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.

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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