As an undergraduate researcher in Ghana, I knew I'd encounter different practices and beliefs about disability, and see firsthand the struggles of people who lacked basic resources.
I remember vividly the first time I saw adults with physical disabilities crawling on sidewalks, flip-flop sandals positioned carefully on their hands and feet to protect them from the rough ground. I'd been told about this and even seen pictures, but the image still shocked me.
Three months into my study abroad program, I embarked on the independent research portion of the curriculum. My study could focus on virtually anything that appealed to me. Pushed by my parents and encouraged by a family friend who was an international disability expert, I had been careful to set everything up in advance for my short-term project on blindness and social stigma. Our friend’s stories of working on deafblindness issues in Asia and Africa dazzled me, and I was curious about following in her path, even for only a short period.
On the first day of my project, I hopped a taxi from my temporary home at a local hostel to the office of the Ghanaian Association of the Blind. It was rush hour and Accra’s streets were packed. People selling gum, cigarettes, and compact discs wove their way between stalled traffic at lights, along with children and adults begging for money. It was here that I first saw adults with physical disabilities crawling on the sidewalks.
I arrived at the Association of the Blind and tried to make my way through the complex in search of the appropriate office. As a 21-year-old white American woman, I stood out. People were curious. Two men in their 20s approached me. They were not verbal, so they began signing to me. Although I did not understand most of what they said, we all grinned widely as we tried to communicate across the layers of barriers. They led me around the facility to the office where I was to meet an internationally respected disability expert, and we said our goodbyes. I recall a feeling of utter naturalness and comfort. It hit me: I was in the right place, in every sense.
This was the first time I truly felt the universality of my position as a person who grew up in the disability community. Until then and, indeed, for many years after, my feelings about disability in my professional life were marked by ambivalence. While part of me perhaps always knew I would end up dedicating my career to disability issues, I was reticent – scared, even – about committing. Was I really ready to welcome disability into my work life, since it would always be a fixture of my personal world? And, if I didn’t want to be a special education teacher or service provider, what could I possibly do?
I had been immersed in the disability world since the age of four, when my sister was born. Although we did not know it for many years, Katie had CHARGE syndrome, a rare genetic condition found in about one in 10,000 births. I grew up surrounded by children with disabilities and their families. I visited the local parent resource centre with my mom, helped my parents flip through binders of special-ed law during our struggles to obtain appropriate school services, and I accompanied my parents on countless visits to doctors, specialists, and therapists. As the older sibling, it was my job to help and I took pride in it.
During my semester in Ghana, I was shocked by the level of interest among my peers and professors regarding my research. As a sociology and anthropology major, I had no idea that disability was even a viable area of study. I didn't know of any scholars in traditional academic areas who focused on disability, nor had I read or even heard of any books or articles on the topic. While gender, sexuality, and race were fair game in terms of identity politics, disability somehow remained in the shadows. Even if I’d been ready to pursue an academic career researching disability, I did not yet know it was an option. I had no models.
In the years that followed, I largely forgot about disability outside of my family life. I worked abroad briefly after graduation and then returned to the U.S., where I embarked on the typical life of many 20-somethings. I lived in a large city filled with countless restaurants and bars, worked diverse jobs of various interest levels, hung out with my friends, and met the incredible man I would later marry.
The experience opened my eyes in new ways to disability realities I had not encountered. I saw multiple children whose disabilities – physical and intellectual – were inseparable from abuse in their former homes. Most of the kids never learned basic living skills, much less anything academic. Well-meaning and overworked staff, many of whom were just teenagers themselves, tied children to wheelchairs to keep them in place.
I came back to the U.S. with a new sense of direction. I began an interdisciplinary Master’s degree program and promptly fell in love with a class on the anthropology of disability. I had not known the topic even existed! Finally, I was exposed to disability studies literature, as well as social science and humanities approaches to disability. I was hooked. I read everything I could find, wrote a thesis about parent advocacy efforts, and set out to find my dream job in disability. Unfortunately, it remained elusive and I wandered elsewhere, dedicating myself largely to issues of education, migration, and human rights. As always, I was drawn in by the individual faces and stories behind broader lived experiences, yet I had little interest in working my way up a nonprofit ladder. I wanted to stay in the thick of it, to immerse myself in life histories and absorb everything people would reveal. After years of fighting it, I gave in: it was time to get a PhD in cultural anthropology.
Five years later, I can finally say that my old ambivalence is gone. I have immersed myself in the formal study of disability and am pleasantly surprised by the support I have received from the academic community and beyond. I spend my days reading, writing, and talking about disability issues, and I am lucky to be involved with some fantastic local organizations. I have conducted research in Central America and the U.S., presented papers at multiple conferences, and I am in the process of writing a dissertation on family experiences with complex diagnoses.
I still do not know how I fit into the dominant perceptions of what it means to be a sibling of someone with disabilities. My parents were warned when Katie and I were young that I would likely be jealous or resentful of her, since she would receive so much attention because of her disabilities. This always struck me as ridiculous, even as a child. Did experts really think that I was selfish enough to resent my parents’ attempts to find new therapies or educational techniques?
Even today, I struggle to express my childhood feelings about Katie’s disabilities for one simple reason: Katie was normal to me. I knew nothing else and, even in the earliest weeks of Katie’s life, when we did not know if she would survive nor did we understand the complexity of her intellectual and sensory disabilities, I was fiercely proud of her. She was my sister. She was the only sister I had, the only sibling relationship I would ever know.
Even at the peak of my family’s legal battle to meet Katie’s educational needs, the only profound feelings of sadness and anger I had were directed toward the failure of the institutions we relied upon to meet our needs, not Katie. The key is that these needs were all of ours. I learned early that the perfect families depicted on television are nothing but fiction, and in reality we all have our struggles. I realized, too, that we live in a world in which people are literally cast aside. This was probably the hardest thing to process as a teenager, and I recall a palpable sense of grief for the naïve optimism I saw in many of my peers.
Looking back at my circuitous path, I should have known that I was a researcher at heart. My passions are meeting families, hearing stories, writing what I see, and sharing these powerful disability realities with people who might not encounter them otherwise. My aim is, and perhaps has always been, to get the word out. I want to learn, witness, and disseminate.