Tag Archives: blindness

You Just have to Understand

10 Saturday Oct 2015

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You Just Have to Understand

Today, some friends and I had a discussion about whether or not to self-identify as a person with a service dog, when making arrangements for rides in taxis or services like Uber. Transportation companies in particular have a long history of illegally refusing rides to people accompanied by a service animal. For the purposes of this journal entry, it’s important to know, that under the Americans with disabilities act, ADA, a service animal is a tool, used to mitigate a disability. In my case, a guide dog. Now, of course, I don’t think of my dog as a tool, but under the law, that is what she is. My dog has no legal rights beyond the right of any dog, but *I* have the right to be accompanied by my mobility tool in any public accommodation—provided my mobility tool is under control and behaves properly. Yes, shocking maybe, because few people seem to know this, but a person with a service dog can be asked to leave with the dog, if the dog is not under control. But for the law, the dog is the same as a cane or wheel chair.

In the course of the discussion, some friends said they always let taxis or other services know they are accompanied by a dog, as it will save possible hassle and or because it’s “the polite thing to do”. I am on the other side of the fence, as any who read this might guess. I will not give advance warning. The ADA has been in existence for twenty-five years now, and there is absolutely no excuse for anyone to disobey that law or to expect me to tolerate their breaking it. Oh, did I forget to mention that the ADA specifically states that a person with a disability may not be forced to self-identify? This is why those of us who use service animals are not required to carry identification or certification for the dog, and it is why it is expressly forbidden for places or business of public accommodation to require that we give advance notice. Just as it’s illegal to expect a person of a different race or gender to self-identify. So why do so many people with disabilities still think they have to do it? I’ve been thinking about this all day, and here’s what I think. Besides the fact that most people still don’t think of disability as a minority but rather a medical or charitable situation that is?

If we are born with a disability or become disabled very young, we are taught from our earliest age that we should not make waves.

“Oh, Honey, I know it’s upsetting that they treated you this way, but you’ve just got to understand. They don’t know any better. They’ve never been around anyone who is blind, deaf, in a wheel chair, … Be patient, give them time. They just have to get used to you. You just have to understand.”

Bullshit!

Why are people with disabilities the only minority group who has to just understand and be patient? For the rest of this article, I’ll just refer to my blindness, but this applies to any group with disabilities.

Let’s try a few similar scenarios as the one I just wrote. How would these go over?

“Oh dear, you’re African American, and you’re upset that the white employer over there wouldn’t give you a job? Oh Honey, you just have to understand. That white guy just isn’t used to being around people with dark skin. You’ve got to be patient. Just let them get used to you. Don’t get upset. You’ve just got to understand.”

Um, sure, and we all know our history, and we know how long our African American brothers and sisters had to fight attitudes like that! What would happen today if they were given that load of bull? What happens anytime a public official makes a boneheaded bigoted remark like that? Headlines scream. Why don’t the headlines scream for people with disabilities?

How about this situation.

“Oh Sweetie. You’re a woman, and I know you’re frustrated that men get paid more than you for the same work. And you’re so tired of beating your head against that glass ceiling, trying to get that promotion you so richly deserve. Oh Honey, I know it’s frustrating, but you just have to understand. Men just aren’t used to women’s equality yet. Be patient. Let them get used to you. Don’t rock the boat. Don’t fight it, don’t make noise, don’t raise bloody hell. You just have to understand.”

Yeah, right, sure. How well would today’s women tolerate that sort of attitude if it was stated baldly and publicly? Would the headlines scream again?

What about the headlines recently, when owners of Christian businesses refused to serve customers who are gay? Oh my how the headlines screamed! And yet, where is the screaming when day after day after day after day, people with service dogs are routinely refused rides from Taxi drivers or drivers of services like Uber, because it’s supposedly against their religion to be around a dog? Why is one of those situations wrong but the other is acceptable? Nope, no screaming headlines here.

Why do we hear those running for President, both Democrat and Republican, constantly reaching out to try to get the African American vote and the women’s vote, but they never vehemently proclaim their need for the disability vote. And even if they pay lip service to it, other than President Bush the first signing the ADA into law, what do they do, publicly? What do they do, what laws or bills do they help get passed, what media coverage do they get for the needs of the disabled? Ha! Do they even know or care that seventy percent and more of all working age people who are blind are unemployed? Do they care or know that of those who are employed, a huge percentage are under-employed in sheltered workshop type environments, receiving ridiculously below minimum wage salaries?

Where is the media? Where are the screaming headlines? I get news alerts from CNN every time the unemployment rate goes up and down, but is there ever coverage of the appalling rate of unemployment among people with disabilities? Nope. Do they think, like the general public, that people who are blind can’t possibly be productive employees, that maybe their disability will cause excessive absenteeism, that it would be dangerous for the workplace or the blind person to work, do they think we can’t find the bathroom or dress ourselves so how could we possibly do a job? Would it surprise them to know I have been consistently employed for twenty-five years? And yes, in a job interview once, I was asked how I would find the bathroom. And another friend who talked to a colleague of his about a possible job for me was asked if I would be able to dress appropriately. Oh boy. We have a hell of a long way to go, don’t we?

So, I think upbringing, societal pressure, and sheer exhaustion over fighting the same old thing over and over for a lifetime, constantly having to stick up for our rights and getting tired of it, I think that all plays into the attitudes. It gets so old having to beat our heads against the walls and remind the world that we are equal citizens. We’re not beggars at the feast. We don’t want to be objects of charity. We want our piece of the dream. And so some of us give up fighting. And I understand that, even if it isn’t my way. And may I be fighting till my last breath!

But honestly, after a lifetime of being told, “You just have to understand” I think it’s everyone else’s turn. For those who read this and shake their heads, thinking I just don’t get it, okay, it’s your turn, step forward, take a chance. You just have to understand!

If you’d like to read more on this topic, I highly recommend the following book.

MAKE THEM GO AWAY: CLINT EASTWOOD, CHRISTOPHER REEVE AND THE CASE AGAINST DISABILITY RIGHTS
By Mary Johnson

This book was published in 2003. Sadly, it was relevant and true then, and even more sadly, it is still relevant and true today.

Book Review, Dante’s Dilemma, by Lynne Raimondo

13 Thursday Aug 2015

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Another captivating story of psychologist Mark Angelotti. And so far, my favorite in the series. In this one, he’s got a new boss who doesn’t think so highly of Mark. He’s also given the assignment to be an expert witness for the prosecution of a woman who claims to have murdered her estranged husband after years of domestic abuse. But things just don’t seem to add up for Mark, and he’s off into another investigation and into danger. Someone definitely doesn’t want Mark to discover the truth.
Mark has a lot on his plate this time around. Not only does the mystery lead him round lots of twists and turns. Every time I think I’ve figured it out along with Mark, something undoes the whole solution and we’re back where we started. But along with the mystery, Mark has the new not-so-friendly boss, and a potential law suit with his ex-wife who isn’t so thrilled about the possibility of joint custody of their son. Mark seems in a better place personally in this book. He seems to have a better handle and acceptance of his blindness, and as usual with this series, Raimondo gives us a number of laugh out loud moments. Everything from Mark walking into his office furniture, mysteriously outside his office instead of in it, or the trials of trying to use a white cane on sidewalks buried in snow. As a woman who is blind, one of the things I love best about this series is that I forget about the whole blindness thing altogether. I tend to avoid books with blind characters, and if I read them at all, I read with part of my brain critiquing the portrayal of the blind character. But with the Dante series, it’s shown so realistically that I don’t think of Mark being blind any more than I wake up every morning and think, “good God, I’m blind!” The ways in which Mark performs the everyday things of life are so real and natural that I don’t even think of it as I read. I’m too caught up in the personality of Mark, his kindness, his sarcasm, his sense of humor. I’m too caught up in the mystery wondering how the author will surprise me this time. Mark’s blindness is in the background, just as it should be.
The mystery this time around was glorious, kept me guessing almost to the end. I thought I’d gotten it figured out. I thought I knew why the accused killer was going along with the prosecution. I thought I knew who was doing what, and at almost every revelation, I had been wrong all along! I generally figure out mysteries very quickly, so whenever I read one that surprises me, I’m so delighted, I just have to sit back and smile at the end, wishing I could read it again as if I hadn’t read it before, to see if I’d pick up the clues differently this time.
The author deals realistically and with great respect on the subject of long-term domestic abuse, a topic so heartbreaking and sadly still far too prevalent today. She doesn’t sugar-coat it, and yet, the rest of the story, with Mark’s compassion and humor, keeps the subject matter from getting too dark.
The Dante series is just plain fun, delightful. A good solid mystery, with a protagonist who is human and real, who makes you laugh out loud one moment and ache with sorrow for him the next. He’s a character you could meet on the street, someone with flaws and greatness, just a guy, and every man sort of guy, trying to make the best of his life, trying to give the best of himself and stumbling and succeeding just like all the rest of us. Seriously, I can’t rave enough about the series. This series isn’t so-called disability fiction, it’s a series of psychological mysteries with a hero who just happens to be blind.

I hate the UEB

29 Sunday Mar 2015

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so you may ask, what is the UEB. It is the unified braille code. For people who don’t know about braille, or much about it, braille is the way blind people read, with a series of raised dots. Each country has had its own style of writing braille. Braille takes a lot of room, so over the years, it has been modified to include a series of shortcuts, contractions to make braille a little smaller. Things like one symbol for words like the, and, with and on and on. One symbol for common letter combinations. in the word, “combinations” for instance, com is a contraction, as is the in and the ation. Even so, my braille bible is in 34 volumes and my full set of the Harry Potter books is in about fifty-five volumes. Braille is also quite expensive, because it uses so much paper!

so, some years ago, a group of people called the braille authority of north America, got together with similar bodies in the other English speaking countries and decided braille needs to be changed and updated to be more like print. And on top of that, all English braille should be the same. And because they think it needs to be more like print and that people don’t read hard copy paper braille, they think, but rather use electronic one line at a time braille displays instead of a whole page of beautiful delicious braille, they decided to do away with a number of the contractions and to change the punctuation we have used for decades.

now I ask all my sighted friends who read this, what would you think if someone came along and said they were going to change the way print looks and reads, if they decided the way you write it type it and read it had to change. if suddenly, that key below the L wasn’t a period anymore but was something else. Or if they were going to change mathematical symbols, things like that. Or if they told you real books are going away , and you can read on your kindle or iPhone anyway so you don’t need to worry that we’re going to mess up your print. How many times have sighted people talked about their love of holding a real book in their hands and reading. well, it’s the same for me. I can’t afford much braille due to its cost, but I love it. I love to put my fingers on a book and read!

anyway, the changes in braille will take place beginning in 2016, and some braille producers are already using the UEB. I’m angry and irritated. Now buying hard copy braille books will be even more costly because it will take much more room and more volumes. Maybe Harry will now be in seventy volumes instead of fifty-five!

well, I started this because I wanted to post the contents of an email I sent to some friends. but I got on a roll explaining braille and why I hate the UEB. But here’s another reason. Read on.

Here’s part of why I think I’m so angry about UEB.

I worked with a lot of deaf-blind people when I worked at the Lighthouse for the blind in Seattle. For those who don’t know, Seattle has a very large deaf and deaf-blind community and a lot of Deaf-Blind worked at the lighthouse. ASL is its own language as you probably know. People who are fluent in ASL don’t spell out every word, they use all kinds of shortcuts. And because it’s a language, it’s very common for them to write like ASL. Sure, many can write the way we write in perfect grammatical English, but it’s common for them to write in ASL so to speak. I spoke and emailed with several deaf-blind administrative assistants at the lighthouse and their emails had a sort of shortcut language most of the time. It was pretty cool. I tried to take a class in ASL at a local community college but the head of the ASL department told me they didn’t teach tactile ASL. Boo.

Anyway, if some well-meaning idiots came along and decided that people who are deaf need to change ASL to be more like regular spoken and written English, the you know what would hit the fan. There would be an uproar, an outcry of rage. The deaf community takes pride in who and what they are, in a big big way, and they’d never tolerate people coming along and deciding to change ASL to be more like print or spoken english.

Now of course, Braille isn’t technically a different language. But to my mind, a small group of idiots, made a decision quite a while ago that they were going to change braille. I know people protested. I certainly wrote a letter to BANA opposing it, but I don’t believe BANA ever meant to listen to our feelings and take them into account. Also, the blind community didn’t raise an uproar or outcry, not really, not boisterously, not so the whole wide world would hear. So, in some ways we let this travesty just happen. And it infuriates me that this small group of people decided braille has to be like print and therefore it has to be changed. After all, nobody bothers to read hard copy braille now that there are computers and braille displays. Never mind the expense and that fact that few blind people can buy those braille display in the first place. And these people decided for the whole English speaking world. talk about arrogance.

Anyway, that’s part of why I’m angry. It’s more than not wanting to have to learn braille all over again. It’s partly that BANA didn’t really have the right to do what they did, in my opinion, and we let it happen because we had so much warning, and we didn’t bother to come to the fight. I guess it doesn’t matter since such a small amount of blind people actually read braille. That last sentence was in mental quotes. So, because sometimes my idiotic sixties childhood comes back to haunt me, I boycott UEB. I refuse to learn it; I refuse to read it; I will not support it. I may cut off my nose to spite my face, but I’m okay with that. And my little protest won’t make a difference, except I’ll feel damn good about it. lol.