Polio Survivors Ask…

Nancy Baldwin Carter, BA, M Ed Psych, Omaha, Nebraska, (n.carter@cox.net)

Q:  I recently attended a banquet given to raise funds meant to help eradicate polio worldwide. Others at our table seemed to believe that this was the end of it—that once we get everyone immunized, there would be nothing more to do regarding polio. Why don’t people hear as much about ongoing needs of polio survivors as they do about efforts to eradicate the disease?

A:  The simple answer is that the CDC and Rotary International and others have spent a good deal of time and money organizing and publicizing this most successful eradication effort (and thank goodness for that). But so far nobody has approached our post-polio cause with anything close to that much vitality.

More to the point, perhaps, is what can WE do? A vigorous grass roots effort on the part of polio survivors and their families could create a domino effect, finally attracting the attention of those in an excellent position to assist us in meeting our goal.

And what is this goal? To alert health professionals, policy makers, and the general public to the fact that polio survivors are active individuals within their communities with successes to tell, and for many of us, unmet needs.

One huge need is for rehabilitation as well as re-rehabilitation. Polio survivors remember the role rehab played in taking us from polio patient to functioning member of society as we recovered from the disease initially. Worldwide, rehab efforts, although limited in some countries, still exist. And now the cause is just as great for re-rehabilitation as those of us with the late effects of polio struggle to get back on our feet from this second blow.

We hope for doctors, therapists, medical institutions to see our plight and come pounding on our door. We look for policy makers to steer others in our direction. We dream of energizing those in our communities in the same way FDR brought them to our side all those years ago.

It all starts here, with you and me and each of us.

After a death in my family last month, someone asked where she could send a memorial. I suggested the research division of PHI, to help boost the amount of money available for promising grants. Shouldn’t people know that right now we’re close to finding a definitive diagnosis for post-polio syndrome—and that this could lead to breakthroughs in treatment?

A few days later she called to ask if I minded her sending the money to a homeless shelter, instead, since they have a current need. Of course the shelter is worthy. And in her mind, post-polio is so remote it presents no urgency whatsoever. That made me sit up and pay attention. What can I do to make a difference? What can I do to get others to take notice?

I’ve been looking over ideas various groups have proposed. Did you see the “button” suggestion? Wearing buttons with the WE’RE STILL HERE logo on them? Brilliant, I thought! I could wear one, and everywhere I go people would ask who “WE” are and why they should care if we’re “STILL HERE.” A Johnny Appleseed of post-polio, that’d be me. How does that quote go? If everyone lit just one little candle, what a bright world this would be!

Or I could reach lots of people at once by being part of producing the skit right here in Omaha that’s offered on the PHI website this year. What a kick!

Take a look at the bright green logo at www.post-polio.org and discover some great possibilities. You’ll see. And remember this: Anything we can do is a zillion times better than doing nothing at all.

Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.

Source: Post-Polio Health International (www.post-polio.org)