Beyond Mortality

Epidemics and pandemics are typically discussed in terms of morbidity and mortality, susceptibility and immunity, and social responses to and impacts of the immediate epidemic event. Much less attention is paid to the longer-term consequences for individuals and populations in terms of the sequelae of infections, such as blindness after smallpox, deafness due to congenital rubella, and paralysis after polio. This same tendency is observed in the COVID-19 pandemic, with counts of cases and deaths, questions of immunity, and economic impacts at the foreground and long-term or chronic health impairment of COVID-19 survivors receiving less attention. Much of the existing research on the effects of such disease sequelae has come from disability history; in addition, the bioarchaeology of impairment/disability is an emerging area of research that can contribute insight into experiences of disease consequences. In this article, we give an overview of published work on survivors of infectious disease using both bioarchaeology and disability history. Using the example of post-polio paralysis, we propose a theoretical approach to the bioarchaeological study of infectious disease that is inclusive of the history of impairment and disability, which we refer to as a survivor lens. We structure this discussion through scaffolded questions that move through multiple levels of analysis: from the individual and relational to the drivers of cultural change. We argue that bioarchaeological research on past epidemics and pandemics that attends to morbidity and lasting impairment and disability can contribute to wider conversations about infectious disease and disability in the past and present. En général, les épidémies et les pandémies sont considérées en termes de morbidité et de mortalité, de susceptibilité et d’immunité, et de réponses sociales et d’impacts immédiats de l’événement épidémique. Moins d’attention est accordée aux conséquences à long terme pour les individus et les populations en termes de séquelles d’infections, telles que la cécité après la variole, la surdité due à la rubéole congénitale et la paralysie après la polio. Cette même tendance est observée lors de la pandémie de COVID-19. Il y a moins d’attention accordée au nombre de cas et de décès, aux questions d’immunité et d’impacts économiques au premier plan, et aux problèmes de santé à long terme ou chroniques des survivants de COVID-19 reçoivent. Une grande partie de la recherche existante sur les effets de ces séquelles de la maladie provient de la recherche sur les déficiences/handicaps. De plus, la bioarchéologie de la déficience/handicap est un domaine de recherche émergent qui peut contribuer à mieux comprendre les expériences des conséquences de maladie. Dans cet article, nous donnons un aperçu des travaux publiés sur les survivants de maladies infectieuses en utilisant à la fois la bioarchéologie et l’histoire du handicap. En utilisant l’exemple de la paralysie post-polio, nous proposons une approche théorique de l’étude bioarchéologique des maladies infectieuses qui inclut l’histoire de la déficience/handicap, que nous appelons une lentille de survivant. Nous structurons cette discussion à travers des questions échafaudées qui traversent de multiples niveaux d’analyse: de l’individu au relationnel, jusqu’au aux changements culturels. Nous soutenons que la recherche bioarchéologique sur les épidémies et pandémies historiques qui examine la morbidité et le handicap peut contribuer à des conversations plus larges sur les maladies infectieuses et le handicap au passé ainsi qu’au présent.

Fabricating spaces and knowledge: the Berlin-Dalldorf Municipal Asylum for “Feeble-Minded” Children (1880–1900)

PurposeThis paper has two purposes. One is to examine the ways mentally disabled children were disciplined and cared for in Berlin, Germany/Prussia, at the end of the 19th century, by considering the way the architecture of the asylum affected the practices within it. The second purpose is to examine the manner in which the practices at the Dalldorf Asylum, especially the administrative paperwork, fabricated and stabilized the medico-pedagogical category of “feeble-mindedness”.Design/methodology/approachThis paper engages with reflections on asylum architecture and its connection to disciplining bodies as shown in Disability History and linking these insights to recent scholarship from the field of Science and Technology Studies on the fabrication of knowledge through observation. Drawing on microhistory as methodology it examines the fabrication of “feeble-mindedness” with and within the Dalldorf Asylum, focusing on architecture and design as well as administrative practices.FindingsThe analysis of the asylum's architecture reveals how certain ideas of hygiene and control derived from 19th century psychiatry, along with personal attentiveness and individualized learning were incorporated into the building, creating the notion of a “feeble-minded child” as being simultaneously dangerous and in danger. The paper further shows how the professionals involved were struggling with diagnosing these children, further showcasing that the space as well as the categorization of children, oscillating between psychiatry and pedagogy, has to be understood as contested.Originality/valueThis paper engages findings on the disciplining structures organizing everyday life within the asylum with concepts of fabricating knowledge as central to science studies. The Dalldorf Asylum, the earliest state-funded asylum for mentally disabled children in Germany and largely understudied, is used as the main research object. A microhistorical approach allows to make visible the intricate yet mundane practices involved in stabilizing the category of “feeble-mindedness”.

“I Didn’t Know People With Disabilities Could Grow Up to Be Adults”: Disability History, Curriculum, and Identity in Special Education

The present qualitative interview study explored disability identity development, a unique aspect of identity, and its relationship to school and special education. Adults with disabilities ( n = 9) reflected on their schooling experiences in special education through a life history interview and semi-structured interview about their schooling experiences. The participants identified a lack of disability representation in curriculum, lack of connections to disability community, and lack of teachers and school community members as important factors to their sense of disconnection from disability identity and distancing themselves from their disability label during school. This study suggests the power and potential of special education to develop disability community and identity in students with disabilities. Implications for future research and practice are discussed.

Introduction

This chapter introduces the ways that The Mark of Slavery moves between experiences of disability in everyday enslaved life and the discursive relationship between racism and ableism forged in antebellum medicine, law, politics, and popular culture. The “new” disability history and, in particular, this field’s use of a social (as opposed to a medical) model of disability is central to the project of writing a disability history of slavery. Disability’s power to stigmatize derived from its relationship to abnormality and its ability to rationalize inequality hinged on one’s real or imagined proximity to it. As disability intertwined with the broader metalanguage of race in the antebellum years, it minimized or amplified specific qualities imagined as innate to whiteness or blackness, racializing and delimiting “normal” bodies.

Documenting Disability History in Western Pennsylvania

ABSTRACT Disability history is everyone's history. However, existing archival literature on disability focuses almost exclusively on issues of accessibility. Relatively little has been written on the challenges and opportunities present in strengthening disability history representation in archives. The author uses their experience as a contractor for a regional nonprofit to explore the nature of working with community members to strengthen disability history representation in archives and proposes documentation strategy as an ideal framework for such collaborations.