I had initially been planning to write about all the food places I’ve been able to check out while being here in Brno but something happened that I felt was more pressing to write about. It’s something that I find really upsetting and vile. In short, the way I’ve been living my life didn’tadd up to the stereotypes of disability for some folks. Accusations of disabled people “faking” aren’t anything particular to the Czech Republic but, there is a very different disability history to consider here. In addition to the detrimental social impact of accusing disabled people of “faking”, few things make me angrier than people accuse me of this. I live in a world where I’m not blind enough and yet I need a white cane to get around safely. Disabled people are always under surveillance. Sure, it may be out of some kind of concern sometimes but there is a darker side as well. Throughout history laws like the ugly laws which began in the mid-1770s until the 1970s and forced sterilization n of disabled people up until the 1980s, are just two examples. Then, we have always been watched carefully, so that maybe someone could catch the faker in a moment of forgetfulness. If you don’t appear to be the kind of disabled person most of the world has come to expect, odds are that people will be skeptical of your claim to be disabled.
*A note on the word “Crip”: Crip is a more radical term embraced by some disability communities. It is reappropriated from the word “cripple, similar to how the LGBTQ movement has taken the word “queer” and used it as away to denote pride. I used the word “Crip” to signal to the ableism at hand and to also affirm my allegiance to a more radical approach to disability.
I apologize for any confusion. This post is technically out of the order I’ve been going int. It jumps ahead about two months.
Dug into the good ol’ Microsoft Paint box for this one! image Description: my profile picture form FB which confused the “people” in the group It is a glowing picture of me, in the sunlight, wearing a summery shirt which exposes my arms and part of my back. Across my face, I have written “fake” in white crayon.
What I wouldn’t Give for a Monica, Phoebe or Chandler…
This is hard to say but, it’s been two months out here on my own and I haven’t really Benn able to make any friends. Sure, I’ve had about a dozen cups of coffee with new people but nothing has really stuck, you know? Back home, I have a large group of wonderful friends. These are people I have met beyond school and work situations and documentation of this does exist. I did not anticipate having so much trouble making friends while I was here. Granted, I’m doing solo research and not in any kind of structured setting. Going to the coffee shop everyday doesn’t count I suppose. I’m 40 yrs. old and Everyone I meet is in their early to mid-20’s, and while we’ve had some nice chats, it’s understandable that they may want to spend their spare time with someone who doesn’t remember the Challenger exploding. The people my age? I’ve been told that the women my age is mostly spending spare time with their children and engaging in the accompanying activities. I haven’t yet found where the gaggles of childless women like me hang out. I sense that the friendship dynamics between men and women are a little different here. I have many male friends in the United States and it’s not a big deal. I grew up with my brother being my best friend and his friends were my friends as well. I’m writing all of this to say that I find it very different here with befriending men.
I thought after the seventh grade I had this all figured out, but here I am, a grown woman going on and on about how hard it is to make friends. At this point, I don’t care, I AM going to message that gal from the Church of Latter-Day Saints. I mean, I have really been trying. I’ve met nice people at Masaryk and asked to have lunch or get coffee and I’m surprised at the rate of rescheduling that never goes anywhere or just being ghosted. I can’t help but start to think, “What is wrong with me?”. All this time, I thought I was pretty cool to hang out with but now? Mike tells me that I AM cool, but I don’t trust him since he it is his duty as my husband to say things like that.
I tell myself that everybody is busy and they have much bigger fish to fry than making friends with some rando American woman. It’ nothing personal. Mike’s like, “If there was some random person from another country trying to reach out for a hang with you, would you find time?”. I’m like, “Yes, yes I would!”.
So, I start to think about being disabled. Is it that? I remember when I first lost my vision, my social circle shrunk by about half. I hadn’t thought about people not wanting to be my friend because of my disability for so long. I think about trying to pass for sighted. That would probably last for about ten minutes or maybe I could say I lost my glasses and I’m waiting for my shipment from the U.S.! In the same vein, it’s harder to be social when you can’t see people and their expressions. I keep talking to people while they are on the phone, it’s quiet endearing, I’m sure.
Maybe desperation is just oozing out of my pores? I don’t know. It’s just hard. So, I turned to Facebook to try to make some friends there is a thriving group page called Living in Brno and I had been using it to keep up with the goings on in Brno. I have posted a thing or two here and there. Where can I buy melatonin? Anyone up for helping me learn Czech? Things like that. Recently, I saw a person post that hey were blind and needed help moving something. “Oh!”, I thought, “Someone who has at least one thing in common with me!”. Maybe we could share stories! I posted, “Hi! I’m blind too, would you ever want to meet up for coffee?” we then had a very nice exchange and began messaging each other. We were supposed to meet the next day, and I sent a message to find out where he’d like to meet. I never heard back. I sent another message and nothing. Around the same time, there were two other people I was messaging about informal Czech language lessons. I’d buy them coffee and they’d help me out. It was super friendly. Then, I never heard back from them after several other messages sent. Hmm, okay, that’s a bummer I thought. People are flaky or just busy.
You Better Check Yourself Before You Wreck Yourself
The movie Joker had just come out and I was curious to see it, it being the newest worldwide cultural phenomenon and all I posted on this FB group page, “Where’s the best place to see Joker? Anyone want to go with me?”. Along with one comment from one group member, “Me, but you’re married so no.”, I saw people commenting “Scammer “in response to my post. One person, “Watch out folks, I’ve seen her comments, she’s a scammer.”. Huh? Me? No, that must be in response to something else. I asked, “Who’s a scammer? How can you tell?”. Another person commented and elaborated. In summation, he cited my comment on the other blind person’s post, where I identified as blind. According to him, I didn’t look blind, and my profile was obviously totally fake. The insinuation was that I was trying to scam the blind man out of something. Let’s just let that sink in. My body immediately had a very strong visceral reaction. I shot up from the couch, paced around the apartment, sat back down to read it again and got back up and paced. I shouted, “What the hell!?”. The shock started to wear off and now I was furious.
How dare they! My photo on my profile was taken by my husband, who is a professional photographer and he really captured a good moment. It’s one of the best pictures ever taken of me. I’m looking towards the camera with intention, not in the way most people imagine someone who is living with low vision would. My profile bio says I’m an NYU grad, activist, artist and Fulbright scholar. I guess this was all too unbelievable for this narrow-minded person. I took a screen shot of this. I wasn’t sure what I was going to do with it besides send it to friends and be like, “What the hell!?”. I couldn’t do anything right away since I had an appointment at the Roma Museum. There’s nothing like a verbal description tour to help calm your nerves.
This isn’t the first time I have dealt with this. Over the years since I’ve been using my white cane, people will say “She’s not really blind.” After I have passed by. This has happened about ten times and it is always men or teenage boys who say it. Once, three young male adults walked by me and shouted, “I’m blind, I can’t see!” and started to crack up. One followed up with, “She’s not really blind!”. I don’ think they expected what happened next. I whipped around quickly, and started to walk towards them, shouting, “That’s a really terrible thing to be saying, you should apologize!”. They stopped laughing and now were like, “Oh shit!”. I shouted again, “You should apologize!”. They just scurried off. Somehow, having several people take the time to write it on my post hurt so much more. I was here working to improve access in the arts for other disabled people but these yahoos thought I was scamming them!
I was buoyed by the support I received on Facebook and in messages. If I was at home, I don’t think this would have affected me as much. But, I’m out here alone, trying to make friends on this page and now my reputation on there is wrecked. It’s also just so very gross. It’s just grossness on top of a fairly tough time. I love being here, I love the experience but it’s hard as hell not knowing anyone. I have a cup of coffee here and there with folks but it’s always a one-off kind of thig. Now, this page which I thought might be really helpful is a source of anxiety for me. I posted about looking for art galleries that weren’t the Trip Advisor ones and I had the fleeting thought, “oh man, this is another thing that blind people supposedly don’t do.”. Should I preface the post with an explanation on access in the arts? This is not how I want to be. One of the group members posted that I should go to the Lords of Kunstant Gallery and I thought it was some kind of veiled insult. I’ll let your brain grapes do the work there as to why…Let’s just say screen readers are a hell of a thing.
I decided to write a post for this page addressing it all in a way that also touched on how harmful this is to other disabled people. The point wasn’t just to address my experience but also how these are harmful stereotypes and that views on disability need to be expanded. As soon as I posted, one of the women calling me out as a “scammer” sent me a message apologizing profusely. I was expecting her to ask me to take own the post because the screen shot had her name on it. She didn’t and it seemed to be very sincere. She also mentioned that “so many people in the group were calling me a scammer, and that she just got caught up. I thought to myself, “What? Am I in high school again?”. This thing went deeper than we thought! Many other people also posted sympathetic comments and encouraging words. One person did post, “Still looks like advertising”. I had posted my blog and a video of me with my past students from St. Joseph’s. I wrote, “I must be pretty bad at advertising – the blog mostly talks about how much I miss my husband and the video is about ten years old. Then she attempted to insult me with a gif, which I couldn’t see. It was a really multi-layered moment. Should I have asked her for an image description so I could have equal access to my insult?
Like Goblet of Fire, But No Dragons
So that whole thing wasn’t super great. I’m not still upset but I am much more wary of people being wary of me. I fall those people on that page thought I was faking, I’m sure there are others out in the streets who think so as well. Sometimes I like to stop and look at a dress in the window. I can’t always see everything in a window but sometimes the lighting and contrast are just right and I am able. It’s always a tense moment for me. Every time. What are people thinking? I imagine they think, “Oh, she’s just pretending so she can get a fee handout” or “She’s just trying to get attention with her cane she doesn’t really need it”. I’ve already been feeling this way but now it has manifested itself into a well-crafted crappy paragraph. When I can zoom out for a moment form my anxiety, I realize that no one is looking at me, they are all just looking at heir phones. I assume this because I can’t imagine another reason why throngs of people keep running into me.
This isn’t something I can explain to sighted people. There are about a million frustrating things throughout the ay that arise because of my lack of vison and then to be told I’m pretending brings on a very special mix of emotions. Friends have told me to not let it bother me, and it would be easier to do if this wasn’t something that I encountered often in my own life and when talking with others. I hear people expressing contempt towards people faking a disability to get social security and how it’s unfair that other more deserving people need it. Umm, that sounds like a problem with SSI and not the individual who may have an invisible disability. Or with testing, “This student gets extra time for her test but she doesn’t really need it.”. Even with children, a co-worker once told, me that a student was exaggerating her autism so she didn’t have to do a task. Throughout my college career, I was always having to prove I really had a visual impairment. By the way, sending a ton of vitriol to those moms in that big college admissions scam. Things were already bad enough.
As a disabled person in the world, I’ve been called inspirational, brave, angry, negative, tragic, and now I can add scammer. If anything, I don’t find myself vining with any of those descriptions, especially “tragic” or ‘scammer”. I know I am determined. That’s a word I can definitely get behind. I’ve always been that way. I remember being an eight-year-old kinin South Dakota and I was really into dinosaurs and archeology. There was an empty sand lot across the street that some of the neighborhood kids would play in. My brother, some kids and I were digging around and I found a large white stone. I was sure it was a dinosaur bone! I began digging excitedly. It was taking a really long time but I was set on uncovering the find of the century. Then, I got the other kids to help. We all were digging with a fervor that only little kids have. We were so intensely focused. Finally, maybe an hour later we unearthed the treasure. We all came to the conclusion that it wasn’t a dinosaur bone but instead a large rock. But we had had so much fun digging it up.
I set out to make friends by asking folks to a movie and then friggin’ Slytherin has to get p on my post. Do to this I made some allies and maybe even a friend? I’m always looking for that dinosaur bone moment! I’ll end this post with one last additional observation about my “joker” post. A female member of the group posted “scammer” on the “you’re married:” comment one male member had written. As I assumed at this point it was directed at me, I admonished her for being a PhD candidate and not doing her research. I was proud of that burn. In her reply she told me she was talking about thee male commenter and that he had been posing inappropriate comments to women on the page. Then her and him got into and he responded, “Cinemas were created so that women could give men head.”. Do you think there was a slew of comments by other people addressing this guy’s disgusting behavior? Nope. So, I reported his comment and directly messaged the moderator. He was then blocked immediately. People had complained about him in the past but I guess not enough people? Maybe they were too busy dissecting what real disability looks like
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Next time, I vote totally use that ask for an image description burn. But I’m also snarky af with the kind of people. What is so hard to understand that disability is a spectrum?!
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Oh, I did! Actually! And the even funnier part is, she did not understand what I was saying????! It just did not compute there is absolutely no understanding of verbal description and access online