Editor’s note: This story originally appeared in the Idaho Statesman on Jan. 5, 2009.
One day about 60 years ago, a 10-year-old girl came home from school complaining that she didn’t feel good. A test in the hospital confirmed the diagnosis, becoming the moment that defined the “before” and “after” part of her life.
Marilyn Shuler had polio.
Polio is a virus, now virtually eliminated in the United States. But in the 1940s and ’50s, when Marilyn was a girl, polio was an epidemic, affecting thousands of children every summer. (At its height, 58,000 children got the virus in 1952.)
She says: “I was pretty much paralyzed. (But) I could breathe. My hands and arms weren’t impacted and I didn’t have to go in an iron lung.”
Polio was the AIDS of its day, with rampant fear and misunderstanding about contagion. Not only was the disease physically debilitating and potentially fatal, but it also carried a huge social stigma.
“I couldn’t go to school. Polio was so feared. ... Even though people were told how it was transmitted, they were still afraid. We became pretty isolated.”
Part of the reason Marilyn couldn’t go to school was because of the stairs. She couldn’t climb them. The lowest point, she says, was when she fell in a class and the teacher wouldn’t help her up. And here’s the heart of the matter:
“I was exactly the same person the day before polio as I was the day after polio. But others treated me differently.”
That realization defined Marilyn’s life and her work.
“I know going from a healthy, ordinary kid overnight to a social isolate I’m sure that gave me great empathy with others who — because of the color of their skin or their religion or disabilities or sexual orientation — are also seen in an unfair way.”
Marilyn has been a lifelong community volunteer. She served on the school board and, for 20 years, was the executive director of the Idaho Human Rights Commission, an independent state agency that protects people from illegal discrimination.
“We walk into (a grocery store) and the door opens. (Figuratively speaking), we forget that there’s a group of people for whom that door doesn’t automatically open. It’s called ‘unearned white privilege.’ We didn’t earn it; we’re white, the doors open in many places. For Muslims or African Americans, in certain places, they might not open at all.
“I am horrendously bothered by the disparity between rich and poor, both in the United States and throughout the world. It makes me ill. So many people live on just a dollar a day; children are hungry. It’s shameful. It’s not right. If all of us did just a little bit, we could turn it around.”
She has an enormous respect for people who work to benefit others, like the Rotarians, who have a goal to eradicate polio worldwide.
“They started this (program) after polio was gone in the United States. All U.S. Rotarians are doing something that will benefit children (in India, Pakistan, Afghanistan, Nigeria — the countries in which polio remains a threat). They’ve raised huge amounts of money to benefit people they will never see.
“(Although) it does benefit us, because it does feel good to help somebody.”
She chuckles, for in an odd twist, people take pleasure in helping her. But still she thinks of others less fortunate.
“I’m in a scooter, having a hard time, and people are courteous because it’s very obvious I need help. But I wonder what it would be like if I had a mental disability? I could have walked in, feeling like committing suicide, and no one would know because it’s so hidden. It isn’t as easy to be of assistance.”
There were times in her life that Marilyn could more or less forget that she had polio. She used to walk to the YMCA every day at lunchtime to swim.
“All of a sudden, I was realizing that was too hard to do. I was noticing I couldn’t do as much, and I went downhill from there. I had it checked out, eliminating other causes. It was post-polio syndrome.”
She was 40 years old.
The body has an amazing ability to recover from a virus like polio. It rewires the polio-damaged nerves but the “rewiring” is neither as plentiful nor as strong, and it simply wears out with age. There is no exercise, no surgery and no medication that will slow down or stop the degeneration.
“I normally don’t talk about myself. The reason I (am) is because if there is somebody out there who might read this and think, ‘Oh, she looks disabled. But she still goes out.’ Or maybe they’ll think, ‘If she can lead an ordinary life, I can, too.’
“I’d feel good if one (disabled) person thought: ‘Nobody’s going to look twice at me — and if they do, it doesn’t matter.’ (Because) it’s mental. It’s how you feel about yourself. That’s a huge lesson.”
Marilyn now has to use a wheelchair all the time.
“You can change what you can change and you can’t change what you can’t. You have to be comfortable with who you are.”
As Marilyn has gotten older and her physical abilities fewer, her commitment to the world has remained firm.
“I feel a real respect — and have for a long time - to the community. I’m part of the community. I am doing more to make sure I’m putting my oar in. ... I’m very interested in philanthropy as one way to help projects where I can’t put in the physical labor.” She quotes her favorite saying from the Anne Frank Human Rights Memorial, where she is a volunteer. It’s by Dr. Seuss:
“Unless somebody like you care a whole awful lot
Nothing is going to get better, it’s not.”