Bold Blind Beauty On A.I.R. Show Notes
Episode title and number: Featuring Chef Alicia Connor & Michael Nye #2
Brief summary of the show:
"I do think this project is about, really in some ways, not about blindness at all, but it’s about our shared humanity and our shared fragility. And it’s about incredible mystery of perception, and about adaptation. And I think discrimination grows from the sighted community not understanding or not willing to understand that anyone can adapt to new situations. They just see immediately what happens if they imagine themselves blind, but they don’t realize you adapt by learning." ~Michael Nye
The Month of February, known for love, is also recognized as Heart Health Month and Low Vision & RP Awareness Month.
Bullet points of key topics & timestamps:
List of resources mentioned in the episode suggested reading & social media handles:
Finding Bold Blind Beauty On A.I.R.
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Music Credit: “New Inspiration” by BasspartoutX https://audiojungle.net/item/new-inspiration/7204018
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Stephanae McCoy 0:10
Welcome back to another edition of Bold Blind Beauty On A.I.R. Bold Blind Beauty On A.I.R. is clearing the air for more A.I.R. (Accessibility, Inclusion, and Representation). I'm Stephanae McCoy.
Nasreen Bhutta 0:25
I'm Nasreen Bhutta.
Sylvia Stinson-Perez 0:27
I'm Sylvia Stinson-Perez.
And we are your co-hosts. In addition to being recognized as a month of love, February is also Heart Health Month and Low Vision and Retinitis Pigmentosa Awareness Month. Our lineup for this month includes Alicia Connor, who's a registered dietician, nutritionist, and chef. We're also going to have a conversation about low vision, what it is, along with some statistics, and then we'll wrap up today's episode with Michael Nye, author of the book My Heart Is Not Blind over to you Nasreen.
Thanks, Steph. Hi everyone. Today we're gonna look at Healthy Heart Month. When we’re thinking about Healthy Heart Month we're also thinking about eating healthy. Lately, while in lockdown, people have engaged in a very unhealthy lifestyle, such as eating poorly, drinking more alcohol, and limiting physical activity. And this all can contribute to heart disease over time. To have a healthy heart, it's good to include things such as sleeping well, eating well, exercising, and having a positive mindset. This all contributes to a healthy lifestyle, and they say we are what we eat. So turning it over to our first guest welcoming Miss Alicia Conner, who is a nutritionist and dietitian to give us some more insights on healthy eating. But first, I have to ask you, Alicia, would you mind sharing your sight loss journey with us?
Alicia Connor 1:50
Absolutely. Hello, everybody. Thanks for having me. My sight loss story began when I was 17. And I was driving. And I realized that I couldn't read the highway signs nearly as well as I used to be able to just recently when I just started learning how to drive.
So I went to get a pair of glasses. I remember the face of the gentleman when he gave me a pair of glasses, there's definitely a vibe and a sense of uncertainty of whether or not they actually did anything. But I was like, Yeah, I think they do something because it seems like that's what they were supposed to do. But I got this vibe that he didn't really know why because he didn't communicate.
So anyway, a couple of years later, I went to get new glasses, because that's the right thing to do when it seems like they need you know, get a better, stronger prescription, whatever. The woman optometrists that I saw, she was persistent. And she was concerned that she couldn't figure out how to correct me. So she called at the time I was living in Providence, Rhode Island. She called the Rhode Island Eye institute that day, and she asked if they could come if they could take me that day because she had dilated me.
So I was like ready to go right? Once you're dilated, that's a great opportunity to get more tests done. And so they could see me that day, she sent me off on my way, walking in the middle of winter with snow everywhere, and like the temporary pair of sunglasses to get tested. And that day, I was diagnosed with hyperplasia of the optic nerve. So that means I have pink optic nerves.
And it turns out years later, I learned it's a hereditary gift from my family. So my mother and I both became legally blind around the same time, I was 27 years old, and she was in her 50s. And my grandfather had this eye condition as well.
So basically, from the time I could, I could read small print and everything when I was 17. And then things just became harder to read when I was around 22, 23. And then slow progression. So I was told when I was diagnosed that I could become legally blind, and I would have a slow progression of sight loss over time.
And then, when I was 21, when I was 20, I drove cross country from Boston to San Francisco, where I live now. And that was my last drive. I was happy to give up my license because the whole sense of security and safety behind driving (because driving is like super big deal). I knew that it was better for me to give up my license at that very moment than to live on thinking that I could drive and that is that would be more like living the struggle versus just like being confident in my ability to like live a life without driving.
That's a really incredible story. Thank you for sharing that with this Alicia.
It's such a treat to be here and share some wisdom in terms of how to stay focused on your health journey. Like you're saying Nasreen, you know, it's very easy to be distracted during the pandemic and focus on things that are not super healthy. And so I like to challenge you to think about how you can take this opportunity that is February 2021, to reset your mindset for health and focus on just a few things, one or two things each day to kind of keep that momentum of staying on the health journey a little bit more often. And a few ideas come to mind are something simple like eating the rainbow more often or even the challenge within your family you can have a challenge where you eat a rainbow a day within fruits and vegetables. What do you think?
I think that's fantastic, Alicia, a lot of color. So when you're talking about rainbow, is that what you're alluding to color?
Yes, exactly different colors. And so what the rainbow means or eating the rainbow could be eating anywhere between you know the full spectrum of the rainbow would include especially for those who don't see color, white vegetables, and fruit. So a white vegetable could be daikon radish. A yellow vegetable could be yellow bell pepper which is sweet. And then orange could be carrots or butternut squash, peaches. Red could be strawberries, of course, or rainbow swiss chard has red stems in you know different red segments of vegetables. Rhubarb is also red, and then purple and blue. So purple is purple potatoes, purple cauliflower, also known as graffiti cauliflower.
There's also purple cabbage one of my favorites.
Totally or red cabbage, also known as red cabbage, even though it's like for folks that see color, very purple, and not red. So yeah, I need a little bit more color and your salads and your veggies. And the spectrum of the rainbow continues with brown is mushrooms or potatoes. And then black is there's black Spanish radish, which is very dark black on the outside and then very white on the inside. And then there's black Beluga lentils which are very small and they take less time to cook than some lentils. And so thinking about this could be a fantastic game for anybody whether or not you're just hanging out on your own or if you have a family to focus on. Eating healthy more often is using the colors as a guide.
I love that Alicia making food fun by adding color and getting the whole family involved. I think what's happening today it's a great thing to be more engaging in around the dinner table and also knowing at the end of the day you're putting in healthy stuff as well too.
Absolutely. So I would like to ask all of you what a healthy snack is that you like to go to as a default and maybe incorporating this color idea and the rainbow if you have a default snack that includes colors. What do you think?
That's a great question Alicia, Steph, what do you think?
My favorite healthy snack is fruit. But I also like and I like just about any kind of fruit so apples, I love the little halos, bananas, but I also like popcorn.
For me. I also love color in anything I eat. I love hummus chips, and a good truly salad with a lot of two sikhi sauce. So I love the Mediterranean side of snacking.
Excellent. Those sound like healthy choices. I was going to recommend, you know, Steph do you ever add some kind of protein to your fruit?
Can you give me an example?
Like a nut butter or Greek yogurt or cottage cheese or a hard-boiled egg?
So cottage cheese and yogurt I'm not crazy about what was the other one like a nut butter like a peanut butter?
Like a nut butter or some unsalted nuts.
Oh, yeah, I could do that.
Sylvia. Yeah, share your healthy snacks with us.
Like both of you, I love fruit, especially if I can throw it into a smoothie. And I don't need to add all that extra sugar or anything. I also love bananas and apples with peanut butter. But my go-to addiction is raisins. Are those healthy Alicia?
Well, if you get raisins or dried fruit without any added sugar, that would be the best choice but I would have your raisins with some kind of protein. Do you add any kind of protein to your raisins? There's a very famous snack that raisins are the mainstay of the snack. Does anybody know what I'm talking about?
Is it chocolate?
Ants on a log.
Nasreen & Sylvia 9:21
Those of you who are listening who don't know what I'm talking about, ants on the log is the famous snack that includes celery, some kind of nut butter, peanut butter, almond butter, whatever, and then you put some raisins on top to make it look like ants. It doesn't really look like ants but it's a very funny way to give a funny name to a healthy snack.
There's also I have to share this because I have this opportunity. I have a patient, a patient who's in his 50s. And he's like a contractor guy and his buddy that he works with they share the office together. And his buddy brought in red ants on a log which is celery with peanut butter and then pomegranate seeds on top isn’t that cool?
That’s nice. That's colorful, actually very colorful. How about You, Alicia, what do you recommend when you're snacking?
I was just recommending having protein with your fruit or carbohydrate together will help you stay full more like a little bit longer. So if you have like an apple with peanut butter, or almond butter or whatever your nut butter, your favorite nut butter is, or cottage cheese with fruit. And you could even put a little sprinkling of like a very low sugar granola on top for crunch if you're having cottage cheese or if you're having Greek yogurt.
Sometimes I like having like a small portion of something like a hearty salad like a Tabouleh kind of salad like black beans with quinoa. And then some like whatever vegetables whether or not it's in the summer, and you have cucumbers and tomatoes available to make like roasted red bell pepper and Swiss chard and kale mixed up. And so I'll have like a small cup of something like that. So instead of like getting a snack food, I might have a small portion of something, some soup, a cup of soup or something else. I think sometimes we get in trouble when we focus a little bit too much on those snack foods. You know?
That's true, I saw myself double-dipping into the wrong bag some time. But I love those ideas. Thank you so much, Alicia, for that. Thank you so much for hopping on our podcast, today with us this afternoon. Appreciate that. Can you tell our listeners how to find you?
Absolutely, you could go to YouTube and check out my cooking video series that has meal planning tips and strategies. It's called Quick and Delish by Alicia Connor. I'm also on Facebook, Quick and Delish by Alicia Connor. If you're an Instagrammer, check out Quick underscore Delish.
And if you're part of our awesome community of blind and visually impaired folks, I have created a survey asking you what your interest is in nutrition, meal planning, and cooking. So I'd love to get some information from you. So you'll also if you check out the information from this podcast, you'll get the information for the survey. Looking forward to sharing more goodness with you.
Thank you so much.
Did you all know that eating healthy is very important, but if you don't eat healthy, it can also affect your vision? And since it's Low Vision Month and RP Month, that's something to consider. So I'm going to toss this over to Sylvia, who's going to talk a little bit about RP and Blindness Awareness Month.
And for everyone or anyone who doesn't know, I have been working in the blindness and low vision field, my whole career, so about 20 to 25 years. Oftentimes people really don't know how prevalent vision impairment is. In the United States, estimates are from four to 12 million people. I know that's a big range. But we really just don't know exactly how many. And a big part of that is because there's a spectrum of low vision.
Someone might have just a small functional implication of vision loss, where they're not allowed to drive or they have sensitivity to light or they can't see in the dark. But what we're talking about when we talk about low vision is uncorrectable eye conditions and the most common uncorrectable eye conditions are macular degeneration, glaucoma, diabetic retinopathy, to some extent diabetic retinopathy, and retinitis pigmentosa. And all of these cause vision impairment. And again, on that spectrum, someone might just be having difficulty doing one task all the way to total blindness.
Very few people, in fact, less than 10% of people with visual impairments have no functional vision. Most people have some functional vision, or what we would call low vision. Low vision is usually what is from 20/70 acuity to 20/200 and 20/200 is the legal blindness cut-off. And just to tell you what that 20/200 means because we all hear those numbers or that acuity, and we don't know what that means: 20/200 means that what someone with 20/20 could see, so someone with perfect vision could see from 200 feet away; the person would 20/200 would need to be 20 feet from to see that same thing.
There's also a part of the definition of low vision, blindness, and legal blindness related to peripheral field. And someone's peripheral field could be impacted in any part of their field, it could be a central vision loss like in macular degeneration, diabetic retinopathy could have lots of different places where the vision loss occurs on that field. So it could be a blind spot in one corner in one eye and a different corner in another eye. It just varies because the retina is impacted.
With retinitis pigmentosa and glaucoma, it tends to be similar, and I say tends to be because there's no one rule, but tunnel vision. So the peripheral field closes in from the outside, in. The main point is to know that Low Vision Awareness Month really is focused on that help is available, that you can learn the skills and get adaptive equipment that can really help you no matter what your vision loss is to be successful and productive. Nasreen, I'm going to make it back over to you unless you have some other questions about low vision.
That's fantastic. I love how you explained that. The eye chart the 20/200 because we never we never think about what those numbers really mean. And what does how far can someone really see that. And that's phenomenal to know that somebody with perfect vision can see almost 200 feet away and, and somebody who has low vision or 20/200 has to be at least 20 feet away from the object in sight. And that's a really good understanding of how acuity works that really helps. Wow, thank you, Sylvia.
Our next guest is a lawyer turned photographer. And we're here to welcome Michael Nye this afternoon. Hi, Michael.
Michael Nye 16:16
Hello, can you hear me? All right.
Yeah, we can
You know after you all talked about snacks I'm starving. Thanks for apples and oranges and cookies and [unintelligible]
We didn’t talk about cookies.
Well, that's what I'm thinking about.
Michael is here to talk about his newest project. And talk about its creation and journey with My Heart Is Not Blind. It's an audio and visual exhibit. Welcome, Michael. And I'm going to turn this over to Sylvia to take forward.
Great, thank you.
So I am so thrilled to welcome Michael to this podcast. I met Michael about three or four years ago and Michael is going to share an audio clip now.
I'm going to play Sylvia's audio narrative, which is about five minutes. And it's one of 46 individuals in the book and also the traveling audio and photography exhibition. So I will start it now.
Sylvia’s Audio Narrative 17:22
I am blind, but I am also very visual. I have images in my mind that are saved from when I could see. And I create images by the information that I gather. Even when I travel or I go to the beach, I create an image of what a wave looks like coming in because I remember what it looks like. So based on the sound of it, I create that image.
I don't think of myself as a blind woman. I am a woman who is a mother, who is a wife, who is a leader of an organization, who’s a daughter, a sister, a friend. I'm all of those things blindness is just happens to be one of those characteristics. I would not be telling the truth if I did not say that is a huge part of who I am. However, I don't really feel like it identifies me.
When I was growing up, my classmates ostracized me, they treated me as if I was almost contagious. And I remember feeling; and I'm going to use this word, and it's the word I mean to use, like an alien on this planet. "You're blind, you can't do anything. You're stupid. You're retarded. No one likes you, you're ugly." And that was all the way from the day I started school through the day I graduated from high school.
I have had to adapt to going from really being a visually impaired person to being a person with really no functional, usable vision. I remember when I was probably in my late late 20s, and it was about time, I probably needed to use a cane. An orientation and mobility instructor said to me one day, look, you have the choice, you can either look blind, and carry a cane, or you can look drunk and not carry one. It probably took me a good 10 years to become really comfortable using that cane.
Adjusting to blindness emotionally is way more challenging than adjusting to blindness physically. There is this perception that people who are blind, that there's something wrong with us. We're not whole beings, that we're imperfect. Every single person is imperfect, we all have challenges, mine just happens to be that I can't see. It doesn't make me less intelligent, less capable, less competent. What it does is make me more courageous, more determined, and more interdependent.
It takes a lot of energy to be blind. Every single day, you're going to encounter something, some challenge that you are going to have to figure out, it's a lot of learning to think differently. And it means being aware of all of your environment. What's under your feet when you're walking along a sidewalk, where people are, when you can't see them, you can feel when there's a presence next to you. Walls and poles, the space around you changes a little bit.
There is a lot that people who are sighted could learn about fully experiencing the world around them from people who are blind. Being aware that there's more than one way to get information. You can even gather information about people's attitudes just by listening. And you can hear it in how their breathing is even silences and pauses.
And too often, information is based on completely what people see. And they're not paying attention to all of those other things that are happening. I can tell when someone's rolling their eyes, or looking in another direction, or texting. Even though I can't see that. I can tell completely by listening.
Sylvia, I admire you so much for your advocacy in your voice. And I love what you said about when you lose your sight. You don't lose your insight. You don't lose your intelligence, memory, your personal history, but you can become more determined and more courageous, and more independent. So thank you so much for your voice. This exhibit My Heart Is Not Blind opened at the Whitt Museum. And during the three months over 25,000 people in the community came, put on headphones, listened to the 46 individuals in this exhibit.
Thank you, Michael, for doing this project. What made you want to do this project? I'm still here just feeling a little vulnerable by listening to my own self.
It's hard listening to your own self. And you know, I've done a lot of projects in my life. I've been, I went over to Siberia in the middle of winter through a bush play and lived with Chukchi natives for a month. Went into a war by myself, refugee camps in the Middle East, lots of issues in the United States. But I think all of my photographic projects have been about wanting to know more. The desire to understand communities, places, situations, unlike my own.
And I think everyone, all of us here listening, I think, from an early age has a hunger to have bigger lives than the ones we were given. So it's about wanting to know more and learn more from others. I like to be invisible.
I'm not blind. I don't know what it's like to be blind. But I do like to learn from others. But to answer your question. 30 years ago, I had an exhibit in Saudi Arabia, and the curator of the gallery said Michael or Mikey, would you talk to a group of international blind students? And I said, Sure, yeah. And they all could speak English, thank goodness. And I just remember their intense listening and their attention, their curiosity. It's almost like a whisper could travel far.
And I talked to them about black and white photography and light and on and on, but soon, they started asking me questions. "Michael, why are you a photographer? What color is black and white? What is something that's beautiful that's nonvisual? What's the meaning of these photographs? The photographs represent reality, how can anyone blind our sighted understand the world outside themselves?" And at that very moment, I felt like we changed places they were given the gallery talk. And I was listening and learning from them.
And so it took me quite a while to start, but I knew I wanted to have these conversations. It took me seven years to work on this project because it takes time to listen. And it takes time to tell a story.
Michael, what would you say is the most powerful lesson you learned?
Oh, my goodness, gracious. I have to make this short because I could surely go on. I think what it means really to see or to have vision, means, it means with your whole body with everything about being present, mindful, listening, like these students stay with intensity, a hunger to know more, do more, have deeper compassion and understanding.
I do think this project is about, really in some ways, not about blindness at all, but it's about our shared humanity and our shared fragility. And it's about incredible mystery of perception, and about adaptation. And I think discrimination grows from the sighted community not understanding or not willing to understand that anyone can adapt to new situations. They just see immediately what happens if they imagine themselves blind, but they don't realize you adapt by learning. But you also the brain adapts it rewires itself to favor nonvisual thinking and orientation. And so it's about basically it's just about understanding and an openness to others. I could definitely go on from there.
Well, you are certainly one of the most aware, generous, kind people I have encountered in my life. And I thank you for doing this project. Because it's been so meaningful and powerful for so many, including myself as a participant. What is next? What's next for My Heart Is Not Blind, your project, your exhibit, the book?
Well, right now, I'm doing a new project. I'm writing essays right now on old photographic projects. I'm almost through with that I've been writing 26 different essays. But on My Heart Is Not Blind I was lucky when he was really all of the people, participants received the Bolotin Award from the National Federation of the Blind with a really generous sum of money. And I swore at that moment to myself, I would use every penny of this money to promote awareness and understanding and so forth.
And so because the exhibit only traveled to six cities and then we had COVID, so I'm setting up a podcast where I'm going to play all 46 stories and interview some of the people that I can and talk about each story and they are I tell you, they're dripping in wisdom and insight. Every single one is profoundly different, original, and profound. And so I would love for you to pass the word around. It's their stories. It's not about me at all. It's only about people's voices and insights and experiences, all of us have a vulnerability. And I think that people in this exhibit are very brave to, to speak out and use their own voice.
Well, I can't wait to hear all of the stories. I've heard some. But that's going to be an amazing podcast. So everyone be on the lookout for the My Heart Is Not Blind Podcast coming soon. And, Michael, if people wanted to order your book, where do they find that?
They can find it just, you know, go online, there's, there's numerous places that sell the book to Trinity University Press, Amazon, and so forth. I just found out last week, I didn't even think of this until you brought it up. But it, it was the fourth-best, let me see here real quick, nonvisual book ever. It was rated the fourth, ever of any book about nonvisual stories or so forth. Which to me, that really talks about the people in this exhibit and the power of their voices.
And so I hope people will order it, you'll learn, you'll find strategies, you will think slightly different. These stories are profoundly honest and authentic. And they're not all about they're not all success stories, what stories are there about all of us about, just about life.
Thank you, Michael, so much for doing this project. And I encourage everyone to go out and get the book. Look for Michael online because it truly is an amazing project. And I was really honored to be a part of it.
Thank you for this podcast, and thanks for inviting me on.
You're welcome. Nasreen I'm gonna throw it back to you to wrap us up.
Thanks, Sylvia. I really appreciate that. Wow, Michael incredible work there. Really have to check that out, everybody. I want to take this time to thank both Michael Nye and Alicia Connor for being here with us this afternoon for this podcast. Please share this podcast. Ask your friends to subscribe and follow us and join us for our next podcast. Bold Blind Beauty On A.I.R.
Transcribed by https://otter.ai