Disability

“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!

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.”

Music and Blindness in Babylonia: New Piece on the Disability History Association Blog

Posted on by Eric Harvey

This is just a quick notice that a piece I wrote was just published on All Of Us, the peer-reviewed blog of the Disability History Association.

Don’t worry, though, there will be new content here soon! I’ve been writing and planning a few posts for the coming weeks and months, and should be posting them here in the next few days. In the mean time, check out the article, The Songbird: Linking Music and Blindness in Ancient Babylonia.

White Cane Awareness Day!

Posted on by Eric Harvey

A photo of me and my daughter walking on a sidewalk. I am carrying my white cane and we both have umbrellas, even though the rain has stopped.

Today is White Cane Awareness Day, a day to celebrate a tool that, despite its simplicity, remains one of the most powerful for independent living and travel among the blind.

I got my first cane in 2015. It came with my Orientation and Mobility training, provided free-of-charge by the Commonwealth of Massachusetts when I registered as legally blind. I will always be grateful that I went blind in Massachusetts, because the state-run Commission for the Blind provides excellent services and training for blind residents who want to keep working or re-enter the workforce. They gave me assistive technology and Braille instruction before I even needed them, so that I would be prepared when I did. 

Also there, and also before I needed it, I received training in proper cane technique—when I’m in motion the cane is in motion, skimming the ground or tapping in front of my hind foot. I learned how to make sure an area was clear before I stepped up or down a curb, and how to navigate staircases, using my cane to sense the beginning and the end. I learned how to read the traffic patterns so I could gauge when it was safe to cross, and how to aim so I would end up on the sidewalk instead of the middle of the intersection.

 I walked for miles through the chilly autumn air, wearing a blackout blindfold. My instructor followed a few steps behind, sometimes offering correction or advice, but mostly letting me find my own way using my cane, my ears, and my memory as guides.

It was challenging, sometimes frustrating, but I’m glad I got that training when I did. 

In 2016 we moved to California, and the cane didn’t leave my bag for a year. It’s not only that I avoided using it. I knew our neighborhood and felt safe enough walking most places without it.

But throughout that year I had the growing realization that I should probably start using it more often, especially at night and in crowded places. Yet that thought also filled me with that potent mixture of pride and fear familiar to many of us who are losing our sight. It is one thing to learn how to use a white cane; it’s quite another to need to use it.

In 2017, I wrote a long reflection on the emotional struggle, the pride and fear that keep us from carrying canes and the reality of prejudice and discrimination that justify that fear.  It is hard to so openly wield this signal of blindness, especially since most of us have tried for years to hide our fading sight from others.

But pragmatism has won out, as it usually does. Over the last year, my cane use has gradually increased. I carry it most of the time now, outside the house and a few short routes nearby. I wouldn’t imagine going somewhere new and unfamiliar without it. 

In many ways, it’s surprisingly comfortable. I’m sure people stare, as Kristin pointed  out last year, but I don’t notice that. Mostly I notice the stress that it removes from my walk, since I don’t have to stay on high alert for trees and people that materialize in front of me, or obstacles that leap from nowhere into the path of my shins.

My three-year-old daughter takes it in stride. Sometimes she tries to take it in hand, too, but I think we’ve mostly broken her of that habit. She knows it’s “daddy’s stick” and asks for one of her own. I might buy her one.

There are a few funny things. If I’m walking with friends and take my cane out, they often start giving me tips and information about the environment.

“There’s a curb coming up.”

“Trash can on your right!”

It’s ironic, because I took the cane out to get exactly the sort of information they are now providing. It’s like the cane primes them, reminds them that I’m blind, and prompts them to offer advice, just when I stop needing it. 

Every year, I’m sure the cane will become more comfortable, more indispensable, a more natural extension of my arm and my sensory field. My white cane is part of my life now, necessary for the basic functions of life. When I think of it these days, I don’t fear the message it broadcasts to the world; I simply appreciate its utility and the freedom it brings.

I know that the cane is still a marker of my blind identity, and that that identity will certainly create difficulties for me in this life, but that’s not the cane’s fault. It’s just doing its job.

Happy White Cane Day, everyone! 

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

Posted on by Eric Harvey

(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

Posted on by Eric Harvey

(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.

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.

Summer Doings and Things to Come

Posted on by Eric Harvey

It has been a long and busy year so far, and the blog has mostly lain dormant. Or fallow—let’s say fallow. That sounds like there are things going on below the surface, which there are. I have some pieces coming in the next month that I have been working on for a while.

But until I’ve put the last bit of polish on them, here’s a quick update about some important happenings this summer.

This year, I was honored to receive scholarships From the National Federation of the Blind (NFB) and the American Council of the Blind (ACB), two of the premier support, advocacy, and education organizations for blind people, led exclusively by blind people.

 As part of each scholarship, I was invited to attend the annual national convention for each organization. So in late June I traveled to St. Louis to attend ACB.

Photo of the Grand Hall at Union Station at Union Station Hotel, the site of the ACB national convention.

Union Station Hotel, site of the 2018 ACB Convention

And went straight from there to Orlando for the NFB.

A photo of the entire 2018 NFB Scholarship Class.

The 2018 NFB scholarship class(Credit: National Federation of the Blind)

Being in a conference hotel with 2000 other blind people is an experience that is hard to describe. On the one hand, it can be overwhelming. It’s loud. It’s chaotic. On the other hand, there is something comfortable about it. This space is governed by a completely different set of social norms. Sure, there’s a lot of bumping into people. There’s a lot of dueling canes. But it’s expected. No one got bent out of shape about it. No one felt like they had to look after me when I was trying to find my way. No one expected me to know who they are when they sat down next to me. It was a world where blind people were respected and blindness was not isolating.

And I met such fantastic people. I met people working in higher education, K-12, research, policy, law, computer science, robotics, writing and publishing—you name it, there are blind people doing it, and doing it well. 

I spent one delightful afternoon with a group of blind educators, sharing ideas on managing classrooms, developing curricula, and working productively with colleagues who don’t understand or sometimes even respect the blind people working beside them. We talked about everything from cell phone policies and managing the wriggly bodies of special needs children to using online learning management systems and dealing with institutional administrations and policies. It was a treasure trove of collective wisdom and the reassurance that others have already trod the roads that I am bound to travel. 

On another day I met with a small group of academic professionals and graduate students, and we talked about navigating higher education at all levels, from graduate study to tenure, and how to improve research done by and about disabled people in psychology, sociology, and the humanities. I am grateful for the insight, support, and vulnerability of these colleagues, who view success as a collective as well as a personal priority.

There were also groups for blind parents—especially important for me with the impending arrival of our second daughter in October! Blind parents have to do some things differently, and there is no need to reinvent the wheel when other blind people have already developed excellent techniques and successfully raised so many children, both blind and sighted.

The scholarship money I received this summer is great, and it will help me finish my Ph.D. strong (and hopefully in the next year, fingers crossed), but the true value of these scholarships comes from the people I was able to meet and the connections that will last for years.

If you are blind or going blind, I can’t recommend highly enough getting involved in a group of the organized blind. Blindness can be isolating, and inventing non-visual ways to do every little thing on your own in a visual world can be taxing and demoralizing. But many have come before, and built a foundation of knowledge and mastery that we all can learn from.

Here’s to many more years of collaboration and lives well lived!