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32. Questions "Tipsy" People ask about my Disability



Show Notes

Alcohol can be a social lubricant, so it’s no surprise that I’ve received some of the most fascinating, bizarre, and hilarious questions about my low vision at the bar. Disability is often the elephant in the room. People either avert their gaze or stare at us across the street. They either ask random, invasive questions like “what happened to you?” or chastise their children for asking about our mobility aids. However, conversations surrounding disability (if you are comfortable talking about it) do not need to be uncomfortable, depressing, or violating. To celebrate my 21st birthday (eight months after the fact), the 32nd episode of Legally Blonde & Blind answers questions my listeners and I have received from people who might have been a little tipsy.


Transcript

Many times, our disabilities are the elephant in the room. People are afraid to ask us questions about our low vision. They don't want to offend us. But alcohol can be a social lubricant if you will. It gets people a little more loose. As a result, I've noticed that I've gotten some of the most interesting, bizarre, and hilarious questions about my albinism at the bar or parties. So let's talk about it.


Intro Music


Hello, everyone! Welcome back to another episode of Legally Blonde & Blind. I hope you all are doing well. I'm currently finishing up my last semester at Georgetown University, which is unbelievable because I started this podcast during my freshman fall in my parent's basement. Little did I know where it would take me.  Next month, I'm planning to make an episode about reflections and advice from my time in college as a blind student. But for now, I am still in the thick of it. I have been doing tons of research papers for my classes. What's interesting is that I'm in business school, right? That's my major. But Disability Studies is my minor. So, the last semester, I have mostly been taking disability studies classes, which means I'm doing a lot more papers and research and a lot fewer accounting exams. And I wanted to do a podcast episode that was a bit of a departure from what I've been doing the last few months on Legally Blonde and Blind. A lot of my episodes recently have been very complex and research-heavy, and unfortunately a bit devoid of humor. I really enjoy tackling issues in the disability community that are controversial or not talked about very often because there is a lot more that goes into advocacy work than simply “raising awareness.” But for today, I just want to share some funny stories and answer some questions that I have gotten from people who might have been a little tipsy. As those of you who follow my social media accounts probably know, I am a fan of cocktails, especially those that are smoky or set on fire. I love going out and trying new things, and I also love talking to strangers. I'm very open about my blindness–as you probably know, and it usually comes up very early in the conversation either because I have a guide dog sitting right next to me Or because I mentioned something about this show.


When I've been reflecting on the past eight months as a 21-year-old I realized that some of the most interesting and also bizarre questions I have gotten about my disability have been at the bar. But before we get into that, I do have some safety tips. I wanted to share this because, unfortunately, having a visible disability does make us more vulnerable in some cases. And I don't want to imply that we are responsible for preventing our own assaults. That is ridiculous. But I do want to share some advice on how to stay safe and mitigate some risks when you go out.


First off, no drunk guide dogging. Crowded bars and clubs are probably some of the worst and most dangerous places for a service dog. If you are planning to party or you're going to be around a lot of people who are dancing or crowding around a bar, do not take your guide dog. Just because legally you can take your service dog somewhere does not mean you should. You know, you are just as responsible for their safety as they are yours, and trying to do guide work while impaired is not a good idea. I'm not trying to say if you have a guide dog you can never have fun, but if you are going to do that, leave them at home. Go out with a group of trusted friends, take your white cane, and make sure you take them out to the bathroom when you get home before you crash.


That being said, I don't do that very often. I'm not a big club person. I do not want to stand around a crowded bar where people are trying to get watery drinks all at once. I much prefer restaurant-style bars where it's in addition to some table service because then you can also get truffle fries, which are my favorite. And what's interesting is that sometimes at restaurants, especially if the bars have a big overhang, it's almost easier to put the dog under the bar than it is to have them sit beside you at a table. One thing I didn't realize from guide dog training is that they learn a skill called “under” where they can lay down under a chair, but 99 percent of the chairs you will find in public do not work for this trick. So sometimes it's nice to have a spot underneath the bar where they can sit and you know they won't be in the way of a server or a busser. 


Moving on! Do not drink on an empty stomach. That is a bad idea. The first few times you try to have a drink, make sure you go out with your parents or trusted friends. Better yet, do it at home to see what you like and how much you like. It's also super important to keep an eye on your drinks. I cannot emphasize that enough. For us who are blind, I think it's especially important to either hold your drink all the time or keep it close to your body. So if someone tries to lean over and slip something into it, you'd have a better chance of hearing or feeling it. I know especially for things like college parties some companies make things like drink shields that you can put on top of a red solo cup. And if something ever feels off, throw away the drink. It doesn't matter if it was an $18 cocktail. If something feels off, trust your gut. That applies to pretty much anything in life, but especially when you're going out at night.


Now that we're done with the depressing part, let's get into some of the interesting interactions I've had. Many people will say first impressions are very important, and I agree. I've had some interesting introductions to people. For one, I had somebody sit down next to me, look at my dog, and say, “It's okay. I'm handicapped too.” You probably know I'm not a huge fan of that word, but I do think it's important to meet people where they are in their disability journey, especially if they're older adults who have been used to hearing that type of language for the last 50 years of their life. I'm not going to automatically judge you for saying that. I don't particularly like the word, but we all come from different places. I've also been asked in a very concerned tone, “Are you okay?” And I think this is because, with our nystagmus and our eyes shaking, we can look inebriated to people even if we are not. I've also had people think I was having some sort of seizure because of my nystagmus. Either way, I'd rather have somebody jump in and ask than not. And most of the time people don't even really notice or register your nystagmus anyway. It is something to keep in mind though because I've seen posts in the albinism community Facebook group for instance where people had to do field sobriety tests when they were driving because of their nystagmus, or medical professionals thought that they were under the influence because of how their eyes were shaking. Last but not least, the absolute worst introduction that anyone can ever make is the question, “Do you know who I am?” That stresses me out so much. Because 99 percent of the time, when I'm asked that question, I do not know the answer. If you think a blind person doesn't know your name, it's pretty simple. Just go up and say, “Hey, it's Marissa.” Problem solved. 


Now, once I start talking with people, one of the first questions I get asked is, “What can you see?” And it's a hard thing for people to grasp, right? Because I'm sitting with a guide dog, but at the same time, they see me reading my phone, obviously very close to my face, and being able to see certain things, like a drink at the bar table that was handed to me. The way I explain it is, I have normal color perception, so I can see colors, and I have a normal field of vision, so I don't have tunnel vision, and I don't have, blind spots, right? It's just blurry all around. I actually have a series of photos on an Instagram post I made a while ago, that are like simulations of 20/400 vision, which is my acuity. I'll also point out the things I can see around me, so I'll say things like, I can read this menu, but only if It's an inch away from my face. I can see that you're wearing a gray vest and a white button-down shirt, but I wouldn't be able to see your eye color or if you had things like piercings or makeup on. I also point out that everyone's vision is different and mine in terms of the albinism spectrum is on the lower end. I usually mention that there are some people who can drive, but even for those of us who are legally blind, some can see more than others. My boyfriend, for instance, who also has albinism, can see street signs, like the walk sign or the hand, during the day, which I cannot, and it is the weirdest thing to me. Long story short, if I don't have a lot of time, I'll just say, it's really blurry, like an unfocused or greasy iPhone camera. 


The next question I usually get asked, admittedly, isn't the best thing to ask a stranger, or really any blind person, unless you have an established relationship with them, or can tell that they're clearly very comfortable talking about it, is, “how long have you been like that?” And my answer is that this white hair and this pale skin are all natural. I was born this way. But in reality, most causes of blindness are degenerative. Most people lose their vision. They aren't born blind. And it can be a very touchy subject. I once got asked, “How can you say vision is overrated to people who are losing their sight?” When I say vision is overrated, I don't mean that it's unimportant. What I mean is that there are many ways that people with various disabilities can navigate the world and live meaningful lives. The general assumption is that when you go blind, it's the end of your world. You lose so much. For humans, sight is by far our most important and valued sense. The point of saying vision is overrated is to think about other ways of interacting with the world. and realizing that a diagnosis is not the end. In many cases, it's the beginning. 


One time, after telling someone that my blindness is caused by a genetic condition, I had them ask, “Well, you must hate your parents then, right?” as if they gave me some kind of curse, and it's something that I joke with them about, like, “Why, mom? Why'd you have to give me this?” And honestly, one of my favorite things to do is take common sense assumptions like this about disability and turn it on its head. I love telling people, “No, actually, I love the way I am.” It's shocking to them. So here are some things I'm actually mad about my parents giving me. One has to be sun sneezing. So whenever I go outside and look at the sun or am in a bright area, I sneeze. This happens to me all the time. And if you look it up, it's actually hereditary. My dad does it too. And the second thing is celiac disease. I'm allergic to gluten, so I can't eat things like wheat, rye, or barley. That means no pasta, pizza, sandwiches, burgers, cupcakes, or cookies unless they're explicitly gluten-free. And sometimes I just see a really delicious-looking dessert, and I just want to eat it. For instance, There is no replacement for the apple cider doughnuts that you would get at the farm after you picked out your pumpkins for Halloween. And, of course, your white pumpkins with albinism, right? There is just no replacing that deliciousness in my heart, and it's the only thing I really remember eating before I went gluten-free. Oh, the other thing too is the ShopRite cookies. So if you ever had those fake processed sugar cookies with that icing that was sickly sweet, but it looked so appetizing because it was like neon pink with all these sprinkles. Oh, they were so good! Another question I get asked that has nothing to do with albinism is whether I can drink on a gluten-free diet. Turns out, most beers do have gluten in them. But I hate beer, so that's not really a concern of mine. Whiskey, however, my distilled product of choice, actually is made with wheat, rye, barley, and other glutinous products. But, through the distilling process, the end product ends up gluten-free, so it's totally safe for people with celiac.


Now, by far the spiciest, most controversial, and a bit existential question I get asked is, “With the technological advances we're seeing right now in science and medicine, do you think that there will be a way to reverse your vision loss? And would you pursue a cure if one were available to you?” Now some people, some parents rather, definitely do not want to hear my opinion on this. And for that I say, enjoy the years when your kid is a cute little infant that doesn't have thoughts of their own because that will not last forever. But a lot of people do want to hear my perspective on it as someone who has been blind from birth. As many of you know, especially if you've watched my podcast episode called “I'm Not Broken,” I have a lot of thoughts on this topic. I'm not going to go too far into it because I have a whole episode explaining it. But the gist is, on an individual level, I do not care if people want their vision restored or not. I personally would never pursue a cure, even if it were completely free, and had no side effects whatsoever, would not do it. But other people would, and I think something that I've kind of started working on is having more empathy for people who come to disability from different experiences, right? I mean, I have been blind from birth, but there are people who become blind or acquire other disabilities through very traumatic circumstances. If someone 40 years and suddenly, through a traumatic brain injury, loses it, I could understand why they would want some kind of mechanism to reverse that loss. In a perfect world, everyone would have that choice available to them.


But in reality, we live in a society with limited time, money, and resources. At an institutional level, when we prioritize fundraising for medical research designed to look for a cure—and in the albinism community, there are projects like that that are specifically looking for ways to reverse the low vision and lack of pigment that our condition causes—when we prioritize these types of projects over efforts to increase acceptance, accessibility, and advocacy efforts, we are sending a very clear message to everyone—from random people on Facebook to kids in our community—that our condition is a bad thing. That it is something that needs to be fixed. We would be willing to fundraise for projects that may or may not work over organizations and solutions that already exist that can make our environment more accessible and better for us.


I made a post a few months ago titled “We Don't Need a Pill to Cure Albinism” that responded to NOAH’s research grants. And it's kind of making the rounds again because there was a family that is doing a fundraiser for an organization called The Gift of Sight. In their words, they are running seven marathons in seven days to save sight for children like their baby. Sadly, I will never know if they are successful, because they said some not-so-nice things about me and blocked me on all of my socials. They even blocked my guide dog, which I never thought Smalls would get blocked by somebody before, but If after all I've said on this show, you still want to raise money for an albinism cure, I have an even better idea for you. So this person wanted to run seven marathons because of the seven types of albinism. However, there are things called the last man-standing races. And here's how they work. So every hour, the participants have to run, I think it's like a little over four miles. And after they run those four miles around this loop, they can do whatever they want. They can eat, they can take a power nap, they can get a drink. But at the end of that hour, they have to be at the starting line to do it again. And this goes on for days. There have been cases of people who have fainted, or started hallucinating because they're just so exhausted after running for almost three days straight without any substantial rest. Now that's what I think you should do because if you think albinism is so bad that you're going to put yourself through not one, not two, but seven marathons, the logic should be that our suffering will never end until they find a cure, so therefore you should do a last man standing race to understand our anguish. And if anyone agrees to do this, I will promote your fundraiser on my socials.


That's my whole spiel. If you know me, you've heard it before. That's what I tell people. And if you'd like to learn more, I highly recommend checking out that specific podcast episode because it goes into a lot more depth. But one really interesting conversation I had surrounding this topic that I wanted to share was when one person asked me, “Is there anything that you want to do that you can't do right now because of your vision?” And barring accessibility issues, there are very few things that I just straight up cannot do. There is one thing, however, that I thought about. Riding a bike. Now, I can ride tandem bikes, and I really enjoy doing that activity, but there's a part of me that would love to, when it's nice outside—maybe like 60-70 degrees, not too hot, there's a nice breeze, it's sunny outside—there's a part of me that wishes I could just get up in the morning, hop on a bike, and go wherever I want to go. I can't do that, but I just finished a book called Loving Our Own Bones that gave me such a unique and useful perspective on this. So one, there is so much emphasis on the things we cannot do, which, to everything I can, is very small. But people tend to hyper-fixate on it. And the author was talking about how the reason for that is, we're taught that whenever something looks impossible to us to fix it, to challenge it, to find a solution, and that's wonderful. But sometimes there aren't any. Even in a completely perfect world, free of ableism, I would not be able to hop on a bike by myself and ride outside without getting hurt. But every human being has limitations, and I think that there is a lot you can learn by sitting with those limitations. And accepting your body as it is. Approaching it with compassion rather than frustration, rather than trying to fight it and pretend it doesn't exist. 


For instance, I think tandem cycling has taught me a lot more than riding by myself ever would. I'm the type of person where I want to be in charge, right? And when I first started writing with another person, I sort of resented the fact that they were in the front, they got to make all the decisions, they just told you when to turn, when to start, when to stop, and you just listened to them. But it taught me a lot. It taught me how to trust people and to be a good follower, because that's just as important as being a good leader. Regardless of who you are and what your ability status is, you will never get to be in charge all the time. I think accepting our limitations as humans is a great way for us to learn about things like interdependence, being creative, working together, and most importantly, being compassionate. Showing grace to ourselves and others when our bodies and our minds fall below our standards of perfection. I'll take that over riding a bike by myself. 


Okay, that's the deepest question I have on this list, I promise. But one thing I get asked about the tandem bikes in particular is whether I, as the blind rider, sit in the front or the back of my bike. And obviously, the person with functioning eyes needs to be in the front so they can steer. However, there is at least one blind person that I've heard of—it was in the book Navigating Blindness, which is a collection of essays written by cool blind folks—one person wanted to know what it was like to be a captain, which I kind of understand. He had his dad sit in the back and shout when it was time to turn, and to what degree, which is the most terrifying thing I've ever heard, but clearly he lived to tell the tale. 


I also have been asked whether I can drive, and this is from people who I was in a conversation with who knew I had a guide dog and a podcast called Legally Blonde & Blind. So my usual response to that is, “Do you want me to drive you?” And the answer is usually no. I also get asked whether I think self-driving cars will be available to me at some point in my lifetime. And I think it'll be quite a while before people who can't manually drive a car are allowed to operate an autonomous vehicle. I think it's good to always have that sort of fail-safe. Plus season 20 of Grey's Anatomy just started and the medical crisis in the first episode was a self-driving car that the person in the vehicle could no longer control that slammed into an ambulance over and over again. I know that's a bit dramatic But, count me out for the time being. This may change when I'm older too, but I love living in the city. I think commuting via public transit or walking versus a car is so much better for you and the planet. I like being able to get some exercise in for both Smalls and me. I just don't want to end up in suburbia.


Now, my next question is something I'm sure anyone who has gone out with a group of albinos in public knows very well. But let me tell you, nothing makes your date night better than the waiter asking, “Is that your brother?” And I think besides the white hair, we look very different. I just couldn't imagine going up to two people that had red hair, or that had the same skin tone, or of the same ethnicity, and being like, “Are you related?”


Lastly, there are some questions about my guide dog. I have been asked, “Is she always like that?” And this is when she's settling under a restaurant table or a bar. People tend to have this misconception that guide dogs are always working and that they're sad if they're working. I think it's just because Smalls has these giant puppy eyes. She has a resting sad face, but believe me, she's very happy. She is snoozing in her little corner and hoping that I drop a truffle fry. She's living her best life. My favorite question that I've ever been asked about Smalls though, which is partly what inspired this episode, is “Can your guide dog tell when you are drunk?” And as I said at the beginning of the episode, I do not do drunk guide dogging. However, I'm sure she can smell it or tell the difference in my behavior if I've had a few drinks. But in those situations, I don't expect her to do any guide work. In fact, I always like to joke that Smalls is having a house party of her own if I ever go out without her. But in truth, Smalls is very much a doggy introvert. We did a Lunch with Labradors, which was a playdate with about six other working guide dogs and service dogs in training. I organized the whole thing. It was held in my apartment complex. But this dog just stands in the corner the whole time. So maybe if she is throwing a house party, it's just with people, no other dogs.


Now that's all I have for the questions I have been asked. However, I did post an Instagram story a few weeks ago asking you guys for some of your funniest stories. And I got some interesting ones, so I thought I would share. The first one, I can't believe I've never been asked this, but a lot of blind people have been asked this very inappropriate question. And I don't even want to dignify it, but here we go. “How do you know when you are on your period, and how do you wipe yourself?” First off, this is just a really gross and invasive question to ask a person. I have a feeling the people who ask this type of question are men. There are other ways to know when you are menstruating besides looking at the blood, right? People usually are on a fairly regular cycle, you can kind of feel it in your body, you'll get cramps or headaches or just be really angry for no apparent reason. Also, I apologize, Smalls is lying on the couch right next to me. I record on the floor next to my couch because my dining room table is right next to the window. And if you know anything about DC, there are tons of planes. So I once tried recording there and all you would hear is flights. As for the wiping yourself question, we know if we are or are not clean and the bathroom habits of not only us but any disabled person are none of your goddamn business 


Next question! “Did you rent your guide dog?” I've never been asked this either, but guide work is very complicated. It's not like you can hail a taxi guide dog or work with a random yellow Labrador that has been trained and expects to get where you need to go. That's why we lived there for two weeks. But it is actually pretty interesting, the sort of ownership dynamics because when you first go to training, it is not your dog. You only sign a contract that gives you ownership at the end of your stay. And what's interesting is that if for whatever reason, the match doesn't work out between you and the dog, the guide dog school usually reserves the right to take that dog back and potentially match them with someone else. 


The next question was, “Can I try on your hearing aids?” Now, a lot of mobility aids are incredibly expensive. We often talk about how guide dogs cost about $50,000 to train, but medical equipment is also very, very pricey and oftentimes not covered by insurance. So someone's probably not going to hand over their hearing aids to you. I will let people try my monocular, which is a little tiny telescope that I use to read the whiteboard in class, but that is a $20 Amazon product. It is not a hearing aid. 


The next question, these two kind of go in tandem, is, “Do you want to feel my face?” Which, usually, the answer is no. And this one is mostly directed at guys, but “Couldn't you get away with touching girls because you're blind?” Which is disgusting. I did actually once accidentally touch somebody's boob when I was trying to find a handrail to grab onto on the metro and I was absolutely mortified. I felt terrible and we're not promoting this behavior on this podcast. Ugh. 


Last but not least, one of my listeners had somebody ask if their white cane was a sword, which absolutely is epic. I think white canes should be more artfully designed. A lot of them look very bland and clinical right now, which to some degree I understand because you want it to be a pretty easily identifiable symbol that somebody is blind or has low vision, but I want to see more colorful canes. I wonder if somebody could design a long white cane that has a sword-like handle, but functionally still operates like a white cane. That would be the coolest thing ever. I would be so down for that. 


Anyways, thank you all for listening today. I know this episode was a bit less structured than what I normally do, but I really wanted to take the opportunity to just sit down and talk and also answer some questions that are too short to occupy an entire episode. Anyway, if you enjoyed today's episode, make sure to subscribe to Legally Blonde & Blind on Spotify, Apple Podcasts, YouTube, and anywhere else you get your shows. You can also stay up to date by following my social media pages at Legally Blonde Blind on Facebook, Instagram, X, Threads, and LinkedIn. You can also check out my website, www.LegallyBlondeBlind.com, for the transcript for this episode. Thank you all for listening, and I hope to see you soon! 


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