2019: My Year in Books

A grid of covers from some of the books I read in 2019

In the rush to finish my dissertation, I was sad to miss writing my annual book review post (see 2017 and 2018), so I’m just going to do it now…in May.

This year I read 37 books. Nowhere near the high mark of 67 books from last year; I didn’t even get to my goal of 40 books. But that’s ok, because the trade-off was, you know, finishing my dissertation.

 So here, without further delay, is my reading list from 2019. As usual, some favorites are called out on top, and the rest are listed below in the order I read them.

Top Picks

Fiction

Octavia E. Butler. Yes, yes, I know Octavia Butler is not a book, but I discovered her last year and read three of her novels and one short story collection. If you haven’t read anything of hers, you should. From Kindred, the story of a woman who has to literally navigate the brutal injustices of her family tree as she jumps back and forth in time, to Earthseed a prescient series set in a near-future America troubled by climate change, unchecked corporatization, designer drugs, and theocratic power-grabs, Butler’s writing perceptively explores many of the disturbing undercurrents that plague American society and culture and brings them to life in gripping narrative.

Non-Fiction

Reign of Error: The Hoax of the Privatization Movement and the Danger to America’s Public Schools by Diane Ravitch

This book on education policy came out in 2012, so some of the information is a bit dated. Nevertheless, its core message is still alarmingly relevant. Movements toward school privatization have continued in force since the book was written, and are only intensifying during the Coronavirus pandemic. Reign of Error gives important background and useful, data-backed arguments against privatization and charter and voucher school programs. Once an advocate for charter schools herself, Ravitch became disillusioned by their consistent failure to deliver on their grandiose promises and now offers clear and convincing arguments for revitalization and reinvestment in public education.

I first heard Diane Ravitch speak on the Pitchfork Economics podcast, She and host Nick Hanauer discussed their former advocacy for school privatization and the process by which their views changed. It is rare to witness people who have, by evidence and experience, become disillusioned with positions for which they have advocated strongly and systems which benefit them personally. I was impressed by the intellectual honesty and personal integrity they showed as they adjusted their beliefs, acknowledged their error, and worked to make amends. 

Atlas of Moral Psychology, edited by Kurt Gray

This colossal edited volume presents a current state-of-the-field survey of moral psychology. Unlike the field of ethics, moral psychology does not attempt to ascertain what is actually right and wrong; instead, it attempts to identify the psychological and socio-cultural processes by which humans decide what is right or wrong, and how to act and react morally in specific circumstances. It is a new and messy field, but it already offers valuable insights into many foibles of human morality, from the ethical systems we create down to the inconsistency with which we embody them. I was especially happy to see that this volume made a strong effort to include investigations across class, gender, and culture, the lack of which has historically been a weakness of psychological research. 

The Color of Compromise: The Truth about the American Church’s Complicity in Racism by Jemar Tisby

Tisby presents an excellent historical survey of the shortcomings of the American church as it relates to issues of race. Even when white Christians were not explicitly championing racist views or defending the institutions of slavery and segregation, their advocacy for equal rights and protections under the law were muted and weak. Few and far between were those who gave full-throated support to the liberation of Black, Asian, and Hispanic people, here or abroad. This book focuses only on the Christian church’s role in the history of racism in America, and may work best as a supplement to Ibram X. Kendi’s Stamped from the Beginning and/or Paul Ortiz’s An African American and LatinX History of the United States.

The Whole List

  • Discovering Second Temple Literature: The Scriptures and Stories that Shaped Early Judaism by Malka Z. Simkovich.
  • Children of Blood and Bone (Legacy of Orisha #1) by Tomi Adeyemi
  • Women, Race, and Class by Angela Y. Davis
  • The Righteous Mind: Why Good People are Divided by Politics and Religion by Jonathan Haidt
  • The Color of Compromise: The Truth about the American Church’s Complicity in Racism by Jemar Tisby
  • A Brief History of Everyone who Ever Lived: The Stories in our Genes by Adam Rutherford
  • The New Cambridge History of the Bible: Volume 1. From the Beginnings to 600 edited by James Carleton Paget
  • Surprised by God: How I Learned to Stop Worrying and Love Religion by Rabbi Danya Ruttenberg
  • This Abled Body: Rethinking Disabilities in Biblical Studies edited by Hector Avalos
  • The Rise and Fall of the Bible: The Unexpected History of an Accidental Book by Timothy Beal
  • The United States of Paranoia: A Conspiracy Theory by Jesse Walker
  • Sex, Mom, and God: How the Bible’s Strange Take on Sex Led to Crazy Politics and How I learned to Love Women (and Jesus) Anyway by Frank Schaeffer
  • The Eyre Affair (Thursday Next, #1) by Jasper Fforde
  • Atlas of Moral Psychology edited by Kurt Gray
  • A Disability History of the United States by Kim E. Nielsen
  • Late Bloomers: The Power of Patience in a World Obsessed with Early Achievement by Rich Karlgaard
  • The 48 Laws of Power by Robert Green
  • Beyond Orality: Biblical Poetry on Its Own Terms by Jacqueline Vayntrub
  • The Emily Series by L. M. Montgomery (Emily of New Moon, Emily Climbs, and Emily’s Quest)
  • Kindred by Octavia E. Butler
  • Blood Child and Other Stories by Octavia E Butler
  • Parable of the Sower (Earthseed, #1) by Octavia E. Butler
  • Parable of the Talents (Earthseed, #2) by Octavia E. Butler
  • The Big Disruption by Jessica Powell
  • Dying of Whiteness: How the Politics of Racial Resentment is Killing America’s Heartland by Jonathan Metzl
  • Reign of Error: The Hoax of the Privatization Movement and the Danger to America’s Public Schools by Diane Ravitch
  • What Really Happened in the Garden of Eden? by Ziony Zevit
  • Moses Among the Idols: Mediators of the Divine in the Ancient Near East by Amy L. Balogh
  • Just Mercy: A Story of Justice and Redemption by Bryan Stevenson
  • White Fragility: Why it’s So Hard for White People to Talk about Racism by Robin D’Angelo
  • A Short History of Iraq by Thabit Abdullah
  • Divine Bodies: Resurrecting Perfection in the New Testament and Early Christianity by Candida R. Moss
  • Biblical Corpora: Representations of Disability in Hebrew Biblical Literature by Rebecca Raphael
  • The Myth of Persecution: How Early Christians Invented a Story of Martyrdom by Candida R. Moss
  • The Seven Necessary Sins for Women and Girls by Mona Eltahawy

Update: Finishing Up and Starting Anew

Partial page from a medieval Hebrew manuscript of the Psalms. The main text is interrupted by an enlarged and stylized

Well, it’s been a long time since I last posted. I guess some years you blog a lot and other years you have an infant, finish a dissertation, and graduate with a PhD in the middle of a global pandemic. Every year is different!

Here’s an update to bring everyone up to speed:

At this time last year, I was finalizing the first few chapters of my dissertation so I could send them to my committee for review.  I had been working on the underlying research for a couple of years already, but the strands didn’t come together into something coherent and submittable until last May. From there, it was less than a year before I sent a complete draft—397 pages of glorious, heavily footnoted nerdery—to my advisors. The date was March 8, and my defense was set for the 20th.

It had been planned out for months. We had conscripted my parents to fly out from Colorado. They would watch the girls, while Kristin and I went back to Boston for the defense, some celebration, and our first trip away without children in more than five years.

But alas, dear reader, it was not to be.

On March 10th my department sent a note that defenses were likely to be virtualized, and to await further guidance. It was still very early in COVID times, and it was the first hint we got that life would start to be affected in the United States. Kristin’s job had recently made work-from-home mandatory, and some of her coworkers in China had not left their apartments in weeks already, but it was still largely business as usual over here.

Needless to say, things did not get better over the next ten days, and so I found myself sitting at my computer before sunrise on the morning of the 20th, defending my dissertation to a committee with members spanning two continents and nine time zones. The circumstances were surreal, but the experience itself was supportive and encouraging. My dissertation passed with enthusiastic support, requiring only a good proofreading and some  formatting corrections before submission.

Now it is done. The final version has been deposited for posterity, my email signature has been appended with the three fateful letters P, h, and D, and…

And, well, I sure picked a doozie of a year to graduate.

As I’m sure several (hundred) emails inform you every day, these are uncertain times—unprecedented times, even! This is very much the case in higher education, as universities have closed down for the semester and are now weighing when, how, and in some cases whether to reopen. Many universities have announced full or partial hiring freezes for the upcoming academic year, and in all likelihood the job market will be especially slim for years. 

So a lot of things are up in the air these days. School is canceled for the kids and we are operating without child care. I’m taking on full-time lead parent duties, though Kristin is taking the lead on their crisis schooling since most of the materials are inaccessible. In the gaps, naps, and evenings I’ll keep on keeping on—writing articles, revising the dissertation, and perhaps even posting around here some more. 

I’m glad to have you along for the ride! Let me know how you’re doing in the comments!

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

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.

Who was Mrs. Harry A. Cole of Cleveland? A Tale of Academic Sleuthing and Recovering the Name of a Braille Pioneer

For the past two days, I’ve been on the hunt for a name. I’ve been looking for it for months, actually, but this week I got serious. I’m writing an encyclopedia article on the history and development of Hebrew Braille and I want to make sure to credit the women who made important contributions, as well as the men.

So I have been frustrated that the woman who transcribed all twenty volumes of the first Braille Tanakh (=Hebrew Bible) is identified ever and only as “a Mrs. Harry A. Cole of Cleveland.” I wanted to credit her by her own name, but this is how she was referenced in every written source I could find. I read the preface to the Braille Tanakh, newspaper articles about its publication, even bulletins from her congregation at the Euclid Avenue Temple in Cleveland. But everywhere she was simply “Mrs. Harry A. Cole of Cleveland.” I even called the temple, and while they could confirm that she had been a member and was now deceased, they had no record of her first name.

This morning, I called the headquarters of JBI International (formerly the Jewish Braille Institute), the organization that had commissioned the development of the International Hebrew Braille Code and the publication of the first Braille Tanakh. I wasn’t sure how far I’d get. They might have nothing, or I might have to wait for Beth, the Director of Development, to search through piles of dusty correspondence in JBI’s archives, but I didn’t even get halfway through my question before she had an answer:

“I’m curious about the woman who transcribed the Braille Tanakh—“

“Oh, Belle Cole?”

And there it was. Belle Cole.

The name sprang so easily to her mind—how had I not found it?

Quite reasonably, as it turned out. Belle Cole’s given name was never used in print materials, but it appears in a hand-written note that sits on display at JBI headquarters. In 1950, Leopold Dubov, JBI founder and chair of the committee that designed the International Hebrew Braille Code, gifted a first edition of the Braille Tanakh to Mrs. Cole, with the following inscription on the flyleaf:

“Presented gratefully and inscribed to Belle Cole, the First Lady of Hebrew Braille Land, to whom, thousands of years after the giving of the Torah on Mount Sinai, was given the priceless privilege of translating the full Hebrew text of our ancient Holy Bible into the miracle script known as Braille. Surely, a unique and heaven-blessed ‘mitzvah,’ an achievement of matchless worth and enduring significance.”

Several years ago, her family returned the Tanakh to JBI for preservation, and this page sits displayed under glass in their collection, in the same building where Beth works. She offered to walk over and take a picture for me:

A photo of the inscription by Leopold Dubov to Belle Cole. Photo by Beth Rudich of JBI

I have since found further verification in a congratulatory notice in a bulletin from the Euclid Avenue Temple. The main text of the notice still refers to her as Mrs. Harry A. Cole, but it quotes the text of Dubov’s inscription, in which her given first name appears. This bulletin hadn’t turned up in searches because the process of scanning had mangled the text. It had elided the s and Google had indexed it as “Mr Harry A. Cole.” Quite a step in the wrong direction, but when I searched by her first name, it turned right up.

It is important to remember all of those who worked to bring Braille to Hebrew speakers, and sacred texts to the blind, especially those whose names are in danger of being lost to history. My sleuthing was a testament to the power of high-tech tools and to the necessity of good old-fashioned low-tech methods. I am glad I found the name of Belle Cole, and I will be happy to recognize her in print, by her own name, for the first time since her “unique and heaven-blessed ‘mitzvah’” was completed.

My Year in Books: 2018!

Picture: A collage composed of the covers of many books i read in 2018

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.

Top Picks

Fiction

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. 

Non-Fiction: Bible

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)!

White Cane Awareness Day!

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

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

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

Photo Credit: Volker Corell

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

And maybe then, better can mean better for everyone.

Dark Side of the Cure, Part Two: Mixed Messages

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

They deny jobs when the skills are sufficient.

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

They deny the blind full inclusion and integration into society.

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

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

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

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!