Violinist Itzhak Perlman champions accessibility for people with disabilities

When renowned musician and conductor Itzhak Perlman checks in at an airport—something he does frequently with his busy international touring schedule—he often has the same frustrating experience. “I'll go up to the counter and they won't talk to me,” he says. “Instead, they'll talk to my assistant. ‘Where is he going? What's the weight of his scooter?’ I always have to say, loudly, ‘I'm right here.’ It's quite incredible.”

Perlman, who contracted polio when he was 4 years old, has walked with leg braces and canes for most of his life. Now 77, he primarily uses a motorized scooter to get around. Although he never sought the role of advocate for other people with disabilities, his fame has provided visibility, and his frequent travels have given him insight into the stigma and obstacles to accessibility people with disabilities face when they want to do something as simple as eat in a restaurant, go to a concert, stay in a hotel, or fly in an airplane.

“I haven't really taken on any formal advocacy positions recently, but I've done a lot of talking,” says Perlman, who performed at a state dinner for Queen Elizabeth II during George W. Bush's presidency and at the inauguration of President Barack Obama. He also has received 16 Grammy Awards, four Emmy Awards, the Presidential Medal of Freedom, and a Kennedy Center Honor. For decades, even before the Americans with Disabilities Act (ADA) was signed into law in 1990, Perlman would meet with architects and designers of performance venues to advise them on accessibility. “When they built the new David Geffen Hall at Lincoln Center in New York, I sat down with the architects, and we discussed all the things that would improve access to bathrooms, the box office, seats in the hall, and so forth,” he says.

In December 2022, Perlman returned to perform at Toronto's Roy Thomson Hall, which with its companion space Massey Hall is often called the “Carnegie Hall of Canada.” When Roy Thomson Hall was built in the early 1980s, Perlman consulted on the blueprints to ensure that it was accessible. “I hadn't been back since they renovated these spaces in the early 2000s, and I was delighted to see that they've changed the configuration of the hall and the seating to be even better than it was when I made my suggestions.”

Expectations at hotels

Concert halls may be increasingly accessible—some more so than others—but Perlman is less delighted with the approach that many hotels and restaurants take to accommodate people with disabilities. “When I go on tour, I find the hotel situation really quite horrible. I can count on the fingers of one hand the hotels I've visited that are truly accessible,” he says. “And the ADA sometimes is just used as a cover by architects who don't really understand what accessibility means. They put grab bars next to the toilet and in the shower and call it accessible. I've been in so-called accessible rooms where they have a bench in the shower for you to sit on, but the faucet is on the opposite wall. Who thought of that?”

He's also frustrated by the “luxury” touches in hotel rooms that end up making them less accessible. “In the fancy hotels, they have the beds very high and the toilets very low,” he says. “Between the high bed and the low toilet, forget about it. It's like climbing Mount Everest just to go to sleep. It's these little things that give you the feeling that people don't really care about what makes our lives easier.”

Perlman has learned to ask for photographs of the specific “ADA-compliant” rooms he will be staying in whenever he makes a hotel reservation. “I didn't used to do that, but now I do it all the time,” he says. “I don't want any surprises where I get into a room and can't reach something. And then there are certain restaurants that I don't go to because they have three steps to go down to the main floor or something like that. Shops also often have steps.”

Notable exceptions

Some places do accessibility well, he says. He cites a tactile paved pathway he saw in a shopping mall in Japan several years ago. “It's narrow, like a footpath, with raised dots so that your cane or even your feet can feel it and you can go straight. It's also yellow so that people with low vision can see it,” he says.

“London's black cabs all have ramps that fold out so a wheelchair user can roll right in, with passenger spaces big enough to fit the chair,” he adds as another example of good accessibility. “But that's rare. Whenever I go someplace and I have a free day, I want to get out and move, but it is very unusual to find ramp cars for rent like the one I have at home.”

Perlman's dream is to bring architects, interior designers, and decorators together with people who have a wide range of disabilities to discuss meaningful accommodations. “A summit like that would be fantastic, to discuss what it really means to have interior spaces that are truly accessible,” he says.

Embracing acceptance

Growing up in Tel Aviv, Israel, Perlman never really thought of himself as having a disability. “It was something I accepted without much bitterness, perhaps because it happened when I was so young,” he says. “When I went to school and they told me that gym was out of the question, it was not a big deal. I never thought, ‘Oh my goodness, I wish I could run like everybody else.’ In our neighborhood I had a lot of friends who played soccer, and I'd be the goalie and stop the ball from going through the goal because I had an extra set of legs—my braces. As a teenager, I played Ping-Pong and got pretty good at it. I'd hold my paddle with one hand and use the other hand to hold myself up.”

Although Perlman accepted his disability with equanimity, his parents tried to find some sort of remedy. “They didn't realize that my situation was not reversible, and they believed everything that came their way. A lot of people would visit the house with different ideas to make me walk,” he recalls. “One guy, who was very religious, brought in some parchment with a lot of holy words, and my parents would burn it and I would have to smell the smoke. And I went through all sorts of different diets. I remember having to eat a raw egg yolk every morning. Someone even told them that mercury would help, and I remember there was a green jar full of mercury, and every morning I had to take a drop. Sometimes when I act funny, I think that explains it,” he says jokingly.

Perlman's parents also took him to see Moshe Feldenkrais, an engineer and a physicist who had developed a form of alternative exercise therapy involving slow, gentle, repetitive guided movements that aim to improve mobility. (The Feldenkrais Method cannot restore function in paralyzed limbs, according to a study published in Evidence-Based Complementary and Alternative Medicine in 2011, although it may boost balance in older adults.) “[Feldenkrais] was talking to me about how the brain operates. I had no idea what he was talking about,” says Perlman.

“My parents would judge whether I was making progress by studying the big toe on one of my feet,” he says. “One time when I started to move it a little bit, they thought it was the greatest thing. I suppose they were devastated by what was going on with me, and I was not, really. It was just one of those things.”

Perlman always wanted to play the violin, but at first his age, not his disability, stood in his way. “It kind of went by the wayside for a while because people thought it was too early,” he says. “These days it's so different—you'll see 2-year-old kids playing the violin. But after I had polio, I still wanted to play, so my parents found a teacher.

“Did that help distract my mind from the things I couldn't do?” he wonders, reflecting on how the violin affected his attitude about his condition. “Possibly. My friends always thought I was a little weird, not because I couldn't walk properly but because I practiced violin two or three hours a day. If you want to do anything well, you have to make that commitment.”

Soon after moving to the United States in 1958, at the age of 13, Perlman performed on The Ed Sullivan Show. He made his Carnegie Hall debut in 1963 and then began to tour widely. “The only thing about having a disability while playing the violin is that I had to prove that my music was on a level that had nothing to do with my having had polio,” he says. “You could see it in the reviews. At the very beginning, they would always mention the fact that I was disabled and say things like ‘Despite the disability, it wasn't bad.’ Now they're used to me, so they don't mention it.”

Vaccine advocate

Perlman is deeply concerned by the antivaccination movement that has led to declining rates of immunization against polio and other vaccine-preventable diseases in some communities. In June 2022, an unvaccinated young man in a New York City suburb was diagnosed with paralytic polio after experiencing weakness in his lower legs. It was the second known case of the disease in the U.S. since 1979.

“We have a safe and effective vaccine that has been proven over years and years. It's a real shame for anyone to catch polio these days. When I think about it, I get livid,” Perlman says. “A lot of people died before we had the vaccine. When you have a serious case of polio, everything about your life changes.”

Some polio survivors experience postpolio syndrome—a new onset of weakness in muscles that were affected by the polio infection—years after the original illness (typically anywhere between 15 and 40 years). Perlman says he's fortunate to have avoided that outcome. “I can handle time changes, traveling, a hectic rehearsal and performance schedule, all without much difficulty,” he says.

Perlman has more than 15 performances throughout the U.S. scheduled for the first half of 2023. “The only thing that's changed recently is I need to practice more. I used to not really practice that much and just go play something. But now I say to my wife, ‘You know, practicing really helps,’ and she says, ‘I've been telling you that all your life. You need to practice!’”

Vaccines helped eradicate polio in the US

Polio is a highly contagious infectious disease caused by the poliomyelitis virus, which lives in the intestines and throat. A small proportion of people infected with polio experience serious symptoms, according to the U.S. Centers for Disease Control and Prevention (CDC). The polio virus can infect the brain and spinal cord, causing weakness or paralysis in the arms and/or legs. In some cases, the virus attacks neurons in the brainstem, at the back of the brain, impairing the ability to swallow and breathe.

Before the polio vaccine became available in the early 1950s, outbreaks were a regular occurrence in the United States, with some 35,000 people disabled by the disease every year on average in the 1940s, according to the CDC. In 1952 alone, 60,000 children were infected with the virus; more than 3,000 died, and thousands were paralyzed.

“Prior to the development of the vaccines, polio was frightening,” says Raymond P. Roos, MD, FAAN, an endowed professor in neurologic science at the University of Chicago. Children with paralyzed limbs would be fitted for braces, and those who had trouble breathing might be treated in iron-lung machines.

The first vaccine, an injection of the killed virus developed by Jonas Salk, was licensed in the U.S. in 1955, and by 1957 annual cases had dropped from 58,000 to 5,600, according to the World Health Organization (WHO). By 1961, there were only 161 cases of polio in the country. No naturally occurring cases have been reported in the U.S. since 1979, according to the CDC, although cases from other sources have arisen, and sporadic cases that originated in other countries have been identified over the years. But polio has not been eradicated worldwide and remains endemic in Afghanistan, Pakistan, and Nigeria.

An oral polio vaccine was developed by Albert Sabin in the late 1950s. It confers longer-lasting immunity than the Salk vaccine and requires fewer doses. In addition to being easier to administer and less expensive, the Sabin vaccine helps stop person-to-person transmission of polio as well as protects the vaccinated individual; the Salk vaccine does only the latter, according to the WHO. But because the Sabin vaccine is made using a live, weakened version of the virus, it carries a very small risk of causing paralytic polio. Salk's vaccine has been the only polio vaccine given in the U.S. since 2000, according to the CDC, but the oral vaccine is used in mass vaccination campaigns in many other countries.

Three months after a young man in the New York City area was diagnosed with polio in June 2022, the CDC announced that this case, along with poliovirus found in wastewater samples from communities near the person's home, was linked to circulating vaccine-derived poliovirus, which develops when not enough people are vaccinated against polio and the weakened strain of the virus from the oral vaccine spreads in under-immunized communities. Genetic sequencing suggested that the person had gotten polio through a chain of transmission that probably started with someone who had received the oral polio vaccine abroad.

Despite this case, it's unlikely that larger outbreaks of polio will return to the U.S., says Marinos Dalakas, MD, FAAN, division chief of neuromuscular medicine at Thomas Jefferson University in Philadelphia. It does, however, underscore the importance of getting everyone fully vaccinated against the virus. “If you have been vaccinated against polio, there's no reason to be concerned. But unvaccinated [people] could be at risk if there is community spread in an area where vaccination rates are low,” Dr. Dalakas says.

“There are some pockets of the United States where vaccination levels are low, and those areas may be at risk for transmission of infectious diseases,” agrees Dr. Roos. “It is extremely important that we follow all vaccine recommendations and stay current with them.”