Is it Really Worth A Thousand Words?

~ By Lauren Sibley ’17

“A picture is worth a thousand words.” As hackneyed as it is, there is a lot to be taken away from this cliché. Ironically, in terms of individuals with disabilities, a picture can often be limiting rather than liberating. That is, a photograph of a disabled individual can define them as a singular thing rather than add depth to their character and complexity to their story. Take this picture for example (taken from www.tass.gov.uk):

I would wager that the gut reaction of the Average Joe upon seeing this picture would be something along the lines of: “Wow, that sucks that he has to play basketball in a wheelchair. It’s so great that he has found a way to overcome his disability though. What an inspiration.” An image of a person in a wheelchair has the power to boil down the subject’s entire narrative to a combination of pity and inspiration. But, “a picture is worth a thousand words.” So how can we restore photographs’ ability to liberate someone’s narrative rather than simplify it?

This photo from the popular Facebook page “Humans of New York” does a spectacular job at just this.

It is paired with this powerful caption : “I want to make life easier for people in China who have disabilities. I know what it’s like, because I lived in a Chinese orphanage until the age of ten, and I wasn’t able to go to school because I couldn’t walk. But that’s just a small part of who I am. I want to be a diplomat, and travel, and do all sorts of things that have nothing to do with being disabled. I don’t want people to pity me. I don’t want to be another ‘poor her.’ I don’t want to inspire people. ‘Inspiration’ is a word that disabled people hear a lot. And it’s a positive word to you. But to us, it’s patronizing. I’m not living a wonderful life for a disabled person. I’m living a wonderful life, period. This morning I got accepted into the London School of Economics. Now hold on, let me put on some lip gloss before you take the photo.”

Something that both this photo and caption do is portray disabled individuals as just that: individuals. Why do we feel the need to take photographs of disabled individuals that portray the extremes? Why must someone with a disability be either patronized and pitied or idolized? Yes, it is remarkable the challenges that disabled individuals overcome and it should be celebrated. However, let’s not forget that sometimes it’s okay to for someone to just be an individual and not a symbol for something larger than themselves.

I’d like to conclude with this photo series. It is a perfect example of photos that liberate the narratives of disabled individuals. Candid, honest, beautiful.

http://www.refinery29.com/corporeality-disability-portrait?utm_source=huffingtonpost.com&utm_medium=referral&utm_campaign=pubexchange_facebook#slide-24

P.S. What about those who have “invisible disabilities”? I suggest you read this great NPR article. It explains and discusses invisible disabilities more eloquently than I ever could.

http://www.npr.org/2015/03/08/391517412/people-with-invisible-disabilities-fight-for-understanding?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20150308

Don’t Be Defined by Your Disability

~ by Calvin Lau  Class of ’17

This past summer, I had the opportunity to serve as a volunteer camp staffer for the Muscular Dystrophy Association’s annual summer camp. For a week, I took care of one camper, who I’ll call Sam (age 11), 24 hours a day, feeding, clothing and bathing him in addition to assisting the nurses with his medical treatments. In the first few days, Sam was a challenge. Having a spinal condition that was much more severe than most, he felt like he didn’t fit in with the other campers and mostly kept to himself. On top of that, he didn’t trust me as his caretaker. But to be honest, who could blame him? He was used to having his parents and in-home nurse tend to his needs, I couldn’t even begin to imagine what its like to put all of your weight, essentially your life, into an unfamiliar 18 year old’s hands.

Slowly but surely, Sam and I started to get along. Because I spent so much time with Sam, we grew quite close and I really think that in that one week, we each contributed so much to each other’s life. Sam taught me that, at the core, kids with muscular dystrophy diseases were still just kids that played together, sang songs together, poked fun of each other and were mischievous together. Sam really taught me that no one is defined by their body, but rather their outlook on life.

When I think back and reminisce on my times at camp, I don’t have a physical picture of everyone I met or shared experiences with. Instead, I remember the feelings and emotions that these people shared with me and the knowledge they imparted on me. And as for Sam, he ended up becoming a favorite among his friends and the whole camp. He even asked a cute camp counselor to the end-of-camp dance.

You’ve Got a Friend in Me

~ by Ankita Das

As a camp counselor at Camp Aldersgate, a summer program for children ranging from ages 5-18 who have various medical conditions, illnesses, or disabilities, I was able to watch several children grow over the years. Each year, we canoed, ziplined, swam, scuba dived, hiked, and sang cheesy camp songs—everything that defines a classic summer camp experience. And as I got to know these children better every year, I watched as they grew more independent and confident every year and as their week at camp progressed, demonstrating their true potentials and showcasing their bright personalities. The open environment free of stigma and full of opportunities to focus on fun, allowing the children to experience new things like archery and karaoke without being judged. The younger children were in paradise with all of the games and activities and dancing and singing. One year, I was assigned to a cabin for the 16-18 year old girls. As a 16-year old volunteer counselor of the same age, at first, I was confused as to why the girls were a little standoffish and avoided participating in the games and camp-wide activities. As the weeks passed, the girls’ barriers came down and communication began. The girls admitted that their hesitation stemmed from the awkwardness they felt about the fact that the volunteer counselors assigned to help them were their same age if not younger. As counselors who had been trained to help in any way we can, we had to take a step back and understand their point of view, and for the rest of the weeks, we focused on building friendships with these girls and stepping back from our counselor position as recognition of their independence. And now three years later, my camper has become one of my closest friends, my pen pal turned Facebook friend turned best friend— one I confide to about everything. What I hope to achieve through raising disability awareness is for, starting from the Duke community, everyone to understand and respect that a disability does not define a person. It is so easy to classify someone as “oh that girl in the wheelchair” or “that girl with the cane”.  But it is unfair and a disservice to all to allow stigmas, convenience, and lack of exposure to restrict our perception of the personalities, other abilities, intelligence, wit, and beauty of those with disabilities. I hope that in a community of such forward-thinking, active, open-minded individuals, Duke can effectively set the standard for successful integration of the two communities and create a system of support and acceptance for all.

Society’s Role on Disability

~ by Ashley Brien Class of ’16

I decided to join DDA this spring as a Junior here at Duke studying Public Policy and Media/Journalism. My experiences with disability related adversity were gradual and the notion that my emotional instability satisfied the requirements of a disability took a long time to actually believe. I didn’t think less of myself as a person, but all of the illusive hypotheticals and reasons for my situation fogged my perception of and ability to relate with peers. It’s not that I had an ill-­conceived notion of what it means to be disabled.

I actually would like to think I’ve always been relatively aware of the cultural and social inadequacies that physically or mentally impaired individuals faced on a daily basis. But, gaining awareness through empathetic understanding is not nearly the same as becoming aware that your capabilities in society are marginalized. Resisting marginalized status and overcoming the institutional failures across our country that treat equal

access like a privilege is a battle I’ve taken on both for myself and for those in any stage of this journey.

I’ve come to adamantly believe that eliminating discriminatory boundaries and practices can be just as subjective as ensuring individuals are provided the necessary resources to optimize productivity (not to mention livelihood). The fact that a university, hospital, profession, health insurance policy, etc. isn’t obliged to actively equalize the playing field for fellow Americans, which emphasizes the ineffective structure of administrative decision making, given the absence of concern that the benefits aid in supplying cultural blinders that perpetuate discriminatory rationale.

There are some spheres within American society that eagerly address certain discrepancies with access and are clearly identifiable “on the books.” However, ensuring and maintaining ongoing accommodations for the disabled groups within a population is seldom considered to be a priority. I don’t necessarily know the reasons for imbalance of efforts in place

to protect against discrimination of opportunity without really doing much to make sure these measures work in practice not just in theory. There’s not always a visible, Herculean struggle to point to or remedy, but I think it’s important for the viability of the general cause not to suggest that any embodiment of disability is more difficult than another because it lies in one of the blind­spots within our society’s legal culture.

Perhaps it would be naive to expect the pace of social and political change would be any slower than the personal journey

of identifying, accepting and coping with a lifelong impairment. But, when I gradually face increasing difficulty that can’t be cured or willed out of me, where do I place the line between health/happiness and achievement or success? How can I weigh the trade-offs associated with prioritizing my collegiate academic performance above all else when this lifestyle all too often prompts an abandonment of any concern for health, well-being,

and happiness? Or better question, are these trade-offs and sacrifices out of the hands of the affected party in the same

way that impaired persons have no say or power over the scope of the disability?

The intermingling of all these unknowns in addressing the problems and actively seeking appropriate solutions are lofty tasks given there’s no clear definition or framework for what society’s role (or duty) should be in all these matters. Waiting to fix individual complaints that gain enough traction will

never dispel the underlying biases that enable, and often hide, politically motivated inaction.

“The healthy and strong individual is the one who asks for help when he needs it. Whether he’s got an abscess on his knee or in his soul.” – Rona Barrett

I think the quote above really hones in on the importance
of having a personal sense of strength and direction regardless
of what one must face along the way. Just because certain people
behave a specific way in similar circumstances, it should not
bear any weight in determining what is best/worst or right/wrong
for someone handed a different set of “ability cards.” In many
ways, I think my own experience with a mental disability and
confronting the challenges that such a diagnosis inevitably
prompts has made me tremendously more able in emotional/mental understanding than I would’ve been if never put in the difficult position of asking myself the hard questions and not avoiding the answers if they invoke discomfort. Lastly, a quote like this may be misconstrued into a belief that disabled individuals seek praise or congratulations for overcoming social marginalization on top of having some quality that inevitably increases the difficulty of achieving any success regardless any assistance in place.

Duke Student Broadcasting: Disabled Access

Hello Duke Students!

Check out Duke Student Broadcasting’s latest video! This video specifically talks about one of our members, Paul Shaver, and what he has to go through to get around campus. This video clearly shows how we need to address these accessibility issues. It also mentions that DDA is the only student-run organization that focuses on these disability issues, and how certain events on campus do not allow fair access to those in wheelchairs because these events and parties are held in old campus doors with no accessible ramp. And because of that, students with disabilities get left out.

Please feel free to leave comments or to ask any questions regarding disability issues or how you can help out.

Best,

Cuquis Robledo

Class of 2017

President of DDA

Documenting disABILITY

~ by Okechi Boms ’16

Disabilities are often viewed as limitations and sometimes have a stigma attached to them. Debunking these preconceptions calls for better awareness and sensitivity within and larger than the Duke community. Over the past semester, I conducted a photo-documentary project to record the experience of disability on Duke’s campus. My intent was to highlight the different experiences and perceptions of people with disabilities; the participants ranged from students to administrators. I titled the project: Documenting disABILITY.

I believe that there is a strong relationship between both the body and mind, in which one can drastically affect the well being of the other. My interest in documenting disabilities on campus stemmed from my curiosity about the resilience of the human body and mind. I wanted to create a project that transcended just completing the basic requirements for my course, for my class Documentary Studies 206: Medicine and Documentary Photography. I wanted to highlight stories from people who have gone through their own unique experiences. Also, I envisioned a project that would have the potential to benefit the community of people that would be documented. After speaking with correspondents from the Duke Disability Alliance (DDA), they were thrilled at the prospect of using the photographs for future projects.

The general structure of the project involved conducting a number of interviews and photography sessions. In addition, I interviewed students and administrators at the Student Disability Access Office (SDAO), attended the national disability conference at Duke, Beyond Disability, Beyond Compliance, and events hosted by DDA. After conducting the interviews, these are some of the lessons that really impacted me:

• “You define yourself by what you do, and the impact you make, not on the physical appearances.” – Paul Shaver, Duke University 2017.
• “Live life big and to the fullest… Life is not about waiting for the storm to pass, but dancing in the rain. My journey has had a lot of storms and obstacles but I never let that get to me.” – Cuquis Robledo, Duke University 2017.
• “The definitions that other people place on those with disabilities are oftentimes, not what they place on themselves. When people come to terms with having a disability, that’s when it stops defining you.” – Cori Hayes, Duke University 2016.
• “I try to strike a balance between, on the one hand, embracing disability and recognizing its positive contours, and on the other, fully recognizing that it’s only one small part of who I am … I feel like I can more effectively empathize with marginalized communities because of my disability. I’m a firm believer that you really need to experience and understand otherness and hardship to be a better listener, and a better thinker.” – Jay Ruckelshaus, Duke University Class of 2016.

Over the course of my project, I have become more sensitive to ways in which Duke’s campus or culture might not be inclusive for people with disabilities. The administration is working hard to create a more accessible campus; these steps will work to improve the physical space. But in order to build a better community, we need to foster conversations that address a population of the campus that is sometimes forgotten. These voices and opinions are relevant and important for creating a more diverse and enriching environment.

I took this class to better understand the power that images have in portraying stories; I can confidently say that this goal has been met. This is an experience that I will not take for granted because it has opened to me a new realm of self-expression and artistry. More importantly, I have been fortunate to meet interesting, thoughtful people who have taught me the importance of relying on a strong support system, positivity, and strength.

{the collection of pictures will be displayed later}

Please, watch where you’re going!

– by Cuquis Robledo

We all know what happened at the Duke vs UNC football game on Thursday. We know that Duke lost, but it was also the first time in a while that Wallace Wade Stadium was packed and overcrowded to the point that people were being turned away.

Everyone has been talking about the big mosh-pit at the very beginning when people were entering in through the gates. The Duke Chronicle has reported on injuries that occurred from this chaos, but I thought it might be important to tell the story from my perspective.

Those of you who know me know that I am a Little Person and use a red motorized scooter to get around on campus. Like everyone on campus, I was excited to go to this football game since it was the last game of the season and I hadn’t been to any games this season. My friends and I arrived at the entrance to the stadium between 7-7:30 PM, and we could already see that the two “lines” to get to the get were merging into a large mass and pile. With one friend next to me and two friends in front to clear a path we slowly tried to get to make our way to the gate.

Now, driving a scooter is kind of like driving a car (but without the lights and rear view mirrors). Not only do I have to watch where I’m going, I have to make sure I don’t run into anyone. And being only 3 ft. 4.5 inches on a scooter, all I could really see was a wall/sea of black, navy and blue. In other words, it was very difficult to see where I was going.

As the gate was near in sight, there was an opening for my scooter to go in. As I was about to make that straight shot into the open space, two guys who were drunk sharply cut in front of me, almost running into mean. On top of that, they were so drunk they started leaning back and were almost going to go on top of me and push me off. Luckily, a few people who were waiting on the side tried to make the attempt to get them to move or at least watch where they were going, but I don’t think there was much luck on that.

One thing I realized too is at the gate, there is HARDLY enough room for my scooter to get in. It kept bumping on the sides because it was so narrow. I they would at least have a gate wide enough for all people with wheelchairs are scooters to get in. My friends had to shove the whole scooter in at the end.

I was able to get in eventually, but finding a seat is difficult. I am limited in terms of seating. There is either the handicapped section which is all the way at the top, but where all the street people are and away from the whole student section, or try to stand and join the student section.

While in the handicapped seating area I am able to see more, it makes me feel isolated from where all of the other students are and enjoying the whole Duke Experience. So I decided to try the student section. But of course, it was packed and finding seats where I can see was pretty much, impossible. I understand that everyone else had that trouble, but for me it is difficult because at least when everyone stands, they are able to view some patches of the field from over people’s head. I for one, was completely blocked. In addition, there was more of the pushing and shoving, and because I am so short, I am more susceptible to falling.

I know you might be thinking that, “Well, everyone has fallen at some point during the game.” But for me, falling is very crucial. And let me tell you why…

I developed scoliosis in the spine when I was about 8 years old, and when I was 11, the curve developed into a 100 degree curve. As a result, I have a metal rod down the left side of my spine, and falling down is a risk for the metal rod because there is a possibility the rod can disconnect from the spine. Also, I had leg surgery back in 2012 to lengthen my legs, and because of the surgery, I now have two metal rods in my femurs and metal screws in my knees and ankles. There is a possibility if I fall, one of these screws can shift around causing me severe pain. And lastly, because I am so small, people are likely going to forget if I am there…so if I fall, there is the fear that people will stampede on me and hurt me.

Despite these issues at the game, I did enjoy myself with my friends! I am lucky to have great friends who will stay by me and make sure that I am safe in any way. And by the 4th quarter, my friends and I were able to get front row seats since over half of the people came left by the second half. So it all worked out in the end.

The main reason I am writing this blog is to ask you to please be careful and watch where you’re going.  It is not only at big games like these that I have trouble getting around, but around campus as well. I’ll be at the bus stop and people try to swarm onto the bus to try to be the first one on, blocking my path and anyway for me to get on the bus. At other times, I’ll be watching where I’m going but someone might suddenly almost run into me because they are texting while they are walking.

I am also telling you this to protect YOUR safety as well. I may have been driving my scooter since I was 10 years old, but I make mistakes too from time to time. But I am aware of where I’m going and try to make sure I don’t run into anyone. That is the last thing I want is for me to run over someone’s foot because they were not watching where they were going.

So please, do me a favor. I’ll do my part and make sure to watch where I’m going. Now can you please do the same and watch where you’re going too?

 

Bikes, Wheelchairs, & Motorized Scooters: What do they have in common?

– by Anonymous

As a sophomore in the Duke community, I have come to embrace the reality that I am now a member of the distinctive Duke family. This will be my reality for the rest of my life, but within this lies a choice: to either realize the great opportunity I have to concern myself with the different matters individuals from this community bring to the table and to engage these matters from a position of gentleness and understanding or to simply passively identify as a Duke affiliate. I personally have found that there is great joy in seeking to understand the journey that each person is on and how this has shaped their perspective because I feel that in the process of listening to others with the intent of sincerely understanding, a person gains the capacity to be more considerate to everyone. All too often in both our own society and those around the world, damaging generalizations are constructed and perpetuated about individuals of any given group that cloud our ability to see those individuals who have placed their identity in these groups as individual people with unique identities. In my opinion, actions to counteract this habitual oversimplification of human identity in the Duke community would entail each person making the active choice to both consider matters that members our community face as our own personal matters. This concept of solidarity is powerful and I feel is something that we can reasonably strive for in the culture of Duke.

This summer while I was on campus for the first time with a bicycle, I had a unique experience that I found to be enlightening. Relying on my bike to get across the different campuses truly opened my eyes to how the seemingly minor ways that I had to adjust to the campus collectively amounted to a fairly major lifestyle modification. Whether this was not being able to ride the bus, having to take alternate routes that had ramps, having to pick up my bike if I happened to be walking with another person where there was no ramp, or adjusting the way that I walked with people to account for the object between me and the person I was walking with that served as a social barrier. This experience really transformed my outlook on the many facets of daily activity that would be changed if an individual had to actively seek an alternate path to get around campus as this likely wouldn’t align with the conventional path. Although in this experience there is an obvious divide between my experience and the experience of an individual who is physically impaired, from now on it is on my mind and heart that every point where I have to pick up my bike, an individual from this community would not be able to and would have to find their own way.

From this personal realization came this notion of solidarity and aspiring to personally identify with the matters of others in this community and collectively working towards realistic and ethical solutions. As a concerned student I avidly support the Duke Disability Alliance as the mission of this student group is empowering and enlightening for the student body as a whole and is a student organization that is focused on improving the accessibility issues present on our campus.

Looking Back

– By Audrey Keller

When I broke my pelvis in June 2012 and was told I would have to spend three months in a wheelchair, including my first month of college, it sounded like forever. As I counted down the days until I could walk again, time seemed to be trickling by painfully slowly. All the while, though, I kept telling myself that in no time at all it would seem like the distant past. Two years later, that experience is well in my past, yet I don’t feel the need to suppress memories of that time as much as I thought I would.

I can’t say I enjoyed being disabled. I didn’t, but it wasn’t all bad. As I wrote about in my first blog post for the Duke Disability Alliance, I actually made a lot of friends in those first weeks of college, and people were incredibly accommodating. I actually think I met more people than I would have otherwise, because since I stood out so much, I was almost forced to be outgoing. Every once in a while, someone I’m talking to will say “Hey, aren’t you the girl that was in a wheelchair freshman year?” Two years ago, in the moment, I would have cringed at this question, but now I just smile and say yes. They don’t mean it in a bad way. I actually think most people who ask me this question remember it positively. Disability, I learned, doesn’t have to make someone lesser or remove them from society, and it doesn’t even have to be ignored or forgotten. Two years on, I am more accepting of having once been disabled than I was when I was disabled. Everyone likes a person who is self-confident, not a person who is embarrassed by themselves. This is a lesson that affects both how I carry myself today and how I perceive others living with disabilities.

(Left) Treasurer Audrey Keller & (Right) President Cuquis Robledo of DDA at the Activities Fair this year.

One-Way Ticket

By Karina Martinez-Romo

With all the construction that Duke is undergoing, most of us can’t help but complain about the long alternative routes getting to places, such as from Edens to the Bryan Center. I myself am guilty of doing this, but at the end of the day, I am not the one most affected by it. In fact, why should I or anyone else perfectly physically able feel the need to be accommodated? Those whose voices most matter in terms of accessibility are those with disabilities and it is our duty to spread cognizance about the daily issues they often endure and become instruments of change for this cause.

If you think the walk to the Bryan Center is long, think again. Try taking the route behind the chapel that is not only longer, but often secluded of people as well. Because of this, friends with disabilities frequently experience isolation from the rest of the student body. Additionally, with the winter season coming in, most of us choose the quickest and easiest path to Perkins- so we take the mulch path. The last thing you want is have to increase the time that you are in the cold, but for many of my friends they don’t have the luxury of option. The only path for them is yet again, often the longer and more isolated one. Sometimes, there isn’t even a path! Perhaps you are passionate about French or Italian. Next time you pass by the Languages building or are going in for a class, I want you to remember that for many on campus, they are deprived of the option of taking a course there due to the lack of accessibility.

              These are only a few of the experiences many of my friends must endure. I will admit that for me, rainy days are the worst. I don’t like walking in the rain long distances. It can be frustrating when the weather seems to be burdening you. But what about those with motorized scooters or wheel chairs? Sometimes the Duke Vans may not arrive on time and consequently you are late to class. It has happened before that the motorized scooter my friend uses has suddenly stopped functioning on her in this kind of weather. It is not that simple for her to walk back to her dorm carrying all of her books, laptop and other belongings. She physically needs the aid of others to do things like these that others do effortlessly. For that reason, she often has to plan her days, her class schedules, and the activities she goes to around accessibly.

Another thing I will say is that yes, we often take things for granted. It’s a part of human nature. However, one thing that I’ve learned through my time at Duke, and simply put: stop taking things for granted. Take a moment and realize that what you assume to be the truth is not the case for everybody. Be sensible about the situations of others, such as friends with disabilities. Put yourself in their shoes. By becoming aware of the issues they go through, you can then advocate for change. Their circumstances can be like one-way tickets in the sense that they are often forced to literally go only one way.