And now...many appreciations to Cherry Champagne for her willingness to join the conversation with her recent article, Rubella Epidemic of 1964-65, found in the November 21st issue of The Loop.
Stories matter. Whether told, sung, written, or shown, stories inform our worldview in myriad ways. Cherry’s story reminds us of many things. That life should be treasured. That severe disabilities can be tragic, but humor and curiosity can exist side-by-side with the struggles. That parents suffer when their child’s potential is crippled, and a life is cut short. Stories like Cherry’s serve as cautionary tales, urging us to learn from the past.
The trouble with anecdotal stories, however, is that there are many of them, they frequently contradict one another, they are usually infused with strong emotions, and they are not subjected to rigorous scientific analysis before they are persuasively presented to an audience. There is value in Daphne’s story. But, if you are in the process of making a medical choice for your family, you need more than a story that pulls at your heartstrings and influences your decision in one specific direction. You need science. Cherry’s story about Daphne is human, real, powerful, and moving...but it is not science.
What makes science different from stories? Simply put, science is a form of evaluation which avoids the common pitfalls of confirmation bias and preferred outcomes, allowing us to find answers that reflect data rather than our emotional expectations. Our gut can be right. It can also be dead wrong. Science, like all human endeavors, is an imperfect tool. History shows us we will err along the way, repeatedly. However, it is still our best tool for non-biased evaluation of complex medical issues.
As you consider your medical decisions, make space for a variety of stories in your process. Note family medical history and pay attention to the unique aspects of your community. Talk with your family doctor. Consider your family’s willingness and ability to use the various tools available to protect self and community. All these factors need to be taken into account in order to make the best decision for your child and your community.