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!

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.

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.

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.

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.

Shame or Shameful

Last week, Leona talked about feeling shame, not fear, when she found out she was going blind. This is something with which I have struggled for a long time, though I have only recently been able to put a name to the emotion.

We have no reason to feel shame for going blind. It’s not like we poked ourselves in the eye with a sharp stick or took some mysterious drug to make it happen. Since we didn’t do it, why the shame?

Society’s attitude toward blindness and blind people. People stutter and stammer and fumble around with the thesaurus to find words to use other than blind. When people seek euphemisms such as “without vision” or “unsighted” or “sight/visually challenged”, we know in an instant that this is what people always do to stop using the actual word, which is shameful or naughty.

Not using disabled or blindness is like saying “junk” instead of testicles and penis. In truth the euphemisms bring to mind all those romance novels of the ’80s that used terms like “manhood” for penis, and “feminity” for vagina.

It really sounds ridiculous. We ask kids if they want to “tinkle” because, for some reason, urinate is icky or shameful. People don’t poop; they “relieve” themselves.

Why? Because we think that talking about sexual and other bodily functions is shameful. So of course we need a euphemism for blindness.

Except we don’t. Blindness should not be considered shameful. Yet when people like Leona and I discovered our failing eyesight, we felt shame. We still feel shame. Why? Because the way society is set up.

Today, I had to explain to someone for the hundredth time—not her that many times, but someone in her position), that I don’t care how many accessibility modes you turn on when you make a PowerPoint presentation for a conference, my computer will not read it over Zoom. Zoom itself is a picture, so the screen of a PowerPoint presentation is just a picture within a picture, not even the text registers as print that can be read.

Yet, as I explained this, I felt uncomfortable. I was causing this person a moment of “what do I do now?” panic. I might even be causing her extra work. She didn’t understand about how PowerPoint and other such software work with screenreaders. Why should she? She hasn’t had to know until I came along.

I wanted to apologize. I wanted to lavish thanks on her for her extra work. I wanted to say never mind, I’ll manage and then not get the same benefit from presentations as others. In fact, I had to sit on my hands to not type these things to her, to many others over the years.

A web site doesn’t work. A form is inaccessible. I can’t reach a location easy for everyone else. I am shamed that I can’t simply drive there, click on what is necessary, fill in the edit boxes.

I am shamed that I cannot…

That’s the crux of the matter. Because the world is set up for sighted people and sighted people think that’s the only way the world should be set up, blind people are shamed for being unable to fully participate.

Being blind isn’t shameful; ableism is shameful.

What do you think you can change to make the world a little more accessible to persons with disability?

To be able to participate, we often have to beg and plead and sometimes get forceful—not violent, but assertive—to get our basic needs of participation met. This is humiliating. This is shaming. This is wrong.

I challenge you to look around and find situations that are not accessible to someone with a disability. Examples:

  • Steps into a business, impossible for physically disabled people.
  • A conference where the speaker refers to a PowerPoint without saying what the text is.
  • Important information given over a loudspeaker without any written notice.
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