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23. Making our Voices Heard: Albinism and Human Rights Advocacy (feat. Tess Ballis)

Marissa: On Legally Blonde & Blind, I often complain about some very trivial issues like dropping an AirPod or getting a rude comment about my pale complexion. But my hope today is that Tess and I can raise awareness for the discrimination and persecution people of albinism all over the globe, especially in sub-Saharan Africa, experience. Tess is a junior at Northwestern University who has collaborated with several nonprofit organizations, including Standing Voices and the South African Skin Cancer Foundation, to advocate for human rights and albinism awareness. Three years ago, she gave an amazing TED Talk titled “Albinos Don't Have Souls: What it means to Be Human From a Girl who has been told She is Not.”

I am so excited for you all to hear from Tess and listen to her story. She is so knowledgeable and has a lot of great ideas about how people can get involved in this mission. But first, I would like to give a bit of background talking about violence. Mutilations, kidnappings and discrimination against people with albinism is very challenging and maybe triggering for some of you. We won't get graphic in this episode, but it is inherently a very dark and difficult topic, so be sure to take care of yourself and check in with how you're feeling throughout this episode. There's nothing wrong with taking a break. It's important to be informed, but not at the cost of your mental health.

Anyways, there are a lot of dangerous misconceptions surrounding albinism. Some communities treat it like a curse or a disease that one can catch. They are often perceived as ghosts or subhuman, and most notably, there is the belief that bodies and body parts of albinos can be used for good fortune or to cure diseases. And these misconceptions have led to several reported kidnappings, mutilations, and murders. According to Under the Same Sun, over 620 attacks in over 30 countries have been reported since 2000. In Tanzania alone, it has been estimated that there were over 89 attacks and 79 murders since 2006. Many people with albinism in Southern and Eastern African countries also lack access to education and healthcare. In Tanzania, it is estimated that less than half of children with albinism are enrolled in primary school. Many lack access to sunscreen, hats, sunglasses, and UV protective gear, which leads to significantly higher rates of skin cancer. One estimate suggested that fewer than 10% of people with albinism in Tanzania live over the age of 30, largely due to skin cancer. These are outrageous and depressing realities, but it doesn't have to be this way. We have a voice. We aren't powerless, and I hope you will learn that from Tessa's story today.

*Intro Music*

Marissa: Welcome back to another episode of Legally Blonde and Blind. It has been quite a while since I've had a fellow legally blonde and blind guest on, but today I am happy to introduce you all to Tess. Tess, if you wanna take a minute to talk a bit about yourself, where you're from, where you go to school, some of your interests, go ahead.

Tess: Sure. Oh my God. Hi, I’m Tess Ballis. I'm 20, I'm a junior at Northwestern University, which is in Evanston, Illinois. I'm actually like 30 minutes from here. I'm from another Chicago suburb. I'm majoring in political science and history, hoping to go to law school. I Love reading. I love Model UN and I'm an editor of our undergrad law journal, which I absolutely love.

Marissa: Oh, that's really awesome. I know when I first came up with the name for this podcast, I had wanted to go to law school, but I no longer do, so I'm happy to hear that there is a Elle Woods with albinism representing us all.

Tess: Oh, I'm so excited about that. Legally Blonde is literally my favorite movie. Like when I saw the name of this podcast, I think I squealed.

Marissa: Anyways, we're here today to talk a bit about albinism and human rights advocacy. So I wanted to start off by asking you what sort of sparked your interest in this topic?

Tess: So my mom is actually a wonderful genius. She is a doctor who works for a nonprofit that focuses on research related to people with eye conditions. Obviously albinism is one of the big ones they focus on. And through that, she got in touch with a lot of people around the world and I learned about certain countries, such as Malawi and Tanzania and Mozambique, where there was violence against people with albinism based on sort of myths about things like limbs, hair, et cetera. And I just started feeling like I've never heard about this before and I'm someone with albinism. And that was really a shocking and uncomfortable feeling. And then realizing that because of, you know, my life circumstances where I was born in the world, that I was someone with the privileges and the resources to maybe be able to do something about it to the best of my ability. And I think being in the unique situation of having albinism of knowing about these problems and feeling a certain connection to them because of having albinism while also being fortunate enough to have the resources to do something about it, just made me kind of feel. It felt, I guess, really important to me.

Marissa: I think that it's really challenging when you first hear about these types of things. It's really shocking, especially as someone coming from the United States to hear about these stories. It's absolutely heartbreaking and it's kind of hard to find your place, to know where I can get started. But I think your nonprofit, your work in Standing Voice, which we'll get to a little later, I think those are all examples of places that you can start, even if you're only in high school or in college.

Tess: Absolutely.

Marissa: So for a bit of a background for those who might not be as familiar with what we're talking about here, could you give a bit of a brief crash course on some of the human rights abuses in African countries around the world regarding albinism?

Tess: Sure, absolutely. One kind of disclaimer I always like to give is that none of these situations are monolithic. I feel like a lot of times we're talking about regions in Eastern and southern Africa, and obviously no continent or even country is a monolith. But there are myths about magic with people being born with albinism, in their bones, in their hair, and their limbs. That can lead to things like sexual violence, grave desecration, kidnapping, murder, dismemberment. This is not meant to indicate any sort of like widespread ignorance or imply that at all. It is, however, something that does happen, especially in rural areas, a lot of times it has to do with profit and therefore sometimes law enforcement or government officials can be involved in making that profit, which can complicate the situation because sources of protection no longer are sources of protection.

Marissa: I think that's a great point to emphasize that it's not a monolith and we obviously are not experts. I included tons of resources in the show notes that people can take a look at to get some more perspectives on this issue. But I think it's a great place to start. And I know you mentioned this in your Ted Talk, which I will also link in the show notes, but could you talk a little bit about how you sort of learned about this?

Tess: That TED Talk was like three years ago. It makes me embarrassed. But there is a lot of good information there too. So those articles that my mom came across, or doctors in other regions of the world who she spoke to, kind of led me on my own search, I think when I was around 13. And there's a lot of good non-profits. I do think especially in more popular American or international newspapers, it doesn't always receive the same coverage, but there is some, and I think what was most striking is when there's, you know, names and ages of children and it's just, it's a really brutal thing to read and I'm glad that I know that information. I'm glad that I'm not ignorant about it. As you said, it is definitely an uncomfortable experience, especially, you know, when you have those names and ages, it's hard to feel distanced from it, especially when we share this identity with them.

Marissa: So I'm in a meditation and leadership class this semester, and one thing we had to do was write obituaries for ourselves.

Tess: Oh God.

Marissa: It was a very strange experience, but I remember I had to do this assignment at the same time as researching for this episode. And I think at our age we think that we're invincible, right? That nothing can happen to us. But then you hear about these stories of people with albinism who. around our age and you hear about this like mutilation and attacks and it, it really hits home. We're in a place where it doesn't really threaten our lives and our safety, right? So it's really shocking for someone from the United States to hear these stories.

Tess: Yeah. I absolutely agree and I think there is a little bit of a feeling for me, almost like “What did I do to have the luck to be born where I was born?” To be born in safety.

Marissa: Exactly. You know, and I think there's almost, because we’re from a predominantly white nation, we almost just look paler. I think we stand out a lot less.

Tess: Oh, I absolutely agree. I think that was something where I don't think I can directly speak on it, but I also know that.I would've appeared white regardless of my ethnicity. Obviously there are a lot of other complications and fears that I have the privilege to avoid.

Marissa: Exactly. I think people just look at me and say, “oh, there's a Scandinavian gal.” So, what is currently being done in the nonprofit space right now to address some of these issues?

Tess: There's a couple things. I know one big portion is ensuring health protections, which just makes things like self-advocacy easier when you have the kind of protections you need to avoid things like skin cancer that we're at a higher risk for, especially in areas with a lot of sun exposure. So I think those health protections are really important. Education of course, especially at a very community-based level, not something that's gonna be uniform. It needs to take kind of a grassroots form, which I think is super important. I think ensuring that the people who are supposed to protect us or protect individuals in high risk areas are on their side.

A really big thing that I am seeing a push for that I think is so important is to center the voices of people with albinism, especially those who are in those high risk areas, because a lot of times nonprofits are not founded in those areas, are founded by people who don't necessarily have those experiences or who might have a lot more privileges. And I love that work. I'm so glad that people are getting involved. But I am really glad to see a move toward centering the voices of the people who are most likely to be impacted.

Marissa: And I think with social media, it's easier to amplify these voices of people that we would traditionally ignore in the nonprofit space.

Tess: Absolutely.

Marissa: I remember when I was researching for this episode, reading Facebook posts and tweets from people with albinism in these regions and the type of social ostracization and discrimination they faced. It was really powerful for me.

Tess: I absolutely agree. Social media is a lot of things, but it does enable us to connect with people and hear voices that might otherwise, we might not have the opportunity to hear.

Marissa: Assuming Twitter stays afloat.

Tess: Oh god.

Marissa: And so when we talk about what's being done in the nonprofit space, where do you think the current gaps are? Like what more would you like to see done?

Tess: What more would I like to see done? That's a great question, and once again, I'm gonna do my little disclaimer that, you know, nonprofits aren't a monolith. There's a lot of nonprofits I think, who are already doing this. in general. Just a shift I would like to see is I still think there's a lot of cases where voices of people with albinism, specifically those in high risk areas versus people like me who have the resources we do. Those voices, I think, need to be centered and listened to more.

I also think non-uniform and more community level education is important. Sometimes just because of, you know, lack of resources or lack of ability to travel those educational materials do kind of turn out more uniform and then might not always be as helpful. They're still, you know, I'm still so grateful that they exist. I just think that is unfortunately just a gap that does exist right now. I also think, you know, sometimes there's a tendency when discussing this mythology, especially in relation to beliefs surrounding it that result in the violence, that there can be a sort of treatment or even like an exoticism that I don't think is bad intentioned, but I think sometimes does give that impression that is untrue of a widespread ignorance.

Marissa: Yes, and I think when you consider even popular media in the United States and the portrayal of albino characters as villains or those with powers, I remember seeing that movie Power that came out like years ago that was a bit distressing. I think I'd also say too, in the nonprofit space, that I'd like to see more of, for organizations that focus on albinism, not necessarily in this region specifically, just as a whole, I think there's a lot of emphasis on like the medical, like characteristics and impacts of albinism. Like that you're light sensitive or what genetic type of albinism you have. And I mean, those are important topics to research, but at the same time, we need to think about the social context and how it impacts us on our day-to-day lives. Because I don't know what type of albinism I have and it really doesn’t impact me, but what does is people's misconceptions about my albinism and my vision.

Tess: I absolutely agree with that. No one is like “ oh, she looks like oculocutaneous type two.”

Marissa: It’s really interesting because my parents never got me genetically tested and so when you hear, I think it's parents that love to talk about specific genetic data.

Tess: I think it’s comforting even if it doesn’t make that much of a difference.

Marissa: Exactly. And I'm like, okay good for you. Maybe someone should make a quiz like “what type of albino are you?”

Tess: That was actually a comment on my TED talk. There was someone who was like, what kind of albino is she?

Marissa: I had somebody ask me once if I was mixed with albino.

Tess: Oh my God.

Marissa: I just looked at him and I was like, no, I'm a purebred.

Tess: Oh no.

Marissa: Then I proceeded to tell him what albinism actually is. I didn’t want to spread that misconception, but I had to say that at first.

Tess: And, I mean, that's another misconception too, because, you know, it's not, it's not like you can be half albino, right?

Marissa: It’s not contagious, which is another one of the misconceptions that is super prevalent. It’s this idea that you can somehow catch it or that it's somehow like a curse.

Tess: Or that if you have a child with albinism, that means you did something wrong or you were cursed, or you cheated, or something like that. All of which of course is false.

Marissa: I, you know, I didn't think about that until researching for this episode how it, not only these misconceptions, not only impact children with albinism, but also their mother. Like this connection of how the outcome of a pregnancy is somehow a moral reflection on a mom.

Tess: Exactly. And then that socialization kind of extends, and then I think that can even incentivize a mom to want to distance from or renounce their child to kind of avoid that stigma.

Marissa: It really is a shame. I remember I was actually reading this morning in the albinism community Facebook group, Someone had made a post about how their mom basically throughout their entire life had called them a bunch of derogatory names and always considered them sort of useless because of their albinism. And I think that's another privilege that we have is growing up in such a supportive environment and having parents that are willing to advocate for us. I mean, your family started a nonprofit.

Tess: I absolutely agree with you. I, among all of the things I am grateful for, I have the most incredible parents. My mom has done so much work in this field. Before I was born, she said she knew absolutely nothing about albinism or eye conditions, and I think there's a lot of parents who either don't have the resources or just don't have the inclination to do that work. So I'm glad that there's people out there who can.

Marissa: And so we talked about how you found out about these issues and how it sort of sparked your interest, but what made you want to speak publicly about it? Like what inspired you to do a TED Talk?

Tess: So actually, this is a really weird story. So I would say like, the end of middle school, beginning of high school for me was when I started to feel like albinism does not have to be my whole identity and I can still talk on these issues. You know, like both of those things can be true and it felt really important to me to talk on these issues when I felt like I had the resources and available platforms to do so. In my sophomore year of high school, I came across a website for the Skin Cancer Foundation of South Africa. There was kind of a, like a page about albinism, and it was debunking myths because even, you know, also in areas of South Africa, there are still some of those myths and some of the language I remember feeling like was a little derogatory, well-intended, but a little dehumanizing. So I emailed them. And through this email exchange, they said, do you wanna come speak at our event, our conference in South Africa? And I had never done a speaking event before. I was like 15. I was like, okay. So the summer after my sophomore year of high school, I flew to South Africa with my dad, who was incredible and I'm so lucky that he was willing to do that with me. And I was the keynote speaker at the Skin Cancer Foundation of South Africa's annual conference. And I got to tell my story there and once I realized like I am capable of doing this and I am capable of reaching a larger platform by telling my story that way. When my high school was doing one of those TEDx programs, I was like, You know, I've done this before. I'm sure I can do it again. And I know those got, you know, posted on YouTube through the TED Channel and I figured, okay, that might reach an even wider audience. So that's how that happened.

Marissa: No, I, honestly I would never have done a TED Talk in high school. I did Mock Trial, I did debate, I did a lot of public speaking, but I never talked about myself. And if it takes a lot of bravery and confidence to do that, especially with something, I mean, it makes you feel vulnerable to talk about these issues.

Tess: Oh, absolutely. Oh, like I'm not gonna lie, I'm so glad I did it. I think anyone who has the opportunity and feels like they want to, you should absolutely go for it. I'm not gonna lie, it was really scary. But I think that was outweighed by their response because I realized how many people, you know, we had a lot of students I knew from Model UN and other organizations who were very interested in international human rights, who had never heard of this. A lot of teachers, a lot of educators who had known me since I was pretty young and knew I had albinism, had never known about any of this. And so I think that response of being like, I did not know about this, and now I do, and now I'm invested and wanna do something about it, kind of outweighed that anxiety.

Marissa: And so what was it like for you traveling to South Africa and did you get to experience firsthand the difference in how people treated you in the United States versus a foreign country?

Tess: I would say I am fortunate and that because I'm type two, my hair is a little, is a little darker, it almost is a little like orange reddish. So, I was not immediately recognized as having albinism. I think in a lot of spaces, I think I was kind of able to just appear as another white person. I think when I was giving the speech and when I was talking to people after and they were like, “oh, this is a person with albinism,” and I don't even think this is specific to it not being the United States as much as not being people I grew up with, or maybe people who grew up around a person with albinism. There was sort of some dehumanization.

Marissa: Yes. And I think there's this universal appearance that people expect you to have.

Tess: Exactly. I know. Wait, you?

Marissa: Yeah. When I was born, my mom thought I had albinism and they told her, oh no she can't because she has blue eyes and not red eyes.

Tess: Right. I got that all the time. My eyes are this hazel / green color.

Marissa: Did someone, did someone comment on your TED Talk and say “she's faking i”t or something. I feel like that would happen.

Tess: Yeah. Someone commented and said, this is just another white person. And that was a comment. I got a lot when I was younger, but, but don't have white hair and red eyes? So as a person with albinism who does not have white hair and red eyes, I'm gonna get those remarks.

Marissa: It's interesting how we can sort of blend in, but we also do have to take into account these safety risks when we do decide to travel. I know, for example, my business school is doing a global business experience for juniors where you can travel abroad during spring break. And it was in Ghana. I had to research how people with albinism are treated in Ghana and ultimately decided not to apply for it because of that. And this something extra that we have to consider that any of my peers just wouldn't even think about, I bet you most of them don't even know this exists.

Tess: I absolutely agree. I mean, I remember there was a nonprofit going to do something in Tanzania related to albinism and doing work with communities where people with albinism were living and I remember the feeling of like family members being like, “oh, maybe we could help, maybe we could get involved.” And being like, I don't know if I should go. I don't know if that's safe, if I would feel comfortable doing that.

Marissa: No, and you have to, you have to think about why that work is being done in that region in the first place and it stinks because you wanna get involved, but you need to consider your own safety. Speaking publicly and getting involved in the nonprofit space regarding human rights, how did that influence your personal relationship with albinism?

Tess: Of course, this isn't the point. I don't wanna entirely center myself, but I do think it really helped me with my relationship with albinism because I think before, I mean, I think a lot of us growing up, it's a source of shame, even though it shouldn't be just because of the way it gets socialized. And I remember feeling like, “okay, well then if I do talk about it,” if I'm willing to be like, “okay, I have albinism and I want to talk,” then that meant it was gonna be my whole identity that I would be kind of like boxing myself in or that I would like have something to prove. I remember growing up feeling like academically because, oh, Tess has a difference. Tess has a disability. It was like, it wasn't good enough to be good. It was like you had to be the best. You had to be better. You had to constantly prove yourself.

Marissa: I actually just made an episode about this called Gifted & Talented Blind Kids.

Tess: I'm gonna go listen to that cuz that sounds right up my alley.

Marissa: I feel like everyone I have on this show has mentioned something like that, feeling this need to to prove yourself.

Tess: Exactly. And I was really scared to make that something that I was really publicly stating and what that would mean, but I think it helped me develop a healthy relationship in that it's not something I'm ashamed of. It's not something I'm uncomfortable with. It doesn't have to be my whole identity, and I'm not someone who, I think a lot of people have different, you know, beliefs and stances on this, but I don't think I'm someone who's gonna be like this happened for a reason. I'm glad that this happened because that's just kind of not my personal mindset, but I do think I can. I was born in these circumstances and the kind of intersection of being a person with albinism and being a person with resources has put me in a really unique position to do something about this problem. And I think for that I can be a bit grateful.

Marissa: Because you're the, you're the perfect combination of that personal, that lived experience and also having some of the privilege and the resources to do something about it. And so I wanted to hear your perspective on this because I know you mentioned it in your TED Talk, and I know there's a bit of, I guess, controversy around it, the terms albino versus person with albinism. Now you mostly use people with albinism. Can you talk a little bit about why that is?

Tess: Yeah, honestly. I think it's a personal choice. I think I grew up in a situation where when I heard the term albino, it was usually in a context that was meant to hurt. In the albinism community, there's a lot of people who just have always felt comfortable with it or are even reclaiming it. I refer to myself just in casual conversation as albino. I think it is an annoying answer, but it kind of, I think, depends on the context. I think for me, the reason I tend to use person-first language is just because of a lot of the spaces I've been in where when albino is used, especially by a person who is not albino. It can be in a hurtful context, and so if anyone who doesn't have albinism is listening and is like, oh, what terms are, you know, preferable or kinder, I think that person with albinism is always a safe bet. But I absolutely do think it's a personal choice. I, like I said, I refer to myself as albino sometimes. I know plenty of other people who prefer the term albino. I think what it really comes down to is, are you saying this just as a, as a descriptive term or are you saying it with intent to dehumanize or to hurt?

Marissa: Yes. I know for me, I kind of oscillate between the two for the sake of variety, sometimes. Albino has been a term of reclamation for me. It's been a way to embrace it as part of my identity and not some medical condition, but as part of who I am. At the same time though, given the spaces that you're in, it makes a lot of sense to use the person-first language because you're working in environments and with cultures and people that don't see us as human. And you need to emphasize that sometimes very explicitly, like over and over and over again, like a broken record that, “Hey, I'm a person.”

Tess: Yeah, even, you know, in my own community where I grew up, even though it might seem like, well, of course Tess is a person, you know, there's still this sort of like, you know, mystical or probably unintentional, dehumanizing language where it's just like, there are spaces where I feel like I really need to make that clear, and I mean, I use albino when I'm talking to my friends or my family or whatever. But in educational spaces, I like using people with albinism just because I think that makes that really clear. But I also really like this movement I'm currently seeing of reclaiming the term albino because I think that really speaks to the fact that there's nothing, you know, shameful about it. There's nothing embarrassing or wrong about it.

Marissa: I don't want kids to grow up thinking it's a dirty word, that it's somehow exactly an insult, because I think that it gives more power for people to wield against us.

Tess: If it's not being used as an insult, there's nothing wrong with it.

Marissa; I remember when I was, when I was younger, I was at an arcade. There was a mom with two children shouting across the room “Oh, look, there's an albino.” Oh no, Karen. This is not a zoo.

Tess: No, and like the gawking, it's okay if its used merely as a descriptor and it's not used to dehumanize us or other us. I think it's perfectly acceptable.

Marissa: And so in regards to this personal relationship with albinism, so I know at least for me, after hearing about all of this stuff for the first time, it almost felt demoralizing. It was very depressing to hear about those realities, to see some of the pictures. How do you recommend we go about acknowledging these things happen, but not letting it damper our spirit?

Tess: I think that's a fantastic question because I definitely went through that feeling I think for a long time when I was younger and first learning about this, and I mean, that is a really great point about the images. I will say that if anyone is going to seek out this content, please take care of yourself and be aware of the images, because some of them can be very graphic. But what I think really helped me is realizing that we're not powerless, that there are concrete actions we can take that we have voices and that at least, especially on the level of my community and the places where I've spoken, there are a lot of people, maybe not everyone, but a lot of people who want to listen and who want to learn and who just didn't know about this before, but now that they do, they're going to care. And I think realizing that it's not, that it's not the end, that it's not a fight that we have to lose, that there are actually things we can do and that we can feel like we're a part of. And that having albinism is something to be not ashamed of. Not embarrassed of. There's absolutely nothing wrong or dirty or weird. I'm doing quotes right now. I think that's a really important step. I think any albino or person with albinism doing this work, even though it doesn't necessarily have to be about centering ourselves as individuals. I think the personal relationship with Albinism, it has to at least be somewhat a part of it because it kind of comes with the territory of just realizing that this is not something that automatically disempowers me. And in fact, oh, it sounds cheesy. I'm not, I'm not a fan of the “I'm glad I have my disability” mentality, but I think that it can be a really big source of empowerment.

Marissa: I agree. And it doesn't necessarily have to be under the “everything happens for a reason” umbrella. I know for me, I found that learning about more systemic or widespread problems regarding albinism and the treatment of people with disabilities as a whole. It was hard at first, but it was almost relieving in the sense that to know that I wasn't alone. And I think that, especially in the United States, there's this emphasis on individualism and persevering. And if you know, you experience discrimination or if you experience shortfalls, it's, you know, you just have to lace up the bootstraps and keep working harder. So it was relieving for me to know that I'm not the only one experiencing these things, and it's not all my fault,, but at the same time, knowing that I have a voice, I'm not powerless. There's something I can do and I'm not alone. Albinism isn't something that I have to learn to accept and advocate for by myself. There is a whole community.

Tess: Yes, there is. And there's a lot of, I feel like every time I meet someone else in this community, it's always just like the most intelligent, accomplished, person.

Marissa I was at a coffee shop a few months ago and someone else with albinism sat next to me and I was so excited. It took me 10 minutes to notice, but I looked over and I saw this head of white hair and I was like, wait, do they, are you, so we, we, we made eye contact and I was just like, are you? And she's like “yep.” And we had a whole 30 minute conversation. But it's really cool to have those connections, you know, albinism is something that's relatively rare, so especially if you've grown up in a more suburban or rural community, you're probably the only one with it. But I, I think going back to what we were talking about with social media and centering the voices of people with albinism, it's really powerful to know that there are other people in your shoes that have gone through the same thing. And that collectively, we have a strong voice.

Tess: Yes, I absolutely agree with that.

Marissa: And so now if people wanna get involved hearing about this, what are some nonprofits and NGOs you recommend people check out?

Tess: I mean, I'm always gonna plug Vision for tomorrow because my mom is amazing . I've done some work with Standing Voice and I think I really like that they take the community level approach because I think that is where education that's effective starts. I'm not gonna pretend that the UN as a body is, you know, a perfect organization, but I do think that work that UN experts all have done for advocacy is really important. And I absolutely think people should check that out. I also think in addition to NGOs and nonprofits, that in your own community, in your own town or suburb or school or you know, whatever kind of your community is, you might be surprised at how little your own friends and family and the people you grew up with know. And I think doing educational, you know, endeavors at that level can have a really big impact, especially if there's people who might, you know, have time and resources that they wanna invest for something, for a good cause. I think that is one of the most impactful things I've seen, like when I did my talk at my school, seeing, you know, my classmates, my teachers, who I grew up with, I think I was 17 at that point. They knew me for years and years, and there was so much of this that they just didn't know, and now that they knew they wanted to do something about it, there's just so many people that don't know, and that's why the education piece is so powerful.

Marissa: And it's almost like people see you as the only albino out there, right? You're the only blind person that they've ever met, so they almost kind of just look at you as some kind of oddity, like, “oh, you're one of a kind.”

Tess: Yeah. And then, yeah, there's this weird dynamic of like, I want to uplift these issues that impact my whole community, but I also, I never want to pretend that everyone's always gonna agree with me and I'm speaking for them. Because we all have individual experiences and I, that's definitely, I think, a really important consideration when you're doing that work. If you're the only one in your community representing that identity, emphasize that this is my experience. There's people with albinism all over the world who are gonna have different experiences and different views.

Marissa: I always seek to emphasize that, that like, yes, race, gender, sexual orientation, socioeconomic status, like all of these other identities influence people's experience with albinism and disability. I'm not the only one. There are so many unique varieties of experiences that people can have that we need to take into account.

Tess: Yes, I think that's so important. For example, I have a lot of privileges being, like I said, white and living in the United States and having the financial resources I need to do these things. And then, like for example, this is kind of a, a, a small thing compared to the systemic things we've been discussing, but like, I'm Jewish and I've gotten some really, really weird creepy comments about like, “oh, but you know, you have the look where you could have gotten away with it. You, you don't look Jewish because you have the coloring you do.” and I mean, you know, it's true. I don't, I don't look a ton like the rest of my family members. I don't, you know, have the same coloring that they do. My mom actually gets blonde highlights now, so that's less true, but yeah.

Marissa: And so if you have any advice for individuals that wanna get involved, that wanna do something, what would it be?

Tess: I would say look at what resources you have, whether that's time, whether that's money, whether that's, you know, strong bonds with people in your community. Whatever you have to give, I think start there. There's organizations that, you know, need funding, like some of the ones we've talked about. Obviously, money is not always the resource people have. But what we can do is we can talk to our community members. We can see if those organizations need any sort of volunteer work that relies on time. If you're good at, you know, writing or singing or speaking, or any creative endeavor where you can have a platform to share these ideas, I think that's always a great place to start. School newspapers or things like that.

Marissa: Yes, I've seen a lot of people do the sunscreen drives or for protective gear. That's like a relatively inexpensive way to donate and give people access to these resources.

Tess: Yes. Thank you for bringing that up, because that is a big thing a lot of the funding that these organizations provide, and this does go a little bit more into the health and the medical aspects. They are also important resources, like, you know, sunglasses, sunscreen, things that are very, very important for people with albinism, especially if you're living in a really sunny area, unprotected.

Marissa: Anyways, thank you so much for joining me today, Tess. I think everyone's gonna really appreciate hearing your perspective and kind of talk about albinism more globally, because I think given the nature of my podcast, it's very much centered on the experiences of an American college student, but most people with albinism are not in that position. So I think it's good to shed some light on issues people around the world are facing.

Tess: Yeah. Thank you so much for having me. I mean, I am also an American college student and I never wanna pretend that I can speak to issues that don't affect me the same way they might affect someone living in an area that's high risk. But I am really glad to be in a position where I can share this information. And encourage other people to see what they can do. So thank you so much for giving me this opportunity to do that.

Marissa: Well everyone, I thought that conversation was amazing. If you like this episode, be sure to subscribe to Legally Blonde & Blind on Spotify, Apple Podcast, YouTube, and anywhere else you can get your shows. Be sure to also check out my website,, as well as my social media platforms on Facebook, LinkedIn, and Instagram @legallyblondeblind for updates. Thank you all for listening, and I hope to see you soon.


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