Spinal Cord Injury

These posts discuss Spinal Cord Injuries

Pushing Back Against Privilege & What is Funny?

This week, I attended a show featuring six standup comediennes  sponsored by a leading nonprofit whose mission is empowerment of Jewish women world-wide. The host opened the show with jokes poking fun at assumptions about Jews, which felt welcome in an inclusive environment where the majority of the audience was Jewish. But I felt uncomfortable when the humor turned into exclusive abelist jokes, meaning prejudiced against people with disabilities, where the punch lines were that people with disabilities are inferior to others.

 One of the opening comediennes made a joke about a man telling her she was smart “for a lady,” and she recounted how she offered the quick retort, “you are good at using tools for a Mongoloid.” Hearing this word was a truly unpleasant throwback–Mongoloid is an old, pejorative term for a person with Down Syndrome that is also racist because it refers to the eyelid shape of people from Asia. This so-called joke also reiterates Douglas Bayton’s thesis in “A History of Inequality in America” about the trickle down effect of an oppressed group being labeled “mentally disabled” as the ultimate insult.

My discomfort grew when the headliner made a joke calling her mother “retarded,” and then minimized it by saying “retarded is a technical medical classification.” However, her joke was not using the “r-word” as a medical classification, she was actually mocking her mother’s lack of technical savvy. Furthermore, the r-word is not a “technical medical classification” and is no longer even in The Diagnostic and Statistical Manual of Medical Disorders. The current technical medical term is Intellectual and/or Development Disability (I/DD). A profound response on why using the “r-word” is not edgy or witty as the comedienne intended, but instead is a hateful slur comes from self-advocate John Franklin Stephens’s open letter to Ann Coulter.

The headliner had another joke where she recounted being stood up on a date by a blind man, which included a ton of gags about how she asked him out because she felt sorry that “he couldn’t see how cute he was,” and she saw a future together where “he could never see her cellulite.” These jokes do not even make sense if you have spent any time around a person who is blind or has low-vision, because from such interactions you realize complex and creative workarounds for seeing without your eyes. These jokes are premised on the prejudiced idea that being blind and/or having low vision also means that a person is truly deficient: incapable of a sense of touch (feeling her cellulite) and lacking the social conditioning and feedback from others to recognize that he is attractive.

After the Comedy Show, I wanted to address why I found these jokes so appalling, and I talked to the headliner. At first, when I tried to explain the complex skills people who are blind/have low vision use to navigate their daily lives and why her joke made no sense, she jibed,  “so why did he stand me up?” I quickly realized she wasn’t interested in developing a more nuanced understanding of the lives of people with blindness/low-vision, so I got to the point told her that I found her jokes to be prejudiced and abelist. She agreed, and said with pride, “I am going to offend a lot of people with my comedy.”

I had to accept that she simply didn’t care, and was even proud of her prejudices, but I thought that the host organization, which aspires to empower Jewish women, should care that humor grounded in prejudice is not even remotely funny. What makes comedy funny is the joining together of ideas that reveal truisms and absurdities about the way we live. Jokes whose punch line is premised on a person of privilege mocking the vulnerability of a group of people, are not edgy or original or even funny because they cruelly and boringly reiterate the status quo. For example, during the 2013 Oscars, the online news outlet The Onion tweeted that the nine-year old star of The Beasts of The Southern Wild, Quvenzhané Wallis, was a “cunt.” There is nothing funny about exposing a young African American girl to how society objectifies and sexualizes her, as this response articulates.

The following day, I emailed the coordinator for the nonprofit organization sponsoring the event, outlining many of my thoughts here. The coordinator wrote a congenial response that emphasized that as the host of the show, she does not and cannot control the comediennes’ content. She added that comedy shows are spaces for irreverent and sometimes offensive material, and she knew that none of these comics intended to offend or degrade anyone. I was disappointed by the host’s response because I felt like she missed my point: that until the comediennes can delve deeper and recognize that marginalized people, including people with disabilities, are first and foremost people whose rich experiences that can be very funny but are not to be made fun of, they will never be truly funny.

My final guideline comes from the blog “Black Girl Dangerous,” which gives excellent advice on how to push back against privilege. I  regret giving the organization my money to attend the event, and in the future I want to make more informed choices about the nonprofits and entertainers I support. In closing, I would like to recommend some standup Comedians who jokes, unlike those I parsed above, are irreverent and funny:

1. Margaret Cho http://www.margaretcho.com/2009/10/28/stand-up-clips/

2. Hari Kondabolu http://www.harikondabolu.com/videos/

3. Maysoon Zayid goo.gl/hRk5W9

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New and Noteworthy: September is National Spinal Cord Injury & Hispanic National Heritage Month

September is nearly over, but I would like to highlight two important special interest months

1. Spinal Cord Injury Awareness Month  http://www.unitedspinal.org/september-is-national-spinal-cord-injury-awareness-month/

2. Hispanic Heritage Awareness Month http://www.hispanicheritagemonth.org/

A new journey for EdgyAmelia

Over time the focus of my blog EdgyAmelia has expanded outward from its initial vision. I started my blog as a forum to share information regarding disability rights connected to the story of German Chub Choc. This blog began as a counterpoint to my Etsy Store EdgyAmelia, where I sold crafts to raise funds that would enable German Chub Choc, a Mayan Q’eqchi human rights defender with a disability, to live more independently.

As my posts on EdgyAmelia increased, so did my interest in learning more about the forces that shaped German’s life. Now, I have the opportunity to put this interest into action. For the month of November, I will study Spanish at an Immersion School called La Esceula de la Montaña/the Mountain School, located in the mountainous coffee growing region Colomba. I will also contribute my expertise in library services as a volunteer at the Mountain School’s Community Library. I am excited to report that donations from the Racine Public Library and the Guatemalan Human Rights Commission (GHRC) will add 39 books to the Community Library.

Following my month at the Mountain School, I will test out my newfound abilities in Spanish in a professional environment at Transitions Foundation, an organization that provides comprehensive rehabilitative, educational and vocational services to Guatemalans with disabilities. My interest in Transitions Foundation was sparked when I learned that German Chub Choc underwent rehab there, and grew when I met Co-Director John Bell during my delegation with GHRC.

To explain how my time in Guatemala will affect EdgyAmelia:

  • I have put my Etsy Store  on hiatus until my return to the United States
  • I will continue to use my blog to share my experiences in Guatemala, with an emphasis on Guatemalans with disabilities framed against broader issues in the disability rights movement

Although I have paused my blog posts from my most recent trip to Guatemala on the Guatemala Human Rights Commission’s Women in Resistance Delegation due to planning for my upcoming trip, my remaining delegation posts are outlined and forthcoming. I look forward to sharing my remaining stories from the memorable week.

As I draw this post to a close, I would like to circle back to the individual who set my journey into motion. In the past two months, exciting updates to German’s story have occurred. One such development is the arrest of Mynor Padilla, the private security guard hired by the nickel mining company HudBay Minerals, who shot German in an unprovoked attack in 2009. A second update is the upcoming release of the documentary film, Defensora, which chronicles German and his community’s pursuit of justice for the harms HudBay Minerals inflicted upon them. The trailer and more information regarding Defensora are available at this link: http://www.indiegogo.com/defensora

Learn more about The Mountain School

http://www.escuelamontana.org/

Learn more about The Otto René Castillo Community Library

http://www.escuelamontana.org/our-projects/communitylibrary.html

Learn more about Transitions Foundation

http://transitionsfoundation.org/

Women in Resistance–Meeting Sandra Moran

After our meeting with ISMU, we traveled to Casa Artesana for a conversation and dinner with artist-activist Sandra Moran at Casa Aretsana. Casa Artesana is an artists’ collective, that includes an open-house and cafe, and is part of the umbrella organization Women’s Sector.

The name “Casa Artesana” is a wordplay on “artisan” and its Spanish meaning of (arte sana) “art heals.” After introducing herself, Sandra explained that Casa Artesana provides an important  outlet for Guatemalans’ energy and creativity, which will disappear if it is not channeled.

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The wall at Casa Artesana’s entrance reads: “Casa Artesana: House of Women. The house is open to diverse people for sharing life, the creative act, and transgression.”

Like so many of the activists we met, Sandra’s demeanor spoke to a deep inner wisdom stemming from her lived experience. Setting her apart though, was her emotive artistic energy, ever-present as she gave us a tour of Casa Artesana, and explained that the vibrant paintings adorning the walls were created by women incarcerated in Guatemala’s prison system. Many of these paintings had the common theme of maternity and pregnancy in prison.

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This painting on the wall of Casa Aretesana is a powerful visual testament to the experience of the painter as a woman pregnant in prison.

Sandra added that although there are organizations in Guatemala that aim to reform the prison system, which is controlled by current and former members of the military, Casa Artesana is the only organization that works with incarcerated women. Casa Artesana introduced art programs to incarcerated women in 2008.

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I love this painting, and seeing it on the walls of Casa Artesana felt like a special message linking disability and Guatemalan women’s rights. Mermaids are popular symbols for women with spinal cord injury, who feel like “landlocked mermaids.”

Casa Artesana also provides services to promote the economic self-sufficiency and wellbeing of the 1,2000 women in Guatemala’s 9 prisons. One such program is clothing donations, which give women materials to sew and sell handcrafts to other inmates and visitors.  Casa Artesana also advocates for improved living conditions in the prisons, and does political education trainings so that women will understand their rights, how the system works, and how to press charges for inhumane treatment. Casa Artesana has also established a phone line that women can use to call for help or make denouncements if they have been attacked or tortured.

Sandra continued that Casa Artesana is also working to establish separate prisons for women and men. She shared that many women of the women are from countries outside Guatemala, such as Venezuela and Colombia, and are charged with drug trafficking and organized crime. Although they participated in the crimes for which they are incarcerated, many times women were unwilling or unwitting victims who had been kidnapped or extorted.

In Guatemala’s prison system, some women wait for as long as six years to be sentenced. Children between the ages of 0-4 years old are allowed to stay with their mothers in prison. Casa Artesana takes care of children 4 years and older, identifying scholarships so that children are not sent to a “third-party” because most extended families of the incarcerated women are too poor support the children.

Following our tour of Casa Artesana, we sat with Sandra as she shared her own story with us. She is from Guatemala City, and joined the human rights movement at age fourteen. She attended the University of San Carlos in the 1980s, when violence against students was on the rise. She went into exile in Mexico and Canada to escape the violence. During her years in exile, she participated in solidarity work, developed her musical talents, and joined Canada’s women’s movement. After the signing of the Peace Accords, she returned to Guatemala City. Upon her return, she came out as a lesbian, and has been victimized because of her sexuality.

She has emerged as a leader in Guatemala’s women’s movement, and explained to us that she is “committed to understanding systems of oppression from different points of view.” She stated that, to create positive social change, activists must confront internalized beliefs of racism, homophobia, and other prejudices before addressing external systems of oppression. She insightfully commented that indigenous people are trying to re-value themselves against this external system, and are faced with an additional assault of structural violence that prevents them from valuing who they are.

Then, she opened the conversation up to us for questions, and we continued onto a dynamic conversation that spanned from the history of feminism to life for people with disabilities in Guatemala. Listening to Sandra share her breadth of knowledge regarding Guatemala’s history of social justice and observing the engaged flow of conversation from my fellow delegates, was immensely invigorating.

Sandra concluded our talk with the statement, “women are finding ways to confront the struggle, and we need to learn from the history of resistance.” She then abruptly grabbed her drum and sang a song titled “Mujer” (Woman).

Her rhythmic words and drumbeats reverberated in a profound way for each of us delegates. One delegate, a drummer, was deeply moved by Sandra’s performance, and told me she “had never heard anything like that before.” For me, Sandra’s song set to music our special week of “Women in Resistance.”

Sandra Moran drumming “Mujer”

Learn more about Sandra Moran and Casa Artesana

1. Moran, Sandra. “Mujer Maiz Mujer.” March 14, 2010. https://www.youtube.com/watch?v=b9no4r1NIXI This youtube video of Sandra Moran singing and drumming “Mujer Maiz Mujer” is a dynamic performance, but does not give justice to the vital energy that comes across in her real-life performance.

2. Moran, Sandra. “Sandra Moran about Casa Artesana.” June 14, 2011. http://www.youtube.com/watch?v=huNjSAP3XOc This youtube video shows Sandra Moran speaking in English about Casa Artesana’s founding.

3. Gonzalez, Elma. “Activist Shares Turbulent Past.” The Ithacan. April 4, 2011. http://theithacan.org/12009 This interview between Sandra Moran and a staff writer from Ithaca College’s newspaper the “Ithacan” gives a more detailed glimpse into the varied stages of Sandra’s life.

4. Alford-Jones, Kelsey. “A Grassroots Activist on the Frontlines of the Women’s Movement.” Peace x Peace Blog. March 23, 2011. http://www.peacexpeace.org/2011/03/a-grassroots-activist-on-the-frontlines-of-the-women-movement/ GHRC Director Kelsey Alford-Jones’s blog post describes Sandra Moran’s inspiring role as leader in Guatemala’s women’s movement.

Highlights from GHRC’s 30th Anniversary Celebration and Update on German Chub Choc

From Left to Right: Rob Mercatante introduces the Alice Zachman Human Rights Defender Award, which Sister Alice Zachman herself presents to Alvaro Sandoval Palencia and Antonio Reyes Romero for their inspiring demonstration of peaceful resistance in their communities against transnational mining corporations.

Thursday, September 27, 2012 was 30th Anniversary Celebration for the Guatemala Human Rights Commission (GHRC). GHRC is a nonprofit, nonpartisan, humanitarian organization that monitors, documents, and reports on the human rights situation in Guatemala, advocates for survivors of human rights abuses and works toward positive, systemic change in Guatemala.  GHRC is also the organization with whom I traveled to Guatemala on their annual “Women in Resistance” delegation. In the year since I have moved to Washington, DC, my awareness of the human rights situation in Guatemala and the tremendous scope of GHRC’s work has grown. Eager to express my appreciation for GHRC’s staunch solidarity and advocacy on behalf of Guatemalan human rights, and how the three staff members balance their intense work in two countries with tremendous expertise and kindness, I volunteered at the Celebration. I enjoyed meeting guests and connecting with friends and fellow supporters, all of whom “have Guatemala in their hearts.”

The Celebration culminated in the presentation of an award named for GHRC’s founder Sister Alice Zachman to Antonio Reyes Romero from San Jose del Golfo and Alvaro Sandoval Palencia from San Pedro Ayampuc. The two communities–San Jose and San Pedro–are engaged in peaceful resistance against the transnational mining corporations that threaten to take away their land and livelihood. Observing Tonno and Don Alvaro’s reactions to receiving the award from Sister Alice herself, was such a beautiful moment.

September 27, 2012 also marked the three year anniversary of the date that German Chub Choc, a Mayan Q’eqchi man from El Estor, was shot and paralyzed by a Mynor Padilla, a private security guard from HudBay Minerals and the date that Adolfo Ich Chamán, a community member from El Estor was brutally murdered.  A candle lighting ceremony took place in Guatemala City to commemorate Adolfo Ich on the evening of September 27th. Throughout the day, German Chub was on my mind, and having learned from people who have Spinal Cord Injuries that the anniversary of the injury date churns up strong emotions, I wondered how he was feeling on September 27th.

My concern and curiosity about German Chub’s feelings was met with an exciting update at the 30th Anniversary Celebration. Among the many supporters of Guatemalan human rights present at the Celebration was Annie Bird, Co-Director of Rights Action, the organization that raised funds to build German’s store and is now gathering donations to purchase land and a wheelchair accessible home for German’s family. Annie told me that on Wednesday, September 26, 2012, authorities had arrested Mynor Padilla, the former chief of security of the mine, for Adolfo Ich Chamán’s murder and the attempted murder of German Chub!

To share more about this news and what it portends for German Chub’s lawsuit against the mine, Rights Action has published a press release from KLIPPENSTEINS Barristers & Solicitors, the law firm representing Adolfo Ich’s widow and German Chub in their law suit against HudBay Minerals. I have copied and pasted the press release, published on September 28, 2012 below.

In James Rodriguez’s photograph from The Peoples’ International Health Tribunal, German Chub Choc declares: ““My life has changed completely, it is very difficult. But I will not give up. And above all, I will not remain silent about what happened to me.”

CHIEF OF SECURITY AT CANADIAN MINING COMPANY HUDBAY MINERALS’ GUATEMALAN MINE ARRESTED FOR MURDERING MAYAN COMMUNITY LEADER

Toronto, Canada: Almost three years to the day after the brutal slaying of community leader Adolfo Ich at Hudbay Minerals’ mining project in Guatemala, Guatemalan authorities finally arrested the former chief of security of the mine, Mynor Padilla, on charges of murder and attempted murder.

While this is an important first step towards justice for Mayan communities harmed by Hudbay’s mining project, Hudbay has not yet been held to account and Canadian human rights lawsuits against Hudbay over the same allegations continue in Ontario courts.

“Astonishingly, Hudbay continues to argue that mine personnel were not involved in the murder, despite the fact that the brutal attack happened in broad daylight in front of witnesses who say Mr. Padilla was at the centre of an attack committed by a dozen mine security personnel,” said Murray Klippenstein, Canadian lawyer for Mr. Ich’s widow.

“It is time for Hudbay to own up to what happened on its watch at its mining project. Now that the man that Hudbay allowed to be put in charge of security has been arrested for murder, we hope Hudbay changes its unsupportable position, makes amends, and takes real, concrete steps to ensure that similar severe human rights abuses never again are committed at one of its projects.”

It is alleged that Mr. Padilla was on duty as chief of security at the Canadian controlled mine when he, together with other security personnel, surrounded, beat, hacked and finally shot Mr. Ich in the head in an unprovoked attack.  On the same day, Mr. Padilla is also alleged to have shot and paralyzed German Chub in a similar unprovoked attack.  Shockingly, Hudbay has confirmed that its subsidiary continued to employ and pay Mr. Padilla for at least a year after the murder while he was a fugitive from justice.

Hudbay continues to face three related corporate accountability lawsuits in Ontario courts which allege that poor management and oversight by Hudbay and its predecessor corporation led to the killing of Mr. Ich, the shooting of Mr. Chub, and the gang rapes of 13 Mayan women committed by mine company personnel at the Canadian owned and controlled mine.

“We hope that Mr. Padilla is swiftly brought to justice,” said Mr. Klippenstein.  “But as a Canadian company, HudBay still needs to answer in Canadian courts the allegations of human rights abuse at its mines.”

The first major hearing in the Canadian lawsuits is expected in March 2013.

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Learn more about the Guatemala Human Rights Commission and the 30th Anniversary Celebration

1. Guatemala Human Rights Commission/USA. September 29, 2012. http://www.ghrc-usa.org/

2. Guatemala Human Rights Updates. September 29, 2012. http://ghrcusa.wordpress.com/

Learn more about the peaceful resistance efforts in San Jose del Golfo and San Pedro Ayampuc

1. “Winner of 2012 Alice Zachmann Human Rights Defender Award Announced.” Guatemala Human Rights Updates. September 17, 2012. http://ghrcusa.wordpress.com/2012/09/17/winner-of-2012-alice-zachmann-human-rights-defender-award-announced/

2. Rodriguez, James. “2012-05. Third Month of Resistance Against a Radius Gold-owned Mine in Guatemala.” MiMundo.org. June 4, 2012. http://www.mimundo.org/2012/06/04/2012-05-third-month-of-resistance-against-a-radius-gold-owned-mine-in-guatemala/

Learn More about German Choc, Adolfo Ich, and the lawsuits against HudBay Minerals

1. Klippensteins, Barristers & Solicitors. Choc v. HudBay Minerals Inc. & Caal v. HudBay Minerals Inc. September 29, 2012. www.chocversushudbay.com This link is to the official website of the three lawsuits–for Adolfo Ich’s murder, German Chub’s attempted murder, and the gang rape of 11 women from Lote Ocho against CGN, the Guatemalan subsidiary of HudBay Minerals.

2. Rodrigues, James. “2012-09. In Memoriam: Adolfo Ich Chamán.” MiMundo.org. September 27, 2012. http://www.mimundo.org/2012/09/27/2012-09-in-memoriam-adolfo-ich-chaman/ This moving two-minute slide show commemorating Adolfo Ich is set to music played by Adolfo Ich himself. The Ich-Choc family provided the audio file to MiMundo.org.

3. Rodrigues, James. “2012-07-14. The Peoples’ International Health Tribunal: San Miguel Ixtahuacán 2012.” July 14, 2012. http://www.mimundo.org/2012/07/14/2012-07-14-the-peoples%E2%80%99-international-health-tribunal-in-images/ This powerful photoessay from MiMundo.org provides powerful visual coverage of German Chub along with a delegation from El Estor speaking out at The People’s International Health Tribunal about the atrocities suffered at the hands of CGN, the subsidiary of HudBay Minerals.

4. Schmidt, Rachel, Adele Hinkley, and Lee K. Toepfer. Defensora. http://www.indiegogo.com/defensora The upcoming documentary film”Defensora” documents the struggle of Mayan Qeqchi peoples in El Estor to reclaim their ancestral lands, to promote community development and environmental well-being, and to seek justice and remedy for the murder, shootings and rapes that HudBay Minerals committed. This link to the five-minute trailer is very powerful, and features German Choc speaking about his reasons for pursuing the lawsuit.

Living with Spinal Cord Injury

Now that I have written eleven posts, a few themes have emerged. I feel most confident writing about disability rights issues because of my expertise in disability policy and advocacy. I feel most nervous writing about Guatemala and Guatemalans, not only because of my lack of knowledge but because I worry that I could misrepresent the complex stories of an entire country made up of approximately 14,757,316 people. I worry that my descriptions of painful histories of violence and persecution do not give enough credit to the resiliency and courage of the Guatemalan people.  For similar reasons, I have felt hesitant to write about another group who has a suffered great physical and emotional pain, and has persevered with tremendous tenacity–people living with spinal cord injuries.

Prior to researching funding opportunities for German Choc, I did not know much about spinal cord injury beyond its basic definition. According to the U.S. National Library of Medicine, “spinal cord injury can be caused by any number of injuries to the spine, ranging from motor vehicle accidents, falls, sports injuries (particularly diving into shallow water), industrial accidents, gunshot wounds, assault, and other causes. The symptoms of a spinal cord injury are weakness and sensory loss at and below the point of the injury.”

If a person has a “complete” injury, he or she will have no sensation or ability to move at or below the injury, but if the injury is “incomplete,” the person will have some sensation or ability to move at or above the point of injury. This fact means that people with spinal cord injuries could be injured at the same level of vertebrae, yet experience great differences in their abilities to experience sensation and/or movement. I do not know whether German Choc’s injury is complete or incomplete, I simply know that he is paralyzed from the waist down when he was shot in the spine. His injury could be at the thoracic (chest) level or lumbar sacral (lower back) level.

Recently, I have had the opportunity to learn more about German Choc and how I could better advocate for funding his health needs. I have been corresponding with John Bell, who is the co-founder and Director of Transitions Foundation of Guatemala, which provides holistic health, rehabilitation, education, and job training services to Guatemalans with disabilities. John Bell and German Choc became friends while German was undergoing rehabilitation at Transitions. German needs several items for his medical and personal care, and this list is linked in the first Source Note.

In addition to learning more about German Choc’s spinal cord injury, I have discovered the diverse and vibrant virtual community of people with spinal cord injuries in the United States.  One of my favorite things about the disability rights movement is how technology includes and connects people who have traditionally been excluded, and the Internet is teeming with social mentoring networks, blogs, podcasts, and video archives where the spinal cord injury community convenes, shares stories, and motivates one another.

Present in the spirit of shared stories is humor, and  Teal Sherer, an actress with paraplegia has created  “My Gimpy Life,”  a webseries detailing her “awkward adventures as a driven actress trying to navigate Hollywood in a wheelchair.” The first episode “Accessible” debuted on July 31, 2012,  and it is linked in the Source Notes below for your amusement. Enjoy!

Source Notes

1. “Spinal cord trauma.” U.S. National Library of Medicine. June 16, 2010. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002061/

2.  Russell, Grahame and Annie Bird. “Special Fundraising Appeal–Health needs and Family Store for German Chub Choc.” Rights Action. November 16, 2011 http://www.rightsaction.org/action-content/special-fund-raising-appeal-health-needs-family-store-german-chub-choc 

3. Spinal Cord Injury Information Pages: Quadriplegic, Paraplegic & Caregiver Resources. http://www.sci-info-pages.com/

4. New Mobility. http://www.newmobility.com/index.cfm

5. “My Gimpy Life.” Youtube. 2012.  http://www.youtube.com/user/MyGimpyLife

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.

German Choc’s Store–Supplying social capital and inclusion

As I wrote in my previous post, I attended the 23rd annual ASPE Conference in Arlington, Virginia from Wednesday, June 27 through Friday, June 29th. ASPE is the only national organization that exclusively focuses on integrated employment and career advancement for individuals with disabilities. ASPE concentrates on Americans with developmental disabilities,  which are physical and/or mental disabilities that occur before a person is eighteen years old. But despite the difference in geographic location and nature of German Choc’s disability compared with the focus of the Conference, I learned so much information at ASPE relevant to his employment situation.

In the United States, most people with disabilities are employed in sectors involving “food, flowers, filth, and folding,” what ASPE refers to as the Four Fs. People with disabilities are also twice as likely to be self-employed as the general population, which offers advantages, but can also add to the isolation and feelings of loneliness that many people with disabilities experience. Amidst these facts, raising funds for German Choc’s family-neighborhood store stands out as an incredible example of integrated employment in Guatemala, where only 2-4% of people with disabilities are employed.

German Choc at his home in El Estor, Guatemala

To describe the plans for German Choc’s store and what your contributions can help create: German and his family will build a small  corner store on family property. The store will have wooden framing, floors, doors, walls, and shutters. It will have tin roofing and shelves, and contain a refrigerator and small freezer. The store will  be wheelchair accessible with a large open front, ramps, and counter so that German will be able to fully operate the store.

This description of a corner store in the rural Guatemalan region El Estor seems small, yet this store will set off a domino effect of community transactions that cannot be quantified. Owning and operating a store will give German Choc an important role in his community, one where he has regular contact with people, thereby avoiding the isolation that many people with disabilities experience. As a store owner, German will not just be included, but also have a respected role, one where other community members will rely on him for the items the store sells. From this perspective, contributing funds to the construction of a small corner store has a priceless return on investment in social capital and social inclusion.

The creation of German Choc’s store also speaks to a key principle in the Disability Rights Movement known as Person Centered Planning. Person Centered Planning gives people with disabilities the power to define the direction of their lives based on what they want for themselves, not on what services are available to them.  Person Centered Planning is a process where  family, friends, and members of the community come together to support the person with a disability in developing a life-plan based on the person’s identified interests and goals. The process of building German’s store incorporates Person Centered Planning from the earliest stages of its inception. German, his family, and local community leaders came together to prepare the store’s full budget, which if you are interested, is available to view on request to Rights Action.

I will sum up my post with words from ASPE’s closing Keynote Speaker Sharon Lewis, Commissioner of the Administration on Developmental Disabilities. Her words apply just as much to explaining the value of contributing funds to German Choc’s store as they do to Americans with Developmental Disabilities.”Integrated employment enables people with disabilities to expand social relationships and build self-worth and social capital. When people with disabilities are contributing members of their community, we are all the better for it, and anything less is irresponsible and disrespectful.”