Disability Rights

These posts are about disability rights, the pursuit of equity, opportunity, and inclusion for people with disabilities.

Remembering Ki’tay Davidson

Although I have returned from my trip to Guatemala a more than one month ago, mentally, my time there feels much more distant. Caught up in my hectic life, I truly have to pause and really think deeply to summon the memories of a simpler, special time. Yet, when I was there, I had many moments where I found myself wishing I could be back in the United States.

My attention was mostly straying to the political–wishing I could participate in protests against the lack of indictment for Daniel Pantaleo, the officer responsible for killing Eric Garner, actions demanding justice for the 43 students murdered in Ayotzinapa, Mexico, and especially in actions that linked these two tragedies together due to their state-sponsored violence.

My feelings of homesickness shifted from the political to the personal when I learned that Ki’tay Davis had passed away. Ki’tay was someone I admired from afar at disability rights events, and looked forward to getting to know better this year. I am so saddened that I will not have the opportunity to do so.

Reading Ki’tay’s post on Black Girl Dangerous “Angry About the White Lesbians Suing For Having A Black Child? You’re Missing Something” and Lydia Brown’s heartfelt tribute to “one of the most awesome people who ever happened to me” on Autistic HoyaI so appreciate his talents at effectively advocating for justice with people at the intersections of race, sexuality, and disability. I want to express most sincere, albeit far too belated, condolences to his loved ones for an awesome person who I wish had happened to more of us.


New and Noteworthy–Justification of Inequality

1. This past week, Katie Couric interviewed trans model Carmen Carrera and actress Laverne Cox. When Katie expressed her voyeuristic curiosity about the women’s transitions, they both responded with eloquence and grace about why her questioning was inappropriate.  Colorlines. “Laverne Cox remembers Islan Nettles while Schooling Katie Couric.” January 7. 2014. http://bit.ly/19ZXgZo

2. Last week, I participated in a training on Disability Justice, and re-read this “oldie but goodie” staple of the disability rights movement. This essay fits in well with the above interview, because Douglas Bayton describes how the belief that oppressed groups are disabled has been a reason for their exclusion throughout history, and sadly a counter response has involved the oppressed group insisting that they are not disabled, not denying that disability is a valid basis for exclusion.  Baynton, Douglas C. “Disability and the Justification of Inequality in American History.” 2001. http://www.disabilitymuseum.org/dhm/edu/essay.html?id=70 

3. The radio show Democracy Now! dedicated an episode to exploring the life and legacy to Amiri Baraka, a poet, playwright, and political activist, who passed away on January 9, 2014. Amiri Baraka started the Black Arts Movement, and in the 1960s the FBI identified him as “”the person who will probably emerge as the leader of the pan-African movement in the United States.”  Democracy Now! “Amiri Baraka (1934-2014): Poet-Playwright-Activist Who Shaped Revolutionary Politics, Black Culture.” January 10, 2014. http://www.democracynow.org/2014/1/10/amiri_baraka_1934_2014_poet_playwright?autostart=true


Correction/Reflection on August 21, 2014–re-reading this post, I’m confused about why I included the tribute to Amiri Baraka with the other two topics, and even more irritated at myself that I had misspelled his name. I wonder what I was thinking–it seems more than a little “one of these things is different than the others” since Amiri Baraka was a virtuoso who used his considerable talent in progress toward equity via the Black Arts Movement. I think I probably just wanted to write about Amiri Baraka, and I will in a future post. For now, here is Questlove’s (drummer for The Roots) tribute to Amiri Baraka in the New York Times. 

New and Noteworthy: Awesome blogs from my friends & Defensora debut

The Blogs

1. The Guatemala Human Rights Commission (GHRC) visits a Qanjobal community in Omaha, NE: http://ghrcusa.wordpress.com/2013/08/14/ghrc-visits-qanjobal-community-in-omaha-ne/

2. The Health Equity and Policy Blog: http://healthequityandpolicy.blogspot.com/

3. Feminist Collective Blog: http://disruptingdinnerparties.com/

4. Two Disability Rights Blogs: Claiming Crip: http://claimingcrip.blogspot.com/ and Dealing with Dyautonomia: http://dealingwithdys.blogspot.com.au/  are written by my two talented friends who interned with AAPD (American Association of People with Disabilities) this summer, and share their thoughts on disability theory, rights, and policies as well as their personal experiences.

Defensora Debuts in the US

The Documentary Defensora, about the Mayan Q’eqchi’ community El Estor’s resistance against mining in Guatemala, debuts in the United States. The link to the Defensora website is here: http://www.defensorathefilm.com/ and my pots tagged German Chub Choc detail the awe-inspiring courage of the El Estor Community with a focus on German Chub Choc, a Mayan Q’eqchi man who sustained a spinal cord injury after he was shot in an unprovoked attack by a security guard from HudBay Minerals.

New and Noteworthy: Steps to justice in El Estor, ADA turns 26, and interacting with people with disabilities

1.  Canadian Mining Company HudBay Minerals will be tried in Canadian courts for murdering, shooting, and gang-raping Guatemalans http://www.rightsaction.org/action-content/media-reports-precedent-setting-ruling-canada-against-hudbay-minerals-indigenous and http://www.chocversushudbay.com/ My posts tagged German Choc describe how the Guatemalan community El Estor was brutalized by the Canadian mining company HudBay Minerals. Between 2007 and 2009, eleven women from the town of Lote 8 were gang raped, community leader Adolfo Ich Chaman was murdered, and German Chub Choc was shot in an unprovoked attack. Since these attacks, German Chub Choc; Adolfo’s widow Angelica Choc; community leader Maria Choc; and Rosa Elbria Ich Choc and Margarita Caal Caal, two representatives from Lote 8 formed a delegation to seek justice against HudBay in the Canadian legal system. I am so happy to report that as declared on Tuesday, July 23rd, their case against HudBay will proceed to trial in Canada!

2. Americans with Disabilities Act (ADA) turned 23 goo.gl/nFrVfT AAPD (American Association for Persons with Disabilities) 2013 Interns produced this YouTube video explaining how the ADA has affected their lives.

3. Excellent Journalist Tiffiny Carlson gives an articulate explanation of 10 ways to interact with people with disabilities http://www.themobilityresource.com/10-correct-ways-to-interact-with-people-with-disabilities/ Tiffiny’s list is great, and I couldn’t agree more with Number 10 “the golden rule.” A few years ago, I was at the Association for Blind Citizen’s Holiday Party, having a great time meeting and chatting with folks with and without sight, but when two blind acquaintances started walking toward each other each unaware of each other’s presence, I became tongue-tied, unable to say the simplest thing to let them know each other was there because I was wracking my brain for the right thing to say to prevent them from bumping into each other. As they both came to a stop, aware of each other when their canes touched, I awkwardly asked, “so what do I say when I see someone blind about to bump into someone or something? Both people turned to look at me and said, “you can say stop.‘”

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


Learn more about The Otto René Castillo Community Library


Learn more about Transitions Foundation


The Convention on Rights of Persons with Disabilities–United States and Guatemala

The United Nations Convention for Persons with Disabilities  (CRPD) is the first international treaty to address disability rights globally.    The CRPD outlines countries’ responsibilities to promote and protect the rights of people with disabilities.

David Morissey, Director of the United States International Council on Disability, defines The Convention as “the intersection of disability and human rights, necessary for protecting the rights of the world’s most vulnerable.” As of May 2012, the Convention has 153 signatories and 112 ratifications. Australia, Canada, Mexico, New Zealand, South Korea, and many countries in Europe have ratified the Convention

What’s going on in the United States?

How might the Convention be used to protect people with disabilities in the United States? The United States has already established strong support for the rights of people with disabilities through the Americans with Disabilities Act (ADA), but the CRPD ratification and subsequent implementation would protect the rights of Americans disabilities living and traveling abroad, and address the essential rights of people with disabilities from a global rather than domestic perspective.

July 30 – August 2, 2012

The CRPD will move to the full Senate floor. The CRPD needs a 2/3 vote to be ratified. The United States Disability community is urging people to show their support of the treaty so that the CRPD will get time on the Senate floor before the recess begins on August 3rd. Disability advocates urge people to call, email, and visit their Senate offices, Tweet #CRPD, and send Facebook messages that proclaim support for the CRPD.

July 26, 2012

On the 22nd anniversary of the Americans with Disabilities Act,  the Senate Foreign Relations Committee and Chairman John Kerry passed a resolution of advice and consent to the CRPD.  The resolution was amended and passed with a bi-partisan vote of 13 to 6.

July 12, 2012   Senate Foreign Relations Committee Hearing

You can watch the hearing, which begins at 9 am EST live at the US Senate by clicking on this link.  In the United States, support of the CRPD is needed to bring about its ratification.

The United States International Council on Disability has a form letter available for individuals and organizations to sign to show that Americans support the CRDP’s ratification. The link to the form letter is available here.

May 2012  Consideration for Ratification

U.S. ratification of the Convention requires a “resolution of ratification,” which means 2/3 support or a 67 supermajority vote is needed in Senate. In May, the Obama Administration transmitted the CRPD to the Senate for consideration of ratification.

 July 30, 2009 Signing

The United States signed the Convention on the Rights of Persons with Disabilities (CRPD).

What’s going on in Guatemala?

April 2009 Ratification

After ratification, the  Guatemala Government  designated the National Council for the Care of Persons with Disabilities (CONADI) as the government agency responsible for addressing issues relating to CRPD compliance and implementation. Although ratified, the CRPD is not yet implemented.

March 2007 Signing

The CRPD was signed into law.

Source Notes

1. (2012). The United States International Council on Disability. “The Convention on the Rights of Persons with Disabilities.” http://www.usicd.org/index.cfm/convention

2. (2012). The United States International Council on Disability. “CRPD Education and Advocacy.” http://www.usicd.org/index.cfm/crpd

3. (2012).  Transitions Foundation of Guatemala. “Need.” http://transitionsfoundation.org/index.php/en/need

4. (2012).  United Nations Enable. “Convention on the Rights of Persons with Disabilities.” http://www.un.org/disabilities/default.asp?navid=14&pid=150

5. (2006). Disabled Peoples’ International. “Implementation Toolkit.”  http://www.icrpd.net/implementation/en/toolkit/section1.htm

German Choc is a human rights defender-intersectional identities

A few nights ago, I was talking to my friend about my fundraising project. My friend works at the Guatemalan Human Rights Commission (GHRC), and it was through her organization’s Speaker’s Tour with the indigenous activist Maria Choc that I first learned German Choc’s riveting story.

I updated my friend on my project’s slow progress, and by way of explanation said that perhaps people don’t perceive German’s appeal to be urgent. My friend disagreed, and said that this perception was due to my point of view. She told me,”You look at German Choc from a disability rights perspective, at his long-term needs–his access to medical care and right to employment. I look at him from a human rights perspective. I see him as a human rights defender attacked for defending his right to natural resources.”


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.