Zuebeyde Horus is a young woman with an intellectual disability from Turkey, and a Special Olympics athlete. Like most young adults, she leads an active and healthy life. Her family and friends join in cheering her achievements in sport, just as they would any typically developing peer. But, neither she nor her family could possibly have been prepared for the shock of her most recent visit to a Special Olympics event. There, Zuebeyde was invited to the Special Olympics Healthy Athletes venue for a checkup with highly trained physicians and health educators. Away from the sun of the athletic competitions, Zuebeyde Horus was diagnosed with atrioventricular septal defect, a condition that causes holes between the various chambers and valves of the heart: She had no idea that she had lived her entire life with a condition that easily could have killed her.
Though Zuebeyde and her family were in shock, her condition should not come as a surprise for medical professionals familiar with intellectual disability. An estimated 45 percent of children with Down syndrome, for example, have some type of congenital heart disease, and a physician who was trained to provide high quality care for a person with an intellectual disability would have no trouble identifying and responding to this serious condition.
But, that’s not what had happened to Zuebeyde. Instead, despite being a relatively common condition that is also simple and inexpensive to detect, Zuebeyde’s heart defect was not identified by screening after birth, nor was it identified during childhood or adolescent visits to the pediatrician. For her, the primary problem was not her heart condition, it was the way in which the medical profession failed to diagnose or treat the defect. Over and over again, Zuebeyde came into contact with medical professionals, and over and over again, their failure to detect a relatively common condition left her at risk for developing a life-threatening condition.
How does such a serious condition go unnoticed so long?
Through decades of field work and scientific research, Special Olympics International has documented millions of stories like Zuebeyde’s, linked to one overriding factor: subtle but persistent discrimination against people with intellectual disabilities. This discrimination compromises the quality of health systems worldwide, limits the effectiveness of care and, as a result, diminishes the quality of life for people with intellectual and developmental disabilities. The problem is as simple as it is shocking: patients with different intellectual abilities are considered to be less valuable human beings than their typically developing peers. This attitude is prevalent across geography and culture, and is sadly common in the profession most charged with compassion and healing: medicine. Health care systems, training programs, insurance schemes, research endeavors—none of these are designed to accord fair treatment to people with intellectual disabilities. And what’s more, people with developmental disabilities who do see a doctor have a low chance of receiving quality care. As one health professional confided to me years ago, people with intellectual disabilities often receive “a quick and dirty examination– get them in and get them out. They don’t complain and they don’t have complex tasks in life. Quality isn’t important.”
“Quick and Dirty.” Those words should be treated as evidence of a crisis. Discrimination in health care should be a source of outrage. Instead, it is often overlooked or ignored. Even when health care systems and aid programs attempt to meet the needs of marginalized populations—those living in extreme poverty, ethnic minorities, women and children—they almost never count people with intellectual disabilities among those in need of outreach. Medical training programs and graduate schools generally offer little or no training in the care needed by people with intellectual disabilities. In many countries, health ministries and insurance schemes discriminate boldly and with impunity. “We know they’re not getting care but there’s nothing we can do about it. We have limited resources.” The implications of this frequently repeated plea are unmistakable: others are more deserving.
More than one billion people in the world live with some form of disability, according to the World Bank and World Health Organization’s “World Report on Disability” published in 2011. Unfortunately, this report does not offer numbers specifically for intellectual disability, but estimates suggest that more than 200 million people worldwide have an intellectual disability. The first-ever “World Report on Disability” documents the myriad of barriers people with disabilities must overcome on their own to access health care. Issues such as cost, transportation, providers’ lack of training, and arguably most disturbing, providers’ unwillingness to see patients with intellectual disabilities are well-documented. A shockingly high percentage of people with disabilities, especially in high-income countries, reported that they “tried but were denied care.”
Special Olympics has developed and maintains the largest collection of health data on people with intellectual disabilities, and has documented dramatic health disparities that support the findings of the “Report on Disability”:
- Nearly 40 percent of Special Olympics athletes have obvious, untreated tooth decay;
- 16 percent have a disease of the eye;
- 26 percent fail a basic hearing test;
- 20 percent have low bone density, putting them at risk for injury and chronic osteoporosis;
- 36 percent of adults are obese.
Perhaps the most alarming finding is the lack of concern or awareness of this neglect on the part of the general public. Despite so much evidence to the contrary, 68 percent of people worldwide believe that those with intellectual disability receive the same or better health care than those without disability. It is clear that public attitudes are badly misinformed, and that inaction persists as a result.
Fortunately, the outlook for people with intellectual disabilities is more hopeful today than it has been in the past. Although long overdue, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) came into force in May 2008 and had 153 signatories and 111 parties as of March 2012. Parties are required to promote, protect and ensure the full enjoyment of human rights by persons with disabilities and ensure that they enjoy full equality under the law. Article 25 of the CRPD reinforces the right of persons with disabilities to attain the highest standard of health care , without discrimination.
Perhaps even more importantly, advances in the law are being matched by advances among citizen groups. In recent years, Special Olympics has been joined by over 100,000 health care practitioners around the world, all dedicated to improving the quality of professional training, bringing the data on injustice to light, and providing front line education and care to people with intellectual disabilities in their own communities.
As a grassroots organization, Special Olympics, and the promising results of our work, provide one small example of the motivated citizen-level communities of enforcement that can ensure high standards of health justice. With support from the U.S. Centers for Disease Control and Prevention and numerous corporate and non-profit partners, Special Olympics Healthy Athletes has been an active force for bringing people with intellectual disabilities out of the shadows and into doctors’ offices. When doctors’ offices are too difficult to reach, bands of dedicated volunteers venture out to institutions and community centers and village fields with the basic tools of care and a willingness to break down the barriers that have stood for too long. Day after day, Healthy Athletes teams train health providers in care and treatment, provide screenings and health information in seven different disciplines, deliver needed referrals and, in some cases, follow-up care.
Since its official launch in 1997, the Healthy Athletes volunteer corps has provided nearly 1.4 million health screenings to Special Olympics athletes, distributed more than 90,000 pairs of eyeglasses free of charge, partnered with dental schools and dental treatment organizations to provide oral care, helped launch new organizations dedicated to training in developmental medicine, organized water cleanliness and nutrition education for tens of thousands, and more. Recent work with partners has also triggered new efforts to provide follow-up dental work, hearing aids, and other forms of free care to athletes.
Those of us who are part of the worldwide Special Olympics are determined to continue to expand our model. We hope to close the gap in development funding for the health needs of people with intellectual disabilities in the world’s poorest nations, strengthen the engagement by existing public health organizations and foundations of people with intellectual disabilities, and continue to highlight shocking episodes where the human dignity of our friends with intellectual disabilities are violated–whether those violations take place in the dark institutions of the developing world or in the shiny and bright hallways of elite hospitals or governments. Despite all of our efforts, we are just scratching the surface. We cannot be anything but relentless in our pursuit of justice, acceptance and health. Our very dignity depends on our capacity to bring to reality the dignity of all.
Today, Zuebeyde is receiving treatment that is expected to add 20 or 30 years to her life, all because one volunteer doctor took the time to see her and treat her like he would any other patient. She is our role model of change—a wonderful human being who is able to live her life to the fullest because of the goodness of another. For over 40 years, Special Olympics has been powered by this goodness, which has, in turn, confirmed our belief that the world can change, one person at a time. Our conviction remains that each one of us can have the honor to take part in building a more just and healthy future, and that each one of us–no matter where we live, no matter our level of influence, no matter our previous relationships with people with intellectual disabilities–can be the next person to change the world.
That is our dignity revolution, and we intend to follow our athletes in pursuit of it every day until the scourge of intolerance is forever removed from communities the world over.