I only know two of the 30 authors. One is a good friend; one was a highly respected disability rights leader who has since passed away.
The following essay is now officially Chapter One. Future chapters, each written by a separate author, will be published intermittently over the coming months, as authors come forward and provide permission.
This first treasure was sent to us by the late Irving Kenneth Zola (1935-1994). His piece is also published on his homepage.
WHY MARCIA IS MY FAVORITE NAME
by Irving Kenneth Zola
There was no other word for it. My friends were just pushy. I knew they meant well, but the last thing I wanted to do was go to a dance, especially in my condition. ‘In my condition.’ The words rankled. If I just looked at myself in the mirror, I felt okay. Not bad looking. No adolescent acne. Some people even said I had nice eyes. But I was most pleased with my face–no peach fuzz. I stroked my cheeks. This 5 o’clock shadow felt like one of the few good inheritances from my father’s side of the family. Besides, the idea of having to shave every day made me feel masculine, a virile 16 1/2. But if I stepped back, the rest of my image undid me. I didn’t feel strong leaning on these two crutches and dragging myself around at a snail’s pace. And though I knew I’d improve somewhat, my doctor had been brutally honest. “The 1951 Red Sox will have to do without you…Contact sports are out. You’ll never run a race again nor will you ever walk unaided.” Such was my polio legacy.
The phone was ringing. Maybe I could tell Zummie and Hank that I wasn’t feeling well. Besides, it was a long schlep down the stairs and perhaps even harder to get into the Community Center. But as I hopped to the phone, I knew they wouldn’t buy it. They’d already worked out how, if necessary, they’d carry me up the stairs. “But I’ll be embarrassed,” I argued. “Bullshit,” they eloquently countered.
The phone call set the time. They’d be by to pick me up at 8. For the tenth time I went into the bathroom to comb my hair. I felt like an ass. It was as if this was the only part of my body I could control. “How do I look?” I asked as I made my final appearance in the hallway. My mother stopped washing the dishes and smiled, “Very handsome.” My father shook his head in agreement and came over to give me a few dollars of spending money. My younger brother Michael just giggled. When the bell rang and I turned to go, they all kissed me good-bye, told me not to stay out too late but, thank God, they didn’t tell me to “Be careful.”
My friends were at the door. A little too ready and eager, I thought to myself. It was easier to go downstairs if I didn’t have two crutches under the same arm, so I asked Zummie if he’d take one. Then leaning on the railing for support, I began the slow descent down the four flights from our apartment.
Once in the car, I asked who was going to be there. “Oh, the usual crowd” was the reply, and we began to joke about the likelihood of any “action.” The trip was quick–less than fifteen minutes.
As I slowly climbed the stairs to the Community Center, I realized that no one was paying much attention. Perhaps with no visible scars, people just thought I’d had an athletic injury. The first few minutes were easy. As we settled in a corner, others came by to say “Hello!” “Good to see you again!” “How’ve you been?” The questions required little of me. “Okay.” “Thanks.” “Fine.” I answered with a smile. But down deep I was wondering what the hell I was doing here.
I could hear the music playing but I certainly wasn’t in a hurry to follow it. I would have been content to just sit on the staircase but the casual, “C’mon, let’s see what’s doing!” dashed that hope. Using the banister for support, I was back on my crutches. I wondered where in the dance hall I could hide. But when we got there a moment later, I realized it wasn’t necessary. I was hardly the only guy not dancing. In fact, relatively few of my friends were. All of us milled to one side, looking over the girls, commenting on who was dancing with whom, who that new girl was and wow did that one look great in a tight sweater.
Almost imperceptibly conversation turned to next week’s big event–a 
weenie roast down Nantasket Beach. “Sounds like fun,” I said.
“Who are you gonna take?” asked Zummie.
“My mother,” I answered sardonically.
“C’mon…seriously,” chimed in Hank.
“I hadn’t thought about it.” It was a lie. I’d been thinking about it for weeks but it had been a long time since I’d been out on a date. It didn’t seem fair to call up a girl out of the blue. I wasn’t so much afraid that she’d say “No” but that she’d accept out of pity or worse, ignorance of what she was getting into. I felt girls should at least see me face-to-face before going out. For these reasons I wouldn’t let my friends fix me up.
“Why don’t you take Marcia?” suggested Zummie with a not so believable innocent air.
“Who?” I asked.
“Marcia. You know, the one over there with the frizzy hair.”
I looked over in the direction he was pointing. She was dancing with another girl. At least that meant she didn’t have a steady. I looked at her very closely. She was cute–brown curly hair, freckles, nice Jewish nose, and a figure which showed off quite well in a short sleeve blouse.
“She doesn’t even know me.”
“Sure she does. She was even asking about you.”
“Bull,” I said. Part of me wanted to believe, but I let it go. So did my friends. In reality none of us did. We were merely biding our time.
After what seemed like a decent interval, I asked, “What did you say that girl’s name in the green blouse was?”
“Marcia, you dumb asshole,” answered Hank.
Subtlety was clearly going to get me nowhere. “How do you know that she’s interested in me?”
“Contacts,” he winked.
“What if she says ‘No’?”
“She won’t…You’re too cute,” said Gerry who’d been standing on the edge of our threesome. I tried to hit him with my crutch but I missed.
“What have you got to lose?” asked Zummie.
Everything, I thought to myself. But somehow the pressure was difficult to resist. I knew my friends really cared about me and wouldn’t have set me up for a fall. So, ambivalently, I hopped over to where she stood talking with a girlfriend.
“Marcia?” I interrupted.
She turned to me smiling. Five minutes after we’d spoken I had no recollection of what I’d said! All I knew was that she’d accepted my invitation and I’d agreed to call during the week to make final arrangements. I was so excited by her reply I didn’t even think to spend the rest of the evening with her. Maybe I thought if she got to know me better, she’d change her mind.
During that week panic set in. Amongst the arrangements I thought of making was calling the thing off. The whole situation was crazy. She didn’t know me. I didn’t know her. Besides a weenie roast was a hell of a way to have a first date.
Somehow the seven days passed and Saturday night was here. Again my parents were solicitous. But when my mother told me to bundle up, I got very upset.
“But it’s nearly 80 degrees out there!” I snapped.
Undeterred she went on. “Still you never can tell…When it gets late, you might get cold.”
Her remark sparked in me a minor anxiety attack. In it I saw a veiled reference to the fact that Marcia might possibly go off and leave me alone. It’s happened to other guys before, I thought to myself. Only my 8-year-old brother’s query, “Why can’t I go along?” kept me from exploding. That weenie roasts were only a place for big boys sent him away in a huff but allowed all of us to laugh anxiously.
My friends soon arrived and off we went to pick up Marcia. Luckily it was the style of the time to announce one’s arrival with a beep of a car horn. Thus I was spared having to climb the stairs to her house and meet her parents. I didn’t know what they would or would not ask me. I just didn’t want to deal with any questions. Marcia quickly bounced down the stairs and squeezed in beside me. The long ride to Nantasket passed quickly as we talked about previous jobs, friends, school, plans.
My sense of ease was broken when we encountered the beach. I’d forgotten about the sand and how difficult it was to keep my crutches from slipping and me with them. Marcia went first. With guiding remarks like, “This place looks solid enough to lean on,” we finally made it to the bonfire. I didn’t feel like moving any further so I suggested a nearby spot for the blanket. When she spread it out, anchoring the corners with rocks, I tried to ease myself down. It was no use. The trek from the car had exhausted me so I somewhat ungracefully plopped to the ground.
Only then did I realize how difficult it was going to be to play the manly role–coming back and forth with drinks and food. But Marcia spared me. “What would you like on yours?” she said, jumping to her feet. It was only then I let myself really look at her. She was wearing shorts and a halter with a pullover tied around her waist. She looked lovely but all I wittily could say was, “I’ll take the works.”
The early evening passed in talk, food, and songs but as the fire died down,
couples began to take their blankets and drift away. A sea breeze wafted across the water. Awkwardly I put my arm around Marcia to fend off the cold. At least that would be my excuse if she pulled away. But she didn’t. Someone turned on their portable radio. As romantic music filled the night, I whispered, “It’s beautiful enough to dance to and you are beautiful enough to dance with but I…”
She interrupted me with her lips, answering in that kiss far more questions about myself that I had ever imagined I was asking.
copyright Irving Kenneth Zola
At the time of his death, Dr. Zola was the Mortimer Gryzmish Professor of Human Relations at Brandeis and president of the Eastern Sociological Society. He had taught at the Brandeis campus in Waltham, Mass., since 1963, and formerly headed its sociology department.
Professor Zola [had] polio when he was 16, and used canes and braces to help him walk. His disabilities were increased by injuries suffered in an automobile accident when he was 19.
Discussing ways to enhance the self-esteem of the disabled, Professor Zola said in 1988, “Until we own our disability as an important part, though not necessarily all, of our identity, any attempt to create a meaningful pride, social movement or culture is doomed.”
His writings included an autobiography, “Missing Pieces: A Chronicle of Living with a Disability,” published in 1982. He edited “Ordinary Lives: Voices of Disability and Disease,” a 1982 anthology that was praised as a diverse collection of fictional and personal accounts.
He was a founding member and counselor at the Boston Self Help Center, an advocacy and counseling organization for people with chronic diseases and disabilities. He served as the center’s executive director from 1982 to 1987.
He was also chairman of the medical sociology section of the American Sociological Association, a consultant to the World Health Organization and a member of President Clinton’s transition team on health care. He won numerous awards, and was a fellow of the American Association for the Advancement of Science.
He was born in Boston, graduated from Boston Latin School and received a B.A. from Harvard in 1956 and a Ph.D. from Harvard in 1962. (Eric Pace, The New York Times, December 8, 1994)
Stay tuned for future glimpses into the younger days and adventures of polio survivors in Chapter Two of…
We discovered that crowdfunding was the answer. After 11 months of fundraising, we are delighted to announce our success. I now have a wonderful wheelchair accessible van that will keep me on the road for years to come. Our team witnessed many little and large miracles and blessings along the way and came to know more deeply that reaching out for help is nothing to be ashamed of. In fact, we became more inclined to believe that the word HELP can stand for Hello Eternal Loving Presence! 
It’s titled, A Polio Survivor’s Guide: Funding Resources For Medical and Adaptive Equipment. Now published on Post-Polio Health International’s website (see link below), the list is available and ready to be used by not only polio survivors, but anyone who has a disability. 
Very little about any possible funding is known or ever shared with polio survivors. There may, however, be a variety of sequestered financial resources that do exist and are available for polio survivors who need to purchase medical equipment. 
