Ableism Disables

When I was sixteen, I had a crush on a nerdy guy at school. I was a nerdy girl, so that was all right. But he had the courage or assholery, or maybe honesty to tell me that he wouldn’t go out with me because I was blind.

Ouch.

He admitted he was a jerk for that, and he couldn’t do anything about how he felt. Actually, he could have, but he wasn’t willing. I’d prefer he have said he wouldn’t go out with me because I had red hair (which I did until it started turning gray in my 30s).

That wasn’t the first time I’d been rejected. I’d never been chosen for teams in forming them for classes or just on the playground. Probably wisely. I could see some, but, in playing Red Rover, I was as likely to run into a person as their locked arms. And Dodge Ball? Not likely to dodge much. I could play
kickball, which is probably why I like baseball now.

But moving on.

I knew rejection. I handled it pretty well. I got mad or sad or indignant, then I moved on. Resilience we call it these days.

And this prepared me for publishing.

Yes, if you can’t handle rejection, don’t go into publishing. A few lucky people sell their first piece, but those are the exceptions who prove the rule. Many famous writers, we are told, faced rejections. Dozens. I’m not sure if they are true or urban legends.

My publishing journey is so complex I won’t go into it here. Suffice it to say, I faced much rejection. I faced acceptances and then rejection too. Example: two agents who rejected me after accepting me as a client, then rejecting me after learning I’m blind.

I’ve had two agents since I found ones who didn’t reject me. I didn’t make them rich, nor did they lose money on me. Especially not losing money. I dare say they have made money on me. In fact, because I’m still getting royalties on books they sold, they are still making money on me. The second one has
retired, and I don’t need one where I’m writing now, so I am currently not looking for a new agent. Maybe in a year.

The point is, I made sure these women knew of my blindness first. They liked my writing. They believed in my writing, my stories, my ability to sell manuscripts to be turned into books.

Their belief was not mistaken. To date, I have 26 traditionally published novels. I have four more that were published with alternative methods, only one indie published.

To say it was easy would be a lie. I faced many rejections. I faced editors who thought I couldn’t do the work. One even tried rewriting my entire manuscript and thought her version was better. I’m not being egotistical to say it was far, far worse.

But she rejected my original manuscript, when she was supposed to be editing it, as it was already sold for a lot of money, because she didn’t believe a blind woman could write a novel worth reading. This is not speculation; this is fact.

I don’t turn in perfect manuscripts. I don’t think any author does. But how many people have been told their manuscript was so bad the editor had to rewrite it, and it was bad because the author was a blonde, or had green eyes, or was too tall? Yeah, right that would happen.

And there she was telling me I should accept her version of my manuscript because of my “visual difficulties”.

That rejection made me hysterical. I cried for two hours or more. I cried off and on for days out of anger, out of pain, out of despair that this world would ever give me a chance.

My current editors and many others have. They knew me before they bought my books. They accommodate my technical challenges due to inaccessible software. They accommodate my life imploding and give me the time I need to work. Is it because they pity me? No, it’s because they don’t have to. For every author published are thousands of more wanting to be. They do it because they like my work and know that this is the right way to treat an author—meeting her needs whether she has a sensory disability, physical disability, or a mental health issue.

If more people would behave this way, 75% of people with disabilities wouldn’t be unemployed. If you don’t believe that number, go to  Disability Statistics and look them up.

We need more agents, editors, and employers to realize that people with disabilities can do the work and should have equal opportunities to gain employment.

If you are ever in a position to hire, please consider someone with a disability with the same thoughtfulness you apply to nondisabled people. Be part of the solution, not the problem.

In 1991—yes, I’m showing my age here—one of the major networks produced a show portraying a blind man as a bumbling idiot. Blindness organizations got together, went after the sponsors, and the show was dropped, but not before one of the actors allegedly said, “That’s how blind people are.” Harder to check rumors before things like Snopes.

I only ever saw a few choice clips from this show. They were bad enough. At one point, the blind man is hugging a coat on a coat rack thinking it’s the woman he loves. In another, he’s swinging his cane around, knocking glass objects onto the floor, as he makes his way around his place of employment. That is NOT how you use a cane and a blind person who can’t tell an empty coat from a real person has worse issues than being blind.

The only good thing about this show seems to be that the man is employed. With 75% of blind people unemployed, this is a positive indeed.

Later in the 90s, a friend called me about a movie she saw on TV. She was appalled and wanted to ask my opinion. One thing she mentioned was that the woman was getting assistance through an airport and:

1. 1. Was holding the dog’s harness while holding the person’s arm,
   2.  Was counting steps the whole way.

Two problems here. One is that we are trained to drop the harness the minute we take someone’s arm. Why? Because you can’t have two guides. Either the sighted person is guiding, or the dog is. The dog can get confused and start relying on a sighted person to guide rather than doing the work him/herself.

And the counting steps!  That sound you just heard is my primal scream. This is nearly as bad as feeling faces and takes me back to another portrayal of a blind person in an art form.

“Butterflies are Free” was first a play and then a movie. I was far too young to go to the movie when it came out, but I later in life received a recording of the play from the National Library Service for the Blind, a division of the Library of Congress.

The play shows a blind guy living on his own, against mommy’s advice, and spending his days playing his guitar from his loft bed. When asked how he gets what he needs, he explains that he knows how many steps to go from his apartment to the deli, to this establishment, to another establishment. Basically, this guy is living in New York City and going nowhere outside his block.

Until this movie came out, people thinking blind people counted steps was unheard of. I’d never been asked. My older sister, who is also blind, had never been asked.

Think about this when thinking a blind person counts steps: One’s stride is not consistently the same length. External factors like cracks in the sidewalk, ice, numerous moving obstacles like human beings, change one’s trajectory. You can think it’s fifteen steps from the corner, to the drugstore, and end up in an adult bookstore because you had to go around a bike chained to a parking meter, three tween girls trying out their new lip gloss, and a cup of ice someone spilled on the pavement.

The next day, you try again, and you are wearing spike heels instead of sneakers. You don’t have any obstacles to circumvent; however, you have a different stride because your feet hurt. This time, you end up in the liquor store right in front of your teetotaling great-aunt you hope will leave her fortune to you.

The next day, you are very tired from lying awake wondering why your carefully counted steps while on the arm of your mother aren’t taking you to the pharmacy, where all you want is a cherry Coke from their soda fountain, which is still in existence. You can hardly put one foot in front of the other. So, you turn after 15 steps and end up in a parking lot, where your confused ass is almost grateful to be run over by a delivery truck.

In short, counting steps just isn’t practical. And don’t you think we have better things to do with our brains than keeping track of how many steps from here to there?

Next post will be about how we actually do find the drugstore or movie theater… It’s not how the media or arts portray us.

Last year was the 30 the anniversary of the implementation of the Americans  with Disabilities Act. This act has been so gutted, it’s kind of useless, and more about that later.

I want to talk about the NPR coverage.

It was ableist, to say the least. People with disabilities were talked about as though they were useless before the law was passed. Blind people were talked about as though …

Oh, wait, we weren’t talked about at all. The segment mentioned someone with a visual impairment, not a blind person.

People with usable sight, as in they can read large print or enlarged print, are NOT the same as a blind person. They often need no mobility aids such as a cane or guide dog. They have an easier time using technology because they just need the screen enlarged, which requires little to no accessibility, as most
operating systems and even a few sites, have built-in screen enlargement software. So do E-readers like Kindle and Nook, which is why lots of older people like them.

But blind people were left out entirely.

Besides that, the “partial”, the visually impaired person, put forth blatantly false data, and NPR did not call him on it. Their fact checkers were asleep at the wheel.

The visually impaired man said that he couldn’t get large print books before the ADA. That is so much bovine feces the entire studio should have stunk to high heaven.

In 1973, a major law called the Rehabilitation Act, Public Law 94-142, was enacted. This law gave disabled children the right to go to public school. No more shuffling disabled children off to institutions and subpar educations, for the most part.

And, because of this law, materials like large print books were to be provided to visually impaired children. Braille to blind people, not that NPR mentioned blind people, or audio or a reader, etc…

This was seventeen (17) years BEFORE the ADA. Either that guy was an idiot or couldn’t figure out what the ADA had done for him.

My husband had large print books when he attended school in the 1980s. Elementary school. (He finished high school in 1997).

But did NPR care? Not at all.

Yes, this post is a rant against NPR and sloppy, ableist, discriminatory reporting. This post is a rant against leaving blind people out of reporting as though we matter so little we shouldn’t be mentioned.

The onl times NPR has mentioned blind people are in the way of “inspiration” porn” type reports. In fact, that’s how they report 99% of issues on disabled people, if they bother to report at all.

Take all the reports on COVID. We heard about some developmentally disabled people. We heard about some other types of disabled people and their struggles during the pandemic… Oh, wait, no we didn’t.

We heard about “normal” students, but not how disabled students, blind students in particular, fared with distance learning. We heard about moms and we heard about people of color. But not one blind person was mentioned and how the pandemic affected them right down to the software for getting a
vaccine was inaccessible, how Uber and Lyft turned into nightmare rides for those still needing to go out for shopping because of no delivery service in their areas, and several had to go to work regardless of the pandemic.

I’d actually like to know about how blind students fared. Face-to-face technology isn’t always accessible. What if that blind person had a problem where they couldn’t read their computer screen because text to speech went quiet for reasons unapparent without speech? Did their grades suffer because they didn’t have a live reader and were taking math? After taking many math classes, I can assure you that, if you are totally blind, in other words, have no usable sight, taking math without a live reader is pretty impossible unless one has the book in Braille and know Braille, which is another issue.

Instead, we heard about how some entitled suburban children didn’t get to go to prom. (Reports with inner city kids were much more interesting.)

If you ever think NPR is a collection of entitled schills paying lip service to standing up for marginalized groups, how they left out disabled people during the pandemic, how they misrepresented the glories of the ADA, their reporting last year is a prime example.

Thinking the ADA has taken care of accessibility for disabled people is as ridiculous as thinking the Civil Rights Act has done away with racism.

I’m reading the book There Plant Eyes, A Personal and Cultural History of Blindness, which releases June 1, 2021, and am fascinated by one point in particular that Godin, the author, makes.

She says that blindness often denotes spiritual sight and enlightenment. She gives numerous examples of this, and I don’t disagree with her in the least. The symbolism goes back thousands of years.

The spiritual enlightenment I received recently, ironically, is just the opposite of this.

All my life, as is the case with most disabled people, I was made to feel inferior. “You can’t…” was a common refrain playing in my ears. “You can’t play with us.” “You can’t go to the movies with us.” “You can’t learn how to—ride a bike, swim, play an instrument, dance…”

And the list goes on. Needless to say, I did learn an instrument, to sing, to ride a bike, to swim, to dance, and a number of other crazy things. I climbed down a dam in Kentucky and up a mountain in Colorado, for example. OK, so I couldn’t play volleyball or baseball; golf or tennis, and I wasn’t bad at kick ball when some accommodations were made.

But the can’ts went on. Teachers even thought I couldn’t. In college, a small liberal arts college with pretty rigorous standards for admission and in my sophomore year, a professor in speech class said I didn’t have to give my introductory speech to the class because I couldn’t. Um, how did she think I was going to pass a speech class?

I requested a move of class immediately. What a bigoted old biddy! I’d been public speaking since I was a child because I went to public school a decade before 94-142 became law requiring public schools to take disabled children.

One point in my life I was not told I couldn’t do was be a Christian. I mean the born-again type. My church went through a revival and my family threw themselves into it with all their hearts and souls and considerable talents for organization and creativity.

I put on the mask of going along with it all for so long I forgot it was a mask. I knew the talk, the Christianese. I know the subtle and not so subtle ways to signal I was evangelical. Everyone believed I was right along with my oh-so-admirable family.

And I was miserable.

The comments began slowly, occasional, usually after a special prayer meeting. As the years passed, they increased, words that cut deep because they told me I didn’t belong even so.

“If you had enough faith, God would heal you.”

In other words, I wasn’t a good enough Christian. God had afflicted me with blindness to keep me humble, keep me down, keep me a second-class citizen. Why? Was a particularly sinful? Actually, no. Other than having a smart mouth now and then, I was a nauseatingly good kid. I didn’t drink. I didn’t do drugs. I didn’t smoke. I didn’t have a first date until I was seventeen and was a year older before I thought French kissing wasn’t disgusting. (Probably the kisser, not me).

But I was told again and again that I wasn’t faithful enough. I was a spiritual failure because I was still blind.

I had many snarky responses to this. “God didn’t heal Paul either. Nice to know I’m as much a spiritual loser as the Apostle Paul.” Or “God is sparing me from seeing the ugliness of this earth.”

People didn’t believe I could find beauty in things other than the visual. That’s typical in our society and more about senses later.

So the worm of self-doubt crept into my soul. I wanted to be good enough. I wanted to be good enough. Did I want healed? Probably. I won’t lie—being blind in a sight-oriented world sucks. The world is full of ableists, which is what sucks. The world is full of “You cant-ers”.

Recently, I woke with the revelation that one reason why I have spent my life feeling not good enough for—fill in the blank—acceptance by others, a job, a publisher, a book contract, a group of cool people…

The reason why I have struggled with these feelings of inadequacy Is because of “Christians” telling me I wasn’t good enough for their idea of faith, not good enough for their version of God.

Once I shed the evangelical distortion of religion, a burden slipped from my shoulders. I am not blind because I’m not good enough; I’m blind because I had oval rather than round eyeballs and that shape blocked my tear ducts, which didn’t allow fluid to drain from my eyes. That fluid build up and caused considerable pain, it destroyed my retinas and optic nerves until one eye died and I had to have it removed. I am blind because of glaucoma, not because of some vindictive deity who singled me out to be a lesson in what happens when you’re not good enough for him.

I’m stepping on toes in this post. At this point in my life and career, I don’t really care. I have made my views quite public in this post: Yes, Blind People Read Books, We Write Them, Too. So I am attempting not to repeat myself here.

In the past three years or so, writing organizations have been talking a great deal about #OwnVoices. This is essential, marginalized groups talking about themselves instead of others acting at their mouthpiece. In other words, if you are a person of color, you get to write your characters of color, not some white person with all their white privilege and paradigms writing the story for you.

This is a grand thing. It’s way past time. The difference between the #OwnVoices books and books that have authors who only think they know what they’re talking about, are tremendous. The #OwnVoices books are so much better often in subtle ways I haven’t yet figured out, and in less subtle ways that make me happy, if the subject matter doesn’t. I’m saying, talking about the difficulties of being a person of color in a white privilege world, or being LGBTQ in a cis world. (The difficulties make me sad because life shouldn’t be that way for anyone because color of their skin or sexuality; religion or culture, etc., are different than the “norm”)

I’ve never deigned to write a character of color as my main character. I have no clue. In a novel I’m writing that may never see the light of day, I will have a point of view character who is gender fluid. You better believe I will get a sensitivity reader before I ever send this to an agent or editor.

Back to writing organizations, as well as publishers, talking about marginalized groups being written by the people in those groups instead of others. This is grand. This is a huge step in the right direction.

And they are only emphasizing their bigotry, their ableism by the fact they never mention people with disabilities in these discussions. In fact, they too often leave out the word disability at all in their disclaimers regarding what they will not tolerate prejudice against, or what they welcome. They use the
term “or ability”.

This is appalling. By refusing to say disability, they are pointing out their discomfort with the word and thus its meaning. They are relegating disabled people to the lowest of social levels—not even to be mentioned by condition. We can say black. We can say brown. We can say gay. But don’t dare say
disability. It might make those poor creatures feel bad about being … well, you know … It’s just not nice.

What’s not nice is not mentioning our existence. That is shunning us worse than smacking away a fly. I am physically wounded in my heart every time I see “or ability” without a mention of disability.

And I am outraged when I see a book about a person with a physical disability, with deafness, with blindness, with autism, etc., written by an able-bodied, hearing, sighted, and/or nonautistic person. Though editors are fighting back with authors trying to write marginalized characters when they are not
in the group, (I refer to main characters, not secondaries), they allow book after book about disabled people, either physically, sensorily, or mentally, to be written by people who know next to nothing about these conditions.

When I see a character is blind, I won’t read the book. I stopped a couple decades ago when I realized these authors were clueless, that they used false information they received from one person, from an observation, or, heaven forfend, from television to make their judgments. They also fall into the idea
that, unless the person is healed, they can’t possibly have a happily ever after.

A writing mentor of mine wanted to write a book about a blind heroine. Her editor wanted the woman healed at the end. The author didn’t write the book because she thought the idea nonsense. How was she to be healed in nineteenth century Arizona when we don’t have many cures for blindness now?

At least in her first book, Candle in the Window, Christina Dodd only had one character gain his sight back. She incorporated myths of the time in this story, and it doesn’t change the fact that she perpetrated the idea that the happily ever after requires a healing. Many other books like this follow, even one written by a blind woman about sixty years ago.

Jude Devereaux has a book in which the blind woman secondary character ends up with a beggar who is often referred to as being “ugly”. Of course. Why would she, though beautiful, get to have a beautiful man? We’ll give her the poor, ugly beggar because, after all, she’s blind and—what? Won’t notice his
twisted limbs? Are blind people not sexual and want a partner pleasant to feel, if they can’t see them?

In a later book, Ms. Dodd refers to a character as being “wheelchair bound”. No one is bound to their chair. Their lives are not over because they need to use one. Physically disabled people live productive and vital lives like anyone else.
And don’t get me started on the errors with service dogs. People are so clueless. No excuse for authors to be. The research materials are abundant and easy to access. That’s a separate post.

I have never known a blind person who counted steps, but in about every movie, TV show, and book, the blind person counts steps. Are you not aware that one’s step changes with type of shoe, with the weather, with one’s fatigue level? Right. And if that’s how you get around, you can never go someplace
new. Sorry writers of Butterflies Are Free, and that play-to-movie did a lot of harm to blind people.

And, oh, lord, the face feeling. Gag. I forget the author. Maybe BJ Hoff. Stopped reading in the first few pages because the new employer asked the new employee if he could feel her face. Sexual harassment anyone?

I like it when my partner touches my face. To have a stranger do it, or to do it to a stranger gives us the creeps. Where have your hands been? Did you wash after you went to the bathroom? How about after you ate tacos? I love tacos, but don’t put your three-hour-old-taco-smelling hands on my face.

I’m not going to talk about super powers here. That’s for a book review I hope to get up next week.

My point here is that publishers need to consider that disabled people are the ones who should be writing #OwnVoices books about disabled people, not authors who have given the subject half-assed research because they think they know it all from observation.

Publishing seems to think anyone can write a book with a disabled main character. No qualifications needed. They protest against white people writing black or Asian or brown (LatinX), etc., if the author is not of that racial category  (I don’t say race because race is a made up social construct.)  LGBTQ books are expected to be written by someone who is LGBTQ  identified. Yet I have read—tried to read—a score of books with a disabled character when the author has no experience with the disability, as in, they don’t have one.

The reason why I say I have tried to read is because the writers get it wrong. They have no clue what life as a person with a disability is, the internal thinking, so they resort to cliches and stereotypes. They also resort to  considerable misinformation. An author in the SF Bay Area wrote a huge chunk of misinformation about a guide dog. Lazy writer. One of the most important guide dog training centers is right there in San Rafael. The author couldn’t be bothered to take a tour to get her facts right? Or did she not like the truth, so rewrote misinformation for her own convenience?

Here are other issues I encounter with blind characters:

• They are afraid to be in crowds.
• They sit in a corner at a party and hope people come to them.
• They wear dark glasses.
• They count steps.
• They end up with the ugly guy because they only care about the heart.
• They get healed before the story can have a happily ever after.

I’m sure I could come up with more, but these are the sorts of things  I’ve encountered in books.

I once had an editor reject my story because she said, “A blind woman would never do that.” She thought she knew more than I did about fears and pains of a blind woman. When she learned I am blind, she never apologized. I rather despise her for that. She presumed I knew nothing that I had taken straight from an adoption website because she had “seen differently in the media.”

I was so appalled I nearly gave up writing. What I did give up was writing disabled characters, at least in contemporary fiction.

Now the time has come when I want to write #OwnVoices fiction. I have a short story coming out in an anthology that is #OwnVoices contemporary fiction. I am working on a novel  that is also #IwnVoices. I am not candy-coating the hardships of life as a blind woman in our society. In truth, I am emphasizing some serious issues we face too often.

I’m writing it, and will anyone want it? I don’t know. Publishing is inordinately prejudiced against blind people, whether as writers or characters. Realistic characters. My Huffington Post article out a couple of years ago touches on many issues I have faced. Many more exist. When I wrote for a division of Amazon Publishing, I was at a conference book signing. The marketing person came through to introduce herself to the authors. She talked to the person on my left. She talked to the person on my right. She ignored me, though I was looking right at her. Later, she ignored me at the publisher party, though I specifically addressed her—by name.

I wasn’t worth meeting. Despite my books published with them, despite my other books published, despite my awards and nominations for awards, I was unworthy.

I’ve had editors refuse to work with me, and editors who thought me incapable of editing my own work despite it being my twentieth novel. I have had agents refuse to work with me once they learn I’m blind.

Seriously. Apparently my writing changes with the knowledge. Of my blindness. For all I know, some people won’t read my books  because they found out I’m blind.

The question I get asked more than any others is: “How do you write?”

Would these same people ask another writer the same thing? Uh, no. I have yet to meet someone sighted who’s been asked such a question.

Being blind in America is like being a Leper in ancient  Israel. Even without the guide dog issue, Uber drivers are refusing to take blind people. Not because of dogs; they won’t take blind people who don’t have dogs.

My own publisher, Harlequin, won’t even mention disability on their list of diversities. They say “Or ability”. You know, mentioning race or ethnicity or religion or body type or gender identification is all right, but mentioning disability is shameful. I guess we should all lock ourselves away so the rest of the world doesn’t have to remember we’re around or worry about using words they—not us—consider shameful.

That includes publishers. A few blind people are published in nonfiction. A great book is coming out in June, Their Plant Eyes by M. Leona Godin. But I have only known of four blind people traditionally published in fiction. One says he has never made sell-through*. One seems to no longer be writing as of about 30 years ago. One had a couple books published in the ’60s. Another had one book published in 2012, but nothing since. Godin mentions another book from the ’50s I’ll leave to you to read about in her book.

And then there’s I. More than two dozen books traditionally published and a couple nontraditionally published.  Why?

Because, as I have, they have run into prejudice, into obstacles that have thwarted them.

We can call ourselves whatever we like. We have agency. You don’t get to call the shots.

Language is forever a problem for people when dealing with disabilities. I went to a conference when I worked in the disability field, where the speaker, who has a physical disability, kept referring to “visual characteristics.” By the end of the day, I finally realized he was referring to blind people. He had no problem referring to someone having cerebral palsy, being deaf, having autism, but when he referred to blind people, he must have sprained a synapse trying to come up with something as horrific as “visual characteristics”.

He was trying not to offend anyone. That was the excuse I was given.

Say what?

Yeah, that from a leader in the disability advocacy field.

Excuse me, but he offended me by NOT referring to my disability for what it is. I’m blind. It’s a medical condition. It’s not shameful. Why should I be offended by calling it what it is?

I have had people say things to me like: “Oh, don’t call it that. It isn’t nice.”

Calling you ignorant isn’t nice either, but that’s what you are. It’s my. condition; I call call it what I like, and what I like is to call it what it is.

I am not without vision. I have lots of vision. I just can’t see.

I am not visually impaired. OK, I’m so impaired I can’t see. I consider an impairment of vision to mean I have some sight, which I did once upon a time.

I have seen other people with disabilities complaining about the same thing. They say something to someone abut being disabled, and people correct them, saying they should use a euphemism like differently able or something equally obnoxious.

Hey, people, it’s our condition. We get to call it what we want. You have no right to correct us or to try to usurp our agency by correcting our language.

What my publishers says in their list of diversity issues: or ability. Excuse me? Why won’t you mention disability? You mean you don’t discriminate against someone because they don’t have the ability to type with more than two fingers? Or they don’t have the ability to cook? No, you mean their inability to hear or see or perhaps walk. That’s called a disability, so name it because we claim it.

I have a colleague who is black. She fights against being called African-American. Yes, she’s black, but her ancestors did not come from Africa. Calling her African-American is inaccurate.

Telling me I am without vision or handicapable or whatever is also inaccurate. I am not differently able. I can’t fly. I can’t hear a pin drop six blocks away. My ears and nose and other senses work just like everyone else’s. My eyes simply don’t work.

So do not try to change our language. A person who uses a wheelchair for mobility is not “halt” or “invalid” or think up your own euphemism. A deaf person is not “hard of hearing”. He is of no hearing. A blind person is not without vision or visually challenged.