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TEDx Georgetown
Miss Interdependent: Perspectives on Disability and Independence | Marissa Nissley | TEDxGeorgetown
TEDx Talks

Miss Interdependent: Perspectives on Disability and Independence | Marissa Nissley | TEDxGeorgetown

"Many will tell you that guide dogs give blind people freedom and independence. That is simply not true. I have always been fiercely independent. Smalls has changed my life, but not in the way most people think. She has shown me the power of interdependence and the beauty, the freedom that comes from acknowledging we all rely on each other." 

Miss Interdependent

I had way too many nicknames as a child. Gigi, Peach, Mookie, Smalls, Momo Jojo, the list goes on. But the one that stood out the most—though not used by my family—was Miss Independent. To me, it was a compliment of the highest order because people used it when I exceeded their expectations, when I did something on my own. I loved being the person who said, “don’t worry, I got it.” But I took this to an extreme, believing I needed to be completely self-sufficient and never rely on others for help.


But there was one problem: 


My eyes don't work all that well. 


You see, my desire for complete self-reliance collided with my reality as a blind person who needed accommodations like magnifiers, large-print textbooks, and extended time on exams.  Certainly I never pictured Miss Independent traveling with a white cane or guide dog. I thought I needed to conceal my disability and never ask for help. However, this wonderful guide dog on stage—who leads me through obstacles and keeps me safe—showed me that not only my personal attitudes but our whole society’s view of independence is completely wrong. 


Growing up, my mom always said “you can be anything you want, except an airplane pilot.” She included that modification because my parents discovered very early in my life that I was legally blind. I’m albino, which means that my body doesn’t produce the pigment that darkens hair, skin, and eyes. In fact, my mom knew since the day I was born (I mean, it’s pretty obvious, isn’t it?), but the doctors told her that it was impossible because I did not have red eyes. I don’t know what textbook they read in medical school, but that’s a myth. In addition to platinum blonde hair and pale skin, albinism causes varying degrees of visual impairments. Some people have enough vision to drive, but others—like me—are legally blind. What I see twenty feet in front of me, you likely could spot four-hundred feet away. Think of a foggy bathroom mirror after a hot shower. For example, the historic steps leading to Healy Hall, Georgetown’s flagship building, blend together, appearing like one flat slab of stone instead of a staircase. Since the day I was born, my world has consisted of colors and vague shapes. 


But here’s the weird part: 


The only reason I know I am disabled and have such poor vision is because people—my parents, friends, doctors, and teachers—told me. I do not perceive the world as blurry. If sighted people never filled me in, I would’ve assumed that everyone squints in the sun and trips over curbs. As a child, I did not understand how different my world looks from yours. Even today, I struggle to imagine how fabulous I must look to you on stage, how you could spot my sunglasses and guide dog from across Gaston Hall. It simply is not a part of my reality. 


As a result, long before I grasped the implications of living with low vision, I learned how people talked about it. To my family, it became a fact of life, something that they did not want to define or hold me back. Setting aside their anxieties surrounding my new diagnosis, my parents encouraged me to bounce on trampolines and traverse playgrounds. Independence and self-reliance were values my family instilled since the second I could walk. I learned how to read the whiteboard, cross intersections, and navigate the crowded hallways of my elementary school on my own. You can ask my mom—who's in the audience right now—little Marissa was incredibly stubborn. I would tell her that I didn’t need magnifiers, monoculars, and large-print books. I wanted to do everything on my own, even if it forced me to squint and took twice as long.


However, I quickly noticed that not everyone shared my family’s confidence in my abilities. I encountered adults who spoke to me in high-pitched voices and advised against honors courses. These low expectations only heightened my desire for independence. I wanted to prove them wrong, to live a “normal” life without any additional assistance. 


Consequently, using a cane or guide dog was unthinkable. I believed that using any mobility aid would signify to the world that I was vulnerable, incompetent, and unable to travel on my own. My strongest opposition was reserved for guide dogs because I believed that they did all the work, and that people got them as a last resort, when all else failed. I felt that the only way in which I could prove my value as an individual—not a statistic, pity case, or inspirational poster child—was to minimize my differences. Filling my resume with internships and extracurriculars, I worked tirelessly to demonstrate my intelligence and self-sufficiency. At the time, I steadfastly believed that being independent meant I couldn’t acknowledge my limitations, even to the detriment of my physical and mental health. My legs were covered in bruises because I refused to use a white cane or guide dog. The fluorescent lights of classrooms felt like they were burning my eyes, but I refused to wear sunglasses as they would cause me to stand out. Keep in mind that light sensitivity is the visual equivalent of a bullhorn constantly blaring in your ears. That’s why I’m wearing sunglasses today. Back then, I was willing to endure intense headaches and fatigue for the sake of blending in. And heaven forbid I asked someone to close the blinds or dim the lights…because that would mean I was asking for help. 


I’m not the only one who has felt this way. Independence and individualism are core values in American society. We love hearing the stories of self-made millionaires and paralyzed individuals who learned to walk again. We are told to “pull ourselves up by the bootstraps,” to overcome our adversities through hard work and self-determination instead of seeking assistance from someone else, especially the government. As a result, we typically view visible markers of disability such as canes, walkers, wheelchairs, or any other mobility aids negatively. We view these tools as a crutch, a sign we are “giving up” or “giving into” our disabilities, and something that limits our possibilities. For example, “handicapped stall,” “wheelchair bound,” and “confined to a walker” are common phrases in our vocabulary. There is a toxic, widespread belief in American society that being independent means one can never show vulnerability or ask for help. Mobility aids, as a result, signify weakness and failure because they acknowledge that the user needs assistance. Independence in this view is “all-or-nothing,” people either have it or don’t. If you don’t have a car or a full-time job, you are not “valuable” or “productive.” If you have a disability or chronic illness that prevents you from possessing those two things, then you are a burden. I thought that if I learned to use a white cane or a guide dog, I would no longer be independent. 


You may be thinking “I’m not blind and I don’t use a walker or wheelchair, so this doesn’t apply to me.” Well first off, you can become disabled at any time, whether that be through illness, injury, or merely aging. I don’t say that to scare you, but to highlight that disability is a part of our lives and the human experience. But beyond the realm of blindness and mobility aids, our over-emphasis on self-reliance has devastating effects. Think about the way Americans view those who rely on social security checks, seek psychiatric treatment, or even need tutoring in math. Compare how we regard people who rent an apartment versus those who live with families. We tend to offer judgment and condemnation instead of empathy and compassion. And for those who are struggling, they often suffer alone. In the workplace, personal relationships, and nearly every other facet of life, there is so much shame that surrounds seeking help.


That said, if I spent the better part of twenty years resisting any kind of assistance, why is this yellow labrador standing next to me on stage? 


Well, the coronavirus pandemic flipped my world upside down. As a bored college freshman sitting in my childhood bedroom, I started a podcast titled Legally Blonde & Blind. I had no recording, editing, or graphic design experience. All I know is that I had a burning desire to share my story and connect virtually with others. When I began research for my first episode, I learned about the social model of disability, the idea that people are disabled by external barriers, not their impairments or differences. Many argue that it’s the lack of tactile curb bumps, stair markers, and Braille signs that disables blind people, not their low vision. Imagine how different the world would look if it were designed for people like me (everything would be in size 72pt font!). While no model can perfectly encapsulate disability, it helped me realize that my blindness is not a problem or source of shame. Instead of regarding my albinism as a genetic mutation, I began viewing it as a characteristic and a part of who I am. 


I also met several happy, thriving blind people who used all kinds of assistive technologies. Through their example, I realized that canes, screen readers, and Braille are “tools in the toolbox” blind people can incorporate to enhance—not diminish—their independence. They expand rather than limit one’s autonomy. Specifically, I discovered that working with an assistance animal is an incredibly collaborative act. For those who do not know, guide dogs maneuver their handlers around obstacles and lead them to objects like steps, curbs, or doors.  They are not robotic GPS systems that can memorize our class schedule or tell us when to cross the street. You heard that right, even though guide dogs can prevent us from proceeding if a car is in our line of travel through what is called intelligent disobedience, handlers are responsible for determining when it is safe to cross. We do so by watching or listening to traffic patterns. Contrary to popular belief, guide dog users must be leaders and excellent communicators. I realized that if I ever wanted to receive one, I would need to improve my navigation skills. Applying for a guide dog was a rigorous process, far from a last resort.


Last January, I asked myself, why am I settling for simply getting by? I took orientation & mobility lessons where I learned to navigate Union Station, use the metro system, and cross intersections without relying on street signs. One afternoon, my instructor asked if I was alright with tripping into things. For most of my life, my answer would have been yes. But once I finally stepped foot on Georgetown’s campus sophomore year, I realized that I wanted to invest in myself, to travel as safely and confidently as possible. There were in fact times I felt uncertain and unsafe when traveling alone. The construction signs, Lime Scooters, and cones that littered walkways were my mortal enemies. One evening while I was walking to an event off campus, I ran straight into caution tape. Unbeknownst to me, there was an attempted robbery and shooting a few buildings ahead. The street, through my eyes, transformed into a series of blinding, flashing lights. I could barely see a thing. This was one of many encounters that forced me to realize that my expectations for independence were unrealistic. With the blaring sirens and impromptu road closures, everyone was confused and disoriented. I had no reason to feel ashamed.  


And finally, I simply choose joy. I wish we considered happiness—not just necessity—when discussing mobility aids. We typically think of them as bland and clinical, but the truth is they can be an integral part of who we are and how we express ourselves. When I heard blind people describe how their guide dog felt like their best friend, an extension of themselves, I couldn’t imagine how much joy that would bring me. I wanted a companion who would bring me Nyla Bones in the morning, snuggle up to me before bed, and most importantly, make my life much, much easier. There is so much freedom and power in admitting you can’t do it all alone. Although I could in theory walk to class or ride the metro without one—albeit with a few bruises, I deserved to be confident, to take up space, and most importantly, be happy. 


Enter Smalls. A two-year-old female yellow labrador from the Guide Dog Foundation. Our introduction could have aired on an episode of TLC’s Married at First Sight. You see, I did not know her gender or color until I arrived at GDF’s facility. I cried when I first learned her name. My cousin always calls me “Smalls,” and as cheesy as it sounds, it felt meant to be. Don’t get me wrong though. Our training process was far from rainbows and sunshine. In fact, the first day we met I lost hold of her leash and she ran across a field. In our first twelve hours together, Smalls saw me cry at least three times. But fortunately, she still liked me…or at least the giant bag of kibble the Guide Dog Foundation provided. 


Learning to travel and communicate with a guide dog is one of the hardest things I’ve ever done. I needed to acquire a new language and collaborate with a creature—a complete stranger—who could not communicate verbally. Training together truly felt 50/50. Smalls can identify a whole host of objects, such as curbs, steps, trash cans, turnstiles, and doors, that otherwise have no significance to a dog. She can guide me around obstacles, even low-hanging tree branches that would not hit her. But that doesn’t mean I’m off the hook. Every day, I have to actively choose to take on the responsibility and effort associated with training a guide dog. One of my instructors explained that “Every moment is a teaching moment. Your dog learns from everything you reinforce, ignore, or correct.” I have to think about my body language, intonation, foot positioning, and hand gestures. Not to mention that I need to feed, play, relieve, and care for her like any other dog. 


At first, working with Smalls was extremely overwhelming. It took every ounce of my energy. I wondered how I could ever balance guide work with school, extracurriculars, and my social life. But eventually, the pull of her harness began to feel natural. We could traverse intersections, malls, and a local Panera Bread smoothly. I started to shed the subconscious stress that navigating the world solely through my low vision brought. On our final day of training, we traveled through Manhattan, encountering crowds, construction sites, and subway stations in all of their glory. Normally, being in such a busy environment would put me in a near-constant state of panic. But with Smalls, I no longer had to worry about stumbling into a lime scooter or a tourist who insisted on taking selfies in the middle of the street. Despite my fears, she did not limit my autonomy. Quite the opposite. I can do everything I did before, but with more joy and less stress. 


Smalls and I have become interdependent. We rely on each other. And through this relationship, we have developed what many in the disability community refer to as “access intimacy.” We constantly observe the other’s body language and behavior. With a single cue or hand motion, I can tell her exactly what I need. She has become my eyes, and I, her kibble lady, the most important person to her survival. We are each other’s fiercest protector and closest friend. In my Intro to Disability Studies class, we read a blog post titled “Access Intimacy - The Missing Link” that beautifully describes the relationship Smalls and I have formed:


“Access intimacy is not charity, resentfulness enacted, intimidation, a humiliating trade for survival or an ego boost.  In fact, all of this threatens and kills access intimacy.  There is a good feeling after and while you are experiencing access intimacy.  It is a freeing, light, loving feeling.  It brings the people who are a part of it closer; it builds and deepens connection.”


Had I clung onto my beliefs about self-reliance, that being Miss Independent meant I could never ask for help or use mobility aids, I would have never been able to experience this bond. Most of you will never use a guide dog or cane. But you can still experience the beauty of interdependence and access intimacy. How? First off, listen to the needs of your friends, family, and community, especially those of disabled folks. Don’t try to recommend your favorite essential oil or insist on dragging us across the street if we told you three times that we are fine. Seek to empathize with, not express pity or charity towards, us. And when you are struggling, ASK FOR HELP! We all will thrive if we reach out  to those around us—whether they be professors, managers, partners, or parents—and share our hardships. Instead of feeling shame, guilt, or embarrassment, I promise that you will find connection. 


I am so grateful that this goofy, affectionate, and wickedly smart yellow labrador showed me that I do not have to wander this world alone. Whether or not we care to admit it, we all rely on friends, family, and community. Cell Phone towers and supermarkets remind all of us that very Americans are truly self-reliant. Smalls showed me the beauty in embracing rather than resisting this reality. She doesn’t resent the fact that she relies on me for food and water. She revels in the bond we’ve formed, and in return, keeps me safe. We work together to expand our possibilities. 


Many people say that guide dogs give blind people freedom and independence. But that isn’t true. I have always been fiercely independent. Smalls has changed my life, but not in the way most think. She showed me the power of interdependence and the freedom that comes with accepting that we all rely on each other.

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