for a while, i thought i was the princess, […] but the princess looks into her mirror and only sees the princess, while i’m out here, slogging through the mud, breathing fire, and getting stabbed to death.
Stop Talking About ADA Compliance in Terms of Difficulty
Observe the following statements:
If a business owner cannot meet the safety standards set fourth by the government, they should not be allowed to do business at all.
If a business owner cannot meet the health standards set fourth by the government, they should not be allowed to do business at all.
If a business owner refuses to do business with people of color, they should not be allowed to do business at all.
Are you nodding along in agreement so far? Good. Let me throw one more at you:
If a business owner is not in compliance with the ADA, they should not be allowed to do business at all.
I bet I lost a couple of you here and, honestly, I don’t understand why. Why is it when people talk about something not being ADA compliant, the discussion is always couched in terms of the burden being placed on the business owner? We do not talk about other civil rights laws this way. When companies complain about the “cost” of hiring more women or people of color, we pull out our tiny violins and stick them straight in their eyeballs. But when companies talk about the cost of an accessibility retrofit? Or installing automated doors? Or Bathroom stalls? We give them this weird misplaced sympathy and try to make up excuses in order to give them more time or get around the law altogether.
Businesses, regardless of size, age, or financial stability should not be allowed to be in violation of the ADA. Period. Full stop. If they are in violation of the ADA, they’re business license should be revoked and their doors fucking shuttered. I don’t care if you personally know the owners, I don’t care if they’re the sweetest people on the planet and raised you from the age of five after your parents died in a mysterious accident. If a business refuses to comply with a civil rights law, they don’t get to do business.
I have fucking had it with people complaining about the cost of disabled people existing. I’ve had it with the excuses and the delays. It’s been 27 fucking years. Your time, like all my fucks, has run out.
This is a story of how assholes in the workplace can fuck with ADA compliance
Let me make this pretty fucking clear, first as a prologue to this story A disability isn’t just the actual thing wrong with you. It’s the anxiety that goes along with being stuck, the fear of having an episode, the constant stress of avoiding an episode, the difficulties of adapting to the environment. It’s also pain management, moderating how much you do in a shift, and so on. It is also the emotional trauma that comes with the physical disability.
Let me tell you about myself. I have very limited vision. I fake being sighted very well because I knew what it was like to have sight. But I’ve been mostly blind now for almost 22 years. It gets worse every year as I age. I have constant difficulty adapting. So if my phone (which I use as a visual aid) starts to die, it upsets me. If I get disoriented, it can trigger anxiety attacks. If the light is too bright, or I don’t have my sunglasses, or I simply have a bad day, it triggers a migraine. Those migraines are physically debilitating. My immune system has a hair trigger. Stress triggers all sorts of horrible attacks from skin to lung. And then there’s the emotional frustration and suffering that goes with this.
But never mind that shit. It’s shit you can’t see, right, so it must not be real. I deal with it, because I know how insensitive able-bodied people can be. I put up with it and I manage it, but sometimes I can’t anymore, and I just need a fucking break. But when that happens, because I seldom mention it, people treat me as if I’m hysterical. I’m not. I just need my fifteen minutes of silence where someone isn’t telling me how to live. So yeah, I don’t often talk about my disability unless it comes up and has something to do with physically being able to do my job. I’ve never had a job I couldn’t do, if some minor changes were made, and I always had great employers who helped make those changes. However…it’s not just the place and the way things are done that need alteration. Sometimes it’s the people too.
And now we are to the story.
I used to have this job that involved me being out on a floor, chatting to people. Anyway, I got into a conversation with one of my coworkers while we were just sitting there, and I mentioned that I have bad vision.
She was stunned. “What do you mean?”
“I mean, I’m legally blind. It’s a long story.”
And it’s one I like to avoid telling in this kind of environment, but the trouble is, once you’ve said that you have a disability, able people want to fucking push. They want to test you, or they’re curious, and they feel they have the right to know, and so by god you better tell them, or you’re obviously a liar. And yeah, you can say to yourself that that isn’t what you’re doing, but it is a story you’re telling yourself to feel better. To the person receiving that kind of treatment, it’s insensitive, intrusive, and can actually trigger symptoms.
It’s like if you discuss your condition you give up the right to have boundaries. I now know how to say to people, “you don’t have the right to know that about me, and right now you’re triggering my anxiety by reminding me of all the fucking doctors visits I had to sit through where they injected me with dye that caused anaphylaxis and stabbed needles into my eye,” but at the time of this story, I didn’t know what to say, besides answering the question.
So I gave a very shortened version of why I am legally blind. She kept questioning me. Can I drive, can I read, can I this, can I that? But what about all the times I’ve seen you do this, or that, or whatever? Did you try eating kale, did you try this, did you try that? I finally said, “I went to some of the best specialists on earth for over six years. I’m just a freak of nature, and you’re actually making me really uncomfortable right now.”
This was because her questions had become hostile, judgemental, and disrespectful. She assumed that because my condition is idiopathic (unknown cause), it must not be real. She assumed that because she’d seen me look at things, I must be able to see them. She acted on that idea by being aggressive, acting as if she knows more about the human eye than I do. You want to know about how much I know about the human eye?
When I was in high school, I was in AP anatomy (I had to have a dedicated lab partner to dissect things for me, because you don’t want a blind person holding a scalpel, but that was fine). When the segment on the eye came along…my teacher asked me to teach the class..cold. No preparation. He did this because I had been getting picked on for my condition, and he wanted to show that my condition made me stronger. I walked up to the transparency machine, and I taught the fucking class. Not just an in-depth explanation of the anatomy of the eye, but the way it works, how the brain processes it, the various dysfunctions it can have, and then people began asking how my vision worked, and for the first time, I got to explain to my class (the same people who knew me BEFORE I lost my vision) how I see.
By the end of that hour, kids understood, and they never made fun of me again.
That’s how much I have known about the eye since I was 15 years old. And here’s this fucking woman, insinuating that I am making more out of it than it is, telling me I probably have too alkaline a diet, or this that and the other.
I finally said to her, “This is really bothering me, can we change the subject?”
She says “Did you go to a priest?”
“Well, doctors don’t know anything. Did you go to a priest and pray?”
“I’m an atheist, and I don’t think any of this is your business.”
“Well, that’s your problem. You didn’t pray enough. That’s why you’re sick and why your eyes don’t work.”
You didn’t pray enough.
I looked her right in the place where her eye would be if I could see her fucking face and said, “At the time this happened, I was 14. My step father was a minister and I went to church every Sunday. I’m an atheist because my illness brought up a lot of issues and never offered anything but fear. Are you seriously going to sit there and tell me that I was sick because I didn’t pray?”
And you know what she said to me? “You obviously were a sinner then and never repented.” And then…
She starts singing a fucking hymn at me.
I got up, shaking with rage, I walked over to my boss and explained that I was leaving. She asked why, was going to argue with me that my shift wasn’t up, except that she saw me and understood that if I didn’t leave, i was going to hurt someone. I told her that I had just been treated so badly, it was actually causing me to have hives (which it was), and that I knew I was going to have a migraine very soon. I didn’t wait for her to answer. I just left. I walked down the street to a store and called my best friend Angela. Angela is the daughter of an ex-priest (who came out and married a man) and a nun (who also has a chronic illness) and when Angela was born, she had a rare heart defect that resulted in a massive stroke at the age of 1. She has had FIVE open heart surgeries to rebuild and repair her heart. She is chronically ill in ways I cannot imagine. She is also intelligent, caring, manages a support network and charity for people with heart conditions, helps raise my niece, and oh yeah…is religious, but the kind of religious I like because she really lives by the words.
When I told her what this woman did to me, she was absolutely speechless. The fact that anyone would say a child deserved to be given a horrible illness and suffer, because they were a sinner and needed to beg for forgiveness is fucking gross. If that’s how her god operates, fuck him. If that’s how grace functions, then fucking count me out.
I spent two hours sitting on a park bench, shaking from head to toe, in pain, my skin reacting to the stress with welts and hives. Within about thirty minutes, I got my migraine warnings. These happen to me whenever I am under serious stress, because my blood pressure increases, and when this happens, it puts pressure into my eye. This causes a chain reaction. I finally made it home, and quit that job two weeks later, because every time I had to work with that woman, it gave me the most horrible anxiety.
I kept expecting her to try and bless me, or demand I go to her priest, or try and tell me that I should stop taking my medications, or mock me, or call me a sinner. Tell me I was going to hell…because obviously sickness is a sign of sin. And she low key did, and that was enough, but the anticipation of having to see her every day…that’s what killed me.
SO GET THIS THROUGH YOUR FUCKING HEADS ABLE-BODIED PEOPLE
A disability isn’t just the physical problem. It’s the PTSD of dealing with operations, doctors, interrogations, tests, surgeries, and on and on. It’s pain management and exhaustion. It’s depression and frustration. It’s anxiety triggered by people being insensitive pricks (and in my case, the triggering of my immune system when under stress). It’s the constant strain of trying to adapt and perform as well as others. It’s the constant worry that someone will behave toward you in a way that is condescending, and that you will have to fight, once again, to be treated fairly.
THAT’S A FUCKING DISABILITY.
Imagine what you might feel if I took your arm away. Imafine what you’d feel if a person made fun of you, told you to get over it, told you that you didn’t pray enough. Now imagine it’s a disability they can’t see. How do they act? Like you’re a fucking liar who makes shit up to get attention. And they treat you like that too. I can’t tell you how many stories I’ve heard from people who have told me that when their co-workers found out they had a disability, people were told to get out, to quit, were harassed, had equipment sabotaged…
So when you make your workplace ADA compliant, think about the people you have on your team and handle that shit too. Get rid of employees or contractors who are going to destroy the productivity of a disabled worker, because I can fucking promise you something: if you don’t, it will cost you. I was damn good at that job. When I left, my boss begged me not to. She even offered to fire the other girl, but by then I was already so over the job and the people and the place, that it was way more trouble than I could handle. I was better at my job than she was, and because of her bullshit, my boss lost a good employee, and then eventually fired the other one too. Disabled people have more fucking work ethic than you can imagine. Can you even comprehend what it takes me to live on a daily basis? It’s WORK. And If I can work through life AND work through your shitty job, you’re going to really be pissed if I leave.
Disabled people can contribute, but they need those around them to grasp what they’re dealing with. It’s not about pity. It’s not about going easy on us. We can handle difficulty, because we do every day. It’s about being mindful and decent. It’s about having fucking common sense.
So maybe I should add to my list of ways to deal with partially sighted or blind people DON’T FUCKING SING HYMNS OVER THEM OR SUGGEST GOD PUNISHED THEM FOR NOT PUTTING THEIR BIKE AWAY BY STRIKING THEM DOWN WITH BLINDNESS.