Jamie Valis is the Director of Health Training at Special Olympics, Lindsay Dubois is the Director, Research and Evaluation at Special Olympics, and Chelsea Fosse is a public health dentist, former Coordinator of the Clinical Director Community of Practice at Special Olympics, and Senior Health Policy Analyst at the American Dental Association. Jamie, Lindsay, and Chelsea recently participated in a WITH Wiki Scientists training course and reflect on their experience related to health disparities for individuals with intellectual disabilities.
At first glance, a Special Olympics competition looks like any other sporting event. Passion radiates from faces on the field, stretching is happening on the sidelines in preparation for an upcoming match, seas of uniform colors form as teams flock together throughout the facility, and fans cheer loudly. But what you may miss if you don’t look closely, is that life-saving health services and screenings are also taking place on-site during these competitions. Special Olympics athletes have intellectual disabilities (ID) and face greater barriers accessing and utilizing our complex health care system and suffer at disproportionate rates from chronic health conditions. They have difficulty finding providers who are trained and willing to serve them, and may struggle with or need the support of others in their day-to-day health needs. Special Olympics offer these critical health screenings to help end the health disparities and health care inequities that exist and are experienced by people with ID.
Special Olympics – with support from the Centers for Disease Control and Prevention (CDC) and the Golisano Foundation – has been striving to correct these inequities and promote the health and wellness of athletes and those individuals with ID. Our Inclusive Health programming includes: training health care providers and health professional students to provide higher quality care for people with ID; performing health screenings; offering health services such as prescription glasses, shoe fittings, and fluoride treatments; and referring athletes for follow-up care when necessary. While we’re incredibly proud of the progress we’ve made in bringing quality health care to our athletes in a positive and encouraging environment, we recognize there are so many more lives we need to touch, and additional work that needs to be done to increase awareness of the health disparities that exist in our communities around the world
When WITH Foundation and Wiki Education announced the opportunity for those in the disability and health space to come together to expand and enhance their knowledge base on disability and health, we were eager to participate. The call for participation in this program came through American Academy of Developmental Medicine & Dentistry (AADMD) on January 11th, 2020 – the exact day that Chinese media reported the first death due to COVID-19. On the first day of the Wiki Scientists course there were 0 confirmed cases of COVID-19 in the United States. The day the class ended, there were 22,086 confirmed cases in the United States. The correlation between the timeline of COVID-19 and this course is noteworthy given people with developmental disabilities are one of the most vulnerable populations to the virus. The most important risk for people with ID, however, is not the underlying condition, but the lack of access to quality health care and subsequent health inequities.
Three Special Olympics staff members were part of an 18-member cohort of students who were selected to participate in a 12-week WITH Wiki Scientists course to understand how to make scholarly research and Wikipedia contributions accessible to those with disabilities. The educational backgrounds, professional experiences, and personal journeys were integrated to allow each participant to explore their areas of interest while contributing to a broader mission. Participating in this course with such a diverse group allowed us to collaborate with other disability advocates and the broader disability community. We were reminded that many of the battles we face on a daily basis are those that are not just unique to people with intellectual disabilities.
Understanding how to utilize our sandboxes (pages designed for testing edits on Wikipedia), becoming proficient at using the visual editor, and evaluating wiki articles were amongst the many components of the weekly training assignment that we completed. Throughout the course, we were challenged to contribute to two Wikipedia articles. We placed emphasis on articles that had high relevance for understanding the health needs of people with intellectual disabilities and for solutions to improving health equity.
While the course focused on the basics of making contributions to existing articles and creating new Wikipedia entries, there was also emphasis on the overall concept of inclusivity and the need to create content that people of all abilities can read and understand. To address this, Wikipedia launched a simple English version of its platform for people with different needs, children, adults with learning difficulties, and people who are trying to learn English. The caveat is that content contributors need to write and submit this content separately.
Wikipedia editors are like anyone else, and they have their own biases and interests. Wikipedia is a reflection of the people who create it, and not necessarily the experiences and contributions of the broader population. This means that articles may have a more “ableist” point of view if they were written by scholars or contributors who don’t understand the lived experiences and needs of people with intellectual and developmental disabilities; these articles may use terminology that makes assumptions about the abilities of people with disabilities.
What became clear throughout the course was that Wikipedia, for all its vast wisdom and knowledge, is not immune to the shortcomings that we continue to observe in the fight for equity for people with intellectual and developmental disabilities. As a result of this course, the Special Olympics staff involved in this course propose a call to action for all scholars, experts, and other interested individuals to do the following:
1) Set up a Wikipedia account and learn how to create and review content.
2) Work on a simple language summary of your findings, recommendations, and guidelines every time you publish on Wikipedia content about people with intellectual and developmental disabilities
3) Review existing Wikipedia entries that are related to your areas of expertise and help create simple English versions of this content.
It has been the such a rewarding experience to meet new colleagues, collaborate with other disabilities advocates, and broaden our own horizons on issues faced by others in the disabilities community.
Lindsay Dubois, PhD
Chelsea Fosse, DMD, MPH
Jamie Valis, PhD
Interested in taking a course like the one Lindsay, Chelsea, and Jamie took? Visit learn.wikiedu.org to see current course offerings.