In the 1950 film The Men, Marlon Brando in his first movie role plays Ken, a paraplegic World War II veteran struggling alongside other vets with spinal-cord injuries to learn to use wheelchairs, build their upper-body strength, and come to terms with what they assume will necessarily be diminished lives. Ken’s fiancée, Ellen, played by Teresa Wright, is sure they can put their old life together, but Ken breaks with her out of rage and self-hatred. In the final scene, chastened, he’s returned home to her. He pulls his wheelchair out of his car — folding wheelchairs were fairly new then — and pushes himself up the front walk, only to come to a stop against a step as an ominous chord plays on the sound track. We see a close-up of his stuck front wheels. Ellen comes to Ken and with gentle compassion asks whether he needs help. “Please,” he says, humbly. And she helps him get his chair over that step, and the next. The message is clear: with humility and love, disability can be dealt with, despite social, personal, and material obstacles.
What’s obvious to a viewer watching the film today is that if they just got rid of those steps, the house could be entered with no particular necessity for moral growth.
When I was young, in the 1950s, people using wheelchairs were almost never seen in public, in the streets, at events. Not seeing them didn’t seem odd to me. If I had questioned myself about it (I didn’t) I would have formed an image of a typical disabled person as largely housebound, naturally marginalized. But just about then, people with disabilities were ceasing to accept such isolation. To them the reason for their absence from the public scene was obvious: the built world was for the most part impossible for disabled people, in chairs or otherwise, to use.
Survivors of the era’s polio epidemics who spent formative periods at Franklin Roosevelt’s Warm Springs Institute for Rehabilitation, in Georgia, experienced what Reinette Donnelly, a resident of the institute, called a “stairless Eden.” “One of the things a person deprived of the customary use of his limbs comes to realize is how full of stairs the world is,” she wrote in 1932. To these polios — as they called themselves — Warm Springs made it clear that disabilities can disappear when barriers to social participation are removed and places, services, tools, and information are made accessible. The source of disability lay in large part, and sometimes entirely, not in the bodies of disabled people but in the world they lived in. It was the world that needed to adapt.
The last of the Warm Springs polios and the disabled vets of another war — Vietnam — were at the center of a movement for inclusion that would put forth a version of this claim: As persons with equal rights under the Constitution, they could not be arbitrarily kept from places and services that others freely used. The major gains of the movement for disability rights were won late in the era in which rights for women and African Americans were also won, and by the same means: political pressure, lawsuits, and direct action. As one activist said, “Black people don’t want to be made to sit in the back of the bus. We just want to be able to get on the bus.”
Section 504 of the Rehabilitation Act of 1973 prohibited discrimination against people with disabilities in any program of, or funded by, the federal government. When Joseph Califano, the secretary of the Department of Health, Education, and Welfare, wavered on implementing the act’s radically thoroughgoing provisions, a series of nationwide protests forced him to change his mind. Section 504 produced visible changes in our shared environment; the Americans with Disabilities Act of 1990 extended the rights guaranteed under 504 to the states and the private sector, among other accomplishments.
The most obvious barriers that faced mobility-impaired people are largely gone now, at least in urban parts of developed countries. After some initial resistance — “Why should I have to adapt my building for people in wheelchairs? They never come in here anyway” — accessible entries and curb cuts not only have become common but have also blended into their environments. The majority of those who use them are not people in chairs, for whom they’re necessary; they are parents with strollers, seniors uncertain of their footing, skateboarders: people for whom the modifications are convenient. Anyone under thirty could easily think they’ve always been there. The environment has been changed for the better, for all.
These largely unexpected consequences — universality and invisibility — became central to the theories of design that succeeded the original projects of “barrier-free” and “accessible” spaces. Universal design considers not just the specific needs of certain people but the general needs of everyone, in the built environment and everywhere. There should be a way, the thinking goes, for a street, a building, an Internet site, a TV show, a can opener, a phone, a gym, a newspaper, a bus or train, to be usable by all, without particular users having to be specially provided for.
I met with Valerie Fletcher in the café of a Barnes & Noble to talk about universal design. She’s the executive director of the Institute for Human Centered Design, in Boston, and has worked for decades in the fields of public policy and design. She’s well versed in unintended consequences. In her travels she’s seen accessibility ramps and lifts marked with the universal wheelchair icon go unused by the elderly, even though they might be glad for the assistance — it doesn’t seem right to them, or isn’t permitted. She once heard an older woman joke to a friend — as the two women made their way down the stairs clinging to the banister — “I wish I had a wheelchair.”
A useful device or facility can have different fates depending on how it’s characterized. Fletcher told me about Ron Mace, an architect and polio survivor who’s often credited with first deploying the term “universal design.” Mace liked to invoke electronic garage-door openers as an example: Suppose they had first been developed as assistive technology — that is, for use by people with disabilities who couldn’t manually lift a garage door. First of all, Mace suggested, they’d have cost $800 apiece. Second, no one would have used them but those with disabilities — the use of the device would have labeled a person as disabled. Instead, a tool developed for no one in particular is used by everybody. Fletcher asked me to remember the last time I’d lifted a suitcase and carried it by its handle: wheeled suitcases and curb cuts mean that people of different abilities can all benefit. Though the early adopters of self-driving cars might well be blind and visually impaired people, they will soon be followed by the rest of us.
But can all this really matter that much? How many people will benefit from this intensity of attention? The elimination of diseases like polio and the improvement of medical care would suggest that the number of people living with disabilities has gone way down in the past hundred years, but a comparison is elusive. Disabling conditions have changed names and definitions, and the disappearance of some disabilities has been partially balanced by a greater recognition of formerly hidden or unapparent conditions like PTSD and Asperger syndrome. A diagnosis can’t always be matched with specific outcomes. Should a person who was born deaf but receives a cochlear implant still be counted as deaf? Many deaf people don’t consider themselves impaired in the first place — they see themselves as members of a distinct culture.
A century ago, when the stigma of eyeglasses faded and the cost of lenses and frames went down, kids who couldn’t see well enough to read in school got glasses, and as a result fewer were labeled “feeble-minded.” And yet their place in the statistics has today been taken by students who can’t read because of dyslexia or ADHD, conditions that came to light because of better diagnosis and greater awareness. Time brings forth newly apparent disabilities even as it packs away older ones through public processes, like sanitation and vaccines, or advances in prosthetics and bionics, like the artificial lens in my left eye and the new valve in my heart.
In recent years, the thinking about the nature of disability has turned away from diagnosis and toward limitation of function: that is, a definition based not on the name of your condition, but on what you can or can’t do, for whatever reason. “Once that redefinition takes hold,” Fletcher said, “it becomes clear soon enough that functional limitation is not the condition of a minority. Simple demographics can show that. In developed countries people are living some thirty years longer than they did a century ago. And with that thirty-year bonus we’re all likely to experience some limitation of function in our life span. Which means, finally, that disability is not about a them: it’s about us. It’s a part of the human condition.”
Because of prenatal diagnosis and ultrasound, some children will have a better chance of surviving birth defects and growing up. For the same reasons, others won’t be born at all who once would have been. Those born even with multiple limitations can reach possibilities that were unthinkable in the past, so long as their parents can figure out the health-care and education systems, which are loaded with new opportunities as well as antique roadblocks.
Many of today’s limiting conditions are nonapparent: I must “identify as” a person with a particular limiting circumstance before it will be addressed. But what if I don’t want to self-identify? “Special programs are fine,” Fletcher said, “but we’ve paid scant attention to the idea of an integrated setting, where services are available without being asked for. The overall goal is that you should not need to raise your hand and say, ‘I am a person with a disability, you need to do this for me.’ Because people don’t raise their hands. Universal design anticipates the diversity of users without knowing their names.”
In 1929, the Daughters of the American Revolution donated a thousand acres of land about ten miles from my house to the Commonwealth of Massachusetts for a state forest. Today, in addition to all the other trails, there’s a fully accessible trail that starts at the boat launch by the lake and winds along the shore and through the woods. A variety of assistive devices, from hand-operated bikes to kayaks, are available in the summer, and a sighted guide leads blind visitors along the trails.
Tom McCarthy, director of the Universal Access Program of the Massachusetts Department of Conservation and Recreation (who was my near neighbor for many years, and still lives in our small town), oversaw the adaptations. “These are public lands, so everyone ought to be able to use them,” he told me. “Of course a lot of recreation requires physical strength, and you can’t design for everyone, but the opportunities here at the D.A.R. are integrated in every way we can make them. Not everybody can get their own kayak to the lake and into the water themselves, but getting out on the water is the fun part — so the goal is sharing the fun part with everybody, however that’s achieved.”
I asked Tom, who uses a power chair, if he was into camping and the outdoors when he was young. He said that he used braces and crutches then to get around — he was among the last polio cases before the Salk vaccine became universal in the United States — and he’d go into the woods with his friends. “I used to go with them as far as I could up the trails or on no trail. If I got stuck, well, they’d just carry me.” The D.A.R.’s staff today is, in a way, a public instantiation of the sort of help that Tom counted on from his friends long ago.
Tom was a model for my daughter as she grew up — an adult who used braces and crutches, and then a wheelchair, as she did. Over time my daughter, like a lot of people who use chairs, got used to calling up or researching the places she wanted to visit and the facilities she wanted to use in order to make sure that they were accessible. She told me recently that she no longer does that. She goes wherever she wants, to meet whomever she wants, and she assumes that things will somehow be okay. If a place isn’t accessible and usable, she and her friends and the restaurant or theater or gym will make it work.
“You likely could succeed with that most of the time,” Tom said to me when I told him this. “If you can’t get in one place there’ll be another next door. In the Valley, anyway.” He meant our part of the Connecticut River Valley, up in western Massachusetts, land of CSAs and college campuses and peace temples. But Tom’s work takes him to a lot of places in the state where you wouldn’t be so correct to assume access. Laws and regulations aren’t sufficient to do the whole job, even when they are accepted as just and acted on willingly.
To be truly universal, design would have to be as general and yet as variable as human needs are, as open to creativity as any problem, as improvisatory as the saddle of hands your friends make to carry you over a deadfall. I said to my wife that universal design seemed utopian. No, she said, it’s not utopian at all; it doesn’t depend on starting over, like Le Corbusier and the Bauhaus insisted. Most of the time it’s simple practicality. Many more buildings and spaces can be retrofitted fairly simply, so long as the will is there and the social compact comes down on the side of inclusion; you don’t have to make it all new.
She’s probably right. But utopia doesn’t have for me the negative color it has for many. It’s an ideal, and all ideals are more or less impractical, more or less far off. The most impractical and far-off tenet of utopia holds that all men are brothers — all people siblings — and yet that human groupings are innately and perhaps irreconcilably varied, and every person is unique.
People make claims to rights because they demand to be treated as no different from anybody else; they refuse to be regarded as other. They also demand rights, and accommodations, because of their differences — their unique bodies, heritages, psychologies, styles of cognition. They are not everybody else. I’ve noticed a certain degree of public bridling at such claims: How many particularized accommodations have to be built into the codes and regs? How many different kinds of bathrooms will be required for public spaces? Maybe one (gender-neutral, safe, accessible, child- and parent-friendly) will be enough, and the familiar icons — woman in skirt, man in pants, someone in a wheelchair — will vanish. One world, for everyone’s or for anyone’s use, universally designed.
Until that’s achieved, it is indeed utopian, even around here in Happy Valley, for people in wheelchairs or having any serious functional limitations or differences to presume that they can go wherever they want and do everything. My daughter has decided that — insofar as she can — she’ll live in the world as though it’s accessible everywhere, while knowing very well that, at least for the present, it isn’t.