I’ve come to understand that being nearly blind means my reliance on others is permanent. But I have not completely accepted this.
One cold November morning, I was on Seventh Avenue and 50th Street in Manhattan, on my way to a Dunkin’ Donuts. For most people, such an excursion is not a particularly exciting part of the day. But when you are almost blind, as I am, the expedition has a certain complexity.
I knew the shop was somewhere just past the northeast corner on 50th, but when I got there, I could not identify the correct storefront. The cane I walk with can prevent me from slamming into a wall or tumbling down a staircase, but it can’t distinguish a donut shop from an Indian restaurant or a dry cleaner. I wandered back and forth, hoping a whiff of chocolate would guide me to the right doorway. No luck. I was stranded on the street, unable to find my way but also unwilling to return to my hotel sans latte.
Obviously, I had to seek help. But doing so has always made me feel uncomfortable, embarrassed, and vulnerable—potential quarry of the unscrupulous and uncaring. I made one rather meek and unsuccessful attempt to get someone’s attention.
The kindness of a stranger eventually rescued me from my predicament and my recalcitrance.
Read: The competitive world of blind sports
“Are you lost?” a woman (probably elderly, based on her voice) asked. I told her what I was looking for. “It’s over here,” she responded.
I followed her, and she opened the Dunkin’ Donuts door for me. Turns out I had passed it by about 20 feet. I thanked her profusely, then returned to my hotel, latte in hand.
New Yorkers are especially adept at aiding the disabled. On two occasions, people insisted on helping me hail a taxi, then waited to make sure I got into the back seat. A young woman approached me at a crosswalk to politely inform me I could safely cross the street. A doorman voluntarily escorted me down 55th Street to a restaurant.
Relying on the generosity of random strangers is not how I want to live my life. No one likes to be a burden on others. Yet the harsh reality is that I am. Those around me, most of all my family and friends but also anyone I happen to encounter over the course of a day—waiters, store clerks, taxi drivers, assorted pedestrians—are obliged to assist me, whether I (or they) like it or not. There’s no other way for me to get through life.
This unsettling feeling of dependency is new for me. I started referring to myself as “disabled” just a few months ago. My condition—a genetic retinal disorder called retinitis pigmentosa—causes my eyesight to deteriorate over time, so although I have never been fully sighted, I had long been able to go about life with a fair degree of independence.
Beginning in my teens, my goal was to be “normal,” or at least to appear “normal.” I tried to do whatever everyone else was doing. That included learning to drive. I took the wheel of my mom’s Volvo on my own only a couple of times before turning in my keys for good, but I’d made my point: Getting a driver’s license was a rite of passage for any New Jersey teenager, and I refused to be different.
No one could tell me otherwise. The doctor who diagnosed me in my teens recommended that I choose a career that would not require good vision. The next, a well-regarded retinal specialist in New York, prattled off a list of activities I should not do, which included playing sports and riding a bicycle. He advised that I carry a flashlight in the dark—an early symptom of my condition is night blindness—which I quickly discovered was of absolutely no help. No one, not even supposed experts, truly understood what it was like to live with my problem. I kept riding my bike.
To the greatest extent possible, I tried to conceal my condition—not because I was embarrassed but because I didn’t consider it anyone’s business. Asking for special accommodations was simply out of the question. That could invite discrimination. Best not to talk too much.
In the mid-2000s, I was a correspondent for Time magazine based in Hong Kong. A top editor asked me during a visit to the New York headquarters whether I wanted to join the Baghdad bureau. Of course I did, but my blindness has always placed some constraints on my activities. At the time, Iraq was in the throes of chaos. No military organization would have sent me there, so I wasn’t about to go with a media organization. The editor either didn’t know I was almost blind or wasn’t bothered by it. I didn’t intend to blurt it out. I reminded him that I was the economics correspondent.
“You’re a pro—we’ll train you up,” he said.
“The bloodiest thing I ever covered was a stock-market crash,” I told him.
The concern that prompted my reticence was not unfounded. Disabled people often face discrimination that goes unrecognized. The unemployment rate among the disabled in the United States was more than 7 percent in 2023, twice as high as for the workforce overall.
“We still have a long way to go” to address discrimination against the disabled, Sara Minkara, the special adviser on international disability rights at the U.S. State Department, told me. “Disability is not yet normalized in our society.”
The problem is that “accessibility is seen as an add-on, as a burden,” she continued. “When you embrace and integrate and include persons with disability, it will benefit society at large. We have value to contribute.”
From the March 2023 issue: Society tells me to celebrate my disability. What if I don’t want to?
I’ve been fortunate that my employers have realized this and for the most part treated me no differently from anyone else. My career has taken me across the globe, from Madrid to Moscow to Mumbai, entirely on my own. I got trapped in the middle of a military mutiny in Manila, fought off thieves in Geneva, and dodged my government minder in Pyongyang.
Now I can’t find a Dunkin’ Donuts in Midtown Manhattan. The transition has not been easy. I began walking with a cane about four years ago, and not only is it a pain in the ass; it is an advertisement that I’m handicapped. No more hiding.
Some abled people who can see, hear, and walk treat me as if I’m broken, and thus incapable. They meet disabled people who show that we can actually do things with bewildered wonder, as though we’re miracles of humanity. At immigration in Beijing’s airport a few weeks ago, an officer started asking questions about The Atlantic—addressing my wife, not me, because I apparently also can’t hear or speak.
“What's wrong with him?” he asked.
“He’s visually impaired,” she answered.
“And he works?” came the response.
A member of the security staff at the airport in Singapore very politely insisted that I sit while he examined me; because I can’t see, he seemed to assume, I also can’t stand.
At other times I’m treated as more object than human. I was waiting for an elevator in my apartment building’s lobby the other day when a man standing beside me, apparently assuming that I would not be able to see one arrive, grabbed my jacket at the shoulder as though to drag me inside like a piece of luggage. Try that on a sighted person and you’d probably get punched or arrested. Walking near my apartment recently, I came upon several mothers with baby carriages arranged haphazardly in front of me. Though I had my white cane, none deemed it necessary to move out of my way, and as I attempted to navigate among them, one mom, thinking I might slam into her carriage, reached out and shoved me backwards.
“The discourse and conversation around disabilities historically has been shaped by people without disabilities, and that is a huge problem,” Bonnielin Swenor, the director of the Disability Health Research Center at Johns Hopkins University, told me.
“We have created a societal view that it is an evil, awful thing,” Swenor (who also happens to be visually impaired) continued. “For many, that view is a by-product of what we have learned, what society has taught us, and that we are living in a world that is not built for us.”
It certainly isn’t. Revolving doors at office towers might as well be called “blind-person milling machines.” Try finding the bottle of vitamins you want on a CVS shelf or minding the gap on the S train at Times Square without plunging to the tracks. Beijing, where I currently reside, is a death trap for the disabled. Every time I cross a chaotic street, I fear I’ll end up like the often-unfortunate amphibian in the old video game Frogger. I’ve thought of writing a James Bond movie script in which the bad guy is blind and intent on destroying the world in order to rebuild it to suit the disabled.
Short of that, I’ve been forced to foist certain responsibilities onto others, most of all my wife, who is stuck with me more than anyone else. She has to fill out paper forms for me and locate the right pair of pants at a Uniqlo. Sometimes when I’m home alone, I drop something and can’t find it. “Somewhere on the kitchen floor is a grape,” I tell her upon her return.
I have little choice, but the feelings of guilt persist, making me reluctant to seek help. Flying on my own has become a trial. I dare you to find your suitcase on a baggage-claim carousel blindfolded. But I can’t bring myself to request assistance from the airline. I still assume I’ll figure it out along the way. My wife, worried I won’t, contacts airlines for me.
She’s right. I’ve been thinking about this the wrong way, insisting on a faulty mental construct—the myth, that is, that we should all be independent. None of us is, really. We rely on one another all day long, in all kinds of ways—parents taking turns driving their kids to soccer practice, a daughter escorting her elderly mother to the doctor, office workers contributing to a team project. So I need help finding a Dunkin’ Donuts. What’s the big deal?
Swenor and other advocates call for reform in how the abled think and talk about the disabled, and in how we think about ourselves. “This is all about creating a society that includes disabled people, and changing that perspective from ‘lesser’ and ‘can’t,’” she told me. As part of an advisory committee, Swenor advocated for the National Institutes of Health to remove the language about reducing disability from its mission statement, a proposal that has won a fair amount of support. “Up until now, the investment and the conversation has almost myopically been on curing and eliminating” disabilities, Swenor said. But disability isn’t going to disappear, so more emphasis should be placed “on creating structures and systems and a more equitable society.”
This resonates with me. At the moment, there is no treatment or cure for my condition. I can’t change to adapt to the world; the world will have to adapt to me.
Of course, I realize that won’t happen, or at least not to a degree that would make me substantially more independent. However much we spend to make cities more accessible, or whatever technology we try to introduce, I will still routinely encounter hazards and problems that I cannot resolve on my own. My reliance on others is permanent.
Still, much can be done. Tweaking language is a start, but barely one, and not always helpful anyway. I’ve recently noted public toilets labeled for the “differently abled” rather than the “disabled.” That’s adorable and well intentioned. But it’s also wrong. I’m not able to do things “differently” from others; I lack capabilities, and this makes me unable to perform certain tasks. I have to worry about accidentally peeing on my shoe; most people don’t. More helpful than switching the signage would be to brighten the lights in these typically dimly lit spaces and stop hiding the soap behind stylish mirrors. Better still, let’s not use disabled toilets as storage closets or illicit smoking dens. At an airport lounge in Hong Kong recently, the staff kept the disabled restroom locked, apparently so they wouldn’t have to clean it.
From the September 2023 issue: The ones we sent away
The campaign against discrimination can also go too far. One of the world’s most popular YouTube stars, known as MrBeast, has come under fire for engaging in what’s called “inspiration porn.” He spends significant sums on hearing aids, cataract surgeries, and other medical assistance for the needy, then posts videos of the result. Critics accuse him of exploiting the disabled and misrepresenting their true struggles.
The genuinely charitable don’t need to advertise their virtuous deeds on YouTube. But who cares? Providing hearing aids to the impaired and impoverished can change their life by allowing them to work more easily and gain greater independence.
Discouraging those who want to help serves no one. Our lives are spent bumping into one another (in my case, too often literally). A few of those interactions, with family and close friends, can be complex and durable; some last a lifetime. The majority are temporary, even fleeting. Some of these can be of great consequence—the emergency-room doctor who treats your broken leg, for instance. Most are of lesser significance—the friendly woman who served your eggs and toast this morning, the person who held a door open, the Uber driver who lifted your suitcase into his trunk. In each of these innumerable daily encounters, we assist one another, sometimes so automatically that we don’t recognize our actions as indicators of our perpetual interdependence. In that light, my life is pretty normal after all.
Or so I tell myself. I have come to understand that the disabled will always rely on the goodwill and generosity of others. But I have not completely accepted this. The craving for lost independence, the fear of dependency, will persist, and perhaps even intensify as I descend further toward blindness. That feeling, too, seems an inevitable part of life. So if you see a middle-aged guy with a white cane aimlessly wandering on 50th Street, lend a hand. He’ll appreciate it.
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