Blindness

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

Posted on by Eric Harvey

A photo of a lunare eclipse, including the dark side of the moon. See what I did there?

This is an exciting time in medical research. It seems like every time I turn around, a new headline heralds the imminent end of blindness. Stem cells, gene therapies, artificial retinas—with all the broad promise and breathtaking progress, surely there will soon be something to give blind people hope!

It’s an exciting time, all right, but I’m getting less and less excited about it.

I used to track everything, from active clinical trials all the way down to promising experiments on rats and mice. Recently, though, I’ve been losing track of what trial is in which phase, which ones are progressing and which are abandoned.

I’ve found myself, in general, less interested in a cure. And not just less interested—sometimes I feel outright squeamish about it.

Why? A cure for blindness seems like a cause without a downside. So much unnecessary pain and hardship could be prevented! Why wouldn’t I be interested?

Well, dear reader, keep going and I’ll tell you. This post is the first in a series, in which I discuss a number of my reservations about the prospect of a cure. The series isn’t meant to be balanced or give a full picture of my views; instead, I aim only to bring up a few points that are almost always left out of the conversation. The first post is personal, the middle two are societal, and the fourth gets almost philosophical.

***

Here is the personal: I no longer hope for a cure.

Don’t get me wrong. I’m not in despair. I haven’t gotten jaded because they always say the cure is “five years away,” just like they’ve said for the last fifteen or twenty years. What’s happened is, I’ve stopped placing my hope in the prospect of a cure at all, because there is plenty of hope in a life of blindness.

Hope is a slippery word. It always points to a brighter tomorrow, but beyond that it can mean a lot of things. There are different kinds of hope, different ways of imagining that brighter tomorrow and how it will get here.

There is a kind of hope that sits and waits and watches. It is a hope that sees help on the horizon, coming from outside at a time unknown to swoop in and make things better.

This is the hope for a cure.

But this is hope without control, and hope without agency.

I cannot control the pace of discovery, testing, or development. I can only watch and wait. And while I watch and wait, life will pass me by. Tracking the progress of research in expectation of a cure takes time and energy, and places my focus on something I can’t control. It distracts me from the life I am living now.

But there is another kind of hope: an active and engaged kind of hope, a hope that buckles down, digs in, and gets to work. A hope that says “with effort and determination I can get from where I am now to where I want to be.”

This kind of hope is described by psychologist C. R. Snyder as a cognitive process with three parts: goals, pathways, and agency.* This kind of hope defines a desirable end, plots a viable course to that end, and works hard to get there. This kind of hope finds new ways when the path is blocked, and continues to strive when the road is uncertain.

In case you hadn’t guessed, this is the kind of hope I prefer, and it has nothing to do with a cure. It is not hope that someone or something will swoop in and rescue me from my wretched existence, but the hope that I can make tomorrow a little better than today by my own careful planning and diligent effort.

It is hope that says life with out sight is not a tragedy.

I have come to see that life can be lived, and lived well, while blind. Those times before, when I would take a deep dive into research on retinal regeneration, came almost inevitably after I realized I could no longer do something the same way I used to, when I could see a bit better. What was I going to do? How could I keep on moving forward?

And yet, move forward I did, because the alternative was to fixate on the past, the things I had lost, and long for a solution that was out of reach and out of my control.

So I have chosen the second kind of hope, and I have chosen to focus my attention and energies on setting goals, finding ways to reach them, and putting in the work to get there.

And this has led, at least in part, to my squeamishness about a cure. It strikes in conversations, when someone mentions an article they saw, or a bit on the nightly news, and they express their joy at the hope this will bring to blind people. The hope that someday soon, my sight will be restored.

And I realize, with a sinking knot in my stomach, that the restoration of my sight is more important to them than it is to me.

Sure, it shows that they care. It shows that they want the best for me. But it also shows that they don’t know what is best for me. They talk as though blindness made life an inescapable misery and a cure were the only thing that could offer a life full of meaning and joy.

But I do not place my hope on a cure, and there are many, many like me—blind people who do not see blindness as an insurmountable obstacle. It is an inconvenience, a challenge, a target for prejudice and discrimination, but it can no more kill our hope for a good life than any other feature of our bodies or personalities.

There is already plenty of hope for blind people, with or without a cure.

* C. R. Snyder. The Psychology of Hope: You Can Get There From Here. Free Press, 1994.

Summer Doings and Things to Come

Posted on by Eric Harvey

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

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

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

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

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

Union Station Hotel, site of the 2018 ACB Convention

And went straight from there to Orlando for the NFB.

A photo of the entire 2018 NFB Scholarship Class.

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

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

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

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

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

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

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

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

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

2017: My Year in Books

Posted on by Eric Harvey

An image collage of book covers for all the books I read this year.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!).

Top Picks

(grouped by subject, not quality):

Fiction

 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.

Non-Fiction

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.

Personal Development

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!

A Question for the Physicists

Posted on by Eric Harvey

I rarely watch what I’m doing when I pour coffee these days. Same goes for filling a glass of water, or a cup of milk for my daughter. And surprisingly, it doesn’t end in disaster very often. Why not? Because I’m listening. 

As I fill the container with liquid, the sound it makes gets higher and higher. At some point, I get the feeling it’s high enough, and I stop. Most of the time, the liquid is just about 3/4–1” from the top of the container. I’m surprised at how consistent it is, and how seldom I get coffee on my hands or on the floor.

So here’s my question: what am I using to gauge this process? I can’t just be listening for a specific pitch, since a coffee cup and a water bottle resonate at very different frequencies. There must be a metric that holds steady across containers of all shapes, sizes, and materials, and across methods and rates of filling.

Help me out, physicists! What is it? Rate of change? Difference in rate of change? Some ratio between beginning and ending frequency? I must know!

Pride and the Fear of Prejudice: Reflections on Picking Up a White Cane

Posted on by Eric Harvey

A photo of Eric sitting at a table, balancing his white cane on one finger.

“I need to get used to people staring,” said my wife, Kristin, as we walked up a busy sidewalk one evening, passing small clusters of shoppers and bar-hoppers.

“Oh, are they staring?” On some level, I know people do—I’ve thought about it a lot, in fact—but I don’t usually notice when it’s happening. 

We walked on for a moment, passing a few more chattering groups. “It’s pretty rude, actually.” A little more edge in her voice this time—a hint of anger and offense on my behalf. 

It wasn’t the first time I’d had my white cane out while we were walking together, but it hadn’t yet become normal and run-of-the-mill. It still hasn’t, really. I don’t need the cane in my own house, or my own neighborhood where I’m comfortable, but in unfamiliar surroundings, or at night, or in crowds, I can no longer get along without it. 

So I have started using the cane. I resisted it for a long time—I carried it with me for a year before I took it out in public. When I use it, the benefits are real. I am calmer. I don’t feel the constant fear that I might trip over a curb or run into a bench or a sign or an unsuspecting pedestrian. I hadn’t realized how tense I could get walking until my cane let me relax. 

Why did I resist for so long? It wasn’t the stares, per se, because I don’t notice the stares. I do notice other things. I notice people get out of my way. I hear children comment, or maybe just their parent saying “because he can’t see, honey—keep walking,” in a loud, embarrassed whisper. Sometimes, people are nicer to me. When I run into people, they apologize to me. People offer directions and guidance when I’m walking.  Panhandlers don’t see me as a mark, so they say hello and have a nice day and we each go on our way.

These are minor things, perhaps. On their own they would be annoying, tiresome, occasionally disheartening, but they are not on their own. They are just a few symptoms of a deeper and harder truth. When I carry my white cane, people see me differently. That thin metal stick blocks everything else from view and becomes the controlling factor in my first impression.

Suddenly, I am not just a man.

I am a blind man. 

And that, my friends, is a hard move to make. I spent most of my life actively trying to avoid being labeled for my vision, and for the most part I succeeded. My eyesight has always been poor, but it hasn’t defined me. People have gotten to know me first, and my visual impairment after. In a few cases, I knew someone for years before they learned I had low vision. It’s not that I tried to protect the secret that fiercely. I never outright denied it, but if a situation never arose where I had to admit it, I didn’t feel obliged to. It cannot be hard to imagine why I would rankle at the thought that my visual impairment, that thing I had sought to hide for so many years, would now become the first thing any new acquaintance would learn about me.

Looking back, it’s easy to interpret my reticence as vanity and empty pride. It’s easy to say I was foolish to avoid a useful and necessary tool just to maintain appearances. 

But I’m not alone. Many people with progressive vision loss wait way too long to start using their canes. My first Braille teacher would lament the stubbornness of her students at length: they wait too long to give up driving, they wait too long to learn Braille, they wait too long to start using their canes.

She once told me of a man who insisted he did not need a cane full-time. He was perfectly safe walking without it. After all, he had only been hit by two cars.

So before you chalk my resistance to the cane up to ego or foolish pride, consider how many others also resist. Consider how strongly they resist. And consider the factors that lead them to resist. They are not illegitimate.

***

Seventy percent of blind people are unemployed. The reasons for this—the historical degradation of the blind, the problems of education and accessibility, and so on—could fill volumes, but none of them is absolute. None is immutable. With some adaptation and accommodation, most blind people are fully capable of earning their pay the same way any other person does.

This unemployment rate is not the necessary result of blindness; it is driven in large part by social perception of the blind. A recent study from Johns Hopkins University showed that Americans fear blindness more than any other malady: more than losing their other senses, their limbs, even their memories and their minds. Sighted people fear blindness, and they project that fear onto the blind. The victims of their greatest fear become the objects of their greatest pity.

And pity is not an emotion that expects great things. Pity patronizes. Pity belittles. Pity excuses. It does not inspire faith, or trust, or get you a job.

***

Dr. Sheri Wells-Jensen, a professor at Bowling Green State University who is blind, created a short video illustrating the difficulties that blind people have in job interviews. The interviewers are not antagonistic, but their view of blindness has been conditioned by naive assumptions about the difficulty of being blind and their participation in a blindfolded simulation. Throughout the interview, they ask the blind interviewee simplistic and demeaning questions that betray their rock-bottom expectations for her performance.

“Did you type this? Oh my gosh, how? I don’t see a single typo or anything!!”

“When you teach, how do you know where the students are?” 

“I’m happy to walk you to your car. Do you need help getting down the stairs?”

They dismiss her legitimate achievements—an earned Ph.D., independent research, and ten years of teaching experience—and focus instead on her “impressive” ability to perform the simplest tasks. By the end, it is clear she was not interviewed as a candidate, but as a novelty. 

In an online discussion of the video, a blind graduate student asked if this was really the experience she could look forward to when she entered the job market. Dr. Wells-Jensen replied that interviewing wasn’t quite this bad—she had heard all of these things in one interview or another, but she had never heard them all in the same interview. Small consolation, for those of us with our careers ahead, but it is the reality we must face.

***

Jobs and opportunities are not earned. They are not simply conferred based on met requirements of ability and achievement. Jobs are given. They are given by people, based on those people’s perceptions of the candidates. 

Like it or not, the perceptions of others have a profound impact on our lives, and all of us—whether we acknowledge it or not—go to great lengths to manage and influence those perceptions.

I lived the first thirty-four years of my life with the ability to control how others perceived me. There was no part of my appearance or manner that instantly and inevitably lowered my estimation in the eyes of those I met. When I picked up the white cane, I took up the mantle of blindness, and the prejudice that comes with it. I could put that mantle down again, just by putting away the white cane. It was a symbol, the sign of my blindness, and while I could hide it, I did.

Increasingly, signs of blindness are always with me, in my body and my behavior. I’ve failed to recognize too many faces, missed too many offered handshakes, run into too many obstacles to think I can hide it now. The social benefits of keeping my cane zipped up in my bag have faded as the practical benefits of using it have grown. I am blind whether I carry it or not, and now I am seen as blind.

***

The main lesson here is not about white canes. I’m not just telling people to stop worrying and learn to love the cane. Everyone who loses their sight has to weigh the benefits of the cane against its costs, and decide for themselves when to use it (or when to get a guide dog!).

No, the lesson I’ve learned is about my fear. It was not baseless, and the thing I was afraid of is real, even if I couldn’t articulate it in the beginning. Social perception has deep and long-lasting repercussions in the real lives of blind people and it drives many of us who are going blind to resist tools that could help us in practical ways. Being hit by a car is a problem; so is unemployment.

But this is hard to see from the outside, and harder to truly appreciate. Even my Braille teacher, who worked closely with the blind and the going-blind, could not see the reasons why her students didn’t use their canes as early as they should have.

In this way, it is also a reminder to trust stories of prejudice and discrimination from others. My own white cane is an object I can pick up and put down, but many people are born with “white canes” in their bodies, characteristics they cannot hide that set them apart and mark them out from the rest of the population: sex, skin color, disability, and deformity. Others have “white canes” like sexuality or religion, things they could hide with effort, but at a deep cost to their identity or well-being. All of these create barriers based on social perceptions, not any real deficit.

***

The problem of prejudice can be attacked from two directions. The one I tried for most of my life focused on me—managing my appearance to avoid showing any disability or defect. That way is now closed to me, as it is and has always been closed to so many others who face prejudice and discrimination every day of their lives.

The other approach is to change the perceptions themselves, to move past the fear of being labeled and judged, and do what small part I can to show the world that naive, patronizing condescension of blind people is unwarranted and wrong. I still have to focus on myself, to develop my skills and abilities, but I must also engage actively with those who rarely come into contact with the world of the blind, to demonstrate what blind people can do, what they have already done, and to urge them to trust in the abilities of the blind.

This, I believe, is the better path, and it always has been. By working as a blind person to improve the lot of blind people, I serve not only myself, but the wellbeing of other blind people and of society at large. As you can see, however, I was not drawn to it by any special virtue of my own. It became my only option when the path of self-presentation closed. I was driven to advocacy by self-interest, but the process has taught me that it is always better and always necessary to advocate for the equal treatment and welfare of others, whether or not their trouble is also mine.

***

Luckily, advocacy for the blind has come a long way, in the hands of better and more qualified people than myself. Many pioneers have come before or are working now to improve the circumstances of the blind. Blind people want to support themselves, and to contribute to their families, their communities, and their society. They are advocating for themselves to be given that opportunity, and developing the tools they need to capitalize on it.

Since I have gone blind, I have met a host of bright and capable blind people working in almost every field: academics, scientists, engineers, coders, designers, filmmakers, woodworkers, tinkerers, lawyers, politicians, public servants.

More than ever before, blind professionals have set precedents that blind children and newly-blind adults can follow into almost any career or vocation. If blind people continue to receive educational and professional resources, we will grow our numbers in every sector of work and life. Blind people in the workplace will become less of a rarity. Someday, the intelligence and competence of the blind will be seen everywhere.

And when something is seen everywhere, there is no more reason to stare. 

 

The Speed of Sound

Posted on by Eric Harvey

Image representing the sound wave of an audio file.

On the recommendation of blog reader Margaret, I’ve been reading through Norman Doidge’s book, The Brain that Changes Itself. The book investigates neuroplasticity, the process by which the brain rewires itself and changes its physical structure in response to specific demands. There are a lot of interesting insights in there for people with sensory loss, and I’m already planning to write a longer post about it once I finish. 

In the meantime, I just wanted to share a short passage that caught my attention, and a few thoughts about it. Doidge writes:

I was at a dinner party with a friend, whom I shall call Emma; her writer husband, Theodore; and several other writers.

Emma is now in her forties. When she was twenty-three, a spontaneous genetic mutation led to an illness called retinitis pigmentosa that caused her retinal cells to die. Five years ago she became totally blind and began using a seeing-eye dog, Matty, a Labrador. Emma’s blindness has reorganized her brain and her life. A number of us who were at the dinner are interested in literature, but since she has gone blind, Emma has done more reading than any of us. A computer program from Kurzweil Educational Systems reads books aloud to her in a monotone that pauses for commas, stops for periods, and rises in pitch for questions. This computer voice is so rapid, I cannot make out a single word. But Emma has gradually learned to listen at a faster and faster pace, so she is now reading at about 340 words a minute and is marching through all the great classics. “I get into an author, and I read everything he has ever written, and then I move on to another.” She has read Dostoyevsky (her favorite), Gogol, Tolstoy, Turgenev, Dickens, Chesterton, Balzac, Hugo, Zola, Flaubert, Proust, Stendhal, and many others. Recently she read three Trollope novels in one day. She asked me how it might be possible for her to read so much more quickly than before she went blind. I theorized that her massive visual cortex, no longer processing sight, had been taken over for auditory processing.

Naturally this caught my eye, since I have RP and—like Emma—have taken to consuming most of my books in audible form. I too have increased the speed incrementally, and now listen at between 400 and 450 words per minute.

Anyone who has heard blind people use their phones knows this is pretty common. The advent of smartphone technology in the decade since this book came out has improved text-to-speech synthesis by leaps and bounds over the old Kurzweil machines. It is cheaper and more widely available, and the voices are more pleasant and natural-sounding, clearer and easier to understand at higher speeds.

Now that I’m used to it, I actually love using my phone to listen to books. For one thing, the high rate of speed keeps me engaged and focused. I know exactly how long it will take to read a book, because my reading app tells me, down to the second. And It makes note-taking easy—I just pause, highlight the text I want, and export all of my highlights once I’m done with the book. 

But there’s good news for those of you whose eyes still rule your brains: this is not some kind of blind superpower, and you can learn it too. I know, because my wife Kristin does it, and her vision is completely intact. She found herself getting impatient with the pace of audiobooks and podcasts and, since she knew I listened fast, she started increasing the speed. Now she listens to everything sped up anywhere from 1.5x to 2x normal speed, depending on what it is and what else she is doing at the time.

You can always learn new skills, even if large tracts of your cortical real estate haven’t been recently vacated. Much of the rest of Doidge’s book discusses how regions of the brain can be recruited for novel tasks, at the same time as they continue to do their old jobs. So it seems hiss explanation here is overly simplistic. Blindness had certainly prompted changes in Emma’s brain, but some—like fast-listening—could have happened even if she was sighted.

Brain function is not a zero-sum game, where gains in one domain can only happen at the expense of another. We haven’t found—or even gotten close to— the limits of the human potential to learn. We don’t know how many skills a person can master, or to what depth. The brain is glorious in its flexibility and ability to change, at any age and in any circumstances..

I’m excited to share more from this book and a few others I’ve read recently in the same vein, they all tend to show the benefits of that hard work I wrote about last week. The grueling work of learning to live again without sight not only allows us to lead happy and fulfilling lives. but could protect the health and longevity of our very brains.

Stay tuned!

The Hardest Part

Posted on by Eric Harvey

There’s a saying among people with Retinitis Pigmentosa: “Being blind isn’t hard. Going blind is hard.” I’m not sure that being blind is easy, exactly, but I do believe that this season, the transition between sight and blindness, will probably be one of the hardest of my life.

Part of this is the basic sense of loss, and loss of control. Something I once had is disappearing, and there is nothing I can do to stop it. I don’t know—can’t know—what I will be able to see next year this time, or five years down the line. It’s hard to literally watch my vision spark and fizzle away. 

But that sense of loss isn’t really the hardest part. The hardest part is just how much work it is to go blind. Because I’m not just losing my sight; I’m losing all of my habits, routines, and processes that rely on it. 

Every time I use my eyes to locate something, track something, or assess something, to organize or to remind myself of something. Every task that relies on even the tiniest bit of visual information-gathering. All of them have to be reconsidered and relearned.

Because of course there are different ways to do most of these things. I can replace my lost abilities, can replace the visual information with information from my other senses or my pieces of assistive technology. But it means changing the way I’m accustomed to doing almost everything I do.

It means adaptation, and adaptation is hard.

Learning—at every turn, in every part of life, every day—is exhausting.

And demoralizing. All of these things I’m learning? They are things you’re supposed to learn as a child, not in your thirties. Actually, they’re things I did learn as a child. I learned them at two months, when I smiled back at faces that smiled at me, at three months when I grabbed a toy and shook it for the first time. I learned them  when I sat up, crawled, took my first steps. When I learned to read the menus on our first computer, and went from there to reading chapter books, novels, and a list of languages stretching back to the dawn of history.

I learned them over the course of a lifetime, one skill building on another. Skills so basic and so foundational we barely think of them as skills at all. Skills that need to be mastered to the point of effortlessness so we can focus our energy and attention on the next, greater height. Now much of that knowledge and skill is becoming useless. 

Many days, I feel like I’m spending all of my energy digging myself out of a hole, or bailing out a leaky boat. Like I’m running as hard as I can just to get to the starting line—never mind the finish line. 

I miss the feeling of progress, the feeling that the work I’m doing is moving me forward, instead of just keeping me from falling behind, or falling apart. 

And when will it end? RP is a long and slow disease. I’ll be living in this process for years, for decades even, weaning myself off of vision in bits and pieces, one task, one process at a time.

It will be hard, grueling at times, but the alternative would be much, much worse. Refusing to face the difficulty head-on and avoiding the hard work would lead somewhere worse than daily exhaustion. It would lead to stagnation and despair, and that’s something I refuse to tolerate.

So I’ll keep working, facing the days when simple tasks become suddenly arduous and stressful, finding new ways to do them, and then not giving up until they are mastered again. And hopefully, with each new adaptation and each new skill, it will get a little easier, until someday I reach that place where I can say “Going blind was hard, but being blind isn’t.”

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

Posted on by Eric Harvey

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

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

Research Funding

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

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

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

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

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

Educational Resources

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

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

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

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

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

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

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

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

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

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

Other Cuts

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

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

***

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

My Braille Toolbox: A Guided Trip through Braille-Writing History

Posted on by Eric Harvey

A close up image of the VarioUltra 20 from the front.

My new Bluetooth Braille display finally arrived in the mail!

It has been on back order since December, and I’ve had these long weeks of waiting to think about Braille writing and how the technology has evolved over time. I have a few other Braille gadgets, and I realized my acquisitions had unintentionally imitated the course of Braille-writing technology.

So this week I am going to share a bit about the tools I have and how useful they are. I don’t have something from every stage in the development of Braille tech, but it will be enough to give you a general idea.

Let’s start at the very beginning.

The Slate and Stylus

Welcome to the nineteenth century! This simple tool was invented even before Braille. Napoleon wanted a way for his armies to communicate at night, without light or sound, so he commissioned a guy named Charles Barbier to create a writing system that could be read without any light. Barbier had the idea of using fingers to read raised dots and lines. He invented a system and the slate and stylus to write it. His system was too complicated and never caught on, but Louis Braille learned about it a few decades later, and simplified it to create the six-dot Braille system we use today.

I got my slate and stylus last August from the Lighthouse for the Blind in San Francisco. I picked it up on a whim, because I wanted practice using my newly acquired Braille and this was the cheapest and simplest way to get started.

An image of my hand holding a Braille stylus and pressing it into the back of a slate with a piece of paper inside.

It works kind of like a stencil. The slate is a hinged piece of metal that clamps onto a sheet of paper. It provides a template that ensures the exact spacing necessary to create readable Braille. To write, you have to press the stylus, a blunt awl, into the appropriate guide holes.

One dot at a time.

Backwards.

That’s right, backwards. Because you’re poking the dots in from the back to raise them on the front side, you have to write every line and every cell in the wrong direction, like writing in a mirror.

It takes forever.

And then you flip it over to see how many mistakes you made.

An image of my hand lifting up the front of the slate to reveal the sentence

The problem is, since Braille cells have two columns of dots, almost every character is the mirror image of another one. If you aren’t paying attention and forget to flip them, you end up with ‘i’ instead of ‘e’ or ‘z’ instead of ‘and.’ One time I was making a sheet of notes. It took me more than two hours. and when I was done it was filled with typos (Braille-os? stylos? I don’t know).

You can get a better sense of the process by using this neat Slate and Stylus Simulator I found.

The Upshot: it’s better than nothing, but barely.

Braille and Cognition

Posted on by Eric Harvey

A couple of weeks ago, I went into the Smith-Kettlewell Eye Research Institute in San Francisco to hear a presentation by my friend Robert Englebretson. Robert is a professor of linguistics at Rice University. He is blind, and I met him through an email group of blind academics. In addition to his primary linguistic research on Indonesian languages, Robert has begun to research Braille reading using the tools of cognitive linguistics. It’s exciting research that points the way toward better Braille for everyone.

This particular presentation was about a study he had done on Braille contractions with his Rice colleague Simon Fischer-Baum. I haven’t said much about contracted Braille since my very first post, so I’ll recap: in order to save space and increase reading speed, there are a bunch of contractions that reduce the length of common letter combinations and words. Some of these contractions have to appear by themselves, but others can be used as parts of larger words. These include small groups of letters like [er], [ch], [ing], and [the], as well as words like [time], [ever}, and [less]. 

In English Braille, these contractions were determined largely by statistical frequency. The most common letter combinations and words got contracted, meaning the most possible space got saved on the page. In the days when huge tomes had to be hand-Brailled, this made a lot of sense, but it’s a practice that benefits the producers of Braille, and its effect on readers had never been studied. 

For decades, the prevailing assumption in Braille education has held that blind Braille readers expand all of the contracted words into their full print form before interpreting them. If this is true, then all contractions should be equally readable. But are they?

Granted, there are some contracted spellings that everybody agrees are a bad idea. My favorite is this gem:

⠡⠑⠐⠍⠁⠏⠽

In English characters, that’s 

[ch] [e] [mother] [a] [p] [y]

Chemotherapy. Sure, it’s space-efficient—it shortens a twelve-letter word to seven cells. But the two-cell (dot 5, m) contraction for [mother] is so ingrained to mean “mother” that everyone inevitably reads it something like “Key-mother-a-pee.” Is saving the space of five cells on the page worth losing a few seconds every time you have to make sense of this word? Not to me.

Robert set out to show that the same process happens in less egregious situations as well. You don’t often run into contractions as bad as “chemotherapy,” but there are many, many examples of contractions that cause momentary confusion and delays in comprehension. Take ”redo” for example, which can be written in Braille as [r] [ed] [o]. Most people can’t help but read it as “red-o.”

Basically, Robert theorized that reading problems occur when contractions conflict with our understanding of a word’s sublexical structure. We all intuitively understand that some words are made up of smaller units that have been smooshed together. “Redo” is the verb “do,” plus the prefix “re-.” We understand it as a two-part word, and when the [ed] contraction effectively erases the boundary between the two parts, we stumble over the reading.

And this is exactly what he found in a large number of similar cases. I won’t go into the methodology or technical details here, but Robert was able to show that fluent Braille readers took longer to comprehend words when contractions crossed sublexical boundaries than they did when the contractions did not cross boundaries. This implies that Braille readers are reading those contractions as single units, covering up any dividing lines that may exist within them. In other words, the theory that Braille readers uncontract words before they process them does not hold up.

To me, sitting in the audience, Robert’s results seemed right on. To be fair, I remember a time when I did have to uncontract every word I read. When I was first learning contracted Braille, I had to picture every word in my head, building each one letter by letter as I read each cell. But this was just a symptom of my inexperience, and I moved past it quickly. After a month or so, I no longer had to picture the words I was reading. Instead, the cells brought sounds into my mind—whether letters, syllables, or entire words. 

Then, maybe a month ago, something different happened. I brushed my finger over some Braille text and all of a sudden the meaning of the words came into my head. Not the sounds, the meanings. It felt surreal, how automatic it was. I took that for granted with print reading—for most print readers it becomes so automatic that it isn’t even a choice. Text is read as soon as it is seen, whether you like it or not. It was very strange to have that sensation in Braille. 

Right now that only happens with very simple language. Less common words take a little longer, and rare words or weird contracted spellings can trip me up pretty bad. As I gain experience, more will become automatic and everything will come faster, but Robert’s research suggests that some contracted spellings will never stop slowing me down.

The study shows that cognitive linguistics can provide valuable insights into Braille reading, and points the way toward further research. In time, we may be able to more precisely distinguish between contractions that help and contractions that hinder, We may also come to see which other features of the current Braille system improve speed and comprehension, and which do not. Eventually, research like this could influence best practices that optimize Braille for the human beings who read it rather than pages it is embossed on.