Blind from Birth: A Stepmother Shares (Replay)

podcast
Written By Carole Blueweiss

Episode Summary

This is a  replay of a previously released episode, for Blindness Awareness Month. Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. She introduces us to how she helped Josh spatially map his environment,  and talks about how the brain’s map differs for people who have vision versus people with no vision. Julie is a mindfulness coach, and she emphasizes the importance of patience, embracing “failure,” using tough love to support independence, and enhancing the senses through mindful practice.

For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here:  https://www.youtube.com/watch?v=8PNWizDEn30

In the next episode, Dr. Blueweiss interviews Josh, who shares his perspective on life in a world built by sighted people.

Find & Follow Julie

Julie’s Mindfulness Art Facebook Page
https://www.facebook.com/julieburch4art

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https://www.facebook.com/Jbrileeauthor

Julie’s Author Website
https://julietbrilee.com/

Subscribe to Julie’s mailing list for information about upcoming books, nature, recipes, and life with Josh.

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The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works

  • Co-Producer and Marketing Coordinator: Kayla Nelson

  • Production Assistant: Becki Leigh

 

Listen on:

 

  • 00:00:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts and connection inspires change. I am your host, Carole Blueweiss. Today, my special guest is Julie Burch. I met Julie in a Toastmaster’s club and I learned that she’s an art teacher, an author, and a mindfulness coach. Julie tells me how she helped to raise her two stepsons, Josh and Shay.

    [00:00:29] Josh was born blind and it was Julie’s creativity, mindfulness training, and intuition that played a huge role in raising Josh to be the independent 48-year-old man he is today.

    [00:00:42] Julie Burch: Someday kiddo, you’re gonna live on your own and you need to know how to do things. At risk of being a mean stepmother, I was not going to treat him like a helpless infant.

    [00:00:54] Carole Blueweiss: There’s so much Julie shares with us that is truly inspiring, sometimes funny, and overall quite amazing. I don’t want to give it away. I do want all my listeners to keep in mind that never seeing the world versus losing one’s sight later in life are two very different conditions and affect the brain in different ways.

    [00:01:14] Let’s just say, if I were to close my eyes, I still would not be replicating anything close to what Josh experiences, because he has never seen. Josh will speak more about this in his interview, coming up in a few weeks. Julie points out that individuals who are blind are not born with superpowers like extraordinary hearing or extra sensory touch.

    [00:01:37] They must develop these senses by focusing, practicing, and paying attention. Reflecting on the conversation with Julie, I realized how I take my ability to make sense of my world through my eyes and the spatial orientation that my brain created for me for granted. Julie and Josh give us a sneak peek on how they managed to adapt and grow as people and how they navigated the unknowns.

    [00:02:01] Let’s listen to what Julie has to say.

    [00:02:09] Welcome to Wisdom Shared, Julie.

    [00:02:11] Julie Burch: It’s delightful to be here.

    [00:02:13] Carole Blueweiss: Tell us about your children.

    [00:02:15] Julie Burch: My husband came as a package deal. He came with two boys and those two boys, I partnered with my husband to raise. There was a biological mother and there still is. When I got together with my husband, joshua was one and the other boy was four.

    [00:02:36] And Shay was very spirited. Josh was very withdrawn as a one-year-old blind child, totally blind. His optic nerves never developed. It was quite a learning curve to parent a blind child, but frankly, the more challenging of the two kids growing up was his brother. A lot of times in a family where there’s someone who has a disability, the other child winds up needing attention or engaging in attention-seeking behaviors, because they feel like this other kid is getting all the attention.

    [00:03:20] That said, he also had an oppositional personality and we wound up going to counseling for that. Originally, family counseling because of his brother’s issues. When Josh was little, he was just adorable, little blonde haired kid. And back in those days, we would take the boys to video arcades and he was so cute and he was blind and people would just come up and give him tokens.

    [00:03:52] But you can imagine that went over really well with his brother. We’d have family sing alongs with the guitar. We really tried to incorporate music into our lives because of blindness. He really opened our eyes and our minds to increased possibilities because we were always looking for ways to adapt experiences so that he could have a richer and more normal experience of life.

    [00:04:17] Carole Blueweiss: I’m trying to visualize the arcade scene. How did people know he was blind?

    [00:04:24] Julie Burch: His eyes, were kind of rolling around in his head. It’s common among some blind people to have eyes that don’t look quite normal. Like you and I are focusing on one particular place, but Josh’s eyes would kind of dance around. They were not focused. He might’ve had a cane too. He didn’t get a guide dog until he was an adult. It would’ve been clear that he was not the same as his brother. He was not running around the arcade, trying this, trying that. He was requiring a lot of assistance and guidance. And sometimes people would ask.

    [00:05:07] Carole Blueweiss: And the other visual that I get the pinball wizard.

    [00:05:11] Julie Burch: Yes .

    [00:05:12] Carole Blueweiss: Do people mention that to you or the way you just talked about an arcade and a blind child going to an arcade and having a lot of fun.

    [00:05:19] Julie Burch: I think that for other people, that’s what was in their mind. I don’t think Josh was ever anything you could call a pinball wizard. He liked the sounds of the games. I’m not sure he even understood what was happening in there. All his experience would’ve been the auditory portion. He wouldn’t…the thing that he didn’t have, and in that movie or that song, Tommy deaf, dumb and blind boy, that when you are, when you come into the world without vision, and if you think about how many things you have a mental map, for how many things you visualize. He did not have a mental map. And so he would not have understood what was in that machine or what was going on in that machine. Actually, what I read was in the first few years of life, a lot of kids who are blind, they don’t understand that they’re even different.

    [00:06:14] So many things that we have concepts for, he did not have concepts for. And the lack of a mental map makes it especially hard for him to get from point A to point B. It’s linear to him. So space is more of a linear experience. We experience time in a linear way because it’s just one moment after next.

    [00:06:36] Well, in order to have a mental map, you kind of have to have a spatial orientation to the world. If a person has vision and they lose it, then they have had the spatial orientation to the world, and they can perhaps understand where things are in respect to one another. But Josh never had that. He had to learn it. And I’m not sure if it’s ever going to be anything that’s similar to what we have.

    [00:07:07] Carole Blueweiss: When you say mental map, as you kept talking, I was understanding more about what you’re referring to, but would you agree he had some kind of a mental map of his own? It just might not have been perhaps the one, you know, you spoke of because he still had an imagination, right?

    [00:07:25] Julie Burch: He had an imagination. But if I say the word map, if I say that to anyone, chances are that they see something that has length and width. So there’s a lay of the land. And I can’t really comment on what his lay of the land is. But I think that it’s far different than what we imagine. There is a common misconception that people who are blind automatically have better orientation to sound and tactile, to smell.

    [00:08:04] There’s this automatic assumption that the other senses just ratchet up to accommodate. But the fact of the matter is, as far as I can tell, that has to be taught. The parts of the brain that would be involved in that would be honed through practice. And I have tried to teach Josh certain things. I’ve taken him to a park where there’s a highway nearby and tried to teach him how to navigate, but keeping the orientation of the sound in a particular place, and also keeping focus on different tactile experiences as he walks. And having some goal in mind of where he’s going to reach on that journey is a lot of juggling in the mind. Eventually one of his mobility teachers said, I don’t think that park’s the place for you to even go alone. That was disappointing to me.

    [00:09:07] I’m like, well, just keep that on your right. But on his direct right versus behind him to the right is a little bit subtle. And then the guide dog just took him into the road. I’m like where in the heck is he?

    [00:09:25] Carole Blueweiss: Oh, no.

    [00:09:26] Julie Burch: I drove down to the other end of the park waiting for him. And finally I got back in the car and I went looking for him. But the whole mental map idea is one that if a person’s had vision, they are going to have that mental map. And if a person has not had vision, they’re gonna have to learn other strategies.

    [00:09:43] Carole Blueweiss: You mentioned somebody, you didn’t say coach.

    [00:09:45] Julie Burch: He had a mobility teacher.

    [00:09:46] Carole Blueweiss: Mobility teacher, I’ve never heard that.

    [00:09:48] Julie Burch: Yes. It’s called orientation and mobility. And these are specialists who help blind people figure out where things are and how to get from point A to point B in any given situation. So even now when he moves to a new location or if he starts a new job, there will be a special person assigned from the Division of Blind Services to help him orient himself.

    [00:10:15] There’s that mental map thing, where his strategies are different than ours. We’re going to have a layout in our head that we can call up and reflect on later. He’s going to have landmarks. When he moved in with us for a while a couple years ago, he’d been with us and moved out, but he moved in again. He didn’t have the layout of our new house.

    [00:10:37] It’s good enough when he visits, but if he’s gonna get around by himself. So I oriented him to the house and what blind people do is called trailing. So he would hold his hand out and he would touch something as he traversed. So we, you know, you trail out of this room and then you expect to find this piece of furniture and you trail along this piece of furniture, then you expect to find this piece of furniture and then you come to this opening. But if you take three steps and go left, you’ll be at the hall that leads to the restroom. It’s linear. That’s what I mean when I said it’s a linear experience.

    [00:11:11] Carole Blueweiss: Would he use a stick?

    [00:11:13] Julie Burch: No, not at home. The thing that he would do at home is he would trail. And the thing that would cause maybe the most conflict for us would be that he wouldn’t trail. And he would be in the middle of the room. And when he’s standing in the middle of a room, he doesn’t know where he is, unless he hears something that tells him where he. And I would say, what are you doing out there in the middle of space? Because space is disorienting for a person who’s blind, unless they really know where they are.

    [00:11:49] If they’re not touching something or listening to a very loud landmark, then they are lost in space. Josh also wears hearing aids. Before he got the hearing aids, he just couldn’t hear very well. Now his level of hearing loss is not so great that it’s a huge issue, but I anticipate as he ages, it might become worse.

    [00:12:15] The hearing aids were provided by a vocational rehab when they were getting him a job. If he had not been involved with vocational rehab, no organization that we know of would’ve provided them. And they’re very expensive.

    [00:12:27] Carole Blueweiss: Did you know from childhood that he had some hearing loss?

    [00:12:31] Julie Burch: I don’t know when it started. It wasn’t apparent when he was a kid. I bring that up because again, he has to learn to tune into sound. And of course that takes a tremendous amount of focus and it takes sensory clarity. I’m a trained mindfulness coach. And ever since I got trained, I have been training Josh in mindfulness meditation.

    [00:12:56] Carole Blueweiss: Wow.

    [00:12:57] Julie Burch: And those are two of those three mindfulness skills. And he has embraced mindfulness meditation, and he comes to the Thursday night mindfulness group that I lead. And he practices. I have taught it to him so that he can cultivate that sensory clarity, so that he can focus in on where sounds are coming from.

    [00:13:22] Carole Blueweiss: If there was ever a good use for mindfulness, it would be right there.

    [00:13:25] Julie Burch: Absolutely. Absolutely.

    [00:13:27] Carole Blueweiss: Is mindfulness in your experience at all incorporated into special education? In his case, was it?

    [00:13:37] Julie Burch: No, not that I know of. In his experience growing up, he was pulled out for a resource room where he mostly worked on braille skills. We had to work on a kid who’s going to be relying a lot on the tactile sense, he found certain textures to be problematic. We would have tactile experience activities at home. So we would be finger painting, although to him, he wasn’t making anything, but we would have play with pudding or with shaving cream.

    [00:14:19] I would, make these big bins full of dried beans of different sizes and hide things in there. There were always little tactile games and activities at home to help develop his tactile skills. And then at school, of course, he was expected to do the work other kids did. And

    [00:14:38] Carole Blueweiss: He was in an integrated school, would you call it that?

    [00:14:42] Julie Burch: Yes. He went to the school, the regular elementary school, and he was pulled out for vision resource. So mostly in vision resource, they were reading to him and helping him learn braille. And braille is a tough thing. It is a tough thing for a person to learn. For one thing, doing your assignments in braille is so much more cumbersome than doing a regular assignment. If you’re doing a long division problem in braille, it’s gonna take maybe a sheet of paper 12 by 12 to do one problem. Whereas we can glance at it, he would have to go back and feel every step of it. It was really hard for him.

    [00:15:24] It was hard for us too. We both learned beginning braille. I wound up embracing braille. I would take books that I thought he might enjoy, and I would braille the whole darn book so that he could read it on his own.

    [00:15:38] Carole Blueweiss: How do you do that?

    [00:15:40] Julie Burch: There’s a device called a braille writer and looks like just a big, heavy metallic device. Giant, weighs about 10 pounds. And it has six keys and a space key. And a braille cell has six different dots. You learn to press the keys for combinations of dots. There were volunteers in the local area who would braille books for him as well. So he had a little braille library. It wasn’t huge. There was also a lending library organization where we could borrow braille books and return them.

    [00:16:11] Nowadays, I think most kids are gonna rely on audio books, but back then it was braille. There weren’t so many audio books. That was a new thing. So learning braille was a real toughie and it was hard helping him with his homework because I couldn’t just glance at it. I’d have to have him read it to me, or I would have to try and make it out myself.

    [00:16:36] Sighted people read braille by sight, not by tactile. So I would have to look at it and see if I could figure it out. But I wouldn’t necessarily know everything because there’s braille and then there’s another level of braille that’s like shorthand where the symbols are a little different. And as he went on in school, he graduated to that kind of braille, which was harder for me to help him with. I will never forget what we call the Julius Caesar incident.

    [00:17:01] I was trying to make something in the oven for my husband and I. He is trying to read and answer questions and my book was not lining up with his experience with what he was reading. It was challenging work, but also the braille wasn’t making any sense and I’m trying to help him and cook at the same time.

    [00:17:23] Well, that was probably a really good example of why multitasking isn’t a great thing to do. I was cooking Tostito’s in the oven. And they caught on fire and I whip ’em out of the oven and they fall on the floor and I’m beating them out with a towel. And Josh is at the counter going, what the world is going on here? I’m like, fire! It was so funny, a kind of a metaphor for the mood I was getting into because I was so frustrated with his braille. And then finally we figured out he didn’t have any of the margin notes or any of the other notes that they put in a play for when you’re reading it in a textbook, there was all these little additional notes that weren’t actually the lines of the play. Well, I can’t say that we ever got that homework done.

    [00:18:21] You were asking about his experience with teachers growing up and did I feel like they met his needs. And I would say that I have two levels of perspective here, the perspective of being the parent and the perspective of being a teacher and having a certain amount of empathy for what teachers are dealing with.

    [00:18:42] Joshua had a variety of teachers. There’s the ESE or the exceptional student education teachers is what we called it then. I don’t know if they’re calling it something different now. And we have the classroom teachers. I imagine that when a classroom teacher was told she was getting a totally blind kid in her class, they were probably a little bit stressed, to put it mildly.

    [00:19:11] Some of them really embraced the opportunity to have him in their class and tried to vary the lessons to meet his needs. But let’s face it, he couldn’t follow along any of the worksheets, any of the readings. He couldn’t do any of that unless it was prepared for him ahead of time. That meant absolute structure for the teacher, because she had to be able to give to volunteers the material that she was going to use ahead of time.

    [00:19:38] And I’m sure that there were moments where that didn’t happen in a timely way. You’re relying on volunteers mostly to get it all brailed and prepared. It’s really amazing how well it did go. There were a couple other blind kids who came into the school system while Josh was in it. And those kids sometimes had to share materials with him.

    [00:20:02] And I’m talking about to the point where it’s two kids at one desk on one braille book. So that was tricky. I think that they did the best they could. There was an art teacher who refused to have him in her class because she said it’s a visual arts program. Some of his teachers were fabulous and some of his teachers were not as helpful as they could have been, partially because they wanted so much to see him succeed that they gave him too much of the answers and helped him maybe a little too much. So that got in the way of his embracing and becoming more independent with material. We were afraid that middle school would be too hard for him.

    [00:20:51] Kids who are challenged with a huge issue, like blindness wind up a little emotionally and socially behind some of the other kids. And he didn’t have the ability to stand up for himself as much as the other kids. That’s probably one of the reasons why we eventually got him into karate so he would find his own power.

    [00:21:17] And he was like from the get go rather passive. You know, when you think about how much kids run around and explore things, and if you’re blind, you’re not necessarily doing that. So he got very comfortable being a little more reticent. So often we get him into an activity or he’d be in a situation either on the playground or wherever and he’d be left on the sidelines because the other kids were running and playing and tumbling and doing what they do. And they didn’t accommodate him. Most kids are not naturally real altruistic in that way, where they’re gonna go and seek the kid who can’t do it and bring them in and loop them in and make them a part of it. I didn’t find that to be true in any situation that we ever encountered.

    [00:22:05] I wanted him to have a good experience. I wound up becoming a a Cub Scout leader so that I could ensure that he would. And I made sure we had activities where he could do it, but going back to school, when he was going into middle school, we thought, oh, I don’t know if middle school will work for him. It’s a tough place. Kids can be rough at that age level. So we put him at the residential school for the blind for a year. We wound up dropping in a few times, unannounced. This is no reflection on the school of the blind right now, because I don’t know what it’s like right now. But at that point in time, we weren’t real impressed.

    [00:22:49] I can just remember walking up to one of the classrooms that he was in. And the teacher was at their desk, reading the newspaper and the kids were like coloring with a crayon on a screen. That could have been an isolated incident. We thought, if we’re gonna have to monitor the situation this closely, we might as well put him back in the public schools in our own town where it’s easier to monitor.

    [00:23:11] Which is what we did. But I’ll tell you what, it was an ongoing thing. And we were learning as much as he was. We were learning how do we help him learn this information? We were learning how do we parent him effectively? And we were learning how in the world are we gonna help him with his homework? I remember once he was doing his science homework and when we were reading the passage together, it became evident that he had no clue what rust was.

    [00:23:43] Because you take it for granted. Oh, that’s rust on that. Kids see it. And then because they saw it, they might feel it. Josh had no experience with rust. So we had to go outside and find some rust so he could feel it. And then he would understand that rust is this, you know, process where this is degrading and this is what it feels like. Unfortunately, we were able to find it on our car. Anyway, it was a challenge.

    [00:24:07] Carole Blueweiss: It’s just so interesting that there’s just so many challenges that kids can have. And there’s only so many specialized schools and it’s not like you could choose between three schools that worked with children that were blind. You had that one school that unfortunately wasn’t up to par.

    [00:24:26] Julie Burch: That was a residential school, but what they would do in our town, there would be a magnet school where we have the program for the visually impaired. So it’s my experience that different schools will specialize in different exceptionalities.

    [00:24:40] And that way they can put the resources in one place and meet the needs of the children better. And you can’t count on them to go to your neighborhood school. He didn’t ever go to our neighborhood school because the school where the resources were wasn’t in our neighborhood.

    [00:24:54] Carole Blueweiss: Oh.

    [00:24:55] Julie Burch: But that’s okay. It was across town. We could drive over there. I was not unhappy with the school. And frankly, as a teacher, I can say that you often find yourself in a position of having a lot of kids with let’s face it, every kid is unique, but having a lot of kids with different needs and can you meet all of their needs? That’s the challenge.

    [00:25:19] Can you meet all of their needs and still meet all of the responsibilities and guidelines and objectives placed on you as a teacher? It was a situation where we had to remain involved and we had to keep, our eye on it to see where was he needing help and how can he keep up? And he had some really great teachers.

    [00:25:40] One teacher in high school taught English through lyrics of songs and especially the Beatles. He became a huge Beatles fan at that point, huge Beatles fan. We found some fabulous teachers who really learned how to teach a blind person music. Unfortunately, when all is said and done, his favorite instrument is the radio or Spotify.

    [00:26:05] If we thought that him being blind would give him additional privileges at a concert, we would totally play that card. And he got to meet Doc Watson. He was a country folk singer from North Carolina. And we just had a great time taking him and exposing him to different musicians, writing to them on his behalf, and then they would send him things.

    [00:26:29] And that would be pretty cool because since he wasn’t having the experience that a lot of kids have in life, what other experiences could we get him to make up for that?

    [00:26:40] Carole Blueweiss: Sure.

    [00:26:41] Julie Burch: That was kind of our rationale.

    [00:26:42] Carole Blueweiss: And all kids growing up have fluctuations of self-esteem. How was his in terms of comparing himself to others?

    [00:26:51] Julie Burch: He really had to work on assertiveness skills. Because for anyone who has a disability, the world is not going to come rushing to meet your needs. You have to learn to be assertive and ask for what you want. And that’s an ongoing challenge for Josh to learn to be, you know, assertive in any situation. And I have to say I’m really proud of how he has taken that challenge to be assertive, to get what he wants, to ask for what he wants, to not back down.

    [00:27:18] But I think that that did not come naturally to him as a child, whereas his brother was probably way high on that assertiveness scale. And maybe that was part of the issue. His brother was pretty domineering and Joshua was pretty passive.

    [00:27:35] Carole Blueweiss: And what was their relationship with each other?

    [00:27:39] Julie Burch: Growing up, of course, I can’t completely speak to it because I’m not in his brother’s skin and also his brother’s deceased now, so we can’t ask him, but there was a sense of his brother wanting to protect him. But then there was this other sense of his brother feeling in great competition with him. Josh had special meetings, special teachers, people looked at him and said, oh, poor blind kid.

    [00:28:07] And wanted to give him things. His brother was able to run and play and have activities with the cousins and football and different things that Josh couldn’t do and didn’t participate in, but I’m not sure it really registered with his brother. Their life experiences were so different. They were not close as they grew older.

    [00:28:28] Carole Blueweiss: How was that for you in the sense that you had two children that were so different? How did you manage that?

    [00:28:38] Julie Burch: That was very difficult to manage, actually. We went to family counseling, we worked on whatever system we could put in place within our household to make sure everybody was being responsible for what they needed to be responsible for. It was a constant challenge, honestly.

    [00:28:59] Carole Blueweiss: And were you and your husband on the same page in terms of strategy and how to raise both your children?

    [00:29:10] Julie Burch: Now, I am the step parent. So I always thought that I was not to take the lead and yet that’s tricky. I was parenting them, but I always defaulted to what he wanted to do. But he and I were usually on the same page. That was helpful. Because Josh’s brother had his own issues and anyone who’s a stepparent can tell you that you’ll see more clearly the issues of a kid than their biological parent.

    [00:29:44] Carole Blueweiss: Yeah.

    [00:29:46] Julie Burch: It’s rough. When you don’t agree on things or when you see things clearly and somebody else doesn’t want to see them. I think it was hard on Larry to be the father of a blind son, because he was an active guy and he and Shay, they would go out and do activities. They’d play Frisbee or toss the football or whatever. And Josh couldn’t do those. It wasn’t something that interested him that much. But he couldn’t do that with them. I wound up teaching him things in the house.

    [00:30:24] We had behavior modification systems, little rewards. And I’m not sure if it’s different how they would do it now, but things like, this is gonna sound bizarre, I would get out his clothes for him or I’d have his clothes organized. In the morning, he was to dress himself. Okay. But he would come out rather late for breakfast and his clothes would be on inside out.

    [00:30:54] I’m like how in the dickens did that happen? I mean, they weren’t inside out to start with, and can you feel that the pockets are on the outside now? I mean, wasn’t it kind hard to zip it up? So things like that. Motivating him to care about things that we care about was tough. He didn’t see them, it didn’t matter to him. So getting him to value things that we typically value, because we can see was a challenge.

    [00:31:29] Carole Blueweiss: And how did you deal with the fact that his clothes were inside out? Did you let him go to school that way?

    [00:31:34] Julie Burch: Heavens no. No, go change. Go change how you have those pants on.

    [00:31:42] Carole Blueweiss: And did you help him or did you let him figure that out?

    [00:31:47] Julie Burch: I on purpose made him change his own clothes. Yes. I didn’t. I would point out that they were inside out because he wasn’t tuned into that. It didn’t matter to him. I was tough. I’m gonna say that. And when I say tough, I had a hands off approach. It’s not easy to do that, to let somebody figure it out, bumble along, fix it on their own when it would be so much faster for me to do it for him. That was hard to do. When Joshua was a preschooler, he was not motivated to be independent. And I wanted him to learn to be independent. I thought, someday kiddo, you’re gonna live on your own and you need to know how to do things. So right from the start, right from when he was like a little kid, you open that door, you can turn the knob. Open the door and we’ll go in.

    [00:32:47] I was always scouting around for what can he do? And then asking him to do it for himself. I call that a tough approach because it was meant to instill independence in him.

    [00:33:03] Carole Blueweiss: Tough love.

    [00:33:04] Julie Burch: Tough love, yeah. Tough love. I mean, it’s how easy it would it be for me to help him change his clothes? How easy would it be for me to open that door or to do this or that for him, it would’ve always been easier and faster. And so it took a tremendous amount of patience, but also I just dug in that he was going to be independent. Even though it didn’t always make me the most popular person at risk of being a mean stepmother, but I was not going to treat him like a helpless infant. I was going to encourage him to function at his age level to do things that he could do, to learn how to do things.

    [00:33:43] You will carry your plate to the sink after you eat your meal. Do you know how much silverware we lost in the garbage ? You know, and if I caught it, that was great, but it was important. He lives on his own now. He lives on his own. He cooks on his own. He cleans on his own. Thank goodness he has a house cleaner once a month because blind people cannot see everything that needs to be cleaned, but he does it all on his own.

    [00:34:11] Carole Blueweiss: That’s testament to you. I meet many parents and for no fault of their own, because we all just love our children, whether they have special needs or not, how much we do for our children. Oftentimes I find myself coaching the parents to let them figure things out more for themselves. It might take longer, but they’re gonna learn and that learning is gonna help them develop. And it sounds like you knew that intuitively or from your training. It’s a great example of how now Josh can manage on his own.

    [00:34:45] Julie Burch: I think one of the challenges that he has as an adult would be the girlfriends that he has will be inclined to wanna do for him the way a parent might have when he was growing up. I think as women, we can be nurturers. And we can want to do for our men. We are constantly encouraging him to not allow that to happen because he will not benefit in the long run if he lets anybody take care of him. And it’s one thing to take care of someone who is fully able to take care of things themselves.

    [00:35:23] And most of the time does, but then you’re just like the icing on the cake. Oh, let me do this for you, dear. But it’s a completely different thing if you’re blind and you’re with someone a lot of the time, and they’re just taking over and taking over things you could be doing for yourself. So I think that’s his challenge now, but that was always his challenge growing up, everybody in his life pretty much, besides me, wanted to do for him. He had grandparents, he had aunts, and he had other people in his life who just wanted to do for him. And it’s logical. You see someone, your heart goes out to them and you want to be kind to them. And how do you show kindness? You can show it by food or service or kind words, whatever. But when you show kindness to someone in such a way that it is disempowering in the long run, the person you’re being kind to, it’s not kindness.

    [00:36:20] Carole Blueweiss: It’s such a paradox and it’s subtle to find that balance. What have you learned from Josh? I mean, you’ve obviously learned many things, but just what comes to mind?

    [00:36:38] Julie Burch: I’ve learned how to be patient. I have learned so much about human nature and seen, experienced, heard things that I never would’ve if it weren’t for him. I continue to do so even now, when he shares with me experiences he’s having. He opened the world to me in a way that I never would’ve known, so many experiences I’ve had, I wouldn’t have had without him. Kinds of music, experiences he’s had with people. The level of trust that he has, I’m inspired by.

    [00:37:10] I can remember him telling me. I’m gonna go to this and such. I say, well, how are you gonna get there? I’m gonna take the bus. Well, what will it be like when you get off the bus, how will you get from point A to point B? There’ll be someone to help me and most of the time, there is. I can remember driving down the road and seeing him walking down the road and going, oh my gosh, there’s Josh!

    [00:37:40] And if I could, I would swing over and like pick him up. On the other hand, there’s been a time or two where I’ve said, oh, by the way, where are you gonna get dropped off? There’s no sidewalk or anything. But the trust that he has in the goodness of the universe and the goodness of mankind is astounding.

    [00:38:02] I have learned so much about human nature and the ability to overcome our challenges. He has such a wonderful can-do attitude. An attitude that yes, I might have this challenge, but I’m gonna have a good life anyway. I’m going to really enjoy my life. Because of his attitude and because of his abilities and his willingness to learn things and his willingness to show up as the version of human being that he is – I’m Josh, this is me, who I am, my flaws, my strengths, my quirks, my setbacks. It’s it’s the whole package. Just from his willingness to show up in life that way and try new things. He’s willing to find a place where they’re having a little concert and just get himself over there and go by himself and sit by himself and be. And if someone talks to him, great. But being willing to take that risk, to show up on his own in a strange place. Boy, if he can do that, I sure should be able to do that.

    [00:39:09] So even as naturally shy as I was and how that’s been something for me to overcome, boy, is he a role model for courage. Because of that, I am an author and in my books, I have disabled individuals and I like to have a blind person in my book. And I also have characters with other disabilities because one thing that Josh did is he opened my mind and my eyes to the experiences of people with other disabilities.

    [00:39:49] Carole Blueweiss: Can you think of any movies where a person with blindness was depicted as you would like them to be depicted?

    [00:39:58] Julie Burch: Josh really enjoys the movie Scent of a Woman with Al Pacino. That’s an old one. What I like about that is he played a character who is rather caustic, rather irritable. And what I like about that is blind people aren’t superhuman. They don’t have superhuman abilities. They’re just people with whatever personality a person has. And I think that’s important to remember, to give people full credit for being a three-dimensional human being and being a unique individual. A unique individual who has a unique set of challenges, but don’t we all have a unique set of challenges? The difference is the world is not so accommodating to their unique set of challenges. And it’s a little easier to navigate if you have vision.

    [00:40:49] Carole Blueweiss: Yeah, I’d say. When you are out in the public or with friends, do you notice others shying away from Josh, or do you notice the opposite, they’re coming towards him? I just wanted to get that clear for people so that you could tell us how you deal with whichever scenario you’ve experienced most.

    [00:41:11] Julie Burch: When I say people were kind and nice, that was when he was really little and cute little kid, like a little blonde-haired seven-year-old. What I notice that as an adult, what really helps people interact with him is his guide dog. Because most people will approach someone who has an animal. People love dogs. Hey, you know, what a cute dog. What kind is it? What’s his name? So Josh’s guide dog is really like the ticket to his interpersonal connection if he’s out in public or with a group of people, it gives people something to talk about.

    [00:41:47] What I would like to say is that it takes a certain amount of courage to reach out and talk to a stranger. It takes courage to do that. I think it does. Maybe because I have a history of shyness, but it takes courage to say something to a person you don’t know. And yet if a person’s blind, they don’t know you’re there.

    [00:42:10] So when you see a blind person in a store or at an event, and they are by themselves, they don’t know you’re there until you speak to them. And so speak to them. Ask them a question. It could be very casual and superficial, and then that might lead to something deeper. Just like any conversation with a stranger might.

    [00:42:32] I cannot tell you how many times I have taken him to church where people have completely ignored him.

    [00:42:39] Carole Blueweiss: Really?

    [00:42:41] Julie Burch: Oh, completely ignored him. That is very common. And were it not for the guide dog, perhaps they would not see him at all. So the blind person is the invisible person on one level. On one level, they’re highly visible. Josh is a big guy. He’s like six foot three, and he could be like a defense on a football team, which is not to his advantage being blind. Let me tell you, talk about a bull in a China shop. But he’s a big guy and yet, for some people, he is invisible because they don’t know how to talk to him. They don’t know what his experience is. So it’s easier not to.

    [00:43:23] And I would say what a shame. Because he can’t reach out to them. He doesn’t know they’re there. And that goes all the way back, you know, back to childhood. He doesn’t know you’re there. And when he was really little, if you walked down the hall and he was in his room, he would go, “hi!” Because if he doesn’t know who you are or where you are or what you’re doing, he just hears a sound.

    [00:43:52] I wish people would reach out and talk to him more. And it’s rather shocking to me how long it took him to find a church where people would treat him like an individual that was worth knowing. There’s been a couple churches that I know of that have treated him that way. And that was maybe the most heartbreaking part of parenting someone who’s blind is seeing the isolation because people avoided talking to him. And when he was growing up, the other kids leaving him on the bench, running and playing.

    [00:44:33] Carole Blueweiss: Getting so much attention. And yet there was so much in his development that was the opposite of attention. What’s interesting too is just the idea of development and how children, you know, with disabilities and just children in general, your life changes with your age and how that, you know, is dependent on so many factors.

    [00:44:54] And one big factor is society and prejudices and marginalization and stereotypes and fear. I have actually this blind man, his name is Neil, in my neighborhood in New York. People know him and they help him cross the street. He doesn’t have a dog. I wonder to myself, is he bothered that I’m trying to be nice to talk to him or is he welcoming that even though it seems like he likes it, but you wonder because I’m not him and it’s, he’s such a different person. But I think what kind of what you’re saying is if you put yourself in their shoes, everyone’s the same. So of course he would wanna interact. And if he doesn’t, he’ll say so.

    [00:45:33] Julie Burch: Right, right. I mean, are you annoying him? I don’t know but that’s really, it’s an individual thing because he’s just another person. But the fact that you’re reaching out, you’re giving in an opportunity to talk to you if he wants to. Whereas if you don’t reach out, you don’t exist to him, maybe. Maybe you’re just sounds on the sidewalk walking away. And so you have to give him that opportunity. Then at least he has a choice. And when Josh was growing up, he had very little choice in that respect because people, I think in general, avoided him. Adults talked to him more than kids. So he always had a really nice vocabulary because adults were more inclined to talk to him.

    [00:46:16] Carole Blueweiss: Is there anything I have not asked you that you would like to…?

    [00:46:20] Julie Burch: Well, I wanted to talk about guide dogs. We didn’t have a guide dog for him growing up. I don’t know if I regret that or not, but people think guide dogs are the panacea. The guide dog helps him with the safety issue. However, if they don’t know how to go somewhere, the dog doesn’t know because the dog can’t read a map. If it’s a place you always go, the dog might go there. But I’ll never forget, once I was handing Josh something on a paper plate and his dog just scarfed it right off that plate.

    [00:46:49] So that was one of his first guide dogs. That guide dog also walked him right into a low hanging tree branch. So I’m like, okay, the dog doesn’t know how high that branch is.

    [00:47:01] Carole Blueweiss: Interesting.

    [00:47:02] Julie Burch: I was walking Josh and he at the time had a girlfriend who had a guide dog. So they both had guide dogs, right? And I’m walking them into a restaurant and what they do is they ask that they command the dogs to follow me. So I’m ahead of one of them. And we’re like a little parade, right? So we’re going into the restaurant and we go through the front door and we walk into the restaurant. They’re right behind me, you know, watch and follow, watch and follow, they’re telling the dogs.

    [00:47:35] And we go into the restaurant and we take a right. And then we take a left and I can hear ’em behind me. And then all of a sudden we get to the table. And they’re gone. Where did they go? Well, we had to take this left and walk a few feet to the booth, but if you would go straight, you would go into the kitchen and the dogs knew where the food was.

    [00:47:56] So I’m like, where are they? The dogs had led them right into the kitchen because those dogs knew where the food was. I thought that was hysterical. I would have to say there are opportunities for humor when you’re living with someone who has a particular disability.

    [00:48:17] Carole Blueweiss: We just assume that they’re also perfect because they’ve been trained to be perfect, but that image of guiding Josh running into the tree.

    [00:48:24] Julie Burch: In the final analysis, dogs are dogs. And they’re pretty amazing. And they’re wonderful companions. But the bottom line is, a guide dog is not a panacea. He is going to be a lot of work. When you pick up after your dog, when it uses the restroom, imagine doing that blind.

    [00:48:43] Carole Blueweiss: Yeah, I was gonna say, who takes care of the dog?

    [00:48:46] Julie Burch: And then there is no additional funding. So once you get a dog, you know how expensive pets can be. And Josh had one guide dog that had a lot of dental problems. A lot. And there was no assistance for that. It is not easy for people who are blind who have a guide dog. They have made a huge commitment and they’re devoting a huge amount of their own resources to that dog. And they don’t usually have a lot of resources.

    [00:49:13] I think people who are blind are one of the most unemployed group of people who are disabled. Even though there is some adaptation made for people who are blind. It is still probably easier for employers not to make that adaptation. There are very few jobs out there for people who are blind and then they have to have the special equipment.

    [00:49:35] Yes, the Blind Services will sometimes come forward and install that special equipment. But it’s still hard for them to find work. And then they have to be able to get there. Fortunately, in some communities, public transportation has special accommodations for people who are disabled, but not all communities have that. So when a blind person is living somewhere, there’s a lot of resources that need to be in place to help them in that community.

    [00:50:04] Every parent of a handicapped child or a child with some kind of challenge, is wondering in their head, what’s gonna happen when we’re gone? And then you have to make those kinds of legacy plans or those, you know, trust plans or whatever, so that you know that this person who might be relying on you for certain things is gonna be okay in your absence.

    [00:50:27] Carole Blueweiss: That’s a whole nother interview and it’s the first time it’s been brought up. That’s a great consideration that must be on the minds of every parent.

    [00:50:38] Julie Burch: I don’t think any parent ever stops being a parent in some way. Their kid, even when they grow up, even when their kid is an adult, and even when your relationship becomes symbiotic, you still are thinking of them as far as what are they doing? How are their needs going? Are they okay? And what’s gonna happen later?

    [00:51:04] Carole Blueweiss: Anything you’d like people to know?

    [00:51:06] Julie Burch: I am a mindfulness coach. I think that for parents of people who are disabled and for disabled individuals too, mindfulness practice is huge because it helps us become more resilient. It helps us deal with stress much more effectively. I have currently eight books out.

    [00:51:29] Carole Blueweiss: Wow.

    [00:51:29] Julie Burch: If you count the coloring book that I made, because I’m an artist and a writer. My author name is Juliet Brilee, B R I L E E, Juliet Brilee. I like to think that my books are inspiring. Joshua actually consults on my books. I will read him and he helps keep me in line with my characters.

    [00:51:48] I will check with him. I’ll say, is that realistic? Is that, you know, tell me, am I nailing that? My books, they’re available on Amazon as e-books or in print.

    [00:51:57] Carole Blueweiss: In braille as well?

    [00:51:59] Julie Burch: They are not.

    [00:52:01] Carole Blueweiss: How did Josh read them?

    [00:52:02] Julie Burch: I read them to him and actually we had a culture when he was growing up, a culture of me reading novels to Josh. So he got his book fill that way, too. After reading him my books, then I will revise accordingly.

    [00:52:17] Carole Blueweiss: Great collaboration.

    [00:52:20] Julie Burch: Yes, yes. And I thank him in the author’s note on most. And when I am wildly financially successful, perhaps I can hire him as well.

    [00:52:31] Carole Blueweiss: Perfect.

    [00:52:32] Julie Burch: Yeah.

    [00:52:33] Carole Blueweiss: Thank you so much, Julie, for being my guest on Wisdom Shared and sharing your story and all your wisdom. I look forward to speaking with Josh. You provided a very important view from your perspective as a stepmom. And I know I learned so much, so I know that it’ll be very, very eye opening and increase the empathy out there for people when they might see somebody who’s having challenges with their sight.

    [00:53:06] Julie Burch: Well, thank you for the opportunity to share some of this wisdom and some of my experiences. I think that anytime we become more conscious of other people and the challenges, our heart of compassion opens and we are richer because of it. So thanks for this opportunity. I think you’re doing a great work in the world. Thanks Carole.

    [00:53:27] Carole Blueweiss: Thanks Julie. To find Julie’s books, go to Julie’s author website at julietbrilee.com. That’s J U L I E T B R I L E E dot com. And for the links to Julie’s Facebook pages, newsletter, and email, please go to the show notes where you will find these other resources. In the next episode of Wisdom Shared, you will hear from Josh Burch, Julie’s stepson, who shares generously what it’s been like for him to live 48 years, his entire life, without vision and the social cues he’s had to learn in order to fit in.

    [00:54:13] Josh Burch: If you’ve never met a blind person, you meet a blind person that’s not facing you, doesn’t have good posture, they might say, gee, you know, I don’t wanna be around blind people. Or, you know, if you go for an interview, they’re like, I don’t wanna hire this blind guy. All blind people are like that. So posture and the way you look at people is very important.

    [00:54:37] Carole Blueweiss: After interviewing Josh, I gained a whole new perspective of what it’s like to be blind, how to approach someone I might see who was with a guide dog and so much more. Josh certainly increased my awareness in general about what it’s like to live in a world made by people with sight.

    [00:54:55] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

    [00:00:22] Carole: Welcome to Wisdom Shared, where parents are the experts and connection inspires change. My name is Carole Blueweiss, and today I have as my special guests Julie and Josh Burch. In the last episode, you heard Julie. And today you will hear from both Julie and Josh, as they speak together about what it was like to be brought up as a blind person, as a child, and then later what it was like to be an adult. I encourage you to listen first to Julie’s episode, if you haven’t already. And then come back to this episode.

    [00:01:04] Josh Burch is 48 years old, and he is blind. He lives independently with his yellow lab Lou. At birth, Josh was diagnosed with optic nerve hypoplasia or ONH. Now the optic nerves, they relay messages from our eyes to our brain to create visual images. And the more connections we have between the eye and the brain, the better our vision, but with ONH, you have far fewer connections. Thanks to today’s evolving technology, blind people are able to communicate with computers and even phones.

    [00:01:39] I own an iPhone. And there are features I didn’t even know existed before talking to Josh. For Josh, his phone is more literally an eye-phone in that it helps guide him in digital spaces, kind of like his dog Lou does in physical spaces. Josh’s talk about tech inspired me to look up the history of audio books. Did you know that audio books were originally made in 1934 for blind people only?

    [00:02:09] And it was actually illegal to buy these books on LPs, if you weren’t blind.

    [00:02:13] Scratchy old-timey audio, male voice: Instead of being able to work for their honest livelihood, are forced to employ all their time in strolling to beg sustenance for their helpless infants, or as they grow up, either turn thieves for want of work or leave their dear native country to fight for the –

    [00:02:28] Carole: Eventually, cassettes, CDs, and digital books were mass produced and of course the laws have changed, but this is one example of where technology created for people with a disability ended up benefiting everyone.

    [00:02:43] Julie told me she feared Josh thought she was mean, like an evil stepmother. On the other hand, Josh told me he was grateful that Julie created boundaries and structure.

    [00:02:53] I love how they inspired each other, learned from each other, were able to come back to each other in the present and reflect on their history and their current relationship. Now let’s listen to Julie introduce Josh.

    [00:03:11] Julie: Josh is my stepson. He is all grown up and living on his own and I am so proud of him and just all of the things he has accomplished and his can-do attitude that he leads with in life. Oh, by the way, he happens to be totally blind. It’s funny because when I think of Josh, obviously, that’s a characteristic, but that wasn’t the first thing I thought of.

    [00:03:37] Carole: I then asked Josh to introduce himself. Tell us, who is Josh?

    [00:03:41] Josh: I’m a 48-year-old, totally blind man, Joshua Burch. I’ve been blind since birth. My blindness was caused by a condition called optic nerve hypoplasia. The optic nerve connects from the brain to the eyes. It’s kinda like a wire to a fan. If the wire is severed, the fan doesn’t work.

    [00:04:02] My optic nerve never grew. That’s what caused my blindness. But I have never let it stop me from accomplishing what I want to accomplish. I can do just about anything that a sighted person can do, except drive a car.

    [00:04:17] Carole: What is something you experienced as a child that sticks with you today?

    [00:04:23] Josh: I know some people say that blind people don’t dream. Very, very untrue. Blind people do dream. We dream differently. Our dreams have a lot of dialogue and our dreams are also tactical. I can remember dreams from back when I was four years old, I had this dream about the sandspur that was the size of like a baseball. And it was rolling around on the floor. And I said, I don’t want to get run over by a sandspur ball.

    [00:04:56] I’ll never forget that dream. So the idea that blind people don’t dream is totally not true. We just dream differently. Our dreams don’t have sight. And I, and a lot of people say, well, do you see in your dream? I said, well, if I did, I wouldn’t know, because I’ve never seen before. So I wouldn’t know what it would be like to see, you know.

    [00:05:18] Carole: Do you have a feeling or a memory or an awareness that you thought differently than other sighted friends of yours?

    [00:05:28] Josh: Yes. I used to have a habit when I was a kid of rocking back and forth. I’d be sitting in a chair rocking and come to find out a lot of blind people do that. It feels good, you know, because sighted people, they can get up and look around at things. We can’t. When I was a kid, I was taught, hey, that’s not appropriate. We don’t do that. You know? So I still like to rock, you know, on a rocking chair and stuff, but I don’t rock back and forth in public like I used to, when I was a kid.

    [00:05:59] It is interesting the way, especially blind people, they perceive certain things and. A lot of us do, we do think differently than sighted people, especially people that have been born blind because we’ve never seen the world. So we don’t know how things look. You know, we only go by what someone describes to you.

    [00:06:16] Carole: Do you see colors? Do you see black and white?

    [00:06:19] Josh: As far as colors, I wouldn’t know if I saw colors, being never able to see. So I wouldn’t know. What I can see is light and dark. Cause there’s a light on, in the room, I can see it. I can see flashes of lightning. If a room is dark, I can see it. You know, sometimes if there’s something in front of me, I can tell if it’s real close because in front of my face, it gets kind of dark. That doesn’t happen all the time. It’s occasionally though, it will happen.

    [00:06:54] Carole: Do you have a memory of when you first realized you were different from your classmates?

    [00:06:58] Josh: When I was four years old, somebody told me that I was blind and I don’t remember who, but that was kind of when I found out what that meant and I started to learn what that meant.

    [00:07:09] Carole: Do you remember up til then feeling that you were just like everybody else, or did you have a sense that something was different or something was missing?

    [00:07:17] Josh: I felt like I was like everybody else.

    [00:07:19] Carole: Whether you have sight or don’t have sight, you’re still a child and there’s a lot going on in the background that all children are trying to figure out or feel they don’t really understand it logically. Right?

    [00:07:31] Josh: Luckily, as I got older, Julie explained everything to me and I owe Julie a lot, you know, because she’s been there.

    [00:07:38] Carole: Do you have a relationship with your mom?

    [00:07:40] Josh: Yes. My mother actually lives in the same complex I live in. She lives a few doors down from me. So it’s quite convenient.

    [00:07:49] Carole: Is there a difference between how your mom treated you and how Julie treated you?

    [00:07:55] Josh: I wasn’t taught as much by my mother as I was Julie. And I think it’s just because my mother was going through things. Julie was the one that when I moved in, taught me even though I’m blind, I can do things. She taught me a lot in my formative years, you know, she taught me how to wash my face and how to fold my wash cloths and put ’em on the side of the tub.

    [00:08:14] And, but yeah, they were both a little bit different. There’s a lot of blind people who don’t have very good social skills and don’t have very good manners because a lot of them were sheltered. Not all of them, but a lot of them have been and they get out in public and they don’t really know how to act. I always say, well, they’re that way because they didn’t have Julie Burch as a stepmother, you know?

    [00:08:37] Carole: One of the things Julie said was how she owes you so much. You were such a role model to her and you taught her so much. If it weren’t for you, maybe she wouldn’t be a writer right now and be doing a lot of the things that she’s doing. How does that make you feel?

    [00:08:52] Josh: That makes me feel great. You know, I’m glad that I could be such a inspiration in her life, you know? And she inspired me, you know? I mean, I don’t feel that I would be as independent as I am now, if it wasn’t for her, she let me experience life. I mean, we didn’t always, just like any kid and parent, you don’t always agree with everything, but I mean, she was a great teacher.

    [00:09:15] Julie: So he had two educated parents. The two of us were on top of what he needed and what he was getting educationally. And we were monitoring it closely. It was hard because his dad was going to school. I went for my master’s degree. One of us was always home at night and he had a brother as well. So it was challenging to balance it all. And it was hard doing his homework with him. It took a lot of time and it was difficult to keep up with it.

    [00:09:45] Carole: I heard some clicking in the background.

    [00:09:47] Josh: That’s my dog. I use a cane and I use a guide dog. My guide dog’s name is Lou. He’s a yellow lab. I use him to go most places.

    [00:09:57] Carole: I wondered what these walks were like with Lou. So I asked Josh if he could record himself walking his dog so that we could eavesdrop.

    [00:10:05] Josh: I just took him to go potty. Or as they say busy. You want the dog to go potty, you tell him busy, busy. But anyway, we busy, busied, and Lou, forward. Good boy. Okay, I’m working him right now. Got his harness. I’m working him.

    [00:10:26] He’s being good. [Sounds of walking through crunching leaves.]

    [00:10:32] Good boy. Come on. Let’s go. Let’s go. Good boy. Good boy.

    [00:10:48] Come on.

    [00:10:54] Come on, forward. Forward, forward. Left, left. Left, left. Find door in. Find door in. Okay, you give him when you want the dog to find something, you tell him left, left and find the door, find door in. So, okay. Now I’m at the door. I’m using my key fob to open this automatic door. Okay, now I’m in. Okay. Now, right, right. Find the elevator, find the elevator, find the elevator. Okay.

    [00:11:37] A lot of people think guide dogs are supposed to be well-behaved, which they are. A lot of training goes into guide dogs, but they’re still dogs. You can’t totally take that away from them. They still do doggie things. Sometimes, I don’t take him to restaurants because he doesn’t always behave himself at restaurants. And he’ll try to get food off the table, which when he does that, I have to correct him.

    [00:12:04] Carole: How many guide dogs have you had in your life?

    [00:12:06] Josh: This is my third. I was 21, going on 22, when I got my first guide dog. It was from Guiding Eyes for the Blind back in 1995.

    [00:12:14] Carole: And why so late in life?

    [00:12:16] Josh: Well, you have to be at least 18 years old to get a guide dog.

    [00:12:19] Carole: What was his name?

    [00:12:21] Josh: His name was Pierce. Pierce was a great dog, a black lab. It was interesting because we got our dogs and you used to spend four weeks at the school, basically getting acquainted with your dog. They take you everywhere. Especially in New York, they took us to train stations. We had to work our dogs on the subway. We had to work our dogs through downtown Manhattan, which looking back on it, I don’t know how I did it. My problem is I wasn’t really ready for a guide dog. As they call it, O and M, which stands for orientation and mobility, wasn’t the greatest. You know, there were certain aspects of getting around I wasn’t real good at. Having Pierce was not really a help at the time. It was very difficult, but I decided to give him back and I went, let me think, 15 years before I got another dog. Cause at first for a long time, I thought I’ll never get another dog.

    [00:13:14] Then I thought, you know what? Let’s try it, and see how I do. I’m older, I’m more mature. I’d applied at a place called Hoveround, this power wheelchair company. I had the interview and I got hired. I thought, well, I better put this getting the dog, on hold. I started in September 2011. In April of 2012, I was approached by the CEO of Hoveround, Tom Kruse.

    [00:13:40] And he said to me, hey Josh, have you ever thought about getting a guide dog? I said, well, I had one years ago. I wanted to try to get one, but I said, then I got hired. He goes, what if we pay you time off for you to go get your dog? I said, you’re kidding me, right? He said, no. So I called the school. I said, you know, they’re gonna pay me time off for me to go get my dog. I went up there and I got my second dog, Wayne.

    [00:14:06] Carole: What is it like to have a guide dog versus a regular dog?

    [00:14:10] Josh: A guide dog wears a harness at leash. When that harness is on, they’re not supposed to be petted by anybody other than me, of course. People are not even supposed to talk to it and pet it, but you’d be very surprised. A lot of people will try to. I’ve went to a church where I’d go into the bathroom with my dog and washed my hands and this guy would keep petting my dog. And I mean, I had to say to him many times, hey, sir, please, he’s working, please don’t pet him. I mean, and I had a sign on him, says, don’t pet me, I’m a working dog.

    [00:14:38] Now, I mean, a lot of people, they respect that, but there’s a lot of people that don’t, they’ll still try to pet your dog and try to talk to your dog, which is very bad, you know? Cause a lot of people don’t understand if you do that, that can distract the dog. And I explained it to somebody. I said, you know what, if I was crossing the street, you start saying hello to my dog, I could get hit because he could get distracted. And they said, you know, I never thought about that. Now once the harness is off, they’re a regular pet. You know, they can be played with, you can play with ’em, pet ’em. Having a guide dog is a great thing. I mean, I love it. My speed is a lot faster than with a cane, cuz with a cane, you’re tapping your cane on the floor and you’re hitting everything with a cane.

    [00:15:22] It makes you slower. But with a guide dog, I just, zoom, I move fast. The thing is about a guide dog, it’s not for everybody. Because while it is a good thing, it’s a lot of responsibility. You have to be very responsible to have a guide dog. It’s a lot of work. Basically, you’re taking that dog everywhere that you go.

    [00:15:42] And when you go on vacation, you gotta pack things for your dog. You gotta pack food, you gotta pack everything. You also, they can be very expensive. My dog, he’s prone to ear infections. So I take him to the vet and they go, oh, this would be this amount of money. I’m like, oh my gosh. So it’s very expensive.

    [00:16:04] Carole: Lou is the dog you have now, right?

    [00:16:06] Josh: Yes. He’s a 70 pound yellow lab. He’s a very sweet dog. He’s a bit rambunctious. He’s…a lot of people say, oh, he’s very well behaved. Well, I say to them well, yeah. Don’t see him out of harness cuz I have to watch him because he’s still a big puppy. He’ll get into everything.

    [00:16:27] Carole: What has been your experience and your opinions about accessibility for a disability like yours?

    [00:16:32] Josh: Well, as far as accessibility goes, in some ways, we have really improved because now blind people have a lot more devices than they used to. Like when I was going to school, we didn’t have the iPhone. Braille basically is six characters, but there’s different combinations for a different letter. And also braille has a lot of abbreviations. So I remember many times carrying a braille writer from class to class and you got a good workout, cause they’re not light. They’re very heavy and they’re loud. Clunk, clunk, clunk, you’re typing on it. [Sounds of braille writer] I remember many nights doing my homework and clunking on that braille writer.

    [00:17:12] Carole: How do you feel those teeny little teeny weeny dots of braille? I see it in the elevators and I put my finger on it and it means nothing to me.

    [00:17:22] Josh: All braille is is six dots, but different combinations of dots represent different letters. Like one dot is A, two dots is B. B is like two dots going up and down, C is two dots going side to side. And then, but then braille also has a lot of abbreviations that print doesn’t have. It can hurt you in a way, having all these abbreviations in braille. If you’ve used abbreviations in braille all your life, you don’t know how to spell very many words.

    [00:17:51] So it’s very important to teach children okay, it’s good to know the abbreviations, but you also need to know how to spell it out. Unfortunately, with spell check that can kind of hurt us because I mean you, oh, how do you spell? Look at spell check. You don’t really know how to spell, you know, you’re asking spell check to look it up.

    [00:18:09] Carole: Right. And some people would say like, and especially kids, like what’s the point? We have computers that spell check.

    [00:18:14] Josh: I know. Computers are great, but I think in some ways, it’s kind of hurt us because it doesn’t encourage us necessarily to use our minds. You get computers doing everything for you. It’s like little kid’s toys. You got toys now that do everything. Kids don’t have to use their imagination. I mean, when I was a kid, we got toy trucks. I mean, we loved it. You know, we’d play with our trucks. We could use our imagination.

    [00:18:37] Carole: I have an elderly mom and she has difficulty with her hands and also difficulty hearing. And oftentimes, I try to show her that she can just press the record button and send a message on text or WhatsApp. And that’s just a great feature, right? So my question to you is why would you choose to type when you could just record?

    [00:18:59] Josh: Well, a lot of times I do actually use my voice when I send texts, but the problem is voice dictation does not always work really well. You know, you’d be amazed at what weird things will come out when you try to send voice dictations. Like what? It depends. You know, sometimes it works good. Sometimes it doesn’t. At least with typing it out manually, you know most of the time that you’re gonna get everything right. I use both.

    [00:19:25] Carole: And then when you type, and then there’s, you have a spelling error, does the computer tells you there’s an error?

    [00:19:29] Josh: Yes, my phone will. And, but then sometimes there’s words that your phone doesn’t recognize.

    [00:19:34] Carole: Another good reason to know how to spell.

    [00:19:36] Josh: Yeah, absolutely. Basically what I have is the iPhone. People have asked me, how do you get a phone like that? And I said, well –

    [00:19:46] iPhone voice: Screen dim.

    [00:19:47] Josh: It’s actually, okay, it just said screen dim. Cuz you know, the screen will lock if you don’t do anything. Basically what I tell people is that it’s any iPhone, there’s a function on them called voiceover. And all you have to do is turn voiceover on and there you go. It works for the blind. It’s great. I love my iPhone.

    [00:20:10] iPhone voice: One notification.

    [00:20:11] Josh: Okay, I just got a notification. It just notified me. Siri, what time is it?

    [00:20:16] iPhone voice: It’s 9:35 AM.

    [00:20:18] Josh: Here’s how I play music. Play all songs.

    [00:20:24] iPhone voice: Playing all songs, shuffled. [music plays]

    [00:20:27] Carole: That’s great. What is that song? I like that.

    [00:20:29] Josh: It is…let me see, who is that? Name that tune.

    [00:20:37] iPhone voice: This is Cuckoo (Reprise) by Ramblin’ Jack Elliott.

    [00:20:42] Josh: Let me open my emails. Okay, I have email the bottom of my screen.

    [00:20:49] iPhone voice: Mail, 42 unread emails.

    [00:20:51] Josh: Okay, I have 42 unread emails. I’m gonna open. I’m gonna double tap on emails.

    [00:20:57] iPhone voice: Doubletap to open. Mail, mailboxes, back button.

    [00:21:01] Josh: Okay, I’m in email. And –

    [00:21:04] iPhone voice: Messages, unread, Teleflora

    [00:21:08] Josh: Let’s see, I have an unread email from Teleflora, so I’m gonna delete this email. So what I do is, I take my finger and I slide up.

    [00:21:19] iPhone voice: Delete.

    [00:21:19] Josh: Delete, and double tap.

    [00:21:22] iPhone voice: Deleted.

    [00:21:23] Josh: And it’s gone.

    [00:21:24] Carole: And how do you know where to put your finger?

    [00:21:28] Josh: Basically the phone will tell you that. As long as you have your voiceover completely enabled, the phone will tell you everything that your finger is touching. So you know where you are on your phone. I check to see how much battery life I have.

    [00:21:45] iPhone voice: 77% battery power, not charging.

    [00:21:48] Carole: Where did you put your finger?

    [00:21:50] Josh: I put my finger on the top right part of my phone.

    [00:21:56] Carole: And it didn’t have to be exact, I assume.

    [00:21:58] Josh: No.

    [00:21:58] Carole: All this time you were using Siri, right? Not Alexa.

    [00:22:00] Josh: Yes, right. Now, I do have an Echo Dot. So I use that, I’m quite spoiled by that. I use that for quite a few things. Okay.

    [00:22:11] iPhone voice: Secure text field.

    [00:22:13] Carole: So did you just, you know, like any kid would do, get an iPhone and just intuitively you just know where those buttons are, how to use an iPhone without being able to see?

    [00:22:22] Josh: I learned from several different resources and part of it’s by playing with it. Another way I’ve learned is by other people that are blind, asking questions and also going online and researching, how do you do this? Or I also went to the Rehabilitation Center for the Blind in Daytona Beach, Florida. And they also taught me how to do certain things on my phone. It’s made technology more important than ever because there’s a lot of companies that that’s the only way they communicate with you is through technology.

    [00:22:54] Carole: What is it like to find a job?

    [00:22:56] Josh: Finding a job for blind people is a little bit easier than it used to be because there’s a lot of websites you can go on to find a job. You can send your resumes to these companies. Unfortunately, there’s a 75% unemployment rate, I believe, with blind people. A lot of companies don’t want to hire blind people. They don’t want to take the extra steps to hire them because their equipment would have to be accessible. For example, I have a program on my computer called JAWS, which stands for job access with speech. It’s a screen reading program.

    [00:23:28] It reads to you everything that’s on the screen. A lot of these companies, everything’s done on the computer, so they have to be able to make their computers accessible. The companies don’t necessarily have to pay for it. We have an agency called Division of Blind Services that will fund that if you get a job and, you know, the computers need to be made accessible, they’ll work to get it done for you.

    [00:24:02] Carole: Bullying is all too common for many school kids. Josh unfortunately got his share, but in ways you may not expect. I wonder if Julie’s aware of something that you mentioned in your interview. I asked you about being bullied and you said actually in your public school, no, but in the school for the blind, you were bullied.

    [00:24:25] Josh: Yes.

    [00:24:25] Carole: Much more.

    [00:24:27] Josh: A lot more at the school for the blind than I was in public school.

    [00:24:30] Carole: Julie, do you remember that? What that was like?

    [00:24:35] Julie: He didn’t talk a lot about it when it was going on. It struck me that there’s a pecking order among blind people. I can remember seeing them crowded around a television set and Josh was off on the sidelines. And I can remember dropping in unexpectedly, which we did on purpose to see what’s actually going on here. And not being real impressed.

    [00:25:06] Carole: Josh, do you remember what the bullying was about?

    [00:25:08] Josh: The bullying mostly was I wasn’t as athletic as some of the kids were. I was a little bit slower than some of the other kids were.

    [00:25:17] Julie: What did they do specifically?

    [00:25:19] Josh: Oh, the first week at Florida School for the Deaf and Blind was just awful. Because I didn’t really know my way around and they just expected you to learn it right away. Kids would make fun of me because I was always late for class the first week. They’d make fun of my name, these kids that would go La Burch dun, dun, dun, La Burch, you know, and I hated that as a kid. You know, but I could now look back at it and kinda laugh. I’ve had some kids that hit me at the school for the blind. I think some of them called me stupid.

    [00:25:50] Julie: Well, he was only there one year. We pulled him out of there.

    [00:25:53] Josh: Yeah.

    [00:25:55] Julie: A lot of people thought it would be a panacea. They thought you got a blind kid, put him in a school for the blind. You have a blind kid, give him a dog. Like these things are gonna solve all the problems and make everything okay.

    [00:26:08] Josh: I’m not saying I was never bullied at public school, but I felt in public school, kids wanted to help me more. They were more eager to help, but but at the school for the blind, blind people are our worst critics because we want everybody to be alike and I was kind of slow. I was not real athletic. I wasn’t the smartest kid. And so I got picked on mercilessly at the school for the blind. Some of the kids in public school would argue about who was gonna help, who was gonna guide me. And I remember some of the kids getting mad at me because I’d choose one over the other to guide me.

    [00:26:45] And, you know, it was like, this is neat. They’re more willing to help. And that was a good experience in public school. I had sighted friends. I joked around just like every other kid. I had fun. I had a sense of humor, just you know, just like everybody else did. So it was, it was a great experience. It taught me how live in the sighted world.

    [00:27:06] Carole: What hurt you the most when you grew up? Or not even, like something that sort of blocked you from doing what you wanted to do?

    [00:27:14] Josh: Well, when I was in school, I had a vision resource teacher who meant very well, but the problem is she didn’t want to see her students fail. When I used to take tests, she’d try to spoonfeed me the answers to the test. So I was getting all good grades because I didn’t have to study, you know. I mean, heck, she was gonna give me the answers and, and I mean, she meant well, you know. But my dad and Julie basically had a meeting and told her, you need to back off. He’s not learning. Well, she did back off and needless to say, my grades showed because I didn’t study like I should have. I didn’t do as well. And unfortunately, due to that, I did not have very good study skills. So I would say that was one thing that did not help me in school.

    [00:28:08] Carole: Do you have advice to teachers or if you had a bunch of people in front of you and you were gonna give advice to them so that they could serve other people in your situation better, what would you say?

    [00:28:21] Josh: What I would say to teachers is we’re just like sighted people. We just need more assistance. But the best way to assist us is teach us how to study. Not knowing how to study can really hurt you. And also let them know that, you know, we do need help, but we will let you know when we need help and what kind of help we need.

    [00:28:47] Carole: What about to other parents of children who are blind?

    [00:28:53] Josh: Your child is just like everybody else. The only difference is they can’t see. Get into support groups. There are a lot more support groups for blind people than there were when I was growing up. There’s a lot of what they call lighthouses for the blind, which have a lot of resources. Get involved with the lighthouses, find any support groups you can. And don’t shelter your blind child, because sheltering them will hurt them in the end. Encourage them to be as independent as they can. Let them know that, okay, you may be blind, but you’re no different from any other child.

    [00:29:36] Carole: Do you have a sense that the tendency is to coddle?

    [00:29:40] Josh: Yes. I have seen a lot of situations where the parents coddle the child. They do everything for them. They make their bed, they cook their food. And these children become adults and get out on their own and they don’t know how to function. And some of them might end up going into group homes because they don’t learn how to do anything. Now, I will say that the schools for the blind do encourage kids to be independent. And so do rehabilitation centers for the blind.

    [00:30:04] That’s where blind people that are adults go. But the thing is they have to be able to go home and transfer that. It’s very sad. I’ve seen some of these blind people go to group homes or nursing homes at very young ages. It doesn’t have to be that way. Nursing homes are not for blind people. Nursing homes are for people that physically can’t take care of themselves. We can, you know, we just have to have the proper training how to do it. There’s a lot more resources out there than when I was growing up.

    [00:30:37] Carole: It’s not often I hear of the great strides society has taken to help the world become more accessible. And it is refreshing to hear Josh speak about the changes that have taken place over time that have been very helpful, but I still wanted to know what makes him angry. What pisses you off?

    [00:31:00] Josh: People that are ignorant and choose to be ignorant. It’s one thing when somebody doesn’t understand about blindness. I feel that instead of getting angry with them, it’s our job to explain to them what we need and what we don’t. What makes me angry is when people don’t understand and don’t want to understand. You have what’s called the backseat driver. You’re going somewhere and you know where you’re walking and they’ll, someone will say, oh, turn left. You know? And it it’s kinda like, okay, where do you draw the line? Cuz you say, okay, I got it. And they’re insistent, you almost have to be, I got it! Then they’ll say, I’m only trying to help you. It’s like, okay, if I need help, then help me. You know, I’ll ask you for help if I need it.

    [00:31:51] Carole: Somebody is with you and they may not know much about being blind and maybe you’re the first friend or the first experience. They’re uncomfortable. And you’re clearly a very sensitive person yourself and you get it, that they might not understand. What advice would you have to people that don’t know what to do when they’re around you?

    [00:32:09] Josh: Ask us. Ask a lot of questions, you know, there’s no such thing as a dumb question. The only dumb question is one that hasn’t been answered. Ask us as many questions as you want, and we’ll answer you. We’ll let you know what we need and what we can do and what we can’t do.

    [00:32:25] Carole: So if I was with you, I would ask you, I have this desire to help you. Is that something you want? Or you want me to shut up? Because you know how to do it and then let you answer that.

    [00:32:36] Josh: Well, if I knew, if I know where I’m going, I would say, okay, you know, I appreciate that, but I do know where I’m going and I’ll show you. Sometimes we do get lost, you know, because I mean, sometimes you, you’re not thinking. Oh, where are you trying to go? It’s nice, but I’m thinking, okay, let me figure it out. Okay, I realize I made a wrong turn. I’ll figure it out. And if I need your help, I’ll ask. I have ADD. So sometimes the concentrating can be hard. So I do get turned around and it’s embarrassing. Where are you trying to go? Is like, well, I was like, okay, I’m already embarrassed. Cuz I got turned around and I’ll say, well, I’m trying to go this way, but I got it. You know, I be as polite as I can.

    [00:33:16] Carole: I have some for sure directional challenges and I can see. But I get turned around all the time and I get made fun of by my family. Different people have different opinions about labels. How do you feel about the label of you are a blind person?

    [00:33:35] Josh: It doesn’t bother me. It’s who I am, you know? Okay, I’m blind, yeah. That’s okay. You know, I don’t mind that.

    [00:33:44] Carole: Do you feel like your senses, your other senses are stronger because you can’t see?

    [00:33:52] Josh: I wouldn’t say that my senses are stronger because I can’t see. What I would say is we have to rely on our senses more. I wouldn’t say my hearing’s better than anybody. Well, I’m actually a bit hard of hearing. But we have to rely on our other senses more than a sighted person. We have to listen more than a sighted person.

    [00:34:17] Carole: And what about touch?

    [00:34:20] Josh: Our sense of touch, we have to use that a lot. You know, we have to feel around, we have to feel, we have to use our cane.

    [00:34:28] Carole: What about your balance and your posture, your ideas about that?

    [00:34:34] Josh: Well, good posture is a good thing to have. And I remember Julie said to me, you have really good posture. And I said, well, because you were a good teacher. I used to slouch when I was a kid and they’d say, sit up, sit up.

    [00:34:48] Carole: There’s so much information I assume that we get socially with our posture and with our self image when we see other people how they are. And that’s a comparison for us. But if you don’t have that comparison, you’re just your own little world in that sense.

    [00:35:02] Josh: Yeah exactly. I was also taught when somebody is talking, you look at them, you make sure you’re facing them. And I learned that from Julie when I went to the rehab center for the blind. You sit facing somebody.

    [00:35:16] Carole: So can you imagine if they hadn’t told you that, could you just as easily talk to somebody and have your back to them? Because why not? What’s the difference?

    [00:35:24] Josh: Yeah, if I didn’t know any different. Yeah. And I can’t imagine where I’d be now. Probably not very successful because there’d be people that said, gee, you know, something’s wrong with this guy. He doesn’t face me. And that’s one thing Julie instilled into me. She goes, you know, you gotta make sure you’re facing people and your posture is good. And your hygiene is good because people that don’t know blind people will think all blind people act that way. Or, you know, if you go for an interview, they’re like, I don’t wanna hire this blind guy. The way you look at people is very important.

    [00:35:58] Carole: And how were you able to feel your body? Do you do any kind of physical exercise?

    [00:36:04] Josh: Yes. I was going to the gym with my dad and Julie before the pandemic. My dad would adjust the weights when I would lift weights or do a lot of cardio. I also have an exercise bike at home that I ride. And then Julie and I, what we started doing during the pandemic is exercising over the phone. She’d call me and, you know, she had me do some exercises. When I was with her, she’d show me how to do it. And then we’d exercise together. And she said it actually helped her exercise.

    [00:36:35] So I try to stay very active. I think that’s very important whether you’re blind or not, being active. Especially among the blind community, because a lot of blind people are not active. A lot of blind people are overweight. Very important for your physical and your mental health.

    [00:36:53] Carole: Julie happened to mention that you love music. Do you want to tell us a little bit about how music has played a part in your life?

    [00:37:01] Josh: Oh yes. Well, basically we call the radio blind person’s TV because we listen to the radio, I think, more than the average sighted person. I was introduced to music at a very young age because when I was really little living with my mom and Steve, my mother always had the radio on.

    [00:37:20] So, I heard a lot of music growing up. And then when I moved in with my dad and Julie, they listened to a lot of music. They listened to a lot of tapes in the car. My dad had a lot of records. I’ve been to concerts and I really have a love for music. I love listening to music. I love listening to radio shows.

    [00:37:45] Carole: You have a great voice. Did you ever think about having a career in radio?

    [00:37:49] Josh: I’ve done a few radio shows. I was on a couple of internet radio stations for a brief time and I loved it. I played music, I talked about music, I shared my knowledge of music.

    [00:38:01] Carole: What’s your favorite kind of music?

    [00:38:04] Josh: I like classic rock and oldies. My favorite group is the Beatles. I love the Beatles. My favorite is Paul.

    [00:38:11] Carole: Paul. And what’s your favorite song?

    [00:38:14] Josh: I am the Walrus. [singing: am the egg man. They are the egg man. I am the walrus cuckoo cachoo] I like that. Just all the strange things he says, you know, sitting, sitting on a corn flake, waiting for the van to come. Which to a kid, I think I was like seven the first time I heard it, like, okay, [laughs] what’s that supposed to mean?

    [00:38:43] Carole: Music and emotions bring up questions and uncertainty. Sometimes it’s not so clear what something is supposed to mean, or there’s no real predicting what’s gonna happen. They’re not linear or straightforward and feelings from actual new experiences sometimes can be complex and unclear.

    [00:39:02] Julie believed that exposing Josh to unfamiliar experiences was a way for Josh to learn not to be afraid to try new things. Sometimes in order to overcome an obstacle, one has to face it straight on. I think of patients that have a condition where they feel dizzy. The cure may very well make the dizziness worse at first. And then eventually it goes away.

    [00:39:27] Taking Josh to amusement parks and camping may have initially made Josh feel anxiety, but from that feeling, he was able to learn valuable skills.

    [00:39:37] Julie: I remember, gosh, Thunder Mountain Railroad and other rides like that. And the whole time in line, he’d be repeating the same question. What’s it gonna be? Is it gonna be scary? What’s it gonna be? So the same kind of repetitious questioning that we really had to learn patience to deal with. The funny thing was, he would do that the entire time in line, and then we’d go on the ride. And then immediately when we were off the ride, he’d like, can we do it again? So that was reassuring. And I learned that that continual questioning was a sign of his anxiety and it didn’t necessarily mean that things were not going well. I learned that over time.

    [00:40:26] Carole: Do you feel like now with more words at your disposal, that what Julie said about anxiety?

    [00:40:31] Josh: Julie hit it, hit the nail right on the head. It was anxiety. Absolutely.

    [00:40:36] Carole: Did that feeling pervade your childhood?

    [00:40:41] Josh: At times, yes, it did. You know, being totally blind and sometimes not understanding certain things. It made me anxious. Saying I can remember going on Thunder Mountain and something I didn’t tell Julie till later is when I was a kid, I used to go to the camp for the blind. Well, my first year at camp, they took me to Circus World, which used to be an amusement park. It’s not anymore. And they put me on a roller coaster. And never told me what it did. So.

    [00:41:09] Carole: Oh my gosh.

    [00:41:11] Josh: Yeah. I’d heard Thunder Mountain was a roller coaster, but thanks to Julie and my dad, they got me into liking roller coasters, you know, cause they had me get on Thunder Mountain and I’m glad they did. Cause I loved it.

    [00:41:23] Julie: Well, we rode with you, too. It wasn’t like we just put you on it.

    [00:41:27] Josh: Right. And you told me everything the ride did. So it’s like, oh, okay, you know.

    [00:41:32] Julie: I did not know that happened to you at camp.

    [00:41:34] Josh: Yeah.

    [00:41:35] Julie: I think when you can’t see your environment, you really don’t have a sense of where you are except for landmarks that you’re touching or sounds that you’re hearing. And when he was really little, we were taking him out of his safe, familiar place, and we were bringing him into our place. Or often we took him camping. So we were giving him new experiences and it was not his safe, familiar place. So naturally that is going to be challenging, especially until he has the level of trust with us that he had with the people who he was most familiar with, his biological mother and her boyfriend.

    [00:42:25] Carole: Josh told me that it was so helpful that you treated him like a sighted person. And you knew that it was in his best interest for you not to do everything for him and to help him learn how to fend for himself, so to speak. How does a 21 year old know that?

    [00:42:46] Julie: I think that some of that came from my own background, just because in my family of origin, I was like the little parent who helped raise my brother and sister. There was some of that at work. And I happened to be going to college to be an elementary school teacher. A lot of that was really helpful when suddenly I have these two elementary school age children in my lap.

    [00:43:13] Well, thank goodness I had a lot of educational resources. I just couldn’t imagine him living a life where he couldn’t be as independent as possible. It felt like a mission, actually. Felt like almost an assignment from the universe to do my very best for these kids who were somehow delivered to me on my path of life.

    [00:43:46] So I read voraciously. Started taking braille classes. I would be lying if I didn’t say there was a little bit of the Annie Sullivan complex at work there, as she was the teacher of Helen Keller. And I’m like, well, you know, I can help this kid do what he needs to do.

    [00:44:11] Carole: Interesting. Did you read her books for some guidance?

    [00:44:15] Julie: Well, I had read those books. I was always a voracious reader. I have this boy in my path who clearly needed some assistance and needed some direction. And I think one thing that made it beneficial was that because I was not biologically related to Josh, and maybe because of my own background, because I had my own challenges as a teen and had to work hard to be independent, I didn’t get caught up in awfulizing or self blame or ‘these poor kids.’ I saw some of his relatives seem to get caught up in sympathy and their hearts were like breaking for him. And I thought, well, right, that attitude isn’t helping him. What attitude would help Josh? What would be a helpful attitude? The way I saw it, the most helpful thing for him would be to love him, but to be a little tough with that love and say, okay, at whatever you’re capable of doing, you’re gonna do that.

    [00:45:35] And I’m not gonna do it for you. And so I can remember, he was just like, I don’t know, so little and I’d say, okay, we’re at the door, find the doorknob and open it yourself and I’d stand behind him while he found the door knob and opened it. And I remember thinking this is taking a long time. [laughs] And I obviously, I would, God put me here to learn patience.

    [00:46:03] Carole: Josh, I have a few questions here. First of all, if you have a memory of feeling that tough love and how that felt to you, if it even felt that way? And also if you felt a difference between those people that had so much sympathy for you, how did it make you feel?

    [00:46:19] Josh: Well, when I was in school, I used to tell the kids that I had to clean my room and they’d say, you have to clean your own room? Wow, your parents are mean. I’m just like everybody else, but yeah, I, you know, I felt the tough love, you know, that I was made to do things that I didn’t always want to do, but I had to do it, you know, and now I see some blind people out there in the world today that are very sheltered, that don’t know how to do hardly anything.

    [00:46:49] And I’m just very lucky that Julie gave me that tough love. And basically showed me, hey, you can do anything and you’re going to do it. Not just that I can do it, but I’m going to.

    [00:47:01] Carole: Did you notice if people were treating you more with sympathy than as an equal?

    [00:47:09] Josh: Yeah, I think there are some people that did treat me more with sympathy, because they wanted to do everything for me. I don’t remember a specific incident, but I can remember they would be doing things and Julie’s like, no, no, no, no, no. He can do it. And she’d say to me, Josh, you can do it. Don’t let them do things for you like that.

    [00:47:29] Julie: We never really know what another person’s going through, how another person’s perceiving a thing, whether they’re sighted or not. We aren’t in their skin. It surprises me sometimes how different our point of view is on things that have happened in the past. And in the effort to give Joshua a wide range of experiences and to open up his world, we pushed him pretty hard. And there were times when we pushed him and we thought we were pushing him into fun. And I think we were pushing him into things he did not enjoy very much. Although I’m thinking in particular of that one hike, right Josh?

    [00:48:10] Josh: Oh, yes.

    [00:48:11] Julie: Where we had to like climb up those slanted rocks and things.

    [00:48:14] Josh: Oh yeah.

    [00:48:15] Julie: Larry and I are each holding one of his hands and helping him up this incline. And he was like terrified. And we’re thinking, this is fun. This is exhilarating.

    [00:48:26] Josh: [laughs]

    [00:48:27] Julie: And then, you know, pushing you to learn instruments and be a musician because there’s a stereotype around blind people that that’s what they should do, right? So trying to at least open his world to that, even though it’s not something he really wanted to do. And, I mean, he still could do it if he wanted to, but it’s just letting it be okay because letting Josh be Josh, right? Letting you do you, right?

    [00:48:54] Josh: Exactly, yeah.

    [00:48:55] Julie: Whatever form that is gonna take.

    [00:48:59] Carole: Sounds like there was a great balance, you know, in general of the step-mothering, the parenting, of you can do this and that this is what we want you to be, which is independent and your own person. And then the balance of you are who you are and we don’t wanna make you who we want you to be.

    [00:49:23] Josh: Right.

    [00:49:24] Julie: That’s probably a balance that all parents are struggling with, right?

    [00:49:28] Carole: Yeah, of course. Yeah. Yeah. It’s hard. I see it now with my 18 year old, going off to college and making his own decisions.

    [00:49:36] Julie: Making his own mistakes.

    [00:49:37] Carole: Making his own mistakes. Exactly.

    [00:49:40] Julie: Yeah.

    [00:49:42] Josh: Yeah. You know, dad and Julie, our relationship has changed over the past few years. It’s become, I mean, it is gone from mother father, you know, guidance relationship to, I mean, they still give me advice and guidance, but it’s become more like we’re friends. We can sit and talk as adults.

    [00:50:02] My dad and I, we go walking once a week. We have adult time. We talk about adult things. It’s kind of interesting what the relationship has turned into. It’s just like three adults sitting around talking, you know. It’s really, really neat.

    [00:50:17] Carole: I wanna give you the opportunity to say anything you still wanna say.

    [00:50:20] Josh: I think this has been a great interview. It’d be a great education for people who don’t know a lot about blind people. This will teach people that blind people are just like everybody else. We just can’t see. And we can’t drive a car, but we have the same feelings everybody else does. You know, you can do anything you put your mind to, you just have to stay motivated and stay focused on your goal. And life is what you make of it.

    [00:50:49] Julie: Love your philosophy, Josh. I love it. Thank you, Carole, for doing this interview and giving us an opportunity to share our experiences.

    [00:50:59] Carole: Thank you for sharing. Hearing your story is a great way to learn that everyone is more the same than different, right?

    [00:51:07] Josh: Right.

    [00:51:09] Julie: That’s a good thing to take into the closing. Everyone is more the same than different.

    [00:51:14] Josh: Yes.

    [00:51:15] Carole: Well, take care.

    [00:51:16] Julie: Thank you, Carole.

    [00:51:17] Josh: Thank you, Carole.

    [00:51:18] Carole: Bye-bye.

    [00:51:19] Josh: Bye.

    [00:51:30] Carole: So much to think about after listening to Julie and Josh. I wanna reflect back on what Josh said about himself, that he wasn’t the brightest kid. Julie said that it wasn’t his fault that he hated doing homework. It was tied to his initiative being conditioned out of him. And I found that really interesting.

    [00:51:51] I think that can happen to any child. If people are always doing things for you all the time, you’re gonna lose your initiative. It’s like a muscle. How much to help our children and how much to let them fail and figure things out for themselves is a great conundrum. And it goes for academics and for literally falling and getting up on your own.

    [00:52:18] I know that I struggled knowing for sure how much help to give my son and when to back off. Julie said this is a universal challenge for all of us parents, making the point one last time that we are all more alike than different whether we have a child with a disability or not.

    [00:52:35] Be sure to look at the show notes for resources and for Julie and Josh’s social media information. Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

 
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Carole Blueweiss

Carole Blueweiss teaches organizations and students how everyday activities impact self-image, confidence, and performance. She is a Doctor of Physical Therapy & Feldenkrais practitioner whose TEDx talk has been viewed 250,000 times.

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