Polio Place

A service of Post-Polio Health International

We Are Still Here

Category: Essays

Sunny Roller

As we celebrate the stunning success of the polio vaccine today, I am honored to help commemorate the anniversary by sharing a very personal perspective with you.

Fifty-three years ago, when I was four years old, I almost died from polio. During the acute phase, I could only move one finger. The rest of me was completely paralyzed.

Back in the 1950s that disease was certainly spectacular. It struck. It killed. Or it left its permanent trademark on so many of us. Polio left me using two leg braces, a pair of crutches and a back brace.

My struggles when growing up with a disability were certainly continuous. Having to learn to walk all over again, grueling physical therapy, five orthopedic surgeries, and trying so hard to be like all the other kids at school who didn’t use braces and crutches. I knew down deep when my mother gazed at my fourth grade class photo one day, with me conspicuously leaning on my little wooden crutches in the midst of my non-disabled school mates, and said, “you always add such great visual interest to your school picture,” that although not everyone would lovingly accept me with my obvious physical disability the way she did, there was love and support all around me.

Back in the 1950s, she taught me that my attitude about polio was much more important than its physical effects on me. The power of self-determination and social support far out-weighed the power of disability. In fact, we as polio survivors must gratefully celebrate today the astounding amount of social support we received from a fully energized 1950s American community that wanted to save our lives, help us breathe and walk again and succeed in life in unprecedented ways.

Because rehabilitation and eradication efforts were so effective, for thirty years polio survivors blended into society. Polio was so horrible that nobody anywhere in our nation really wanted to think about it anymore, especially those of us who had it. I went to school and started a professional career. The disease was gone, and collectively those of us who had polio were also gone from the national consciousness—almost like medical dinosaurs, fading phantoms of a past era. Everybody waved good-bye to the phantoms as we all went on with life.

But then 22 years ago, when I was 35-years old, once again spectacular polio returned to leave an unwelcome trademark. Debilitating new pain, weakness and fatigue forced me into a whole new series of health care system expeditions. After seeing five different doctors it was concluded here at the University of Michigan Post-Polio Clinic that I had what is now known as the post-polio syndrome. These post-polio symptoms affect half a million polio survivors today in the U.S. alone and confirm that polio creates a progressive condition.

Now I need to use a wheelchair more often. The fear, alarm, sadness and rage I felt at having to fight polio once again are characteristic emotions shared by polio survivors across the country as they too have faced greater disability after 30 years of physical stability. We felt betrayed by childhood physicians who unknowingly told us that not much would change as we grew into our late life years. So we all had to quickly adapt to these unexpected new issues—health care providers, policy makers, medical researchers, polio survivors, their families and friends. And we continue to do so today.

The World Health Organization estimates there are up to 20,000,000 survivors of poliomyelitis in the world right now. We are the second largest disability group in our country next to those who have had a stroke. Because of our history and our large numbers the struggles we have encountered with our physical losses have paved the way for a variety of scientific and social advances.

The medical specialty of physical medicine and rehabilitation (PM&R) started largely because of us fifty years ago. Thousands of children with polio needed rehabilitation in the 1950s. Today PM&R provides critical health care services to large numbers of children and adults recovering from devastating injures and diseases.

In the 1960s the disability rights and independent living movement leading to the passage of the Americans with Disabilities Act started at the instigation of several polio survivors including Ed Roberts and Judy Heumann. They knew our society could do better at addressing the environmental and attitudinal barriers toward disability that were truly handicapping a significant portion of our population, in fact, when you think about it, all of our population. They taught me that not only was my attitude important, but breaking down the external barriers in our communities is absolutely imperative.

In the 1980s the vigorous grassroots movement to address the disabling late effects of polio was energized by thousands of polio survivors in partnership with their health care professionals.

Out of this sociopolitical movement, emerged the now twenty-five year old organization for polio survivors and their health care professionals called Post-Polio Health International. Groups like PHI have promoted networking, advocacy, education and new scientific research that have stimulated the way we think about neuromuscular disease. The risk factors for what are now known as polio’s secondary conditions have been identified and are being addressed for the first time in public health arenas because we were the first to desperately report these issues to our physicians en masse. Because of this, new medical management techniques have been adopted to prudently help those who are facing progressive disability or fast-track aging from a variety of neuromuscular impairments such as spinal cord injury, cerebral palsy or spina bifida. This post-polio movement will help many people who have similar disabilities in generations to come.

Important Disability Studies programs at American academic institutions have been started by polio survivors like Irv Zola in Boston and Carol Gill in Chicago. These programs enlarge and honor the disability paradigm to view people with a wide range of disabilities not as objects but as ingenious producers of knowledge whose common history has generated a wide and rich variety of art, music, literature, and science that happens to be infused with the experience of disability.

As we celebrate the annihilation of the disease called polio today, we recognize that there is much left to be done. Polio survivors still have important needs for knowledgeable health care providers in many fields of medicine who are thoroughly educated about polio’s late effects. With the large generation of aging polio survivors at the forefront, public policy makers need to address many other instrumental needs of polio survivors. These include the new early retirement requirements of adults who will be aging with a lifelong disability, which will also help so many baby boomers who are aging into a disability. We cannot let our social security system collapse. Medicare and Medicaid need to get stronger. Issues of health insurance coverage for personal assistance, health and wellness activities, long-term health care and assistive technologies are important to address. Housing and transportation opportunities need to become more affordable and accessible. These are all public health issues that need to be addressed in public policy arenas and the private sector through organizations like March of Dimes and Rotary International.

Let us celebrate the fact that huge numbers of us who have been living with the effects of polio for over fifty years have quietly figured out how to thrive and make substantial social and political contributions in a non-disabled world. Most of us are not famous, but some of us are, like Itzak Perlman, Alan Alda, and Joni Mitchell. We also recall the luminosity of Franklin D. Roosevelt.

Getting polio is mostly a thing of the past, thank goodness, but we who had polio are alive and have been here all this time! We are with you! Now that our average age is about 65 years, as we look back, we know that we have experienced the issues and challenges of physical disability with a longevity and fullness never before known in the history of mankind. Before it’s too late, we need to share our wisdom about living and loving with a life-long disability with the world. I believe that we as polio survivors have within us, both individually and collectively, a wealth of knowledge and insight that can help others grow and flourish. We still have so much to contribute, which, thanks to the ongoing compassion and concern of all of us…we will do.

Sunny Roller, MA, Presentation at the Salk Celebration, University of Michigan, April 12, 2005 

Tagged as: attitudes , disability rights , respect

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