Dark Side of the Cure, Part Two: Mixed Messages

Posted on by Eric Harvey

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

They deny jobs when the skills are sufficient.

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

They deny the blind full inclusion and integration into society.

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

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

Posted on by Eric Harvey

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

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

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

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

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

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

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

***

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

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

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

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

This is the hope for a cure.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Summer Doings and Things to Come

Posted on by Eric Harvey

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

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

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

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

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

Union Station Hotel, site of the 2018 ACB Convention

And went straight from there to Orlando for the NFB.

A photo of the entire 2018 NFB Scholarship Class.

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

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

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

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

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

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

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

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

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

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!

Notes on Traveling Blind from SBL 2017

Posted on by Eric Harvey

A photo of the City of Boston from a very high vantage point.

That special time of year has once again come and past, when 10,000 scholars of Bible and religion gather for a long weekend of research presentations, nerdy conversations, and drinks with friends and colleagues who are scattered across the globe.

This year, the annual meeting of the American Academy of Religion and the Society of Biblical Literature met in Boston. Since it was just a stone’s throw from my former home in Waltham and Brandeis University, where I’m getting my Ph.D., I came in a few days early. It gave me a chance to stay with excellent friends, mete with my dissertation advisors, practice yoga with my first teacher, and eat pancakes at the best breakfast spot in town. Then I found my way into downtown Boston for four very enjoyable days of conference.

Between Waltham and Boston, it was a great opportunity to test and assess my orientation and mobility skills.

You see, in addition to its value as a professional conference, SBL gives me a regular chance to reflect on how my declining sight affects my ability to navigate unfamiliar locations and situations (see last year’s entry here). Most of the year, my life is pretty routine. I take familiar streets and familiar trains to familiar places—not a great challenge. And on most other big trips, I’m accompanied by my family. SBL turns that all on its head, as I find my way solo through busy airports, navigate public transit systems, and search for rooms in cavernous and labyrinthine conference centers.

Last year, the big transition was using my cane throughout the conference, even though I only felt I needed it for safety at night. This year, I can’t imagine having gone without it. Boston is a city of confusing streets, more confusing subway stations, and entirely oblivious speed-walkers—the only downside to my cane was how often sighted people tripped over it.

Overall, though, I’d say this year was a navigational success. I got everywhere I needed to go—perhaps with an extra wrong turn or two, or three, or…

But my point is, I got where I needed to go.

The biggest new challenge this year was balancing my desire for independence with getting help when necessary. Most of the time, I like to figure things out on my own. And most of the time, this is a good thing. I find that bumbling through a confusing route helps me internalize it better than if I’m guided through, and that makes navigating it the next time much easier. Sometimes, however, the time I’d spend finding my own way is just not worth it, and it makes more sense to ask the nearest person where I am and which way to go.

But asking for help is like that proverbial box of chocolates. Or maybe more like a box that’s part chocolates and part over-bearing strangers who just grab right on to you and start dragging you off in god-knows-what direction. And part older European gentlemen who are very concerned that you are going to be all right.

The point being, you never really know what you’re going to get. Sometimes asking for directions brings you into contact with truly delightful people you never would have met otherwise. Other times, it turns into a very unpleasant experience that tests your patience and civility.

One time, as I stood looking confused at a fork in the road, a man came up and asked if I was headed to the conference center (how did he know? I was wearing the scholar uniform of khakis and a corduroy jacket, of course). I said yes, and he asked if I’d like to walk along with him. We spent the next few minutes discussing his upcoming commentary on the Book of Leviticus and my dissertation on psalms, until we reached the center and split off to our respective events. Perfectly pleasant.

Another time, I was trying to find a group of friends in a crowded Italian market/restaurant. I asked an employee where “Il Pesce” was, and without a word he grabbed me by the shoulder, pulled me across the market, and let me loose with just as little ceremony—in front of “La Pasta.” Luckily one of my friends came to fetch me, or I may never have found them.

Another time, an elderly man asked if I needed some direction. When I asked him to point me in the direction of the exhibition hall, he grabbed my arm (much more gently than the last guy, but still) and guided me all the way to the hall, even though I kept telling him I was ok on my own from here (and here, and here). I just couldn’t shake the guy!

I know this might make a lot of you nervous. A lot of people feel uncertain about how best to help visually impaired people and people with other disabilities. “Will they think I’m overbearing, rude, or awkward? Will they hate me for trying to help?” This is understandable—it’s a complicated issue that I hope to dissect more in future posts. But based on my experience so far, I have thought up a few tips that I think will serve you well in deciding how and when to help:

  • Don’t be afraid to ask a blind person if they know where they’re going. I know a lot of good-hearted people who don’t offer help because of the fears mentioned above. I’ll just give you permission: it’s ok to ask a simple question like “Are you all good?” or “Do you need some directions?”
  • BUT, believe the person if they say no, and believe them if they tell you they only need one piece of information, and don’t feel bad walking away once you’ve told them what they asked for.
  • In general—and this is good advice in all of life—don’t just grab people. Exceptions are allowed for imminent danger: falling pianos, quicksand, etc. Otherwise, ask before touching.
  • Better yet, ask if the blind person would like to take your arm. This is best practice for what is called sighted guide, but understand that not all blind people like to take an arm, or at least not all the time. Many of us prefer to walk beside you or a half-step behind, and walk independently with our canes.

Basically, let people tell you how to help them. Listen and trust that they know how to live and function in their own bodies.

On my end, I’m realizing I need to develop my ability to clearly and effectively communicate my needs to those who wish to help. This can be frustrating and difficult in the moment, but the more I think through my experiences and talk with people, the better I get.

Any other questions about how to interact with blind folks? Any other tips from blind travelers? Let me know in the comments!

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.