Dark Side of the Cure, Part Two: Mixed Messages

(This is Part Two in a series. If you haven’t read Part One already, you should)

 

A photo collage featuring images of blindfolded people from the How Eye See It campaign.

In the last post, I described how spending my time hoping for a cure crowded out and actually worked against me pursuing my other hopes and ambitions.

It doesn’t just work that way for people, though. 

The same thing happens on a societal level, when the quest to cure blindness takes place at the expense of those who are already blind. 

This might seem counterintuitive, so I’ll give an illustration. A few years ago, a non-profit organization launched a fundraising campaign called #HowEyeSeeIt, which has since become infamous in the blindness community.

 The goal of this campaign was to create a viral video sensation—kind of like the Ice Bucket Challenge, which raised so much money for ALS research. Instead of just doing a silly gag, participants were supposed to film themselves trying to do a basic task while blindfolded. Suggestions included making and eating lunch, doing household chores, or caring for your children.

But why would people watch the videos? Because it would create a spectacle, an amusing showcase of inept bumbling.

Blindfold yourself and make a mess of things—just like real blind people!

And why would people donate? Because participating would convince them of just how impossible it is to do anything without using their sight.

Blindfold yourself, and learn how unbearable it is to be blind!

Fortunately, the campaign never went viral, which is why you’ve probably never heard of it. Unfortunately, the other part does seem to be true. Blindfold simulations do make people more afraid of blindness and less confident in blind people.

A study by Dr. Arielle Silverman (herself blind) showed that participants in blindfold simulations actually leave with a lower opinion of blind people. From a blog post summarizing the research (the entire post is worth reading if you have time):

In one part of the study, after simulating blindness by having their eyes covered, participants believed people who are blind are less capable of work and independent living than did participants who simulated other impairments like amputation, or had no impairment.

In another part of the study, participants who were blindfolded said they would be less capable if they personally became blind and slower to adjust to their new world compared with study participants who weren’t blindfolded.

But isn’t it good that they’re learning what it’s like to be blind? Won’t it make them more considerate and sensitive to the needs of blind people? It would, if simulations really showed what it’s like to be blind. But they don’t. They only show what it is like to be blind with no education, skills, or experience.

It’s true that losing your sight can be scary and disorienting. But with education, skills training, and lifestyle adaptations, blind people can—and often do—live confident and fulfilled lives. The power of skills and experience cannot be communicated in a fifteen minute exercise, and participants leave with half the story.

The #HowEyeSeeIt campaign is just one example, of course, and most fundraising efforts aren’t quite so demeaning to the people they aim to help. But this one example reveals a fundamental question that looms over any effort to cure blindness: is it possible to respect the dignity and capability of people who are blind and still maintain the same urgency to find a cure?

For many blind people, thees two ideas exist in tension. Efforts to prevent or cure blindness are essentially good, but at the same time no cure is necessary to make life happy or worthwhile.

So go on, fundraisers, search for a cure. Just don’t frame it as the only hope for blind people. Don’t exploit sighted people’s fear of losing their sight. Don’t perpetuate false and frightening images of blindness. Don’t reinforce the low opinions and low expectations that have plagued the blind since time immemorial, because these burdens weigh much more heavily on the blind than blindness itself.

Low opinions and low expectations deny education when the students are apt and eager to learn.

They deny jobs when the skills are sufficient.

They deny a voice to those who are capable of understanding and advocating for themselves.

They deny the blind full inclusion and integration into society.

Prejudice and patronization are maladies that plague society, as real and as harsh as blindness itself. Any quest that seeks to cure blindness without also curing these is incomplete at best, destructive at worst. Let’s not pit these problems against each other. Let’s work on curing them both.

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.