Disability at the Margins: The Case of Guatemala

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