Possibility unbound: 25 years of progress for those with disability

Thanks to the Americans with Disabilities act – which turns 25 next year – and a demanding and aging baby boom generation, the nation has fewer limits for those with physical impairments.

Cover Story

When New York City announced 30 years ago that it was spending more than $50 million for buses with wheelchair lifts, Ronnie Raymond rolled her eyes. The founder of a reinsurance brokerage firm, she commuted by bus “and I never saw anyone in a wheelchair, anywhere,” she says. “So why spend all that money?” 

The city had already invested in 1,362 accessible buses, and only 10 to 20 people citywide a day boarded in a wheelchair. 

“The reason I didn’t see anyone in wheelchairs,” Ms. Raymond later realized when she herself developed multiple sclerosis and had to use a wheelchair, “was because they couldn’t get anywhere.” Most could not even get to the bus stop. 

Today, curb cuts allow Raymond to negotiate most of Manhattan on her own. Although only 20 percent of the subway is accessible, she can board any of the city’s 5,700 buses, since each is equipped to accommodate two wheelchairs. “And it isn’t unusual for me to have to wait for a second, or even a third bus. But,” she adds, cocking her head impishly, “that never bothers me. It means people in wheelchairs are getting out and doing stuff.” 

This is increasingly true for the estimated 37 million to 57 million Americans who have a physical, emotional, or cognitive disability. Depending on the definitions of disability applied, that’s 12 to 20 percent of the US population. Globally, the United Nations estimates, 650 million people – 10 percent of the world population – live with a disability, making them the world’s largest minority.

There is no question that, to many with impairments, the modern world can still prove a daunting and sometimes downright inhospitable place. But nearly 25 years after President George H.W. Bush signed the Americans with Disabilities Act (ADA), an increasing number in the United States are living more empowered, less restricted lives. 

The telecommunications infrastructure and all those man-made spaces collectively referred to as “the built environment” – which includes cities, architecture, transportation, even parks – “are dramatically more accessible today than they were in 1990 when they passed the ADA,” says Andrew Imparato, executive director of the Association of University Centers on Disabilities and former president of the American Association of People with Disabilities. 

Services, too, have expanded, from transit systems offering riders with disabilities free familiarization and safety programs to specialized guides at museums to a growing number of designers developing clothing with a variety of specific needs in mind. 

The ADA – “our crowning achievement,” as Mr. Imparato calls it – set the country on a new course. Those who have come of age since 1990 have “grown up in more integrated settings and generally have higher expectations for what is possible for people with disabilities to achieve in work and in life than did the generations that came before them,” Imparato says.

Advances in technology have triggered a sea change. Mainstream innovations such as Siri double as assistive technologies, while robotics, bionics, and 3-D printers have revolutionized the design and manufacture of prostheses. And mobile phones and tablets have opened an entirely new field: apps. An ever-growing list of applications ranges from hearing aids to maps for people with low vision to communications methods for children diagnosed with autism. 

Looking forward, experts point to another major factor in advancing quality of life: the bubble of aging baby boomers. Among people under 65, an estimated 8.5 to 14 percent have a disability. In the over-65 population, some estimates are as high as 50 percent. 

Just as baby boomers have set trends in everything from spending habits to dating and child rearing, boomers with disabilities are not going to scurry off to the margins of society. They’re going to demand services and products.

Many believe this will benefit society at large. At the Indiana Institute on Disability and Community, Phil Stafford talks about progress “on the cultural front .... I think that those without disabilities have a kind of a taken-for-granted perspective on the world that we are shocked out of when we understand what daily barriers people might encounter.”

This might be an announcement some can’t hear, a website others can’t access, or doorknobs yet others can’t grasp. The light goes on, Mr. Stafford says, when people see “someone use their elbow to open a door that has a lever handle. People might say ‘I never thought of that.’ It’s not great world-shaking change, but it’s those minor encounters that make us aware.” 

But Sharon Joines, who teaches human-centered industrial design at the North Carolina State University College of Design, doubts most would react with such empathy, pointing rather to practical benefits: “When folks have a disability, they can become a burden. But if we remove barriers and provide them with the opportunity to be able to contribute with the skills that they have, then it’s better all the way around.” 

Society disabled, not people

Historically, people with disabilities were often kept at home or in institutions, under the presumption they couldn’t cope with the so-called normal world. Helen Keller upended that myth long before the ADA, and widespread shifts in attitudes began to crystallize in the 1970s. Following the model of the civil rights movement, activists lobbied and protested for the implementation of anti-discrimination provisions in the 1973 Rehabilitation Act to make the services of companies such as Greyhound accessible to people with disabilities. 

By the late 1980s, a new ethic began to gain currency. Rather than viewing individuals as faulty, the focus shifted to the barriers in society that kept the blind student from accessing information, the wheelchair user from going to the movies, the deaf analyst from participating in corporate meetings. In other words, society was broken and in need of fixing. The decade ended on a high, with the signing of the ADA. The law defined disability broadly, as any condition that substantially limits one or more major life activities.

“It was not a revolutionary law,” Imparato says. “It was an evolutionary law.” When dealing with an existing building, he explains, “you only need to make changes that are readily achievable and are not going to be crazy expensive.” Anything new, on the other hand, has to be designed from the start to be accessible. “So that concept, over time, produces a more accessible environment,” he says. 

The time it can take is illustrated by the experience of author and motivational speaker Rosemarie Rossetti. In 1995, when she and her husband built their home in Columbus, Ohio, they “purposefully built wider doors and a master suite on the first floor” in case one of their mothers someday moved in.

Three years later, Ms. Rossetti discovered how inadequate that was when a bicycle accident left her paralyzed from the waist down. She couldn’t negotiate the step to the front door. Once inside, the wheels of her chair sank into the padded carpeting. Faucets were out of reach. And she lost all privacy: She could roll into the bathroom, but the layout precluded her from closing the door. 

After trying “to shoehorn a floor plan that worked into the existing house,” Rossetti and her husband, Mark Leder, started afresh. They bought land and researched universal design, which offers such solutions as pocket doors that maximize usable space for wheelchair users and suit those with limited strength, precarious balance, and hand or shoulder problems; various intensities of halogen and LED lights activated by motion sensors; non-slippery outdoor pavers; and flexibility in design that allows users to add, say, transmitters that translate doorbells, a baby’s cry, the beep of a smoke alarm into flashing lights or vibrations in a pillow. 

They decided to create a home that would accommodate both the seated Rossetti and her 6-foot-4 husband and serve as a model for students, professionals, and the public at large. With the help of corporate sponsors, they built the Universal Design Living Laboratory, a 3,500-square-foot ranch house as green as it is accessible and attractive. A gently sloping entryway leads into a spacious home with hardwood floors and wide doorways, kitchen counters of various heights, roll-in showers with high and low shelves, and such features as sinks with nothing below them and oven doors that swing sideways so Rossetti can move in close. “I’ve gone from frustration to freedom, from dependence to independence, from pain to no pain, psychologically, physically, emotionally,” she says.

Ignorance of disabilities isn’t a cruel mind-set

One reason universal design has not caught on more widely is that baby boomers, the contemporary engine of change, tend to assume they will be spared any age-related decline.  

“They’re in denial,” says Michael Thomas of the Design Collective Group in Palm Springs, Calif. For years he has advocated an “aging in place” approach to building and remodeling, but now uses a neutral slogan: “Stay in Place.” This is exactly what 91 percent of Americans say they want to do, according to a recent survey by the Global Social Enterprise Initiative at Georgetown University in Washington, D.C., and the Philips company. While 96 percent say it is important to remain as independent as possible as they age, only 21 percent plan to retrofit their homes to help achieve this goal.

With boomers, Mr. Thomas invokes resale value, visits by older relatives and friends, or the possibility that a child, even a grandchild, might use crutches for a spell. Basically, he talks about “everything except them” when suggesting boomer clients align closets between floors so they might later add an elevator or install plywood behind bathroom walls to anchor future balance bars.  These things benefit older people as well as people with disabilities, and, deny it as they might, boomers will create a surge in demand.  

The same principles apply to cyberspace, where people shop, meet, and work. As with bricks and mortar construction, it’s cheaper and more efficient to make programs and websites accessible from the start. Not that absolutely everybody’s needs can be met, says Shawn Henry, a researcher at the Massachusetts Institute of Technology who focuses on Web accessibility for the World Wide Web Consortium known as W3C. “But,” she says, “you can make it flexible,” which is much easier to do on the Web than on earth. With a click of a button, users can access closed captioning; change font sizes or contrast; switch controls to a keyboard, puffer, or eye movement tracker; or activate a screen reader or Braille display.

“People accessing the Web on mobile devices have helped our case,” Ms. Henry adds. Sites that convey information solely through color, rely on audio prompts, or include long, complex sentences, for example, don’t work well on smart phones. These devices often have a limited range of color, and their size makes it difficult to wade through dense texts, stymieing users with and without disabilities. Plus, users often go online in noisy places. This helps explain why a 2003 Microsoft study found that the majority of working-age adults were likely to benefit from accessible technology. 

But it first has to become widely available. A 2012 study indicates that most public library websites still do not comply with the accessibility standards required of government-funded institutions. The situation is worse among commercial websites. Less than 5 percent of online shopping sites meet the needs of people with disabilities, estimates Brian Landrigan, head of sales and marketing for the Paciello Group, which specializes in software accessibility.  Most employers say they cannot find candidates with disabilities who have the right education and skills. But, says Mr. Landrigan, no company has asked him to ensure its online job applications are accessible. They simply don’t have any experience with a person with a disability, he says. “It’s not a cruel mind-set. It’s ignorance.”  

A need is a profit opportunity

Like many Americans who have a disability, Ronnie Raymond has horror stories: Being left stranded by taxi drivers because they’re unwilling or not equipped to deal with her wheelchair; going to a doctor’s appointment and finding herself stuck at the top of steps, relegated to a closet-like space for treatment, or treated as a nuisance when she couldn’t leave her wheelchair for a better perch for tests or screenings; having fellow shareholders in her cooperative apartment building refuse to build a ramp even after she offered to pay for it.

Even so, Raymond has seen tremendous change. When the courts sided with her in January 1999, the co-op added a ramp that blends with the architecture. After arriving at the doctor’s office recently to get a mammogram, Raymond followed the technician to a spacious room with a machine designed for standing or seated patients. The process, which five years ago lasted three hours and left her in tears, now takes less than an hour and includes no humiliations. And, thanks in part to Raymond’s own activism, the New York City Taxi & Limousine Commission announced in December 2013 that 50 percent of its medallion cabs will be wheelchair accessible by 2020. 

Change has come largely from litigation. “As important as the ADA has been,” says Stafford, at the Indiana institute, “it’s building for accessibility rather than building for everybody,” so the law extends its reach through individuals charging discrimination or the fear that this might happen. 

But not all improvements are mandated. The Red Lobster chain of restaurants, for example, did not introduce Braille and large-print menus in 2002 because it was legally required to. It isn’t. A staff member who was blind in one eye proposed the idea.

For others, Ms. Joines says, “Heck, that’s market share and [they] want the market share, right? In a very competitive environment, people are interested in creating something that can be used by and is attractive to more people.” 

The chief executive officer of Star Transportation Group in Pittsburgh had just such an idea. The city’s Yellow Cab company had no accessible vehicles so, in 2010, Robert DeLucia bought a fleet of MV-1s, the only US-made vehicle designed from the ground up to meet ADA requirements, and recruited drivers who are veterans or directly related to veterans. He converted the vehicles to run on compressed natural gas. Because powered wheelchairs can add 500 pounds to an already heavy vehicle, the decision proved ecologically and financially sound because it reduces fuel and consumption costs.

When former marine James Stanley pulls up to the Westin Hotel in a van with a red-and-blue VetTaxi logo, he slides out the ramp and, within a couple of minutes, has secured a passenger’s wheelchair up front with the driver. The demonstration is impressive and in sharp contrast to the experience of using retrofitted cabs in which the passenger rolls in through the rear, facing backward.

Describing her own experience riding in an MV-1, Raymond enthused, “I felt I didn’t have to apologize for who I am.“ 

A kid who wants to play ‘regular sports’

A month into his summer vacation this year, 13-year-old Chris Tavarez and his mom drove to Adelphi University in Garden City, N.Y., 20 minutes from their home on Long Island. He was embarking on his first sleepaway camp, and when they got there, it wasn’t clear his mother would actually let go of her boy. “You’re scared,” Maria Tavarez later confessed. “Will he get hurt?” 

On the second full day of camp, the only thing that pegged the skinny, wisecracking kid as a first-timer was a slight diffidence when he ran, and a valiant effort to mask embarrassment when he would hit the baseball tee. That, and his surprise at having to wear a blindfold: “Man, I can’t see anything,” he deadpanned. One of the coaches chuckled, and Chris, too, grinned. This is Camp Abilities, after all, a nationwide organization for kids with a range of visual impairments. Blindfolds level the playing field.

Chris, who can see only out of one eye and very dimly at that, cocked his bat and, all ears, focused on the ball’s electronic “beep-beep.” He slammed his bat into the batting tee. “I broke [it] again,” he said, head lowered. The next time, though, he thwacked the beeping ball, and his expression sharpened. “Did it go far?” 

Over four days, Chris swam, rode tandem bikes, wrestled, and played three team sports. In each, the coaches began by passing around a tactile map of the field or court, exploring the area with the athletes, and introducing them to the game’s auditory cues. For many Camp Abilities kids, this was the first time they played sports with peers. Half had either no physical education at all during school or, like Chris, took it apart from classmates. “It’s just me, my teacher, and my aide,” he says. 

“That’s such a disservice,” says Lauren Lieberman, who cofounded Camp Abilities, “because part of physical education is the camaraderie and the socialization and teamwork.” 

She also points to the fear of letting kids with disabilities take risks: “Sometimes the child is going to fall down. A lot of the kids I work with say, ‘I have the right to be in a situation where I am pushing myself like everybody else.’ ”

Opportunities to do this are increasing, says Peg Smith, chief executive officer of the American Camp Association: “In the last two decades, I’ve seen the number and scope of programs grow” as part of a more general trend toward inclusion. About half of ACA’s 3,000 member camps now accept and work with kids with special needs.

The belief underlying such programs is that everyone has the right to discover their strengths and find ways with which to engage in the community at large. In many respects, this is the foundation of what is referred to as “disability pride,” which, as Imparato explains, “is not unlike gay pride or being a feminist or proud of being an Italian-American or of being from Arkansas. It’s a part of who you are that you are not ashamed of.” It is empowering, he says, and the key to building a better future. 

On the last day of Camp Abilities, kids show off for their parents, herding them from the bikes to the wrestling mat to the baseball field with its beeping balls and bases. When they leave, they take with them new confidence and independence, friendships, and a sense of possibility in the form of a thick envelope that includes a progress report for their PE teachers along with a description of the sports they engaged in and any modifications used. These can be as simple as choosing a ball with a color that stands out against the gym floor, ordering equipment with a sound component, training a teacher’s aide to act as a guide, or tweaking the rules so the entire class can play a game.

“I want to have regular classes with the regular kids,” Chris says, “and play regular sports with them.” For the first time, he thinks this could actually happen. 

Empathy grows with awareness

A competitive diver, Manjushree Sen had no reason to think that, by the time she turned 50, she’d be tethered to an oxygen tank and require a continuous infusion of medications to keep breathing. For many years after her 1994 diagnosis of a lung disease, she says, “nobody would have guessed I was disabled.” She was just a woman who sometimes paused to catch her breath. 

In 2002 she was hired by SRA International Inc., a government contractor. As her condition worsened, her supervisor directed her to SRA’s Well Within unit, which handles health and accommodation issues, from providing temporary scooters or speech-recognition software to engaging teletyping services and sign language interpretation, says manager Kate Valette. When Ms. Sen’s condition precluded her from getting to the office, the company devised a telecommuting alternative. For the past four years, Sen has been confined to her condo, where she processes refugee requests from embassies around the world. A single mother of a now-20-year-old son, she says she feels “very fortunate to be earning a full salary and not going crazy while stuck at home.” Sen had a double-lung transplant last summer and will soon resume working, first at home, and eventually in the office.

Sen is in the minority. Less than a third of people with disabilities have a job, according to the Research and Training Center on Disability Statistics and Demographics. 

Research on employers by the Employment and Disability Institute at Cornell University in Ithaca, N.Y., places SRA among the 19 percent of companies that have a fund earmarked for accommodations. Cornell researchers also found that most companies did not include people with disabilities when thinking about building a diverse workforce. The words appear in nondiscrimination clauses, but only 19 percent have internships targeting people with disabilities. 

Disability advocates hope that legislation President Obama signed in July will help bring more young people with disabilities into the labor force. Employment, they argue, is key to raising 28 percent of working-age adults with disabilities out of poverty and tearing down remaining barriers. 

For Imparato, it’s a bellwether. An increase will signal that education, transportation, health care, technology – all the systems necessary for people to hold a job – are functioning. And as more people work together, attitudes will change. 

Landrigan already sees this happening when he meets with clients and walks them through their websites, pointing out who they are excluding and how. 

Their reaction? “I would say it’s empathy.”