Dark Side of the Cure, Part One: Where is Hope?

A photo of a lunare eclipse, including the dark side of the moon. See what I did there?

This is an exciting time in medical research. It seems like every time I turn around, a new headline heralds the imminent end of blindness. Stem cells, gene therapies, artificial retinas—with all the broad promise and breathtaking progress, surely there will soon be something to give blind people hope!

It’s an exciting time, all right, but I’m getting less and less excited about it.

I used to track everything, from active clinical trials all the way down to promising experiments on rats and mice. Recently, though, I’ve been losing track of what trial is in which phase, which ones are progressing and which are abandoned.

I’ve found myself, in general, less interested in a cure. And not just less interested—sometimes I feel outright squeamish about it.

Why? A cure for blindness seems like a cause without a downside. So much unnecessary pain and hardship could be prevented! Why wouldn’t I be interested?

Well, dear reader, keep going and I’ll tell you. This post is the first in a series, in which I discuss a number of my reservations about the prospect of a cure. The series isn’t meant to be balanced or give a full picture of my views; instead, I aim only to bring up a few points that are almost always left out of the conversation. The first post is personal, the middle two are societal, and the fourth gets almost philosophical.

***

Here is the personal: I no longer hope for a cure.

Don’t get me wrong. I’m not in despair. I haven’t gotten jaded because they always say the cure is “five years away,” just like they’ve said for the last fifteen or twenty years. What’s happened is, I’ve stopped placing my hope in the prospect of a cure at all, because there is plenty of hope in a life of blindness.

Hope is a slippery word. It always points to a brighter tomorrow, but beyond that it can mean a lot of things. There are different kinds of hope, different ways of imagining that brighter tomorrow and how it will get here.

There is a kind of hope that sits and waits and watches. It is a hope that sees help on the horizon, coming from outside at a time unknown to swoop in and make things better.

This is the hope for a cure.

But this is hope without control, and hope without agency.

I cannot control the pace of discovery, testing, or development. I can only watch and wait. And while I watch and wait, life will pass me by. Tracking the progress of research in expectation of a cure takes time and energy, and places my focus on something I can’t control. It distracts me from the life I am living now.

But there is another kind of hope: an active and engaged kind of hope, a hope that buckles down, digs in, and gets to work. A hope that says “with effort and determination I can get from where I am now to where I want to be.”

This kind of hope is described by psychologist C. R. Snyder as a cognitive process with three parts: goals, pathways, and agency.* This kind of hope defines a desirable end, plots a viable course to that end, and works hard to get there. This kind of hope finds new ways when the path is blocked, and continues to strive when the road is uncertain.

In case you hadn’t guessed, this is the kind of hope I prefer, and it has nothing to do with a cure. It is not hope that someone or something will swoop in and rescue me from my wretched existence, but the hope that I can make tomorrow a little better than today by my own careful planning and diligent effort.

It is hope that says life with out sight is not a tragedy.

I have come to see that life can be lived, and lived well, while blind. Those times before, when I would take a deep dive into research on retinal regeneration, came almost inevitably after I realized I could no longer do something the same way I used to, when I could see a bit better. What was I going to do? How could I keep on moving forward?

And yet, move forward I did, because the alternative was to fixate on the past, the things I had lost, and long for a solution that was out of reach and out of my control.

So I have chosen the second kind of hope, and I have chosen to focus my attention and energies on setting goals, finding ways to reach them, and putting in the work to get there.

And this has led, at least in part, to my squeamishness about a cure. It strikes in conversations, when someone mentions an article they saw, or a bit on the nightly news, and they express their joy at the hope this will bring to blind people. The hope that someday soon, my sight will be restored.

And I realize, with a sinking knot in my stomach, that the restoration of my sight is more important to them than it is to me.

Sure, it shows that they care. It shows that they want the best for me. But it also shows that they don’t know what is best for me. They talk as though blindness made life an inescapable misery and a cure were the only thing that could offer a life full of meaning and joy.

But I do not place my hope on a cure, and there are many, many like me—blind people who do not see blindness as an insurmountable obstacle. It is an inconvenience, a challenge, a target for prejudice and discrimination, but it can no more kill our hope for a good life than any other feature of our bodies or personalities.

There is already plenty of hope for blind people, with or without a cure.

* C. R. Snyder. The Psychology of Hope: You Can Get There From Here. Free Press, 1994.

Pride and the Fear of Prejudice: Reflections on Picking Up a White Cane

A photo of Eric sitting at a table, balancing his white cane on one finger.

“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.