Announcer 0:00

Defeating Darkness with Dr. David Rimberg and co-host Paul Miller is brought to you by Sights for Hope. Serving the Lehigh Valley and Monroe County Sights for Hope empowers people who are blind or have visual impairments to live confidently by teaching skills, delivering supports, and championing assistive device solutions. At Sights for Hope, we believe that everyone deserves the opportunity to clearly see what's possible. Find out more today at SightsforHope.org.

David Rimberg, Ph.D. 0:34

Welcome to Defeating Darkness. I am David Rimberg .

Paul Miller 0:40

And I am Paul Miller.

David Rimberg, Ph.D. 0:42

Together we will explore how we achieve purpose with our loss of vision. Today's guest is Nadya Krause. She's on staff with Sights for Hope. She's an orientation and mobility trainer. Welcome.

Nadya Krause 1:07

Hi, David. It's so nice to be here. And thank you, Paul, also for having me today.

Paul Miller 1:12

As always, it's great to have people coming into our podcast that can help others. Welcome.

David Rimberg, Ph.D. 1:19

Nadya, what do you do for Sights for Hope? What is your job?

Nadya Krause 1:24

So, David, thank you for asking that question because I feel like orientation and mobility is such an underrepresented area and a profession. So, in a nutshell, an orientation and mobility specialist, which is what I do, it's an instructor who provides safety and orientation training to all ages. And the most important thing is that it's for somebody who is blind or visually impaired. The blindness and visual impairment field as a whole is such a spectrum. So we could have a client or a student who is completely blind, congenital, meaning from birth, or we can have blindness that's later onset. We could also have so many different disabilities as far as later onset of vision loss. A lot of times folks who lose their vision later on in life, after 60, they might need a little bit of orientation and mobility. So my job is I come in and I provide them with the training necessary to travel their environment safely, independently, and confidently.

David Rimberg, Ph.D. 2:26

You say there's different age groups, whether from being born to being, I guess, a senior citizen. What specifically in the way of tools and equipment do you use to support their mobility?

Nadya Krause 2:41

Great question, David. So in the area of when you're working with someone who is very little, let's say that I get a referral for a little one who may be a toddler. That little one is obviously going to be very interested in their environment. So we're talking about orientation with that little one. For instance, orientation of where's my room? Where are my parents? Where are my siblings? How do I get to my toys? Are we mobile? How are we going to be able to set up the safety precautions in the home to assist and kind of educate the family and the team to know, okay, how do we help this little one to be able to get around? I have had children that are as young as two years old to be able to put a cane in their hand. And as quickly as they start walking, we're able to put a small, tiny little cane and we're able to experiment with different cane tips. So marshmallow tip or roller tip or a metal tip. And the kiddo is able to navigate whether it's around their home or their preschool or to the playground. Then as that service continues and the child is getting older, now we're talking about transition to school. So that would look like using the cane and using the orientation skills to be able to go to the classroom, to be able to go to related arts, to be able to go to dismissal. Perhaps a student is interested in some extracurricular activities. So we're talking about okay, how are we getting to the classroom where the extracurricular activity is being held? Once we talk about transition to high school and we're talking about transition into what happens after high school. Now we're talking about using similar things. So cane. But at this point, we're talking about perhaps somebody gets a guide dog. That student is going to go to a very specified training program. There's a few of them out there in the country, and they come back and they now have a guide dog, which is an additional tool that's able to be used. So again, same orientation applies, whether it's on a college campus or at a trade school, or perhaps they're going out into the job site or a job core. We're still talking about where are you in space and then using the tool, the dog or the cane, to be able to navigate from place to place. So how do you get to where you're trying to go?

Paul Miller 5:08

It would seem to me, Nadya, that this is such an individualized approach because everyone has different things that they need or different ways to be able to get around and to be able to feel confident in the way they move through space and time.

Nadya Krause 5:25

Paul, that's such a valid point. I've had several clients and students over the years that despite them having the same visual diagnosis, they have totally different ways of accessing their environment. As an example, I've had students that they have the same exact diagnosis. However, their acuity field cut might be totally different. Or perhaps the functional aspect of their vision, meaning how they do in Glare, or perhaps how they do in the dark. It might be great for one person, meaning they're able to navigate it. And then it might be complete darkout for somebody else. And also it depends on the onset of the condition. I've had a student that just recognized that the onset just started, as opposed to somebody else, that the onset might be going on 15 years ago. So it's highly individualized with what the specific individual needs. And that's the exciting part about what I do. I don't think I've ever had two students with the same condition. I've had to teach them the same way. That's what makes my job really cool and interesting.

Paul Miller 6:32

Yeah, I would imagine. And again, uh when I first found out that I was going blind, I got mobility services. My first trainer was a man by the name of John Ford, who was absolutely amazing at being able to help me to get around places. But as time went on, my visual field got less and less.

Nadya Krause 6:59

Yeah, I'm glad that you brought up John. He's incredible. I actually worked with John in the past, and you're absolutely right, Paul, in saying that as someone gets older, or perhaps the condition changes, expectedly or unexpectedly, sometimes, unfortunately, I think it's very interesting to watch the progression of how someone becomes independent and realizes that, hey, despite this visual diagnosis, my life is not over. It's just going to be a little bit different. And once the person realizes that, hey, I have this condition, but I can still do everything. It's just going to be modified. And that's the beauty of all of this. That's the beauty of orientation and mobility, and that's the beauty of this field as a whole.

David Rimberg, Ph.D. 7:43

How did you come to get interested in doing this kind of work?

Paul Miller 7:48

So, David, I always wanted to be a teacher. I just didn't know what type of teacher. This whole thing started about 20 years ago. I was a sophomore, I believe, at Kutzdown University. And I took my first class in education called Introduction to Special Education. And each week is a different disability category that we discussed. I stumbled upon the field of visual diagnoses and visual impairments, and I fell in love and never looked back. Finished Kutzdown and then immediately went on to become an orientation and mobility instructor. It took about two years, and I've been here ever since. Loving every single moment, every day is different. It's very cool. I would love for there to be more orientation and mobility instructors because there's just such a shortage. So, Nadya, what is the difference between orientation and mobility?

Nadya Krause 8:41

Paul, great question. Orientation skills talks about the mapping skills. So prior to traveling and you're going from place to place, very important to plan ahead. So what does that look like? That looks like you're asking yourself, or the instructor would ask you, okay, before you even stand up and start moving, where are we going? Are we going down the hall? Are we going to the right, to the left? Are we going into a different building? So it's the map making skill mentally of where exactly do you need to be? And it's the spatial awareness that we all need to be aware of, right? So that looks like this. It doesn't matter if you're in your house. So perhaps you just moved into a new home and now you're thinking about, okay, where am I located right now? And do I need to go to the dining room, the garage, the kitchen, outside to get the mail, those types of things. Then we're moving on to if you're in a school building, where do you need to go? So before you even start moving, you need to address where's my class? Where am I located right now? And where do I need to go? The mobility aspect of it is the actual act of getting to where you were just planning to go, that could look like using a cane, that could look like using a guide dog, that could look like using a guide who's helping you, or it could look like a combination of all of the above. I've had a lot of students that, for instance, during a fire drill or an emergency evacuation, they're using their cane for orientation purposes. And the mobility aspect of it is using their cane and a guide to safely and independently as possible get them out of the building or the environment that they're in and put them in a safer environment. Generally, both of them are very important. Orientation is the where are you in space? And then the mobility component of it is what tools do we need to use to get you from X environment to Z environment?

David Rimberg, Ph.D. 10:40

As an adult, uh I always find in the public's area having a problem with the uh restrooms. How do you manage that to uh guide students to use the restrooms?

Nadya Krause 10:53

Restrooms are a tricky business because there's really no standard, universal way in which a bathroom of in any area or environment is going to be created. Meaning, I find typically that architects don't think about and go, you know what? We should consider what happens if we have somebody who's blind or visually impaired coming in to use our facility. I understand because it's such a low incidence disability, they're not thinking of a small percentage of the general population. So what I typically do, and what a lot of the folks that I've worked with and communicated with on an orientation of buildability like a professional level, is we try our best to have multiple staff members around. If I'm alone and if I'm teaching a client that is going into, let's say, we're going to a coffee shop and they would like to go get a coffee and uh-oh, nature calls and we have to use the facilities. Usually I'll make sure that somebody is around and I'll just say, Do you mind if I help you? And we give a general orientation. So what does that look like? You're providing what is called a clock system. I'll say to my client, if you're looking straight ahead, the sink will be at 12 o'clock, the stall would be at approximately three o'clock, the paper towels will be at nine o'clock, and so on and so forth. And what I'll do throughout this experience is I'll continue to ask the person, what assistance do you need? Do you need me to just stand outside? Do you need me to, once you do what you gotta do, come in with you and assist you? Do you need me to kind of just be your uh what I call emotional support human and just kind of make sure that I'm right here, you're safe, everything is good, and you let me know what assistance you can provide. But bathrooms are a great example, along with parking lots. Parking lots are another nightmare because, again, there's really no rhyme or reason for the way parking lots are created. So we have to address for that. And sometimes parking lots are very small and they're in a friendly area, meaning the neighborhood and the community gets to know somebody who's blind or visually impaired. Other times you're dealing with parking lots such as Walmart parking lot or the big grocery stores like giant parking lot. And now you're it's kind of like every man for themselves, and you just use the assistance of somebody who's excited to be able to navigate that. And there's absolutely nothing wrong with utilizing assistance when it's appropriate.

Paul Miller 13:30

One of the things I just got back from Europe and came into the airport and went to the uh restroom. And it was an absolutely disgusting thing because you have to try to feel your way around what's going on inside of a restroom. And it couldn't find the paper towels, couldn't find the trash can. It was just an awful experience. And of course, the person with me is of opposite sex, so they can't really go in the room with you, with other people in there. So that made it really challenging, and it would be nice if they were a little bit more uh standard.

Nadya Krause 14:06

I agree with you, Paul. I think that that's something that unfortunately is kind of a universal problem because we have an airport, we hope that they're staffed appropriately for the given shift. If they're not, then you're kind of at the mercy of who happens to be doing the cleaning duty in the airport that day, which is another level of frustration. And once you get through the situation, you're already in a stressful situation where you're at the airport, and most people I know don't particularly enjoy spending a whole lot of time in an airport. Now you're having to use the bathroom, stressful situation, and you're coming in and going, I can't find anything. On top of the anxiety and stress you're feeling with using the restroom, now you have to kind of fight for your life and go, where's the water? Where's the paper towels? Where's the exit door? Where's the soap? It's all those basic skills. But I generally agree with you that there's several conditions in which it's just very frustrating. And I wish we could do better.

Paul Miller 15:07

The good news is that they do have single bathrooms at the airports now, which is a lot easier to deal with if you can get it in them.

Nadya Krause 15:16

That's just it. Is that right, Paul? So yes, and let's hope that they're clean. Again, most of the time they are pretty okay. And most of the time, they do have staff that checks the facilities hourly to make sure that all appropriate equipment are in there.

David Rimberg, Ph.D. 15:32

Yeah, there is signage in bathrooms if you have some vision. They should have an indication that the bathroom is visually impaired friendly. It's a problem for people who are visually impaired, especially totally blind.

Nadya Krause 15:45

It is, David. And especially for someone that has recently lost their sight. Again, you're having to get reoriented to the facility. And it's a difficult thing to be able to go, okay, through every airport and say, is this bathroom accessible? Do we have everything marked appropriately? But I think it's a great goal to have.

David Rimberg, Ph.D. 16:05

Nadya, what are the different types of white canes?

Nadya Krause 16:08

David, so great question. Again, basically three different types of white canes. I believe the first one and the most popular one is the folding cane. Material-wise, it's made of either graphite, aluminum, or fiberglass. In the middle, there's a bungee cord that allows it to be folding. And then you can kind of get a little bit fancy with this. And depending on what company you order it from, you could modify the body of the cane as well as the shaft of the cane. And you can also make it that the grip of the cane is either wooden or you can also make it be the golf grip, which is the traditional. The cane tip itself, you can have it modified where it's a marshmallow tip or a jumbo tip or a metal tip or even a pencil. Another popular one is what we call the rigid cane. Rigid cane is in the title, it doesn't fold, it doesn't do anything, it just stays there. In my opinion, it's a little bit cumbersome only because it doesn't fold. So sometimes it can be a little bit tricky to soar it and to not have it take a whole lot of space. And then there's another very popular cane, the telescopic. Telescopic cane is great because it goes all the way down into basically one one and a half foot section. And what's great about it is that it collapses on its own. What's not great about it is it's not very sturdy. So I've had several students, unfortunately, break them very quickly, but I find that depends on what your preference happens to be as far as the type of cane that you're going to use. Nadya, who pioneered the white cane and its uses? So 1920s approximately, we're talking about Bristol, England. There was a man by the name of James Biggs. He lost his sight in an accident. He got very clever. He got a walking stick, which was wooden. He painted it white to make it be very visible to pedestrians and just the general public, any pedestrians, oncoming vehicles. That's kind of where everything started. And then we fast forward about 10 years, and there's a gentleman by the name of Gilly d'Urbemont, and I apologize because I know I am butchering this person's name. We're talking about the 1930s, which is when the white cane movement began. Basically, kind of pushed the white cane along and made it be a little bit closer to what the white cane looks like today, meaning being aluminum, graphite, fiberglass, and closer to what the modern cane looks like.

Paul Miller 18:32

What kind of techniques do they use to give people an idea of where they are?

Nadya Krause 18:39

Generally speaking, you're gonna position the cane above the waist, and when you're pushing the cane, you're gonna move it from side to side, and then you're going to move it from side to side, and it depends on where you are, you're going to make sure that the cane tip is either in contact with the surface or the ground at all times. Or some folks prefer to have what we call the two-point touch method, which is you're tapping the cane as you're walking. You're gripping the cane, you're positioning it in front of your stomach in the middle, approximately waistline. And as you're walking, you're moving the cane from side to side. It's kind of like a ballet dancer. So you're moving and you're doing tap, tap, tap, tap back and forth. Preference depends on the individual cane user. Some folks prefer doing a kind of like a hybrid model, depending on where they are. They will keep their cane tip on the ground. Other folks prefer to kind of go tap, then constant contact, then on the ground, then back to that. You're technically supposed to position the cane in front of your stomach, but because a lot of times with jagged sidewalks and broken sidewalks, and depending on where you are, you might have some weather stuff going on. So you might have some weathering. People tend to jab their belly, which isn't very pleasant. So they tend to put their cane to the side of their body to prevent that from happening. The downside of that is you're gonna have to overcompensate your cane technique, meaning you're gonna have to move the cane in front of you with a very wide sweep and an arc, which you look on a little bit silly when you do it, but it's a safety thing.

Paul Miller 20:16

I can tell you that I've jabbed myself a lot of times in the stomach, catching on a sidewalk or even just a crack in the sidewalk. So I change the tip of the cane so that it doesn't get caught there because it is rather unpleasant to get that thing jammed in your stomach. And I will say that when it does, it really is disconcerting because one, you stop immediately, but then you have to try to get it out of the thing that it's stuck in and it pulls the cane apart.

Nadya Krause 20:48

Exactly. Yeah, and perhaps if you're so much unlucky that the cane ends up getting really stuck in the grate, and now you end up basically losing the cane. And now what happens if you're alone and you don't have a backup cane to fill in for the your substitute for your now long lost cane?

David Rimberg, Ph.D. 21:04

Nadya, the what are the the range of costs of uh cane?

Nadya Krause 21:08

David, great question. Most of the canes are pretty economical. We're talking anywhere between $25 and they go all the way up. As an example, so I'm not sure how I feel about this yet. You can go on Amazon and buy a cane. The problem with this is that you can buy a cane, but you don't have an instructor to show you how to use said cane. The most expensive cane I've seen recently, and this is going into technology and advancements and where the cane in general is going. There is a cane that's going to be soon available, David, for approximately $1,500. That it's kind of a hybrid situation where we're combining AI technology with the concept of using a cane. It's called glidance, and the cane itself is called glide. The whole idea of it it's going to be able To tell you what is around you via an audio feedback. There is also right now a cane that's called WeWalk. Approximately $800 to about $1,000. The idea of it is that you're able to connect your smartphone via Bluetooth, and then it's giving you some additional information about obstacles, what's around you, and those kind of like AI advancements. David, could you share with me and with our audience what is your experience like with using the cane and generally with orientation and mobility?

David Rimberg, Ph.D. 22:34

My original use of the cane was friendly, and I adapted to it real well. As an engineer, I surrendered to what had to be done, which I using the cane as a guide. Also, in addition to the cane, I would use my hands to touch things, especially around the house that I used the cane. So it was easy for me to adapt the use of cane in the house. In public areas like the streets, I got another cane which was more rugged for a call like streetwear, where there may be concrete. The regular white cane is not suitable. A heavy-duty cane with a marshmallow or a ball on the end will uh assist me much better. Paul mentioned he's got his cane stuck in certain areas, and that's when I started using the heavy-duty cane when I knew it was going to be on concrete services.

Paul Miller 23:31

As you guys know, I do martial arts, so the first thing I thought of was, oh, this would be cool to use as a uh a weapon. And uh I started doing some uh training with that. And of course, I asked the people at the uh Site for Hope if that's a good idea. They said, Well, I don't think that's a great idea, teaching people how to do that, but I got a titanium cane that they're not going to break.

Nadya Krause 23:57

Paul, I noticed that you have a guide dog with you. Can you tell us a little bit about that whole world? Because it's parallel to what we're talking about with the cane, but it's slightly different as well.

Paul Miller 24:08

I was actually very surprised that when I got my guide dog, that they said that having a cane in addition to the dog was a great idea because it was helpful to keep my dog on the right path, especially if we're in an area like a parking lot or like a country road, making sure that they stayed to the side of the road. And I would use the cane just as a guide without having to keep putting my foot off the side of the road. And that was really uh something I never thought that I would have to use, having a guide dog.

Nadya Krause 24:50

Do you find with the differences of being a cane user previously as well as a guide dog user now, do you find your pace to be different, whether you're using the guide dog or the cane?

Paul Miller 25:01

Using the guide dog is definitely faster than with just the cane itself, only because I have to be conscious of where I am at all times. As far as the dog keeps me safe without having to necessarily worry about stumbling over something or being able to stop at the curb and things like that.

David Rimberg, Ph.D. 25:24

Nadya, what are the resources available to children?

Nadya Krause 25:28

David, several resources are available. And this is pretty much regardless of what state you live in, particularly so I know from experience here in Pennsylvania, I've used uh several organizations a lot. I've used American Foundation of the Blind. I've also used American Federation for the Blind. There's another resource called the American Printing House. So American Printing House is really nice because they have a catalog that provides equipment to pretty much all level of kiddos that have some kind of vision diagnosis, whether it be that it's cortical visual impairment and it's more neurologically based, or we're talking about glaucoma or cataracts, or perhaps we're talking about something like retinitis pigmentosa. On a more like a ground level, I work a lot with the Office of Vocational Rehab and the Bureau of Blindness Visual Services. Specifically, the Bureau of Blindness Visual Services, they provide additional funding as well as additional services that we can send the kids like to a summer camp, for instance. A lot of our students go to a camp that is available for kiddos that are interested in being college-bound after high school. There's also several programs that the kids can participate in and after high school through OVR, the Office of Vocational Rehabilitation. A lot of times, Office of Vocational Rehabilitation also sends out for a technology evaluation so students can determine what technology they might need to have in college and after high school, for instance. Perhaps they need a new braille note, or perhaps they need a laptop, or perhaps they need an iPhone, perhaps a student needs to utilize Zoom text as the software to be able to access their academic materials. All those things can be addressed by Office of Vocational Rehab and can be determined based on the individual student and what they might need. So I also wanted to just mention a couple of other things, other resources available as well. So specifically locally in Alehigh Valley and including Monroe County, we have Camp by Ken, which is a really cool summer camp for the kiddos. And then when we get to the transition age, which is 14 and older, we have a program through Sites for Hope called Transitions, focusing on college readiness and work activities and all kinds of different opportunities that the kids can pursue.

Paul Miller 27:47

Nadya, what is traditionally celebrated on October 15th?

Nadya Krause 27:52

So, folks, so White Cane Safety Day, yay! Is celebrated on October 15th, also known as White Cane Awareness Day or Blind Americans Equality Day. There's actually going to be, a fun fact, a coming up soon at Kutstan University. There's going to be a cane quest. They do this every year for the kids. Very cool opportunity. It's a day that honors achievement of people who are blind or visually impaired, highlighting how vital of a tool the white cane is for independent travel. It reminds drivers to please slow down and please follow traffic patterns and safety laws regarding pedestrians. This is a really cool opportunity. Nadya, it was a pleasure having you on this podcast. I want to thank you very much and participating with Sights for Hope. David, thank you for having me. It was a pleasure. Paul, same thing to you. Thank you so much for having me. It was a pleasure. I loved our conversation, the fellowship, the mentorship. It was great.

Paul Miller 28:58

I'm Paul Miller, and thanks for listening.

David Rimberg, Ph.D. 29:00

And I'm David Rimberg. Thanks for listening. Stay tuned after a short break and listen to the Feeding Darkness podcast.