This post was originally written with the intention of using it for Blogging Against Disablism Day on May 1, an annual event since 2006, where people all over the world blog about something related to disabilities whether it be access, discrimination or negative perceptions of people with disabilities. The name of the blog that hosts this event is Diary of a Goldfish. Here is the link to the blog if you would like to read about this event or check out other blogs that participated in the event: http://blobolobolob.blogspot.com.
Unfortunately, due to a lack of inspiration on May 1, I wasn’t able to submit this entry on time, but it was indicated that people who couldn’t blog that day would still be included in the archives, so I will e-mail the host with the link to this entry as soon as it is posted. As my fourth grade teacher liked to say, “better late than never.”
On the release day for each of the Harry Potter books, my dad would stand in line at the bookstore early in the morning to buy a copy, which he presented to my brother as soon as he woke up. Then instead of watching cartoons or playing video games after breakfast, he would join in the Harry Potter hysteria, reading the book practically nonstop until it was finished.
I would get my book a month later. As ruthlessly as my brother teased me about my blindness in other ways, like randomly poking me on long car rides and getting away before I could prove it was him, to his credit, he never spoiled the Harry Potter books for me. Even he saw how unfair this long wait was.
I am not sure if I had to wait because the publisher wouldn’t give National Braille Press access to the book until it was released because of the whole secrecy thing that authors are obsessed with, or if the publisher did give them the book in advance but not enough in advance to get it brailled before the release day. But as a child, I didn’t care about the reason. I was just furious that a publisher would release such a huge sensation of a book before EVERYONE could access it. I am not sure whether or not getting the book on tape would have allowed me to read it on the release day, but I never liked listening to books on tape because there is something special about reading the same way sighted people do, with the silent experience of reclining on the patio or on the sofa, turning pages and reading the words for yourself. But when the mail man rang the doorbell to deliver the giant box, or two or three that was my book, and I got to bust them open and hold each volume in my hand, feel its newness and turn those crisp never-been-read pages feeling just like my brother did on the day of the book’s release, the wait was well worth it. (For the release of the final book, to my complete joy, I found out that National Braille Press was able to arrange for the book to be delivered on the day of its release! But why couldn’t these arrangements be made all along?)
Unfortunately however, my reading frustration has effected educational reading as well. In elementary school, many of my textbooks were only available on tape, and this actually would have been fine with me. Textbooks, unlike Harry Potter aren’t meant for pleasure reading. School books on tape were fine when reading a book cover to cover, but of course with textbooks, teachers assign specific pages. In high school, I was finally given a special CD player where you could just type the page you were looking for on a keypad and skip right to it, but in elementary and middle school, my educational experience was marred by the good old fashion portable four-track player that did not have this feature. Each book would come with a braille sheet that would say for example “cassette 1 side 1: pages 1-30.” But of course, the teachers had to assign pages 10-25, so I had the choice of either just listening to the first nine pages, or playing a tedious game of rewind, fast forward, listen for a minute, rewind fast forward listen for a minute, until I found, or got close enough to, the correct page. Neither of these choices were appealing to a kid who, like everyone else, just wants to flip right to the page, get the reading done and move on to better things. So although my teachers caught on and weren’t happy about it, I would often just ask my parents to read my textbooks to me, which they were happy to do because they didn’t think all the time spent just trying to find the page was fair either.
Even for Math, the one subject where my teachers recognized that the textbook had to be in braille, problems getting the book were not uncommon. One year, I think it was seventh grade, my parents and I came home from running an errand, to find a voicemail from my vision teacher who was in charge of ordering textbooks.
“I found the textbook Allison will need for Math next year. But do you know how much it is going to cost? Five thousand dollars!” she said in a tone of utter shock and disbelief.
Now of course, a braille book is going to be more expensive because braille is such a specialized code that the producers of these books have to get trained in which costs money, not to mention the fact that braille just takes up a lot more space than print. (For sighted visitors to this journal who may be unfamiliar with braille, one page of print can require as many as four pages in braille). In addition, math also requires the duplication of graphs and diagrams. But still, my parents, teachers and I were astounded by this price. I still remember my mom saying as a joke, “are the pages trimmed in gold or something?” Fortunately, I live in an affluent school district, but in many districts, ordering such a pricey math book would not have been possible, preventing the student from participating fully in class. But actually, I have not always been able to participate fully in class myself because often times I had to use an older addition of the same book because the newest addition the regular class used was not available in braille. I was still learning the same concepts, but I had to be assigned different homework problems than the rest of the class and thus didn’t benefit as much from the regular teacher’s lecture, which was based on the problems the other student had done.
And then came college, where I was ultimately responsible for having the textbooks I needed, not my vision teacher. Fortunately, I have gotten better at coordinating with the Disability Services Office at my college, thanks to my dad who assured me it is not rude to put a little pressure on them and tell them I really need my textbooks on time. We even start checking the bookstore as soon as one semester ends, buy the books as soon as the bookstore receives them, and take them to the Disability Services Office right away for scanning. But the first year of college was rough. First semester, despite getting the books to them in July, I found out on the first day of class that they had barely started scanning them. By the time chapters did start trickling in to my inbox, the teacher had often assigned them the week before. If it weren’t for the fact that I lived close to home and am blessed with dedicated parents who read my textbooks aloud for me, I almost certainly would not have received the excellent grades that I did. Second semester, my parents and I thought we would try scanning the books ourselves since the state gave me a scanner and Kurzweil software that allows scanned pages to be read by a screen reader like JAWS. I couldn’t put up with this plan any longer than one semester though because I don’t know if it was the way the print textbooks were formatted, or if I didn’t have the highest quality scanner, but whatever the reason, it wasn’t uncommon to have large sections of illegible garble. In the time it took my mom to help me edit the garbled sections, I swear I could have done the assigned reading five times! Fortunately by sophomore year, I was much more comfortable advocating for myself at the college level, politely speaking up when I needed a particular chapter that hadn’t been sent to me yet. But another problem still drives me crazy. I have yet to do a research paper where I don’t have to deal with at least one PDF file that is a scanned page so that my screen reader cannot read the text, or one book that I would really like to peruse but which I cannot access. With the unreadable PDF files, I e-mail them to the disability services office which has been great about cleaning them up and sending them back to me, usually by the next day. With books, I have not had as much luck and thus have resigned myself to the fact that if it is not available on bookshare.org, (a site where people who are blind or dyslexic can register to download electronic books for an annual $50 subscription), I might as well not waste my time trying to find it anywhere else. Case and point? For a research paper I had to write this semester for a Public Policy course regarding the FCC’s regulation of indecency and profanity on television, I saw an awesome editorial, at the end of which it was indicated that the author of this editorial wrote a book called “The Decency Wars: The Campaign to Cleanse American Culture.”
Since this short editorial had such excellent arguments, I thought it would be cool to peruse the book and see if I could use it to expand on the arguments in the editorial. So I checked Bookshare. It wasn’t there. I checked Recordings for the Blind and Dyslexic. A totally unrelated book by the same author was there, but not the book I needed. It wasn’t available on any mainstream audio book company sites and it wasn’t available at all from my local library. It wasn’t even available as an electronic file on Google books or Amazon. I thought that was a pretty in-depth search, but when I saw a contact form on the web site of the book’s publisher, I thought I would fill it out and explain my situation. My hopes was that they would direct me to a company I may not have heard where I could get the book directly. Instead, I received a reply a few days later saying that I could contact the disability services office who could contact the publisher for an electronic copy. Now, I am very aware of the Disability Services office doing this every semester for my textbooks, and based on how long it took for the books to be sent in the past, I think there is a lot of red tape. Then, when the books arrive, they often have to be cleaned up or converted to word files so that I can read them. Don’t you think that is a lot to ask of the Disability Services people for a book that I only wanted to peruse, that I might not even use in my research paper at all? Needless to say, I just cut my losses with that book and found another less awesome sounding but adequate book on Bookshare.
I think what I am trying to say with these experiences is that I wish mainstream companies from education to recreation would stop and think a little more about how much equal access means to people with disabilities. Alright, I recognize there does need to be a little give and take. In an ideal world, it would have been cool to wait in line and get Harry Potter in braille, direct from the bookstore. But that would be a lot to ask since as I mentioned earlier, braille takes up a lot of shelf space! But in the 21st century, isn’t it a bit outrageous that it takes a month from the time the book is released in print until it is available in braille? I have heard four-track players are pretty much obsolete now, thank God! But again, why on Earth does a math book cost $5,000, and why haven’t publishers thought about the fact that releasing a new print addition before it can be brailled puts blind students at a disadvantage? In this the internet age, why aren’t all books available electronically so that blind people can purchase them directly like everyone else? In the 21st century, is it too much to ask to want to just be able to open any file and start reading, with no garble or scanned pages that screen readers cannot recognize? In other words, with all of our technological advancement in so many other areas, shouldn’t blind people be able to access a book or file just as easily and efficiently as anyone else?
It is not generally my nature to gripe like this, and I really don’t think these access difficulties are intentional. I’m sure the publisher that created the scanned PDF pages wasn’t thinking “I hate blind people. I am going to scan this in such a way that they will have a harder time reading it.” I think the problem is simply that because blind people are a minority, there is not a lot of awareness or education regarding our needs in mainstream society. Without education or awareness, it would make sense that there is not a lot of thought given to these issues. So I hope that sighted people, especially those in the field of publishing educational materials, will stumble upon this entry and at least start thinking about these issues. Being the young optimist that I am, I have faith that with a little awareness, society would be more than willing to put these thoughts in to action, making the world a little more accessible for all.