I just had an essay published in Brandeis Magazine. It is a reflection on getting a Ph.D. while going blind, and on the personal and systemic factors that promote or impede success for disabled people. You can read it here.
Today is White Cane Awareness Day, a day to celebrate a tool that, despite its simplicity, remains one of the most powerful for independent living and travel among the blind.
I got my first cane in 2015. It came with my Orientation and Mobility training, provided free-of-charge by the Commonwealth of Massachusetts when I registered as legally blind. I will always be grateful that I went blind in Massachusetts, because the state-run Commission for the Blind provides excellent services and training for blind residents who want to keep working or re-enter the workforce. They gave me assistive technology and Braille instruction before I even needed them, so that I would be prepared when I did.
Also there, and also before I needed it, I received training in proper cane technique—when I’m in motion the cane is in motion, skimming the ground or tapping in front of my hind foot. I learned how to make sure an area was clear before I stepped up or down a curb, and how to navigate staircases, using my cane to sense the beginning and the end. I learned how to read the traffic patterns so I could gauge when it was safe to cross, and how to aim so I would end up on the sidewalk instead of the middle of the intersection.
I walked for miles through the chilly autumn air, wearing a blackout blindfold. My instructor followed a few steps behind, sometimes offering correction or advice, but mostly letting me find my own way using my cane, my ears, and my memory as guides.
It was challenging, sometimes frustrating, but I’m glad I got that training when I did.
In 2016 we moved to California, and the cane didn’t leave my bag for a year. It’s not only that I avoided using it. I knew our neighborhood and felt safe enough walking most places without it.
But throughout that year I had the growing realization that I should probably start using it more often, especially at night and in crowded places. Yet that thought also filled me with that potent mixture of pride and fear familiar to many of us who are losing our sight. It is one thing to learn how to use a white cane; it’s quite another to need to use it.
In 2017, I wrote a long reflection on the emotional struggle, the pride and fear that keep us from carrying canes and the reality of prejudice and discrimination that justify that fear. It is hard to so openly wield this signal of blindness, especially since most of us have tried for years to hide our fading sight from others.
But pragmatism has won out, as it usually does. Over the last year, my cane use has gradually increased. I carry it most of the time now, outside the house and a few short routes nearby. I wouldn’t imagine going somewhere new and unfamiliar without it.
In many ways, it’s surprisingly comfortable. I’m sure people stare, as Kristin pointed out last year, but I don’t notice that. Mostly I notice the stress that it removes from my walk, since I don’t have to stay on high alert for trees and people that materialize in front of me, or obstacles that leap from nowhere into the path of my shins.
My three-year-old daughter takes it in stride. Sometimes she tries to take it in hand, too, but I think we’ve mostly broken her of that habit. She knows it’s “daddy’s stick” and asks for one of her own. I might buy her one.
There are a few funny things. If I’m walking with friends and take my cane out, they often start giving me tips and information about the environment.
“There’s a curb coming up.”
“Trash can on your right!”
It’s ironic, because I took the cane out to get exactly the sort of information they are now providing. It’s like the cane primes them, reminds them that I’m blind, and prompts them to offer advice, just when I stop needing it.
Every year, I’m sure the cane will become more comfortable, more indispensable, a more natural extension of my arm and my sensory field. My white cane is part of my life now, necessary for the basic functions of life. When I think of it these days, I don’t fear the message it broadcasts to the world; I simply appreciate its utility and the freedom it brings.
I know that the cane is still a marker of my blind identity, and that that identity will certainly create difficulties for me in this life, but that’s not the cane’s fault. It’s just doing its job.
Happy White Cane Day, everyone!
That special time of year has once again come and past, when 10,000 scholars of Bible and religion gather for a long weekend of research presentations, nerdy conversations, and drinks with friends and colleagues who are scattered across the globe.
This year, the annual meeting of the American Academy of Religion and the Society of Biblical Literature met in Boston. Since it was just a stone’s throw from my former home in Waltham and Brandeis University, where I’m getting my Ph.D., I came in a few days early. It gave me a chance to stay with excellent friends, mete with my dissertation advisors, practice yoga with my first teacher, and eat pancakes at the best breakfast spot in town. Then I found my way into downtown Boston for four very enjoyable days of conference.
Between Waltham and Boston, it was a great opportunity to test and assess my orientation and mobility skills.
You see, in addition to its value as a professional conference, SBL gives me a regular chance to reflect on how my declining sight affects my ability to navigate unfamiliar locations and situations (see last year’s entry here). Most of the year, my life is pretty routine. I take familiar streets and familiar trains to familiar places—not a great challenge. And on most other big trips, I’m accompanied by my family. SBL turns that all on its head, as I find my way solo through busy airports, navigate public transit systems, and search for rooms in cavernous and labyrinthine conference centers.
Last year, the big transition was using my cane throughout the conference, even though I only felt I needed it for safety at night. This year, I can’t imagine having gone without it. Boston is a city of confusing streets, more confusing subway stations, and entirely oblivious speed-walkers—the only downside to my cane was how often sighted people tripped over it.
Overall, though, I’d say this year was a navigational success. I got everywhere I needed to go—perhaps with an extra wrong turn or two, or three, or…
But my point is, I got where I needed to go.
The biggest new challenge this year was balancing my desire for independence with getting help when necessary. Most of the time, I like to figure things out on my own. And most of the time, this is a good thing. I find that bumbling through a confusing route helps me internalize it better than if I’m guided through, and that makes navigating it the next time much easier. Sometimes, however, the time I’d spend finding my own way is just not worth it, and it makes more sense to ask the nearest person where I am and which way to go.
But asking for help is like that proverbial box of chocolates. Or maybe more like a box that’s part chocolates and part over-bearing strangers who just grab right on to you and start dragging you off in god-knows-what direction. And part older European gentlemen who are very concerned that you are going to be all right.
The point being, you never really know what you’re going to get. Sometimes asking for directions brings you into contact with truly delightful people you never would have met otherwise. Other times, it turns into a very unpleasant experience that tests your patience and civility.
One time, as I stood looking confused at a fork in the road, a man came up and asked if I was headed to the conference center (how did he know? I was wearing the scholar uniform of khakis and a corduroy jacket, of course). I said yes, and he asked if I’d like to walk along with him. We spent the next few minutes discussing his upcoming commentary on the Book of Leviticus and my dissertation on psalms, until we reached the center and split off to our respective events. Perfectly pleasant.
Another time, I was trying to find a group of friends in a crowded Italian market/restaurant. I asked an employee where “Il Pesce” was, and without a word he grabbed me by the shoulder, pulled me across the market, and let me loose with just as little ceremony—in front of “La Pasta.” Luckily one of my friends came to fetch me, or I may never have found them.
Another time, an elderly man asked if I needed some direction. When I asked him to point me in the direction of the exhibition hall, he grabbed my arm (much more gently than the last guy, but still) and guided me all the way to the hall, even though I kept telling him I was ok on my own from here (and here, and here). I just couldn’t shake the guy!
I know this might make a lot of you nervous. A lot of people feel uncertain about how best to help visually impaired people and people with other disabilities. “Will they think I’m overbearing, rude, or awkward? Will they hate me for trying to help?” This is understandable—it’s a complicated issue that I hope to dissect more in future posts. But based on my experience so far, I have thought up a few tips that I think will serve you well in deciding how and when to help:
- Don’t be afraid to ask a blind person if they know where they’re going. I know a lot of good-hearted people who don’t offer help because of the fears mentioned above. I’ll just give you permission: it’s ok to ask a simple question like “Are you all good?” or “Do you need some directions?”
- BUT, believe the person if they say no, and believe them if they tell you they only need one piece of information, and don’t feel bad walking away once you’ve told them what they asked for.
- In general—and this is good advice in all of life—don’t just grab people. Exceptions are allowed for imminent danger: falling pianos, quicksand, etc. Otherwise, ask before touching.
- Better yet, ask if the blind person would like to take your arm. This is best practice for what is called sighted guide, but understand that not all blind people like to take an arm, or at least not all the time. Many of us prefer to walk beside you or a half-step behind, and walk independently with our canes.
Basically, let people tell you how to help them. Listen and trust that they know how to live and function in their own bodies.
On my end, I’m realizing I need to develop my ability to clearly and effectively communicate my needs to those who wish to help. This can be frustrating and difficult in the moment, but the more I think through my experiences and talk with people, the better I get.
Any other questions about how to interact with blind folks? Any other tips from blind travelers? Let me know in the comments!
I rarely watch what I’m doing when I pour coffee these days. Same goes for filling a glass of water, or a cup of milk for my daughter. And surprisingly, it doesn’t end in disaster very often. Why not? Because I’m listening.
As I fill the container with liquid, the sound it makes gets higher and higher. At some point, I get the feeling it’s high enough, and I stop. Most of the time, the liquid is just about 3/4–1” from the top of the container. I’m surprised at how consistent it is, and how seldom I get coffee on my hands or on the floor.
So here’s my question: what am I using to gauge this process? I can’t just be listening for a specific pitch, since a coffee cup and a water bottle resonate at very different frequencies. There must be a metric that holds steady across containers of all shapes, sizes, and materials, and across methods and rates of filling.
Help me out, physicists! What is it? Rate of change? Difference in rate of change? Some ratio between beginning and ending frequency? I must know!
“I need to get used to people staring,” said my wife, Kristin, as we walked up a busy sidewalk one evening, passing small clusters of shoppers and bar-hoppers.
“Oh, are they staring?” On some level, I know people do—I’ve thought about it a lot, in fact—but I don’t usually notice when it’s happening.
We walked on for a moment, passing a few more chattering groups. “It’s pretty rude, actually.” A little more edge in her voice this time—a hint of anger and offense on my behalf.
It wasn’t the first time I’d had my white cane out while we were walking together, but it hadn’t yet become normal and run-of-the-mill. It still hasn’t, really. I don’t need the cane in my own house, or my own neighborhood where I’m comfortable, but in unfamiliar surroundings, or at night, or in crowds, I can no longer get along without it.
So I have started using the cane. I resisted it for a long time—I carried it with me for a year before I took it out in public. When I use it, the benefits are real. I am calmer. I don’t feel the constant fear that I might trip over a curb or run into a bench or a sign or an unsuspecting pedestrian. I hadn’t realized how tense I could get walking until my cane let me relax.
Why did I resist for so long? It wasn’t the stares, per se, because I don’t notice the stares. I do notice other things. I notice people get out of my way. I hear children comment, or maybe just their parent saying “because he can’t see, honey—keep walking,” in a loud, embarrassed whisper. Sometimes, people are nicer to me. When I run into people, they apologize to me. People offer directions and guidance when I’m walking. Panhandlers don’t see me as a mark, so they say hello and have a nice day and we each go on our way.
These are minor things, perhaps. On their own they would be annoying, tiresome, occasionally disheartening, but they are not on their own. They are just a few symptoms of a deeper and harder truth. When I carry my white cane, people see me differently. That thin metal stick blocks everything else from view and becomes the controlling factor in my first impression.
Suddenly, I am not just a man.
I am a blind man.
And that, my friends, is a hard move to make. I spent most of my life actively trying to avoid being labeled for my vision, and for the most part I succeeded. My eyesight has always been poor, but it hasn’t defined me. People have gotten to know me first, and my visual impairment after. In a few cases, I knew someone for years before they learned I had low vision. It’s not that I tried to protect the secret that fiercely. I never outright denied it, but if a situation never arose where I had to admit it, I didn’t feel obliged to. It cannot be hard to imagine why I would rankle at the thought that my visual impairment, that thing I had sought to hide for so many years, would now become the first thing any new acquaintance would learn about me.
Looking back, it’s easy to interpret my reticence as vanity and empty pride. It’s easy to say I was foolish to avoid a useful and necessary tool just to maintain appearances.
But I’m not alone. Many people with progressive vision loss wait way too long to start using their canes. My first Braille teacher would lament the stubbornness of her students at length: they wait too long to give up driving, they wait too long to learn Braille, they wait too long to start using their canes.
She once told me of a man who insisted he did not need a cane full-time. He was perfectly safe walking without it. After all, he had only been hit by two cars.
So before you chalk my resistance to the cane up to ego or foolish pride, consider how many others also resist. Consider how strongly they resist. And consider the factors that lead them to resist. They are not illegitimate.
Seventy percent of blind people are unemployed. The reasons for this—the historical degradation of the blind, the problems of education and accessibility, and so on—could fill volumes, but none of them is absolute. None is immutable. With some adaptation and accommodation, most blind people are fully capable of earning their pay the same way any other person does.
This unemployment rate is not the necessary result of blindness; it is driven in large part by social perception of the blind. A recent study from Johns Hopkins University showed that Americans fear blindness more than any other malady: more than losing their other senses, their limbs, even their memories and their minds. Sighted people fear blindness, and they project that fear onto the blind. The victims of their greatest fear become the objects of their greatest pity.
And pity is not an emotion that expects great things. Pity patronizes. Pity belittles. Pity excuses. It does not inspire faith, or trust, or get you a job.
Dr. Sheri Wells-Jensen, a professor at Bowling Green State University who is blind, created a short video illustrating the difficulties that blind people have in job interviews. The interviewers are not antagonistic, but their view of blindness has been conditioned by naive assumptions about the difficulty of being blind and their participation in a blindfolded simulation. Throughout the interview, they ask the blind interviewee simplistic and demeaning questions that betray their rock-bottom expectations for her performance.
“Did you type this? Oh my gosh, how? I don’t see a single typo or anything!!”
“When you teach, how do you know where the students are?”
“I’m happy to walk you to your car. Do you need help getting down the stairs?”
They dismiss her legitimate achievements—an earned Ph.D., independent research, and ten years of teaching experience—and focus instead on her “impressive” ability to perform the simplest tasks. By the end, it is clear she was not interviewed as a candidate, but as a novelty.
In an online discussion of the video, a blind graduate student asked if this was really the experience she could look forward to when she entered the job market. Dr. Wells-Jensen replied that interviewing wasn’t quite this bad—she had heard all of these things in one interview or another, but she had never heard them all in the same interview. Small consolation, for those of us with our careers ahead, but it is the reality we must face.
Jobs and opportunities are not earned. They are not simply conferred based on met requirements of ability and achievement. Jobs are given. They are given by people, based on those people’s perceptions of the candidates.
Like it or not, the perceptions of others have a profound impact on our lives, and all of us—whether we acknowledge it or not—go to great lengths to manage and influence those perceptions.
I lived the first thirty-four years of my life with the ability to control how others perceived me. There was no part of my appearance or manner that instantly and inevitably lowered my estimation in the eyes of those I met. When I picked up the white cane, I took up the mantle of blindness, and the prejudice that comes with it. I could put that mantle down again, just by putting away the white cane. It was a symbol, the sign of my blindness, and while I could hide it, I did.
Increasingly, signs of blindness are always with me, in my body and my behavior. I’ve failed to recognize too many faces, missed too many offered handshakes, run into too many obstacles to think I can hide it now. The social benefits of keeping my cane zipped up in my bag have faded as the practical benefits of using it have grown. I am blind whether I carry it or not, and now I am seen as blind.
The main lesson here is not about white canes. I’m not just telling people to stop worrying and learn to love the cane. Everyone who loses their sight has to weigh the benefits of the cane against its costs, and decide for themselves when to use it (or when to get a guide dog!).
No, the lesson I’ve learned is about my fear. It was not baseless, and the thing I was afraid of is real, even if I couldn’t articulate it in the beginning. Social perception has deep and long-lasting repercussions in the real lives of blind people and it drives many of us who are going blind to resist tools that could help us in practical ways. Being hit by a car is a problem; so is unemployment.
But this is hard to see from the outside, and harder to truly appreciate. Even my Braille teacher, who worked closely with the blind and the going-blind, could not see the reasons why her students didn’t use their canes as early as they should have.
In this way, it is also a reminder to trust stories of prejudice and discrimination from others. My own white cane is an object I can pick up and put down, but many people are born with “white canes” in their bodies, characteristics they cannot hide that set them apart and mark them out from the rest of the population: sex, skin color, disability, and deformity. Others have “white canes” like sexuality or religion, things they could hide with effort, but at a deep cost to their identity or well-being. All of these create barriers based on social perceptions, not any real deficit.
The problem of prejudice can be attacked from two directions. The one I tried for most of my life focused on me—managing my appearance to avoid showing any disability or defect. That way is now closed to me, as it is and has always been closed to so many others who face prejudice and discrimination every day of their lives.
The other approach is to change the perceptions themselves, to move past the fear of being labeled and judged, and do what small part I can to show the world that naive, patronizing condescension of blind people is unwarranted and wrong. I still have to focus on myself, to develop my skills and abilities, but I must also engage actively with those who rarely come into contact with the world of the blind, to demonstrate what blind people can do, what they have already done, and to urge them to trust in the abilities of the blind.
This, I believe, is the better path, and it always has been. By working as a blind person to improve the lot of blind people, I serve not only myself, but the wellbeing of other blind people and of society at large. As you can see, however, I was not drawn to it by any special virtue of my own. It became my only option when the path of self-presentation closed. I was driven to advocacy by self-interest, but the process has taught me that it is always better and always necessary to advocate for the equal treatment and welfare of others, whether or not their trouble is also mine.
Luckily, advocacy for the blind has come a long way, in the hands of better and more qualified people than myself. Many pioneers have come before or are working now to improve the circumstances of the blind. Blind people want to support themselves, and to contribute to their families, their communities, and their society. They are advocating for themselves to be given that opportunity, and developing the tools they need to capitalize on it.
Since I have gone blind, I have met a host of bright and capable blind people working in almost every field: academics, scientists, engineers, coders, designers, filmmakers, woodworkers, tinkerers, lawyers, politicians, public servants.
More than ever before, blind professionals have set precedents that blind children and newly-blind adults can follow into almost any career or vocation. If blind people continue to receive educational and professional resources, we will grow our numbers in every sector of work and life. Blind people in the workplace will become less of a rarity. Someday, the intelligence and competence of the blind will be seen everywhere.
And when something is seen everywhere, there is no more reason to stare.
On the recommendation of blog reader Margaret, I’ve been reading through Norman Doidge’s book, The Brain that Changes Itself. The book investigates neuroplasticity, the process by which the brain rewires itself and changes its physical structure in response to specific demands. There are a lot of interesting insights in there for people with sensory loss, and I’m already planning to write a longer post about it once I finish.
In the meantime, I just wanted to share a short passage that caught my attention, and a few thoughts about it. Doidge writes:
I was at a dinner party with a friend, whom I shall call Emma; her writer husband, Theodore; and several other writers.
Emma is now in her forties. When she was twenty-three, a spontaneous genetic mutation led to an illness called retinitis pigmentosa that caused her retinal cells to die. Five years ago she became totally blind and began using a seeing-eye dog, Matty, a Labrador. Emma’s blindness has reorganized her brain and her life. A number of us who were at the dinner are interested in literature, but since she has gone blind, Emma has done more reading than any of us. A computer program from Kurzweil Educational Systems reads books aloud to her in a monotone that pauses for commas, stops for periods, and rises in pitch for questions. This computer voice is so rapid, I cannot make out a single word. But Emma has gradually learned to listen at a faster and faster pace, so she is now reading at about 340 words a minute and is marching through all the great classics. “I get into an author, and I read everything he has ever written, and then I move on to another.” She has read Dostoyevsky (her favorite), Gogol, Tolstoy, Turgenev, Dickens, Chesterton, Balzac, Hugo, Zola, Flaubert, Proust, Stendhal, and many others. Recently she read three Trollope novels in one day. She asked me how it might be possible for her to read so much more quickly than before she went blind. I theorized that her massive visual cortex, no longer processing sight, had been taken over for auditory processing.
Naturally this caught my eye, since I have RP and—like Emma—have taken to consuming most of my books in audible form. I too have increased the speed incrementally, and now listen at between 400 and 450 words per minute.
Anyone who has heard blind people use their phones knows this is pretty common. The advent of smartphone technology in the decade since this book came out has improved text-to-speech synthesis by leaps and bounds over the old Kurzweil machines. It is cheaper and more widely available, and the voices are more pleasant and natural-sounding, clearer and easier to understand at higher speeds.
Now that I’m used to it, I actually love using my phone to listen to books. For one thing, the high rate of speed keeps me engaged and focused. I know exactly how long it will take to read a book, because my reading app tells me, down to the second. And It makes note-taking easy—I just pause, highlight the text I want, and export all of my highlights once I’m done with the book.
But there’s good news for those of you whose eyes still rule your brains: this is not some kind of blind superpower, and you can learn it too. I know, because my wife Kristin does it, and her vision is completely intact. She found herself getting impatient with the pace of audiobooks and podcasts and, since she knew I listened fast, she started increasing the speed. Now she listens to everything sped up anywhere from 1.5x to 2x normal speed, depending on what it is and what else she is doing at the time.
You can always learn new skills, even if large tracts of your cortical real estate haven’t been recently vacated. Much of the rest of Doidge’s book discusses how regions of the brain can be recruited for novel tasks, at the same time as they continue to do their old jobs. So it seems hiss explanation here is overly simplistic. Blindness had certainly prompted changes in Emma’s brain, but some—like fast-listening—could have happened even if she was sighted.
Brain function is not a zero-sum game, where gains in one domain can only happen at the expense of another. We haven’t found—or even gotten close to— the limits of the human potential to learn. We don’t know how many skills a person can master, or to what depth. The brain is glorious in its flexibility and ability to change, at any age and in any circumstances..
I’m excited to share more from this book and a few others I’ve read recently in the same vein, they all tend to show the benefits of that hard work I wrote about last week. The grueling work of learning to live again without sight not only allows us to lead happy and fulfilling lives. but could protect the health and longevity of our very brains.
There’s a saying among people with Retinitis Pigmentosa: “Being blind isn’t hard. Going blind is hard.” I’m not sure that being blind is easy, exactly, but I do believe that this season, the transition between sight and blindness, will probably be one of the hardest of my life.
Part of this is the basic sense of loss, and loss of control. Something I once had is disappearing, and there is nothing I can do to stop it. I don’t know—can’t know—what I will be able to see next year this time, or five years down the line. It’s hard to literally watch my vision spark and fizzle away.
But that sense of loss isn’t really the hardest part. The hardest part is just how much work it is to go blind. Because I’m not just losing my sight; I’m losing all of my habits, routines, and processes that rely on it.
Every time I use my eyes to locate something, track something, or assess something, to organize or to remind myself of something. Every task that relies on even the tiniest bit of visual information-gathering. All of them have to be reconsidered and relearned.
Because of course there are different ways to do most of these things. I can replace my lost abilities, can replace the visual information with information from my other senses or my pieces of assistive technology. But it means changing the way I’m accustomed to doing almost everything I do.
It means adaptation, and adaptation is hard.
Learning—at every turn, in every part of life, every day—is exhausting.
And demoralizing. All of these things I’m learning? They are things you’re supposed to learn as a child, not in your thirties. Actually, they’re things I did learn as a child. I learned them at two months, when I smiled back at faces that smiled at me, at three months when I grabbed a toy and shook it for the first time. I learned them when I sat up, crawled, took my first steps. When I learned to read the menus on our first computer, and went from there to reading chapter books, novels, and a list of languages stretching back to the dawn of history.
I learned them over the course of a lifetime, one skill building on another. Skills so basic and so foundational we barely think of them as skills at all. Skills that need to be mastered to the point of effortlessness so we can focus our energy and attention on the next, greater height. Now much of that knowledge and skill is becoming useless.
Many days, I feel like I’m spending all of my energy digging myself out of a hole, or bailing out a leaky boat. Like I’m running as hard as I can just to get to the starting line—never mind the finish line.
I miss the feeling of progress, the feeling that the work I’m doing is moving me forward, instead of just keeping me from falling behind, or falling apart.
And when will it end? RP is a long and slow disease. I’ll be living in this process for years, for decades even, weaning myself off of vision in bits and pieces, one task, one process at a time.
It will be hard, grueling at times, but the alternative would be much, much worse. Refusing to face the difficulty head-on and avoiding the hard work would lead somewhere worse than daily exhaustion. It would lead to stagnation and despair, and that’s something I refuse to tolerate.
So I’ll keep working, facing the days when simple tasks become suddenly arduous and stressful, finding new ways to do them, and then not giving up until they are mastered again. And hopefully, with each new adaptation and each new skill, it will get a little easier, until someday I reach that place where I can say “Going blind was hard, but being blind isn’t.”