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.
I recall stopping in at a rural home one afternoon with a special educator from the capital, and our shock to find the family’s adult son with cerebral palsy locked inside of the dark wooden structure. His mother had gone to the river to wash clothes and had no alternative but to leave her son there, resting in the midday heat, his skin sticking to the thick black garbage bag she had carefully placed over his mattress to keep urine and sweat at bay. I recall meeting a young boy of maybe eight or 10 at a private educational center in a mountain city. His parents had left him at a local nursing home at a young child and were perhaps working in the U.S. by this point. His teachers still marveled at his excitement upon starting at the school, several years back. He had never played with other children before.
What is difficult to convey is that these are the good stories, the ones that convey hope, love, and some semblance of possibility. Given the near total lack of resources and institutional supports for people with disabilities and their families in Guatemala, it is no surprise the abandonment was a common theme during my summers there. I visited shelters that overflowed with individuals of all ages who were left by their families, typically as children. One stands out in my mind as an assembly line of basic human needs. The nurses would rush, one by one, maybe two nurses to a room of 30 youngsters, feeding the children a milky substance through bottle-sized syringes. The children were not babies, yet many spent their days in oversized cribs. When it was time to move to the patio, staff draped them haphazardly with mosquito netting. As a sibling of a woman with disabilities, I simply couldn’t handle it. It was too close too home, little more than an extreme form of the embodied world of marginalization I had witnessed since childhood.
During my research periods, I learned of Guatemalans with disabilities living in some of the country’s mental health facilities. These residents were said to live alongside patients with mental illness, but violent criminals were included in the mix, people told me with knowing looks. The scene was said to be rife with abuse of all sorts.
With this knowledge, I read about Disability Rights International’s work in Guatemala with both interest and skepticism. The organization’s website proudly displays the new Accord between the country’s government, representatives from DRI, and the Human Rights Office of the Archdiocese of Guatemala. The document makes a bold promise: the Guatemalan government will begin to protect the rights of people with disabilities and mental illness living in the National Mental Health Hospital. Moreover, it will work toward a future of community integration for these populations, and will create and ultimately fund pilot programs to meet this goal. It will establish 10 group homes in which at least one-third of residents will have intellectual disabilities. Significantly, the Hospital will no longer accept children with disabilities. The government will establish community programs to meet the needs of families, with the goal of giving them the support necessary to care for their children’s diverse needs, medical and otherwise. Reading, I am nothing short of shocked.
This is a beautiful plan. It really is. But I struggle to believe it. In fact, I am still stuck on the fact that Guatemala both signed and ratified the U.N. Convention on the Rights of Persons with Disabilities, something that my own country’s government has not yet brought itself to do. (It is curious to consider the relationship between certain U.S. Senators’ opposition to the CRPD and their own track records voting against women’s and children’s health programs, reproductive choice, and educational, health care, and social service funding, and often supporting violent international interventions in faraway lands that leave military and civilian populations with emotional and physical scars.) Is it possible that the disability climate in Guatemala has changed this much since my last trip there in 2011? Should I overlook my own nagging doubts that any official accords or conditions are essentially meaningless in a space where abjection and marginalization are the rule and not the exception for people with disabilities? Perhaps I should simply swallow my memories and accept that this is how change happens. But I can’t.
Make no mistake: I commend the work DRI. The have made critical contributions to the human rights of disability populations around the world, addressing the insidious linkages between suffering, difference, and political economy on a global scale. They have also pushed this conversation into the mainstream press, raising awareness through pieces in the New York Times (here and here) and the Washington Post, to name a few. But this will not solve the problem. Those of us with knowledge about the truly unbelievable conditions facing people with disabilities both at home and abroad must share our stories. As academics, advocates, allies, caregivers, or others in this broad community, I would argue that we have an ethical imperative to speak up. I am often shocked when people express an interest in my research. Perhaps I am just being bashful. On some level, this might reflect my internalized pressure as a sibling to eschew attention and try at all costs to blend in. Maybe Goffman was right and it’s about spoiled identities, after all.
This is a lengthy prologue to a few upcoming pieces. With some trepidation, I have decided to share excerpts from my reflections from my research in Guatemala. These are several years old now. They reflect an earlier stage in my work and thinking, and are flush with both emotion and detachment as I attempt to sort through local worlds and registers of disability. These writings are partial, emotional, and alive, and they make no claims to anything but empirical authority over scenes I witness. Still, they betray a rawness that offsets the dry language of policy and aid, and a carnality that complicates hope for quick fixes and pretty futures. They are real in that really real sense, steeped in the everyday rhythms of a suffering that is both localized and sadly recognizable.