In This Issue:
Spokane Polio Outreach Meeting Notes
“Go-Karts and Such,” by Elinor Young
President Franklin Delano Roosevelt: A Disability Hero
Copyright information
Spokane Polio Outreach
Meeting notes
The monthly meeting of Spokane Polio Outreach was held on Tuesday April 25th, 1995 at 6:30 PM in the Shriner’s Hospital auditorium.
A group of about 50 were seated in a large circle to facilitate the planned discussion. It was noted that approximately 10 people were new to the group.
Dave Graham was the discussion leader and after a brief business meeting he laid out a few goals for the evening’s discussion activity.
As we got going, three polio survivors shared their experiences with their initial bouts with the disease. Although different in many aspects such as age, dates and places, their accounts had showed a pattern of symptoms, diagnoses and treatment. Mentions were made of the wool hot-packs, the isolation facilities and the feelings of dismay as children and parents dealt with a medical system that was archaic by today’s standards.
In an effort to define terms and promote understanding Dave read from current articles, defining Post Polio Syndrome and the scope of the problems we are now facing. In discussing the diagnostic criteria, symptoms and percentages were introduced. The group participated in a show of hands for each polio survivor now experiencing certain symptoms. The demonstration bore out these findings.
Those suffering from: Fatigue – 89%, Pain in muscles or joints – 86%,
New weakness – 83%.
The articles stated that only 28% of polio survivors experienced new atrophy. Our show-of-hands proved that to be low. At least 40% of our group had new atrophy.
Again, discussion showed us that even though we are all quite different in the way we have experienced our initial bout with Polio and also our Post-Polio Syndrome, our symptoms are very characteristic of one another.
With that the discussion moved to the questions of coping and adapting. Many shared experiences and with it came the empathy of the others. Items of discussion included sleep disorders, pulmonary (breathing) dysfunction, swallowing, eating and elimination problems as well as fatigue, pain and daily living difficulties.
Linda Scott, our librarian, was a prominent part of this conversation as she shared the resource material that was available in the library. During the discussion she was able to zero in on specific problems and direct us to specific journals of experience and remedy. She makes those available by mail to our house-bound readers. Her phone number is (509) 328-9044.
It was noted that new Post Polio symptoms are often seen after an illness or an injury.
Alex Looms shared his problems with his friends and acquaintances not accepting his disability because he has no visual evidence of it. He also told about his experiences with Social Security.
The discussion concluded at 8:10 PM, adjourning to library and fellowship time.
Dr. Joseph will be with us for our meeting on Tuesday, May 23rd. All are welcome!
Go-Karts and Such
by Elinor Young
I was reading a diary entry to a friend. That’s all. And I couldn’t finish. Suddenly I was crying. I didn’t mean to and certainly didn’t want to. I was reading it to Vickie just because I thought it was an interesting peek at a day that had been wiped from my memory. I hadn’t cried when I read it to myself. What happened?
The diary is one by brother found upstairs in Mom’s house, in my old bedroom. My diary. One I wrote when I was 13 years old. The entry says, “June 6, ’61. I’m trying to figure out what I want for (8th grade) graduation. I want a soap-box (car) or a Go-Kart, but they cost too much. Wish I had something to run around with like the kids do with their bikes.”
I cried when I began to read aloud the words of that last sentence. Words I would not allow myself to say when I wrote them. It would have been “complaining” or “feeling sorry for myself,” and I couldn’t allow that. I couldn’t allow anyone to know that I did feel different. And that it hurt.
It hurt deep, to the bones, to be left out of simple normal pleasures and games that my siblings and peers enjoyed. But I couldn’t say it. Much less cry about it. Not then. It might somehow weaken me. Weaken my ability to make people forget that I was different, and to prove that there wasn’t anything that I couldn’t set my sights on. No, I couldn’t risk a crack in the wall. I had to be unyielding to be able to make my way in a “normal” world.
So I couldn’t cry. Not then. I am now. Writing about it makes me cry. Is it OK to cry now? Yes. I need to cry those tears I couldn’t cry then. And I need to cry the tears of today’s losses, tears that are sometimes still trapped by the whispered, “No! Pretend! Be firm!” of that young girl.
I have learned something since I was thirteen.
Denial is weakness.
Confession is strength.
Honesty is power.
Frank tears open the hurt and let the bad pain out. Not all the pain — just the bad stuff. The sticky stuff that keeps me mired. The resentment, the bitterness, the delusion. The pain that is left, the good pain, is that which empathy is made of.
Empathy is born of the good pain — those honest tears that grieve my loss, yet look beyond it to another’s grief. With our tears we connect: fit each other so we can help each other.
But wait a minute. Two drowning people can’t help each other unless one has hold of a life-ring. If you have read my columns before, you know that my life-ring is my relationship with God. He is my source of strength when mine runs out. He is the one with whom I cry the tears many don’t understand. He is the one upon whom I unload the bad pain and from who I craw comfort, the comfort that I can then pass on.
That’s why I can say that some of the pain is good. Incredibly, the word “praise” is even appropriate:
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” (2 Cor. 1:3,4)
By the way, I didn’t get a go-kart and I never was able to ride a bike, but boy, you should see me now, free- wheeling my scooter down hills! You see, sometimes the comfort is a view of the eternal perspective and sometimes it is showing me other ways to have fun. Want to go scooter riding with me?
President Franklin Delano Roosevelt:
A Disability Hero
WASHINGTON — Senate Majority Leader Bob Dole today made the following remarks on the floor of the U.S. Senate in honor of the 50th anniversary of FDR’s death on April 12, 1995:*
As many members of the Senate know, it is my custom to speak each year about a disability subject on April 14th. It is the date I was wounded in World War II and joined the disability community myself. This year we will be in recess on April 14th, so I will give my annual message today.
I will talk about another member of the disability community–certainly one of its most prominent members. But throughout his life, his disability was not only unknown to most people, it was denied and hidden.
I am speaking about President Franklin Roosevelt. Next week, the nation will commemorate the 50th anniversary of his death on April 12th, 1945. He will surely be recalled by many as a master politician; an energetic and inspiring leader during the dark days of the depression; a tough, single-minded Commander-in- Chief during World War II; and a statesman.
No doubt about it, he was all these things. But he was also the first elected leader in history with a disability, and he was a disability hero.
FDR’s Splendid Deception
In 1921, at age 39, Franklin Roosevelt was a young man in a hurry. He was following the same political path that took his cousin Theodore Roosevelt to the White House. In 1910 he was elected to the New York State Senate, and later was appointed Assistant Secretary of the Navy. In 1920, he was the Democratic candidate for Vice President.
Then, on the evening of August 10th, while on vacation, he felt ill and went to bed early. Within three days he was paralyzed from the chest down. Although the muscles of his upper body soon recovered, he remained paralyzed below the waist.
His political career screeched to a halt. He spent the next seven years in rehabilitation, determined to walk again. He never did. He mostly used a wheelchair. Sometimes he was carried by his sons or aides. Other times he crawled on the floor.
But he did perfect the illusion of walking–believing that otherwise his political ambitions were dead. He could stand upright only with his lower body painfully wrapped in steel braces. He moved forward by swinging his hips, leaning on the arm of a family member or aide. It worked for only a few feet at a time. It was dangerous. But it was enough to convince people that FDR was not a “cripple.” FDR biographer Hugh Gallagher has called this effort, and other tricks used to hide his disability, “FDR’s splendid deception.”
This deception was aided and abetted by many others. The press were co-conspirators. No reporter wrote that FDR could not walk, and no photographer took a picture of him in his wheelchair. For that matter, thousands saw him struggle when he “walked.” Maybe they didn’t believe or understand what they saw.
In 1928, FDR ended his political exile, and was elected Governor of New York. Four years later, he was President. On March 4th, 1933, standing at the East Front of this Capitol, he said, “the only thing we have to fear is fear itself.” He was 35 feet from his wheelchair. Few people knew from what deep personal experiences he spoke.
Perhaps the only occasion where FDR fully acknowledged the extent of his disability in public was a visit to a military hospital in Hawaii. He toured the amputee wards in his wheelchair. He went by each bed, letting the men see him exactly as he was. He didn’t need to give any pep talks–his example said it all.
FDR:A Disability Hero
Earlier I called FDR a “disability hero.” But it was not for the reasons some might think. It would be easy to cite his courage and grit. But FDR would not want that. “No sob stuff,” he told the press in 1928 when he started his comeback. Even within his own family, he did not discuss his disability. It was simply a fact of life.
In my view, FDR is a hero for his efforts on behalf of others with a disability. In 1926, he purchased a run-down resort in Warm Springs, Georgia, and over the next 20 years turned it into a unique, first class rehabilitation center. It was based on a new philosophy of treatment–one where psychological recovery was as important as medical treatment.
FDR believed in an independent life for people with disabilities–at a time when society thought they belonged at home or in institutions.
Warm Springs was run by people with polio, for people with polio. In that spirit, FDR is the father of the modern independent living movement–which puts people with disabilities in control of their own lives.
He also founded the National Foundation for Infantile Paralysis–today known as the “March of Dimes”–and raised millions of dollars to help others with polio and find a cure. On April 12th, 1955, on the 10th anniversary of his death, the March of Dimes announced the first successful polio vaccine, engineered by Dr. Jonas Salk. Today, polio is virtually extinct in the United States. Next week, the March of Dimes will celebrate the 40th anniversary of the vaccine in Ann Arbor.
In public policy, FDR understood that government help in rehabilitating people with disabilities is “good business”–often returning more in taxes and savings than it costs. It is unfortunately a philosophy that even today we often pay more lip service than practice.
Disability Today and Tomorrow
Our nation has come a long way in its understanding of disability since the days of President Roosevelt. For example, we recognize that disability is a natural part of life. We have begun to build a world that is accessible. No longer do we accept that buildings–either through design or indifference–are not accessible, which is a “keep out” sign for the disabled.
We have come a long way in another respect–in attitudes. Fifty years ago, we had a President, Franklin Roosevelt, who could not walk and believed it was necessary to disguise that fact from the American people. Today I trust that Americans would have no problem in electing as President a man or woman with a disability.
Let’s not fool ourselves–this work is not done. Not by a long shot. And I think this is something that we can all agree on, Republican or Democrat.
So, next week, as we honor President Roosevelt, let us remember him as a disability hero and dedicate ourselves to this unfinished business.
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*Subj: Senator Bob Dole Lauds President Franklin Roosevelt FOR IMMEDIATE RELEASE Contact: Clarkson Hine (202) 224-5358
Tuesday, April 4, 1995