People marching with United Cerebral Palsy prepare to participate in the inaugural Disability Pride Parade in New York in July. (AP Photo/Seth Wenig)
I was once a live-in aide to a woman with multiple sclerosis named Marin. She was a 54-year-old Jewish hippie with a purple streak through her curly cloud of hair. She dyed the right ear of Jake, her white-furred poodle, to match. This was a conversation piece. Some people shied away from talking to her when she motored through town on her electric scooter. But Jake, and their matching purple hair, invited strangers to smile and say hello.
I moved into Marin’s apartment in Brookline, Massachusetts, in Greater Boston. Six nights a week, I slept in between buzzes from the intercom, waking to move her crooked body between two different sleeping positions, and lifting her from her bed to her commode and back. Marin taught me about dead weight. She was a tiny woman, only just this side of five feet, and both legs and her left arm were withered and useless, emptied of their muscles. But when I picked her up — one hand in her left armpit, the other arm scooped low on her back, her chin bumping at my right shoulder, her stringy legs knocking at my knees like leather fringe, her stray purple curls sticking to my lips — I felt her solidity.
There was a particular way to do things. She’d get irritated when I didn’t lay her down right, and she always told me so. A narrow white pillow went between her calves to keep her legs from tilting in. I set her things beside her, one at a time — the intercom, the “up-down” (her remote for moving the therapeutic bed), the button to control the air, her “3:30” (a scented cushion named for how long it took to warm in the microwave; she liked it across her collarbone), a jar of her pills, her “black” (her eye-cover), her cellphone, and the blue tube of the CamelBak for her water. And then I put on the oxygen mask for her sleep apnea. She loathed it. It made her nose cold.
As I moved through the house and city with Marin, and again later as a personal helper to a young woman with cerebral palsy in Detroit, what was most revelatory to me was not just the idea that we will all eventually develop disabilities if we live long enough. It was that day to day, moment by moment, each of us moves in and out of disability. When we can’t see because we’ve lost our glasses; when our arms are incapacitated because they are full with groceries or a baby as we walk through the automatic doors at the supermarket; when we have a migraine headache and can’t bear the noise of traffic. In those times, we’ve tilted into disability. When I was on crutches with a broken foot one summer, I sure appreciated sloping sidewalks at intersections, and I cursed the curbs. In the Dyckman Street subway station in Manhattan, the elevator that was installed after a lawsuit by disability advocates turns out to be most often used by walking people with luggage, strollers and small children in tow.
But even now, 25 years after the passage of the Americans With Disabilities Act (ADA), enormous fear still casts a shadow on disabilities — a prejudice so deep that there has been relatively little acknowledgment this year of the profound triumph of the ADA on its silver anniversary, and, unlike other civil rights movements, its heroes are nameless in popular culture. This fear, and un-awareness, hinders the ability of cities to fully implement the ADA in practice and policy.
An NPR analysis of 17 cities around the country found that only 21 percent of subway stations were accessible. As the Department of Justice has detailed, local governments often mistakenly believe that older facilities and programs needn’t be modified because there is a “grandfather” clause in the ADA. Or they believe they are exempt from the ADA because of their small size. But, while there is some flexibility in implementation, there is no grandfather clause. Indeed, disability access in cities most often makes headlines not because of a clever new design or innovation, but because of lawsuits and legal settlements. Not incidentally, when accessibility is sidelined at the design stage and then incorporated in later, after public pressure, it tends to be much more expensive and to cost a great deal of goodwill. Those that attempt to provide services outside the public realm, like Uber and Lyft, are hardly immune from pushback.
Suing cities should not be the only way for people with disabilities to get the attention of local officials and planners. And again, this is not about “them” and “us” — it’s a universal need that is most urgent for some, but that hold us all in the same net. Smart accessible planning makes civic participation more available to everybody. The idea is that it is not the person who is disabled, but that cities and structures do the disabling by blocking, restricting or ignoring the engagement of a class of citizens. As the author of the commonly cited “Disability and the Urban Environment: A Perspective on Los Angeles” wrote in 1986: “In terms of ease or comfort, most cities have been designed not merely for the nondisabled, but for a physical ideal that few human beings can ever hope to approximate.”
While it is relatively small, there is a nascent movement of civic leaders that’s finding ways to open up cities. Chicago is doubling the number of its accessible taxicabs by 2018. New York’s Metropolitan Transportation Authority has committed hundreds of millions of dollars toward making its 121 stations wheelchair accessible by 2020. A free app in Honolulu can locate parking for people with disabilities across the state. Another new app tracks the accessibility of hundreds of restaurants, bars and other businesses in Louisiana, with an emphasis on New Orleans. Phoenix and other cities are approving a new accessibility symbol for use in updated signage — one that emphasizes activity rather than stasis.
In Miami, “Listen to This Building” is a first-of-its-kind architecture show that opened this month with a new way to “see” the built environment — the grand buildings and historic skyline that have such an influence on the personality of a city. Designed with people who are visually impaired in mind, but welcoming to all, the exhibit invites people to use their other senses to grasp the shape of building facades and deepen their sense of the spatial relationships in downtown architecture. Visitors can feel the shape of historic buildings on tactile relief works. There’s also a model where visual stimuli is eliminated: Guests put their hands into small openings to touch and feel architectural elements, like terra-cotta roof shingles. There are audio narratives, a tactile book of architecture, and free mobility tours, where those with sight wear blindfolds and use mobility canes to build a sensory relationship with city design outside of the visual.
And in Pittsburgh, a group with a background in both planning and technology is hosting “Accessibility Meetups” that hope to change the paradigm of ability and disability. They see the ADA as the floor — the bare minimum that communities can do. They are looking to envision the ceiling. That means accessible website design, especially on employment sites; educating public officials on the need for repaired sidewalks and curb cuts; and mapping accessible routes for pedestrians.
The idea to build from is that physical limitations are porous; in many cases, with the right design and adaptation, they are not limited at all. Planners and public officials should push back against the all-too-common notion that disability access is an obnoxious hurdle, if it is even thought of at all, in the urban geography. This only contributes to stigma and exclusion. The best way to counter that is to acknowledge how fluid disability actually is. People with disabilities are not a homogenous group — their needs and interests are various; their disabilities are visible and invisible; their resources and support systems are all over the place. And, if they pay attention, people who consider themselves to be able-bodied will notice numberless ordinary ways that their bodies become disabled, when they need some kind of physical assistance to navigate the world. Access is not an afterthought when we have a personal stake in the matter. We’re all on the spectrum.