This is a replay of a previously released episode, for Blindness Awareness Month.
EPISODE SUMMARY
This is a replay of a previously released episode, for Blindness Awareness Month. In this episode, we meet Josh Burch, a 48-year-old man who was born with Optic Nerve Hypoplasia. Josh talks about the challenges of growing up blind and shares how he navigates a world built for sighted people with the help of technology and his guide dog, Lou. We also hear more from Josh's stepmother, Julie Burch, and learn how they inspired and learned from each other, and how their relationship has changed over time.
Some learning gems from this episode: Don't pet a guide dog, (he or she needs to focus on guiding). Once out of harness, you can pet the dog; iPhones have an option called "VoiceOver" which anyone can use; If you meet a blind person, don't assume they need help, ask first; Do not spoon-feed or coddle people who are blind, they are like sighted people and just need more assistance; Support groups are great like Lighthouses for the Blind; Encourage independence and build confidence; Good manners, awareness of posture and exercise matters; Tough love sometimes requires patience but it beats sympathy.
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=SIy4DpLWE94
RESOURCES:
PEOPLE MENTIONED:
FIND AND FOLLOW JOSH:
FIND AND FOLLOW JULIE:
[00:00:00] Josh: 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 tried to spoonfeed me the answers to the tests. So my dad and Julie basically had a meeting and tell her, you need to back off. He's not learning.
[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.