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Welcome to Change Makers, a podcast from APH.
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We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision.
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Here's your host.
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Hello and welcome to Change Makers.
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I'm APH's public relations manager, Sara Brown, and on today's episode, we're continuing our spotlight series featuring the incredible cast of The Dot Experience.
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The Dot Experience is a new, inclusive museum opening this October.
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And one unique aspect of The Dot Experience is that it has cast members.
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And these are more than 20 individuals who are blind or low-fision that are sharing their authentic stories.
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And this cast is made up of advocates, artists, professionals, athletes, students, parents, and workers, highlighting the many roles individuals who are blind hold in society and showcasing vibrant, diverse lives.
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And today, as we continue that series, we're spotlighting George Stern.
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He's a research assistant at the University of Mississippi and was just accepted as a doctoral candidate at Boston College.
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Hello, George, and welcome to Change Makers.
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Thank you.
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Would you like to just introduce yourself and let our listeners know a bit about you?
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Sure.
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So my name is George Stern.
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Then I went to Texas, supposedly, just to get my bachelor's degree, but I ended up living there for a long time.
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Got my bachelor's in French from Texas Tech University and got my master's in curriculum and instruction from Texas Tech.
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And at the moment, I have moved to another state in the South, Mississippi, has its own show.
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And I'm a researcher with the STEM Center, actually, the Center for STEM learning at the University of Mississippi.
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And I also recently got accepted to Boston College in a doctoral education, a doctoral program in education.
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So a lot going on, a lot of things in transition and enjoying it.
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Do you mind sharing a bit about your childhood, where you grew up, and some of your favorite activities?
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Sure.
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So as I said, I was born in Jamaica.
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I didn't live there long.
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I I left there when I was two and a half, but I have quite a vivid episodic recollection of my life there in terms of we lived kind of a very typical extended family, intergenerational family type of existence.
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And so I had my mom, my dad, and then I had uncles and aunts in the vicinity and cousins.
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We lived in my great-grandmother's house.
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She and most of my mother's family were already up in the States, but uh we were staying at their house, and I just remember like little vivid details like the fact that we had a coconut tree in the front yard.
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We had sugarcane.
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In fact, I remember my first conscious memory of pain, the feeling of being injured, came from running my hand the wrong way down a sugarcane stalk.
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And if you don't know anything about sugarcane stalks, they have these little bulbs in the in the on their surface that when you run your hand the wrong way down them, those bulbs will stick in your skin.
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And so I have this memory of that being my first ever injury and going to my dad and taking the splinter out with a flashlight to see the splinter.
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And so just things like that.
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My first taste of a coconut, the scent of fried fish.
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Uh, I remember my pets from Jamaica.
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So that was my Jamaican childhood, brief, but very, shall we say, very rich, very memorable.
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And then when I went blind, well, I started going blind in Jamaica and I had a misdiagnosis for pink eye.
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When it wasn't pink eye, ended up being cancer.
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So by the time they figured all that out and realized that Jamaica didn't have the facilities to treat the cancer that I had, uh, it was decided that I needed to come to the states.
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So I moved to Florida, South Florida specifically.
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Um, got there too late to save any vision, so my eyes were removed and I became fully blind.
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And yeah, I spent most of my or all of my young adult uh childhood and young adulthood in South Florida, just going to school and enjoying the fact that South Florida is basically kind of the northern part of the Caribbean.
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And so I enjoyed climbing trees, I enjoyed picking fruit, mangoes, papayas, and enjoyed gardening a lot, uh, enjoyed animals, particularly dogs.
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Um, enjoyed school.
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Education, particularly once I learned to read and read braille, was just it, it was, it opened a whole nother world for me.
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Um, it's doubtless a big part of why education has become such a central part of who I am as an adult as well.
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How old were you when you had surgery to remove your eyes?
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I would
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say about two and a half years old.
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I came to the US in 1993.
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And do you have any memories of adapting to your new normal?
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Um, from a visual perspective, no.
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Like I have no clear memory of like one day being able to see and the next day not.
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I remember events from that time and people, but I just the transition there's no recollection for me of a transition from seeing to not see.
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Wow.
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This is kind of interesting.
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After the surgery with your eyes, did you start to receive services and assistance for Braille and OM?
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So yes and no.
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Yes, in terms of I was very fortunate.
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Well, a couple of things.
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One, you know, for my parents, of course, this was a very difficult thing.
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Uh culturally, disability is a difficult thing, you know, because my mom and my dad would always tell me that in Jamaica and other cultures around the world, disability is is seen as a, if not a death sentence, then at least a sentence for isolation.
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Right.
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And so me being their firstborn kid and going blind was just it was a challenge for them.
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But my dad had grown up as an orphan.
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He had one living parent who died later, but wasn't really in the picture.
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And so he he my dad grew up in at the National Children's Home of Jamaica, which is an orphanage, and that experience left him with a lot of difficult emotions, um, and a conviction that none of his children would ever be raised or be given to a state institution.
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And so even though I had gone blind, there was no sense of, there was a refusal to let me be taken away or put in a residential institution for blind people.
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Um, so there was that conviction, and so my parents really kind of muddled through figuring things out before they were connected to any type of services.
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So I like my dad was he also taught himself to read at the age of 14, and he was just so determined that his kids would learn how to read, blind or not.
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And so I remember him reading to me before we knew anything about the National Library Service or APH.
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He would read things to me, um, him and my mom, and then he would read things and put them on tape recording.
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This was in the days of cassette players, uh, so that I could have independent access to the books that he read.
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And so that was my parents' effort.
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And then we were very fortunate early on to meet a truly influential and inspiring itinerant teacher for the visually impaired in uh Sandy Edmonds.
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She worked with the Broward County School District, and she was the one who really, along with some other team members, came and told my parents, yes, you know, your child can go to school independently, he will be able to leave you, he will because uh I guess kind of looping back to your previous question about my experience of losing vision.
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If there was anything probably that showed up, it was a fear.
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So I think at that time I must have been very afraid um because of the change that had happened in my world recently.
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And so that fear made me hesitant to leave my parents, who were basically the only safe thing in the world.
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And so it was Sandy Edmonds and trying to remember some other names, Mike, Michael.
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Quite a few, a whole team of people really, just kind of fortified and buoyed up by, you know, the recently passed or revised IDEA and ADA and all of that stuff, who just flushed with confidence and competence and said, Yes, your son can do this, there are resources for him to do this, there are supports, there are people who will support him, um, there's people who will support you as parents.
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And so, yeah, they they got me to school.
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It was a fight the first time, it was a fight the second time, but soon enough I was enrolled in Head Start at three years old and then four years old in pre-K.
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And I've genuinely enjoyed and loved school ever since.
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Talk about your life today and what does it look like?
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Well, it looks like you know, early well, not I was gonna say early morning...
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But that's besides being highly educated and extremely intelligent.
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Yeah, what's your life look like today?
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Yeah, I mean, you know, I'm and this kind of feeds into the uh when I was answering your questions about services earlier, I said yes and no.
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So I gave you a lot of the yes, uh, the no part is kind of what I have had to figure out because living in South Florida, I I had two three environments.
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I had home, I had school, and I had church.
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And I didn't necessarily at the time, it's probably because I started losing my hearing around four years old as well, and so that became a secondary disability.
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And so I didn't really have services to address either specifically the hearing loss and its impact.
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You know, I got hearing aids and so on, but
there was no, at least until I was about 17, and I got connected with the Deaf Blind, the Florida Deaf Blind Project, and people like Emily Taylor Snell, there was no systematic addressing of the fact that you're not just blind, you're deafblind.
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And you know, a lot of the larger orientation and mobility stuff didn't kick in and kick in until I was older as well.
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And by that time, you know, it was like I'm losing my hearing.
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Uh I have my my fixed environments of school, church, and home, and the rest of the world is still kind of scary and foreign.
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And so it really took moving out to Texas as an adult and figuring some of that stuff out on my own and then reconnecting with some of these services as an adult to you know learn, oh, and I'm in a new city, in a city that was more walkable, that had better public transit than Lauderdale, Lauderdale, Florida.
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Uh it took until then for me to really start engaging with those services.
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And through that engagement, developing, I'm I'm getting to your the last question now, engaging with those services enough to develop, you know, the things I have developed, like the fact that I I love doing, I'm a fairly active person.
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And so my activity sometimes focused on like martial arts and climbing, as I said as a kid.
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Um, but now I'm I'm more of a runway and I do yoga and different different movement practices.
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I love to walk, so I'm very happy that here in Oxford, Mississippi, I get to walk a lot.
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Like this campus is very, it encourages a lot of walking.
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And so all of that feeds into kind of my passion around education, but education for an education that involves the whole person.
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You know, so not education as just a bunch of bodies sitting at desks getting lectured at, education as people moving and learning and experiencing and learning through experience.
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Um and really what's tied to that, of course, is my my lived experience as a disabled person, because so much of the science related to education has an assumption of quote unquote normal sensory capacity or quote unquote normal neurotypicality.
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Right?
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Like there's lots of the people learn, you know, whether they can see, whether they can't, whether they can hear, whether they can't.
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So it's up to us as educators to then uh you know make sure the science acknowledges uh humanity in its full range instead of just this weirdly narrow perception of what humanity is.
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Share some of the accomplishments and milestones that you're exceptionally proud of.
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I'm sure you have plenty.
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Oh, you know, it's funny.
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I uh was thinking about this recently, could because I I graduated with a master's degree, and that was great.
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Um and at about the same time I was graduating with my master's degree, I I I ran a particular half marathon in Texas that I was I had been promising myself that I would run.
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And it's like, which one are you more proud of?
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Are you more proud of the master's degree or are you more proud of running the half marathon?
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And I will say the half marathon was probably more enjoyable than the master's degree.
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And so, you know, but I enjoyed both.
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I definitely enjoyed both.
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Um, my parents were able to come up, and my sisters and nephew and nieces were able to come up for my uh graduation and master's ceremony, and that was great because you know, I'm a first-generation college student, and so that was very great for my parents to experience and for my sisters and nephews and nieces to see that.
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And you know, I am also very happy that I have been accepted into a doctoral program that I was really interested in in in at Boston College and not looking forward to the snow and the winter in the northeast, but you know, life is a series of trade-offs.
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You know, you will adapt.
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I'm sure there's there's there's, you know, what is it?
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Is it clam chowder there?
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There you go.
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Yeah.
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Now, the whole point of this podcast is to spotlight cast members for The Dot Experience.
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And you are a cast member.
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Do you remember how you first heard about this opportunity?
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Um, Erin reached out to me.
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I hadn't heard anything about it, and then Erin sent me an email.
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Erin, I believe, is is she's the coordinator of the project, project manager, whatever the title is.
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Yeah.
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And so, yeah, she reached out to me, and I was just intrigued because of how important Braille has been in my life.
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Like it has one of the other things I do in my free time.
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I'm a an amateur theater person, and so I act, I I write plays, I do a lot in the playwriting and and performance space.
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And Braille is an essential part of that, right?
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Because being able to read lines and do table reads and all of the important things that we do
in theater space requires that access.
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And, you know, my education would not be anywhere near where it is if I hadn't been introduced to Braille early on and just had that constantly available.
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You know, the access to books and as as electronic books became more available and bookshare became uh is a thing.
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Like it's I just can't, I could not imagine what my life would be like without Braille.
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And so when uh Aaron told me about The Dot Experience and kind of this focus, I I was immediately intrigued.
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What does being a cast member in The Dot Experience mean to you?
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And how does it feel to have your story shared with others?
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Um I'm always happy when that happens.
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I know this is probably this is one of your later questions.
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Uh I see The Dot Experience really as a chance to do something that I strive to do whenever I'm just in the way that I live my life, right, is I try to shift people's narratives and shift people's expectations.
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You know, one of the things, one of the other accomplishments I'm really proud of is I worked for a while as a pub uh uh contributor to the food magazine Serious Eats.
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And one of my my first articles for them was basically making the point like, hey, there are disabled, there are blind people out here who love to cook, who enjoy the content you have, but a lot of it is inaccessible if you put pictures up there without image description.
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And I remember the response from the the editors and the readers, just amazed and impressed, and like we didn't realize.
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And now when I go on to so many food websites, not all of them, but so many more, and I see clear, precise, informative image descriptions on their photos.
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I'm like, okay, I I contributed to that.
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I helped that be a thing, I helped people realize that that needed to be a thing.
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And so that's that's where I see my role in the in the dot experience is maybe something in the way I've lived my life can shift someone else's narrative around blindness, around disability, uh, can can shift their expectations.
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What is something you wish more people understood about blindness or low vision?
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It doesn't change the desire to contribute.
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I think that's that's something that gets missed a lot in you know our our services model and our uh Just even uh just a lot of our narratives around blindness, even around older people who are going blind.
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You know, there's a lot of focus on, okay, we can get them services, or we need to do certain things to make sure they're safe, etc., etc.
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But less acknowledgement that blind or not, people feel better as human beings when we can contribute to our communities in meaningful ways, and when those contributions can be acknowledged.
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I spent a lot of my undergraduate struggling with finding a community that I felt I could contribute to, and struggling with isolation because of that.
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Like just meeting people in class for class time, that that wasn't enough.
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It became I found the communities when I've when I've joined the theater, when I joined the running community, and it wasn't a matter of, oh, you know, we're helping the blind man do XYZ.
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It was we are with a friend, we are with someone whose existence in this community is valuable in and of itself, not just because we are helping him, but it's a mutual exchange of benefit.
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You know, and I think it would be a better place if people realize that blindness doesn't take away that desire to contribute, and it doesn't take away the ability to contribute.
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It just means you have to get more creative about how you do it.
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And before I let you go, is there anything else you would like to share?
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It could be about you, your life, being a cast member, anything else you want to leave our listeners with.
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I just want the listeners to think on what I just said, honestly, because that that's truly the the highest barrier.
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You know, when when blind people try to apply to a job or try to connect with some some aspect or some uh activity in a community, we always run that risk of running into someone's expectations, like why are you here?
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Why do you need to be here?
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Uh oh, are you here to be helped?
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And if we can overcome those, and we can reach a space where people understand that, yeah, we're just trying to find a way to contribute and participate.
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It's like we're not looking for a participation trophy.
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For us, as I wrote in one of my writings, participation is the trophy, and participating is the prize.
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And so the more people can think about that and engage with that idea, I think the better and more open life life will be.
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All right, George, thank you so much.
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I have loved listening to you talk, and I'm so grateful that you agreed to come on Change Makers and talk to me.
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Thank you for the invitation.
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And thank you so much for listening to this episode of Change Makers.
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If you have a podcast topic or suggestion, please send it my way by sending me an email at changemakers at aph.org.
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And as always, be sure to look for ways you can be a change maker this week.