​Esther Rosi-Kessel: I'm a high school senior, which means that for the past 13 years and for at least the next few years, school has been and will be one of the major parts of my life. But being a student with Albinism brings some experiences that you might not expect. Hello and welcome back to Albinism More Than Meets the Eye, a podcast that explores the realities and lived experiences of people with albinism.

I'm your host, Esther Rosi -Kessel. Today I'm talking to Marissa Nissley, a college student and the host of the podcast, Legally Blonde and Blind. Her podcast covers all things related to being a blind student or a student with albinism. So today we're talking about school, what it's like to be a student with albinism, and what we want to see improve in terms of how students with albinism, visual impairments, or disabilities in general are treated.

Before we start, I just want to go over a couple of pieces of Termin. That you're going to need to know for this interview, specifically the terms IEP and 504 plan. Both individualized educational programs or IEPs, and 504 plans are legal documents that provide accommodations for students with disabilities.

The primary difference is that an IEP provides both accommodations and special education services while a 504 plan mainly only provides accommodation. Many visually impaired students have IEPs, which include both accommodations for their vision and services, such as meeting with an orientation and mobility instructor who helps them learn to navigate their environment independently, and a teacher of the visually impaired who helps them with skills specific to their visual impairment. And now let's hear from Marissa. Welcome to the podcast. 

Marissa Nissley: Thank you so much for having me. I'm really excited to share a bit about myself. 

Esther Rosi-Kessel: So can you just tell the audience a little bit about what you do and who you 

are?

Marissa Nissley: Yeah, sure. So I am currently a junior at Georgetown University. I'm studying management and accounting with a minor in disability studies. I started my own podcast called Legally Blonde and Blind two years ago about my experiences as a college student with albinism. And since then I have been talking about everything from using humor to talk about my disability, employment, college accommodations, anything you could think of that relates to being a blind student. 

Esther Rosi-Kessel: And also one thing that's kind of interesting that I wanna touch on is that you actually prefer the term albino to person with albinism. 

Marissa Nissley: I do, yes.

Esther Rosi-Kessel: Can you explain why you prefer albino? Because I have said in previous episodes that it's a very personal preference

Marissa Nissley: and I think that's a great way to start this whole conversation about that is it is ultimately a personal preference. And when in doubt you should ask or default to person first language as to not offend like a stranger.

But the reason I prefer the term albino is because I like to think of albinism as a characteristic and a part of who I am. I think the term sounds a little less clinical and medical. I think it's more of an acknowledgement as that it's part of my identity. It's much like someone's gender or race or religion.

It is part of who I am and that's why I choose to use that. It shouldn't be an insult. It shouldn't be something you shy away from. 

Esther Rosi-Kessel: It shouldn't. For me, I will use it about myself, and I don't mind if other people with albinism call me albino because it's just like we talk about each other like that. But I generally prefer when non albinos don't call me albino, just because I feel like there's a sort of association with the albino white hair, red eyes, like the movie stereotype or albino rats or you know, rabbits or whatever.

But I also think that, I don't want it to just sound super clinical, like you said. That's an interesting dichotomy. 

Marissa Nissley: Yeah, I agree. Generally, my family and friends, I'm totally okay with them using it. I think for anyone, regardless of who you are, you shouldn't be like shouting across the room like, oh, hey, there's that albino.

Yeah, I definitely don't appreciate that, but I do think we can take back the word. Make it something that isn't a slur or an insult. 

Esther Rosi-Kessel: Yeah, definitely. In your experience, how do you think students with albinism are treated in an educational setting by their teachers or their peers? 

Marissa Nissley: Well, unfortunately, albinism like many other disabilities, brings about a lot of discomfort in people.

And so I think for the most part, in most school systems, I don't wanna generalize, but I think albinism is treated largely as a negative, an impairment, something that makes your life harder. Um, I think with teachers in particular, I see two extremes with it. There's either one end of the spectrum where they're so worried about you doing anything, that they underestimate your capabilities and they don't really give you the opportunity to learn on your own and to kind of spread your wings because they're anxious about you doing anything. It could even just be like going outside. And I'd say the other end of it is there are a lot of people, and fortunately I'm not one of them, that have experienced teachers that have tried to minimize it and ignore it almost. And not provide the accommodations that they're legally obligated to.

So overall, I'd say it's, it's quite a challenge I think. We're pretty far from a point where people view albinism as more of a neutral thing. I think now it's mostly just, oh, you're blind. That's a shame. 

Esther Rosi-Kessel: Right. I just had a funny memory that, um, my friend told me that what she remembered about me from kindergarten was that I wasn't allowed to use scissors.

Like apparently the teachers were afraid that I was gonna cut myself if I used scissors. So they would cut things for me. I don't know. I mean, I might've cut myself, who knows? But, 

Marissa Nissley: well, it's scare, I think it's challenging for educators in particular because they, if they're in a general education system, they probably have not had an experience working with a blind, or a visually impaired child.

So they don't know what the expectations are. And they don't really know how to act. 

Esther Rosi-Kessel: Yeah, no. A lot of teachers kind of think that we are either less capable or. Need to like kind of be protected in some way. That's the sense that I've gotten.

Marissa Nissley: And I'd say the same almost goes with peers, with people our own age. While we're going through the school system, it's either something that they're almost afraid to talk about and try to ignore. Or in the case of some people, which again, fortunately I wasn't really in that case, they get bullied for it. It's something you're made fun of for, and that's why so many people to the first question you had, that's why so many people don't like the term albino because for a lot of us it was hurled as an insult.

Esther Rosi-Kessel: I was never bullied specifically because of my albinism and visual impairment, but I was bullied and I don't think that standing out for like the teachers, uh, treating me differently or like holding things closer to my face helped. So how do you think visual impair ment and albinism affects how students view themselves?

Marissa Nissley: I made an episode about this a while ago. It was called Gifted and Talented Blind Kids. And this isn't, this doesn't go for everybody, but I think a lot of us in the community, Feel this sort of pressure to prove ourselves and to be overachiever in the classroom because we see these low expectations that teachers or even parents have for us.

We almost feel this need to say, Look at me, I can get straight A's. I can get X score on the SAT despite my visual impairment. And it creates a lot of pressure, I believe. 

Esther Rosi-Kessel: Yeah, I kind of think, when I was younger, I always thought that when I did something wrong or when a teacher gave me a lower grade, I would think that that meant that they thought that because I messed up on one assignment that I was, you know, just not smart. Which it's kind of a silly way to think. That was, that was how I perceived it. And I really doubt that my teachers actually thought that. But you know, 

Marissa Nissley: and what the scary thing too is when you're the only person with albinism someone has ever met, right? Or the only blind person someone's met, you get the fear that if I don't act completely perfect and competent, like I have everything together, that they're going to discount not only me, but everyone else with my condition.

And that's really stressful. It's not a burden you should put on yourself, but I mean, a lot of people do feel that way, including myself sometimes. 

Esther Rosi-Kessel: Yeah. How has your view of yourself as a student changed over time? 

Marissa Nissley: Oh, so much. So much. So when I was in, when I was in middle school and high school, I was your stereotypical overachiever.

I did mock trial, I did deca, which was like a business competition. I always had straight A's. I was desperately avoiding getting a B. I was deathly afraid of lowering that GPA . I obsessed over colleges and like I said, I think a good part of that came from that pressure I felt to prove myself feeling like I had to show that, hey, I'm the smart girl, almost.

So that people wouldn't focus on my blindness because I noticed that when I did really well in school, even at a very young age, people would start to focus on that instead of the disability. And as someone who was deeply uncomfortable being disabled, at the time, I wanted his least amount of attention towards it.

But as I got into college, and I think this happens, especially for people who aren't thinking about going into grad school, you start thinking more broadly. What am I interested in? What do I want to do after I graduate when there isn't going to be a grade for every single thing that I turn in? And that led me to a place where I realized that I didn't need to prove myself like I thought I did.

That you know, I'm, I have value that I deserve to take up space, and that my value isn't dictated. Grades or a test score or even like the amount of followers on social media, all of those things, those are just numbers. 

Esther Rosi-Kessel: On the level of accommodations and things like that. How is college different from high school for you?

Marissa Nissley: So I'd say college is different from high school because there is more of a burden on you to fulfill your accommodations. You're not going to have a high school guidance counselor or vision teacher that's going to do everything for. So I'd say to anybody who is about to make that transition, I would look into what materials your school requires as early as possible.

Like I started the accommodations process in May, uh, before I started school, and it, it didn't take two months to do, but it was nice getting it out of the way and getting it covered. Generally, you want something like if you've had an IEP or a 504 , a functional vision as. Or like a letter from your ophthalmologist or primary care doctor.

So just getting those documents together is really important. And just the idea that like no one is going to hunt you down and make you get accommodations. You have to do it for yourself. And if you don't like start early in the semester, you can basically end up in a position. The paperwork hasn't gone through and you have to do a test without accommodations, so it's really important to hop on it as soon as possible.

Esther Rosi-Kessel: One thing that I've experienced is, and I'm guessing a lot of other visually impaired or other, People with other disabilities have experienced is that in high school we're, we're kind of told that we have to advocate for ourselves, and I remember in like ninth grade, I hated that. Then I kind of found that once I started talking about it more and started advocating for myself more, I think that my teachers kind of understood what was going on with me more, and that helped them treat me more like a "regular student".

Marissa Nissley: What's interesting is what I did in high school. I believe, at least at the end of middle school, was that I would have a meeting with all of my teachers, like the week before I started school to explain all of my accommodations and my visual impairment. And I, I don't, I don't remember exactly how that originated.

I think it was, I heard about one of my IEP meetings in fifth grade and I was like, why am I not in the room when they're talking about me? But it's been a really powerful way to advocate for myself in front of teachers. To slowly build that confidence over time. Like it's a, it is such a process. 

Esther Rosi-Kessel: I didn't attend my IEP meeting until 11th grade because my ninth grade IEP meeting was online. That was when Covid hit. 

Marissa Nissley: Oh, yes. The pandemic. 

Esther Rosi-Kessel: I, I went to like a few minutes of it. But the 11th grade one, that was the first time that I really gotten to like be a part of that. And it wasn't, it was a little bit weird because hearing all these people just like talking about me as if I wasn't there, felt very jarring, I guess.

But. It did kind of help me get to actually have a say in what was going into my IEP.

Marissa Nissley: and it's challenging with IEPs because there are a lot of assumptions that educators make about people with them, like the idea that there's usually the assumption that it's some kind of behavioral or learning disability.

And I remember that some of my teachers would be shocked that I was in their AP class or their honors class. I think because they went into it assuming that I would be in their, like, lower level one. 

Esther Rosi-Kessel: I had an experience in 10th grade. I, I have no idea if this actually had anything to do with my IEP , but I, I just like have this like vivid memory of being in online school and we were doing this thing where we had to, we, we could volunteer to play a character. in a Dr. Phil show based on this book we were reading, and I volunteered to play one of the characters, and I remember my teacher being like, oh, okay. Yeah, sure. Like she was so surprised that I would volunteer to do that. And then she gave me a 10 out of 10. 

Marissa Nissley: So there you go. 

Esther Rosi-Kessel: When you were younger, is there anything you would've liked teachers to have done differently to make you feel more comfortable? Or are there things that teachers did that you really appreciated ? 

Marissa Nissley: Sure. I think first to my point that I was saying earlier, I wish more people, teachers, and students approach disability from a standpoint of curiosity rather than fear. I think being open to asking me questions and not treating it like it was something to hide or that it was something like quote unquote special that had to be given in like a presentation would've been very helpful.

I remember in first, I believe it was my vision teacher who they did like this exercise where they had all of the students, it was so silly. They put basically like, you know, like those Ziploc bags, they like made little eye masks out of them and had them put it over their eyes so that they could see what my world looked like it, and actually it's kind of accurate.

So, but it was cool for them to get a bit of an understanding of what it was like from my perspective. So I think more things like, Less about like, oh, this is this weird thing, and more of like, oh, this is just how she sees and interacts with the world. 

Esther Rosi-Kessel: Right. Another thing that I feel like happens a lot is that teachers will call out students, especially like when you're not super comfortable with talking about your disability, if you get called out in class for that, It can be really uncomfortable.

Even I consider myself to be like pretty comfortable talking about having albinism. I mean, I'm making a podcast about it, but it still feels so weird to me when teachers will talk to me like, stop class and come talk to me about whatever. 

Marissa Nissley: Yes. Another thing I did not like with teachers is like, Sort of backhanded compliments. When they're like, oh, I see how much you struggle every day. Even just to read things. But you do so well like that. That's not a compliment. 

Esther Rosi-Kessel: Yeah. I had a teacher last year who like, She was, I, she meant well, I could tell, but like, she would be, I chose to not sit near the board. I don't know why. I just like had friends on the other side of the classroom and I had a phone, so I could just zoom in on the board, but she would be writing on the board and then walk over to the other side of the room and be like, can you see that?

And I'd be like, no, but I, I have ways of figuring out what it says. Or there was another thing where we were like labeling a diagram and she had the labels on the screen and I actually was not that far from the screen, but I couldn't read them. And I, I was just like listening and writing down what she said and she came over to me and she was like, do you need me to like write this down?

And I was like, no, I'm getting it. And she's like, oh my gosh, you're so amazing. Like, what? 

Marissa Nissley: Yeah, it's not, it's not really a compliment for, to say like, somebody who is blind is amazing. Or inspirational just for doing something normal, like writing something down on a piece of paper. It's very insulting in my opinion.

Esther Rosi-Kessel: Yeah. I mean, like, I don't, another thing is I think people don't realize that you don't need to see everything. Like I, I don't need to see exactly where on the diagram this is, because if you say where it is, if you say the number on the diagram, I'll just write what, whatever it is. 

Marissa Nissley: Yeah. No, I, I agree with that.

I think it's, I mean, obviously, Having a visual disability does bring about challenges, but it's not the end of the world exactly like this's. What's funny about blindness to me is that people view it as this like massive tragedy. Like if you look at research, people often equate it to things like heart disease or HIV/AIDS , and it's like, Being blind isn't going to kill you. I think we need to be reminded of that more often. 

Esther Rosi-Kessel: I was just reminded of this recent as, as of when I'm recording this, this recent video from Mr. Beast. 

Marissa Nissley: Oh yes. 

Esther Rosi-Kessel: He cures a thousand blind people. 

Marissa Nissley: Yeah, they had cataracts, I believe. 

Esther Rosi-Kessel: Yeah. And obviously I'm happy for them if they wanted the surgery, then . Great. It does say something about our healthcare system that they have a YouTuber pay for this and not their insurance, 

Marissa Nissley: but the way that he talked about blindness as if they could never get a job or have a normal life without his, his generosity. 

Esther Rosi-Kessel: Yeah, and a lot of my issue with it is people's reactions to the video. People will say, oh, how could anyone hate Mr. Beast? He is doing these amazing things and I. Sure, that's great. But I don't know, people were kind of acting as if he did the most amazing thing that like anyone has ever done. 

Marissa Nissley: Yeah. And I think what what was hard about that video too was that he was talking about, he was quote unquote curing one very particular cause of blindness in visual impairment, whereas like a lot of. Our conditions like albinism for example. You know, you really can't do anything about it. And there are a lot of people, myself included, who don't really want to cure. Exactly. And he didn't acknowledge that at all.

Esther Rosi-Kessel: Yeah. So back to what I was talking about before, if you could talk to a younger kid with albinism or a younger version of yourself, what advice would you give them as they learn to navigate school with a visual impairment? 

Marissa Nissley: So much. One, I would say is to. Be confident in sharing your story. Mm-hmm. You have a valuable perspective and you should share it.

It doesn't have to be something you need to hide, and this is especially prevalent when discussing things like college admissions, disclosing you have a disability and how that impacts your worldview is not like giving yourself a leg up. I don't know if you've encountered people who have said things like, oh, well, you know, if you write this sob story about being blind, you'll have a better chance of getting into Georgetown.

That's not. I think disability gives you a unique and valuable perspective that is worth sharing and does not mean you're taking advantage of the system. The second thing I would say is to explore different kinds of mobility aids and tools. I was very, very stubborn in high school. I did not want to use anything besides my laptop and my iPad.

I refused to learn how to use a cane. Um, now I'm a guide dog user, so that clearly changed. But in high school, I was just completely against anything that would make me publicly present as blind. But I realized as I got older, like I value my confidence, my safety, my happiness more than I value blending in.

Esther Rosi-Kessel: And I've, I think I talked about this in my first intro episode to this podcast, that a lot of us kind of feel the need to like mask our visual impairment in a way. Yes. And I, I struggle with that too. 

Marissa Nissley: Because we don't look blind. 

Esther Rosi-Kessel: Yeah. One thing that I've noticed is like, like even though I'm like, you know, making a podcast about this, I still have a lot of issues with like doing anything that makes me seem different.

It's really 

Marissa Nissley: hard, like it's not a linear process of getting over it, but I would say go to a restaurant by yourself. I'm serious. It is such a confidence builder, like to just be allowed to exist in a space by yourself. You can just enjoy your surroundings. And the, the caveat to this is don't like don't stare at your phone the whole time.

Like bring a book and just enjoy it and acknowledge that like, Hey, I can take up space by myself. I don't need to provide a justification. It's a huge confidence builder. I did it today actually with Smalls. We got brunch. That's my guide dog's name by the way. Smalls. 

Esther Rosi-Kessel: My final question is, What is one thing you wish more people knew about life with albinism 

Marissa Nissley: that it's not entirely negative, that it also has added so much to my life.

I would say, I mean, just the fact that I created this podcast, all the amazing people I've met through legally blonde and blind and the blind community as a whole. My guide dog, I've only had her for a few weeks, but she makes me so happy. There's a lot of, there's a lot of joy and beauty in it, and it's not, Oh, this lame visual impairment.

Esther Rosi-Kessel: Yeah. I think that is really important to know. Thank you so much for coming on my podcast. 

Marissa Nissley: Thank you for having me. 

Esther Rosi-Kessel: I highly recommend that everyone check out Legally Blind and Blind on all the podcast places. 

Marissa Nissley: Yeah, it's on Spotify, apple Podcasts, YouTube, pretty much anywhere you look. I have, uh, social media, Instagram @ legallyblondeblind

I also have a Facebook and LinkedIn page, and then I have a website you can check out legallyblondeblind.com.

Esther Rosi-Kessel: It's a really great podcast, and even if you are not visually impaired, you can learn a lot from it. 

Marissa Nissley: It's funny people who listen to it sometimes, like my dad's friends. Mm-hmm. Like white men in their fifties and sixties.

Definitely not the target demographic for my podcast, but it's cool hearing from them. They're like, oh, I learned a lot about. Good for you. 

Esther Rosi-Kessel: Yeah, no, definitely. It's a really great podcast, and thank you so much for joining me today. I hope you enjoyed this episode of Albinism More Than Meets the Eye. Again, that was Marissa Nissley .

For more details about the things we talked about in this episode or to read a transcript, please check out meetstheeyepodcast.com. If you like this episode, please leave me a review or a comment. I'd love to hear from you. Thank you for listening!