Ever thought about getting a guide dog? Listen in as we chat with members Jeff Flodin and Ed McDaniel about their experiences with guide dogs and some common misperceptions.
Hadley
Guide Dogs and Vision Loss
Presented by Ricky Enger
Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger, inviting you to sit back, relax, and enjoy a conversation with the experts. In this episode, Ed McDaniel and Jeff Flodin join us to discuss guide dogs. Welcome to the show, both of you.
Jeff Flodin: Thank you Ricky. Hi Ed.
Ed McDaniel: Thank you.
Ricky Enger: So delighted to have you and you both have appeared on Hadley properties on various topics here and there. For those who don't know you, why don't we just get a couple of introductions out of the way? So tell us a bit about yourself and then of course the reason that we're all here. We want to hear about your guide dog. So Ed, let's start with you.
Ed McDaniel: I'm sixty years old and I live in Morganton, North Carolina. I'm a semi-retired psychologist. I do have a couple of part-time jobs and I do quite a bit of volunteer work. My favorite is facilitating a vision loss support group, I have Usher Syndrome 2A, which means I was born hard of hearing, and I have retinitis pigmentosa. I have less than five degrees of visual field, and more recently I've been starting to lose acuity in one eye.
Ricky Enger: Gotcha. And how about your dog?
Ed McDaniel: My dog is Serena. She's four years old. She's a black lab. I got her two years ago from Guiding Eyes for the Blind in Yorktown Heights, New York.
Ricky Enger: She sounds lovely. All right, Jeff, how about you? Tell us about yourself and of course your dog.
Jeff Flodin: My name is Jeff Flodin, and I was a social worker. I'm semi-retired. Like Ed, I facilitate a low vision support group. I also write a blog called Jalapenos in the Oatmeal, Digesting Vision Loss. And I've been doing that for about 12 years on a bi-weekly basis. I was diagnosed with RP when I was 36 years old, declared legally blind when I was 43, cane trained when I was 45 and got my first dog when I was 52. I'm now on my third dog. The first two came from the Seeing Eye in Morristown, New Jersey. And Tundra was from a school called OccuPaws based in Madison, Wisconsin. I chose that school because at the time I was living in Chicago, so OccuPaws sent a trainer and Tundra to me, and we trained in Chicago for a couple of weeks and then COVID hit. So that was a big impact on putting mileage, getting miles in with Tundra.
Ricky Enger: Yes, and I'm still stuck on Tundra as a sort of a mode of transportation just like the Toyota Tundra, so I love that. And what breed is she?
Jeff Flodin: Oh, like Ed's dog, Tundra is a black lab and the three I've had have been a golden retrievers and now two black labs.
Ricky Enger: Love it. Black labs are wonderful. My dog retired in 2016, but his name was Eddie, and he was from Southeastern Guide Dogs, and he too was a black lab. So yeah, black labs represent. So I know that there are a lot of misconceptions that I think the general public has about guide dogs and even people who are thinking about getting a guide dog may have these ideas that turn out not to be right. I am wondering if we can discuss that.
I know one thing that I hear a lot is that you don't really need any training in how to travel. So no orientation and mobility training, no information on how to think about your surroundings, how to use your senses, how to get from one place to another without a dog. A lot of people think, "Oh, as soon as I lose some vision, I can get a dog and the dog fixes everything." So that's the one that I hear most often. Ed, do you have one that comes up a lot that you've heard from either the public or maybe you had yourself?
Ed McDaniel: I think one of the misconceptions is that you have to be completely blind to get a guide dog. That certainly wasn't the case for me, I still have some central vision. So I think that's a misconception for people using guide dogs and even canes as well.
Ricky Enger: Yeah, that's a good one. That's a really common one. And in fact we will talk about some of that a bit later in terms of working with a dog and still having some usable vision. Jeff, do you have one to add to that?
Jeff Flodin: Yes, I do. I think one misconception that I had was that a dog would cost about $50,000 for the student to purchase. And fortunately with the subsidies and the fact that most of these schools have endowments, that was not the case. So the good thing was that guide dogs were affordable. Along the lines of the O&M training, the misconception that I have run into is that getting a dog is like getting a self-driving car. You don't have to do anything. The reality to me is that your O&M skills need to be even sharper because not only are you learning, but you're also having to teach the dog. So it's twofold rather than just one.
Ricky Enger: That's a really great point. I had a trainer at Southeastern Guide Dogs put it this way, you need to be the brains of the team. I thought that really put things into perspective. Your dog is giving you all sorts of information, but you are the one who's in the metaphorical driver's seat. So for each of you, as you thought about getting a dog for the first time, Ed, I know for you this was actually a recent decision, what factored into that? We know that dogs aren't for everyone and there are some really great things about getting a dog and maybe some things that aren't ideal. Maybe part of the decision is something that just isn't working well for you with your current mobility aid if it's a cane or if you were using a sighted guide all the time or what have you. Ed, what factored into your initial decision to get a dog?
Ed McDaniel: I think the biggest factor was safety. I'm a runner and I wanted to be able to continue running and I had some issues with cars and safety and so Guiding Eyes for the Blind does train running guides and that's why I chose them. It was getting to where it was clearly unsafe for me to continue doing that without a dog. And so that was the major factor for me.
Ricky Enger: Yeah. And Jeff, you've done this a few times, so clearly something keeps you coming back. I'm curious if you remember that very first decision, what was going through your mind at that time? And then you've done it again a couple of times since. So what continues to keep you saying, "Yes, this is right for me," and are there things that you think about that make you possibly reconsider?
Jeff Flodin: Well, I have a history of resisting anything that's good for me in terms of adjusting with decreasing eyesight and that applied to cane training and most every other adaptive strategy or device. When I was living in Philadelphia and commuting into the center city by rail with a white cane, I was working in a program that had many visually impaired people as employees and some of them had dogs and some of them used canes. So I got a chance to talk to those people about the relative benefits and liabilities of each of those. I decided that as Ed said, for safety reasons and also as it turned out for comfort reasons, I seem to be quite hypervigilant when it comes to cane use and using the dog, at least for parts of the journey. I was kind of able to switch off the hyper end of the vigilance and not do the self-driving car, but remain the brains, but also disconnect a little bit so that I could enjoy the process of walking with the dog as opposed to being always on edge.
The subsequent dogs that I've had were pretty much the same reason. I moved from Philadelphia to Chicago, got a job where I was walking to and from work three miles a day. That dog lasted for nine years for his working life. We probably put 2,500 miles on walking and in varied weather, snow, ice, rain, heat and so on with 20 intersections. And once the dog learned that route, I felt tremendously safe and comfortable with him. And so much of it depends on the lifestyle. What purpose are you looking for the dog? Certainly, the school will want to make sure that you're not just getting a dog to have a furry friend around the house, but that you'll actually use what it's trained to do.
Ricky Enger: Yeah, that's a really good point. I think that goes back to the misconceptions discussion that we had earlier. One of those is, "Oh, I will have a companion that I can take anywhere with me. And that's really the primary reason I'm doing this." I think that is not the way to proceed. We do keep talking about this theme of being safe while traveling with a dog. Maybe it would help to elaborate a bit on what that means. When some people think you're safer with a dog, they're thinking that dog is a protector and that's not how we're talking about it in this instance. So could one or maybe both of you talk about what it means to feel a bit safer traveling with a dog as opposed to a cane?
Ed McDaniel: I think for me, as I said before, safety around cars was a big issue. And because I have both hearing and vision loss, I'm not always aware when there's a car around. That was creating some serious safety issues for me in mobility, but also just even traveling inside a building as well and navigating indoors. Obviously if you're not bumping into things, that's definitely a factor.
Ricky Enger: Absolutely.
Jeff Flodin: I agree with that. I think that's a real perceptive point too, Ricky, in terms of we're not talking about personal safety in terms of protection. I've had people who have mistaken guide dogs for guard dogs. But from a safety standpoint, in terms of missteps and using the dog for what it was taught to do, find the stairs, find the curb, find the door, find a seat, and so on, especially in urban areas when you're doing a lot of bus travel and so on, it's a personal safety issue rather than a protection.
Ricky Enger: Right. Thank you both for clarifying that because I think when people are listening and they haven't traveled with a dog before, it is difficult to imagine what exactly does it do that a cane can't. One of my favorite things about traveling with a dog was that with a cane, you generally have to touch something with that cane in order to then decide what you're going to do about it, whether that's go around it or in the case of stairs, "Okay, I'm going down or up now." With a dog, a lot of those things are handled just more seamlessly, which is wonderful.
For both of you, it sounds like you have traveled with a dog, and you still had some usable vision so you could get information about your environment visually. Now whether that information was trustworthy or not is an entirely different thing. I imagine that when you're traveling with a dog and you still have some usable vision, the dog is trained to keep you safe in these different ways. The dog has been trained to find the seat, so now I'm going to do that. I've been trained to find the stairs, so now I'm going to do that. How do you relinquish the right amount of control and trust your dog as opposed to maybe your problematic vision?
Ed McDaniel: I think for myself, because I still do have some central vision, there are times where my vision fluctuates depending on the lighting. And there are times where I don't see anything because of changes in lighting. So I definitely have to, in those situations, completely trust Serena. But there are times where I use all of my senses because she and I are a team and I use the limited hearing that I have, I use the limited vision that I have, and I use her cues altogether. That doesn't mean that we aren't going to make mistakes, but that's how we learn. Through our experiences I haven't had any issues with when I needed her more to let her show me the way. I think sometimes I do have to be careful that I'm not always the one determining some of the directions because she can see better than I can obviously, and I'm going to miss some things. So I do have to pay attention to her cues and not just make those decisions myself.
Ricky Enger: Great. Yeah, I was going to say, Jeff, how about you? Because you've gone from having more usable vision with your first dog, to now far less.
Jeff Flodin: Correct. They call it progressive vision loss. I don't think it's progress, in the usual sense of the term. Well, I took my dog, my first dog, Sherlock, to elementary school classes and talked to the students about life as a blind person and life with a guide dog. One day in a third-grade class, there were a lot of questions from the students, and then one day a third-grade boy said, "How hard was it for you to put your trust in your dog?" I thought that kid's going far because that's a pretty abstract thought for let's say an 8-year-old. The trust issue is really good because when you can't trust what you see or depend on what you see, whether it's a cane or a dog, you have to put your faith in something. I did have more usable vision in 2003 when I trained with my first dog.
It was sometimes disconcerting when the dog would be walking down the street and be aiming for that parking meter and I'm starting to cheat one way or the other to go around it and then he zigs out of the way in the last two or three steps. I know that there are some schools, and I'm not speaking for current or any particular school, that they would use a blindfold with students who find that they were being distracted and override the training that the school had put into those dogs.
That's the big conflict, I think, is that the dog trusts its own instincts and vision and smell and so on. If the dog senses that you are overriding it when you have the dog in harness and he or she's supposed to be in charge, that undermines some of the training. So it's a tricky thing, but it does ultimately involve trust. You put on a few miles, and you zig around the fire hydrants and the parking meters, and you stop at the stairs, and you stop at the curb. It's easy to put your trust in once you get a few miles on.
Ricky Enger: Yeah. So let's talk about people and dogs. People feel things about dogs. Some people love dogs and can't resist petting them even if they shouldn't. Some people are terrified of dogs, some people may have dog allergies. There's just this whole list of things that people might feel about dogs. I think that is reflected in how people interact with you when you're traveling with a dog. So let's talk about, I guess, the social benefits and drawbacks of traveling with a dog as opposed to a cane. What changes?
Ed McDaniel: I have found that a lot of times people do have trouble ignoring or not interacting with Serena because there are a lot of dog lovers out there, and that is distracting to her. A lot of times people will say, "I know I'm not supposed to talk to your dog," but then they'll start talking to her. So it is a challenge because she's very cute and very lovable and friendly, and it's hard for people not to do that. Sometimes I've had to explain that to people. Usually they understand and they back off, but not always.
So that's a challenge. I know some people say that having a dog, people are more likely to approach them. I haven't really noticed that much difference when I was using a cane versus a dog. I do have some central vision, I do notice sometimes when I'm going down the sidewalk and people see, it's common, they will sometimes cross to the other side of the street. I don't know if it's because they're fearful of dogs or they don't want to distract us. I really don't know, but I've noticed that happens sometimes.
Ricky Enger: And Jeff, what about you?
Jeff Flodin: Well, I understand and respect anyone who has a fear of dogs. I've been lucky to have good experiences with dogs during my lifetime, and I feel bad for those who have not. I want to respect other people's feelings. I too, like Ed, have had situations where I can sense or even hear someone approaching me on the sidewalk, and then the dog will kind of start to show off a little bit, prance a little bit. I have approached people who then would walk into the parkway between the sidewalk and the street and kind of be as quiet as they could be. So, maybe if I don't make any noise, the dog and the person won't hear me. And usually I'll kind of consider when I'm abreast of them and say, "Hi, how are you doing today?" Just kind of freak them out a little bit.
But especially in workplaces and so on, the best advice that I can give people who often come into contact with someone with a dog is to say, "The best thing you can do around a guide dog is to ignore it." I know that's really hard to do, like Ed said, "I know I shouldn't do this, but I just can't resist that cute doggy."
Well, that's true, but you have to restrain yourself. The dog is a social being too. It's a pack animal. It wants to meet the level of energy that is shown to it by its own energy. So if somebody comes part wheeling up, I mean, they're waving their arms, the dog reacts that way too. So there are rules, and you have to be firm. I mean, I had social situations when I was commuting by train in Philadelphia and I'd come into the car with a cane, nobody would say, "Hey, over here, over here, over here." As soon as I got the dog, people were falling out of the way to give me a seat and say, "Come over and sit here. Come sit here."
Ricky Enger: Right. I guess you're part of the package. I'll hear a bit about you, but yeah.
Jeff Flodin: Yeah.
Ricky Enger: Well, this is so wonderful and informative to hear from people who are happily using dogs and just being able to talk about what is realistic to expect and to get that glimpse into what it might be like to have a dog. In our show notes, we'll have a link to a couple of Hadley's workshops on talking about weighing the pros and cons of a guide dog. There have been a couple of schools mentioned, and we'll have a link to those as well as just some general research that you can do. There are a lot of schools and a lot of different training methodologies, whether it be in-home training or heading out to a residential situation where you're there for a few weeks in training. At Hadley, you can call us and we can happily answer those questions if you're thinking about doing this. As we wrap up, I'm wondering from each of you, what is something that you absolutely didn't expect when you got your dog? What’s a really surprising thing that you discovered?
Ed McDaniel: For me, with Serena personally, she never barks. I've never had a dog that never barks. I know some guys’ dogs do bark, but that was just very surprising and unusual for me to be with a dog that never barks.
Ricky Enger: Yeah, my dog never barked either. What I found surprising was that he was two different puppies. There was the dog in harness who was very serious and dedicated, and then as soon as that harness came off, he was playful and had his sense of humor, and both of them were him, but they were just two very different aspects. I guess I had never thought about that. Jeff, how about you?
Jeff Flodin: Yeah, that's a good point, Ricky, because it's not like I got a working dog. I got a working dog and a pet. I know there's a danger in that in terms of justifying to a school that you need a dog because they're giving you a dog that has been trained for months and months and in a puppy raising family for socialization. You're not just getting a pet, but two for the price of one. In that aspect, what Ricky was talking about is very important.
I think we've all been in situations that have become a little bit uncertain or even downright scary, whether it's surroundings or the weather or so on. The idea of being a team, because blindness can be so isolating, you can be alone in a crowd. I've had so many experiences when I've been with the dogs where I have depended on them as a member of my team, almost to the point where I want to break into the song, You'll Never Walk Alone, singing as we go down the street. So it's interesting, the different needs that the dog has fulfilled all the way from a practical to an emotional level.
Ricky Enger: Love it. Thank you. Yeah, thank you both for sharing about yourselves and your dogs, the journey from traveling in one way with a cane to traveling differently with a dog. I think, again, this has been really informative, and it's been a wonderful chat getting to know about you and your dogs. Thank you both.
Ed McDaniel: Thank you, Ricky.
Jeff Flodin: Thank you Ricky. Good to hear you Ed.
Ricky Enger: Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected]. That's P-O-D-C-A-S [email protected] or leave us a message at (847) 784-2870. Thanks for listening.
Hadley's Guide Dog Series
Recently retired, David Tatel served for decades on the US Court of Appeals for the D.C. Circuit. He also happens to be visually impaired. In this episode, he and Ricky talk about his recently written memoir, a book about his life as a judge, a husband, a father, a grandfather, and how all of these roles intersect with his experience with vision loss.
This week we talk smartphone tools and when you might want to use the different options. Jennifer Shimon from the Wisconsin Office for the Blind and Visually Impaired joins Ricky.
Sometimes, navigating life with vision loss goes a bit sideways. Things don't always turn out exactly as we've planned, and it can help to just laugh at these strange situations.
We've shared several episodes of listeners' stories, what we're calling vision loss bloopers. Today, Ricky Enger and Doug Walker share some more of these bloopers along with a few of their own.
Prevent Blindness' patient advocacy program empowers people facing vision impairment. Patients learn how to promote change with their physicians, their families, drug companies, and even policy makers.
The National Library Service has a free talking book program for anyone in the US with vision loss. Tonia Bickford, an advisor from Michigan's talking books program, joins us to discuss how to get the most out of this free service.
This week we learn more about visual hallucinations that sometimes accompany vision loss, a condition called Charles Bonnet syndrome.
Sometimes vision loss can make us feel less secure. This week we talk about personal safety with Hadley's Chief Program Officer, Ed Haines.
For many living with vision loss, watching TV is less enjoyable as they can't see what's happening on the screen very well anymore.
Audio description fills the void by narrating key visual elements. Listen in as Ricky chats with Hadley member and avid audio description user, Judy Davis.
Listen in to our conversation with Dr. Mondal, a low vision optometrist and professor at the University of Wisconsin. We chat about what to expect from a visit to a low vision specialist and the kind of help they can offer.
Have you listened to Hadley's community-generated audio podcast yet? In this episode, Ricky and Marc Arneson, Hadley's Director of Community, share a few stories from Insights & Sound Bites and discuss how to contribute your own story. Insights & Sound Bites | Hadley
Listen in as artist Chloe Duplessis explains how a degenerative eye disease changed, and didn't change, her life and love of art. "I thought art required sight. I was wrong."
Dr. Judy Box, a Hadley member living with macular degeneration, shares her tips for managing those important conversations with your eye doctor.