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Twice now, I’ve seen a post on Facebook several have shared that says something along the lines of how special needs children are put upon this earth to teach us—whatever.

This is ableism in its worst form, what we like to call “Inspiration porn.”

I’m going to start with calling anyone with a disability as someone with “special needs.” We don’t have special needs; we have needs that society is set up to deny us. Nothing is special about a need when one needs it to live the same quality of life as anyone else. Would you consider elevators in a ten story building a special need? Would you consider steps to a front door rather than a climbing rope a special need? How about signs posted in a language you understand?

Most people wouldn’t consider these special needs in the least. They consider them reasonable accommodations for the good of the majority of people. If everyone had walking disabilities, then we would consider ramps and elevators in all buildings reasonable, not special. A student needing textbooks recorded or brailled would not be considered special if everyone had a reading disability. Nothing would be special about that need.

Society, however, is set up to be in print, to have steps, to not always have elevators; therefore, society and not the disability makes different needs than what society provides, special.

On to the fact that we are not given disabled children to teach us patience, appreciation for what we have, or any other kind of nauseating platitude. We have disabled people in this world because this world is messed up and imperfect and … who the hell knows why some people are born with or later acquire a disability.

Disabled people are human beings working to make the most of a life in a world that is unkind to us and often senseless. Some of us may do things that inspire others to feel better about themselves or the world around them. But those things are actions, not the disability.

I am not blind so you can feel better about having sight. Think about it. Isn’t that kind of sick? God looked down and said, “I’m going to give Alice glaucoma that robs her of her sight so that Susie Snowflake, having a bad day, can say, ‘At least I can see’.” That puts me in mind of the story in the Gospels about the two men who go into the synagogue to pray and one says, “Lord, I am so thankful I am not a poor man like that sinner in the back.” Or something like that. I admit I haven’t read it for a while, but I get the gist right.

To believe some people have been given lives in which they must struggle against the ableism of society just so others can have something to be thankful they’re not is appalling.

Let me leave you with this story:

When I was in high school, I was a shy, introverted nerd lost in books and my own bad poetry. Another student befriended me, and we started hanging out. We went lots of places together like school-sponsored events and local pizza hang-outs. Sometimes others came with us, and one day something dawned on me—this girl surrounded herself with other females she deemed not as pretty, not as socially adept, not as attractive to the opposite sex as she was.

What made me see this? She dropped me one day. Why? Because, though I was shy and nerdy, I was also very pretty and had little trouble attracting the opposite sex. She was no longer the center of attention when I was around, so she had to get rid of me.

Thinking a person has a disability to inspire others to do or be better is as good as saying, “I want to be better than someone else, and I am better than a person with a disability.”

Yesterday, I left my house for the first time in thirteen weeks. Well, I’d been on my front porch and in my backyard as well, and that was it. The reason I finally left? My number came up to receive the first dose of my COVID vaccine, and I had to make a trip to the emergency room.

The two were not related.

I took a taxi to the vaccination site, so left my poor, neglected guide dog at home. Why? Because I didn’t want to miss this important appointment because an ignorant cab driver refused to carry her, or the people at the vaccination site got squirrely about her or….

I’m good with a white cane. I’m better with my guide dog, far more confident, more independent. I should never have to leave her home because of these kinds of fears, and yet I do at times like yesterday. She would have loved the excursion.

For the first time in three months, I put on makeup and dressed in something besides sweat pants and a comfy shirt. I even wore heels.

The trip to the emergency was because of a trip. Ha-ha. I tripped over my dog’s bed, which she had moved, and, on the way down, hit my head on the wooden entertainment center.

I thought I was all right. I have a hard head. But I wasn’t. When I walked, I felt like my body and head were going in different directions. Writing was difficult due to concentration, short term memory, and word choice issues. I kept picking the wrong words or forgetting where I was altogether.

Yes, I have a concussion.

But I digress from my point about the isolation of isolation.

Most of us have suffered isolation in the past year, especially single people. We have been immured in our houses like medieval hermits devoting our lives to a higher power away from the world.

But gradually people began to move about, going to grocery stores, then outdoor dining, drives along the lake or forest preserves, or bike rides around town, whatever got them out of the house. Some people even traveled, to other states, to other countries, even to just other towns. A change of scenery, a change of pace.

I and thousands, perhaps millions, of disabled people have been unable to do so. Going to the grocery store? Not possible. How could we get assistance and practice social distancing? How could we ride public transit with social distancing? How could we risk our sometimes fragile bodies with catching the coronavirus despite masks and gloves?

Blind people have been going out at risk to themselves. They have faced problems with getting Uber and LYFT rides. If the blind person has a guide dog, the driver takes off, claiming the blind person wasn’t wearing a mask so they aren’t accused of discriminating against the dog.

Those blind people have taken selfies of themselves wearing a mask at the time of pickup, geomarked and all. No matter. The drivers don’t care about truth or the law. You’re blind, good luck getting where you need to go whether it’s a vet for your dog, a job to pay the bills, or a doctor’s appointment because you need a physical or some kind of therapy.

I fired my internist because she just won’t understand why I can’t come in. How am I to get there? I ask her. It’s nearly two miles. I can walk two miles, but then I’d be expected to wait outside until my turn. Hello! It’s winter in the Midwest. It’s been relatively mild, except for the polar vortex in February that had piles and piles of snow blocking my way for weeks. Then there’s the waiting outside thing. Waiting outside while my dog was at the vet was bad enough in 90 degree weather. Waiting outside with my dog in sub freezing weather is not acceptable. And, if she’s too stupid to get that, she’s too stupid to have a medical license. Or just too insensitive. Either one disqualifies her as far as I’m concerned.

But that’s typical of how disabled people get treated by the medical field. Our concerns, legitimate limitations, our issues are ignored, even told are in our heads. Or something.

At least I finally had an issue that is in my head. Ha-ha.

Thus, in the past year, few people with disabilities have been able to go anywhere. Thosd with families willing to drive them about were better off. Not all of us are that blessed. I had some friends who took me out a couple of times, to their houses for lunch, to the memorial for one friend whose husband passed away. A neighbor took us to get our flu shots.

We walked to the vet’s office about a mile away and sat in the heat while the dogs were treated. I thought I’d died and gone to hell or back to Texas.

From March 12, 2020, to March 26, 2021, I went exactly six places. I haven’t been to a beauty salon since February of 2020. What’s the point? In person, I have seen four friends and three neighbors in fourteen months.

So when people talk about being isolated, being away from people, I look at their Facebook pages, their Twitter feeds and roll my eye (the fake eye doesn’t roll very well). And wish they understood true isolation. Do they understand that I would consider a trip to the grocery store, where I can make sure I get the right things, a treat? That going for a ride in a car and smelling the lake water or pine trees or something would be as good as a trip to the mountains or the ocean?

Other people think isolation means not being able to go to bars or restaurants. For most of us disabled people, isolation means just that—isolation.

Yet none of the gazillion stories on NPR and the like have interviewed a single disabled person who lives on their own struggling to cope with being separated from the smallest pleasure like a cup of coffee they didn’t have to brew themselves. We are so isolated that our isolation isn’t even noticed.

I slip my guide dog’s harness over her head and secure the chest strap. Then I secure my mask over my mouth and nose. We are ready for the twelve-block walk to the vet’s office. Windy is healthy; she simply needs her annual physical and three-year rabies vaccine. I cannot postpone the visit.

Normally, a twelve-block walk would not bother either of us. But today, the weather is hot and humid, the wind non-existent. At the end of the walk, we don’t even have air conditioning to look forward to. Due to COVID-19, the vet is practicing curb-side contact only. They come get the dog, treat her, then bring her back. Meanwhile, because I am blind and don’t have a car, I stand in the heat. If the predicted rain begins, I have nowhere to shelter.

What I find worse is the idea that a stranger is handling my highly valuable Seeing Eye Dog, something I just don’t let happen.

This is one of the many ways in which the pandemic has changed—especially inconvenienced—my life as a normally active and independent blind woman.

Another has come in the practice of cutting my own hair.

With a slice of the scissor blades, I sheer off the hunk of hair which I hold in the other hand. This is the third time I have been forced to cut my own bangs. Fourteen months without being able to get to a hair salon has left my bangs hanging to my cheekbones. Now they are just above my eyebrows, fairly straight and a little textured. This time I am taking a greater risk—I am cutting off the three inches of scraggly and dry hair at the end of my single braid, the inches that once held the beautiful deep blue of my signature look. Not too terrible a job for a woman who hasn’t been able to see her reflection for the past thirty years.

Though many salons are now open, I have no way to get to one without taking public transit or a ride-share. I’m not comfortable doing either. Wearing a mask is all right, but how do I keep socially distant when I can’t see where people are?

I know blind people who have gone into the world and faced considerable harassment from others. In the grocery store they can’t see the arrows on the floors marking the flow of traffic, so people yell at them if they are going the wrong way. If they pick up a can or package, to use technology to scan the product label, they are yelled at for touching more than the goods they intend to buy.

The normal means we use for getting assistance is no longer an option. We can’t shop with someone from the store while maintaining social distancing, even if we could find that assistance, which is dubious at best.

I was used to being able to get a grocery delivery within two hours, so was shocked the first time I had to wait twelve days for my food and nearly three weeks for kibble for my guide dog, Windy. Although this improved within a few weeks of the first lockdown, anxiety follows in its wake that something of the sort will happen again, and I can’t always find the goods I need.

Planning ahead just isn’t an option when one considers produce like arugula that just won’t keep that long. And, of course, with delivery services, if something is out of stock, the substitutes may not be adequate, if available at all. Sometimes, the shopper brings the wrong item altogether such as lemonade instead of orange juice. I eat a salad every day and, suddenly, I have nothing green in my fridge.

If getting groceries is a problem for blind people living in populated areas, how much worse are services for those in small towns or rural isolation? Delivery services are slow, if they exist at all.

How do you go to a restaurant, the beach, or a park for a change of scenery? Sure, blind people can walk or take public transit, if it’s available, but once there social distancing is a problem. Others need to look out for them. You can guess how well that works.

It doesn’t.

Then we have other situations with which to deal. Conferences have gone virtual. Most work places are using familiar programs, but some conferences have chosen more complex software that barely works with a screenreader no matter how much the company claims it does. The blind person is left out of full participation.

Not participating takes a professional toll on the blind person. Worse, is the emotional toll. Isolation is good for no one. Phone calls, text messages, and even a video chat do not fulfill the need for face-to-face human interaction. We all know this. We’ve read a thousand stories about being alone, yet, how many people have considered how difficult being blind during a pandemic can be? We are thwarted in going out because maintaining social distancing with any reliability is not possible.

When the weather was nice, I could go for walks to get out of the house, and have some interactions with neighbors over the fence or at socially distant wine parties on the deck. That ended with winter. The most we all manage is a hello from one porch to another.

My neighbors are great. If they go to the store, they ask if I need anything. One neighbor cleared my sidewalks with his snowblower and another shoveled my front steps. And I can’t do a thing for them. They refuse pay. With so many different eating habits and allergies nowadays, baking cookies just isn’t a natural thing to do.

So I live in isolation with my husband, who is an attorney and also blind, spends twelve hours a day working from his basement office, and the four cats, who are great entertainment and company, and the two dogs, who are sweet and loving. In other words, no one is a good communicator in English.

I wasn’t even able to vote privately this past election. Mail-in ballots aren’t accessible to blind people in my state, and the poling location near enough to walk to, was shut down due to inaccessibility. How ironic! The law shut it down because people with physical mobility issues couldn’t reach it, but those of us who can walk but have a sensory disability, can’t get to the nearest precinct because it’s too far for walking, especially in unpredictable weather; thus, we were disenfranchised.

I called my representative, the county clerk, who is in charge of elections, and vote promoting organizations. No one could help me.

Now a huge location for giving COVID vaccines is opening up, and I can’t get there. It’s in the heart of the city and too far from me for walking, even if I did take public transit. I may be able to get the vaccine delivered to my house, but that’s uncertain and far in the future. So, although getting the vaccine would free me up considerably to move about despite not being able to maintain social distancing, I can’t get the vaccine.

I hear a great deal about how the pandemic is affecting racial minorities, which is sad and angering. I hear a great deal about how it is affecting the elderly, which is concerning and, for those in nursing homes and other care facilities, infuriating. We hear a great deal about how persons with mental disabilities living in group homes and care facilities are contracting the disease because of neglect and a lack of caution. Yet not one person has considered how badly a year of isolation from society affects those of us who are blind and have physical disabilities. Once again, we don’t exist. Once again, we are even more marginalized than the marginalized.

Welcome to this blog. In this first post, I wish to explain the reason why I call it Ableism Disables.

Disability is a social construct. Society in general sees someone in a wheelchair and thinks, “Disabled person”. Or people a blind person in a restaurant unable to read the menu and think, “Disabled person”.

Yet what truly disables these people? It is not the condition that places the person in a wheelchair. It is not the eye condition that renders the person to be unable to read a printed menu. No, it is the barriers society puts in place that disables the person.

Barriers include, but are not limited to, steps a wheelchair cannot climb. Menus in only print. Movies without subtitles so deaf people cannot benefit from the dialogue, as well as the pictures. Likewise, it is movies without audio descriptions so blind people can gain access to the action beyond dialogue. The existence of these barriers and the attitudes of society that nothing is wrong with the status quo—and a great deal more we shall explore in this blog—are what create ableism.

Ableism:

This is the ways in which society treats persons they perceive as having disabilities, in how they speak to the disabled person, how they exclude them, how they make presumptions about them.

Presumptions include, but are not limited to, the notion that disabled people are poor and living off the government; are uneducated because they aren’t as bright as sighted, able-bodied people; are so ashamed of their condition they don’t want anyone to refer to it.

Don’t sprain your synapses seeking euphemisms for disability. We are not differently able. One ability the average person has is inoperative in the way in which society has set up the world to work. We are not handicapable. This is a portmanteau word that is repugnant on so many levels I won’t even go into it here.

We are disabled because of the ableism society perpetrates in its refusal to make the world equitable.

And don’t tell me about the ADA that has changed that. It hasn’t. More on that in another post.

So this is why I call this blog Ableism Disables. In the upcoming weeks, months, years, I wish to address issues like why the ADA is not particularly beneficial, the struggles disabled people have in various industries, in acquiring jobs at all, and how we are working to make changes that are affective from physical barriers, to soul-deep changes in the attitudes of ableists.

Don’t worry, I will not be the only writer here. I hope to have many and far more capable communicators than I as guests.

Stay tuned. The site launches in October!