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How We Use Our Words

“Where there is No Vision, There is no Hope” –George Washington Carver

When viewed from the perspective of an ocularcentric world, this quote is thought-provoking. If we do not have an eye toward the future, we tend to have no future, which makes for a grim outlook on life. Considering the world is sight-oriented, saying one can have no hope without vision becomes problematic to those who do not understand the subtleties of connotation
and denotation. Once I did, I began a campaign against using the term “without vision” to mean “without sight”.

I first read Carver’s words when in elementary school. As a visually impaired child in a sea of sighted kids, this line made me uncomfortable. I didn’t understand the subtleties of connotation and denotation as yet; therefore, I believed he was saying blind people couldn’t have hope.

Unfortunately, as I grew into understanding the differences between sight and dreams. I also grew to understand that much of the population believed as I had as a child—no sight, no aspirations.

The solution to this dilemma is simple: People on the blindness spectrum are able to change how they describe their condition. Instead of saying we are “low vision” or “without vision”, we can say we are “visually impaired” or “without sight”. The differences are subtle, as language can be subtle, yet it can make the world of difference in how the blind or partially
sighted person is viewed by the world.

Carver is correct: without a vision, a view to the future, hope is difficult, to impossible to hold. For this very reason, using terms like “I’m without vision” or, as I’m beginning to see “low vision” meaning one is without sight, should be avoided. Those with not a pinprick of sight can have enough vision to change the world.

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Another “Blind” Book

I’m sure I’ve missed a few, and once and a while I come across a book with a blind hero or heroine. As you all know by now, I get into a rant about these. Why? Because most are terrible. OK, so far in my life, they are all terrible.

What makes them terrible?

The author doesn’t do enough research. They may do some, and not enough. They don’t use sensitivity readers. They end up propagating all the horrific stereotypes about blind people that make life difficult for the rest of us.

We do not feel faces.
We do not count steps.
We are well aware of what’s going on around us.
We do not pick out our guide dogs as puppies and train them. In some states, that’s not even allowed.

Of course we know of exceptions to these statements. These are exceptions that prove the rule.

But seriously, most people’s faces feel kind of greasy and one’s steps change with shoes and fatigue levels and so many more reasons why this is all impractical.

So what is the latest abomination?

Blind Embrace by Suzanne Lee.

No, I have not read this book. I am not spending money on it despite how much money I spend on books every month. I hate spending money only to want to toss the book across the room or return it or something else unpleasant.

So this book I ran across looks as trite as all the rest. Cheerleader is headed for LA for a modeling audition. (Shouldn’t it be New York, the seat of fashion?), but is in an accident and goes blind.

Honestly, can’t these supposedly creative people come up with something other than an accident to make someone go blind? Yes, it happens, and diseases of the eye are far more prevalent such as retinal blastoma, retinitis pigmentosa, LCA, glaucoma, macular degeneration…

But I digress again.

Worse, it seems to be a Christian novel. I have seen too many of these books—she can see people’s hearts through Jesus or some rot.

I know I used to give people snarky responses. “The first face I’ll see clearly will be the Lord’s.”

Gag.

I was such a fraud.

But I digress yet again.

I am just horribly appalled by the fact that this author says she is qualified to write the book because she’s a nurse and that helps her know all about what someone goes through going blind.

No, being a nurse does not give her special insight. To say so is offensive to those of us who have actually gone through it. No way can she know what it’s like. To say so is the height of arrogance and ableism.

In fact, I have found some of the worst ableists are medical people, which makes me even more suspicious of this woman’s qualifications to write a book about a blind heroine.

I did reach out to this author and respectfully ask her some questions about her research and why she chose to write a book about someone going blind, etc. No response.

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How Can We Ever Win?

I was reading a resource for blind job seekers. One advice given was to have a reader if the job application is inaccessible.

Excuse me? This is problematic on so many levels it’s appalling.

1: This attitude excuses the employer for having an inaccessible job application. Nothing excuses this. Job applications should be accessible to anyone. If it is inaccessible, the employer may as well have a sign that says, NO BLIND PEOPLE NEED APPLY

2: Expecting everyone to have a reader to fill out a form that is inaccessible is ridiculous. Not everyone has such a person around. I don’t. I especially didn’t during the pandemic. I have a virtual assistant that can help me with some things, and sometimes job applications are timely and she isn’t available because she has a job that pays better than I can so is a priority.

3: Not everyone can afford a reader to help fill out forms. Volunteers, you say. Sure. Try to find one. I have had volunteers sporadically over the years, and they’re not easy to come by. I never found one here. And again, we must consider that timeliness. And what about confidentiality? Do I want to give a
near stranger personal data about myself? Uh, no.

Somewhere along the way, people have gotten the idea that blind people all have someone who comes in and takes care of us. People think someone cooks for me (I wish), drives me where I need to go, and reads my mail. People with other disabilities get services paid by the state or other agencies such as
home health aides to help with household tasks not possible due to a physical disability. Deaf people have interpreters paid for when needed. But blind people get no kind of service provided for us for reading or anything else that requires sight such as filling out inaccessible forms. Why?

Because the forms shouldn’t be inaccessible. Yet agencies that should be advocating for accessibility in job applications are saying, “Get someone to do it for you.”

What I think of this I will put politely in two words:

Bovine feces!

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Job Hunting While Blind

One mistake I’ve made in my life is playing my cards too close to my chest. Yes, I keep hearing Aaron Burr’s song in “Hamilton”, and don’t want to be like him. I don’t believe in remaining neutral.

Nor have I been good at being vulnerable, which is part of letting one’s wants and needs be known. I want to come across as having everything together, possibly because, as a blind person, I am treated as though I can have nothing together. I have gotten the reputation as being a little uppity because of this.

I’m not. I’m actually totally vulnerable and mushy inside and not any more crusty on the outside than is a burned marshmallow.

But when one is vulnerable, one is also humiliated when one meets failures. I am not good at failure. I’ve been called a failure too often in my life for reasons which I will not bore you.

So, I’m putting this out there for the world to see.

A couple of years ago, I decided I needed to take a direction change in my career. I’m doing no good writing schmaltzy, if maybe fun too, romantic-suspense. I like it. I think it’s a quality line. It’s just no longer right for me.

Unfortunately, to do this, I have to kind of start my career all over again, which means starting at zero in the way of royalties and advances. Ugh.

As I dither over this, knowing Love Inspired will take more books from me, two things happened. First, my agent retired. Then my editor got promoted. I’m happy for them both. I’m not happy for me. I’ve lost an editor before. When someone who knows and loves your work moves on and you’re shunted to
another editor, it’s never good, no matter how much she loves your work, if she does. If she doesn’t, it’s a nightmare. I really don’t want to go through this again when I’m unsure of writing for the genre anyway.

So here goes:

I need a job.

I’ve been out of the traditional workforce for a long time. Too long. My skills are eclectic. I can write. I can research. I don’t have a communications degree, and what is a writer but a communicator? I am not a salesperson, and I am a good public speaker. Stages and microphones don’t scare me. I don’t have a
degree in teaching the visually impaired, yet I doubt any TVI out of grad school in special ed knows more about teaching blind people than I do. They may have some new and fancy techniques, and those are easily learned.

The problem is—75% of blind people are unemployed. Discrimination against blindness in the workplace is appalling. Part of the problem is technology. I have encountered several jobs for which I know I am qualified only to be unable to apply because the application is inaccessible. Other jobs say one must have a driver’s license. The ones like this that piss me off are the ones where a license is not necessary.  It just seems like a way to shut out certain people like those of us who can’t get licenses. One may have to do some travel and, hey, I’ve managed to travel around the U.S. and many countries without driving.

Another job required graphic design. A tiny part of the job and a reason to ding a blind person.

So, what do I do? Where do I go? I am willing to relocate with some exceptions.

So here I am, being vulnerable—while I carry out my plan to change my writing career, which will take a coupe of years at the least, and then after, since writing doesn’t really pay a living wage as a rule, I need work.

My vulnerable cry for help.

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Please Don’t Do It

I don’t review books often. To me, an author reviewing another author’s books seems vaguely unethical. I have broken that rule of mine here for two reasons—I don’t write in this genre, and these are books that should have been—but weren’t—written by #OwnVoices authors. Both are a case for, at the least, a sensitivity reader before publication.

Not If I See You First

Eric Lindstrom

Let me begin by saying that Lindstrom is a pretty good writer, and he did a  great deal right in this book, possibly more than most books written about a blind character by an author who isn’t blind. A few things taint the book.

Parker is the main character. We learn right away that she is blind and her father has recently died. We also learn that she goes out running by herself every morning. This is admirable, except for how she goes about it.

She leaves the house and walks a block plus crosses a street without using a cane. This is not only stupid, it’s dangerous. That she runs in an open field is probably okay, though, again, with no one around also seems a little foolhardy. Obstacles could be in her way that weren’t there the day before. But that’s the least of the issues.

Parker wears a scarf around her eyes like a blindfold. Besides looking freaky, it also is significant that she doesn’t seem to have accepted her blindness. She’s been blind for ten years, not ten months. If it’s such an issue, why isn’t she in counseling? Why isn’t she in counseling with the grief of losing her father?

Next, we learn she lives with her aunt and cousins. They moved across country so Parker doesn’t have to learn a new school or new house. We don’t know how they were able to make the move so quickly, and it’s probably not that important. What is important is that the assumption is that she wouldn’t be able to make the move because she’s blind. So do they also expect her to never go anywhere, to live in the same place all her life? She can’t learn a college campus or dorm? She can’t move into an apartment? By their thinking, she’s stuck because she’s blind.

Blind people move all over the country, even the world, going new places all the time and do just fine. To think we cannot is, frankly, an insult to ability and intelligence.

One thing I like about Parker is that she’s kind of blunt and snarky. I did laugh several times at how she confronts people. This is good. She’s not shy because of her blindness. She does talk about it.

She talks about it incorrectly. She says her eyes are closed. I looked this up because it’s not the first time I’ve read a book where the protagonist who is blind has her eyes closed.

For the most part, this is incorrect, from my research. People who have been blind all their lives, who have never seen, sometimes—emphasis on the sometimes—have their eyes closed because they never learned to open them. Most are taught to open them for societal norms. People who were once able to see still keep their eyes open even after they lose their sight. Parker could see for the first seven years of her life.

So, please, authors, do not propagate the myth that blind people have their eyes closed. Most do not.

Other myths Parker propagates:

She is easily startled by people coming up to her. Untrue. This is a myth. If we are grabbed we might jump, but we rarely startle just because someone  comes up and talks to us. This one really annoys me. It makes blind people look like meek little rabbits or terrified of the world because we can’t see it. We’re not.

Parker counts steps. PLEASE stop this myth. Blind people may count steps such as up and down stairwells in a new place. Other than that, counting steps is impractical. Fatigue, different shoes, having to go around obstacles can all change the number of steps. And who wants to waste brain power on remembering how many steps to everywhere one goes? And what do people think we do in a new place?

Back to Parker’s eyes—at one point, she refers to them as being “dead” and “useless”. A newly blinded person might feel this way. Someone who has been blind a while does not. One’s eyes are just one’s eyes. My standard joke is that I’m blind in one eye and can’t see out of the other. I know no one from either my personal or professional life, even newly blinded people,  who has ever thought of her eyes as being “dead”. They’re not dead. The connection to the brain has a problem or the retinas are damaged. If they are dead, they are removed and artificial eyes are inserted. A prosthesis that looks amazingly real. A dead eye is white and … dead looking. An eye that still has white sclera and a colored iris is not dead. Useless maybe.

In just plain storytelling, the plot is often rambling and incoherent. Parker has some emotional growth, but the attempt at a romantic conflict comes across as slapped in as an afterthought. Worse, the incident that drove Parker and Scott apart happened in eighth grade. Really? In four years you haven’t gotten over it? Sure it wasn’t nice what happened, but eighth grade boys do dumb things. Let it go for your mental health. And, really, they’d still be in love with one another after four years? They might be in love with what they remembered as love, but this stretches my credulity. Lindstrom would have done better to have it have been the year before. The whole situation would have been more understandable.

On the positive side, Parker is refreshing for a blind character, as she is not shy and self-effacing. Many other characters are great. Characterization is Lindstrom’s strong point, and, as a lover of YA fiction, I will probably try another one of his books. I just wish he had had a couple of real blind people read this one first, people who have been blind a while and accepted the condition as a characteristic and not a flaw.

Love And First Sight

Josh Sundquist

I couldn’t find this book recorded by the National Library Service for the Blind, which speaks volumes on its own. NLS is quick to record any book with blind characters. Curious, as a librarian friend found this one for me, I began to read about the book and the author.

 This seems like a novel intended to poke fun at blind people. The sixteen-year-old protagonist is in high school. It can’t be his first time in high school if he’s sixteen. He must be a junior or year late sophomore. Either way, unless he has been blind for a short time, he makes stupid mistakes even newly blinded people don’t make.

 We don’t get the impression his blindness is new; therefore, I can only conclude that Sundquist is aiming for slapstick comedy at the expense of perpetuating many myths about the ineptness of blind people.

 The kid gropes a girl on the steps. Unless he did it on purpose, no blind person with half a day of mobility training will do this. For one, his one hand should be holding a cane and the other at his side, not at a groping level. Next, if he brushes against a girl, he will pull away, not continue to touch unless he’s a creeper.

 Next he sits on someone’s lap in the cafeteria. I have never heard of a blind person doing this. First of all, navigating cafeterias is notoriously difficult; therefore, most blind students get some kind of assistance. If they don’t think they need it, then they are far more careful than to sit on someone’s lap. Unless one is incompetent, one does not sit on a chair until one makes sure it’s free.

Again, Sundquist is saying blind people are stupid and incompetent.

So, the boy then makes a classmate cry. Not sure why without more than the book jacket says, and it’s inexcusable unless he’s an insensitive jerk. Maybe he is. Maybe he’s just unlikable.

So then his friends lie to him about girl he likes being pretty. Great friends. And of course, blind people can never have attractive partners. This is a common trope all through literature.

 The final clincher is that the boy gets his sight back by some kind of miracle surgery. Of course. Another trope is that person can’t be happy blind, so must be healed to be a whole person.

 What makes this whole thing appalling is that Sundquist has a disability himself. So why didn’t he write about a high school with that disability? Why does he have to mock another disability and then heal it as though being blind means your life is incomplete. Most people think all people with disabilities need to be healed to be complete and happy. We would like to stamp out this thinking, yet here is someone with disability playing right into it.

 Next time, Mr. Sundquist, if you want to make fun of someone’s disability, pick on one for which you have actually done some research.

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Why I Fired My Physician

When I moved into my house, I had to find a new internist/family doctor. I liked my other one a great deal, but her office was just too far away. So, I found one nearby and easy to reach via public transit.

She was decidedly okay. Not great. Not particularly likable, but not dislikable  either, part of a large university health system practice. Her staff, however, was just stupid.

When showing me back to the room on my third visit there, the nurse shouted at me because I didn’t turn into the room she indicated. “Didn’t you see me pointing to that one?” she yelled, sounding quite put-out.

“Uh, no,” I admitted. “I’m blind.”

“Well, I didn’t know. You should have told me.” Still sounding pissed off.

Say what? There I am, pre surgery I had a year later, so wearing my pink-lensed glasses to protect my eyes from light, holding the harness of my Seeing Eye Dog—a harness that has “Property of the Seeing Eye” written on the back strap in pretty big letters (the harness belongs to the school, not the dog.)

She didn’t know what that meant. She lives in a major U.S. city and had no idea what a guide dog is or why someone would have one.

And so, this ignorance continued.

Last year, during COVID, I made a telehealth appointment because—hello! Pandemic? Their protocol was to have patients wait in their cars until time for their appointment. That way, which had no one in the lobby.

Mind you, this is December in Chicagoland. Mind you, I can’t drive; thus, I do not arrive in a car. The office is a mile and a half from my house. Easily walkable … in good weather. Dangerous when ice coats the sidewalks, which was the case. I wasn’t using public transit at the time because of that pandemic thing and no vaccination yet.

But my doctor insisted she wouldn’t count telehealth as an appointment and I needed to come in in person. I explained why I couldn’t. She wouldn’t back down. Mind you, I had nothing wrong with me; this was just the annual thing. If she wanted bloodwork, I could have gone to an immediate care center nearby my house. But, no, she insisted I should come in, even if I had to wait in freezing temperatures until my appointment after walking over a mile to get there.

This is called “Reasonable Accommodation”. Or they could have made an exception and let me come into the waiting room.

Thing is, their web site, their telephone hold announcements, and even their scheduling people say telehealth appointments are readily available.

And, of course, we can go for the ableist behavior. Yelling to me in the waiting room because, you know, when you’re blind you can’t hear either, I guess, since people do this. Doing this in a medical office means my HIPAA rights are violated, by the way.

Assuming, not asking, I can’t do something simple like walk next door,
because I can’t see. Grabbing my arm, though I told them again and again not to do so.

All in all, I was made uncomfortable and irritated every time I went there.

So, when I had a prescription needing a refill, a thyroid medication I can’t go without taking, the doctor refused to fill it because I hadn’t come in for an appointment.

I was vaccinated by then, so tried to make an appointment. Not for three months. Seriously.

So, when my prescription came due again, guess what?

You got it. She refused because I hadn’t been in for an in-person appointment. I had to threaten to report her to the Board of Medicine before I got my refill, when a simple look at my records would show her I had an appointment the next week.

I canceled it and got an appointment at a different practice. Let us hope they understand reasonable accommodation and what a guide dog is.

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We’re Still in the Stone Age as far as People with Disabilities are Concerned

When I got my first guide dog, back when the earth and I were young, we didn’t  have the ADA. We didn’t have the second Fair Housing Law spelling out to landlords that they had to rent to persons with disabilities and, yes, those pesky guide dogs too.

But now we have those laws If you listened to the insipid coverage given by NPR and other news outlets last year, you’d think all problems with accessibility for disabled people is over.

Counter those rosy reports to this incident, which also took place last year.

In truth, as people more and more claim their property rights, the laws are more and more eroded, and protections are lost. A bystander got in the way of me negotiation with a Lyft driver one day. The Lyft driver wanted to put my dog in the back of her SUV. No way. Not safe for my dog there. No, my dog rode with me. A bystander said, “It’s her car.”

No, it isn’t, not once she lets the public in.

And it’s not your property once you let the public in. If it’s your private home, but you open it to the public, for any stranger to walk through, disabled people and their guides are allowed.

When you have a theater, a beauty shop, a nail salon, a retail store of any kind, you are required to allow persons with guide dogs into your hallowed halls.

Rentals are a little different. The laws are precise and more complex depending on number of units, etc. Of course, I bought a house and live with the pains of home ownership to avoid the worse pains of dealing with landlords.

You’d think everyone would know that guide dogs are allowed in public spaces. Uber and Lyft have been sued and lost. Thousands of restaurants have been sued…and lost.

Yet in 2020, a man was not only denied access to a store in a mall in North Carolina, but the store personnel called the cops on him, and the cops threatened to arrest him if he didn’t leave.

Am I shocked? Not really. It’s happened to me. When I lived in Texas, I just quit going to malls because security guards followed me around, asking me where I was going, how long I intended to shop, etc., and generally making me uncomfortable and unwelcome. They were breaking the law. They were harassing me because I am blind and was using a guide dog. They tried grabbing my arm, taking hold of my packages, forcing me out the door.

I didn’t want to embarrass my husband or his high profile boss, so kept my mouth shut. I’m not sure I would nowadays. And I’m still reluctant to go to malls.

You know the black men who got followed around Eddie Bauer a few years ago? Yep, it’s just like that when I go into most retail spaces. In Brownsville, I had a beauty salon tell me I couldn’t bring my dog, Why? Did they think my dog would get hair on the floor?

If you ever see someone with a service dog being harassed, if you do nothing else, get the encounter on video and post it on social media so the world can become aware of how badly people with disabilities are treated in our society.

By the way, in the two times I’ve been to Europe with a guide dog, though I was in countries without protective laws for guide dog accessibility, the only place I was told not to have my dog in a place was because it was too small. She still accommodated me, putting me at a window table. The window was open and the sill low and wide. My dog was welcome to lie on that sill, still at my side.

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On Your Knees

I’m a little behind in posting. Lots of stuff going on here like me getting stung six times by a swarm of yellow jackets who had built a home beneath my deck and didn’t like me walking across it. A whole new look at trolls under bridges.

Then last Monday, we had a dead raccoon in our yard I had to figure out what to do with. You want no details about that, believe me.

So, I haven’t known what to write except a couple ideas that require more research than I have time for at the moment. Then this article popped up in my Facebook newsfeed Ableism: What to Know About This Form of Discrimination and I had flashbacks from something mentioned in the article.

I grew up in a pretty religious household. We were deeply involved in putting on retreats intended to convert people. I worked with the youth, being one myself. The whole thing was about peers. Peer ministries.

Most of the time, these things were fun. I met many interesting people. Unfortunately, I ended up on my knees too often. Way too often. Not because I needed conversion, but because people around me decided I needed to be healed.

A group of people would often gather around me and practically muscle me to my knees while they laid hands on me and prayed that my eyesight be restored. Humiliating. Embarrassing. Creepy.

I hated it. For one thing, my eyesight was never restored. I was then told I didn’t have enough faith. Why was my faith in question? Wouldn’t it be the faith of those who were praying that should count? Nope. It was always my fault.

At the time, people didn’t talk about bigotry against disabled people. We only had the Rehabilitation Act in our favor, which guaranteed an equal education. (Yeah, right, like that’s worked.)

So, I didn’t know that these people were being less than concerned. I tolerated their behavior because I thought they had good intentions.

They did not. Their message was loud and clear, at least it is to me now. YOU AREN’T GOOD ENOUGH AS YOU ARE.

I wasn’t acceptable as a blind woman. I had to be healed to full sightedness before I was an equal doing the praying, not being prayed for. This is ableism at its worst—letting the person with a disability know through seeming acts of kindness, that they aren’t acceptable as they are.

No wonder I became more and more withdrawn and shy the older I got. I was being told constantly that I was less than. I didn’t have enough faith to be healed; therefore, I didn’t really fit in the world of the faithful, the chosen, or whatever.

No wonder I have left the church.

As I grew older, I was told I wasn’t good enough to go into my chosen profession of teaching. OK, I was good enough with ability and academically; however, I wasn’t good enough as a whole because I couldn’t see well. Ableism in the hiring office. I went on job interviews where the interviewer spent the
entire time telling me why I wouldn’t want the job.

The article sited above is wrong in one aspect. I don’t know where they got their unemployment statistics, and they are much, much worse. Unemployment among blind people is 75%, not 12.5%.

And yes, medical help has not always been forthcoming in a proper manner because medical personnel treat me like a nuisance first and a human being second.

Do you look at a person with a disability and consider that they aren’t equal to you? Ask your heart in all seriousness if this is your perspective. This, ableism, is as bad as racism and thinking your race is superior to another. Just because you can walk or hear or see does not make you superior. It makes you
different.

Please cease pushing us to our knees because you think you need to pray us into changing for what you consider the better. Please stop pushing us to our knees to beg for accommodations to function in the world. Please stop pushing us to our knees to beg for work, for access, for a seat at the table of life.