From Polio to the Picket Line

United Spinal Board member Denise Mc Quade’s struggle with polio as a child steeled her for the larger struggle of advocating for the civil rights of people with disabilities

By Rob Ingraham

Board member Denise Mc Quade educated United Spinal staff about her condition at a recent “Lunch and Learn” seminar on post-polio.

For most of us, the word “polio” conjures up black and white images from the 1950s: school kids lined up for vaccinations, clumsy metal and leather leg braces, a doctor named Jonas Salk, and a fearsome device known as an “iron lung.”

During the early 1950s, more than 20,000 new cases of polio were reported every year and in 1952 a record 57,628 cases of polio were reported. Thirty-six years earlier, in 1916, a polio epidemic in the US killed 6,000 people and paralyzed 27,000 others. Not even a president was safe from polio. Franklin Delano Roosevelt contracted it when he was 39 and lost the use of his legs. Undaunted, he went on to be elected four times to the land’s highest office. There are many other well-known public figures today that are rarely mentioned as polio survivors: Alan Alda, Judy Collins, Francis Ford Coppola, Mia Farrow, Joni Mitchell, and Neil Young, to name a few.

Post-polio Rising

Technically known as poliomyelitis, polio is actually three distinct types of virus. Once a person is infected, the virus remains in the mouth and throat for about three weeks and then migrates to the intestines where it multiplies rapidly. The virus eventually enters the bloodstream and can pass to the central nervous system. Despite the grim statistics, only about one percent of those infected with the virus suffered motor nerve damage and permanent paralysis. Ninety percent of those infected had mild, or no, symptoms-fever, fatigue, headache, a sore throat, maybe nausea, lasting only two or three days. Another 10% experienced severe headache, pain, and stiffness of the neck and back, but even these symptoms usually disappeared within several days. While relatively few people died or experienced paralysis, communities across the country reacted with dread because no one understood how or why people got it and because children were the most frequently affected.

Thanks to Dr. Salk and his team of researchers, between 1957 and 1959 the incidence of polio in the US fell by nearly 90%. Jonas Salk was, temporarily, more famous than Frank Sinatra. Polio was, and still is, incurable, but the vaccine Salk developed gave the country its biggest sigh of relief since the end of World War II. The last cases of “wild,” or naturally occurring, polio in the US were reported in 1979, among Amish residents who had refused vaccination.

In recent years, however, a new medical condition known as “post-polio syndrome” has been diagnosed. Post-polio appears up to 30 years or more after a person who has had a mild or moderate form of the disease and affects about 25% of all patients with polio. The major symptom is a very slow decrease in muscle strength. Chronic pain is the second most prevalent symptom and is frequently the most difficult to treat. Chronic pain appears to be related to overuse of weak muscles along with abnormal joint and limb biomechanics.

Survivor and Activist

Among the thousands of Americans who survived polio in the 1950s but did not escape paralysis, is United Spinal Association Board Member Denise Mc Quade. While unknown to the general public, Mc Quade is a hero to the disability community for her tenacious activism for civil rights and an accessible environment. She contracted polio in November of 1951 when she was three years old and is currently seeing the beginnings of post-polio syndrome. Addressing one of United Spinal’s popular “Lunch & Learn” sessions on November 16, Mc Quade stressed the enormous differences in the public attitude toward disability in the 1950s and 1960s.

“The modern disability rights movement is very recent history,” she said. “It didn’t really begin until the 1970s.” Access, as we understand the word today, was nonexistent in the 1950s. No public transportation system accommodated wheelchairs and few if any public buildings were accessible.

“Public schools rejected you if you weren’t able to take care of yourself completely,” Mc Quade said. “And those who made it through school were rarely hired once they graduated. They sat home with their degrees. There was no government assistance of any sort, no financial assistance like Medicare or Medicaid, or any sort of disability insurance . . . My parents made it clear to me very early. The world wasn’t going to stop for me. I would have to make my way like everyone else.”

From a series of conferences at Long Island University in the 1970s Mc Quade became deeply committed to disability rights and became one of the co-founders of Disabled in Action (DIA). Thirty years later Mc Quade is still fighting. “I think we were influenced by the black civil rights movement and we adopted many of the same techniques,” she said. “The attitude about people with disabilities was a mindset. People just assumed we couldn’t do what everyone else does. We had to change that. We were second-class citizens. It’s not simply a matter of removing barriers, it’s a civil rights issue.”

At one protest against inaccessible buses in New York City Mc Quade blocked the doors of a bus and refused to budge, preventing anyone from getting on. The local television networks picked up the story and Mc Quade was on the evening news. United Spinal General Counsel Jim Weisman said, “Denise was the first one to put a face on the disability community. People started paying attention. We’d never had any real news coverage before. People sitting at home could see a real person and the real problems people with disabilities have. Everything started changing after that. The issue of accessible public transportation started to take off and Denise’s visibility made it happen.”

Demonstrations

DIA also demonstrated against the Jerry Lewis Telethon. Mc Quade described it as “notoriously paternalistic” and DIA believed it was reinforcing negative stereotypes about people with disabilities. “They perpetuate the idea that these kids are just pathetic little children,” she said. DIA’s demonstration, however, drew an angry reaction from some people because many refused to see the telethon and Jerry Lewis’s efforts as anything but benevolent.

One of the goals of DIA was to build a “crossdisability” organization—a group that could speak for all disabilities. DIA felt that it was counterproductive to have single issue foundations and nonprofits for this disability or that disability, each fighting for their particular rights when, in reality, the issues were the same for all groups.

“We had to get people to understand that disability is not a bad thing. It’s what nature decrees,” Mc Quade said. “I think that what has proven absolutely true is that when you make things accessible, everybody benefits.”

In addition to being on the Board of Directors at United Spinal, Mc Quade has been employed by New York City Transit since 1992, where she is currently a Public Information Coordinator in the Paratransit Division of the Department of Buses. She is the liaison to the Paratransit Advisory Committee and is a senior co-editor of On the Move, a newsletter on accessible mass transit and paratransit.

Rob Ingraham is senior editor.