Like many people in the disability community, I have been shocked by the recent one-sided media coverage of the upcoming closure of the State Supported Living Center (SSLC) here in Austin (including this, this, and this). I will have much more to say on this, but I wanted to address some key points first.
1) Make no mistake about it: the SSLC is an institution and institutions segregate people with disabilities by design. They are also part of a tangled history of marginalization, sterilization, eugenics, and what I would call a systematic erasure of a significant portion of the population and a denial of this kinship world.
2) Institutions are not an inevitable aspect of disability services. Indeed, as of 2011 there are 14 states that have no institutions for people with disabilities. This is not because these states have chosen to throw these individuals to the wolves; rather, they provide services to individuals in their communities.
3) In the landmark Olmstead v. L.C. ruling of 1999, the Supreme Court of the United States ruled in favor of community living. This decision asserted that Individuals with disabilities have the right to live in the least restrictive environment, dealing a decisive blow to the “unjustified isolation” of this population. Note that this happened 15 years ago. 15.
Although my current work focuses on disability in the United States, this is a relatively new development for me. Indeed, until very recently I assumed that my academic and research career would center on disability in international contexts, particularly in Latin America. This was more than an anthropological fetishizing of the other. Rather, my various research and volunteer experiences abroad had left no doubt that international disability rights was a pressing issue and that millions of people were suffering, pushed to the social, economic, and medical margins of our world.
It was with great curiosity, then, that I read a recent news blurb by Disability Rights International on the changing plight of people with disabilities residing in a Guatemala City psychiatric hospital. I conducted ethnographic fieldwork in Guatemala during the summers of 2009 and 2010, and was frankly shocked to see any coverage of disability issues in the country. To say that Guatemalan disability services are inadequate does not begin to describe the situation. Although a few grassroots efforts, such as the incredible Guatemalan Foundation for Children with Deafblindness – Alex, have been extremely successful in advocating for certain diagnostic populations, the broader disability climate is bleak. There are essentially no public special education programs in the country of over 15 million, leaving most children with disabilities in their families’ full-time care. Shunning and stigma are the norm, and I heard story after story of children being locked in their families’ homes or of formerly close families ripped apart, grandparents refusing to see their own grandchildren simply because they were born with disabilities. The fears of disability as or caused by contagion or resulting from medical disaster loomed large, complicated by woeful inadequacies in maternal and child health, widespread malnutrition, and restricted access to care. Although the underlying tone of marginalization and neglect was sadly familiar to my personal and professional experiences in the U.S., the scope of the problem fell into another category altogether. Continue reading
As a scholar and a sibling, I am deeply committed to producing work that is relevant to multiple communities, both applied and intellectual. I am, in fact, wholly unconvinced that there needs to be a split between the two. Over the course of my graduate career, I have found myself increasingly frustrated with the arcane language of my discipline, which necessarily closes many anthropological insights off from a general readership. Linguistic gatekeeping is alive and well, yet I’m not sure whom it serves. Must intellectual rigor be cloaked in indecipherable prose and demarcated clearly from real-world application? I’m not sold.
Anthropologist and disability scholar Rayna Rapp on the “academic-activist interface.”
“Be prepared to continually learn how to make your research and teaching resources more accessible” – Rayna Rapp