I just had an essay published in Brandeis Magazine. It is a reflection on getting a Ph.D. while going blind, and on the personal and systemic factors that promote or impede success for disabled people. You can read it here.
“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.”
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.
Continuing the tradition I began last year, I’ve decided to celebrate the increasing availability of books to the blind by sharing my full 2018 reading list, with some of the best and most meaningful given special comment.
In 2017 I read 59 books, and thought I might have to slow down. So of course in 2018 I read 67 books! Many of them were meaningful and formative, and I struggle to narrow down the list to recommend just a few. Below are some notable works in no particular order, followed by the rest of my reading list.
The Remembrance of Earth’s Past Trilogy by Cixin Lio (The Three Body Problem, The Dark Forest, Death’s En)
This imaginative, thinky trilogy is quintessential speculative fiction for super nerds. If you like your novels pumped chock full of wonky physics and written in a non-Western cultural idiom, these books are for you.
The Broken Earth Trilogy by N. K. Jemisin (The Fifth Season, The Obelisk Gate, The Stone Sky)
I thought I had lost the taste for straight fantasy, but then I read this series by N. K. Jemisin. The world she builds here is spectacularly creative, and she delves deep into some very real and very rough parts of human nature. There’s a reason she’s just become the first author to win the Hugo award three years in a row (once for each of these books)—you won’t regret reading them.
Non-Fiction: Race, Society, and Inequality
The New Jim Crow: Mass Incarceration in the Age of Colorblindness by Michelle Alexander
A detailed and masterfully-argued examination of the changing face of racial discrimination in America. Writing at the height of the Obama era, when many Americans were heralding the onset of a post-racial society, Alexander revealed their optimism to be largely unwarranted. Discrimination is still rampant, though it now adopts subtler and less explicit means than slavery or Jim Crow segregation. Alexander shows how the construction of an unnecessarily punitive and differentially-applied justice system has effectively created a new iteration of the same old racial caste system—exploiting Black Americans for free labor, diminishing their economic prospects, and reducing their access to voting and other rights and responsibilities of full citizenship. All of this goes on within a culture of nominal colorblindness, a thin veneer of propriety and unbiased objectivity that peels away under Alexander’s relentless scrutiny.
Stamped from the Beginning: The Definitive History of Racist Ideas in America by Ibram X. Kendi
This book is dizzying in its scope and utterly surprising for many who learned a sanitized version of American history in school. Kendi defines three strains of thinking on race and traces them across four centuries through the life, work, and context of five paradigmatic American thinkers: Cotton Mather, Thomas Jefferson, William Lloyd Garrison, W. E. B. DuBois, and Angela Davis. Each of these individuals exhibits one or (more often) more than one of Kendi’s three strains of thought: segregationist, assimilationist, and anti-racist. Kendi does an excellent job of showing how racist ideas were created and perpetuated to justify exploitative economic practices, as well as how the particular expressions of those ideas changed and adapted to new cultural, legal, and economic context. Racist thinking has changed, but never disappeared from American life.
I have a few residual questions about the nature and scope of Kendi’s assimilationist category, but they do not diminish the overall value of the book. This book would pair well with Paul Ortiz’s An African-American and LatinX History of the United States or Karen Fields’ Racecraft, mentioned below.
Winners Take All: The Elite Charade of Changing the World by Anand Giridharadas
The world of big-money philanthropy operates under the assumptions that market solutions provide the best hope to rectify societal ills and that it is possible to become extremely wealthy in a way that also benefits society as a whole. Long an insider to this world, Anand Giridheradas has become disillusioned with these beliefs and argues effectively against both in this incisive book. He questions the basic premise that one can “do well by doing good,” that every problem has a win-win solution that allows for both the reduction of inequality and the accumulation of fabulous personal wealth. Instead, he urges the creation of more democratic and more egalitarian institutions and social structures to combat growing inequaltiy and the worsening prospects faced by many Americans.
Womanist Midrash by Wilda C. Gafney
Gafney combines rigorous scholarship and imaginative storytelling in this quest to rediscover important female characters of the Hebrew Bible. She provides fresh and well-argued interpretations of the text and explores the evocative importance of its gaps and holes. This welcome and challenging contribution honestly probes the concerns and perspectives of biblical women, addressing in the process a host of neglected questions that will benefit all readers and interpreters.
The Literary Imagination in Jewish Antiquity by Eva Mroczek
The Bible was not always the Bible. Before the diverse texts we now call biblical were gathered into one binding, each of them had a life of its own (and some more than one). They existed alongside and together with a vast library of other writings—some were lost to history and others survived in non-biblical contexts. How did people think about these texts before there was a Bible, before there were even books? Mroczek approaches that question with clarity and creativity, suggesting a number of productive metaphors that can guide our thinking about the Bible before there was a Bible.
Nonfiction: Blind Lit
Crooked Paths Made Straight: A Blind Teacher’s Adventure Traveling Around the World by Isabelle D. Grant
Dr. Isabelle Grant was a Scottish-born Los Angeles schoolteacher who was forced out of her job after she went blind as an adult. So of course she embarked on a trip around the world with her cane and Braille typewriter. Alone. In the 1950s. She visited five continents and many countries to observe and assess the quality of education for blind children, encouraging teachers and authorities to invest in blind youth and improve their self-sufficiency and self-determination.. Her intelligence, good humor, and openness to new ideas and relationships make for a delightful and surprising read. Foreword by Debbie Kent Stein, who found this manuscript decades after it was written and saw it through to publication.
Non-Fiction: Personal Growth & Effectiveness
Mistakes Were Made (But Not by Me): Why We Justify Foolish Beliefs, Bad Decisions, and Hurtful Acts by Carol Tavris
A master class in humility. Tavris digs deep into wrongness—why it’s inevitable, why we have trouble recognizing it, and why we avoid doing anything about it. The process is so universal and so relatable that you can’t help but begin to recognize unwarranted certainty and misplaced confidence in your own life and thinking. Everyone should take the lessons of this book to heart.
Thinking in Bets: Making Smarter Decisions When You Don’t Have All the Facts by Annie Duke
This book can help address some of those pernicious human problems described in the last entry. Duke applies her experience as an international poker champion and Ph.D. in psychology to the problem of making good decisions in an uncertain world. Excellent theoretical frameworks as well as practical tips. Let’s all work on thinking better!
French Kids Eat Everything: How Our Family Moved to France, Cured Picky Eating, Banned Snacking, and Discovered Ten Simple Rules for Raising Happy, Healthy Eaters by Karen Le Billon
A much more nuanced book than the title implies. I found it extremely helpful—not for definitive answers, but for opening up new avenues of thinking about food and food education within the family. French parents consider good eating a crucial skill to be acquired, and teach it as intentionally as reading, writing, or math. They do not consider children’s tastes to be immutable, but condition them by repeated exposure to and discussion of healthy and diverse foods. A great read for parents of young children trying to escape power struggles over food.
The Rest of the List
- The Time Quintet by Madeleine L’Engle (A Wrinkle in Time, A Wind in the Door, A Swiftly Tilting Planet, Many Waters, An Acceptable Time)
- You Lost Me: Why Young Christians are Leaving Church…and Rethinking Faith by David Kinnaman
- How to Write Short: Wordcraft for Fast Times by Roy Peter Clark
- So You Want to Talk About Race by Ijeoma Oluo
- Norse Mythology by Neil Gaiman
- How We Talk: The Inner Workings of Conversation by N. J. Enfield
- Exit West by Mohsin Hamid
- R. J. Rommel: An Assessment of His Many Contributions, edited by Nils Petter Gleditsch
- Raising White Kids: Bringing Up Children in a Racially Unjust America by Jennifer Harvey
- An African-American and LatinX History of the United States by Paul Ortiz
- Can We Talk About Race? and Other Conversations in an Era of School Resegregation by Beverly Daniel Tatum
- The Spiral Staircase: My Climb Out of Darkness by Karen Armstrong
- Rethinking Expertise by Harry M. Collins
- God and Sex: What the Bible Really Says by Michael D. Coogan
- Reality is Not What It Seems: The Journey to Quantum Gravity by Carlo Rovelli
- Cinderella Ate My Daughter: Dispatches from the Frontlines of the New Girlie-Girl Culture by Peggy Orenstein
- Girls and Sex: Navigating the Complicated New Landscape by Peggy Orenstein
- Generous Justice: How God’s Grace Makes Us Just by Timothy J Keller
- The Formation of the Jewish Canon by Timothy H. Lim
- Kluge: The Haphazard Construction of the Human Mind by Gary F. Marcus
- What is Real? The Unfinished Quest for the Meaning of Quantum Physics by Adam Becker
- The Talmud: A Biography by Barry Scott Wimpfheimer
- Insight: Why We’re Not as Self-Aware as We Think, and How Seeing Ourselves Clearly Helps Us Succeed at Work and in Life by Tasha Eurich
- People of Vision: A History of the American Council of the Blind by James Megivern
- Smartcuts: How Hackers, Innovators, and Icons Accelerate Success by Shane Snow
- The Anne Shirley Series by L. M. Montgomery (Anne of Green Gables, Anne of Avonlea, Anne of the Island, Anne of Windy Poplars, Anne’s House of Dreams, Anne of Ingleside)
- 12 Rules for Life: An Antidote to Chaos by Jordan B. Peterson
- Costly Grace: An Evangelical Minister’s Rediscovery of Faith, Hope, and Love by Rob Schenck
- What Money Can’t Buy: The Moral Limits of Markets by Michael J. Sandel
- Manhood: How to be a Better Man or Just Live with One by Terry Crews
- Where Good Ideas Come From: The Natural History of Innovation by Steven Johnson
- How the Bible Became Holy by Michael L. Satlow
- The Akata Witch Series by Nnedi Okorafor (Akata Witch and Akata Warrior)
- The Blind Doctor: The Jacob Bolotin Story by Rosalind Perman
- Finite and Infinite Games by James P. Carse
- Love and War: How Militarism Shapes Sexuality and Romance by Tom Digby
- On Liberty by John Stuart Mill
- Becoming by Michelle Obama
- Racecraft: The Soul of Inequality in American Life by Karen E. Fields
- How Fascism Works: The Politics of Us and Them by Jason Stanley
- Blinded by Sight: Seeing Race Through the Eyes of the Blind by Osagie Obasogie
What is the best book you read in 2018? Leave a comment and help me build my 2019 reading list (as if it isn’t 20 books deep already)!
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!
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.
(This is Part Two in a series. If you haven’t read Part One already, you should)
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.
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.
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.
Union Station Hotel, site of the 2018 ACB Convention
And went straight from there to Orlando for the NFB.
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!
I set a goal to read 40 books this year, and according to my Goodreads Reading Challenge, I read 59!
I am profoundly grateful to be able to read this much and this widely, considering the historical “book famine” that has plagued blind readers. Only about 10% of English books ever make it into an accessible Braille or audio format, and in most world languages that number is closer to 1%, Advances in technology (like Bookshare and the NLS) and policy (the Chaffey Amendment to U.S. copyright law an the Treaty of Marrakesh internationally) are allowing for more books to be made accessible in Braille and audio more quickly than ever before.
And so, to celebrate, I have taken a cue from my friend Emily K. Michael and decided to share my full 2017 reading list. I’ve pulled out a few that I highly recommend to everyone and added a few comments (choosing which was hard—almost everything I read this year was good!).
(grouped by subject, not quality):
The Dream of Scipio, by Iain Pears
This intricate and well-crafted historical novel traces the lives of three men who live in southern France at different times in history: a fifth-century Roman philosopher-turned-Christian-bishop, a poet in the court of the fourteenth-century Avignon papacy, and a scholar of medieval French poetry in the years leading up to World War II. The three men’s lives parallel one another as each reads and interprets the work of the one who came before.
The King Must Die, by Mary Renault
Mary Renault is a master. This historicized novelization of the myth of Theseus is infused at every turn with her deep knowledge of the ancient Mediterranean world. It perfectly balances the foreignness of the past with the universality of human experience. Historical fiction at its finest.
Life and Times of Frederick Douglass, by Frederick Douglass
I have thought of this book often since I read it. It is the third and last of Frederick Douglass’ autobiographical works, revised in 1892, three years before his death. Douglass’ life and accomplishments are, of course, astounding, and his prose is masterful. He is a model of the courage to risk everything for freedom, the passion to fight for justice and equity, and the strength to forgive even those who have harmed us most.
The only fault is Douglass’ meticulous effort to thank and acknowledge every abolitionist and freedom fighter he ever met, which results in long lists of names otherwise forgotten to history. Those aside, the writing is excellent, and this book is well worth the read.
Life’s Work: A Moral Argument for Choice, by Dr. Willie Parker
This is a must-read for all American Christians, and probably for most other Americans as well. Dr. Willie Parker is a Southern, African-American, Pentecostal Christian abortion provider—a unique perspective in a political landscape known for entrenched positions and hostility to productive discussion.
Dr. Parker argues from his life history and his Christian faith that access to safe abortions is a moral imperative in a loving and just society. It is precisely the Christian foundation for his beliefs and practice (often in the face of abuse and threats of violence) that makes this book so unusual and valuable. It defies the notion that Christianity can permit only one stance on reproductive rights, and I hope by the end readers will see that there is more to being truly pro-life than simply voting against abortion.
Evil: Inside Human Violence and Cruelty, by Roy F. Baumeister
Probably the best book I’ve read on the dark side of human nature. Baumeister’s broad synthesis of the research debunks the common simplistic notion that only unusual, intrinsically bad people (i.e., “bad apples”) can commit acts of horrific violence. He also avoids the emerging popular view that these terrible deeds are primarily the product of external, situational factors (i.e., “bad barrels,” an approach typified by Philip Zimbardo in The Lucifer Effect, below).
Instead, Baumeister presents a complex interaction between individuals and their contexts. The seeds of evil are present in every person to a greater or lesser extent, but how they manifest depends greatly on the social and cultural context.
The theoretical backbone is strong, but it is still a 20-year-old book. I would love to see an updated second edition informed by more recent research and world events.
Constructing a Language: A Usage-Based Theory of Language Acquisition, by Michael Tomasello
This is a pretty dry, technical linguistics book, but I loved it so much. Tomasello blew my mind on nearly every page as he completely reconfigured the way I think about language and human interaction. If you are interested in fundamental aspects of what language is, how it works, and how we use it, I can’t recommend this book highly enough.
The End of White Christian America, by Robert P. Jones
Important reading for pretty much everyone in the U.S. Whether the title inspires glee, fury, or anything in-between, it is difficult to deny that in the coming century the “default American” will no longer be both white and Christian. This book gives a good overview of the rise and decline of White Christian America over the course of the last century, with an insightful epilogue written after the 2016 presidential election.
Dream Hoarders: How the American Upper Middle Class is Leaving Everyone Else in the Dust, Why That is a Problem, and What to Do About It, by Richard V. Reeves
Phenomenal book. Richard Reeves of the Brookings Institute shows that rising income inequality cannot be blamed on the wealthiest 1% alone. The entire top 20% of the American income distribution have done their best to elevate their position and then “pull up the ladder” behind them. Laws governing taxes, housing, education, and inheritance have all been shaped to protect the upper middle class and their children from downward mobility, and have stifled upward mobility in the process. As the top 20% pulls further and further ahead of the rest, the meritocratic American ideal becomes less and less a reality. I was convinced, convicted, and inspired to reanalyze my policy views and voting choices.
Designing Your Life: Build a Lifethat Works for You, by Bill Burnett andDave Evans
This superb book applies design thinking to life choices, demystifying some of the most perplexing aspects of wayfinding in life and career in the process. I plan to reread this and work through the exercises in detail, probably multiple times throughout my life.
Essentialism: The Disciplined Pursuit of Less, by Greg McKeown
A strong argument for ruthless focus. If you, like me, have the tendency to make “a millimeter of progress in a million directions,” this book might help you reframe and refocus on the few essential things.
Deep Work: Rules for Focused Success in a Distracted World, by Cal Newport
A practical guidebook for developing practices, habits, and schedules that foster deep focus and productivity. Great framework for getting things done!
The Rest of the List
(in the order I read them):
- Book of Ages: The Life and Opinions of Jane Franklin, by Jill Lepore
- Against Empathy: The Case for Rational Compassion, by Paul Bloom
- Messy: The Power of Disorder to Transform our Lives, by Tim Harford
- Empirical Models Challenging Biblical Criticism, edited by Raymond F. Person and Robert Rezetko
- America’s Original Sin: Racism, White Privilege, and the Bridge to a New America, by Jim Wallace
- Little Book of Restorative Justice, by Howard Zehr
- Strangers in their Own Land: Anger and Mourning on the American Right, by Arlie Russell Hochschild
- The Catcher in the Rye, by J. D. Salinger
- Why Wall Street Matters, by William D. Cohan
- Crashing Through: A True Story of Risk, Adventure, and the Man who Dared to See, by Robert Kurson
- The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, by Norman Doidge
- Intelligence in the Flesh: Why Your Mind Needs Your Body Much More than it Thinks, by Guy Claxton
- On Bullshit, by Harry G. Frankfurt
- The Shadow Series by Orson Scott Card (Ender’s Shadow, Shadow of the Hegemon, Shadow Puppets, and Shadow of the Giant)
- Teacher Man, by Frank McCourt
- The Handmaid’s Tale, by Margaret Atwood
- Dreamblood Series by N. K. Jemisin (The Killing Moon and The Shadowed Sun)
- The Underground Railroad, by Colson Whitehead
- Everybody Lies: Big Data, New Data, and What the Internet can tell us about Who we Really Are, by Seth Stephens Davidowitz
- The Sellout, by Paul Beatty
- Evicted: Poverty and Profit in the American City, by Matthew Desmond
- The Babylonian World, edited by Gwendolyn Leick
- The Sum of Small Things: A Theory of the Aspirational Class, by Elizabeth Currid-Halkett
- The Egypt Game, by Zilpha Keatley Snyder
- What Technology Wants, by Kevin Kelly
- When Breath Becomes Air, by Paul Kalanithi
- Small Great Things, by Jodi Picoult
- The Language Hoax: Why the World Looks the Same in Any Language, by John McWhorter
- The Song of Achilles, by Madeleine Miller
- Ready Player One, by Ernest Cline
- The Giver Series by Lois Lowry (The Giver, Gathering Blue, Messenger, and Son)
- Engines of Liberty: The Power of Citizen Activists to Make Constitutional Law, by David Cole
- The War of Art: Break Through the Blocks & Win Your Inner Creative Battles, by Steven Pressfield
- The Lucifer Effect: Understanding How Good People Turn Evil, by Philip Zimbardo
- The Articulate Mammal: An Introduction to Psycholinguistics, by Jean Aitchison
- The “Lotus Sutra”: A Biography, by Donald S. Lopez, Jr.
- The Book of Mormon: A Biography, by Paul C. Gutjahr
- Nefertiti, by Michelle Moran
- The Reign of Nabonidus, by Paul Alain Beaulieu
- The Time Keeper, by Mitch Albom
- Journal of a Novel: The East of Eden Letters, by John Steinbeck
What is the best book you read in 2017? Leave a comment and help me build my 2018 list!