Maureen Hayden is a graduate student studying Marine Biology at Texas A&M University. Maureen was born with a condition known as Retinopathy of Prematurity, which is the abnormal development of blood vessels in the eyes which can eventually lead to blindness.
In this episode, Maureen discusses the power of language, especially as it relates to the blind and low vision community, and the importance of role models and mentorship.
Transcript
Tanner Parker: What do you think and feel when you hear the word disability? For thousands of students at Texas A&M University, disability is a part of how they explore and engage with the Aggie experience. This is Agcess, a collection of first person stories on what disability means to Aggies just like you. We hope these conversations open your eyes and offer new perspective toward your understanding of disability.
Tanner Parker: Hey, y’all. My name is Tanner Parker. I’m a senior communications student here at Texas A&M and I am joined with my co-host Justin Romack.
Justin Romack: Howdy!
Tanner Parker: And you are listening to Agcess, stories about disability and access from the Texas A&M University community. Today, we are joined with Maureen Hayden.
Maureen Hayden: Yeah, thanks for having me on the show today. My name is Maureen Hayden. I am a fourth year graduate student in the marine biology program. I did my undergrad at the University of Rhode Island studying marine biology. And then before coming to Texas, I did my masters at a small school in Washington State called Walla Walla University, where I studied octopus behavior. And then I found my way to Texas A&M because my current advisor studies marine invertebrate zoology and behavior. So we make a lot of trips down to the coast.
Justin Romack: That’s really cool. Maureen, I’ve known you through a couple of different capacities. So I’ve known you from the student perspective, I’ve gotten to work with you on discussion panels, and then you have even started becoming a really awesome resource in STEM accessibility and how that relates to disabled students. So I’m really excited about this conversation, and I know that you have a lot of wisdom to share. I’m really curious as we get started, can you tell us a little bit about your disability?
Maureen Hayden: Yeah, of course. So I was born with a condition called retinopathy of prematurity. And so when I was born, as I understand it, my eyes weren’t fully developed and actually both my retinas were detached as an infant. So after quite the stay in the NICU, I had to have corrective surgery on my eyes as a very young child. So I have no light perception at all in my right eye. And then in my left eye, I can see. My retina is reattached, but it’s what is clinically called 2,400. My vision is not correctable. And if it was, I would wear a minus four prescription, but for me, glasses just don’t work. I can see color. And I would say honestly, if we were to be reading a newspaper next to each other, you could probably read it 12-point font comfortably away from your face, but I can pretty much only see the big E on the eye chart when you go to the eye doctor. So it would have to be 24-point font or something.
Justin Romack: How does that impact you in the STEM field? Your research, the work you’re doing, the instruction, and your studies as a student, how does your disability impact your experience? And what sorts of barriers do you feel like you encounter?
Maureen Hayden: That’s a great question and a lot to unpack. So first I’ll start with what I’m researching. So when I came to Texas, I went out to the beaches my first summer here. And one thing I kind of noticed I was looking for inspiration is that a lot of the beaches here, unfortunately, still have a problem with litter and pollution. And some of that is from beach goers, but unfortunately, a lot of it is also from industrial plants, rivers, and just backwash from the ocean currents here in the Gulf. So I thought, oh, maybe I can use my degree as an opportunity to address plastic pollution. And so that’s what I have decided to do. It was originally something I knew very little about beyond most people going into it, but having read the literature over the past couple of years and trying to develop how do you turn this into a scientific question.
Maureen Hayden: I’m really hoping that my research cannot only shed light on the problem, but hopefully be used by, for example, state park agencies and other entities that want to make change in our state to preserve our beaches for future generations. So I’m interested in how much microplastics are on the beach, which beach animals are eating plastics. And then if they are eating plastics, how is that impacting their health and behavior? I would say I was very fortunate to have parents who were very involved when I was young. They got me early interventions so I learned to grow up addressing barriers, and I was equipped with what I’ll call a toolkit and a skillset from a very young age, probably starting at five.
Maureen Hayden: I do feel like it has influenced how I’ve chosen to go about science. So for example, I struggle a lot with the fine motor skills. So pipetting or working with really small things takes me some time to get the fine motor skills and the muscle movement behind what’s happening. I also don’t drive. So I heavily rely on fellow Aggies and undergrads who want research to drive and to go to my field sites, but it means everyone gets to go have a beach day. So those are always really fun. To be honest with you, I don’t really think about barriers a lot. I think I just kind of see them and just subconsciously address them at this point. I can’t really think of specific ones other than the other biggest barrier I have is keeping up with reading. And writing takes me longer because I use voiceover and text-to-speech to read scientific papers.
Maureen Hayden: And it’s not like reading an article from the New York Times where you go beginning to end. Scientific papers have a very, we’ll say specific way that you read them. And sometimes the voiceover text-to-speech doesn’t quite know how to translate certain scientific terms or math. And then also when you’re reading an article, there’s all the in-text citations. And so listening to that auditorily can sometimes interrupt your audio processing of what’s going on when it reads a sentence and then there’s five in-text citations. And then it goes to the next thought.
Justin Romack: What impresses me most about you, Maureen, is that you have such a versatile set of tools and techniques to facilitate and just have the right access in the spaces that you needed. And I think that it’s really impressive. I know that it’s come with a lot of trial and error and figuring yourself out. It makes me want to know, how has disability impacted your identity? How do you see yourself knowing that disability is a part of who you are?
Maureen Hayden: That’s a great question. And I think the question is fluid. It definitely has been for me as I’ve grown up. When I was younger, I was really rebellious. Didn’t want to wear my sunglasses, didn’t want to use my cane. Didn’t want to use my large print. Didn’t want to be different from the other kids. As I got into high school, I realized I needed my tools and technology to keep up with the amount of classwork. Regardless if I looked different, it was more about safety and academic success at that point. I think though, you still had the… I was in the awkward space of being in the special education program, but being intellectually equal with a lot of my classmates, but I still kind of got that social isolation. So a big turning point for me was college because I realized nobody knows who I am.
Maureen Hayden: I’m going to school out of state. Nobody’s met me. There’s none of this blind girl, special ed girl stuff following me around. And I took it as an opportunity to redefine who I am. And I think college is a great thing for a lot of people. We really learn who we are away from home, especially. So then I thought, Hey, I’ll do person first language, introduce who I am. And then I started to use my tools and accessible technology as an introduction. So I use something called a monocular, which is like binoculars, but for one eye. And so I would always joke with my friends, yeah, you can look through it. It’s like you’re getting to be a pirate or something. And so I would use my technology as a bridge to getting to know people and to show them how I access the world.
Justin Romack: I think that’s really cool. And I mean, Tanner, I know you know firsthand, a lot of this stuff, a lot of what Maureen mentioned. Person first language and monocular, all the technology that she’s using. These are things you yourself were not really familiar with until you started working with our office. Right?
Tanner Parker: Definitely. Just for background Maureen, I started interning here at Disability Resources back in January. And so I definitely wasn’t… I don’t want to say I’m fully educated now, but I had no education about disability at all. And I’m definitely learning as the months go by and as these podcasts go by. So I heard you mention in the beginning about your parents and having that good community. And so you said out of high school, college really helped because you kind of not changed who you are, but you went into it more confidently is how it sounds. And you mentioned having your friends around and having them use your monocular and making jokes about it. How important do you think it is to have community?
Maureen Hayden: I think it’s extremely important. My mom and I have this saying that it takes a village to be successful. And I think that applies to everyone, not just persons with disabilities. But I think the more we can raise awareness and the more mentors and mentees we can have and just people in our corner, the better. And I think one thing to remember is that as someone with a disability, whether or not you recognize this, you’re always going to be educating because you might be the first person with a disability that someone’s ever interacted with.
Maureen Hayden: And I think in an age where technology is so relevant, there’s a lot of really cool apps out there. I turn on voiceover on my phone or something, and I find it’s a good way to bridge with people. And sometimes something that might help you, might benefit the entire class or the entire community. You’re a part of universal design is ideally meant to benefit everyone. And I wouldn’t be here without the supportive community I’ve had all the way from kindergarten through now. And I will say that never stop looking for mentors, never stop looking for making connections.
Justin Romack: As your understanding of disability has evolved and how it influences your identity, has it changed your course or changed your mindset on what you do with your life vocationally?
Maureen Hayden: So one thing I’ve started to be able to do in graduate school on top of research is I have started to do mentoring because that’s something I wish I would’ve had when I was an undergrad. So I do mentoring for college students who are also legally blind. And I think it’s so important to have role models who you identify with, who have been successful in any capacity of whatever your goals are. And it’s been really enlightening to mentor. Not only because I’ve enjoyed learning how I connect with others, but my mentees teach me things. And then being in a community with the other mentors, they have also provided a lot of support. And I think just going out and looking for those opportunities is so important. And I think that’s one thing I would definitely recommend to anyone is never pass up the opportunity to make connections.
Justin Romack: I think that’s a great lesson for anybody regardless of disability or not. I think it’s awesome that you share that. I think it’s a valuable piece of info for anybody listening to this podcast right now. To that point, disability is unknown to a lot of people. What the three of us know and what others know about disability is not commonly understood. And so what I’d want to know from you, Maureen, is if you could share something about disability with our campus community that you think would be impactful, what is it that you would want them to know?
Maureen Hayden: One thing? Gosh.
Justin Romack: It doesn’t have to be one. You can share.
Tanner Parker: She’s like, “Um, what?”
Justin Romack: You can share whatever is on your heart or on your mind, but yeah. What do you want them to know?
Maureen Hayden: First and foremost, and I’m seeing this more and more which makes me happy, is if you see someone who you think is in need of assistance or help, ask. And then not only just ask, but ask them how they would like to be helped because everyone has different needs and different barriers. And so I would just say, ask first rather than assume. And then remember that persons with disabilities, you may not always physically see a representation of what’s going on. And I think a lot of times when we think about disability, we have like the one societal picture of what that means. So if it’s a physical disability, a wheelchair. Hearing impaired, you have no hearing at all. Blindness, you have no light perception. But remember that just as our personalities or how we develop through life, these things are on a spectrum. And then everybody’s story is different. I was born legally blind. I have colleagues who lost their sight later in life due to motor vehicle accidents or disease or other things. So everyone’s journey is different.
Justin Romack: There is so much wisdom in that. And I think it’s really cool that you shared it because I think people need to hear that. One thing that you mentioned in that that really stood out is just your very intentional use of language. You mentioned first person language, you’ve used the phrase “persons with disabilities.” I’m kind of curious how your language has been informed on disability. There are so many different approaches to how we talk about diversity in our language. And so I wonder what had you arrive at using person first language above other or instead of other forms of describing disability?
Maureen Hayden: Yeah, I think this is something that I wasn’t originally aware of until I started working within organizations in the blindness community. So I’m going to name drop several: National Federation of the Blind, American Council of the Blind, and American Foundation of the Blind. I reached out to the student groups there and also through the mentoring program that I do for legally blind college students. These were things that we talked about as young people and I don’t think I ever really consciously thought about it until I started having these discussions within the community. And I personally like the person first language because for me, I want people to get to know me for who I am not because of my disability.
Maureen Hayden: And I think that’s just a personal preference, but that’s not saying that… Everyone, again, has a different preference with how they like to be referred. And it also changes based on what that disability is, but I really didn’t start thinking about it. And then another thing that I learned is within the blindness community there’s now a push to use the term low vision instead of visually impaired. Because if you say a student is visually impaired, the word impairment automatically could subconsciously give ideas about a person’s abilities. So now there’s a big push to say, “Oh, this student is low vision.”
Justin Romack: Language is so powerful. And even the change of a word, I think can mean… Just one single word can mean a lot for a people group, or how somebody sees themselves or the world see them. So I think it’s interesting that we get to talk about language and I think it’s cool that you’ve explored that.
Maureen Hayden: And I think the other thing too is I’m still learning. I might know a lot about the blindness and low vision community, but I don’t know nearly as much about learning disabilities or the hearing community. But these are things that I’m curious about because I want to continue to be inclusive.
Justin Romack: Do you feel like there is anything that we have not talked about that you really want the audience to know?
Maureen Hayden: I would just say take chances I mean within reason, but if you’re really passionate about something, I think you’ll find a way to do it. And I kind of made the joke that persons with disabilities are really good researchers because we’re already good problem solvers and you need to be a good problem solver to go into research. So I think whatever you want to do, if you’re really passionate about it and you find the right mentor, you’ll find a way to be successful.
Justin Romack: What an incredible closing quote. I think it’s so powerful. You wrapped up an entire interview in one quote and I think that was amazing. Maureen, thank you so much for sharing your time, sharing your wisdom, sharing your experience. I know we’re wishing you the very best of luck. I think you’re doing some really cool things. Thank you for being a guest on this show.
Maureen Hayden: Thank you for having me.