The Hardest Part

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?

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 hudnreds 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 wa  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

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

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.

SBL!

A photograph of the San Antonio Riverwalk. Just like me, the people in this photo have not fallen in the river.

I just got home from San Antonio, where I attended the Annual meeting of the Society of Biblical Literature. SBL, as we call it, is the largest conference of biblical scholars in the world, and it’s held in conjunction with the American Academy of Religion. This means that for one weekend a year, thousands upon thousands of scholars in biblical and religious studies descend upon one unsuspecting American city.

The scope of the thing is truly mind-boggling. There are hundreds of papers and presentations each day, covering every conceivable topic within and around biblical studies and religion. It’s a great place for scholars to hear about new discoveries, new ideas, and new approaches, and to share their own ideas and get feedback before committing them to print. But the best part is reconnecting with friends and colleagues and meeting new ones. The conversations over dinners and drinks are consistently stimulating and gloriously nerdy.

For me, SBL also offers a chance to reflect on how I am changing and still need to change as my sight wanes. It’s a different experience every year.

The most noticeable change this year: I used my white cane. Last year I brought it with me, and I carried it in my bag throughout the weekend, but I never actually took it out to use it. This time I had it out almost the entire time. Inside and in daylight I don’t really need it for the large-scale tasks of orientation and navigation, but it warns me of curbs, planters, and benches, and warns people around me that I will definitely run into them if they don’t move. At night on the narrow and winding Riverwalk, on the other hand, I needed the cane (and a few timely nudges from my friends) to keep from taking a swim.

The social and networking aspect of the conference keeps changing, too. I’ve never been great at picking faces out of a crowd, but now it’s near impossible. I’m sure I walked right by dozens of people I should have said hello to, and failed to notice friends and colleagues attending sessions with me. Name tags are useless, so I’m sure I also miss out on meeting scholars whose work I know but have never met in person.

Even meeting close friends can be disorienting. Suddenly someone appears right in front of me, or beside me walking in lockstep, and it takes a few seconds to piece together who they are from their voice and whatever visual clues I can get. Sometimes I start a hug or a handshake without knowing who’s on the other side, and recognize them halfway through. Luckily, my assumption that people who want to hug me or shake my hand generally have a good reason to do so hasn’t backfired yet! 

I am curious to see how my experience of the conference changes over time. It will continue to provide a benchmark for my vision and adaptation, as well as for my scholarly career. Next year I plan to present a paper—a dual novelty since it will be my first paper at an academic conference and my first presentation from Braille notes!