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16. Let's Talk about the Hard Things

Let me share with you the not-so-glamorous day in the life of a blind gal that happened two days before releasing this episode. As I'm rerecording this intro, my parents are in town for a few days visiting and, yesterday, I was walking to their hotel in the pouring rain. I didn't realize it'd be raining that heavily. So of course my shoes got soaking wet because I couldn't see the puddles. Then we went to the National Museum of African-American History and Culture. It is such a cool place with such a cool design, but it was so challenging for me to read anything. It was very dark in there, but the lights would be at the exact wrong place. So if you tried to read something, the light would get in your eyes. And the worst part was that a lot of the plaques were this shiny metal. So needless to say, I was extremely grumpy because I couldn't really see anything in this amazing museum. My back hurt because I was trying to bend over to read things.

I had a headache from the lights. I was not in a good mood. And in hindsight, it might sound petty. But this is a part of being a blind person when I'm in a place like a museum, zoo or anywhere else with primarily visual exhibits, I often feel very left out because I can't fully engage with the material. And I always worry about getting in people's way or accidentally cutting someone off when I'm trying to read something, essentially it is a very awkward endeavor. And my recent experience is one of many reasons why I'm creating today's episode, because I want to talk about the hard things.

*Intro music*

Hello, everyone. Welcome back to another episode of Legally blonde & Blind. Currently, I am sitting in my basement in Christmas PJs enjoying my winter break and the holiday season. I know that this episode will probably be coming out a few months later in the future, because I'm trying to get ahead on recording during the break, but I still wanted to tell you that I am in Christmas PJs.

I have been sitting on this episode idea for quite a while, honestly, but I have been reluctant to make it because, on the podcast, I have always wanted to shed light on the positive aspects of blindness, especially because when you hear people typically talk about vision loss or other eye conditions, it's always in a negative context.

What you're losing, what you can't see, what you can't experience. And that is in large part why several months ago, I made an episode called Legally Blonde & Blind benefits about all the things I love about having low vision. And after releasing that episode, I have felt compelled to create a much more depressing list because while I try to be funny and positive on this podcast, as well as in my daily life, there are a lot of challenging things about having albinism or any other condition that causes you to be blind or have low vision. And I think that these challenges are just as important to talk about because this is how we make meaningful change. These hard conversations can help us raise awareness and analyze some of the barriers facing blind people. I also don't want to invalidate the negative experiences and feelings of myself and others.

I often talk about how much I love having albinism and how happy I am to be in this position. But sometimes it sucks and there is no getting around that. There's no way to sugarcoat that grief, frustration, anger, sadness, and anxiety are a part of any blind person's experience. Well, any human experience.

I think it's important to accept and express these feelings. That doesn't mean dwelling on them, but ignoring them, pushing them down, acting as if everything is perfect. And always being positive is not going to do you or anyone else any good. So full disclosure, this episode. We'll probably be a little gloomier than some of my past topics. This took significant emotional labor to write, record and edit. So I completely understand if you're not in the space to listen to this right now, I purposely recorded this episode during the break, when I'd be less stressed and wearing Christmas jammies, of course. So with that, let us get into my list.

Firstly, many people think that albinism and blindness are inherently a problem. Now, if you've listened to previous episodes of my podcast, this will sound very familiar to you. I have talked a lot on the show about the medical versus social model of disability. But I want to talk more about how this impacts me emotionally. In fact, what inspired me to make this episode was I saw a post in a Facebook group written by somebody with albinism. And I'm obviously not going to give away this person's name or what group this was in, but I do want to share it with you. This person wrote:

“Will there be no medicine ever for albinism? In some regions, it is like a curse for the victims. If given some medicine, some people would get relief from the greatest curse and their life. Will there not be any, is there no chance?” And while the notion of referring to albinism as a curse is nothing new, there was something about this post that just completely broke my heart. I'm not angry at the person for making this post by any stretch, but I'm angry that they had to feel this way to start. I know, I am extremely privileged to be in a position where my albinism doesn't threaten my life or put me in severe danger, but it's still really hard to process and accept the fact that there are other people with my condition who do have to face these things. And it's so frustrating because I want to scream at the top of my lungs, like lack of access to UV, protective clothing and sunscreen, a problem, lack of preventative care for skin cancer, a problem stigma against albino people, a problem, albinism, not a problem.

Another sentiment that I find very challenging is that people tend to think of blindness as a tragedy. Now we've definitely talked about this on the podcast before, but I was doing some research for this episode and I found an article from Smart Vision Labs that states that according to the association for research on Vision and Ophthalmology, they did a poll and they found that people believe that losing their vision would create the largest impact in their life. This was over losing any of their other senses or even other important functions like speaking or memory. They also found that blindness was in the top four quote-unquote worst things that could happen to you.

And this was right alongside life-threatening diseases like Alzheimer's, heart disease, or cancer. And of course, I'm not sure how accurately this poll represents the feelings of most Americans, but it's still quite shocking to read this and think about how some people truly believe it is this bad. If I had to choose between one of these four worst things that can happen to you, it would be very easy for me because blindness, unlike heart disease or cancer, is probably not going to kill me.

In terms of real-life implications, this hits me the hardest when I think about how parents or caregivers react to a new diagnosis like albinism or anything else that leads to low vision. I had really never thought about this until I had made the mother's day episode, but the fact that my parents were so upset that they cried, that they were scared. It leaves this pit in my stomach. And I know it's not their fault, grief, frustration, sadness. Like I said, at the beginning of this episode, All parts of the experience with blindness, but I wish that this intense fear did not have to be a common experience for parents with a new diagnosis. I wish doctors could be more empathetic when explaining blindness or vision loss. I wish they didn't just hyperbolize and give you zero reassurance whatsoever. I wish they talked about all the things you still will be able to do and not just the things you can. I wish that conversation didn't have to follow the same script or rhythm as a conversation when you're telling a patient that they have cancer or a terminal illness.

So when I think about combating this assumption, I don't just think about how it's going to make my life less irritating, but I also think about how it's going to help those parents with the new diagnosis, how it's going to help blind children as they're learning from their parents, their teachers, and their doctors about how they should view their condition and themselves, the next set of challenges.

What I'm going to talk about next mainly has to do with the way in which those who are sighted interact with in view blind people. Now in the next few months, I plan on releasing an episode about microaggressions and how they impact the blind community. So I have a lot more to say on this, but for now, I will give a very brief overview.

Firstly infantilization or talking to somebody in a high-pitched tone of voice like you would for a child is a huge problem. I don't think I've ever met a blind person who hasn't experienced some form of this throughout their life. For example, there is a grocery store on my campus that I now intentionally avoid because there is one cashier there who knows I am blind.

And every time I come into the store, he shouts at me. “Hi, Marissa, it's blank. Do you remember me?” And these are usually very subtle things, but you can notice the tone shift from where they're talking to a person that they perceive as able-bodied versus when they're talking to you. The common defense for this type of behavior. And we'll talk about this a lot more in the microaggressions episode. people will say, “oh, they're just trying to be nice”, or “they're trying to be helpful.” But the key here is that no matter the intentions, they had a negative impact. That person made me feel less than that person made me feel like a burden. And I, or any other blind person shouldn't have to go about our daily lives feeling this way.

Another challenge that goes along very closely with infantilization is general low expectations for blind and disabled people. You're not going to have someone stand up and say, “oh, I think blank is incompetent because they're blind.” It's mostly the little things, which is why I'm going to talk about that in a lot more detail in my upcoming microaggressions episode. But it's when a teacher is surprised that the student they are attending an IEP meeting for is in their AP section and not in their remedial class. I remember a teacher in high school had let me know about an internship opportunity. And after I had gotten the job, they had said they weren't even sure if I could do it before telling me about it, because it would involve looking at a computer screen. I guess they were worried about eye strain. And this was after having me as a student for several months when they saw me looking at my iPad. And what's so frustrating about this is that she could have very well thought to herself. “Oh, I'm just going to offer this to another person because Marissa can't handle looking at a computer screen.”

Staring is also a frequent thing that happens for those of us with a quote unquote visible disabilities in public spaces, like a grocery store. And because of my vision, I don't normally see the staring, unless you are really bad at staring, which some people are, but if someone tells me, oh, that person has been looking at you, it will immediately make me feel uncomfortable in a public space where I should feel like I belong. It can really easily flare up those perfectionist tendencies I struggle with and it can make me feel like I need to be perfect or else they will think all blind people are incompetent.

I had a really egregious example of this happen. I was shopping at a place called Just Tea & Paper, and I have no qualms about saying the name of the company because this guy made me feel awful. I was looking at the price tag, right? And obviously, I have to hold it closer to my face. So the only storekeeper, presumably the owner, came up to me and asked if I needed any help after I'd said, no, I'm just looking around. They were like, are you sure about that? Why are you looking so close? And then he proceeded to say, oh, well, we sell magnifiers here too. And then he just started staring at me from the cash register. And this was a very small store. I could just like, feel his eyes on me. And then I was checking out. He kept asking me all of these questions about my disability. I'm still mad that I bought something from there, but I found something that was really cute for one of my friends. So I just had to do it. And most times when this happens, it's not as abrupt, but I think it really displays what it feels like to be stared at. It really feels like you're under a microscope and that your every move is being watched.

And when things aren't going your way, frustration can be a major and incredibly crappy part of your experience with blindness. You could be in a rush and you drop the cap of your toothpaste and you're on your hands and knees trying to find it in the bathroom so your dog doesn’t eat it. I talk a lot on this podcast about being frustrated with myself. But what I don't talk about as often is when other people are frustrated with you. Once again, it's usually the little things. It's the exasperations in someone's voice when they say “it's over there” or when they say something like “you're not looking,” or when they've tried spending five minutes telling you where something is in a cabinet and it's right in front of your face, but you can't like to recognize it among the myriad of objects. Frustration is undoubtedly a part of the human experience. And we all get frustrated even with people who we love, our family or friends. So I totally understand that these things happen. People get frustrated. It's all part of the human experience. It happens, But that being said, it is still something that is hard, especially when it's frustration towards something that you can't control.

Finally, in terms of how sighted people interact with us, and this is really hard to talk about rates of sexual assault amongst disabled women are significantly higher. According to the Human Rights Watch, when compared to able-bodied women, disabled women are three times as likely to be sexually assaulted. In addition to all of the other challenges people face when dealing with the aftermath reporting and getting justice, for instance, disabled people may rely on the perpetrator for care, for example, or the resources at a women's center may not be in braille or large print or otherwise inaccessible. When you're blind or visually impaired, especially if you're a woman, you think about these things more, you know, you might not see somebody following you as far away as a sighted person could, you might not be as capable of defending yourself.

And I have been very determined to not let this stop me from traveling independently in the city. I'm smart, of course, but I don't want this reality, this messed up reality to limit my freedom and autonomy. Even though thank God I have not been sexually assaulted, there have been times in my life for my consent has been violated.

I often tell the story on this podcast about the teacher who grabbed me by the arm without asking and just dragged me through the airport. And it may not seem like a big deal to you, but touching someone without asking in a situation that's not like a genuine emergency, right? They're not about to be crushed by a falling piano. That is a consent violation. I've heard stories about this happening to blind people, especially those that travel with canes. People will grab them if they're near a Metro station or they're about to cross the street without even asking if they need help or if they can guide them. And like I said, if it's not a genuine emergency if they are not about to walk into oncoming traffic, grabbing a blind person without asking indicates that you do not respect their personal space or their boundaries.

Oh, okay. Deep breaths. Let's go to a bit of a lighter topic. Sometimes you just want to see things I've talked a bit about on this podcast, how you can enjoy the world no matter how you see it. If it's a blurry world, it's still pretty. You can enjoy the world through sight, sound, taste, touch, smell texture, but sometimes it would be a lot more convenient if you could just see it. And I mean, see it clearly. Now, I don't want to stay on this point too long, because I think what you can't see would be the most obvious challenge people would associate with blindness. Though, I do think the one activity that should get an honorable mention is driving. I saw a Tic Tok where it said, “if you live in the US, you are basically under house arrest until you can drive.” And I know that's an exaggeration, but I think to a degree it's true, especially if you live in a rural or even suburban area. Driving is such an integral part of not only our country's infrastructure but also our culture.

For example, I remember on one of my first days of high school orientation, our principal was talking about how we would be coming of age of sorts when we got our driver's license, and while I would never want to drive, and honestly, at this point, I'm glad I don't have to deal with the stress and the responsibility of operating a deadly motor vehicle, not being able to experience that sense of freedom along with my friends when we turned 17 sucked.

Another nice thing to see would be forms of nonverbal communication. There are different theories about what percentage of communication is verbal versus visual. But one I came across was the 55 38 7 rule where 55% of communication is non-verbal. 38% are vocal and only 7% are just words. So as you can imagine with that 55%, I'm missing out on a lot. I can see larger forms of body language and expressions such as when somebody is crossing their arms or when they're fidgeting or pacing. But I can't see facial expressions very well. I can tell if someone sitting close to me is smiling for example, or if someone's crying, I can see the redness on their face, but I can't see subtler expressions, like somebody rolling their eyes or winking or smirking or grimacing. And I think I've adapted very well to this by being very attentive to people's voices and how their tones may change. But I am sure there have been times when I had missed out on social cues, just because I couldn't see

The final item on my list. Is that being blind to some degree limits my career prospects, no matter what you do, some jobs are going to be primarily visual. I couldn't be a surgeon. For example, I couldn't be an airplane pilot. It's just not going to work. I also think about how much more difficult it would be for me to Excel in an entry-level food service or retail. I didn't really have a traditional part-time job in high school. And I think that was at least due in part to the fact that I would have a lot of trouble navigating a crowded fast-food kitchen or trying to serve food in a restaurant and find the right table while carrying several plates of food.

Fortunately, most of my career interests in high school and college didn't involve many hands-on visual tasks. So I didn't have to worry about that, but I think there's definitely a notion of some careers being more acceptable for a blind person to pursue than others. And we should definitely consider how blind people can participate in these underrepresented industries where sighted people would scoff and say, “oh, they can't do that.” Then end the conversation. But the reality is as a blind person, there are just some careers you cannot pursue.

Well, everyone, that was my list, but I think if I left the episode at this point, it would be rather depressing. What can we do about these challenges and hardships?

I think one thing people can do, not just those who are blind, but anybody experiencing something negative or challenging is to reevaluate the way that we approach hardships and avoid toxic positivity. This means we give people the space to feel negative emotions. Toxic positivity can often emerge through phrases such as, “oh, don't worry about it. Don't think about it. Don't be so negative. Always look on the bright side. It could be worse.” And while these phrases may sound good on the surface, what they actually do is encourage people to push down their negative emotions and not talk about the challenges they face.

There are several posts online about how to tweak these phrases, to make them a little bit more accepting. Some examples are acknowledging that it's hard, right? So you could say something like “it's hard, but I believe in you, I imagine this could be really tough. Is there anything I could do for you? It's okay to feel bad sometimes.” Changing our language is a small step, but I think it will have a much larger impact in how we talk about negative experiences.

Something else you can do is think of the ways you can get involved. Although many of the barriers I talked about are to some degree out of our control, that does not make us powerless. We have a voice. If you've ever wanted to share your story, you can write a blog, share on your Instagram story, or even start a podcast. There are also so many ways for you to get involved in advocacy efforts. One organization that immediately comes to mind is the National Federation of the Blind. Of course, you can write to your Congressman or representative to support legislation and support politicians that help blind people.

And finally, remember that you're not alone. There are so many blind people out there living successful and fulfilling lives. There are so many resources for you to get training for you to receive advice. And Hey, there are plenty of Facebook groups where if you want to vent, Hey, go for it. Just know that even if you've never met another blind person in real life before, there is a huge community online that is ready to support you and share all these wonderful resources with you.

Thank you so much for listening to today's episode. This idea has been on my mind for quite a while, and I'm very glad that I had the opportunity to share with you some of the less glamorous aspects of being legally blind. With that being said, I did not make this episode intending to depress people. And I think that there is a lot we can do as a community to push for meaningful change. In fact, I think within the next several years or decades, these barriers will be less significant in my life as technology advances. And as people hopefully become more tolerant.

If you liked today's episode, make sure to subscribe to Legally Blonde & Blind on Spotify, Apple podcasts, and anywhere else you get your shows. You can also follow my social media pages on Facebook and on Instagram @legallybb_ for updates.

Thank you for listening. And I hope to SEE you soon!


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