by Faye Ginsburg and Rayna Rapp
Department of Anthropology & Center for Disability Studies, New York University

In the spirit of this blog’s dedication to “disability histories for the present,” we use this post to reflect on the future of disability publics in the United States, more than a quarter century after the passage of the Americans with Disabilities Act (ADA) in 1990, and in the wake of the 2016 election of Donald Trump to the presidency. As groundbreaking legislation, the ADA was necessary but not sufficient to undergird the actual transformations required for people with disabilities to be fully recognized as American citizens, whether in schools, movie theaters, on the internet, or in the voting booth.

In a 2016 essay inaugurating Disability, a series of weekly essays in The New York Times written by and about people living with disabilities, scholar-activist Rosemarie Garland Thomson wrote about the expansion in numbers and recognition of people with disabilities, pointing out that “disability is everywhere once you start noticing it.”
The National Organization on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the United States, and as new disability categories such as neurodiversity, psychiatric disabilities, disabilities of aging and learning disabilities emerge and grow, so does that percentage.
(Garland-Thomson 2016, p. SR1)
Given these numbers – moving toward 20% of the population – we were excited when disability activists launched two remarkable nonpartisan efforts to get the 2016 presidential candidates to talk about issues relevant to this community for the first time in American history. Using the reach of social media, the Twitter campaign #cripthevote engaged voters and encouraged politicians to have a national conversation about disability rights. Additionally, Washington D.C. based disability activists launched RespectAbility, another initiative to get candidates to address disability issues. Both groups underscored the potential power of the disability vote in America.

A study by U.S. political scientists Lisa Schur and Doug Krause, well-known for their work on disability, law and social policy, projected that roughly one-sixth of the electorate, more than 35 million people with disabilities out of 56 million total were eligible to vote this year. This was heartening but not surprising. What WAS surprising was that these voters for whom disability is a central concern, identified almost equally with the two major political parties (Schur and Krause 2016). Given the stark contrast between the Clinton and Trump campaigns around disability issues, we nonetheless assumed, along with many others, that the disability vote would indeed rally for Clinton, whose policy recommendations addressed areas of key importance to this constituency. This was in sharp distinction to the lack of any interest in the issue on the part of Trump, as well as his disgraceful behavior at a November 2015 rally when he mocked the atypical gestures and shortened arms of The New York Times reporter Serge Kovaleski, who has arthrogryposis. This was the most widely condemned of all Trump’s many insults during the long and nasty campaign season. Moreover, he continued to be silent on disability issues and policy proposals throughout his campaign. In contrast, in June 2016, Priorities USA ran a pro-Clinton ad in which Dante Lachtman, a seventeen-year-old African American cancer survivor with a limp watches Trump’s mocking behavior on TV, then speaks to the viewer, saying : “I don’t want a president who makes fun of me, I want a president who inspires me. That’s not Donald Trump”. 


Leprosy, Heritage, and Art: Histories of Exile in a World Perspective

By Patrick Devlieger

Leprosy is an ancient disease that pertains to most all regions of the world at some point in time. In the Western context, it may be a disease of the far or recent past, while in some countries in Asia and Africa, the disease has still a lot of currency. Nowadays, the world seems to be starkly divided between parts of the world where it is mostly forgotten and a shame if it could not be forgotten. Away from the daily experience, leprosy becomes metaphorical, to refer to something repugnant. The dominant medical discourse is one that pertains to its final extermination, its disappearance, and to relegating the disease to the past. In this blog entry, I wish to evaluate some of the actors that pertain to preserving the history and legacy of leprosy, which leads me in the direction of colonial governance, religion, and especially the arts. Throughout the world, the recent history over the past 150 years can hardly be seen outside the colonial context, its governmental policies of segregation, the response of religions, and the arts. The modern context, according to Michel Foucault, established a relation between knowledge and the legitimation to remove people outside the society. Perhaps more than anything else, it is the arts that have an enduring impact on the way of remembering leprosy, and that capture most the weight of history and the enduring impact of its heritage. While medicine attempts to the disappearance, the arts continue to capture and challenge its existence.

Throughout the world, segregation practices were implemented in the 19 th century. They were quite different from the practices of medieval times that required that people with leprosy announced their presence with a clapper or a bell, before leper houses were established. One chronicler in the 13th century calculated the existence of some 12000 leper houses throughout Europe, for care and quarantine, and these were organized like convents and monasteries (Ashworth 2010). The segregation practices of the 19 th century included the exile of people with leprosy to islands or otherwise isolated areas, in the context of nations states and colonization. Famous examples are Kalaupapa, Sorok Island, Robben Island, and otherwise isolated areas such as the remote villages in China’s southwest, or some remote valleys, such as the Hemel en Aarde Vallei in South Africa’s Western Cape Province, or Anandwan in Maharashtra, India, or Yonda Leprosy Settlement in the Democratic Republic Congo. Such places were often places of heroic collaboration between government and Christian churches, but in some cases like Anandwan, also the ground of non-religious heroism. Its heroism however is always one of service.