duke in August. The answer was no, and I would be in a wheelchair for three months to boot. I burst into tears immediately, and then decided that “no” simply was not an option for me. I was going no matter what, and continued to make housing arrangements and register for classes from the hospital.

            Come August I was blessed to finally be pain-free and independent enough that school actually was an option after all, but the catch was that I would still have to spend the first three and a half weeks of my freshman year in a wheelchair. Though I decided to continue with my plan to go to Duke, I was nervous about it for several reasons. I did not want people to see me as disabled. I did not want people to mistakenly think that I was permanently disabled. I was afraid that I would not be able to participate in social life and O-Week fully with my friends, and I was positive that guys would not give me a second glance.

            On the first day of O-Week I moved into my large, accessible room with the help of my parents and roommate, a girl I had met through a friend at Blue Devil Days the previous spring. I also received a text message from a good friend of mine from high school who was a sophomore. He told me he wanted me to come to a party his fraternity was throwing that night and to bring friends. My immediate thought was that there was no way I could even get to the party. Nonetheless, I told my roommate and a few other girls I had met, and they decided that we would find a way to get me there.

            Duke’s campus is big and old, but the Disabilities Office has done a lot to make it accessible. The first treat we discovered that night was that the buses are, in fact, wheelchair-friendly (as much as they can be). They have a ramp and a place to secure a wheelchair. Because of this we were able to get me to West, the location of that night’s party. However, Duke is not perfect, and we discovered upon arriving at the fraternity’s section that there is not a wheelchair-accessible entrance. No problem. A very nice guy carried me in, and though I was on edge about being perceived differently, I found that people were shockingly normal around me.

            For the next three and a half weeks people carried me into parties (often up several flights of stairs) and sat on couches to talk to me. Coming to Duke I had essentially expected to miss out on the typical O-Week freshman experience, but in the end I didn’t. I was so surprised that people took my disability in stride without ever making me feel bad for being there. I was also surprised to find that guys really did not treat me differently. One time, in a moment of unusual boldness, I actually asked a guy wasn’t it weird to be interested in me because I couldn’t walk. He said, no, I seemed like a normal girl to him. That was an eye-opening moment for me. I also first got to know my current boyfriend right when I got out of the wheelchair and was still limping and walking with a cane. Clearly it didn’t bother him too much since he stuck around.

            I discovered that I myself, as a disabled person, had harbored a stigma against disabled people. I didn’t think people saw the disabled as potential friends and love-interests in the same way as able-bodied people. I have since come to realize that I underestimated my peers, and that they saw me for who I really was more than I expected. I will be forever thankful for that because it gave me the emotional strength to get through that time and enjoy Duke the way I had always hoped to.

- Audrey Keller

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Goin’ My Way-Edens

DDA is proud to announce the next installment of the Goin’ My Way video campaign, this time highlighting the accessible vs. inaccessible pathways to Edens Quad. We gave flip cams to two students and asked them to go to the same dorm– one following the accessible route. The accessible route is not only twice as long, it’s also counterintuitive and unmarked. Students with physical disabilities deserve better.

Special thanks to Lawrence Evalyn for his fantastic work on this series!

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Words Matter

In the disability community there is a preconceivedImage view of how we live our lives.  People automatically assume that, because of our disability, we are helpless and we are in need of constant assistance with everyday tasks.  Yes, we may need assistance with some things, but this doesn’t mean we cannot live independently.  We still have goals and dreams for our future just like everyone else.

After I graduated college, I wanted to get my own apartment.  Most of my family thought it was just a phase and that I would eventually give up because I would learn that I was incapable of doing everyday tasks on my own.  This pushed me to be persistent and prove them wrong.  I started out looking for apartments online and picked out several places I wanted to look at in person.  The first time I set out into the world I took my mom and grandpa, but the over-protective factor came through.  So, the next time I set out on the hunt I went alone with my list of questions.  I had quickly figured out that there were certain amenities and accommodations that I would need such as in unit laundry, different door handles and faucet levers.

I knew instantly when I found the right apartment complex for me, because they had all the amenities and they were willing to make the accommodations without a doctors’ note.  I was living with my grandparents, at the time, and when I told them the news they weren’t happy, asking me questions like “How are you going to do laundry, cook, clean or go grocery shopping on your own?”  and “Is the complex secure, what if something happens to you?”  Yes, I was worried about all of these things, but I knew I was bound to figure them out quickly.  I called my mom to tell her and she was beyond excited for me.  My first night in my apartment alone I freaked out and called her crying and she said “This is what you wanted, to be independent after you graduated, and you were determined. I know you can do this, you will be fine.”

At that moment, that was the encouragement and support that I needed to hear.  It reminded me that this is exactly what I wanted and she believed that once I settled in to my own place that I would be happy with the decision.  It empowered me to believe in myself. 

It took one person to provide me with encouragement and support in that moment of fear and here I am eight months later still living independently.  Before, when I lived with my grandparents, my grandma would enable me from becoming independent.  She would do everything for me from cooking to laundry to shopping for groceries.  They questioned me on how I would do these tasks on my own and I was unsure at the time, but when no one is around to help, you figure things out.  Now that I have my own place I still work hard to prove to her that I’m not helpless and I can do these daily tasks independently.

But not everyone with a disability gets enough encouragement to supersede all the negative statements.  As children grow up they become more aware of other peoples view of themselves and this can be internalized.  If it gets constantly repeated that you’re incapable of becoming independent, it can cause your thought processes to change, and then those dreams and goals disappear.  They question “Why should I try to overcome this obstacle if no one is going to believe in me?”

In the disability community we fight harder to prove to everyone that we are capable of being independent.  We develop a drive to establish that others preconceived limited expectations of us are wrong.  It takes one person to believe that we can make a difference in our society.  Will you be that person?

- Rachael Wrobel

 

**Rachael Wrobel is 23 years old and lives with Epidermolysis Bullosa. She graduated from the University of Michigan with a Bachelor’s in Children and Family Services.  She has mentored teenagers with special needs to transitioning into driving, starting college and independent living.  She is currently focusing on volunteering at Children’s Hospital of Michigan while taking a class to pursue a career as a Child Life Specialist.

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Goin My Way: East Duke

We gave students flip cams while going to class and had them record their way going in both the accessible and inaccessible routes. This is a way to give students a tour of campus through the eyes of people who rely on the accessible routes an entrances everyday.

If this video sparks your interest to get more involved, come to our next general body meeting Thursday, March 28th at 7pm in McClendon media room 2 to vote for new officers. Better yet, apply for an exec board position by next Wednesday! Link to the app here: http://dukedpn.qualtrics.com/SE/?SID=SV_0koRYwt9cGnKIpn

Special thanks to Lawrence Evalyn for editing the video and doing such a fantastic job!

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The Givens

What I miss about home is the givens.Image

There are some types of personal knowledge that can only be achieved through experience – by being there. Givens are these things – the common knowledge, the unspoken understandings, the ideas and concepts that are just given amongst the people who knew you when you were younger. Although the residential aspect of college can create fast and lasting friendships, pre-college experience is not something that is always easily explained or demonstrated, even in four years together.

There are a lot of types of givens. For example, cultural differences and family dynamics are given to people from home, while to people at Duke they must be elucidated, and will likely never be understood as well by those who have not seen them in action. For me, I think the given I miss the most is the given of disability.

In the middle of high school, I was in a very serious accident that left me unable to walk for almost two years. After a good amount of time, I was “fixed”, only to discover that a surgeon had made an error, and I had spent about four months walking (if my hobble could have been characterized as a walk) with a bone grating away at another bone in my leg. The damage that was done required four additional surgical procedures, the most recent of which was last fall – about four years after the initial accident.

I want to be clear: I am incredibly fortunate. The damage that was done to my leg often requires full-bone replacements, but I got out of it with only a few minor roboparts that have since been removed. It’s hard to admit, but I’ll probably never be up to the same level of physical functioning as I was before the accident. But I am able to walk in a way that my physical therapist describes as “definitely not normal but no one else would notice, I only do because I’m a physical therapist.” Although I am surely not the same person as I was before I was injured, any notable psychological consequences of my injury have subsided. My self-esteem is back, and might even be better than it was before my injury. The brief moment of panic I got before moving anywhere – created out of the difficulties maneuvering and carrying things while on crutches – has almost completely disappeared. I am a happy, healthy human, and would not put “disabled” or “physically impaired” anywhere on a description of myself.

Still, my injury affects me daily. It causes me daily pain – sometimes a little, sometimes a lot. Walking uphill, up or down stairs, on uneven ground (hello, Central Campus) are particularly difficult for me. I can’t run, jump (well, more specifically, I can’t LAND), stand for long periods of time, or do most exercises. I am constantly aware of the way that I walk, the way my leg feels, and of potential ways I could injure myself. Simple things like deciding how to get to different locations on campus, going to a basketball game, wearing heels at night, or dancing at Shooters all require a rapid cost-benefit analysis. I have to ask myself: Will I get injured? Will this be worth how my leg will feel tomorrow? Will I be able to do this? How embarrassing will it be if I can’t do this?

There are plenty of people at Duke who know about my leg issues. But not having been there for the worst of it seems to translate to a different interpretation of what my injury means to me. I don’t want to be pitied, because there’s nothing to pity. My disability is as minor as they come. I am unaffected by Duke’s incredible inaccessibility, and my daily life is indistinguishable from any other Duke student’s. I don’t want any extra attention for my physical problems – in fact, the exact opposite, which is why I decided to write this piece.

In my hometown, it is a given that I have leg issues, and when they make themselves apparent, whether in the form of a weird stride or an event I can’t participate in, it isn’t a big deal. Because everyone from home was there during my recovery, it’s simply a given. No one treats me any differently because of it. At Duke, people find it necessary to point out, criticize, and all too often make fun of my leg issues. Because it’s new to them or unexpected, because I’m not THAT disabled, or maybe because they didn’t see me when I was casted and braced and wheelchair-bound, they find it their right to probe the details of my disability and chuckle at the funny by-products.

I’m willing to share my story with anyone. But just knowing about it doesn’t give the context. It doesn’t convey how those two years were some of the hardest of my life. Knowing doesn’t seem to convey that I’m not okay with people cracking a joke at my biggest insecurity. Although my injury hasn’t been a huge problem for me at Duke (again, I am very privileged), when the issue does arise, I find myself missing the things that everyone at home just knows and holds to be true without me having to explain. I find myself missing the givens.

– Lillie Reed

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Choices

ImageHave you ever chosen an outfit or Facebook photo because it hides the body part that you think is just not-quite-right? You are not alone; I’ve totally done that.

I’m a little ashamed to admit it, but I’ve also gotten really good at hiding something else that isn’t quite normal about me–the fact that I have an invisible disability. For example, if a classmate notices that I get all of my work done ahead of time, it’s easier for me to make a self-deprecating joke about being obsessive than to explain that what appears to be consciousness actually the fact that I’m perpetually terrified that I will become too sick to finish my work or will have to go back to the hospital without being able to turn in my assignments. When I decline an offer to go to a party or late-night Cookout run, I don’t correct the people that think I’m no fun because that would result in explaining that if I stay up too late, my body will be chronic pain. It’s easier just memorize the times and locations of the final exams so that when a classmate casually asks for that information, I can give it to them rather than explain that, because of my disability, I will be taking the test at a secluded testing site at a slightly different time than everyone else. I convinced myself that I did all of these things because I didn’t want to burden other people with my problems, but a couple of weeks ago, I finally admitted to myself that I was pretending that I didn’t have a disability.

Every time I admitted that I had a disability, shame and frustration from having a disability would wash over and completely overwhelm me. I felt weak because I couldn’t pull crazy college-student hours or eat college food. I felt like a failure because I had to take a leave of absence from school and now it will take me five and a half years to graduate. I have experienced the enormous frustration of student health and university deans refusing to acknowledge that my case was mishandled by the university because they are too worried about liability. I have felt shame bubble up from the memories of the brutally uncomfortable discussions which each of my professors about disability accommodations I will need throughout the semester. (To their credit, the teachers here have always been amazing about my accommodations. In fact, after assuring me that any accommodations that I needed would be taken care of, one professor admitted to me that he too has an “invisible disability.”)

Then I realized that even if we can’t choose what has happened to us (like how I got sick), we can choose how we respond. What motivates me to tell my story is so that the denial, the mismanagement, the hurt, the isolation that I have experienced doesn’t happen to anyone else. I would love to tell you that I don’t care what anyone thinks, that I’m totally comfortable with myself and not afraid that this post will ever come back to bite me in the butt. But that’s not what being brave is all about. It is said that, “Courage is not the absence of fear, but rather the judgment that something else is more important than fear” (why yes, I did just quote “The Princess Diaries” in my blog post). I feel that being able to talk openly and unabashedly about disability and diminishing the stigma around having a disability is more important than the fear of the negative consequences from what I’m writing.

My name is Lauren Elizabeth Blake. I grew up in the town where the Boston Marathon starts and love cheering for Boston sports. I have two sisters and a dog who gets very upset when you treat her like a dog. I am passionate about my research in population genetics and totally wish I had discovered my love of biostatistics early enough in my college career to be a stats major. I’d love to sit and talk to you about travel, trivia, college basketball or anything else that regular people talk about. But I can also talk to you about surviving at a top school with a chronic illness or sit with you at the ER at 3am because you’re in chronic pain. Mostly, I want to say that you are not alone.

We may not always be able to choose what happens to us, but we can choose how we respond. I encourage you to share this blog post and invite you to tell your story–on this blog, with campus leaders and administrators, or even with a friend. Because even if our disabilities are invisible, our stories should not be.

– Lauren Blake

The Duke Disability Alliance Blog is now accepting anonymous posts. If you would like to submit a post to the blog, please email it to dukedisabilityalliance@gmail.com with the subject name “Blog Post”. From there, members of the board will read and post them to the blog under the term “Anonymous Post”. If you wish to remain completely anonymous even to the DDA board, you can send the email to dukedisabilityalliance@gmail.com from this anonymous submission address we have set up specifically for anonymous blog posting:

 Anon Email

Thank you for you contribution.

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Accessibility and Why It Matters

I’m going to be honest with you. ImageIt took me forever to start this post. I put it off and put it off, not just because I did not know what to say, but how to say it, and where to start. The campus-wide dialogue on disability related issues has yet to happen, so where do you get the guts to be the first one to say something out loud?

I meant to write this a year ago, and figured I had plenty of time, that other issues in my life mattered more at the moment. Well, here I am, a second semester senior and I’ve still kept my mouth shut. I’m going to admit to you right now it is really damn scary to confront issues of my own disability in an open forum, when I, like many of my Duke peers, have spent a bulk of my time trying to fit in. The thing is, having a visible physical disability means you can’t blend in to a crowd, no matter how much you’ve tricked yourself into thinking you can. It also turns out that being disabled runs smack-counter to the “effortless perfection” Duke persona that many of us try so hard to maintain. It’s your physical body, the most basic element of how you construct your identity, and society says by normative standards it’s broken in some way. It generates a stigma that is almost impossible to escape, so avoiding the whole “I’m disabled” thing, for me, was the best shot I thought I had at having a “normal” Duke experience and fitting in. But avoidance, I learned, wasn’t going to help me, or the disability community here anywhere anytime fast.

So here it goes: Hi, I am Megan Barron, and I am a disabled Duke Student. With the help of my friends, I started Duke Disability Alliance with the hope that the disabled community would have a voice and place at the table among all the other social activists’ voices on campus, and disabled students would have a safe space to talk about issues they’ve encountered while being a student with a disability here at Duke. For far too long, the disability community as a group had been left out or passed over in the overarching dialogue about campus life. DDA has been at it two and a half years now, and we are still fledgling, because it seems the disability community here at Duke was virtually nonexistent and creating something out of nothing is a lot harder than I anticipated.

We focused on Accessibility issues on campus to open the eyes of able-bodied students, as well as the Administration, to the extra challenges mobility-impaired students face just existing and navigating on and around campus, let alone managing classes and a social life. Our “Accessibility Matters” campaign generated some buzz and got people thinking but in the end, why does it matter?

It matters because as a student with a disability, I’ve come to realize that my physical isolation did not need to be blithely accepted as “just the way things are”. It matters because those who need to use the accessible entrances shouldn’t have to be made to feel like second class students because their entrances to the buildings are in obscure, out-the-way-locations, and ‘round the back or covered up by landscaping, as if they were a threat or an eyesore to the Gothic Wonderland look. Accessibility matters because the ADA van service should also run on the weekends. Accessibility matters because students who have special housing needs should never be told they cannot block with their friends. It matter because anyone, no matter the housing need, should be able to rush any house or Greek they want to without the fear of not being accommodated. It matters because it is unacceptable that whole buildings dedicated to whole departments are completely inaccessible, and Duke has no plans to change the situation. (See: Languages Building). It matters because neither the Mary Lou Williams Center, the Women’s Center, nor the LGBT Center are accessible, virtually eliminating any possibility for a student with mobility impairments to foster an intersectional identity. It matters because the Student Disability Access Office shouldn’t be tucked away by the police station, in such an obscure spot that it’s not even on a bus route, reinforcing the out-of-sight, out-of-mind feeling that we as a group face repeatedly. It matters because equality matters.

The Mary Lou and LGBT center will be fixed along with the West Union renovation, because an overhaul that big means Duke will have to make any remodel up to full ADA standards, but these spaces should have been addressed long ago. We need to get Duke to take on making campus accessible for it’s own sake, not as a side note to bigger, glitzier project ideas. Duke has a chance for real self-improvement here, as one of the nation’s finest institutions, to become an even finer one. Shifting the focus toward making ADA issues and campus accessibility a top priority in the Administration would say to the public that when Duke is dedicated to making sure all students have access to the Duke experience, they mean business. It’s that kind of attitude of commitment toward betterment for everyone, no matter how small of a group they may be, that I think we’d all like to see out of Dear Old Duke.

Building structures aside, there is that even more pressing matter of stigma that needs our immediate attention. It is easy to see that as a group we have been ignored for the sheer fact that we are, and have historically been, so small. I can count on one hand how many people I’ve known here at Duke in my three and a half years who have a visible disability. But it turns out we are not as small of a constituency as one may think. In setting up DDA, I asked the Disabilities Office just how many of us were there. For privacy reasons, they wouldn’t give an exact number, but they did say several hundred.

Several hundred?

It blew me a way that this group could be that large. The SDAO also admitted that part of the logic behind their obscure location was that they needed to be in an area where people would feel safe enough to come and register for accommodations without being seen. Their explanation made perfect sense, and it also broke my heart.

If DDA does nothing more but chip away at that stigma, than my board and I have done our jobs. But as I said before, we are still fledgling. We need help. We need dedicated members and we need underclassmen to pass the baton to. Many people after the poster campaign expressed support for the cause, but merely expressing support won’t be enough to effect real change on this front. I urge you, if you care about expanding the definition of “everyone” on this campus, if you care about inclusivity, come to our next meeting. Bring a friend, bring two. We plan to meet every other Wednesday of the month, but keep an eye out for details.

So, with all the courage I can muster, I’ll say it again. Hi. I am Megan Barron and I am a disabled Duke student. This is why accessibility matters.

– Megan Barron

Note: Disability is a very broad term that refers to a highly diverse group. No two disabilities are alike, and my piece is meant to reflect my own personal experiences with my unique health condition, not speak on behalf of all disability experiences on campus. If you think you qualify for accommodations but don’t know where to start, contact to Student Disabilities Access Office to register.

http://www.access.duke.edu/students/staff.php

402 Oregon Street, Suite 102
Box 90142
Durham, NC 27708
(919) 668-1267
(919) 668-1329 TTY
(919) 668-3977 Fax
sdao@duke.edu

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