Dark Side of the Cure, Part Three: Those Left Behind

(This is Part Three of a series. Start with Parts One and Two, if you haven’t read them already)

Photo of five blind hikers on a mountain trail with a slope upward on one side and a steep dropoff on the other.

Photo Credit: Volker Corell

“Better never means better for everyone,” he said. “It always means worse, for some.”

So goes the Commander’s famous self-justification in Margaret Atwood’s The Handmaid’s Tale, as he tries to defend the brutal social and political order his party has created. 

Now his is a pretty extreme dystopian case, and maybe invoking The Handmaid’s Tale is a bridge too far for this post, but that quote keeps bouncing around my head as I write this series, and it seems appropriate.

Curing blindness will make the world better, right? That’s why we’re doing it, right? 

Well, maybe. I’ll leave the more ambiguous parts of that question for the next post, but first we have to consider the unambiguous part—those who will get no benefit from a cure for blindness, and those who will actually be harmed.

So who suffers from the quest to cure blindness? The blind.

I’m not talking about the ones who get a cure; I’m talking about the ones who don’t. No matter how many causes of blindness we can cure or prevent, there will always be others we can’t. Injury, genes, disease, stroke—some variation or combination of these will always exist and cause blindness for some. We may decrease the number of blind people, but the truth is, the fewer there are, the harder their lives will become.

***

Let’s face it, for most of human history, life has not been kind to the blind. Prior to the 20th century, the two most common occupations for blind people were 1) begging and 2) nothing. There were some lucky few, fortunate enough to be born into wealthy families or supported by benevolent institutions, who could live well and developed their potential, but these were exceptions to the rule.

As a class, the blind still struggle, but their lot has gotten better. In the 19th century, Braille brought literacy to blind people in a way that had been impossible before, and in the 20th mobility aids like white canes and guide dogs opened up new possibilities for independent travel. In the same time period, a few forward-thinking schools for the blind shifted their approach from seclusion and protection (or seclusion and exploitation) to education and development.

But perhaps the greatest change has come through self-organization. In 1940, a group of blind people founded the National Federation of the Blind, the first education and advocacy group created and led exclusively by blind people, instead of just for them.

Nowadays there are three main organizations of the blind in the United States—the National Federation of the Blind, the American Council of the Blind, and the Blinded Veterans Association—and there are many more internationally. These organizations have different specific cultures and interests, but they all share one important feature: their leadership are all blind. 

These organizations understand the potential of blind people in a way that others never could and can advocate for their interests in a way that others never would.

The growth of the Organized Blind Movement, as it is called, was a turning point in the history of the blind. It allowed blind members of society to resist and transcend the paternalism and custodialism that characterized charities for the blind at their best, and the outright seclusion and exploitation that showed up at their worst.

This movement required a critical mass of blind people with the skill, knowledge, and motivation to form and administer alliances of their own. Blindness is a low-incidence condition, and many people (the blind included) do not regularly encounter blind people in their daily lives. Self-organization appeared in places where there were higher concentrations of blind people, and the effectiveness of these organizations has grown as more have heard about and been attracted to the movement.

It goes without saying that these organizations would be less effective if there were fewer blind people to join, run, and fund them, and fewer blind people advocating for their own interests.

So what lesson should we take from this? We can’t just call a halt to medical research so we can fill the ranks of our advocacy groups. We can’t deny people a cure based on the fear they will leave us behind.

But we can acknowledge the real cost that can accompany even good things, and we can listen to the concerns of those who foresee their own marginalization.

We cannot and should not stop the research, but we can strive to make sure that progress for some will not mean a return to the past for the rest—those who are, those who will remain, and those who will become blind

And maybe then, better can mean better for everyone.

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. 

 

What Would the “America First” Budget Mean for Me?

Ever since the White House released the blueprint for its “America First” budget, my email inboxes have been inundated with urgent pleas from organizations who would have their funding cut or eliminated under the new plan. After a few days, it became clear that these budget priorities would affect the work that I do and the ways that I do it on a daily basis.

Many things in this budget make me deeply uneasy, but this isn’t the place for a full analysis, and I am not a policy analyst. What I am is a person who works at the corner of blindness and academia, and I recognize things in this budget blueprint that would create very real difficulties for me on both of those counts. I will focus here on two specific cuts and the harm they would cause without creating any real benefit.

Research Funding

The “America First” budget blueprint calls for elimination of the National Endowment for the Humanities (NEH) and the National Endowment for the Arts (NEA; p. 5). These two organizations provide funding and support for projects and programs, large and small, in the arts and humanities. 

I have personally worked on research projects that were funded by grants from the NEH, and I have benefitted from many more. In a recent email to members, the president of the Society of Biblical Literature reported that SBL members have received over $7.2 million in research grants from the NEH. Further, the SBL’s Bible Odyssey website, a source for reliable, scholarly information on the Bible and Bible-adjacent topics, is made possible in part by a $300,000 NEH grant.

This is just one scholarly society. Scholars working in Egyptian, Syrian, Anatolian, and Mesopotamian studies also receive funding from the NEH. 

Their research links us to our shared cultural heritage. It connects us to the roots of Western society and the worlds from which our major religions sprang. If you cringe when ISIS bulldozes ancient gates in Palmyra, churches in Aleppo, or palaces in Nineveh, you should cringe when the humanities are dismantled at home. 

I might be more sympathetic to this budget reduction if the amount of money saved were not so extraordinarily small. The NEA and NEH each received about $148 million last year, meaning together they made up only 0.006% of the federal budget. Their elimination is an ideological and symbolic gesture that would do a great deal of harm while doing taxpayers very little good.

Educational Resources

According to the blueprint document, “[t]he 2017 Budget…continues support for the nation’s most vulnerable populations, such as students with disabilities” (p. 17). If only that were true. It seems that, in reality, these budget priorities would place a heavy burden on students with disabilities. For younger students, the emphasis on charter schools would probably end up reducing school choice and educational quality (see point 3 in this article). 

For me in particular, and other blind students, scholars, and citizens of all ages, it would mean increased difficulty in accessing books and other academic materials. The budget jeopardizes funding for the Educational Technology, Media, and Materials for Individuals with Disabilities Program, which benefits me through services like Bookshare.

Bookshare is an online library that provides accessible digital versions of print books to people who are blind, have a learning disability, or are otherwise unable to read print. Their catalog contains more than half a million books, and is growing quickly.

I use Bookshare literally every day—it is not my only source for accessible books, but it is a major one, and it has saved me dozens, if not hudnreds of hours of work in the past few years.

And this is why Bookshare is so important, for me and for everyone else: because it saves so much work. Bookshare is an incredibly efficient and economical program, and defunding it would make life more burdensome for students of every age and level, and would end up increasing costs for everyone. Here’s how:

Books enter the Bookshare library in two ways: either publishers send digital files directly, or volunteers scan printed books and submit their own files. When a volunteer digitizes a book, it takes a few hours to scan the book, OCR and edit the text, and prepare the file. After that, it can be downloaded and read in large print, Braille, or audio by students nationwide using any number of disability-specific apps and devices. There is some additional labor in maintaining the database and website, but it is minuscule in comparison with what would be required if Bookshare’s federal funding were cut.

If that happened, the burden of providing accessible materials to disabled students would shift to local school districts. Not all districts would be able to advocate with publishers as effectively as Bookshare, which would increase the burden on volunteers and paid school staff. That same 4-10 hours of work digitizing books would have to be done anew in every district in every area of the country.

This could only play out in two ways: either local taxes would increase to accommodate the increased need, or educational outcomes for disabled students would suffer due to lack of resources. More likely, both of these would happen to a greater or lesser extent in every school district, depending on the resources at their disposal.

I am a firm believer that U.S. schools should provide excellent educations to students with disabilities, so that they can become self-sufficient, contributing members of society. But I also believe that accommodations for students with disabilities should be made in the most efficient and effective way.

In the digital age, centralization is the best way to provide many kinds of accessible materials in the most economical wa  without compromising its quality or availability. A federal dollar simply goes much further than a state or local dollar. Cutting federal funding for accessible materials may appear to save money, but any savings will be offset by a manifold increase in costs at the state and local level. It helps no one, and hurts everyone.

Other Cuts

These are only two issues raised by the budget blueprint, but there are many other, darker parts of the White House budget priorities. The cuts to Legal Services could prevent citizens with disabilities from seeking and receiving justice from discrimination and mistreatment. Cuts to the Department of Labor, the Department of Housing and Urban Development, and various programs like Meals on Wheels could remove much-needed aid from the disabled, poor, elderly, or otherwise vulnerable populations in the U.S.

In short, these specific cuts and the “America First” budget priorities as a whole are hostile to academic learning and disabled citizens. Furthermore, any savings at the federal level would increase costs locally, creating a net harm to taxpayers. Pleas contact your legislative representatives and suggest budget priorities that do more than pay lip service to education and the idea of supporting vulnerable populations.

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If you would like to help support Bookshare, I would appreciate it! They have provided this very easy to use tool to write your representatives about it: Support Bookshare