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Monday, June 5, 2017

Colleen’s Story: her life with polio: childhood to retirement, A Remarkable Life Remembered. RIP May 13, 2017

Colleen’s Story: Part I – My Childhood Years in 1941 contracted polio | March 21, 2012 
(posted Jan. 2015)


By Guest Blogger Colleen M. Feldman | shared by Disability.gov

This is the first in a three part series by Colleen M. Feldman, who contracted polio in 1941, just prior to her 13th birthday. In this post, she describes her childhood & teen years living with polio and her rehabilitation. The next two posts in the series will address her experiences later in life as a wife and mother with a disability raising three children, and eventually entering the workforce. Mrs. Feldman brings a unique perspective to Disability.Blog, having lived with a disability more than 50 years before the Americans with Disabilities Act (ADA) became law. She is also the mother of Disability.gov’s Content Manager, Robert Goldstraw.

I am 83 years old, and last year marked my seventh decade of living with a disability. During the “dog days” of the summer in 1941, I became infected with polio, just a few days before my 13th birthday. To this day, I remember it all very well – the high fevers, headaches, neck pain, sore throat and not being able to raise my head up. I remember my father at my bedside, looking like a very old, worried man, when he was probably still only in his 40s, and the doctors coming to my home to tell my parents what was “wrong with me”– labeling it everything from sun stroke to “growing pains,” and one simply saying, “I don’t know.”

After three weeks at home flat out in bed with no real medical care, on August 25, 1941, I was taken to Children’s Hospital in Baltimore. They put a card at the head of my bed that read “acute poliomyelitis.” I was actually happy to be able to tell my parents what was “wrong” with me. By then, I’m sure they already knew, but they seemed shocked to hear me say it. I don’t remember signing my name on any dotted line or some official document, but everyone kept saying – “she ‘contracted’ polio.” During that time, my dad was making plans for a motor trip to Kentucky. His relatives warned him not to come, because of this dreaded disease called poliomyelitis spreading throughout the south, not realizing at the time that his baby daughter had been infected with this very disease.

I was paralyzed from the neck down and put in a Bradford frame – right arm in a splint, a collar around my neck and my legs in shell-like casts with a bar between them to keep them separated and my feet held in place. I remember seeing a long list of figures written in red on the doctors’ clipboard. I later learned that red wasn’t good – it meant a level of weakness below what the goals were. One day, I took the neck collar off. It had an itchy wool cover on it, and I hated it. I showed everyone that I could lift my head off the bed. It was removed, and I never wore it again.

In the 1940s, the physical therapy I received consisted of a sun lamp and massages with cocoa butter cream. I still love the smell of that, but hate the smell of ether. A woman would come to our home three times a week and massage my legs and right arm. She was a kind, gentle woman who would tell me about her other patients. She connected us through correspondence, and at one point, I was writing letters to more than 70 people affected by polio.

That summer, several weeks before I came down with polio, my father bought me green bike from Sears. He took me along and let me pick it out. It was beautiful. Needless to say, it was like new when I went to the hospital, and not long after that, a neighbor approached my dad to ask him if she could buy it for her daughter. After all, she figured the girl with polio had no use for it! My dad was not known for his diplomacy, but they told me that was shown at that moment. I never did ride that bike again. No more bike riding, ice or roller skating or running through the woods with my big dog, Teddy.

In a few years, I went from a child to a young lady, started to wear lipstick and put ribbons in my hair. With my left hand, I would brush my black hair straight up against the white sheet. I had blue eyes and black hair, and people said I was pretty. I always felt that such compliments were given because people felt sorry for me, but I went from the “ugly duckling” of the three girls to a pretty teenager. My mom used to say, “Your sisters will have many, many dates and boyfriends, but the one who likes you, will like you for who you are.” As it turned out, that proved to be true.

Despite the compliments, there were certainly some ugly things said and discrimination, too. The mothers of some of my classmates burned my letters. They told me not to write anymore – they feared “catching” polio from my letters. It got back to my mother that a woman she knew had said polio was caused by “uncleanliness,” which hurt her very much. (The same woman who said these things also said that a wealthy, “upper-class” woman in our home town had a child come down with polio the following year.) Only two boys and one mother of a classmate visited me, and I never reconnected with my classmates after seven years of being together.

From August through December of that year, I was in the hospital. Much of my time was spent listening to the radio, singing along with popular singers of the day like Sarah Vaughn, Ella Fitzgerald and Eartha Kitt. To this day, I remember FDR’s announcement of the bombing of Pearl Harbor on the radio. (Roosevelt, too, had polio, and one of his biographers called his attempts at hiding his disability his “splendid deception.”) I will never forget that I had visitors in the room that day, and dad asked us all to be quiet, as that somber voice came over the radio announcing the attack. I remember later saying Pearl Harbor and I got “attacked” the same year. Just before Christmas, I said I would “tie sheets together to get out the window to go home,” and a few days later, I was discharged.

Back at home, it was a very difficult time for my mother. Our dining room was turned into a bedroom for me so I could be on the first floor. Over time, with physical therapy, I was measured for braces, orthopedic shoes and crutches so I could learn to walk again. The heavy, steel-leg braces back then were nothing like the lighter, “high-tech” ones of today. Years later, I would walk without them with a limp and serious drop-foot in both feet. I never regained the muscles in my feet, and had a surgery called posterior bone-block to help with that.

My schooling was interrupted for close to two years, and when I returned to school, I had to repeat the last half of the seventh and eighth grades and then, was off to high school. My dad again stepped forward and took me for an interview to a very small, all girls private school. I wore slacks to hide my braces. I was told by the principal, “You will not wear slacks to this school young lady.” That “cured” me of being ashamed of my braces.

My father stands out in my mind as a very strong influence in my life. He always described me as strong, brave and beautiful – after awhile I began to believe it! I never wanted to show feelings of weakness for fear of disappointing him, having always felt protected by him and his strength.

In those days there were no accessible movie theaters, social halls, churches or other places for me to go to socialize, and certainly no curb cuts for those who used wheelchairs – nothing was accessible! So my dad looked for other things for me to do. He would drive me to Ft. Meade, Md. with a USO group to sing for the WWII soldiers, and even tried to get me on the Arthur Godfrey Talent Show. (I’m sure most of you are way too young to remember that show!) I even sang “Together” live on a local radio program for teens.

# As posted at Disability.gov
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Colleen’s Story: Part II – Marriage, Raising a Family & Going to Work - her experiences in life as a wife and mother with a disability raising three children, and eventually entering the workforce.

By Guest Blogger Colleen M. Feldman

This is the second post in a three part series by Colleen M. Feldman, who contracted polio in 1941, just prior to her 13th birthday. In this post, she addresses her experiences in life as a wife and mother with a disability raising three children, and eventually entering the workforce. Mrs. Feldman brings a unique perspective to Disability.Blog, having lived with a disability more than 50 years before the Americans with Disabilities Act (ADA) became law. She is also the mother of Disability.gov’s Content Manager, Robert Goldstraw.

At the age of 20, I married and subsequently, had three children. My generation of women didn’t seem to be motivated to enter the world of work, so I was reasonably content to be a housewife/homemaker. But when it came time for high school and college for my children, I began to think seriously about looking for a job.

At the age of 34, I went job hunting, and had my first of many experiences with employment discrimination. I would go to job interviews where it was openly talked about that the reason I wasn’t a “good fit” was because of my disability. I was bluntly rejected by two large companies. One personnel manager asked me, “Do you honestly think you could handle a job?” I clearly remember saying, “Do you honestly think I would waste my time being interviewed if I thought I couldn’t?” I was hurt and angry. I came home and furiously shampooed a rug on my hands and knees – that rug had never been so clean!

I was advised to go to the state vocational rehabilitation (VR) agency for an interview and testing. Through VR, I was eventually hired by the Maryland Motor Vehicle Administration. I worked in state government for 23 years and retired with a pension and good benefits. Yet even there, in a state government job, I experienced what I’d call harassment and discrimination by a supervisor. Things hadn’t changed much by 1980 it seems. One day, my supervisor asked me to pick up some heavy charts and medical records and bring them to her. After I did, and she said, in the presence of others, “I just wanted to see if you could do it.” I was so humiliated and embarrassed. Back then I don’t think many knew what, if any, actions could be taken when subjected to that kind of harassment and discrimination at work.

After the 1940s, I never once saw a doctor for polio again until the 1980s. I attended a meeting of people who had been living with polio for many years. It was held in the same hospital I had been in as a young girl. All sorts of medical professionals were there – doctors, nurses, social workers, psychiatrists, psychologists and physical and occupational therapists. I walked out of that meeting and sat in the hallway as they discussed Post Polio Syndrome. Aggravated, I said, “There’s nothing ‘wrong’ with us, we’re just worn out from trying to act how you think is ’normal.’” Everyone within ear shot agreed with me. We pushed ourselves. I knew many people with polio from my three lengthy hospital stays, a social club and three years at a camp (Camp Greentop in Thurmont, MD) for children with disabilities. We were all considered “type A” and over achievers.

Throughout my 40s, I continued to work, but did not drive. One morning, I woke up to an announcement on the radio saying, “We excel at teaching older and disabled people how to drive.” I made an appointment with the company and the rest is history. I learned to drive with hand controls and continue to drive to this day at the age of 83. It’s a privilege and I am grateful that I am still able to drive, and for the technology that makes it possible.

*As posted at - Disability.Blog, the official blog of Disability.gov :
http://usodep.blogs.govdelivery.com/about/
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By Guest Blogger Colleen M. Feldman


This is the final post in a three part series by Colleen M. Feldman, who contracted polio in 1941, just prior to her 13th birthday. In this post, she reflects on her life with polio and retirement. Mrs. Feldman brings a unique perspective to Disability.Blog, having lived with a disability more than 50 years before the Americans with Disabilities Act (ADA) became law. She is also the mother of Disability.gov’s Web Content Manger, Bob Goldstraw.
After I retired in 1993, I began going to Florida for the winters. Swimming was part of my therapy, so by the time I hit 65 and was living part of the year in Florida, I was in and out of the pool in colorful bathing suits and matching visors, not ashamed of my legs at all. During the 90s, I fell and broke my hip, and after much rehabilitation, recovered. I later fell and broke my knee. From that point on, I was advised to use a wheelchair. The doctors called me a “fall risk.” I do not feel that I miss out on much by using a wheelchair or scooter. I have a mobile home in Florida with a ramp that lets me come and go independently. And my accessible van still gets me to where I need to go to – I run errands, attend church and volunteer.

When I think back over several decades, I realize that while much has changed for the better for people with disabilities, a lot has remain unchanged. I often find comments and questions by older people a great source of irritation to me. I am asked questions such as, “Who dresses you?” ”Can you stand?” “Who takes care of you?,” “How did you ever have babies?,”“How do you possibly manage since your husband died?” (In 2000, I met a wonderful man, fell in love and married him. He passed away in 2008.) Little do these people know that I had lived alone for 20 years before my second marriage, and I have always found creative, new ways to do what I need to do and live independently!

A woman once approached me while I was reaching for something on a shelf while supporting my weaker arm with the other. She said, “Ain’t it awful to get old?” I said firmly, “Well if that’s the case, I’ve been ‘old’ since I was 13.” I guess she’s still trying to figure that one out. When I need help, I’m not ashamed to ask for it. People say I am “too independent,” and I try to gently tell them I have been through rehab enough times to learn how to do many things – differently than others do them, maybe, but they work for me.

Another behavior I used to experience often when going out to a restaurant with my husband was the hostess would ask him, “Does she want to sit by a window?” And many times when I paid the cashier for my purchases, they would hand the change and receipt to my husband. He got well trained and would put his hands down and ask, “Who paid you?” Though I’ve had many wonderful medical doctors over the years, even these days there are some who, when I am accompanied by my son or daughter, will ask them, “How is she feeling?,” as if I’m not even in the room.

After the 1940s, I never once saw a doctor for polio until the 1980s. I attended a meeting of people who had been living with polio for many years, held in the same hospital I had been in as a young girl. All sorts of medical professionals were there – doctors, nurses, social workers, psychiatrists, psychologists, and physical and occupational therapists. I walked out of that meeting and sat in the hallway as they discussed Post Polio Syndrome. Aggravated, I said, “There’s nothing ‘wrong’ with us, we’re just worn out from trying to act how you think is ’normal.’” Everyone within ear shot agreed with me. We pushed ourselves. I knew many people with polio from my 3 lengthy hospital stays, a social club and 3 years at a camp for children with disabilities. We were all considered “type A” and over achievers.

When I think back over my years as a young woman and adult living with a disability, there’s a lot I am grateful for – the support and advocacy I got from my parents, that I have three loving children and my faith in God that sees me through. I don’t dwell on what I cannot do, I still find new ways to do what I want to do and I am grateful for what I can do. My life is full and I am a thankful person.

Years ago I was quite close to needing an “iron lung,” but I have been told my singing is stronger than ever. (A link to Colleen singing: http://www.youtube.com/watch?v=OQkDr947NPs&list=HL1333487107&feature=mh_lolz.) My hobbies are singing, writing poetry and gardening. I can no longer get down on the ground (or at least not get myself back up!), but I have a raised garden in Florida that is quite accessible. I continue to volunteer in hospitals, assisted living facilities and nursing homes – singing and leading sing-a-longs. I have taken courses at our local community college and learned floral arranging of fresh, silk and dried flowers, and even had a little business going at home in the 1980’s.

Having lived and worked long before there were any laws that prevented discrimination, or required that so many public places be accessible to people like me, or without all the new technologies that let people stay independent, I know what it means to face barriers at every turn. And even now, as when I was a 13 year old girl in the 1940s, one of the biggest barriers out there remains peoples’ attitudes about what I can, and cannot do, and should and should not try to do. There are many inaccurate assumptions about the abilities of people with disabilities. Attitudes, I guess, are not something we can legislate away. My advice is that whatever your disability may be, that you aim high, don’t give in to other’s low expectations and never let anything get in the way of achieving your personal goals and following your dreams.

# As posted at Disability.Gov: http://usodep.blogs.govdelivery.com/2012/04/03/colleens-story-part-iii-retirement-beyond/

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# originally posted on Jan, 25, 2015 

2 comments:

Bob and Bruce said...

My mother, Colleen Feldman, died on May 13. She would have turned 89 this summer. Bob Goldstraw

Jim Watkins, Ability Chicago Info said...

We at Ability Chicago Info are sorry to hear of Colleen Feldman Passing on May 13, 2017. Thoughts and prayers for Colleen's family and friends. But also want celebrate a life filled with so much, and Colleen's sharing the journey with us. I would like to share a poem by Ben Okri "The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering”