Why I do disability history: a disabled historian’s perspective

A computer generated color sketch of two hands reaching out for the other, their index fingers barely touching.

Why do I do disabled history?

As a neurodiverse and disabled person, my reasons are personal and academic. Accepting and understanding my inherent prejudices is also an important process as a historian—a process following the likes of disabled author, William Hay: “When I have thus anatomised myself, I hope my heart will be found untainted, and my intentions honest and sincere.”[1]

History may be biased, but speaking plainly and setting out what shapes our historical perspectives upfront can create better and reflective histories. As Sharon Snyder and David Mitchell note, individual identification with research subjects can inform and deepen the scholarly enterprise.[2]  As much as possible, I do not allow my personal reasons for pursuing my field to shape my results or make assumptions but they do galvanise my search for evidence of the lived experience of disabled people in the Renaissance.

I was initially drawn to my research area because I found people like myself reflected back at me from the past. Disabled people have always existed. Their histories are far more than just the institutionalisation and medicalisation of disabled bodies. The legacies of early modern disability and of madness are also extended through time into my own family. We have found ourselves within the disability locales or cultural locations of disability and mental illness, areas that Mitchell and Snyder define as “exclusive spaces”: charity systems, psychiatric and disabled residential institutions, and even segregated disabled units in mainstream schools.[3] Ultimately, these locales are united in the fact they “exist largely at odds with the collective and individual well-being of disabled people”—and, I would add, other neurodivergent individuals.[4]

The color image shows a photograph of an Istambuli street, with a tiled building in the background and people wearing fez's walking on a street. A white horse carries two baskets in the frame.
A street at Stamboul with fountain, Constantinople, Turkey, 1890-1900,
Source: Library of Congress.

For instance, in the late 1940s, my Turkish great grandfather Mustafa passed away. As a result, my great grandmother Mumine, my grandfather Aycetin, and my great aunt Ayfer were forcibly admitted by their neighbourhood to an Istanbuli institution for the worthy poor named Darülaceze. My grandfather and great-aunt were put in the orphanage while Mumine entered their hospital ward due to her chronic illness and depression. It was believed she could not provide for her children and keep up with the family’s rent. Though seeming Dickensian, the Aksaray neighbours who did this to them believed they were helping my family. Around the same time in Scotland, my great uncle on my father’s side was institutionalised due to having both epilepsy and autism. Uncle Billy was only released in his senior years once Care in the Community came into use. Autism seems to run in my father’s family while mental illness and physical disabilities seem to in my mother’s.

At the age of fourteen, bullying, an eating disorder, and my Autism Spectrum Disorder impacted my own mental health enough to led to in-patient care. Initially, I was placed near London due to a shortage of beds in Scottish youth psychiatric wards but was later sent to the historic Scottish psychiatric hospital of Gartnavel. No psychiatric ward in 2007 can match what institutionalisation was like in the early twentieth century or even before that, but I do know that the experience is one that can be as impactful on your life as what led you there. There is a reason why people claim to be survivors.

The image shows the front page of the Gartnavel Ministrel, showing the publication details and date of publication.
The Gartnavel Ministrel was a magazine published by J.R. Adam, who was institutionalised at the Gartnavel Asylum. The Ministrel and other records of the institution are digitised and available at the Wellcome Trust’s online archive.
Image Source: Wellcome Trust.

Additionally, the isolation my brother felt at a unit for autistic children in a mainstream high school, and my family’s battle to navigate the ableist and unfair British disability system, convey how disabled people are forced to navigate institutions that have power over their fates. By looking at a historical moment in which neurodiversity and bodilydiversity were tolerated and, even to an extent, accepted by their society for desirable differentness—to  paraphrase Erving Goffman— I thus attempt to challenge the idea that human diversity is a flaw or something that must be controlled, cured and fixed.[5] These concepts are not just ideas, they have adversely shaped the lives of me and my family.

Personal experiences, like the ones that I describe here, can influence our efforts to perceive and understand evidence. In order not to damage the history we produce, we must be conscious of how such personal experience can intervene in the research process and utilise it to the benefit of the history. As Henri Jacques-Stiker emphasised, when addressing disability history, one “is engaged in its study in a personal capacity, even if it is only through texts. But even more so if one is close to its acute living difficulty” and that “certain affective pre-apprehensions always accompany our efforts to understand” how scholars need to connect their selves with their historical subjects.[6]

Additionally, the idea of the insider/outsider status of researchers which emerged from the social sciences but has expanded into history, helps theorise how researcher background affects academic practise. As Robert Merton defines it, an insider is a person whose research covers a group or community they are part of, while an outsider comes from outside the group who are research subjects for them.[7] I define myself as an insider-outsider in the vein of Sonya Corbin Dwyer and Jennifer L. Buckle. While insider status can offer legitimacy and the ability to see the meaning in evidence quicker, it can also make it unclear if one is interpreting “actual phenomenon” or forcing one’s own needs onto evidence, and too much enthusiasm and empathy can stop a researcher from seeing the full picture.[8] The dialectical concept that Dwyer and Buckle put forward acknowledges that differences are not absolute and that a researcher can simultaneously be both an insider and an outsider in the research process. They also argue that researchers possessing insider status should be careful to be conscious of biases and adopt objectivity alongside subjective experiences in order to produce sound research.[9]

I am an insider-outsider on two levels. I am an insider because I am neurodiverse and disabled, and I have to be careful to ensure my background does not intervene into my analysis or transform my historical findings. But, I am also an outsider in other ways: for example, when it comes to bodilydiversity like dwarfism and gigantism. History also inevitably makes us an outsider temporally from historical subjects with whom we may share similarities with but also significant differences. Having anatomised my prejudices and biases, my lived experiences, and my background, I hope that my work as a researcher will be judged sincere and historically sound, while also driven by my passion and commitment to making the hidden histories of disability accessible, especially to those who might need to know they are not alone, but a part of the historical fabric of humanity.

Jessica Secmezsoy-Urquhart is a disabled PhD historian at the University St. Andrews. Their work is attempting to reveal the hidden history of disabled people at Renaissance Royal Courts. They write the history blog Past Caring and try to engage and teach young people about varied topics through their contributions to BBC The Social.  They can be reached on twitter at @JessicasuAKA, at their FB page @pastxcaring,  or by email at jyesu@st-andrews.ac.uk.

Header image: Illustration of two human hands, by Claudio Schwartz. Via Unsplash


Notes

[1] William Hay, Deformity: An Essay, Volume 1 (London, 1754), 3.

[2] Sharon Snyder and David Mitchell, “Afterword- Regulated Bodies: Disability Studies and the Controlling Professions,” in David Turner and Kevin Stagg (eds), Social Histories of Disability and Deformity (Oxon, 2006), 177.

[3] David Mitchell and Sharon Snyder, Cultural Locations of Disability (Chicago: University of Chicago Press, 2006), 3.

[4] Mitchell and Snyder, Cultural Locations of Disability, 4.

[5] Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Touchstone, 1986 [1963]), 5.

[6] Henri-Jacques Stiker, History of Disability, (Ann Arbor: University of Michigan Press, 1999), 1.

[7] S. Gair, “Feeling their Stories: Contemplating Empathy, Insider/Outsider Positionings, and Enriching Qualitative Research,” Qualitative Health Research 22 (2012): 134-143.

[8] Sonya Corbin Dwyer and Jennifer L. Buckle, “The Space Between: On Being an Insider-Outsider in Qualitative Research,” International Journal of Qualitative Methods (March, 2009): 54-63; 58-9.

[9] Dwyer and Buckle, Insider-Outsider, 54-63.

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