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 intellectual and developmental 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 Keyes, 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.”
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.