Unidos por la inclusión, unidos por los datos: United for Inclusion, United for Data
In March of 2017 right before the Special Olympics World Winter Games in Austria, we wrote about the power of numbers and the importance of collecting data on the health of people with intellectual disabilities (ID). Nearly two years later, and on the eve of another major event, our #InclusiveHealth goals persist and so does the power and potential of that data.
In just a few days, 400 athletes from 30 countries will gather in Santo Domingo for the Special Olympics World Tennis Invitational in celebration of the 50th Anniversary of the Special Olympics movement. In addition to the tennis tournament, the Dominican Republic will host the Special Olympics Global Athlete Congress alongside other Special Olympics activities. Together, the events in Santo Domingo represent an effort to show the world what a truly inclusive society looks like. This vision is captured concisely in the event’s tagline: “Unidos por la inclusión,” or “United for Inclusion.”
One of the events the Dominican Republic will host is Healthy Athletes, a Special OIympics Health program that offers free health screenings and education to athletes in a fun and welcoming environment. Since its founding twenty years ago, Healthy Athletes has conducted over 2.1 million screenings in more than 135 countries. During this tennis tournament, athletes will have access to screenings in four of the eight health disciplines: Health Promotion (better health and well-being), Opening Eyes (vision), Fit Feet (podiatry), and FUNfitness (physical therapy). Reports aggregating the results of these screenings will be run on a daily basis, which means we will know the impact of this Healthy Athletes event on participating athletes in real-time.
The athletes that make up these numbers represent one of the most consistently marginalized subgroups in the world. In fact, people with ID are so marginalized that hardly any data exists on them outside of Special Olympics. Without these data, people with ID are invisible. They are invisible in mainstream data sets and censuses, and they are consequently forgotten when governments and health systems write policies. The downstream effect of this is that people with ID experience significant adverse health outcomes.
Given its global reach, Special Olympics is uniquely positioned to address these health disparities. However, to do this effectively, we need data. Data allow us to quantify and say with confidence that people with ID face health disparities, they allow us to describe the magnitude of those disparities, and they allow us to understand what those health disparities even are.
For example, through Healthy Athletes data, we know that adults with ID are more than two times likely to be obese compared to adults without ID. Within Special Olympics, these data allow us to target our programming and integrate more fitness and wellness opportunities that promote physical activity, nutrition, and hydration at the local level. Outside of Special Olympics, these data can be shared with local governments and policymakers, health care providers, and ministries of health to open the door for real change to occur at the systems level.
Healthy Athletes data are critical at the local level and have real implications. At the 2015 World Summer Games in Los Angeles, St. Vincent and the Grenadines Bocce player and silver medalist, Cuthbert Michael, came to a Fit Feet screening where neuropathic ulcers were identified on both of his feet. When not treated, neuropathic ulcers can cause sepsis, which can be fatal. Cuthbert was taken to a clinic and eventually a hospital in Los Angeles where he was placed on antibiotics until his feet were stabilized. After Cuthbert was released from the hospital, he was able to participate in Bocce with his teammates. Upon returning home to St. Vincent and the Grenadines, Cuthbert was connected with local health care providers for further treatment. Through the Healthy Athletes network, Cuthbert was able to receive the proper care he needed back home in his own community.
The upcoming Special Olympics World Tennis Invitational presents yet another opportunity to learn more about the health of people with intellectual disabilities. With these data, we can advocate more powerfully for and with people with intellectual disabilities. As we get ready to be #UnidosPorLaInclusión, it is critical we are also #UnidosPorLosDatos, united for data.
