By Nicole Schroeder
“You should get a therapist to help you cope, there’s really no help for your people.” This crass statement, issued by my first pain management doctor, ended up changing my life. It wasn’t the apparent hopelessness of my situation that struck me, but the casual tone in which the doctor cast my experience as one of inevitable loss and suffering. I would never be cured, so why even bother treating the symptoms? In the medical gaze I was a hopeless case that would create negative statistics and evidence the failure of medicine to fix all aberrant bodies. Entering the room with multiple conditions (including Ehlers Danlos Syndrome III, Arnold Chiari Malformation, Mast Cell Activation Disorder, and Postural Orthostatic Tachycardia Syndrome) I had little hope. I knew that it was a long shot to rely on the hospital system with its dismissal of alternative medicine. I was still disappointed, dismally so. I remember buttoning my coat as my mom ranted at the doctor for his insensitivity. I remember storming out of the room because I wouldn’t let myself cry in front of an uncaring doctor. Looking back at this incident that occurred five years ago, I wish I could tell myself that it would turn out ok and that this terrible incident would spark a fight inside me to sustain my career.
At the time I was sophomore at Colgate University. After a slew of doctors appointments over Christmas break I returned to school to begin my third term. It was nice to escape back to rural New York where I could avoid doctors appointments for a few months before starting the cycle again. My day-to-day actions were the same, but I couldn’t shake the new stigma placed upon me. “Your people.” It was the first time that someone had explicitly, without reservation, called me disabled. It was the first time that the line was so explicitly drawn. Despite a growing list of symptoms, I had waited for the break to hold all of my diagnostic appointments. Winter break had been a staggering experience – my body poked and prodded and my personal history scrutinized. I had never been categorized in such stark terms. I was disabled. I had been disabled my whole life and yet had no idea. Suddenly everything I considered normal was reversed and the proof lay in my body. The holidays were tinged with tragedy. Everyone pitied me, the young woman who gained a slew of diagnoses. The young woman who lost the pain-free, active, able-bodied future that should have been guaranteed.
It was easy to shut myself off from the strained smiles, teary eyes, and endless questions. As I struggled with the change in identity politics, I turned towards academia to help make sense of the shift. I was nervous to adopt the term ‘disabled’ and hoped that reading broadly in disability studies would help me make sense of my lived experience. If I belonged to “a people” I should at least know their history. I should recognize the major leaders of the rights movement, shifts in political and legal ideology, and theories behind the oppression of disabled bodies. Maybe understanding how disabled individuals made sense of their world, I thought, would help me make sense of my own.
That winter I read everything. Sitting in the library looking out across Taylor Lake I read author upon author – Paul Longmore, Simi Linton, Michael Rembis, and Susan Burch were some of the first I came into contact with. I read prologue after prologue where writers shared their experiences. Most argued that their inspiration came from a pivotal moment in their life as a disabled person. I cried reading their anger, resolution, frustration, and perseverance. I was inspired and determined to claim my new identity. I could still have whatever aspects of able-bodied life I desired provided that I found decent medical support, symptom management, and fostered a loving community around me. I was empowered and resolute that this was not simply a loss, but a shift to a different way of living.
The following year I wrote my undergraduate thesis while studying abroad in London. I walked by the British Museum every day and researched in the most stunning archives I have ever set foot in. I traveled to Ireland, Croatia, the Netherlands, and throughout the UK. I found ways to accommodate my travels with braces, exercises, and new pain management techniques. My cohort acknowledged my disability without it feeling like a burden. I proved to myself that it was possible to live the kind of life I had always wanted, and I returned to Colgate.
It was my senior year and I was debating the question “what’s next?” I loved writing my undergraduate thesis, a study on captivity narratives written by British women during the Sepoy Rebellion of 1857. As much as I enjoyed the topic, I didn’t know whether I wanted to build an academic career on it. I had been set on teaching history at a college level from the 10th grade. My four years at Colgate were geared towards grad school, but over the course of my undergrad career my interests shifted. I had specialized in early contact studies between Native American peoples and European colonizers. During the application process I realized I wanted to shift from Native American studies to the nascent field of disability history. I had been reading in the field for two years at that point, and the gaps in the historiography were clear. Very few articles had been published on disability in early America. Fewer still on the experiences of disabled persons.
When I interviewed here at UVA and met my prospective advisor he asked about my interest in disability studies. I had disclosed my disability in my application essays, a decision that I continue to stand by. At times it’s frustrating to wonder whether my disclosure affected my admission status, but I think it’s important to push for transparency. Whereas I felt uncomfortable disclosing my status, I hope that my decision to do so will help increase visibility of disabled persons in higher education.
When my advisor asked about research topics I was (perhaps naively) adamant about reclaiming individual experiences. I focus on early America – both the colonial period and Early Republican periods, which poses issues when considering source materials. I wanted to start from the most simplistic question we have in history – “How did they live?” There was so little published on day-to-day experiences of disabled individuals in colonial America or the Early Republic that I was slightly dismayed. Where were “my people?”
My research now has evolved beyond the question “How did they live?” My master’s thesis focuses on the disabled public of early Philadelphia in the 1820s and 1830s. I began the research by looking at Blockley Almshouse, the first public hospital in America. Reading the history of the institution I came upon a much more fascinating subject – an outpatient program that supported disabled individuals in the city. Going page by page through the early papers of the Almshouse, I realized that there was a larger story to tell about institutionalization and the evolution of the term “disability” in the early Republic. I reviewed minutes of the Guardians of the Poor (the main government agency to dispense poor tax aid in Philadelphia) as they established the Almshouse and the outpatient program. I looked through the Minutes of the Guardians of the Poor, Almshouse patient records, poor tax lists, maps of city streets, physician records, and interviews with disabled individuals. Going over these records I insisted on telling the story from the patient perspective, and to my luck I found records that detailed the people I so desperately wanted to reclaim. I continue to sort through their records, teasing out the information hidden within what has been considered government records. So far I’ve been able to find the following:
- Disabled people had families – large ones at that. They married, had children, grew old, and functioned as independent heads of household despite their impairments.
- Disabled people actively protested institutionalization. They complained that the institution was more expensive than outpatient aid (and they were absolutely correct).
- Disabled people worked just the same as other laboring classes in early America, choosing jobs that could be modified to meet their needs. Stationary jobs were prioritized because they demanded little mobility and allowed individuals to work from home where they might surround themselves with family members and tools as accommodations.
- Disabled people are present in the records. Whether we think about the government officials (Guardians of the Poor) who interviewed them, the court cases in which they appeared, or their residence patterns in the city – it is clear that disabled individuals were publicly visible and contributed to the overall urban community.
- Echoes of disabled voices shine in government documents, even in medicalized histories. Disabled persons advocated for their right to tax relief. They demanded pensions on the basis of their compromised economic capability and named their disabilities in order to legitimize their claims. Terms were not simply imposed by doctors, but actively claimed in order to excite sympathy and to demand protection.
I’m not sure where this research will take me as I move forward with my dissertation. I’m not sure what other truths I might uncover about the experience of disability. Despite the overall mystery that clouds their lives, I’m looking forward to uncovering the history of disabled peoples in America. It is explicitly apparent to me now that disabled individuals are everywhere in history – combatting norms, posing as paradoxes, foiling able-bodied society, resisting efforts to be rehabilitated, and showing pride in living a different lifestyle. While five years ago I was scared to consider myself a part of their ranks, I now proudly claim them as “my people.”
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