Category: Disability Rights

I Read Too

I talk a lot about Braille literacy. Many of you have probably heard this before—multiple times—and I’m sorry for repeating myself, but I’m going to anyway. Actually, I’m not sorry at all, because it just keeps coming up. This is the area of disability rights that I am most passionate about (at least right now), and for obvious reasons: I love to read. Books have always been my best friends.

 

So like any bookworm, I measure time by when books I want to read are coming out. In the last two weeks, two books I’m excited about have been released: The Girl Who Raced Fairyland All the Way Home by Catherynne Valente and Lady Midnight by Cassandra Clare. Just today, I found out about another book I want to read that was released today—Seven Ways We Lie by Riley Redgate (a current Kenyon student). Later this month, the third Colours of Madeleine book—A Tangle of Gold by Jaclyn Moriarty—will be coming out. But I don’t know when I’m going to be able to actually read these books. Not because I’m super busy (I always make time for books), but because they aren’t available in Braille yet. They will be, I’m sure, but I have no idea when.

 

This has been an issue my whole life. I had every single Harry Potter book spoiled for me except the last one, because the publishers gave an advance copy to the National Braille Press so they could translate it into Braille and ship the books to arrive on the release day. And that was a big deal. It shouldn’t be a big deal anymore. Technology has advanced so much since 2007, what with the proliferation of eBooks and Braille displays alike. It should just be the press of a few buttons to take a digital file of a book and translate it into electronic Braille. So why isn’t it happening like that?

 

The answer is that it’s probably a matter of some complicated subsidiary right that hardly anyone thinks about because the blind population is so small and the Braille reading population is even smaller. Which brings me to Braille literacy. Now, I enjoy a good audiobook as much as the next person, but I prefer to read in Braille. And the idea that the Braille-reading population is so small they don’t warrant the same attention as the general populace only perpetuates the problem.

 

The idea behind disability rights is inclusion in society at large, but because we can’t read a book at the same time as our peers, we are excluded. At best, we end up playing catch-up to our friends who have already read and discussed the book. But more often than not, especially with the internet and the way it tends to go crazy when long-anticipated books are suddenly available, major plot points of the book are spoiled for us, which could ruin our enjoyment of the book.

 

Yes, I’m blind, but I read too. And the problem of Braille literacy extends beyond fiction to education and employment issues as well.

 

Here’s the deal: only 10% of the blind read Braille—it’s true. It’s also true that hardcopy Braille is expensive and huge, and Braille displays and notetakers are expensive too (though considerably less huge). But none of this means Braille should be abandoned. Braille is the only viable way for blind people to read. A literacy rate of 10% is not evidence that Braille is impractical; it is evidence that 90% of the blind population is illiterate. Studies have shown that blind children who just use audio in school instead of learning to read do not develop the critical reading and thinking skills necessary for success in school and society. Denying blind children their right to be taught because it is inconvenient or expensive—as so many are—is a violation of their civil and human rights. All children who can see learn to read. It should be the same for children who are blind.

 

To give one analogy, the literacy rate of the blind in America is less than the total literacy rate in some of the least educated countries of the world, and it would be unacceptable to say the people of Afghanistan or Mali or Niger or South Sudan are illiterate because it is too expensive or inconvenient to teach them.

 

I love to read, but I am passionate about Braille literacy for reasons beyond my desire to be able to have a book in my hands the day it comes out (like everybody else, I might add). My parents had to fight for my right to learn Braille in elementary school, but many parents don’t have the knowledge or means to do that. When the school district insists that students who are blind don’t need Braille, how can they argue? But there is no substitute for reading when it comes to fostering independence.

 

Braille literacy is an issue all over the world. Programs like Perkins International send teachers and equipment to developing countries to teach Braille, believing that reading is fundamental to education, and education is fundamental to success. Yet Braille literacy is still a huge problem, even in the United States. Almost 70% of the adult blind population is unemployed, and this can be traced back to inappropriate or absent services in school, including lack of training in Braille.

 

On my first day at the New Hampshire Disability Rights Center, one of the attorneys told me about a decision involving a child who was not being taught Braille. The judge gave the decision to the school district in Braille and told them to read it without accommodations. This is the kind of thinking and action that makes a difference. It’s also just plain awesome! But there still needs to be a shift in the overall discussion towards how Braille can be extended to those who need it so the blind can have the same advantages as the sighted and reach their full potential as contributing members of society.

 

I Am Diverse

My coworkers at the Disability Rights Center asked me to share the essay I wrote for my diversity statement for my law school, and since then I’ve been thinking a lot about diversity. It’s a term that’s being thrown around a lot these days and with good reason. But while I hear a lot of “we need to be more diverse”—whether it’s in education or employment or the arts—I don’t hear a lot of why.

 

What I liked about the chance to write a diversity statement was that it captured the point of diversity, the essence of its value to society. It didn’t just ask if I belong to a marginalized group. It asked how belonging to a marginalized group affected my experiences and perspectives. That, to me, is what diversity is all about. It isn’t just a number or a label. I am a person who is blind, yes, but that doesn’t in itself make me diverse. Because I am blind, I have experienced my whole life differently even than someone with sight who did the exact same things I did. It is these different experiences and challenges that I have had to overcome that give me a unique perspective to add to any conversation. That, to me, is why diversity is important: it aims to add all voices to a conversation, thus enriching that conversation with the fullness of the human experience.

 

To that end, I wrote my own diversity statement about my experiences in my high school marching band: my feelings of exclusion, my struggle for reasonable accommodations, and finally success not only for myself, but also for the band and the community at large.

 

So without further ado, here it is:

 

Playing my clarinet in the school band was the first time I felt fully included in an activity with my sighted peers. But when I entered high school, the band started formation marching in the halftime shows at the football games, and our band director simply could not see a way for me to participate. I was forced to stand and play on the sidelines, conspicuously out-of-place as the rest of the band marched behind me. I no longer felt like I fit in. In fact, I felt like I stuck out like a sore thumb, standing by myself and playing my part isolated from my section. By the end of my sophomore year, I had had enough. I did some research about other blind people in marching bands, formulated a plan, and presented it to the music department. They said I could try it if I found someone to help me.

 

So I approached my best friend, Amy, and asked if she would guide me for the halftime shows. She agreed, and after a lot of tripping over each other’s feet and several collisions with the sousaphone section, we learned to move across that football field as if we were one person. Amy stood behind me and kept her hands on my shoulders. She was like my shadow, guiding me to each exact position on the field as I played, but we moved together: Backwards march. On beat five, start playing “Eleanor Rigby”. Float sixteen. Hold twelve and dance. I was part of the band again.

 

The local news came to the championship to film the marching band with the “blind girl,” and when they said, “Where’s the blind girl?” we knew we’d done it. Amy and I changed the marching band together. And the marching band, Amy, and I changed the community and its perceptions.

 

During the summer, I joined a team of blind and sighted teenagers, and we hiked in the Andes in Peru and whitewater rafted the Colorado River in the Grand Canyon with Erik Weihenmayer, the first blind person to climb Everest. Erik told us that when we work together, we all learn from each other, and at every step on those trips, we did. The blind members of our team were able to tackle and surmount an extraordinary physical challenge. At the same time, the sighted teens saw us climb those mountains and succeed. As we realized we could participate in sighted society, they realized they wanted us to participate—we were in fact great people just as capable and normal as they were, even if we had to approach challenges in different ways. Capable and successful people with disabilities break down barriers, change perceptions, and enhance communities.

 

And so it was with the marching band. I was not only able to march, but I showed the band, the school, and the community I could, and by extension, anyone can, given the opportunity. With our will and courage and music in our ears, Amy and I “stepped off,” together, “me and my shadow”.

 

Voting for Independence

Spend time in any foreign country, and you come back with a profound appreciation for America. Personally, after a year in Italy, I will never look at wireless internet or consistent hot water or dryers the same way. I have a friend in Japan right now, and from what I’ve heard, he really misses central heating. One thing I did not expect, when I went to Europe, was how much I would learn to appreciate voting. I am still thoroughly confused by how the Italian political system works, but based on conversations with my students and friends, Italians don’t vote for the specific candidates. They vote for the party, and there are a lot of parties. I taught a few lessons on American elections, and my students were always amazed and envious of the power Americans have in government. But one thing I was always sure to tell my students is that not everyone has the same power. I, as a person with a disability, have never been able to exercise my right to vote independently and privately before.

 

Almost from the moment our country was founded, America has expanded and then expanded again the electorate, creating laws that gave one disenfranchised group after another the right to vote: first the poor, then African Americans and other racial minorities and women. In 2002, Congress passed the Help America Vote Act, which guarantees the right to vote accessibly, privately, and independently to all people with disabilities. In 2009, I turned eighteen and registered to vote, and I have never been able to vote like everybody else. Twice, using an absentee ballot at school, I had to rely on friends to fill in my ballot for me. I trusted them, but at the same time, I couldn’t see who they were really voting for. The absentee ballots were far from accessible, far from independent, and far from private. When I signed the envelope afterwords, and I had to choose the reason why I was using an absentee ballot, I accidentally signed over the part that said “Because I am blind and require assistance.” The one time I voted in person, during the 2012 New Hampshire primary, when I arrived at my polling place and asked how I could vote independently, I was greeted with blank stares. I had to have assistance in the voting booth, and when I left, and the people conducting the exit polls asked who I’d voted for, I responded “I honestly don’t know.” (Because I’m that person.) Just two weeks ago, I learned that there was an accessible voting system available at the time, something called a phone/fax system. I’ve heard a lot of horror stories about it, but I never got to try it. I didn’t even know it existed.

 

But this year is going to be different. At the Disability Rights Center, I’ve been working with the voting accessibility team for the last several weeks on ways to make this election as accessible as possible and ways to promote that accessibility to the public. New Hampshire has just rolled out a new, accessible voting machine. It uses a tablet, a set of headphones, a keyboard, and a printer. An automated voice will read the choices to me, and when I hear the candidate I want to vote for, I press enter, and it prints out my ballot. It’s all been very exciting. It’s the first project I’ve worked on at the DRC that I’m seeing to fruition.

 

This morning, I went to the New Hampshire Association for the Blind and tried out one of the machines before the primary, and it definitely has some issues that need to be worked out. First of all, I have never heard a speech synthesizer so awful. I understand the state is working with free, open-source software, but when the speech is not lined up in each ear of the headpiece (so it sounds like it’s echoing itself) and when candidates names are pronounced so badly I’m not sure who they are, we have a problem. I’ve worked with all sorts of speech synthesizers all my life, and some mispronunciation is to be expected. I accept that. No computer can pronounce my name correctly if I don’t add it to the pronunciation dictionary, after all, so it only seems fair. But some of these mispronunciations made no sense. How we get “Burn Sanders” from Bernie Sanders and “Carl Fiorine” from Carly Fiorina (to give just two examples) is beyond me.

 

Another issue is that it is possible to vote for two candidates by accident, especially if you’re rushing. And after listening to almost 30 terribly mispronounced names, who wouldn’t want to rush? (Get this voice out of my head! Seriously, it’s like nails on a chalkboard! Make it stop!) But if you do accidentally pick two candidates, and you also happen to be blind, how are you going to know once your ballot gets printed? You’re not, and your vote won’t be counted. Which brings me to the ballots themselves, which are printed on regular printer paper rather than the cardboard used for everyone else’s ballots. Ballots from the accessible machine are easily distinguishable from other ballots, and they have to be counted by hand rather than the automatic ballot counter. If one voter uses the accessible voting machine, the election moderator is also supposed to use the accessible voting machine when they vote to create privacy for the person who used the machine, so it’s not too bad, but it’s still different. Finally, this machine is designed to be accessible to all people with disabilities. It includes a way of voting with voice rather than with the keyboard or touch screen, but due to some technical issues with the microphone being too sensitive, that isn’t working yet.

 

There’s a lot to work on with these machines, obviously, but I want to stress how great this really is. No, it’s not perfect, but it’s a huge stride forward for New Hampshire voters with disabilities. For me, if everything goes according to plan, tomorrow will be the first time I am able to vote as if I were sighted. And there’s a lot of potential for this technology, once all the bugs are worked out.

 

A few weeks ago, a friend linked me to a cartoon (and then described it to me because there was no alt text). In the cartoon, a group of kids are waiting in front of a school while a man shovels snow off the stairs up to the entrance. Among the waiting students is a girl in a wheelchair. She asks the man if he will shovel the ramp. The man says he will, as soon as he finishes with the stairs so the other students can go inside. He tells the girl in the wheelchair to be patient, but the girl says, “You know, if you shovel the ramp, then we can all go inside.”

 

This struck me as so simple and so poignant, yet at the same time so obvious that most people would overlook it as a solution. People with disabilities don’t want “separate but equal.” We want inclusion. This is the eventuality I hope for for this new voting machine. There shouldn’t be two systems—one for the able-bodied and one for the disabled. There should be one system that will work for everyone. That is obviously the intent behind this new technology: the system is called “one4all,” after all, and anyone can vote using the tablet.

 

So I’ll take the glitches, with the promise that things will be improved. Of course, if things aren’t improved, I will get cranky. But tomorrow, I’m going to vote!

 

Now I just need to figure out who to vote for.