Leave a comment

Beyond the Wheelchair: Invisible Disabilities

Often, when thinking about disabilities, it seems that everyone has a similar image in their head. Maybe the image is one of a close friend or a family member, but they all share something in common. The person is generally in a wheelchair or a motorized scooter. Even the logo for someone disabled is a person in a wheelchair, and that’s Duke Disability Alliance’s logo as well.

While its great to talk about improving wheelchair access and accessibility on campus, today I want to focus on a broader spectrum of disabilities. Disabilities are not simply physical. Disabilities can range from mental to sensory to developmental to cognitive to any combination of those and more. Many fall under the category of “invisible disabilities”, or disabilities that impair every day life that aren’t readily apparent to an outside observer. To give you a more concrete idea, here are a few of some of the chronic medical conditions that are invisible disabilities:

  • Autism
  • Inflammable bowl disease
  • Partial/Full deafness or blindness
  • Epilepsy
  • Narcolepsy
  • Diabetes
  • Chronic Pain

Here’s a larger, though still incomplete list. All of these conditions can affect a person’s quality of life, and they’re relatively common. One source estimates that 10% of Americans have a medical condition that could be considered an invisible disability if disabling.

Despite how common these invisible disabilities are, there is still very little support for people with these invisible disabilities. A recent study from the University of Maryland showed that those with more visible disabilities received significantly more accommodation. In the same study, those with disabilities such as a heart condition or muscle weakness were accused of stealing disabled passes or stated that they felt that they had to continually prove they were disabled.

I personally believe one of the best ways to understand what those with invisible disabilities go through is by listening to their stories. Therefore, I’d like to share with you the story of Grace. The full story is published here.

“I recently met Grace, a woman who had a traumatic brain injury when she was sixteen years old. She was in a car accident, an all too common occurrence. An accident occurs, the head hits a part of the car and internal damage to the brain results, ranging from mild to severe. Grace shows no outside cues of brain damage. …

In the course of our conversation, Grace told me of the years of difficulty she has encountered attending school and college. … She has required a lot of assistance to organize and work with information. Grace’s brain was damaged in the car accident. Her ability to hold information was altered by the impact.

The biggest difficulty that Grace has faced is not the effort it takes to organize information, however. It has been in convincing people that she had a problem at all. People look at Grace and assume she is fine and then react to her difficulty as if she is being lazy or choosing to be obstinate. Teachers’ judgments of Grace have been based on assumptions made from Grace’s physical appearance. … It was frustrating enough to have to struggle with the school work. Imagine having to struggle with negative judgments at the same time.”

More stories can be found here.

It’s clear that the way we think of disabilities has to change. The term “disability” does not simply signify physical disabilities and cannot be summarized in the image of a wheelchair. Instead, we need a new way of thinking about disability. I encourage you to talk to your friends and others in the community. Whether visibly disabled, non-visibly disabled, or not disabled at all, listen to their stories with an open mind. Finally, I ask you to consider how we can make Duke more accessible, not just in terms of ramps, but in creating an accepting and understanding campus.

Leave a comment

Carry Your Peers

By Lauren Sibley

Who knew that you can do weight training not only at Wilson, but also on a routine walk to the BC? My friends and I discovered this one Friday night, as we were en route to the BC to grab a late-night Red Mango snack. Since one of my friends uses a motorized scooter, we typically take the circuitous accessible route around the back of the chapel. However, this time, we were determined to take the more direct route. The route with stairs. The two strongest of the group lifted my friend’s scooter (with her not on it!) and gingerly carried it down the stairs.

dda

Two of our friends trying to lift my friend’s motorized scooter up the back chapel steps.

This doesn’t seem like a spectacular story and I apologize for not prefacing it as such. But, it strikes a chord with me and says something important about how we approach accessibility issues on campus.

Even the simplest of requests, such as trimming the bushes framing Marketplace so that the accessible ramp is visible, get stuck in the web of bureaucracy.

dda2

Where is the accessible route to Marketplace?

Efforts to push for requests like this are by no means futile. To make monumental, systematic change, to “move mountains” if you will, it is necessary to talk with Duke’s administration about accessibility issues. However, working with an administration of any kind requires a lot of energy and does not guarantee a tangible result.

For this reason, we cannot remain complacent while we push for significant change on campus. We, the student body, have a responsibility to take our own action toward creating a more accessible campus: small action, immediate action, tangible results. This is the best way we can stay engaged with accessibility issues while the powers-that-be work to create gradual large-scale change. We cannot ignore moving pebbles when trying to move mountains.

So, how do I suggest that we “move pebbles” and help our disabled peers overcome the obstacles that are found all over Duke’s campus? My answer is found in my unspectacular weightlifting story: carry your peers. I most certainly am not saying that every student should help physically carry their peers in wheelchairs, scooters, and crutches up and down every staircase on campus. Needless to say, that would be an unsafe and unreasonable request. However, each and every one of us can carry the accessibility issues that some of our peers deal with into more conversations at Duke. I invite you to create a campus-wide dialogue about accessibility issues. Without someone else telling me, I wouldn’t have noticed that Marketplace’s accessible entrance is hidden by bushes or that the Languages building doesn’t have an accessible entrance at all. I hope you won’t ignore the “pebbles” and be that “someone else” for somebody on campus.

Leave a comment

Accessible Issues do Not Just Affect Duke Students…

by Bella Rivera

When the Jonas Brothers took a trip to the Year 3000, you can bet that Duke University was still under construction. As a freshman, I’ve spent only two months here but have seen constantly the impact of construction and general inaccessibility of Duke’s campus.

Both of my parents have several medical problems, but the most predominant and debilitating are their knee problems. Between them and my wheelchair-bound neighbor, I’ve been used to using accessible paths for years. When I came to Blue Devil Days with my uncle this past April, I was shocked by the lack of accommodations. I was essentially forced to have the Blue Devil Days experience by myself, because it was impossible and/or very difficult for my uncle to travel alongside me.

I’ve had a difficult time finding my way around campus as a freshman, but I can’t imagine this paired with the navigation of accessible paths, especially on West Campus. This isn’t much easier on East, in fact I’m not aware of any means to get into the dorms there. It’s easy to see that the Gothic architecture and style of the original wasn’t accommodating, but I would have thought that this would have been fixed by now. Duke spends money on remodeling and construction all the time, but how much of this goes towards practical needs such as this?

Speaking of construction, it’s really hindered the accessibility that was there to begin with. Getting to Perkins or anywhere on that side of West has to be incredibly complicated. Next time you think that you’re inconvenienced by Duke construction, think about how much more difficult it would be if you weren’t able to take the easy way around.

I can’t lie, I’m paranoid of becoming injured on campus. I’ve heard about people who were injured and couldn’t even get into their dorms anymore, and that just seems absurd. If I were to break a leg, suddenly everything would be impossible to do on East Campus. Aside from that, when my parents visit I’m not even sure if they’ll be able to get around this campus. How is it that it’s so difficult to show your loved ones the place you’ll be for four years of your life?

Anyway, I think the best step moving forward is to raise awareness. The more people realize how big of an issue this is, the more likely it is to be fixed. I hope that by joining this group, I’m able to help do just that.

Leave a comment

The Chapel Ramp is NOT a Bike Rack: The Importance of Signage ~ Cuquis Robledo

We know that Duke has become infamous for all of it’s construction on campus. And yet while some of these changes — such as the construction at Perkins Library or the BC — will eventually make access ways more accessible, it is MORE difficult now because the only accessible routes are out of the way.

For instance, to get to the BC or Science Drive, the only two ways someone in a motorized scooter (like myself) or in a wheelchair can get to these places is:

1) Behind the chapel (which I’m not complaining because it is beautiful back there)

or

2) By through Kilgo Quad.

It was a Monday morning, and I just got out of Abnormal Psych in Social Psych and I had 35 minutes to get to my Discussion section in Bio Sci. It was beautiful outside and I had decided to walk (or rather ride) to my class to enjoy the weather. I knew which route I would take. The Chapel route, I had calculated, is the most direct route to get to Science Drive. So off I rode…

Now we all know about the construction at Perkins, and how they removed the bike racks. I had noticed a week ago that some bikes were being locked right next to the only accessible ramp to the chapel, and was worried that one of these days, someone would accidentally block the path with their back, not thinking that people actually use the ramp (even adults who have young kids in strollers too).

As it turns out, when I got to the ramp, sure enough…there was a bike blocking the path. And it was locked in a way where I couldn’t even move the wheel to access through.

 dda2

dda

I was frustrated! I then had to backtrack all the way through Kilgo Quad, past Penn Pavilion in order to get to the to Science Drive. It’s already hard enough driving from Edens Quad to my classes and waiting for the ADA van that has sometimes been 15-20 minutes late from picking me up for or from class.

I was so aggravated that went back after my class to document the scene and report it to the Disability Access Office. However, there was one guy who noticed right away that the bike was blocking the path and agreed that it was not right. I thanked the gentleman for his concern and his willingness to try to help move the bike (even though it was still locked).So I took my photos and went back to my dorm.

About a week later, decided to try the chapel route again, when lo and behold…this is what I found! :)

dda3

SIGNAGE!!! That sign was not there when the bike incident occurred, so that means someone must’ve make a report to the access office (I had forgotten too) and put the sign there. I was so happy! I little signage goes a long way, and a little bit of awareness goes a long way as well!

So, thank you to the person who reported about the bike issue! You really made a difference for people with disabilities on campus!

2 Comments

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

Leave a comment

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!

2 Comments

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.

Follow

Get every new post delivered to your Inbox.