blindness

Two new Online Articles

Posted on by Eric Harvey

I had two articles published online recently, but was too consumed with preparations for the Society of Biblical Literature’s Annual Meeting to remember to post about them. Here they are for your perusal, better late than never!

The first is a short piece at theTorah.com on the scene in which Jacob deceives his father Isaac to receive the blessing meant for his Brother Esau. If you’ve ever found this episode a bit hard to believe, you’re not alone. Many ancient and modern interpreters have hypothesized hidden factors that make it more plausible, but in the end this (and other biblical stories about blind people) reveal more about the literary meanings attached to blindness than about blindness itself.

The second is a pedagogical write-up at Ancient Jew Review, based on my blog series “Abortion,the Bible, and Us” from last year. If you or anyone you know is looking for lesson ideas for undergrads in biblical or religious studies, this might be a good place to start!

Enjoy, and as always, let me know what you think!

“Not Seeing, Unseeing, and Blind:” New Article and Blog-Only Bonus Content!

Posted on by Eric Harvey

I have a new article out in the Journal of Biblical Literature (vol. 42 no. 3). The title is “Not Seeing, Unseeing,and Blind: Disentangling Disability from Adjacent Topoi in the Hebrew Bible,” and it is part of a broader research project reassessing the portrayal and metaphorical use of blindness in biblical texts and the ancient Middle East more broadly.

It argues that Hebrew biblical texts have a very limited range of blindness metaphors, and that several texts that have historically been identified as blindness metaphors originally had nothing to do with blindness at all. I structure it around the famous biblical line “they have eyes, but do not see; they have ears, but do not hear!” Variations show up in five different places in the Hebrew Bible, meaning very different things and revealing different aspects of the boundaries of blindness and disability.

IF you want to read it but don’t have institutional access, just let me know.

Bonus Content!

Sometimes, when you write articles for academic journals, they make you stick to the word count and you have to cut out fun tidbits that, while fascinating, don’t really contribute to the argument all that much. But lucky you! Since you read my blog, you get to read about one such little tidbit.

That biblical phrase above? The Bible was not the first to use it. Centuries before any of the biblical texts I discuss were written, it appeared in a Sumerian poem first published in 1977 under the catchy title (The GIR5 and the ki-sikil.”*

This photograph shows the front side of a small clay tablet with the Sumerian elegy written in cuneiform script.

The obverse (front) of tablet BM 24975, which contains the poem in question

[Photo © Trustees of the British Museum]

The ki-sikil is quite clearly a girl or young woman, but the identity of the GIR5 (or KAŠ4, if that’s your style) is more ambiguous. The basic meaning of this term is some kind of runner, messenger, or traveler, but where the young man has gone and why are never clarified. In the first 20 of the poem’s 49 lines, someone tells the young woman to prepare for the arrival of the GIR5.

Then the young woman starts speaking, saying that her GIR5 has arrived, yet not arrived. She says

igi in-tuku igi nu-mu-ni-dug-a 

ka in-tuku inim nu-mu-da-ba-e 

He has eyes, (but) he does not see me.

He has a mouth, (but) he does not speak

(lines 39–40).

As her poetic monologue progresses, it becomes clear that the woman’s GIR5 has not returned alive from his journeys. Scholars are divided on whether the GIR5’s body has been literally returned or is being represented here by a figurine, but in either case the woman proceeds to fulfill the rites of death, mourning, and offerings for those who have gone down to the netherworld.

Just like most of the biblical versions of this line, “The GIR5 and the ki-sikil” uses it to describe something that

  1. has eyes
  2. can’t see
  3. isn’t blind

If the GIR5 is a figurine, it is similar to the litanies of mockery directed at foreign gods in Psalms 115 and 135. IF it is a corpse, it has no biblical parallel and represents a unique usage of this ambiguous and versatile couplet.

I should add that I’m not saying the there’s a direct line of borrowing from the Sumerian elegy to the pre-exilic biblical prophets—a gap of more than a thousand years separates the two. It’s just fun to note that someone had the idea long before the texts that made it famous.

 

*Samuel Noah Kramer, “The GIR5 and the ki-sikil: A New Sumerian Elegy,” in Essays on the Ancient Near East in Memory of J. J. Finkelstein ( ed. M. de Jong; Hamden, 1977), 139–142.

Book Review: The Country of the Blind by Andrew Leland

Posted on by Eric Harvey

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I just finished The Country of the Blind: A Memoir at the End of Sight by Andrew Leland, and recommend it highly!

I’m always a bit leery of blindness memoirs, but this one joins M. Leona Godin’s Their Plant Eyes (2021) as a truly excellent recent entry in the genre.

This one hit closer for me, since Leland’s experience has so many striking parallels with my own. Like me, he has one of the many genetic disorders that get lumped together into the junk diagnosis retinitis pigmentosa, though his vision is shrinking from the outside in while mine is fading from the center out. We both had visual impairments as children, but only had to confront the transition to blindness in our thirties, in the context of career, marriage, and life with young kids.

There were so many sparks of recognition as I read, an eery number of shared experiences. I also sat in those rolling chairs at the Massachusetts Eye and Ear Infirmary for a visual fields test, wore the Clockwork Orange electrodes on my eyeballs for an electroretinograph, and encountered their strange reticence to inform patients that they had crossed the line to “legally blind.” I received braille training from the Massachusetts Commission for the Blind, though my teacher was more knowledgeable than his (and stricter about technique).

As Leland described his first experience at the annual convention of the national Federation of the Blind, I was thinking back to my first (and, to this point, only) experience there. Then he mentioned the topic of the presidential address, I realized that he was talking about the same year I had attended. In fact, I show up briefly in the book, unnamed, as one of the scholarship recipients he ignored to focus on a much more interesting conversation with a 10 year old at his table (a decision I do not begrudge!).

But the recognition went far beyond the surface parallels. Many of the questions Leland asks and themes he explores are the same kinds of things I have thought about as I entered into blindness. What will blindness mean for my own identity? For the ways others identify me? I, too, wondered where the point was on this gradual journey where I could legitimately adopt the label “blind.” I struggled with using my white cane in public and the shifts in perception it provoked. I wondered about the changes that screen readers and braille would make to my writing and scholarship. I felt the frustration of reading children’s books more slowly than a first grader.

Questions of blindness and disability in society also gained sudden urgency, and I too left my vaguely benevolent obliviousness to explore evolving frameworks of disability rights, disability justice, and intersectional cross-disability solidarity. I became aware of the care and ingenuity of disabled communities and the creativity and innovation that they apply to the misfits between their bodies and the built environment.

All of these things Leland examines with curiosity and nuance. He can only do so much in a memoir of readable length, but he leaves plenty of breadcrumbs for readers who want more, pointing toward works in disability theory, history, and literature that can provide more depth and detail.

When I was first coming to grips with my own transition to blindness, I made everyone I know read John M. Hull’s memoir, Touching the Rock. It is a movingly written and insightful account of his loss of sight, but the longer I live as a blind person the more I think it gave the wrong impression. Hull emphasizes the negative and the tragic in a way that reinforces the pervasive assumption that blindness is to be feared and pitied.

Leland, on the other hand, presents blindness simultaneously as loss and gain—as a disability that obscures visual knowledge but also brings revelations about self, society, and human possibility. This is much closer to blindness as I have experienced it. Without eliding the difficulty of losing vision and learning new ways of being and living, he makes it clear that blindness is not all loss and not a tragedy.

At this point in my life, I’ve mostly left the liminal state Leland inhabits in the book behind. Blindness is solidly a part of my life, and though practical accommodations and adaptations will continue as the rest of my sight fades, the fundamental shift of identity no longer feels as intense or urgent. Although I have blog posts (and abandoned drafts) aplenty on many of the topics Leland covers, I don’t think a long form treatment of becoming blind is in my future. Now I’m just glad I have The Country of the Blind to recommend to anyone who is curious, and I wish I’d had it years ago!

Audiobooks are Books, Too

Posted on by Eric Harvey

Every so often, some iteration of the same debate pops up somewhere on the internet: does listening to audiobooks really count as reading?

Predictably, this takes the form of one person calling out another because they didn’t really read a book, they just listened to it. Audiobooks, in other words, Don’t “count” in the same way print books do.

Now, I’ve interacted with the written word in a lot of ways—eyes on print, fingers on Braille, and audio red by humans and synthesized by text-to-speech. So I have some thoughts about this. I wrote them out in a massive twitter thread, and a few people asked me to publish it here as well. Here it is (slightly cleaned up and with links to relevant resources).

***

 

First Things: Words and their Jobs

First, let’s take a brief foray into linguistics and acknowledge that words do not have inherent meanings. People use and combine words to create and communicate meaning with others.

As semanticists say, “Words don’t mean. People mean.”

And in different contexts, people use words to mean different things. For the verb “to read,” there are three relevant usages to consider:

  1. reading as an ability
  2. reading as an activity
  3. reading as an accomplishment

To understand the differences and why they matter, we have to think historically. As time passes culture, technology, and lifestyles change in ways that create new communicative needs. Most of the time, these needs are met not by inventing wholly new words, but by adapting pre-existing words by analogy. The process by which this happens is seldom reasoned or systematic, tending rather to be intuitive and incidental.

Tactile writing is only two hundred years old and audiobooks are less than ninety, so it shouldn’t be surprising that our language has not fully adapted to their use. We are recycling the language of older technologies—spoken language and visual writing—to describe these new things and the ways we use them.

In the case of Braille and other tactile writing systems, the analogy with visual writing was clear and straightforward. Both used characters in a sequence to represent language across a page or other flat surface, and both were stable over time. Thus, the adoption of “reading” and “writing” language presented few problems outside of very technical contexts.

(Note—I don’t know if there were debates in the 1800s over whether the verb “to read” could be legitimately applied to Braille. If there were, that would be super interesting and I’d love to see them. In either case, reading quickly became the dominant way of talking about consuming Braille)

Controversy over audiobooks, I think, stems from uncertainty over which pre-existing technology they should be analogized to: printed texts or spoken language. The format is auditory, and thus resembles speech, but books, magazines, newspapers, signs, menus, etc. . are understood as essentially textual entities, which are read.

So in our language, do we privilege the format and delivery method, or the original/essential nature of the content?

The problem is different in each of the three usages of the verb “to read,” because each at its heart is trying to convey different information. Lets consider each in turn:

1) Reading as an ability

Basically, this answers the question “can you read?” In other words, if presented with a given physical object containing text, will you be able to decode its meaning?

There’s a lot to unpack about reading as an ability, but I’m not going to do it here. In this context, I think it’s safe to say that if you cannot read at least one print or tactile script in at least one language, you should not say you can read.

However, that doesn’t get to the heart of the debate or the ways people use the reading/listening distinction to flex on each other.

2) Reading as an activity

This answers the question “what are you doing?” Consider four answers:

  1. “I’m reading a book.”
  2. “I’m listening to a book.”
  3. “I’m listening to an audiobook.”
  4. “I’m reading an audiobook.”

If we imagine ourselves as sticklers who insist that print and audiobooks are so different that they require different verbs, then only the first and third answers make any sense at all. I mean, I suppose I could press my ear to my paperback copy of War and Peace, but I won’t get much out of it).

Now consider another scenario. I am pointing my phone at a large sign. I have the Seeing AI app up and it’s reading any text that comes into my camera’s view. You ask “what are you doing?” Two possible answers:

  1. “I am trying to see what that sign says.”
  2. “I am trying to read that sign.”

Now, you and I the imaginary sticklers know that both of these are absurd. I am not reading, in a literal sense, nor will I ever truly *see* what it says. What I should say is “I am pointing my phone at that sign so it can feed the image into an optical character recognition engine then translate the results into sound using text to speech software so that I can apprehend the information encoded on its surface.”

But the point of the first two answers is not to communicate the sum of their words. They are trying to communicate a more general point: I am trying to get the information from that sign into my head using a newfangled kind of technological mediation.

There are times when we can all turn off our inner literalists and realize that “reading” can be shorthand for getting textual information from a physical object into our heads.

So let’s not be sticklers, ok?

Of course, there may be times when it is important to specify the exact mode and method we used to apprehend some bit of text. This should be done to prevent or correct misunderstandings, but it applies equally to Braille and print.

For example, if a sighted someone asks to borrow your copy of 20,000 Leagues Under the Sea, you might disappoint them by saying you have it on audio, but they would probably not be thrilled if you dropped off ten massive Braille volumes, either.

And that leads to usage number 3.

3) Reading as an accomplishment

This is where it gets real, because this is where people start adding value judgments and putting each other down.

The pertinent question here is “did you read X?”

I often hear people say things like “you didn’t actually read X, you just listened to it.” What’s the point of saying this? It does more than maintain a procedural distinction, it establishes a hierarchy where reading is superior and listening is inferior. It implies that listening to a book is not an accomplishment in the same way that reading it visually or tactilely is. In some sense, it doesn’t “count.”

The foundations of this hierarchy lie in cultural notions regarding the types of material that are usually conveyed in written and oral form and the relative merits of each. Books, especially, are prestige objects because of their historical associations with education and class privilege. Historical roots notwithstanding, though,, is this hierarchy justified? Is there any inherent superiority to reading words from a page by eye or finger as opposed to hearing them read or synthesized into speech?

It depends on our goals. In my research, I use Braille for close reading (especially in non-English languages) and audio to work quickly through long articles and books. Keeping two lists in my head—one of things I have read in Braille and one of books I have listened to—would be untenable and pointless.

This is because the point of saying I have read something is to indicate that I have interacted with the information it contains and internalized it to some degree. If it could be demonstrated that comprehension and retention rates differed significantly between auditory and visual/tactile book input, then I could be convinced that we should insist on the terminological distinction. But they do not.

Neurological imaging studies reveal that listening to audiobooks activates the same cognitive and emotional regions of the brain as reading print, and tests of comprehension and retention do not show significant differences between audio and print consumption of text.

Additionally, a moment’s reflection reveals that not all visual or tactile reading leads to the same learning. Sometimes print and Braille reading are done with care and attention, and sometimes they are done while unwilling or distracted. I have learned a lot from reading print books and articles, and I have finished others and realized immediately that I could not tell you anything about what I had just read. The same can be said for audio reading. Most often, the returns we get from the time and energy we invest in reading have more to do with our focus and attention than with inherent qualities of the medium or modality.

To my mind, then, insisting on a value distinction between print/Braille and audio is baseless and counterproductive. The value of tine spent reading is in the changes it makes to your base of knowledge and depth of thought. Neither of these result directly or necessarily from the part(s) of your body you use in the process. So as a flex?? To boost your own intellectual achievements and cast doubt on those of others? It doesn’t work and it doesn’t make sense.

To sum up, here are a few takeaways:

Should we learn Braille? YES. I hope nothing I’ve said here implies that I don’t think Braille is important. Learn Braille to the extent that you are physically and neurologically able, because it gives you the opportunity to interact with information in a greater variety of ways in a greater variety of circumstances. Even if all you can do is read bathroom signs and label your medications, that’s better than nothing. And if you gain the fluency to read whole books? Go to town!

But should we enforce the distinction between Braille and audio, relegating audio always to second place? NO. Indulge your curiosity. Read widely in whatever medium is most accessible to you. Expand your perspective with print, Braille, audio, whatever. Don’t be discouraged and don’t be held back. Read read read read read!

And come on, people, if someone says they read a book and you KNOW they listened to the audio, don’t call them out or “correct” them on it. There’s no point to it and it’s not a good look.

Basically, be as precise as you want but don’t try to prove Braille is important by denigrating audio.

Braille is important.

Audio is important.

Nitpicking each other’s language to enforce a baseless distinction between the two is not.

Scholar Strike 1: I Don’t See Color

Posted on by Eric Harvey

“I don’t see color.”

We’ve all heard this line in conversations about race. It is almost a standard response to accusations or insinuations of racism or racial prejudice. It is the mantra of so-called “Colorblind Ideology,” the belief that the best way to end racism is to stop considering race altogether.

The assumption, I guess, is that racism stems directly from the perception of skin color, and simply wouldn’t be possible without it.

I have a problem with this. You see, I don’t see color.

No, but like, literally. I really don’t see color, not real color anyway. Sometimes my visual field pulses with red and blue light, or turns entirely pink for no apparent reason, but those are artifacts of my optic nerve and brain. Colors from the outside world don’t make it inside. Not anymore.

I grew up with color perception, so as a child and young adult I could see skin tone as well as anyone else. But as my vision has deteriorated, I find myself less and less able to tell the color of a new person’s skin. My color perception is nonexistent, and even my ability to tell contrast is greatly diminished. 

Often, I find myself a bit adrift, thinking that some information about someone’s racial or ethnic identity would be useful. So despite being literally colorblind, I cannot deny the importance of race.

But maybe that’s just me. Maybe I’m just used to thinking about race because I grew up sighted. Maybe I’m just missing the visual information that once came so easily. Wouldn’t people who had always been blind be free from concerns about race? Wouldn’t they “not see color” in the metaphorical as well as the literal sense?

Good question., Luckily someone did some research on that.

In his 2015 book Blinded by Sight: Seeing Race through the Eyes of the Blind, legal scholar Osagie Obasogie undertook to discover the link between the visual stimulus of skin color and the social and legal phenomena of racial classification, prejudice, and discrimination.

Obasogie was motivated by the basic question “how do blind people understand race?” (p. 1).

and he is reacting against the naive general assumption that “blind people simply cannot appreciate racial distinctions and therefore do not have any real racial consciousness” (p. 2).

This assumption rests upon a common sense view of race that he calls race ipso loquitor, or “race speaks for itself” (). That is, race is an obvious category that derives directly from salient visual markers such as skin color and physical features. If race is visually self-evident, how important can it be to the blind? In interviews with sighted participants, Obasogie found that most thought race would be irrelevant or unimportant to the way blind people live their lives.

Interviews with blind people showed something quite different.

Obasogie interviewed 106 participants from multiple racial and ethnic backgrounds who had been totally blind from birth. Unlike me, they had never had vision and thus had never experienced race as a visually self-evident phenomenon. 

It was striking, therefore, that the blind participants defined race primarily in visual terms. Despite having no direct access to visual information on skin tone and other physical characteristics, most participants initially described race in terms of color, and then supplemented that definition with other factors such as ethnicity, ancestry, geography, and genetics. Some described their attempts to use other other information—accents and speech patterns, hair texture or body odor—as proxies for visual information when trying to ascertain peoples race, but noted also the high error rate in attempts to do so.

Regarding the significance of race, understandings varied more across lines of race than across lines of visual acuity. That is, blind white people and sighted white people had more similar views on race than blind people of different races or sighted people of different races. Most notably, blind white people across the board tended toward a view of “white racial transparency”—that is, they thought of race as something that other people had, not themselves. This view has been characterized as a view of white as the default—a baseline to which “ethnic” attributes are either added or subtracted. Non-white participants, on the other hand, tended to see race as an attribute possessed by and significant to everyone. 

Blind white participants were also the only ones to use discrimination against disabled people (ableism) as an analogy for racial discrimination, and to understand the struggle for civil rights by both racially minoritized and disabled communities as essentially the same. Non-white participants, on the other hand, tended to frame disability and race as two entirely different and separate experiences and identities. As a side, note, this has long been and continues to be a common point of strife in the disability activist community, which skews heavily white and has historically marginalized the voices and perspectives of disabled people of color.

So far, the findings show more similarity than difference between blind and sighted people of the same racial background. This alone calls into question the notion that race visually speaks for itself, since blind people tend to share the same racial identities and assumptions as the rest of their racial group.

This became explicitly apparent when participants were asked to describe how and when they became aware of the existence and significance of race, and how it factors into their everyday living and decision making. Participants told story after story of parents and authority figures who made sure to instill racialized knowledge in blind children and, to some extent, in blind adults as well. 

Sighted children can pick up on racial cues non-verbally, noting in course of regular events the correlation between racial identity and adult attitudes, body language, and types of speech. Blind children cannot correlate behavior with visual features in the same way, and thus did not generally come to awareness of race on their own. Instead, many adults felt compelled to make the implicit explicit—to ensure that blind children receive the racial information that they deem necessary to live within their place in society.

Blind participants recounted common experiences in their childhood, wherein they would meet and converse with someone without knowing their race. Afterward, and adult would inform them of the person’s race and perhaps give cues about whether the person was suitable to socialize with or not. Such experiences reinforced the idea that race was an important marker not only of identity, but also of status.

White parents also made sure to highlight the racial housing segregation that still exists in many cities and towns across the United States. They would inform their child when they would cross over the line dividing white and Black sections of town, emphasizing that Black people lived in separate areas, that the conditions in these areas were inferior, and that these inferior conditions resulted from the inherent shortcomings of their race.

Racial boundaries were drawn and enforced with special vigor when it came to romance, particularly for young blind white women. One participant related a story in which she brought home a picture of her third-grade boyfriend. Her parents looked at it and said “Crystal, he’s colored.” 

Confused, she confirmed that it had been taken with color film.

They then gave her a lecture on race and the unsuitability of Black boys as romantic partners. She describes the potent mixture of bewilderment and shame that she felt, driving her to destroy the photograph and cease speaking to the boy completely.

Quite a few participants reported that these childhood lessons stayed with them and still guided their behavior. Many were uncomfortable dating across racial lines, and made special efforts to ascertain the race of the people they dated before committing. 

Blind people’s experience with race is not a mere curiosity. It cuts to the heart of the illusion that underlies colorblind ideology. It shows that race, though understood visually by sighted and blind alike, is not an obvious or self-evident characteristic. It is not learned by observation, but by implicit and explicit instruction from a very young age.

The example of the blind throws the disconnect between colorblind ideology and social reality into stark relief. The racial distinctions, classifications, and hierarchies that sighted children learn implicitly from observation must be actively and intentionally taught to those who cannot perceive visual cues.

In some cases, parents went to extreme lengths to impress the importance of race on their blind children. Leaning into the apparent impunity with which they could lie about visual matters, they said things that would be amusingly bizarre if they were not so damaging. One mother told her daughter that mixed race relationships would lead to polka-dotted children. A small blind black girl was told she should not bathe with her white friend, because her black would rub off on her. 

As strange as these lies are, they are no more strange than the counterfactual definitions of race we use without question every day. No person has truly black skin, or truly white skin. Skin tones exist along spectra of colors and tones, which do not divide neatly into clear categories. Consider how often people are described as racially ambiguous, or the recent cases of Rachel Dolezal and Jessica Krug, two white women who successfully pretended to be Black for years. If race were a self-evident function of skin color, these cases should not be possible.

Race is not color, and color is not race.

Race is a socially created and maintained classification scheme with no defensible biological basis. The social processes that construct and perpetuate racial categories are not straightforward or empirical, but they cast themselves as such. Thus, colorblind ideology manages to hide its social construction behind a veil of straightforward common sense. Race becomes obvious. It becomes what is seen, not what is made and reinforced over centuries of social relationships and representations. 

But this is an illusion. Behind the common sense of racial self-evidence, the social creation and perpetuation of racial divisions and hierarchies continue. Racism cannot be undone simply by not seeing it, or by pretending not to see it. The next time you hear someone say they do not see color, or the next time you are tempted to say it yourself, think of me. Think of those who cannot see color in the most literal sense, but still recognize that they are not exempt from the racialized system in which we live. Race is all of our responsibility, and the first step toward dismantling racial injustice is recognizing its foothold in our minds.

 ***

For further reading on the shortcomings of colorblind ideology, see here and here. Also read Part Two of Obasogie’s Blinded by Sight and Michelle Alexander’s The New Jim Crow: Mass Incarceration in the Age of Colorblindness.

 

For further reading on the experience of blind people of color, see this recent piece by Anil Lewis: Being Black Helped me be Blind and Being Blind Helped me Realize that #BlackLivesMatter.”

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

Posted on by Eric Harvey

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

Posted on by Eric Harvey

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.