Editor’s Note: This is a guest blog by Dr. Matthew Holder, MD, MBA. In addition to his roles as Global Medical Advisor for Special Olympics and Global Clinical Advisor for the MedFest discipline of Special Olympics Healthy Athletes®, Dr. Holder is the CEO of the Lee Specialty Clinic and President of the American Academy of Developmental Medicine and Dentistry.
Let me win, but if I cannot win, let me be brave in the attempt. As the Global Medical Advisor for Special Olympics I have heard this, the Athlete Oath, more times than I can remember. Yet every time I hear it, I become more inspired. Not only by the meaning of the words, but by the symbolism of our athletes taking that oath. It is a reminder that on the path to success, there are no excuses. There is no acknowledgement of the limitations that others may place on you. In these words there is only a relentless pursuit of giving your all and achieving your best.
As I write these words today, there is a young mother who is living the spirit of the athlete oath on behalf of her daughter. Her daughter, Lily, is only a few months old and is in desperate need of a transplant. Under different circumstances Lily would already be on the transplant list. But Lily is different. The doctors believe that Lily will have an intellectual or developmental disability when she grows up and because of this, she is not on the transplant list. In essence, the medical community has deemed her life to be less than equal to the lives of other children. On a ventilator and struggling to stay alive, Lily is unaware of what she symbolizes and the difference that her existence in this world may make. Lily’s mother is refusing to give up and she is challenging the medical system to give her daughter a chance.
The fight going on around Lily is emblematic of the struggle that people with intellectual disabilities face around the world every day. The fight for Lily’s life goes far beyond the abilities of medical science. It goes beyond the availability of scarce resources. The fight for Lily’s life is a fight against prejudice, inequality, and injustice. It is a fight that in no ambiguous terms shows how we treat those who are deemed, with the permission of society, to be of lesser value.
In the United States today, it would be hard to fathom the public outcry if doctors refused to give a transplant to somebody because of their gender or their skin color. It would be hard to imagine the public outcry if people were denied organ transplants because they didn’t score high enough on an IQ test. And yet here we are. Lily is too young to have an IQ test, but just the fear alone that she might one day have an intellectual or developmental disability is enough for the medical community to not allow her to be a candidate to receive a transplanted organ. In a country that prides itself on equal protection under the law, Lily is fighting for her life, because she and millions of people like her are not seen as equals.
I have seen scores of different healthcare systems in the United States and around the world. I have seen health systems in highly developed countries and in still developing nations. I have seen socialized and non-socialized systems. I have viewed these systems not through the lens of some World Health Organization survey or a newspaper article or a politician’s speech, but through the eyes of our Special Olympics athletes. Though I have seen the results of all manner of healthcare systems, I have only one commonality to report: there is no healthcare system in the world that provides adequate care to people with intellectual disabilities, and this is precisely because in almost every society around the world, people with intellectual disabilities are not held as equals.
In order to address this problem, we have to address other factors like time, education, and attention. This is why I am so proud of the work that is being done through the Special Olympics Health program, made possible by the Golisano Foundation, and specifically the focus on Healthy Communities. The Healthy Communities program is seeking to change the way that people with ID are integrated into their health systems around the world, one community at a time. By bringing attention and visibility to the health needs of people with ID, the Healthy Communities program is developing a large network of organizations and individuals who will include people with intellectual disabilities in their daily work. This might mean better access to potable water in Africa, a more inclusive medical school curriculum in Southeast Asia, a stronger healthcare referral network in the United States, better health promotion activities in Europe, or better insurance coverage in Latin America. But most importantly, each Healthy Community is identifying the biggest barriers to health equity for people with ID and attempting to address them.
On this World Health Day, as each of these systems’ changes takes hold, we slowly but steadily march forward toward the goal of health equity for people with ID. We continually strive to make these advancements knowing that we may not ever be satisfied with what we have accomplished, but knowing that by striving, we can change the world and make it a better place for people with ID and, truly, for all people. We do this for the sake of our athletes and for children like baby Lily, who we hope one day will know a world that, instead of turning away from her because of her possible limitations, will embrace her because of her limitless possibilities.
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