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10. Sharing my Story: Writing about Blindness and Disability


I've done the math. Well sort of, I've done a rough estimate. I have made nine episodes of Legally Blonde & Blind. Each of those episodes, except for the last one, which was a little over an hour, were approximately 25 minutes. That means that I have spent over 200 minutes talking about my blindness in some way, shape, or form. And I don't even feel like I'm nearly close to being done with sharing my story. So, how did I summarize all of these experiences with blindness into one cohesive 650-word essay for my college applications? Well, that's what we're here to talk about today. I'm Marissa Nissley and thank you for tuning into the 10th episode of Legally Blonde & Blind.


*Intro Music*


Hello, everyone. Welcome back to another episode of Legally Blonde & Blind. I hope you all are doing well. As of recording this right now, I am back in New Jersey, which I thought would lead to a less hectic recording environment, but my family just got a new puppy. So he causes complications if you will. I wish I could introduce you all to him, but he doesn't bark very often. And given that this is a podcast, I don't really have many other ways of showing you him. Alrighty. How about this? Since I started the process of adding alt text or image descriptions to all of my social media posts on Facebook and Instagram. Yes. I know it's ridiculous that I had not already been doing that, but we're working on it. Anyways, I will give you an image description of my new puppy bear. So bear is a lab mix. He's a rescue. So we don't really know exactly what he is, but he looks mostly lab. He has long fur. It's mostly black, but it also has some brown hinges in it. Like, especially if he's in the sun. So we don't really know if he'll be a black lab or more like a chocolate lab. I guess only time will tell. He has very big paws. He has big brown eyes. He sits very well. He has wonderful posture and we currently have a turquoise collar for him. Anyways, I locked myself in my basement, which is the only room Bear doesn't go into. And I am ready to get started.


I'll start with my usual, why I decided to make this episode and what inspired me to talk about this. Whether it be for a college essay school project, a podcast, a social media post, or an op-ed piece, you may want to write about your blindness at some point in your life. I knew I wanted to write my common application essay about my experience with blindness and albinism. And if you're not in the college applications bubble, the common application is this service that many colleges in the United States use where students can submit one application to multiple schools, making the process a little bit easier. Anyways, the common application has a personal narrative essay that in 650 words or less, you can pretty much talk about anything you want. The prompts are very open-ended. So there was that. And I also knew I wanted to apply for several blind scholarships, which I highly recommend you do. Some of them will ask you to write about some of the challenges you've encountered and some of your experiences with blindness. Anyways, when I found myself sitting down to write the first draft of my essay, I was completely lost.


Firstly, I hate writing about myself. It doesn't even have to be about blindness. Anything relating to me. I'm like, “no, no, no, no, no, no, no, no, no.” But looking back on this treacherous process, I realized that a lot of my struggles had to do with the way in which disability is presented in the media. There are very limited resources regarding writing college application essays about disability and specifically blindness. I knew I would have loved some guidance, especially from other blind students. So that is the main reason I am creating this episode. However, I did not want this episode to only be about college applications. So my first part talking about some of the struggles I had telling my story is more general and can be enjoyed by anyone.


I want to make a quick disclaimer before I get into this episode, I am not an English teacher, a guidance counselor, or a college admissions expert. These are only suggestions that have helped me personally. Do not take these as hard and fast rules. I also want to try my best to avoid playing into the where you get into college is life or death narrative. I know in high school, I would find it really stressful when people would say things like, “oh, colleges want you to do this or colleges like it when you do that” as if what you did for those four years in your life would be entirely dictated by what some admissions officer would like to see. I don't want to imply that at all, these are just some tips that can help you in the writing process. It is not the end of the world. I needed to hear that at least 10,000 times when I was in high school. So if there are any listeners right now in the college applications process, as we speak, I feel for you, it is not easy.


So the first trend that I noticed looking back that made it challenging for me to share my story is this concept called inspiration porn, which the TV Speechless defines as the portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people. This was a term coined by disability activist Stella Young in 2012. She has an amazing Ted Talk about this. If you haven't already watched it, I highly recommend you do. I really wish I had watched it in high school because it was exactly what I was trying to describe in my college essay.


She specifically chose the word porn to describe this narrative because just like regular pornography, this type of presentation involves the objectification of disabled people for the benefit of able-bodied people. She explains in her Ted Talk that people aren't used to seeing disabled teachers, coworkers, doctors, or friends in their life. They are more used to seeing disabled people in inspirational posters or giving motivational speeches. Some examples that you might've seen throughout your life include, it could be a picture of a disabled athlete with the caption. “What's your excuse”, or “the only disability in life is a bad attitude.” Another story that I've seen a few times around is if somebody asks a disabled person to prom or homecoming, they're lauded as this hero for asking this person, despite their condition. One that I found in an article while I was doing research for this episode said he asked her to prom, even in her condition. And this was somebody in a wheelchair and it said one like or share equals respect.


Some key characteristics in all of these examples include praising a disabled person for walking, getting out of bed, or doing any other daily living tasks that people wouldn't raise an eyebrow for if an able-bodied person did it. Secondly, praising an able-bodied person for spending time with someone with a disability, like asking them to prom or having them on their sports team. Again, if you ask an able-bodied person to prom, there probably wouldn't be a news article about it. And finally it involves a cheesy quote about having a positive attitude or working hard.


I find the last characteristic the most prevalent and frustrating in my own life. I will see many quotes on my Facebook feed about staying positive, persevering, and keeping your faith in light of a chronic illness, disability, or any other hardship. The problem with this is that as Stella Young puts it in her Ted Talk, “no amount of smiling is going to make a building wheelchair accessible.” There are barriers that the disabled community faces that are outside of our control that having a positive attitude and persevering alone can not fix and presenting something like blindness in particular as something that can be overcome with a good attitude. I feel that it puts all of the pressure on me to change it. It doesn’t ask able-bodied people to look at their surroundings and think, how could we make this work accessible for a blind person? It's no, no, no, no, no, no. You just have to smile.


The problem that this prevailing narrative presented to me when I was trying to write about my blindness was that, as silly as it sounds. I wasn't used to seeing blind people just existing in TV shows and movies. I felt like I either had to conform to the narrative that blindness is inherently insufferable, which I didn't feel like fit my experience, or I had to do something amazing to outshine it, which, unfortunately, I haven't cured cancer either. I didn't want the main takeaway from my essay to be “Wow. It's so great that she's going to school. I'm very proud of her for getting out of bed.” I didn't want to be praised for simply existing. Like I was talking about in the first episode of my podcast, The Art of the Blind Joke, I think another huge problem with inspiration porn and other stories surrounding disabled people in the media is that they're often told by able-bodied people, which means that I wasn't used to seeing disabled writers express themselves. And I didn't really know where to find those resources.


Another challenge that I faced in this writing process was thinking that my challenge wasn’t significant enough. When I was doing research for this episode, I came across a bunch of articles talking about the quote unquote overcoming challenges essay in the whole college prep world, meaning that this type of essay where you talk about some sort of setback or challenge you face is literally a genre. There are plenty of challenges I've seen people write about ranging from not making it on the soccer team or having to choose between the sport and theater to a death in the family, cancer, poverty, et cetera.


I remember thinking that because I have a lot of remaining vision and I have the same vision I was born with, so I haven't experienced any vision loss. I thought, well, relative to other blind people, I probably have it pretty good. And especially outside of blindness. I am a white middle-class girl living in the suburbs. So I don't really feel like I didn't really feel like I was in the position to complain if you will, because I was privileged in so many other areas. When I was in high school, I remember there was this very toxic culture where people would almost try to rank the different types of challenges you could go through. Like people would say things like, “oh, I could write about being queer, being a woman.” And people would say to me that I sort of have an advantage in that sense, because I had a disability. Anyways. I don't think it's fair to rank these types of challenges in this way, because the significance is not like how horrible your life was, right? It's about how these hardships you're writing about influenced you and made you the person you are today. So outside of challenges like, “oh, I couldn't use my dad's boat this weekend.” I think it's perfectly valid to write about your hardships and how they influenced you. I think in fact, if you can strike a balance where you admit areas in which you are privileged, I think that conveys a sense of maturity. The fact that you can see the world beyond your own personal little book.


The next sentiment I struggled with, and this is going to make me kind of angry. I'm going to give an unsolicited pep talk about this because I don't want anyone to feel the way that I used to about it. I felt that I was playing the blind card or using blindness to my advantage. When you talk about college applications, you'll often hear people say or at least imply that if you're a woman ethnic minority, disabled, et cetera, you somehow have a leg up in the college applications process. I remember people would joke about changing their names so they sounded less white putting down that they were native American, even if they weren't. Yes, I was applying for college during the 2020 democratic primary. It came up a lot.


Anyways, let me go off on my rant. Colleges want diverse campuses with people that have different perspectives. It creates a better learning environment and it makes their college campus less of a bubble than it inherently is. If you write about how your disability gives you a unique perspective in a certain academic field or just in life in general, there is nothing wrong with that. It does not mean that you would otherwise be unqualified. They're not just going to snatch up random people to put on the pamphlets. They want you to actually be successful in the classroom. And if they didn't think you could be successful at that school, they wouldn't pick you. Do not let people diminish your accomplishments because of your disability.


There was a time in high school. It wasn't related to college, but I was picked to be a captain of a team and somebody else was upset that they did not get the position. And they alleged that the reason I got it was because of my visual impairment. Now, this killed me at the time I remember feeling so on edge at these practices. I felt like I had to be perfect as an attorney because if I wasn't, then it would prove that like, they only picked me because of my blindness, but what helped me get over it was thinking about where is this person coming from? The people that say these types of things, they're resentful that they didn't get this position or that they didn't get accepted to an Ivy League college. It has a lot more to do with them than it does with you.


Now that I've shared some of the challenges I encountered while writing college and scholarship essays about my blindness, I wanted to give some tips. If you're in the position where you're questioning whether or not, you should write about your disability or disclose it in the first place. What's interesting about being disabled is that you're not going to have to check a box for it. Right? They might ask your gender, they might ask your race, your religion, but there's usually not going to be a box that’s going to be like, “are you disabled? Yes or no.” So you could go through your entire application process without saying a word about it.


So what are some reasons you should share it? Well, firstly, I think if you believe that it is a fundamental part of who you are and your identity, then you should definitely write about it. I was talking a bit about this in my episode, specifically, relating to albinism about how I sometimes feel like person-first language and other notions like, “oh, your albinism doesn't define you” kind of put you in this box where you have to separate your disability from the rest of your identity and personality. When in fact, I believe they're very closely intertwined. I don't know if any other blind kids had to go through this. But I remember when I was in elementary school, we would have a mini-presentation, if you will, where we would talk about my visual impairment and say to students, like, if you want to get Marissa's attention, it might be better to call her name instead of waving at her because she's never going to see you.” I don't remember this occurring in my presentation specifically because I was a very small human, but I remember I would see in the NOAH parent groups or other albinism groups, they would show sample flyers or presentations their kids would use. And sometimes they would start off with something like, “hi, my name is Marissa. I like to play soccer and pink is my favorite color. And oh, I have albinism. What is that like?” Person-first language is designed to reinforce that you are in fact the person, but I also felt like these narratives didn't give me the space to acknowledge that, “Hey, my albinism does influence my life and my experiences, my mindset, personality, et cetera.” And that's okay. It doesn't mean that it defines me rather. It doesn't mean it's the only thing that defines me.


Secondly, if your blindness relates to academic interests or extracurricular activities of yours, if you're heavily involved in your National Federation of the Blind student division in your state, for example, you might want to write about that because you're probably doing some really cool and impactful advocacy work. If you're interested in things like genetics, public policy, health care, and assistive technology, you might want to write about how your blindness influenced your interest in those areas.


And finally, if you want the people reading your essay to know you beyond your resume, I think it can be very easy to fall into this trap, especially if you don't know what to write about, you can turn into, “oh, I did this and this and that.” Basically your resume in paragraph form. But I think talking about your experiences and possibly struggles with blindness can give you a sense of humanity. You can talk about your personality, your work ethic. It can give more insight into who you are as a person. And at least for me, it required some degree of vulnerability to share.


Now, what are some reasons you shouldn't write about it? Like I was saying at the beginning of this episode, writing about your blindness, especially for things like college essays, isn't for everyone. And you shouldn't feel obligated to be this sort of ambassador, just because you were born with a certain identity.


Firstly, if you can't think of anything else, then it's probably not the best topic to write about. I was in this position. It seemed like at first my blindness was the default topic I would write about for a college essay because it seems, I guess, to people, it would seem the most obvious challenge that I encountered in my life. But if there isn't anything unique you can share from your experiences and challenges, then I wouldn't recommend writing about it because everyone knows that it's hard when you can't see things, it's not going to change anyone's perspective and it's probably going to be very forgettable.


Secondly, external pressures. I know, at least for me, when you're in the midst of the college application process, there will be teachers, friends, guidance, counselors, and parents, all of whom are trying to give you advice. And obviously, they all want the best for you, but they can often give conflicting opinions or guidelines. But ultimately, you know yourself better than anyone else. And you're the only one who can make the decision about whether or not your blindness is something that you should share. People may want you to because they think it could give you an advantage or people may not want you to because they think people will discriminate against you. I think it's great to have people in your life who want to help you along in this process and share their concerns, but it's up to you and you alone.


And finally, if you're still struggling to accept your blindness, it may not be what you want to write about. I think what's challenging about college essays is that you're expected to, in 600 words, reach some sort of epiphany about this challenge that you've been facing, but you may have only been diagnosed a few years ago. You may have only just started to lose your vision. You may not be at that place yet in your life. I mean, if you're not at that point yet in your life, you don’t want to fake it or pretend you have this very positive outlook. On the other hand, you don't want to be too negative about it either. You don't want this person's takeaway from your essay. “Wow. This person's really resentful about losing their vision.“ It's totally okay to feel that way. This just may not be the place where you want to express that.


Now that I have relived my college essay, writing trauma and have given some advice about whether or not to disclose your disability in the first place. I now want to share some tips for you if you want to write an essay. I think these tips could apply to talking about disability on any written platform, but I'm mostly targeting these tips toward college and scholarship essays. And before we get started, I want to say once again, I am not an English teacher or a guidance counselor. These are just some tips I gathered from my own experience. I am by no means an expert on writing or college applications. This is just one woman's advice.


Now, my first tip is when you're in the brainstorming process. I think the first thing you want to come up with is your insight if you will. What is it that you're trying to convey that you realized, experienced, learned about yourself, et cetera Like I've been saying throughout this entire episode if you write about how it's hard not to be able to see things you're not really going to change anyone's worldview, or it's not really going to lead to any profound conclusion.


But if you're anything like I was in my senior year, you may be thinking, “I have no idea what about my blindness to talk about or how to put it in the 650 words”. So I came up with some questions that can help with the brainstorming process and I'll read them for you now. And then I'm also going to make an Instagram post with these questions. So hopefully this will help you come up with a few ideas.


Firstly, did your blindness influence any of your academic interests? Like I was saying before if you're interested in things like public policy, healthcare, or genetics, and how it relates to your blindness, you might want to talk about that. Has blindness caused you to have a different perspective and the activities you do, does it change the way that you do sports, play instruments, or create art? Does your experience lead you to any unique insights about disability? Does it lead you to identify unique stereotypes and narratives surrounding disabled people? Did your disability impact your work ethic? And finally, how does your disability intersect with other identities of yours or your culture?


All of these topics can show how your blindness intersects with your cultural background, hobbies, your personality, all of these help paint a picture of you as a whole person. It's not just your blindness isolated. It's your blindness as a characteristic, as something that has influenced your life and has given you a new perspective.


Now that you've come up with some sort of theme or insight you want your essay to focus on next, you need to figure out how you want to convey it. My next tip for you is to focus on stories. Human beings like stories and stories are memorable. If you think about it, the person reading your essay has probably read dozens, If not hundreds of other student essays, you want something that is memorable. That'll help you stand out. Try to think of an anecdote or two that relate to the broader theme that you're trying to focus on. If you're stuck, I recommend starting with the most awkward and or funny encounters that you've ever had as a blind person. Trust me. It'll take you somewhere. Think of the time when that lady told me I was giving her a headache because I was looking too close at my phone or when I was running around the haunted house aimlessly because I didn't know where it was going.


Once you have a few story ideas, you want to find the right scope. And I think this is one of the most challenging aspects of a college essay for anyone, not just someone writing about a disability, you don't want something too broad that you can't really elaborate on in 650 words, but you also don't want something that's too narrow. You don't want it just to focus on one day of your life. I would recommend picking a story that's interesting and that hooks the reader in, but does not take too long to explain. You don't want your entire paper explaining the complicated context behind one comment that you received in high school.


And as you get started writing this narrative, my next tip for you is to avoid being too positive or too negative. I think there are two things that can happen if you're uncomfortable with writing about yourself. And especially if you're uncomfortable about being vulnerable in this type of essay. The first thing is that you could sugarcoat it. You can make it seem like it's always been rainbows and sunshine, and it's never really been that much of a problem. And you're always a super upbeat and positive person. Or you could even unintentionally sound very negative in your head. I think this happens because people don't want to brag about themselves. They don't want to seem conceited, but like I was saying, you don't want somebody to take away regardless of whether or not you're writing about blindness to be, “wow, this person seems bitter.”


I think the best way to avoid either of these pitfalls is to have other people read your essay. This could be a teacher or a trusted friend, a parent. I don't recommend having too many people reading it. You want it to ultimately be your voice. And I think if you have too many sets of eyes on it, it can start to lead to some conflicting opinions or ideas, but you definitely want an outsider to check it out. And if you have other friends with visual impairments, I actually don't recommend that they read your essay, especially if they're planning on writing something similar. More likely than not the person reading your essay is going to be sighted. So you want to see how it comes off to them.


Finally, I'm going to share some quick writing tips that don't require too much explanation.


Firstly, do not spend too much time explaining your condition. Web MD exists. If the person reading your essay does not know what it is and wants to learn more. They can always look it up, but you do have limited space and pretty much in most cases, the gist of it is you can't see very well.


Next, start early. I cannot emphasize this enough. This will help you so much and put so much stress off of you. If you can get your essay mostly done before the beginning of your senior year, it will be such a relief. Trust me, I recommend spending most of your time writing your essay the summer before. So it can be the main thing that you focus on and you still have several months before you ever have to submit those applications.


Lastly, this is probably the biggest piece of advice I needed in high school. Write something down, even if you think it's complete crap, just get a first draft done. Even if you think it's terrible, it's good to have something to start with. And every draft after the first will be less and less awful. I absolutely despise writing about myself and I would feel so insecure if anyone read one of my rough drafts for really any of my essays, but especially with something that's about me, it does not have to be perfect. Just getting started is a huge step because that is honestly the hardest part in this entire process is just getting those first few sentences down.


Now, I know I said this at the beginning of this episode, but I would like to say it again while it may seem like it is in high school, where you end up applying and getting accepted to college is not the end of the world. I think the most important thing that you can do in this entire process stays true to yourself. Don't feel the need to change your story, the activities you're in, or your classes just because you want to please somebody else.


But anyway, I hope that this episode has helped you out and made this treacherous process a little less painful. If you liked this episode and want to listen to more, make sure to subscribe to Legally Blonde & Blind on Spotify, Apple Podcasts, or wherever you listen to your podcasts. Also make sure to check out my social media pages, my Instagram @legallybb_, my Facebook page, and my Twitter account, which has the same username. I know. I just made a Twitter account. It has two followers, so I don't know how many people there are really engaged in that one. I don't use Twitter personally either. So I barely know how it works to be completely honest with you, but you know, new frontiers for we're getting somewhere. Anyways. I hope you enjoy the rest of your summer. And I hope to SEE you soon!


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