Living With Polio



One: I had polio at 23 and was married at 25. I had one daughter and two sons. I wore a white cotton support garment with shoulder straps and laces that expanded with girth. I also wore a right leg brace. Now, I wear braces on both legs, because with time my left (good) leg wore out.

As babies mature, they can move more quickly than Mom. I received a Zip-a-babe® (1960s; sometimes available on e-Bay) as a gift, and it was the best I ever received. I had one in the highchair and one in the stroller. Start using it early and they never resist it. The device makes it impossible for them to stand up; they don’t even try. (Here are the instructions for use which may help you make your own. Adjust waist and shoulder straps to size; Zip up the back; Fit Adjustable side straps to high-chair, carriage, or extend completely for use as reins for walking.)

I also used a playpen which my children loved. It gave them freedom to play with their toys. As a polio person, it will be impossible to keep up with small children, so use products that will keep them close and safe.

Two: I was completely paralyzed from during the first days of my life. With extensive therapy, I recovered. I care for my supremely congenial grandchild who at six months was lifting his arms and standing which helped me in any lifting activity. My best device is an umbrella stroller that I use to move the baby from room to room, so I don’t worry about tripping if I carried him. Because I am not able to rise from a chair while holding him, I keep the stroller nearby at all times.

Ann Hughes, Illinois

My Disability Made Me a Better Mother

Dear Daughter,

As you think about becoming a mother yourself, there are a few things about what being a mother has meant for me that I would like you to know.

In my process of growing up and starting to live my own life beyond the narrow expectations of my parents, becoming a mother was the most daring and profound choice I made. It was also the most rewarding.

As you know, at the age of three and a half years I contracted polio. My parents were told by some local people in their small community just north of the Arctic Circle in Norway that they must have sinned and that God sent them my polio to punish them. My mother strongly denied that idea. My polio, she argued, was a blessing in disguise. But my disability also became a key aspect of HER life narrative, a story about faith and doubts, struggle, grace, and submissiveness.

Many old feelings of love and hurt come up when I think about my mother. I called her “Mamma” all her life. Her hugs were giving. I remember that she let me come into her bed and put my cold polio leg between her warm legs until I was ready to go back to my own bed and sleep.

Before I started working to have my first child, I had studied a fair amount of developmental child psychology. While I loved my mother deeply, I had also started realizing that the way she cared about me did not empower me, encourage me, or even validate me as an independent and strong woman with power and personal agency. I decided to be a very different mother than my own mother had been for me.

I was determined that I would try not to limit my daughters in that way. From your early life, I wanted you and your sister to have the opportunities to make choices, to realize your potentials, and to feel your own power with all the support and encouragement I could give you.

When, as a married woman, I started working on becoming pregnant, my mother told me not to do that. I asked her why, and all she was able to tell me was that it would not be easy or good for me. Since I was already wondering if my polio would somehow have a negative impact on the baby, I went to a doctor for advice. He made me feel like I was worrying about nothing. It was reassuring in a negative sort of way.

As my first pregnancy progressed, I realized that I was afraid of the birth process, and that if I could not get over some of that fear then my body would be so tense and uptight that the birth might become more difficult than it needed to be. So I started painting. I painted images of tranquil openings.

When your older sister was about six months old, I went alone to Norway to show her to my parents and other family. I brought her along in a small, simple stroller and managed to bring her and my luggage with me there and back to the U.S. At the time I was wearing a brace, and I had not yet started using crutches, but I was not as strong physically as I had been before the pregnancy. My mother saw that I was strong enough to do this, but as usual, she worried about me more than she admired me.

When I studied child development in graduate school, I came across research suggesting that newborns smile more at a human face than any other image placed in front of them. And I found that both my babies paid attention and smiled at me very soon after birth. This positive reaction to me, I decided, should remain the basic tenor of my relationship with my daughters forever. In every way, I wanted to be the most positive thing in their lives.

Adults run after children to keep them safe or to control them all the time. I still see parents running after their children. Just calling their names does not work; the children do not pay enough attention to that. As a disabled mother, I knew I would not be able to function that way—I could not run after you girls. I had to find another way to ensure my daughters’ safety. Here the story becomes quite complicated.

To remain a truly positive thing in your lives, I decided to use all the creativity I could muster to keep your positive interest in me, so you would come to me when I called you. Instead of telling you “no” or “stop,” I used redirection. That is, I got you to switch your attention to me because I said or did something I thought you would find funny or interesting. It is amazing how well that worked. I realize it is also a form of control. But I paired it with some other equally basic ideas.

Frequently, I observed parents demand that their young children sit still and keep quiet in situations where that did not seem necessary. They were often the parents that did the most running after their kids, grabbing them and putting them back in a chair with nothing to do. If I knew that I had to keep you girls close by, I explained to you why that was, and I brought along something for you to do.

If we were waiting for a long time in, for example, an airport, I would let you wander off freely as long as you could see and hear me. I told you to come right back if you were scared of anything like strange pets or other aggressive children. So from the earliest possible time, I created situations where you had some clear freedom to self-regulate your behavior. And when I called you back, I made sure that I was again the most positive and interesting thing around.

I think that having a disability caused me to become a better mother. Not that you need to be disabled to do what I did. But since I wanted my daughters to be safe and I could not run after them, I had to find another way to bring them back to me. And since I also wanted them to grow into independent and strong woman with power and personal agency, I had to give them early chances to be in control of their behavior and emotional reactions to the world around them.

I have been both a daughter and a mother, and it is hard for me to keep the thoughts and feelings separate. I hope one day that you, baby girl, get to understand this too, because you have said you wanted to be a mother and I know you will be a good one. And I want you to know that I did love my mother, but that I figured out how to love my daughters the best I could, and that the connecting part is how every day I love myself more and more too.

Love, Karen

Karen Hagrup, artist, anti-ableist, progressive visionary and activist, lives with her life partner, Barbara, in St. Louis, MO, where she gardens, writes, laughs out loud, and devotes much of her retirement, in part through volunteer work for Organizing for America, to making the world a better, safer place for everyone.

Tags for this article:
Mental Health