Women in Resistance–learning about Tabita Levantate

Carolina Alvarado, founder of Tabita Levantate, speaks about her work

On Tuesday, August 7, 2012 our delegation drove from Guatemala City to the town of Chimaltenango, where we met with Tabita Levantate, translated as Arise, Tabitha, a project of the Kaqchikel Presbyterian Church. Kaqchikel refers to an indigenous Mayan ethnic group, many of whom live in Chimaltenango. Our delegation first met with a man named Saul, who works at the Presbyterian Kaqchickel Church. Saul explained the mission of the Presbyterian Kaqchikel Church in a gentle and friendly manner. The Church was formed by widows and displaced orphans with an initial focus on “saving souls.” However, over time the church evolved into a forum for peace and reconciliation that “gathers spiritualities into events of life.”

Native Voices–Native Peoples’ Concepts of Health and Illness

My passion for disability rights advocacy emerged when I realized that disability intersects with all areas of life. One such angle of life that I am very interested in learning more about is health and health care. To be more specific, I am interested in exploring how to make information about health more accessible to people with disabilities as well as to people who have traditionally been outside the mainstream–whether due to race, ethnicity, immigrant and/or refugee status, sexuality, poverty, or other marginalizing factors. I want to learn how improving access to health information could give such groups a greater voice in advocating for their own wellbeing.

To explore options for achieving this goal, I recently visited the National Library of Medicine in Bethesda, Maryland. The National Library of Medicine is displaying an exhibit called Native Voices: Native Peoples’ Concepts of Health and Illness, that addresses these very issues. Native Voices is a compelling exhibit that features video interviews where Native Americans, Alaska Natives, and Native Hawaiians speak about wellness, illness, and cultural life, and how these three themes connect to one another. The exhibit also includes Native artifacts both historical and contemporary. I found this exhibit fascinating, and wanted to write a brief post sharing information about Native Voices as well as some of my favorite resources that convey Native Peoples’ perspectives.

To view the “Native Voices” Interviews online

National Library of Medicine. “Interviews–Meet Health Professional, Community Leaders, Traditional Healers, and others working to Improve the Health of Native Peoples.” Native Voices: Native Peoples’ Concepts of Health and Illness.
http://apps2.nlm.nih.gov/nativevoices/interviews/index.cfm. I stayed at the exhibit for an hour, and would have easily stayed all day if I had not discovered that all the video interviews were available online at this link. The interviews with Native peoples include perspectives from health professionals, community leaders, and traditional healers, and address five themes: Individual, Community, Nature, Tradition, and Healing.

Recommended novels by Native Authors that address themes present in Native Voices

1. Silko, Leslie Marmon. Ceremony. http://www.amazon.com/Ceremony-Penguin-Classics-Deluxe-Edition/dp/0143104918/ref=pd_sim_b_3 Tayo, a young man of mixed Native and Caucasian heritage, returns to his home on the Laguna Pueblo following his service in WWII. He is suffering from post-traumatic stress disorder and struggling to adapt to his once-familiar surroundings. Ceremony intersperses Tayo’s voice with perspectives from other Native peoples and folktales told in collective narration. The blending of these disparate voices yields a mesmerizing cyclical story. In fact, Leslie Marmon Silko’s writing so mesmerized novelist Susan Straight that she got lost on a road trip searching for a scene in Ceremony. 

For me, Ceremony also has great significance in conveying the emotional effects of internalized racial oppression. I am especially drawn to re-reading a monologue of Tayo’s where the reader can see his mind churning through this very concept. A few years ago, I wrote out this passage in calligraphy, and designed a collage where Tayo’s words were strewn around an antique map of the world as a means of showing the global pervasiveness of this damaging ideology. If people are interested, I would be happy to revise this artwork in my Etsy Store. Due to my love of reading, much of my visual art speaks to the power of language.

Unpacking health care and disability–understanding the Affordable Care Act and German Choc’s medical needs

The  23rd Conference of ASPE–the national organization with an exclusive focus on integrated employment for people with disabilities– coincided with the Supreme Court issuing its decision on the Affordable Care Act. Throughout Thursday June 28th, the Breakfast Buffet, Breakout Sessions, Awards Luncheon, and Exhibition Hall were abuzz with the question, how will the Supreme Court’s ruling affect Americans with disabilities?

Now that a few days have passed and the dust has settled, I would love to break it down for you here. It may sound strange, but my dream job involves translating convoluted policy  so that it is easily understandable to the people it affects the most.  In this post, I will discuss how three aspects of the Affordable Care Act –(1) the Individual Mandate, (2) Medicaid Expansion, and (3) Pre-existing Conditions–affect people with disabilities. Dorothy Parker once said, “brevity is the soul of wit,” and it is in her spirit that I will give a brief description of just these three elements and their impact on Americans with disabilities.

1. The Individual Mandate: all Americans are required to get Health Insurance by 2014, or they must pay a penalty. The Individual Mandate will provide coverage for Americans with disabilities who might have applied for one health care program, but are waiting for their health benefits from another program. For example, people with disabilities who receive Supplemental Security Disability Income (SSDI) must wait 24 months to become eligible for Medicare. Without the individual mandate, these individuals would likely lose their health insurance while waiting to become Medicare eligible, and experience difficulties getting new insurance because of their pre-existing conditions.

2. Medicaid Expansion:  states can choose to increase eligibility and coverage requirements for Medicaid, which is a federal and state funded program that awards health care to people with low-incomes and disabilities. For the states that expand Medicaid, Americans with disabilities that could not afford insurance under the individual mandate, would now be able to get insurance.

3. Pre-existing Conditions: people with disabilities who were denied coverage because of having a pre-existing condition such as their disability, will now be able to get health care. The Center for Disability Rights, Inc. notes, “more than 17 million children with pre-existing conditions will no longer be at risk of being denied coverage. In 2014, that protection will extend to anyone of any age with a pre-existing condition.”

As my brain wraps itself around these three updates, which foretell great news for the approximately 50 million (one in five) Americans with disabilities, I want to explore the health care story of the individual at the center of my blog–German Choc.  Yesterday when I was doing research for this post, I discovered a blog written by a man named Ben Sampson, who works in Guatemala as a Program Coordinator for Operation Groundswell. Ben met German Choc in November, 2011, and describes how a private security Guard hired by the Guatemalan Nickel Company shot German in 2009, in what was intended to be a fatal shot.

Incredibly, German survived, but the bullet wound severed German’s spinal cord, paralyzing him from the waist down. Ben states: “Subsequently placed in Guatemala’s underfunded public health system, Germán developed an ulcer and again would have almost certainly died,” but Transitions Foundation of Guatemala, a nonprofit organization dedicated to providing rehabilitation, education, and employment services to people with disabilities (described in my post on disability in the US and Guatemala), provided German with crucial care. German went on to spend the next 18 months in hospitals and rehabilitation centers in both Guatemala and El Salvador. He returned to his home in El Estor to encounter another loss–his wife had left him and their baby son. Now, German lives with his parents, the three of them caring for his son together.

German’s journey contrasted with the Affordable Care Act’s effects on American’s with disabilities, seems especially sad, but German is not tragic, the strength of his survival is extraordinary. Contrasting the two is my meditation on how groundbreaking news in American intersects with one man’s story in Guatemala.