By Melissa Carney, Director of Outreach & Engagement
When people think about vision loss, they usually think about darkness, deprivation, and roadblocks. They ask a million questions in their heads about how to proceed, always winding up at the same answer: I am not sure.
To many, losing your sight, whether in childhood or adulthood, is devastating. Sometimes you have advanced warning of your predicament, and sometimes you do not. Even those who are born blind may struggle to fit into a society that relies heavily, almost exclusively, on visual feedback and context.
But what if we were to think about a loss, as a gain in disguise? What if we made a list in our minds of the things we felt we could not do, the things that seemed impossible without sight, and instead of crossing them out, we asked ourselves why we have to cross them out in the first place? Why should we count ourselves out so easily? Why does losing our vision mean that we must give up our passions, dreams, and goals in life if our minds and hearts have not changed?
Instead of asking why our past has come to this, we could ask, how we can move forward. Half the battle is proving to others that we can hold aspirations and live independent and fulfilling lifestyles, but the other half of the battle, and the part that must come first, is proving that to ourselves.
We must find confidence in our abilities, the aspects that make us unique. Bridging the distance does not always refer to physical places or interpersonal relationships. We often must bridge the divide between our condition and our emotional response, our immediate predicament, and our self-respect in the long-term, our frustration and our perseverance.
These bridges do not grow overnight. It wouldn’t be fair to sugar coat the challenges we endure, or minimize our physical and emotional journeys as individuals, but, it would also not be fair to ignore a door that hasn’t been opened, or close a door that has yet to be explored. As Helen Keller once said, you do not need sight to have vision.
I am going to share my story to shed some light on how I came to embrace my blindness, and how I plan to carry that positive attitude through my work here at PCB.
I grew up in the small town of Deep River, Connecticut. By “small town,” I mean no sidewalks, chain restaurants, or public transportation, one accessible street crossing, and a high school graduation class of only about 160 students, including kids from two other neighboring towns.
I lost all my sight to bilateral Retinoblastoma, a form of eye cancer, when I was two years old. I was the only person with a physical disability in my school district. I did not meet another blind person for years, nor did I learn terms such as “accessibility” and “The ADA.” To put it simply, at that time, I felt alone. I felt like an outcast, and I had no idea how to express my frustration to those who could not understand.
Fortunately, even when I was tempted to give up on myself out of the frustration that I did not belong, my parents never gave up on me. Instead, they drove me to horseback riding lessons and gymnastic practice. They watched me trot around and somersault to my heart’s content, because, even if they could not understand a life without sight, they definitely understood joy, a joy that transformed into empowerment for their blind daughter. Horseback riding was the initial gateway to accepting my blindness. In it, I found a passion, a hobby that placed me on a level playing field with my sighted peers. I was defined as a horseback rider, a person, before my disability. Once I was able to separate my identities in my mind, I was able to remodel my self-perceptions. I began to see myself as a person who happened to horseback ride and happened to have a disability. My disability did not define everything about me.
I cannot lie and say that this was the foolproof solution. After all, I was a child, and then a teenager, who was obsessed with fitting in. For the longest time, I felt ashamed of my cane, frustrated that it highlighted my differences, and not my accomplishments. However, in high school, I was selected to attend a week-long leadership and community service training for people with disabilities. During our first workshop, our counselor asked, “What has your disability taught you?” Naturally, I thought of all my struggles, all the painful moments in which I was discriminated against, like how I was the last person to be picked for a group project, how I wasn’t invited to all the popular kids’ parties because I couldn’t play on their sports teams. But then, I thought of something else: that I am still standing tall. My grades and community service earned me a spot in a competitive program at the UConn campus.
What is the prevailing theme in all my struggles, then, because of my disability, that enables me? It is perseverance, a willingness to try no matter how many times I am knocked down, and a drive to forge across the bridges in my path, so that I may erase the chasms of my own self-doubt. Without fully realizing it, I turned every challenge, every mistake, into an opportunity to grow. I hesitated only a few seconds before answering my counselor, “My disability has taught me the value of determination, and it has also taught me how to problem-solve.”
Through that week of leadership training, I not only learned how to advocate for my own rights and accommodations, but also how to collaborate with others who experienced similar challenges. I found strength in my own voice in helping others find theirs. I found strength in the power of numbers, human empathy, and teamwork. That one week was my first introduction to the meaning of community, the meaning of motivating one another to the point where you can confidently stand on your own as a collective group, but also as individuals.
I took this newfound determination and ran with it. Since life is all about defining, and redefining oneself, I chose to adjust my self-perception. I was a person first, and someone who happened to have a disability, but I was beginning to have pride in that part of my identity. I actively referred to myself as a person with a disability, rather than avoiding it. I knew that with confrontation, came acceptance. When finally, able to interact with others from my community, I began to ask questions, embrace my disability, and step out of my comfort zone. I came to know the transformation of adversity into success.
I felt inspired to break away from my small town, and the boxes I was placed in by default as the only person with a physical disability in my area, in order to find ways to educate society about disability pride. I attended Mount Holyoke College, where I became a peer mentor for students with disabilities. Like many college students, I fought against inaccessible course materials, and even a professor who refused to allow my guide dog in class. This professor asked me to leave my accessible seat near the door, after I had already set up my assistive technology, and move to the opposite end of the classroom. He then went on a 15-minute rant about how, if my dog misbehaved and licked him, he might have an allergic reaction. During attendance, he referred to me as, “Melissa with the dog.” I was shocked and embarrassed. I wanted to sweep this incident under the rug, change classes with the registrar, and enjoy the last semester of my senior year. Instead, I thought about other students with disabilities with service dogs who might sign up for a class with this professor in the future. I thought of someone else being singled out for the disability and made to feel as though they did not belong in class, and I reported this professor for public discrimination. I had to file multiple documents, spend hours recounting my story over and over, and sacrifice a few social events. In the end, the professor was found legally guilty for discrimination. I tell you this story to demonstrate that, even when advocacy and outreach seem tiring and pointless, if you truly dedicate yourself to the cause, you may be surprised at how many will fight by your side, and how many individuals you may save from similar experiences.
While scenarios such as the one I described may have sparked certain emotions and difficult conversations, I continued to advocate for equal access for the benefit of my community, for the benefit of those who do not yet have the resources to speak out. Every victory is not just a victory for me, but for my community. With that philosophy in mind, I interned with both IBM’s Accessibility team and the National Council on Independent Living, navigated the streets of both Boston and Washington DC, advocated for legislation on Capitol Hill, and traveled to multiple leadership seminars and conventions for disability rights from Florida to Las Vegas, and so on. All the risks that I took, all the mentors, mentees, and friends that I met, carried me to this point in my life.
Do not get me wrong, I still make mistakes. There are times when I wish I would have spoken up. For example, just last night, someone silently walked past me while their dog tried to lunge towards my guide dog. I wish I would have told him to speak up when he is passing, and not distract a working dog. There are times when I do not measure the depth of a curb correctly and end up scraping up a knee. There are even times when I keep talking before realizing that the person I am with has walked away. I think most of us have been there. Being blind is not glamorous, nor should it be. What is the fun in doing everything perfectly? How then, would we learn how to take the road less traveled?
If you would have asked 10-year-old me, a small-town girl from Connecticut, what accessibility looked like, I would not have had an answer. Now, over a decade later, I am still gathering those answers, but I know for certain that the roots of accessibility lie in community growth, compassion, and perseverance.
I am thrilled and honored to serve as the Director of Outreach and Engagement for PCB and represent my fellow peers. I continue to emphasize the importance of individuality, meeting every single person where they are, and helping them move forward in whatever ways suit them best. I continue to build and form new relationships with community partners, such as university disability offices, PAB agencies, centers for independent living, and even local equestrian centers and adaptive sports organizations, in order to spread awareness of PCB and strengthen collaborations for common goals. I continue to brainstorm outreach projects, in which we can educate our communities about topics such as best practices for interacting with blind patients in healthcare settings, public behavior towards service dogs, and accessible voting. As we explore the future, I want to make sure that all our peers’ voices are heard, that we touch on all the issues that are important to you. I want to make sure that even if we cannot meet in person, we can continue to find innovative ways to connect virtually. I believe that community outreach and engagement is the key to sharing our resources, passion and compassion, and combined skill sets. Alone, we are a force to be reckoned with, but together, we are unstoppable. One person can build a bridge with time, but a group can build that bridge faster, and lay the foundation for other bridges along the way. Life is a series of bridges, rivers, mountains, valleys, and other landmarks that have not yet been mapped out, but the world seems a lot less vast when we can traverse that distance together. I am excited for the journey.