Episode 6: The Albinism Community

Esther Rosi-Kessel: Humans have an innate desire for social connection and for a sense of belonging and acceptance. Having any kind of difference or disability can really impact the ways in which people find this kind of connection. Let's talk about it. 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 excited to talk to Casey Greer, who is the program support specialist for NOAH, which is the national Organization for Albinism and Hypopigmentation. She's a member of the albinism community, as well as the HPS community, which she'll tell you about in a minute.

In this episode, we're talking all about the role having a community can play in the lives of people with albinism. So without further ado, let's welcome Casey.

Hi Casey. Welcome to the podcast! 

Casey Greer: Hi. Thanks for having me. 

Esther Rosi-Kessel: Can you just introduce yourself to the audience and tell them a little bit about what you do?

Casey Greer: Sure. My name is Casey Greer and I have albinism. I have a rare form of albinism called Hermansky Pudlak Syndrome, and I'm a program support specialist at NOAH, which is the National Organization for Albinism and Hypopigmentation. And I also work some at the HPS network as well. 

Esther Rosi-Kessel: Can you tell me a little bit about how what you do relates to community and how the kind of community you've seen through working for NOAH affects people in the albinism community?

Casey Greer: Sure. So for NOAH, I plan a lot of our events, both virtual events and in-person events. We have virtual Zoom calls for people to connect and also we have in-person conferences and different things like that. And I think it really, really positively impacts our community to have that support, to be able to ask questions, to be able to, you know, look up to people and, and be able to see people at different stages in their life and see what you might end up doing one day is really, really helpful.

And I think it really helps with confidence to see other people living their lives and knowing that you can do that too. 

Esther Rosi-Kessel: When did you begin interacting with the albinism community? 

Casey Greer: So I, long story short, I got diagnosed with albinism when I was a baby, but I didn't get diagnosed with Hermansky Pudlak syndrome until I was 18 because we just didn't know that I had that type of albinism.

And so really that's when I started engaging with the community. When I was about 18 years old, I went to my. Hermansky Pudlak syndrome conference. And then the same year I went to my first NOAH conference, and so that was when I started interacting. I had met a few, a very, very small handful of people with albinism in my life before that, but very few people. 

Esther Rosi-Kessel: And you've said that you were diagnosed with ocular albinism before Hermansky Pudlak syndrome, which a lot of the time, when biological females are diagnosed with ocular albinism, it's a misdiagnosis because it's very rare for girls to have ocular albinism. 

I'm told that when I was a baby, the doctors thought I could have ocular albinism and then they did genetic testing and they were like, nevermind. So I think that that's an interesting thing that not a lot of people really understand. 

Casey Greer: Yes. No, you're right. It, it is X-linked and so it's very rare and people would tell me that back when I had that diagnosis and I would get defensive and kind of angry and I would say, no, I do have this. This is what I was told I have. And so, and then it was really kind of a funny awakening when I got diagnosed with HPS and I was like, oh, those people were actually right. 

Esther Rosi-Kessel: And you have your own podcast with your friend Cassandra Mendez, and you've talked a little bit about community on that and specifically the HPS community.

Can you tell me a little bit about why that community is so unique? 

Casey Greer: Yes, so Hermansky Pudlak syndrome, like I said, is a rare form of albinism and it has all of the same symptoms of albinism, but also comes with a few other health struggles as well. It can affect people's stomach and lungs and other organs, and so it really is so important for us to have community to kind of, you know, I think knowledge is power. So when you're talking to medical professionals, really knowing what your condition entails and how to talk to them about it is so important. And having friends to ask, what kind of medication do you take for this symptom? And things like that. So with the added extra health issues I have, that community is really important to me too, for that reason. 

Esther Rosi-Kessel: What does community mean to you? 

Casey Greer: Oh, I think growing up with any kind of disability or difference can be, it can be a really isolating experience and it can feel like you're the only one.

And growing up, I never knew anybody like me. I knew one person with albinism growing up who was much older than me, and although I really looked to her as a mentor, I didn't really have any peers my age until I was much older. I met people with albinism when I was about 18, and it definitely opened up so many new doors for me.

I think just having those friends and just that camaraderie is so important and being able to have the support, but also it's made me such a better advocate for myself. I'm able to talk about my condition and understand it because I've heard other people talk about it, and so it really. It really helps me to be more confident and a better advocate, knowing other people who do that too.

Esther Rosi-Kessel: And so as part of what you do with NOAH , you lead community-based calls and you hosted the 40th anniversary celebration. What have you learned from leading that kind of community-based event? 

Casey Greer: Oh, it's, it's a lot of fun. I've met a lot of friends, you know, I think. I always feel like I know everything about albinism and then I'm learning something new every day.

So, you know, I, I feel like I never stop learning. It was really what I find fun about hosting all those events is like all the new people, they're constantly new people being diagnosed with albinism every day. Sometimes people are diagnosed as babies. Sometimes people don't have all the answers until they're older.

So seeing new people come on all the calls is really fun. But also seeing the same people come every time is so fun cuz now we have this community that, you know, I expect to see the same people every few weeks and it's something we all look forward to. And so I think, yeah, I've learned a lot from just talking to people on these calls and getting all their opinions on all kinds of stuff, and sometimes we don't even have to talk about albinism related things. We can just talk about hobbies or other things like that. 

Esther Rosi-Kessel: Right. Have your interactions with other people with albinism or Hermansky Pudlak syndrome impacted the way you view yourself?

Casey Greer: Definitely. I think my confidence wouldn't be where it is today if it weren't for the other people I know. Even when it comes to using mobility tools, like I use a white cane, I think I would've been too scared to use it had I not known other people doing it and gotten to see them. That really has impacted me more than I can even say. 

Esther Rosi-Kessel: And that's another thing with albinism is that we can see, but you know, we can't see very well. So how do you think albinism really like fits into both the blind community and the sighted world? Cause it's kind of a gray area. 

Casey Greer: It is, it's such a gray area. And when I was a little girl, I got frustrated one day and I said to my dad, I would almost rather be totally blind because I feel like people would understand it better.

And yeah, like you said, there are some things we do that kind of fit in with the blind community. Like I use a white cane for example, but then I, I can also see, so I can fit into the sighted community and it's hard cause you feel like you don't really fit in either community fully. I don't feel fully sighted, I don't feel fully blind. Where do I fit? and I feel like that makes it really hard for the general public to really understand what we go through, and it's really hard to explain. Most people don't get it. 

Esther Rosi-Kessel: Yeah. And there's also such a huge range with albinism, specifically because our vision could be legally blind. There's some people who might have other eye conditions that could make them almost totally blind. Or there are some people who have good enough vision to drive or not really use any assistive technology or mobility aids. So even within the community, there's such a range of vision and that can make it a little bit harder to classify in terms of whether you're blind or sigted or something else.

What do you think people can do to make people with albinism feel more included? Just in, you know, regular community, things that are not related to albinism or visual impairment or anything along those lines? 

Casey Greer: Yeah, that's a great question and I think it's, it's kind of hard to answer because. On the one hand, I want people to treat us normally.

And on the other hand, I do want people to acknowledge our vision impairment, not ignore it completely either. So I think what people can do is treat us normally, but if we ask for help or if we need help, to try to be aware of making things accessible for us, whether that means, you know, providing large print or just asking us what we need.

Honestly, just sometimes just asking us is the very best way to know what we need. You know, how can I make this more accessible to you? Do you need any help? That's great. But also just kind of stepping back and letting us be, because we adapt pretty easily. And so a lot of the times we can do stuff for ourselves, so we don't wanna feel our disability is our whole personality and that that's all there is to us. But I do like it when people at least acknowledge it too, because when it's completely ignored, it's hard to get what I need when it comes to accommodation. 

Esther Rosi-Kessel: Yeah, absolutely. And I also think that for a lot of us, it is a part of our identity.

And you know, people are different stages of being comfortable with talking about that, but for a lot of us, we do want people to like know about it and see that as part of us, and not just ignore it and be like, oh, you're completely normal. Normal's not the right word, but. 

Casey Greer: Right. No, I totally know what you mean though. That's exactly right. 

Esther Rosi-Kessel: How do you think being a part of the HPS community specifically has impacted your interactions with other people with albinism or disabilities? 

Casey Greer: That's a good question. It's really opened my eyes a lot to health and being aware of your health, taking care of that as much as you can.

A lot of it is out of our control, but, you know, people, just like albinism in general, people with HPS , it's a wide variety. You know, some people are way more sick than others. And, you know, I am actually one of the more healthy people with HPS and that can sometimes lead to some guilt or some feelings that, oh, you know, I don't have a right to talk about my issues when there are other people struggling so much more.

But really the community has been so accepting, and open and I, I do feel like I'm able to do that and talk about that. And I still do feel fully accepted within just the broader albinism community too. I, you know, have more pigment. So I don't really present like I have albinism as much, and so I was worried about that. I was worried that I wouldn't fit in with the albinism community because of that. But they've all been very accepting and I've met a lot of people who, who look more like me. So that's been a fun experience-- including you. 

Esther Rosi-Kessel: That was also interesting for me because up until a couple years ago, I didn't really know many other people with albinism.

So, I hadn't really gotten to meet other people who also had like similar pigmentation to me other than people who just happen to have blonde hair, like if they're Scandinavian or something. So that was a really interesting experience. But also because I got to see like such a huge range, cause I had only ever really known how my vision worked.

And then I found out that there were people who had quite different experiences than me, but we all had a lot in common. 

Casey Greer: Did you feel when you started to get involved with the albinism community, were you afraid that you wouldn't be fully accepted because you don't present as looking like you have "full" albinism?

Esther Rosi-Kessel: I think I didn't really think about it that much because I kind of was like, okay, I have albinism. There's this group, let's go see what it's like. And then everyone was pretty chill about it. 

Casey Greer: Yeah, I kind of felt a little afraid, but I, I agree with you. Everyone is really chill about it. I've never felt like they didn't accept me.

Esther Rosi-Kessel: Last question for you is, what is one thing you wish more people knew about life with albinism? 

Casey Greer: Ooh, I, I think a lot of people see albinism depicted in the movies and... a few things. First of all, I think a lot of people don't even realize that albinism has a low vision component to it, which is something I've had to explain to people.

You know, everybody with albinism has some form of low vision. It, it varies, but our eyes are always affected by not having enough pigment in them. And so I do think that's something that's never portrayed, portrayed in movies. And then also, of course, the stereotypes of the evil albino character or like the red eyes. Things like that. 

There are so many misconceptions and I just want people to know that, like, we can go outside. You know, we have to take precautions, but we can, it's not that we're stuck inside the house and we can't ever see the sun. You know, we go outside, we live normal lives. Our eyes might look a little different. That's because they are, that's because we have vision impairment, but. Those are the things I want people to know. Um, I think there are just so many misconceptions. I could go on and on about all the different misconceptions, but those are a few, you know, even that we have, you know, magical powers and things like that.

I mean, right. Just so many different. Things that are wrong. 

Esther Rosi-Kessel: Yeah, no, definitely. And in my research for this project, I had to watch a lot of, not the best representations of albinism. Some of them, like, I, I tried watching the Da Vinci code and I couldn't get through it. I, I didn't think it was entertaining even without the albinism part. I just didn't, I didn't like it. 

And, you know, the, what I've found is that you have to have representation from the people that you're trying to represent. Because when I, when I do find good representation, it's always either written by someone with albinism or they're playing the character and they have some say in who that character is.

Casey Greer: Yes, definitely. 

Esther Rosi-Kessel: So there are definitely a lot of misconceptions, but I'm hoping with the more recent understanding that people actually need good representation across any kind of minority group. Anything like that. I'm hoping maybe we'll see some better representation in the future. There is a new character on Blues Clues who is played by a person with albinism. And her character has albinism and they even like have the nystagmus in the animated character. 

Casey Greer: Yes. And not only is she played by a person with albinism, uh, there was also another person with albinism who was like a writing consultant on that character too . And I think, like you said earlier, it's important not only for the people with albinism to be in front of the camera, but to also be in the writer's room to actually write it correctly. So yeah, hopefully we're taking steps for all minority groups in that way. 

Esther Rosi-Kessel: Mm-hmm. So thank you so much for coming to talk with me. I also recommend that everyone go check out Casey's podcast, rare With Flair. It's a really great podcast about just life with albinism, HPS , but also just life.

That's the " flair" part.

Casey Greer: Yes, definitely. And thank you for having me. 

Esther Rosi-Kessel: Yeah. Thank you so much for coming on. I hope you enjoyed this episode of Albinism More Than Meets the Eye. Again, that was Casey. For more information about the things we talked about in this episode or to read a transcript, please check out meetstheeyepodcast.com

if you like the episode, leave me a comment or a review. I'd love to hear from you. Thank you for listening!