Developmental Disabilities

These posts address issues relating to people with developmental disabilities, which are physical and/or intellectual disabilities that occur before a person is 18 years old, thereby affecting his or her development.

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.

 

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

Walk the Line & Burn Down the Ground

I love reading, and often wonder about how the voices of authors sound. Many times the narration I read in my head sounds quite different from the authors themselves.

I read Secret Daughter: A Mixed-Race Daughter and the Mother Who Gave Her Away  years ago, and was delighted to hear June Cross’s voice in my ear on The Moth podcast. In both the book and the memoir, June describes growing up as the secret daughter of a white actress and black comedian during the 1950s. In the podcast “Walk the Line,” June describes attending a Johnny Cash concert with her mother, and how that experience gave her a way to “walk the line” and thus balance her African-American and white identities, which she had previously seen as separate, and believed that she had to choose between the two.

I discovered memoirist and actor Kambri Crews through the opposite path. I first heard “A Blind Ear,” in which Kambri, a child of deaf adults (CODA) shares a dramatic story that caused her to re-evaluate her understanding of her parents and their marriage. My interest piqued, I read her memoir, Burn Down the Ground.

The act of “burning down the ground” refers to a moment from Kabri’s childhood where  Kambri’s parents had to set a brush fire to clear the land where they built their home in rural Texas. Her father had explained that they needed to burn down the ground so that fresh new plants could spring up.  Burn Down the Ground is a metaphor for how Kambri balances her past and present.

Both memoirs and podcasts are compelling, linked together in my mind because of how the authors describe traversing barriers based on race and disability to forge their own identities.

Read and listen to June Cross

1. Cross, June. Secret Daughter: A Mixed-Race Daughter and the Mother Who Gave Her Away. 2006. http://www.amazon.com/Secret-Daughter-Mixed-Race-Mother-Gave/dp/067088555X

2. “Walk the Line: Stories of Balancing Acts.” The Moth. 2011. http://www.podcasts.com/the_moth_podcast/episode/june_cross_secret_daughter

Read and listen to Kambri Crews

1. “A Blind Ear.” The Moth. Oct 23, 2012.http://www.podcasts.com/the_moth_podcast/episode/kambri_crews_a_blind_ear

2. Crews, Kambri. Burn Down the Ground: A Memoir. 2012. http://www.amazon.com/Burn-Down-Ground-A-Memoir/dp/0345516028

Project Intersect: Health Disparities Research at the Intersection of Race, Ethnicity, and Disability

On April 25 and 26th, I attended the Project Intersect Conference, which convened advocates, researchers, practitioners, and policy makers nationwide to discuss health disparities experienced by people with disabilities from underserved racial and ethnic backgrounds. The Conference Summary defines “underserved” as “racial and ethnic groups who have not received the same opportunities, resources, and services as White people. These underserved groups include African-Americans, Asian Americans, and Latinos.”

The opening panel was an opportunity to learn first hand from people who have experienced barriers to accessing quality health care services based on their racial and ethnic backgrounds. The first speakers, the Lee family, were a Chinese American family whose adult daughter has Downs Syndrome. Her parents described the difficulties they experienced in getting their state’s health care system to approve the cost of treatment for secondary conditions from physicians who understand Chinese culture and language, important components to empower their daughter in her health care.

The next speaker, Wardell Kyles, was an African-American male with a spinal cord injury (SCI) resulting from an accident. He was quick to point out that in the greater Chicago area where he lives, the leading demographics of people with SCI are young African-American males who have been paralyzed as a result of gun violence. Walter described learning to navigate the health care system and advocate for himself, and how he draws on these experiences to mentor young men with SCI.

The third speaker, a Mexican man named Horacio Esparza, is host and producer of Radio Vida Independiente, a Spanish language radio show by and for people with disabilities; Executive Director of Progress Center for Independent Living that serves the entire suburban Cook County area; and author of a collection of poetry titled “Un Sueno y un Despertar” (“A Dream and an Awakening”). He became blind as a child, and believing his blindness to be a result of an accident, he was shocked when his two children’s retinas detached while the family was living in Mexico. It had never occurred to him that his blindness could be hereditary.  The family moved to the United States, where they believed they would receive better quality health care, but instead encountered racist and xenophobic doctors who accused the family of being undocumented immigrants “taking advantage of America’s health care system.” After a long ordeal, the family found a compassionate Cuban doctor to treat their children, who are now adults with successful careers. Horacio stated that has a result of his family’s experiences, he believed that health practitioners not only should have “knowledge of a person’s health care need, but should be sensitive in responding to that need.”

The fourth and final speaker, Angel Love Miles is a young African-American woman with Spinal Bifida, earning a PhD in Women’s Studies from the University of Maryland. She described interactions with the academic and medical communities where her disability has been treated with disregard and disrespect. The academic community does not allocate funding based on the consideration that students with disabilities may take longer to graduate from a PhD program. Her doctor’s office is unable to accommodate her electric wheelchair, so every time she visits, she must leave her wheelchair outside before transferring to crutches and taking the elevator. She described recent incident when she was in the hospital, and in pain, requested a bedpan from a nurse, who responded condescendingly that she wanted to “motivate” Angel to use the toilet.  Angel’s response to this insensitive and prejudiced remark–“I’m in a PhD program, I don’t need you to motivate me.”

The next panel discussion featured professionals whose work addressed the intersections of race, ethnicity, and disability through social science research as well as legal and political advocacy. The speakers were tremendously informative, and I was very interested to learn that the Article 25 of Convention on the Rights of Persons with Disabilities (CRPD), an international treaty guaranteeing the human rights of people with disabilities, specifically declares that people with disabilities have the right to health care services of the highest quality.

The afternoon’s sessions provided an opportunity for all attendees to develop and vote on a research proposal to further document the “axis of inequality” experienced by people with disabilities from underserved racial and ethnic backgrounds. The  day concluded with a poster session, where I enjoyed having the opportunity to chat with attendees and panelists, and learn about recent projects that spanned an array of issues in the fields of health, race, ethnicity, and disability.

The second day began with Keynote speaker Dr. Camara Phyllis Jones, MD, MPH, PhD, who gave a stirring speech, which she opened by explaining: “in America, I am seen as black, but in parts of Brazil I would just as surely be seen as white, and in South Africa, I would be colored….And if I were to live in each of these places long enough, I would take on health outcomes based on the race I was perceived to be.” She expanded upon this idea by using a metaphor of a cliff to represent a health emergency, and described how certain groups, such as people with disabilities and underserved racial and ethnic communities are closer to the cliff than other groups. She defined the goal of a successful health intervention “to move people away from the cliff.”

Dr. Jones shared musings about key differences she had observed in how society perceives people from underserved racial and ethnic groups who have “fallen off the cliff” as compared to people with disabilities. She stated that for people from underserved racial and ethnic groups, “barriers [to accessing quality health care services] are unseen and ignored.” For people with disabilities, “barriers [to accessing quality health care] are often seen, but ignored.”She added that a person’s race is perceived to be unchanging, while anyone could develop a disability at any time that may or may not be visible.

To illuminate how people from underserved racial and ethnic groups and people with disabilities receive differential access to goods, services, and opportunities in society, she used an allegorical story based on her own experiences called “the Gardener’s Tale.” I found this story to be very moving and effective for understanding institutional racism and ablism, and rather than summarizing it here, I have linked to it at the post’s conclusion to give readers an opportunity to read Dr. Jones’s eloquent words first hand.

Dr. Jones concluded her speech by describing methods to reverse institutional racism and ablism that would result in achieving improved health outcomes for people with disabilities from underserved racial and ethnic groups, thereby “moving them away from the cliff.” She referred to the United Nations’s Convention for Rights of Person’s with Disabilities (CRPD) mentioned above, and also asked if the audience knew that the United States had signed and ratified an international anti-racism treaty known as the International Convention on the Elimination on all forms of Racial Discrimination (ICERD) in 1994.

ICERD, which was written into force in 1969, is designed to protect individuals and groups from discrimination based on race, whether the discrimination is intentional, or is the result of seemingly neutral policies such as police profiling. According to Dr. Jones, the United States Government must submit regular reports to an independent committee of experts on how the treaty is being implemented. the US is due to release its third report to the Committee in  spring 2013. Dr. Jones wrapped up her speech with the message that disability rights and racial justice advocates “need to keep building with each other.”

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Image from Project Intersect’s promotional materials

Learn more about the Project Intersect Conference

1. “Project Intersect: Health Disparities Research at the Intersection of Race, Ethnicity, and Disability: A National Conference.”  Oregon Health & Sciences University. http://www.ohsu.edu/xd/research/centers-institutes/institute-on-development-and-disability/public-health-programs/project-intersect/upload/Conference_Program-FINAL.pdf and http://www.ohsu.edu/xd/research/centers-institutes/institute-on-development-and-disability/public-health-programs/upload/Project-Intersect-Summary.pdf These are links to the official conference program and summary.

2. Jones, Camara Phyllis. “Levels of racism: A theoretic framework and a gardener’s tale.” American Journal of Public Health. August 2000.http://www.cahealthadvocates.org/_pdf/news/2007/Levels-Of-Racism.pdf  Keynote speaker Dr. Camara Phyllis Jones explains her theories regarding institutional racism, a framework could be applied to ablism, classism, heterosexism, and other “isms” and illustrates the framework using a story about a gardener.

3. NARIC. “Health Disparities Research Meets Race, Ethnicity, and Disability at a National Conference.” Collection Spotlight from the National Rehabilitation Information Center (NARIC). May 1, 2013. http://naricspotlight.wordpress.com/2013/05/01/health-disparities-research-meets-race-ethnicity-and-disability-at-a-national-conference/ These blog posts provide detailed information regarding the speakers and organizations who led the Conference’s presentations and breakout sessions.

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.”

Disability and Employment–in Guatemala and the United States

This week marks the  23rd Annual National APSE Conference. APSE is the only national organization that has an exclusive focus on integrated employment and career advancement for individuals with disabilities. This is my first APSE conference, and I feel so energized to meet professionals from all over the country, and participate in workshops where I can learn all about their innovative approaches to creating equitable employment opportunities. I am also  happy to see and spend time with my mentor-friend, who was presenting at the Conference.   My mentor-friend has been guiding me into the field of disability rights and integrated employment with enthusiastic kindness, and I feel so appreciative of her encouragement.

Attending the APSE Conference also gave me an interesting mental space to reflect on how having a disability affects a person’s access to employment opportunities in the United States compared to Guatemala. Talking with my mentor-friend yesterday about the treatment of people with disabilities in countries outside the United States, she pointed out, “that when you work in the disability rights field, you think about how people with disabilities are living everywhere…” She was right. When I first saw the image of German Choc, sitting in his wheelchair, squinting against the sun, a question burst in my mind. I wonder what it’s like to be a person with a disability in Guatemala?   

I wanted to understand what living with a disability in Guatemala was like so that I could identify the best micro-lending organizations and grant opportunities that would support German’s economic self-sufficiency and medical needs. To sum up my research in a saddening statistic: the National Disability Council (CONADI) estimates that around 12-14% of the total population in Guatemala has some kind of disability, and the percentage of  people with disabilities who currently have jobs is possibly as low as 2%.

I read the article Guatemala: The situation facing the disabled, particularly persons with speech and hearing losswhich is 12 years old, but despite its adolescent age, cited many reputable sources.  The author Inforpress Centroamericana describes a very restricted world for Guatemalans with disabilities. In a nutshell, Guatemalans with disabilities do not receive any public assistance benefits from the Guatemalan government, and many people must rely on their families for financial support. Sidewalks, buildings, and public spaces are generally not accessible to people with disabilities, and Guatemalans with disabilities have very limited access to professional and educational opportunities.

The article states: “As a result of this situation, it is common to witness persons with hearing and speech loss, paraplegics, blind persons, or other disabled Guatemalans begging for money on the streets, in the buses and in restaurants, often placing themselves in degrading situations or at risk of physical harm in traffic while soliciting for subsistence income.”

The article indicated that thee are few Non-governmental organizations that serve Guatemalans with disabilities, and my research uncovered two organizations that provided support to people with disabilities–a Center for Independent Living or Colectivo Vida Independiente de Guatemala, and Transition Foundation in Antigua, which was co-founded in 1998 by a North American and a Guatemalan man named Alex Gálvez, who like German, was paralyzed due to a gunshot wound.

Alex’s motivation to establish Transitions Foundation arose from his own experiences and ambition to create a space where Guatemalans with disabilities could “reclaim their lives.” Transitions has a Wheelchair Workshop and Prosthetic & Orthotic Clinic, and also provides vocational and educational support in its Print Shop, Special Education Classroom, and Sports and Recreation Program. I had tried contacting Transitions Foundation back in May, and have not heard back. Their Facebook Page indicates that they have an active presence, and plan to contact the Foundation again once I touch base with Rights Action.

I had planed to wrap up this post with information learned from the APSE conference about disability and employment in the United States, but I have decided to save my thoughts and partake in what Macbeth would call the sleep that “knits up the raveled sleeve of care.” One tidbit into what I’ll be discussing next–Guatemala ratified the UN Convention on Rights for Persons with Disabilities in 2009, and the Convention is currently awaiting approval for ratification in the United States Senate.