Posts Tagged 'blindness'

Blogging Against Disablism Day 2013: Stop Doing More with Less

Last year on May 13, I graduated from college with a Bachelor’s degree in communication with a journalism emphasis. Today, May 1, 2013, almost a year later, I still do not have a job. My parents constantly remind me this is nothing to be ashamed of. There is a good chance that I wouldn’t have found a job by now even if I wasn’t blind. The recession is technically behind us according to economic experts, but companies are still slow to hire, fearing what our dysfunctional Congress might do next. The unemployment rate is dropping, but this is largely because a lot of people have become so discouraged they gave up looking for work altogether and these people aren’t counted in the unemployment figure. My brother-in-law earned a PhD six months ago in Microbiology, and he hasn’t had any luck finding a job either. Even so, I cannot help feeling like my blindness stacks the deck against me in ways that it shouldn’t in the 21st century, in the United States, a country founded on ideals of fairness and equality.

     I blame this on corporate CEO’s. Every time I listen to an interview with a company CEO on a news program and they mention phrases like “efficiency” or “doing more with less” a wave of frustration surges through me because while I am not an expert on anything, I have the sneaking suspicion these phrases are part of the reason why 70 percent of the blind population is unemployed.

     It seems as if all industries put these phrases in to practice to some extent, from government, to manufacturing, to medical care and education, but especially journalism. Print journalism could be, should be, and I think used to be a very blind friendly field. With all of the screen reading software, or even a notetaker with a refreshable braille display, writing stories or taking notes during interviews is no problem. If a story requires interviewing someone at a different location, all that is needed is someone–like the photographer who had to accompany the reporter to take photos of the interview subjects or a scene anyway–to drive the blind person to the site and assist him/her in finding the location where the interview will take place if it is a site the person has never been to before. The actual interview requires no vision at all to yield excellent results. My junior year of college when I inquired about an internship opportunity, a person told me that I couldn’t interview people, a major component of that internship, because looking at an interviewee’s body language is an essential part of interviewing. I did not end up applying for the internship because I wasn’t in the mood to waste time and energy fighting this narrow-minded person’s misconceptions, and I ended up finding another excellent internship with a wonderful, open-minded supervisor. But the fact is, while it is true that blind people cannot watch someone’s body language, we are very attuned to a person’s tone of voice, and tone of voice almost always betrays the same things as body language. So interviewing is a very blind friendly task as well. At one time, this was all that journalism used to entail: researching a story through interviews with primary sources that witnessed or were involved in a news event and writing short articles about these events. Photographing an event was a separate job for the photographer, and broadcast journalism was a separate field. But while I was in college, the combined effects of the recession and the exponential growth of social media and free smartphone apps ravaged the journalism industry. By the time I graduated, newspaper staff was dramatically reduced, and just as professors had warned, newspapers were now looking for multitalented reporters who could write well but also produce photos and videos. After all, the biggest expense incurred by businesses is paying employees, so if technology allows for one person to do a job that used to be done by two or three people, the business saves money.

     I wouldn’t mind having both writing and photography duties if technology made this possible for me, but as far as I know, technological advances related to photography have been about making cameras smaller or allowing synchronization to other devices or live streaming to an internet site. There has not been any advancement with regard to helping a totally blind person know where the camera is pointing. I have tried shooting photos and videos of my face and my pets on my iPad for posting to youTube or Facebook just for fun out of curiosity over what it might feel like to be a sighted person with a camera. But despite my sighted parents’ best efforts to explain how the camera needs to face the image I want to capture and be held a couple feet away from it to capture the whole image,  only a couple of the several attempts made were deemed acceptable for public viewing by my parents. Often times, I thought I had the camera facing where I wanted it to be, but the image couldn’t be discerned at all, and on a couple of occasions, I inadvertently captured some, well, inappropriate images if you know what I mean!

     Anyway, my point is that because of my disability, I cannot shoot photos or videos, but I could be an excellent interviewer and writer. Yet when I peruse job postings online, I hardly ever come across jobs that don’t have at least one or two responsibilities that would be iffy if not impossible given the fact that I am totally blind. It’s not just newspapers that are guilty. As I came to appreciate the fact that journalism is a very competitive field and even people without disabilities have a difficult time nabbing a journalism job, I decided to look at Public Relations jobs instead since journalism and public relations skills overlap. But even with these job postings, hiding somewhere in every list are phrases like, “participation in the selection, production and coordinated use of still images and videos,” or “exceptional attention to detail and a keen sense of design,” which to me insinuate in a subtle but firm way, “blind people need not apply.” In my idealized childhood mind, I remember thinking that if I just advocate for myself and all the things I can do assertively enough, or impress an interviewer enough with how well-spoken and educated I am, I could get hired for any job I wanted and my coworkers would like me enough that they wouldn’t mind pulling a little extra weight by handling the visual stuff. But then I gradually became aware that the corporate world is different than the warm, friendly and accommodating school atmosphere. Corporations are not about friendliness, warmth or accommodation. They are about turning a profit. There are laws, most notably the Americans with Disabilities Act and the Equal Employment Opportunity Act that try to force employers to hire and provide reasonable accommodations for people with disabilities, but with a simple form letter, an employer can just pretend they found a better qualified candidate. If a person with a disability gets this letter after attending an interview and suspects that the company really just found a candidate without a disability so they wouldn’t have to go to the extra expense and effort to accommodate a disability, you cannot prove this intention with absolute certainty in court, especially since as I said earlier, lots of people without disabilities are also unemployed.

     I am careful not to mention the fact that I am blind in my application materials unless I am applying for a job with an organization that serves the blind, so I am confident that the fact that I haven’t been called for an interview is due to nothing more than the competitive nature of the job market for everyone and my resume just didn’t stand out. I haven’t applied to any jobs since March because of the very few job postings I find in my field, none of them appealed to me so I am considering giving up the job search and maybe going to graduate school to see if more education opens up better opportunities.

     But when I was looking for jobs, I would apply for ones that looked like they only had one or two visual responsibilities: Jobs with multiple visual responsibilities intermingled with the writing duties scared me away. And then I would await the form letter, half hoping for an interview but also half scared about how I would tout all that I could do and convince an ignorant HR person that my skills were worth the extra effort and expense of accommodating my disability, even if that meant hiring another person to handle visual stuff when the company only planned on hiring one person to do it all. I hate to be cynical, but I would almost be glad to see the form letter of rejection before the company could meet me and find out I am blind because as greedy and profit centered as corporations seem to be, I am convinced they would pull this dirty tactic on me, showering me with fake kindness when they see me walk in with a guide dog and pretend to interview me when they have already made up their mind that hiring me would be too much of an imposition.

     I don’t think more laws are the answer to this problem. If new laws are passed, some people will only find new loopholes to avoid complying with them. Besides, I don’t want to be hired just to meet a company’s quota in compliance with the law, especially if I can pick up a vibe of resentment. I also don’t want to be taken advantage of, hired as a charity case by a company and then paid a lower wage then someone without a disability doing the same work. Sadly, even what I thought were upstanding nonprofit organizations like Goodwill are guilty of this practice, and I think it is wrong. In other words, like most people with disabilities I have met, I don’t want to be treated any different than everyone else.

     With that in mind, in my opinion what is needed is not more laws, but an overhaul of the whole corporate mindset of doing more with less. I have noticed that even people I know who do not have a disability hate this mindset because when companies try to do more with less, the quality of their services and the health of employees often suffer. For example, I am friends with former nurses who noticed that gradually more and more responsibilities were being heaped on to them. When nurses would retire or quit, they sometimes were not replaced and if they were, they were replaced with young nurses right out of college that the company could pay way less. Of course, all young people in any field need to start somewhere, but when a company opts to hire a disproportionate number of inexperienced people rather than a nice balance of experience and youth, mistakes are inevitable. In terms of my own field of journalism, because I read newspaper articles on NFB Newsline, a free service blind people can sign up for to access newspaper content more easily, I am not aware of the proportion of advertisements to articles in a newspaper. But my parents have said that the Sunday paper which used to be fat and full of articles, is now thinner and has a lot more advertisements. I have no doubt this is because when a reporter has to take on more stories due to staff cutbacks, and be a writer, photographer and videographer rolled in to one, of course they cannot produce as much content as they used to. And instead of being just pleasantly tired but satisfied at the end of a hard day’s work, I know people from all fields who come home exhausted from burning the candle at both ends all day.

     The journalism industry really is struggling as people shift toward free web content for their news, so I understand why newspapers would need to cut costs, although on a side note, people need to get used to the idea of paying, even for web content from a newspaper. People have always payed for other forms of information like books and we will pay for intellectual services like legal advice. So paying for high quality journalism from a respected newspaper that has professional standards and rapport in the community shouldn’t be viewed any differently. But aside from that, at the same time many corporations said the recession forced them to “do more with less,” and even plead for government bailouts, they continued paying their CEO’s ungodly salaries, and when the recession was technically over and they were found to be making record profits, many did not hire back the people they had laid off. Yes, the reality is companies do need to be financially cautious because Congress has been gridlocked and useless lately. But if a corporation is making any profit, especially “record profits” they could hire more people. I think some corporations are just using the uncertainty in Washington as a convenient excuse and justification to continue being greedy.

     So forgive me if this sounds like a socialist statement, but I really think the only way we will improve employment prospects for everyone, including people with disabilities is to get the corporate mindset away from the whole idea of turning a profit as the primary goal. If a company wants profit that they can invest back in to the company to expand it, at some point that is unsustainable. I know someone who was laid off from the company he worked for precisely because they expanded too much and went almost bankrupt because they expanded beyond the level of demand for their services in the market. If a company wants to turn a great profit so that the owners can retire early and live lavishly, that is just immoral when so many people, even in the United States, can barely make ends meet. And it could ultimately be unsustainable too if there comes a point when these practices put so many people out of work that nobody has money to buy a company’s product or service anymore. So it is time for companies to put less emphasis on profit and more emphasis on social responsibility.

     When corporations talk about social responsibility, this usually means donating a little bit of their proceeds to local schools or assuring consumers that they only buy from fair trade producers if they sell things like chocolate, coffee or clothing. This is great and corporations should continue these practices. But companies also need to think more about how they can apply social responsibility “at home” so to speak. Company CEO’s need to start asking, “has the quality of the company’s product or service deteriorated at all since we rolled what used to be two or three jobs in to one?” If the answer is yes, and if the company has enough money to separate these jobs again, they could practice social responsibility by not sitting on so much of this money and hiring back some people. If a company has enough money to hire people, there is no excuse for the current situation where people lucky enough to have jobs are worked to the point of exhaustion while so many people cannot find work at all. But this kind of social responsibility could benefit the company as well because if the burden on each employee could be lightened by hiring more employees, and if each employee could focus on their unique talent and perform that talent well, rather than frantically trying to do it all on an inevitably mediocre level, employee morale and the quality of products and services could be improved, and maybe consumers who stopped buying products from a company when they noticed a decline in quality would decide to return and the company could make more money! Maybe it wouldn’t be the record profits they used to make when they rolled multiple jobs in to one, but I bet it would be enough.

     A lot of people don’t like well-intentioned but ineffective laws that try to address diversity problems with quotas and I don’t blame them. Perhaps I am among them because I don’t want to be hired by a company just to satisfy a quota either, nor do I want companies to view accommodating my disability as an imposition or treat me as a charity case. But the “doing more with less” philosophy hasn’t been good for anyone except maybe the CEO’s, so while you could call my thoughts naive and unrealistic, I truly believe that a change in mindset, not laws would be a much more effective solution that would indirectly improve the employment prospects for people with disabilities, while generally improving the quality of life for everyone.

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Back in the Game

Well hello readers! Long time no see, I know! But it has been an eventful three months. First, there were the Christmas festivities, and the gift of an iPhone. It was such a thrill to be able to send my first text messages and give Siri voice commands that I forgot all about blogging. Then on New Year’s Day, I came down with a nasty virus that required my parents to call 911 because of underlying medical issues. It knocked me down for almost a week. But as soon as I was well, Mom caught it too. She didn’t have to go to the hospital since she doesn’t have other medical issues like me, but it still packed a punch for her too, so I did the dishes and nursed to her. But the largest contributor to the delay was my braille notetaker. Ever since the cable company came out to our house and installed an updated modem so we would have more reliable internet access with our iPhones, my braille notetaker wouldn’t connect to the internet. The network was detected when I scanned for it, and I triple checked to make sure I typed the password correctly and in the right field, but when I would try to connect to the internet, it would say “not connected.” So I contacted my local vendor and when I mentioned that I had never successfully upgraded the computer, (see Trusty Rusty post about that frustration), I was told that I needed the upgraded version to connect to the internet. So I hung up the phone, got brave and figured out how to download the upgrade installation files on my desktop computer and transfer them to a thumb drive which is compatible with the braille notetaker, as the vendor suspected that my braille notetaker couldn’t handle downloading such large files. Nope, still didn’t work! So I called the vendor back and he suggested getting the files from a different site as they could be corrupted. When this didn’t work either, I was so frustrated I threw in the towel and on January 17, shipped the braille notetaker back to the vendor via the UPS store. I figured it was probably a simple procedural thing I was doing wrong, and the vendor would install the upgrade in a snap with an exasperated sigh and mail it back before I even missed it. The good news was I wasn’t incompetent after all! Somehow my flash disk had become corrupted and he couldn’t install the upgrade either. It was shipped off to Humanware headquarters right away for more extensive repairs, but because my DVR counselor was swamped with cases, it took two weeks for the purchase order to be authorized. I admit I was getting pretty restless and bored toward the end of this time, but I actually coped with the absence of my favorite piece of technology better than I thought I would. Working in my favor was the fact that I am no longer in school. If I had to read textbooks using synthetic speech or haul a Perkins brailler to class for notetaking, I probably would have lost my mind. But in this current transitional time of my life, the braillenote is more of a luxury than a necessity. In fact, my vendor offered to loan me another notetaker until mine was fixed, and I almost accepted the offer. But a second later, my conscience prevailed as it occurred to me that the vendor probably only had a limited number of units, and I think he serves the whole state. It would be unethical for me to take a unit just to goof off when someone who is actually contributing to society through their job, or pursuing an education may need their unit repaired and would need the loaned unit more. So I decided I could do without, especially given that I had plenty of other technology alternatives to keep me occupied.

     So how did I stay occupied in the absence of my best friend, technology speaking? Well, I guess you could say I got better acquainted with other friends, figuratively and literally. Early on, I entertained myself by listening to audio books. In October, I met with a friend from middle school who said she listens to books on tape while she drives, and she gave me a book she had finished listening to called Forgive Me. It was a really good book about a journalist who couldn’t wait to leave her boring hometown near Nan Tucket and tragic childhood behind. Her mother died of cancer when she was six years old and her father coped by burying himself in his job. She thought she loved traveling the world and covering horrible stories like apartheid in South Africa, but as she grew older, she realized she longed to spend the rest of her life with a doctor she fell in love with and live a simple life back in Nan Tucket. I had forgotten about this book since I usually just default to downloading books from Bookshare. Before Bookshare, I had listened to books on tape frequently, but since then I have forgotten about the power a good reader has to bring a story to life. I also listened to Monday Mornings, a novel written by Dr. Sanje Gupta about the lives of doctors and nurses, and coping with medical mistakes.

     Each day, I also enjoyed keeping up with friends on Facebook using my iPhone, although I don’t miss the iPhone Facebook app at all! Voiceover would sometimes pronounce words really weird, so I would have to use the arrows to read statuses letter by letter. I also had to think carefully before writing anything, be it a Facebook status, a comment or an e-mail because without cursor buttons, it was very tedious to go back and change a word or sentence! And as if that weren’t enough, an “upgrade” to the app ended up being a downgrade for the blind because instead of the traditional text box to write what’s on your mind, they changed it to a system that voiceover doesn’t interact as well with. I could read what I wrote as a whole, but not letter by letter as I typed. After typing very carefully for a few days, it occurred to me that I could e-mail my status to Facebook, which I did for the duration of my braillenote’s absence. But all of this tedium and frustration renewed my appreciation of how beautiful braille really is, and I said as much on Facebook as soon as my braillenote arrived!

     But best (or maybe worst) of all, I became addicted to Hanging with Friends, a delightfully accessible virtual version of the classic Hangman, with really cute sound effects. When I get a word right, there is happy music, and when I have used up all my strikes and get a word wrong, there is what I think of as “aw, bummer!” music which is followed by the sound of one of my balloons being popped. These sound effects are built in to the game, so they are the same ones sighted people hear. The iPhone’s voiceover reads blank spaces in my opponent’s word as question marks and when I select a letter by scrolling to it on my keyboard and then double tapping the phone, voiceover will say “strike” meaning it’s wrong, or “played” meaning it’s right. The game also makes a happy “ding” when a letter is played, and does a faint drum roll when I only need one more letter to solve the word. When it is my turn to make a word, voiceover reads all the letters randomly assigned to me, tells me how many points each letter is worth, and indicates clearly which slot is a double letter, triple letter, double word or triple word. Unlike Words with Friends which is not accessible to totally blind folks like me because you have to drag the letter to the appropriate square with your finger, Hanging with Friends automatically puts the first letter I tap in the first slot, the second letter in the second slot and so on. I apologize if I am boring blind readers who are familiar with this game, but I wanted sighted readers who stumbled on this blog to understand it.

     Each player starts out with five balloons and the objective is to pop all of your opponent’s balloons by stumping them with tricky words. When I got my first braillenote in high school and discovered it had text adventure games, I was thrilled. I had always wondered what it was like to play a computer game, and I guess it was kind of fun navigating fictional worlds and encountering virtual danger. But despite hours of effort, I never fully figured out how to play these games because the objective often wasn’t clear, at least not to me. Maybe it was crystal clear to people whose minds like adventure and I was meant to be a wordsmith instead. I think Hanging with Friends is also more fun because it is a mainstream game I can play with sighted friends, whereas Text Adventure games are designed to be single player games, and I wouldn’t be surprised if only blind people have heard of them. Anyway, the point is, I quickly fell in love with this game and six weeks later, the addiction is still strong! In fact, even with my braillenote back, I find myself playing that game more than I am using my braillenote!

I’ve gotten good too! In the beginning, I was getting every word an opponent threw my way wrong, but with practice, I have figured out a strategy and use logic to my advantage! I probably shouldn’t reveal trade secrets, but I guess if readers want to use them to fool me, that’s alright because then I can develop new strategies, sharpen my brain and become even better! So when I get a word, I first see how long it is, and see which vowel is already filled in for me. Then, you know how at the end of Wheel of Fortune when there is a bonus round and the host reminds contestants of “r, s, t, l, n and e” the most commonly used letters in words? Well I would use up all my strikes if I tested all those letters, but through experience, I figured out that the words opponents send me almost always have an r, an s or a t, or occasionally all three! So I always test those letters right off the bat. After that, I just carefully analyze the length of the word, which letters are filled in, which spaces are still blank, and sift through my brain and think about letter sequences that would make sense. For example, if an e is in the second slot, I always test A next because there are a tun of ea words in the english language. If e is the second to last slot and the last slot is blank, there is a strong chance that the last slot will be a d because there are a tun of ed words. In this way, I gradually piece together the word. Of course, I get words wrong, especially when tricky opponents send me words I have never heard of before. I have lost games, but I have won a lot too! I have also gotten more creative about making sure to utilize the double and triple word and letter slots to accumulate points faster too. For every 200 points you score by creating words, you earn 20 coins which can be spent on lifelines or items in the virtual shop like fancier balloons for your character, or they can be saved. When I reached 400 coins, I bought or should I say “unlocked” fancier balloons, but I started over after that and plan to save them because I think once you reach 5,000 coins, you advance to a more challenging level, which sounds exciting! Wow, I really need a job, don’t I!

     Anyway, while I was getting addicted to this game, Humanware made my old braillenote seem shiny and new again. When Humanware received my braillenote, they also discovered that the braille display and keys were dirty. In fact the braille display was so dirty according to the report from my vendor, that it had to be cleaned twice! I couldn’t tell from his tone of voice whether he was just stating the facts like an objective reporter, or if he thinks I’m a slob, but that’s alright. However my mom, who knows I’m a slob in other areas (like my blanket that I always find neatly folded on the couch in the morning when it was tossed aside in a heap on the couch before bed the night before) but loves me anyway, laughed. In my defense, I tried cleaning the braille display with what I thought was a soft damp cloth once as the manual instructs, but the cloth was either too rough or too damp and one of the braille dots never worked again, so I decided from then on that cleaning such an expensive unit is better left to the professionals! At the time I attempted to clean the display, Mom had a very demanding job, so Dad and I tried as much as possible not to trouble her with trivial matters like the most appropriate cloth to use in cleaning braille displays and since this happened during my internship in the governor’s office, I couldn’t afford to be without my braillenote. Since the damage to the braille cell was caused by my own hand, I decided I could live with the consequences. When I was reading and a word didn’t make sense, I was able to just fill in the missing dot in my mind and eventually pretty much forgot it was missing at all, so I could have accepted it if Humanware only fixed the corrupt flash drive, which I don’t think I caused, and left my braille display as is. But it is such a joy to have all the dots crisp and clear and in working order that I am treating the braille display like a baby, being extra diligent about making sure my hands are clean and sliding my fingers as lightly as possible. But when I told Mom about the mishap just recently, she informed me that there are special cloths designed specifically for cleaning electronic equipment, so when the braille display needs to be cleaned, I should not be afraid!

     A couple of other exciting events took place in my braillenote’s absence, but this entry is getting long, and since they relate to a different subject entirely, I should talk about them in a future entry. So for now I just want to say that while I didn’t mind listening to audio books or learning a new game, it feels good to be back in the braille reading and blogging game again.

Thoughts on Voting and Trust

On April 3, our state’s presidential primary was held, and on the way home from class that afternoon, I voted. Actually, it would be more accurate to say I trusted my mom to cast a ballot for me.

     I had been looking forward to voting ever since my dad went to vote in the last election in which I was too busy with school conflicts, and he came home reporting that our precinct now had an electronic voting machine for the blind. But when I got to my precinct last week, I found out it wasn’t working. Maybe I should have put some pressure on the pole workers because while I disagree with the militancy of organizations like the National Federation of the Blind in some respects, I have always been bothered by the fact that some blind people are denied the right of a secret ballot. But I didn’t say anything for three reasons.

     For one thing, our voting precinct is my former elementary school full of sweet memories. In addition to the innocence and simplicity of elementary school life–three recesses, birthday treats, holiday parties and crafts–I remember thinking even as a little kid how cool it was to have a precinct at my elementary school as this created extra opportunities for early lessons on civic engagement. In first grade, I remember when a teacher showed me the machines that counted votes the day before the 1996 election as the gym was being set up. In third grade, I remember when Dad let me stand with him while he voted before dropping me off at the before-school day care and then let me wear the “I voted” sticker. It was fun to pretend I was a grown-up by proudly displaying that sticker, but I couldn’t wait for the day when I could wear that sticker legitimately.

     I remember how sometime around every election, even the ones when I was too little to care about them, Mom would talk about how the right to vote is a fundamental right in a democracy and a privilege we should take advantage of since it is one many countries still don’t have. Besides, if you don’t vote, you have no right to complain. This statement has always stuck with me and while I admit I have skipped a couple smaller elections because of long school days, I do my best to make every election and will even occasionally encourage my college friends to go and vote. (It is baffling how many people in my demographic don’t bother to vote.)

     Every time I go back to my former elementary school to vote, I hear little children playing games and screaming happily in the other gym and am always recognized and joyously greeted by a teacher or office worker who remembers me, which brings these sweet memories flooding back to me. The friendly, elderly sounding pole workers are the perfect icing on the cake. So as silly as it sounds, I didn’t want to spoil this friendly environment full of sweet memories by complaining.

     It also occurred to me that everyone else at my precinct still uses the voting equipment that the teacher showed me way back in first grade where voters mark paper ballots and then walk them over to a cool machine that suck the ballots out of their hand and counts them with a beep. (That’s the real reason I didn’t complain. I didn’t want to miss out on using that cool machine! Just kidding.) I don’t know enough about voting technology to know whether my electronic vote would be aggregated with everyone else’s paper ballots or if there is a chance it would be separate. If my vote is counted separately, that would mean the ballot would be secret from my mom, but the county clerk could see who the one blind person using the electronic machine voted for. Given that our county clerk has raised some suspicion lately with strange glitches in the counting of votes, I trust my mom way more than I do the county clerk with potentially knowing my vote. So ideally, I think it would be best if I don’t vote electronically unless or until the whole procedure is upgraded and everyone votes electronically. I think it would be especially cool if the voting machines could work like the iPad does in that everyone could use the same machine, but when I walk in, someone would just switch it to voice mode for me. Or better yet, the machine could be so simple that I could switch it to voice mode myself. Or you know what would be coolest of all? The paper that the ballots are printed on is thick like braille paper. Why has no one ever tried sticking a ballot in to a braille writer and brailling the names of each candidate with a braille dashed line which I could complete with a pen or crayon like I did for worksheets and standardized tests in elementary school? Well, I do know why it hasn’t been done. Again for it to be fair and secret, every ballot would need to have print and braille on it, and given that braille is expensive to produce, it would be pretty impractical. But if we lived in a world where cost effectiveness didn’t have to be taken in to consideration, that’s the option I would vote for.

     Finally, while some people like to keep their vote a secret, especially from their family, I don’t mind sharing who I voted for and in fact, I enjoy the interesting discussions such a question can initiate. The campaign office that called the Thursday before the primary and specifically asked to speak with me will be happy to know I voted for Rick Santorum. Given my strong belief that everyone should be required to pitch in for health insurance, and the fact that I am fed up with the negativity of the whole republican party in general, I will probably vote for Barack Obama in November, but since he is the incumbent and will be the uncontested nominee for the democratic party, I felt  I would be wasting my vote if I voted for him in the primary. He will be on the ballot in November no matter what. But if Barack Obama is defeated in November, I would rather Rick Santorum be president than Mitt Romney. This is not to say I agree with everything about him. Especially worrying is his statement that the United States shouldn’t apologize for burning the Koran, as such disregard for other religions wouldn’t help our already strained relationship with these middle eastern countries. But I like that he ran his campaign with much less money than Mitt Romney and given that, he seems like he would be a lot more attuned to the needs of the 99 percent. More research is needed on my part before November, but given what I have observed so far, that is where I stand. (Of course, since then Rick Santorum has suspended his campaign, so I still ended up sort of wasting my vote which means that as a pundit said on the news last Tuesday when Rick Santorum’s withdrawal from the race was announced, barring a political earthquake, Mitt Romney will be the republican nominee).

     But I should mention that while I don’t mind if my vote is not a secret, something I have already started to think about that I will need to worry about in the future is who I can trust to help me vote when my parents get to a position where they cannot take me to the poles anymore. My parents and I actually have voted differently in a couple elections and before filling out my ballot, they always reassure me that they would never ever do anything dishonest with my ballot. They are the kind of people that can be completely trusted. But given how polarizing politics has gotten, especially in my state, I honestly wouldn’t put it past anyone else, even the pole workers to take advantage of my blindness and essentially vote twice, while cheating me out of my vote. Talk about the perfect crime! Since voting is done in a private booth, just the blind voter and the assistant, no cameras allowed and no other witnesses required, that would be it, as under these circumstances, the “assistant’s” odds of not being discovered are excellent! Again, given how polarizing and dirty politics has gotten, I cannot be the only person who has thought about that. Around every election which brings back this thought, I laugh to myself as I imagine trying to casually engage my friends in political discussions someday to pick up from their views who will probably vote the same as me and thus be trustworthy and conversely, whose offers of ballot assistance it might be a good idea to politely decline. If there were ever an election in which for some reason I wanted to vote for a democrat in one race and a republican in another, I might look for someone who is so out of touch with politics that they would be impartial and thus most likely trustworthy, or bring an entourage to the poles with me, call one person for each part of the ballot while making sure the backs of the others are turned!

     But in all seriousness, when the time comes for this to be a concern, I absolutely will fight for an accessible voting machine, not because the right to a secret ballot is a big deal to me but because as you can see, having confidence that my ballot is in fact being marked the way I want it to be is. I would be curious to know if other blind readers live in precincts with accessible voting for the blind, or if, like me, you must still count on the decency and integrity of your fellow man? Have any of you ever discovered somehow that someone you trusted to help you vote wasn’t honest with your ballot? If your precinct has accessible voting equipment, did you have to ask or fight for it, or was it something your precinct thought of on its own? Are the machines your precinct chose easy to use or could they be better?

     Actually, now that I think about it, I will be graduating college in less than one month and since I have no job lined up yet, I will literally have all the time in the world. So even though my trustworthy parents will most likely be able to help me vote for many more years, this might be the best time for activism.

     I heard a wonderful saying once that goes something like, “if you want change, you must be the voice of change.” This is definitely an area in which I would like to see change because as advanced as our society has become in so many other areas, I really shouldn’t have to place my trust in anyone at the poles, even my parents.

     Exactly one month from today will be “the first day of the rest of my life.” In the month leading up to my high school graduation, I remember being on top of the world, glowing with the anticipation of walking across the stage, holding my diploma and hugging all of the teachers and friends who made everything possible one more time. What I failed to think about was the day after the party. I never realized how significant a part of my life high school was until the day after when it occurred to me that it was all over. While my parents cleaned up after the party, I remember walking around like a zombie. My grandma stayed in town the week after my graduation, and we did some fun activities like taking a walk on the lakefront and baking cookies, but I remember feeling in need of a purpose. Part of me worries that this feeling will be even worse on May 14, partly because I actually grew attached to more people at my college than I did in high school and because as I mentioned in “Living on Easy Street”, I am not just transitioning to a new school after this graduation, but a new world. For awhile, my fear of this lost feeling the day after made me consider filling out job applications this semester and writing that I was available to start May 14. After taking a deep breath and talking to Mom, I realize that I will want some transition time before starting a new job. But I will definitely need some sense of purpose beyond relaxing on the lakefront. So readers, if I write a really depressing entry on May 14, feel free to remind me of this entry. After all, using what I have learned in college about research to arm myself with information about voting rights and accessible voting equipment and then using this information to contact my representatives and be the voice of much-needed change in my area would make for a productive, exciting and purposeful “first day of the rest of my life.”

Blogging Against Disablism Day 2011: Raising Awareness about an Inaccessible Information Age

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.

What Does Seeing Feel Like?

Hello readers. Last week, I was on Spring break, a much needed break I might add, especially because for some reason whoever makes the calendar decisions for the college decided to make spring break two weeks later than it was my freshman and sophomore years. Although I have a lot I could talk about, especially regarding my search for an internship which is required to graduate from my college, as the subject indicates, I feel inspired to talk about something entirely different that has been on my mind the last couple months.

     I will never forget how One day–I think it was when I was eight or nine years old–my mom and I were listening to the radio when there was a commercial for some kind of eye procedure to restore vision. “Nothing is more precious than your vision,” the commercial declared. At the time, this declaration didn’t phase me, I think because I was too young to understand the shallow implications of such a remark, but perhaps also because since I have been blind since I was six months old, being blind was normal for me, something I had adjusted well to and was perfectly comfortable with. Thus, I already knew this commercial was shallow, even if I was too young to articulate it. But fearing that my self-esteem might be affected by such a superficial statement, I will never forget Mom turning down the radio and having a talk with me about that commercial, pointing out how silly such a statement is when I am perfectly happy without vision. My acceptance of blindness, made even stronger by this talk, is still as unwaivering today as it was when I heard that commercial. Sure there are the occasional times where I will feel left out when I hear sighted people raving about a spectacular full moon or something. There are even occasional episodes of feeling sorry for myself when I have to make a special trip to campus during winter and summer breaks to buy my textbooks weeks in advance and get them to the Disability Services office so they can be scanned, when sighted people can go to the bookstore the day classes start, pluck them off the shelf and they are in business. But the vast majority of the time, the fact that I cannot see is insignificant, overshadowed by all that I can do. In fact, I love to point out to people that there are advantages to being blind.

     First and foremost, being blind allows me to have a guide dog, who is also an unofficial therapy dog whom I can reach down and pet when classes are boring or stressful, and whose mere presence brings smiles to other students who miss their dogs back home.

     When the power goes out and the sighted world panics because it is dark, I can go right on reading my braille book or walking around like nothing happened.

     While sighted people step outside on a cloudy or overcast spring day and complain about the dreary weather, I view it as gorgeous weather if it is warm and birds are singing.

     Sometimes I think I relate to people on a deeper level than sighted people can because I don’t know or care whether they might be fat, wear clothing that sighted people deem unflattering, or have unusual hair styles or unattractive tatoos. Instead, in the words of Martin Luther King, I think being blind allows me greater freedom to judge people solely “by the content of their character.”

     Being blind also means I have no insecurities about my appearance. Well, my mom has taught me that I have to at least brush my hair, pull it back so it is not hanging over my eyes, and wear clothes that match before leaving the house because the reality is that it is a sighted world where I will be negatively judged for looking like a slob even though I am blind. But while sighted women spend hours getting ready in the morning, fretting about what clothes to wear or standing in front of the mirror complaining annoyingly about how terrible their hair looks today, I can be showered and dressed with hair combed in twenty minutes. If I shower the night before, I can be ready in five minutes. And when I go clothes shopping, (which is not very often because it doesn’t bother me to wear the same jeans for years if they may look worn out but still fit), I don’t step out of the dressing room like my sister and ask Mom “does this make me look fat?” in a whiny voice. Instead, I ask myself “is this comfortable?” If I determine the jeans are not comfortable, even if Mom or Grandma thinks they look cute on me, I refuse to let Mom or Grandma buy them. I have two sweaters that I wear more frequently than my other shirts and sweaters because they are especially soft and comfortable. My mom has pointed out a couple times that sighted people sometimes find it weird when people wear the same clothes too often, but I don’t care what people think!

     I also enjoy being an ambassador for the blind, answering questions from my sighted friends about braille and how I accomplish tasks without sight. At my college, there is a business class on diversity in the workplace, and every semester the course is offered, the professor who teaches it invites me to give a presentation to the class on blindness and how with just a few adaptations like screen reading software, blind people are just as capable as anyone else. (I will be doing another one of these presentations on May 13). After I talk a little bit about the adaptations I use, I open up the rest of the presentation time to questions, and one question that is always asked is “if technology developed that allowed you to see one day, would you take advantage of it?”

     What I have always told them is something on the order of “since I don’t remember when I could see, it is not something I miss. I suppose sometimes I wish I could get my sight back for maybe ten minutes, just to know what it is like to see, and to have a basic understanding of what colors look like. But I have been blind so long that getting my sight back would feel strange.”

     I will probably use this same response in my presentation this year, so as not to arouse concerns about my self-esteem and confidence as a blind person. But the truth is, just this year, I have noticed that in quiet moments, I think more about my blindness, and long to see more than I used to. This could be a result of my search for an internship, where I am learning that the real world isn’t as friendly and accommodating as school has always been for me. (You wouldn’t believe how many internships require a driver’s license, photography skills or proficiency in some graphic design computer program.) It could be due to the fact that Republicans are in power again, so it will be awhile before stem-cell research will be funded again. But shameful and ridiculous as it sounds, my longing to see really got going after hearing a news story about a Catholic church in my home state that is believed to be the site of an apparition of the blessed mother Mary to a nun, and that continues to be the site of modern miracles. The story mentioned a person who came in to the church wearing crutches because of a leg injury, who walked out of the church without crutches.

     I have listened to a couple clips of televangelists supposedly performing miracles, and found them revolting even before I learned that most of these “miracles” were later proven to be merely psychological, and that they were not done in a Christian spirit as evidenced by the lavish lifestyles they enjoy with money paid to them by desperate people. Therefore, I have never, and would never waste time or money on these charlatans. I have heard about other churches where miracles occurred in far away places like Portugal. But after hearing about this church so close to home, I had this strange sense of excitement, and an urge to visit this church that I have never felt before. It wasn’t an all consuming urge: I have had to manage this excitement very carefully because my parents are very perceptive and I don’t want them to think I have gone nuts. I go about my school work without a word, and when my parents occasionally mention taking Grandma to visit this church, I am very careful to be nonchalant and not let on in the least how much I want to visit this church too. Even casually mentioning with a straight face that I want to visit this church would look very suspicious since ordinarily, I complain about visiting largely visual attractions like churches and museums. But late at night when I am lying in bed waiting for sleep, when I am home alone or when I am walking on the treadmill, that is when the excitement consumes me. That’s when I start asking questions in my mind.

     What would it be like to stand on a hill or balcony and be able to see for miles and miles? I cannot stretch my arms and touch things miles and miles away. In the summer, Milwaukee has a huge festival with fireworks that can be heard from our house which is about a half hour drive from the festival grounds. But ordinarily, I cannot hear things going on miles away. So to be able to see for miles and miles is something I cannot even comprehend.

     What would it be like to go for a run on a glorious spring day with both arms swinging at my side and not have to hold on to a cane, dog harness or the arm of a sighted guide? Once when I was in seventh grade, I went to school without my cane because I had an evening activity the night before and left it in the car that Dad drove to work. I remember Mom getting upset with me for not bringing it in, and my teacher asking me how I could forget something so essential for my safety. From then on, I became more responsible and made sure to always bring my cane in from the car because although at the time I had the attitude of “what’s the big deal? I made it through the hall fine”, even I had to admit that walking through halls as chaotic as the halls at my middle school without a cane wasn’t smart. But there was another side of that experience that I didn’t dare admit to my parents or teachers, but which I remember fondly. It was a feeling of liberation! Of course, it wasn’t the true experience of being sighted: my hands may have been free, but I walked very very slowly and cautiously, knowing that if I got hurt on this little adventure, I would be in huge trouble. But just having both hands free was exhilarating to the point that ever since, I have always wondered if running hands free like sighted people do would be just magical!

     What would it be like to just walk in to any store or building and orient yourself to its layout instantly? Sighted people have told me about situations when they got lost driving, and even walking through big buildings. But for them, it seems as though getting lost is rare, and when they do, they find their way back pretty quickly. Simple routes to the buildings on my college campus that my peers probably learned within a day or two took me months of orientation lessons, and while I will have to ask for assistance every time I go to the grocery store, it amazes me how my parents can go to a grocery store they have never been to before and just instantly know where to go for milk or bread.

     What do colors look like? Just out of curiosity, I looked blue up in the dictionary, which defined it as a color intermediate between green and violet (really helpful), the color of the sky on a sunny day (a beautiful image), but also the color of someone’s skin when they are cold or have difficulty breathing (an unpleasant image). How much more abstract can you get? Adjectives related to touch like describing something as smooth, cold, or prickly, or adjectives related to taste like sweet, salty or bitter are so much more concrete than colors seem to be. But maybe that is only because I don’t remember what colors look like, and someone who cannot taste would find sweet, salty or bitter to be abstract and mind boggling. But I long to see colors and make sense of them once and for all, and determine for myself whether blue more closely represents the sky or a sick person.

     Would my personality and interests have been different if I could see? If you were to ask me the three activities I hate most, they would be going shopping, going to museums and going to sporting events because all these activities are so visually focused and thus excruciatingly boring for me. A lot of sighted people I know love these activities, but I have also met people who can see who find these activities boring. Would I be in the camp that enjoys these activities if I could see, or would I still find them boring?

     And ultimately, as weird as this will sound to sighted people, I simply want to know what seeing even means. Put another way, what does seeing “feel like”? I have never been good at articulating to people what I mean by this question, but let me try again. Maybe I should explain by using something I do understand like hearing.

     Elementary school science textbooks and the dictionary describe sound as vibrations that travel through the air which are perceived by the ear. But this definition I imagine would be so incomplete to deaf people. I am listening to the radio right now, and of course a deaf person could touch the radio and feel vibration coming from it. But when the vibrations reach your ears, they are so different. Touching a radio that is turned on would allow a deaf person to know what vibration is, but sound is so much more complicated than that, with so many intricacies like high voices, low voices, intonation, dialect, instruments and harmony, which I have absolutely no clue how I would explain to them. But answering the question of what seeing means is probably just as vexing for people to explain to me, especially because the dictionary defines seeing as perceiving something with the eyes through light and I don’t even know what light is. Indoors I cannot tell whether lights are on or off. Outside, I can tell when the sun is out because the heat from it hits my eyes, but in the same way that music is so much more complicated than just vibration, I know light is so much more complicated than the sensation of heat. But in the same way that I have no clue how to explain music to a deaf person, sight is so complicated that sighted people have no idea how to explain it to me. Now that I think about it, it is occurring to me that maybe the inability of sighted people to explain this to me is not because they don’t understand what I mean by the question but because it is an experience that simply cannot be put in to words, and thus I should resign myself to the reality that I will never fully understand it. Yet it is something I have always longed to understand. (Does that make any sense or does your head hurt now?)

     When I am not asking these kinds of questions, I am dreaming of simple everyday activities that sighted people take for granted that I have always wanted to do.

     I have always wanted to learn to read print. One time when I was younger, I wanted to see if I could pretend to be sighted, so I picked up a print book, opened to a random page, held the book right up to my eyes and moved my head side to side, imitating how I move my fingers side to side to read braille to look like I was “reading”.

     “That’s not how sighted people read,” my dad said with a chuckle when he saw me and sensed what I was up to.

     That is when I learned that sighted people don’t hold books right up to their eyes and they don’t move their head. (Occasionally, I will still pretend to read this way just to be funny). But seriously, how do sighted people read? I have heard the expression “hunched over a book” and indeed when students used to read out loud in school, I could tell their face was close to the book because they sounded like they were talking in to the table. But still, the book isn’t held right up to their eyes. I have felt raised print because the type of printers used in one of the computer labs at my college raises the print ever so slightly. I cannot read it by any means because the letters and lines are so tiny and close together, but if I cannot distinguish the letters by touch, I cannot fathom how sighted people can distinguish them without holding the page right up to their eyes, or how they move their eyes across the page without moving their head. I want to find out, and then I want to throw a paperback novel in my pocket to read on a beach somewhere instead of having to haul a giant backpack required for the same book in braille. (Nowadays, I download most of my books from bookshare.org and read them on a special computer with a braille display, but I don’t feel comfortable taking this computer to places like the beach because if sand got in to the braille display somehow, or a mishap caused it to get wet, repairing it would not be cheap).

     I want to look at pictures of three-dimensional objects to understand once and for all how I was puzzling over a tactile drawing in my high school geometry book for hours one evening going “what the heck is this?” when Mom, with barely a glance said “that’s a mailbox.” Then I want to go to town with blank paper and markers and see if my lack of artistic ability was only because I was blind.

     I want to see fireworks light up the sky on the 4th of July and finally understand why sighted people are so thrilled by them when to me, they are just obnoxious noise. I want to know what is so spectacular about Christmas lights that sighted people will risk their lives climbing trees to install them, and make special trips to see them. I want to understand why sighted people rave about the beauty of sunrises, full moons and sunsets.

     I want to watch a movie like Avatar which won an Oscar and which sighted people everywhere I went were raving about the stunning visual effect. Then just once, I want to watch a scary violet movie to understand why so many people talk about having nightmares after watching them. I have listened to violent movies with lots of gunfire sounds, but they never gave me nightmares and I know it is because the visuals convey a lot more than the mere sound of gunfire.

     I want to learn to write print. I have a little bit of knowledge about what print letters look like because in elementary school, I discovered that all the classrooms had both braille and giant raised print letters on the plaque indicating the room number. In elementary school, the procedure was that the classroom teacher would escort us to our “specials”, like music, art and gym. It wasn’t uncommon for the teacher to get us to the door of these classrooms a little early when there was still another class finishing their lesson. So while waiting outside the door, I would push to the front so that I could teach myself print by matching the giant print letters with the braille letters below them. My braille and orientation instructor also taught me how to write a few letters and sign my name. But I never learned to write all of the letters, and the letters I can write, I never mastered to the point that I could trim them down to fit in the minuscule spaces between the lines of spiral notebook pages. Oh, and while practicing writing, I want to sit in a classroom desk, rip a page out of the notebook, crumple it up and flick it across the room to land perfectly in to the garbage can, a stunning display of hand eye coordination that never ceased to amaze me when I heard sighted students do it in school.

     Then once I have mastered writing in a notebook, I want to take a pen and notebook out in to the woods to meditate and write while sitting under a tree. I don’t feel comfortable taking my braille computer out in to the woods for the same reason I don’t feel comfortable taking it to the beach. If something happens to a pen or notebook after all, sighted people can just run to Walgreens and buy another one for 50 cents. But even if I were to take it out in to the woods, it would spoil the peaceful atmosphere. I know this because when I went to an earth keeper’s camp in fifth grade, we had to find a quiet place in the woods to keep a journal, and while the other students could write in complete silence, my typing on the braille writer seemed so loud it probably woke up sleeping animals for miles around.

     I want to have enough of an understanding of the capabilities of vision that I will quit asking stupid questions in a futile effort to understand. For example, in sixth grade, I remember asking my mom questions about how far the eye is capable of seeing and she said that people can see until vision is blocked by an obstruction like trees or buildings. “So let’s say you could cut down every tree on earth, and knock down every building on earth. If you did that, essentially getting rid of obstructions, could you stand on the tallest mountain and see the whole earth?” I asked. “Well no,” she said, pointing out that would be impossible just because of how the earth is shaped. I have never heard little sighted children ask questions like this which means it is probably something that is automatically understood by even the youngest sighted people.

     I want to gaze at my reflection in the mirror, at first just to marvel at the concept of seeing your own reflection and make goofy faces at myself like a baby discovering mirrors for the first time, which in a sense would describe me if I were to get my sight back. But then, I want to use the mirror to be my own judge of my appearance. My family and friends tell me that I am beautiful especially because of my naturally curly hair, but I know a lot of sighted people who are told they are attractive but don’t like their own appearance. So I want to know how I would perceive myself if I could see what I looked like. I want to know what my tastes would be in terms of clothing and hair style. Clothes shopping especially is so subjective, with Mom and Dad constantly disagreeing about whether clothes look good on my figure or whether they are “old lady clothes”. So what would I say about the clothes my parents have always picked out for me if I could see them?

     Finally, I want to know what the members of my own family look like, and how my features fit in to the genetic equation. This question too is so subjective. Once when I asked my parents whose features I inherited most, I think my dad said I inherited a lot of his features, while my mom said I had more features in common with my brother than either parent, noting that despite the fact that my brother and I are nine years apart in age, we look identical in baby pictures. Actually, of all the things I have mentioned in this entry, I think this is what I long for most of all, and I must confess, I desperately hope that science will develop a way for me to see while my parents are still alive. So much of the banter at family gatherings is centered around pictures and discussion of physical features, and it is at these events that my blindness really hits me and I feel left out. I have no idea what I look like or what anyone in my family looks like, and thus sometimes I feel like I am missing a piece of my identity.

     Thinking about all these things I would love to experience kind of reminds me of the fantasies people have when they think about how wonderful it would be to win the lottery. But in both situations, we both know that will most likely never happen. Actually, the odds of winning the lottery are probably better than the odds that some miracle at a church will restore my sight. It’s not that I don’t believe in miracles. Catholics do believe miracles can happen and scientists have validated miracles bestowed on people after visiting holy sites or receiving blessings from popes or saints. But the very definition of miracle is that it is a surprising extraordinary event and thereby is not something that everyone has the privilege to experience. If it were, everyone with disabilities would have flocked to churches to be healed and there would be no handicapped people in the world. Of the miracles I have heard about, they have all been bestowed on people who either didn’t believe in God to turn them in to believers, or on devout believers like nuns. By these standards, there is nothing special about me and thus no reason for me to be deserving of any miracles like this. There is also the fact that Christians believe God is all-knowing and therefore he will know my self-centered purpose if I were to visit this church, I am ashamed to admit. But more importantly, Christians believe that everything happens for a reason. So maybe I was meant to be blind so that I could teach people how to look at life in a positive light, to see it as a lovely day even if there are clouds in the sky, or show employers that you don’t have to be physically perfect to be a contributing member of society, or teach people that life is too short to spend hours in the mirror agonizing over physical appearance and that there are more important questions we should be asking than “does this outfit make me look fat?” As I mentioned earlier in this entry, I enjoy this ambassadorial role, and although I would like to know what I look like, it would be a shame if I was given the gift of sight again, only to use it for shallow purposes like this. Thinking rationally about these things usually allows me to stay in touch with reality and all of the things I have expressed a longing to experience, and all of the concepts I have longed to understand, have stayed in the dream realm as unlikely to come true as it is unlikely my family will win the lottery. But when it really gets scary is when I start thinking about the practical implications of such a miracle. When my thinking gets this far, I start to wonder if it would be better that I not visit this church because as hard as I would try to keep myself grounded and not expect a miracle, I worry that after thinking about it with such thoroughness and excitement, I would feel let down and devastated if I walked out of that church no different than when I walked in.

     In the same way that my parents get carried away discussing how they would use their lottery winnings first to pay off all the bills, and then live out the rest of their days quietly in a modest house, in a community where no one knew them to avoid being scammed or robbed, I think about how I would react if suddenly, I could see. I am sure I would be so shocked that my first instinct would be to just go hysterical and tell everyone about the miracle. But then it has occurred to me that in the same way that lottery winners wouldn’t want to announce their newfound fortune to the whole world as then everyone would suddenly pretend to be their friend, I would probably want to keep this miracle quiet too to avoid becoming the object of a media circus. My parents are all about keeping a low profile so although I have never discussed this with them, I am sure they would say that every effort would be made to ensure my space and privacy. But let’s be realistic. If a person walks in to a church blind and walks out with vision restored, and the person has a condition that modern science has yet to find a cure, a media circus would be inevitable and after being granted such a miracle, I would want to spend my time out exploring the world with my newfound superpowers, not in some science laboratory undergoing tests to determine if this miracle was real. Even if the media never got wind of this miracle, I might want to live a secret life and keep this miracle quiet even around my parents who as wonderful and well-meaning as they are, would go ballistic with amazement and ask me all kinds of questions. I would tell them eventually of course, but maybe a couple weeks after the fact so that when they do go crazy with shock and amazement, I have had time to process life as a sighted person. Being that I have been blind my whole life, I am sure I would have no problem acting blind when my parents were around, and then letting loose to explore the world while they were running errands or something. (Haven’t there been movies written with this kind of plot?)

     But as my dad says when the rest of the family talks about the practical implications of winning the lottery, “why are we even talking about this?” As I mentioned before, miracles are so named precisely because they are rare, and I believe there is a purpose for me being blind.

     Judging by the fact that when we are doing group activities in school and I will spot someone’s notebook on a desk and caress the tiny wrinkles in the page made by their writing with admiration, and they say “oh that’s just my notebook” moving it because they think it is in my way, it could certainly also be noted that sight only seems amazing to me because I don’t remember when I experienced it, and that my amazement with sighted people is no different than the amazement expressed by sighted people when they see me typing on my Braille computer, something which to me is just ordinary. So perhaps what I am trying to say with this long wrambling entry is that there are so many reasons why I would love to see someday which can cause me to get carried away by thoughts and fantasies and dreams of a miracle. But writing this entry has helped me sort out my thoughts and realize that there are also so many reasons to be happy with the purpose God has given me as a blind person. If I am able to see one day, it would be exciting. But until then, I can accept staring longingly over a figurative fence in awe and wonder at the sighted world while sighted people stare back in amazement of me as the way my life was meant to be.