White Canes: Fears, Stigmas, and Uses

Hadley

White Canes: Fears, Stigmas, and Uses

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 in honor of White Cane's Safety Day, guests share stories from rejection to eventual acceptance and pride in using the white cane. White Cane Safety Day happens each year on October 15th, and it was first instituted in 1964. It was created to really raise awareness among drivers. If a driver sees a person with a white cane, they know to yield the right of way to that pedestrian. And that's certainly a laudable goal for sure.

Since that time, celebrations take place each year, and they still have that same spirit of raising awareness for the general public. I think another thing that White Cane Safety Day celebrations do is to allow those who are using a white cane, whether they are brand new to it or they've been using it for quite some time, to be with others like themselves.

It's a chance to just normalize the idea that using a white cane is okay. That's really what we hope to do with this episode as well. So, hearing from people who may have had some awareness of the cane, but certainly not feeling like it was the right path for them. And how something that typically has such a stigma attached to it can then become a source of pride and independence. First up, we'll hear from Larry. Larry, I know that you were pretty hesitant initially. What ultimately led you to decide, yeah, this cane is pretty cool? And then your family members, what was their role in your journey toward acceptance of the cane?

Larry Carlson: In February of 2016, my retina detached and tore in multiple places. I've had issues with my eyes ever since. And I said, "No, I don't need a cane. Those are for blind people." She said, "You're legally blind in one eye and you're wearing a Dixie cup because you have no peripheral vision there." And I was like, "Well, okay. Yeah, but I can still see out of the left eye." I mean, I was off and on with it for probably about a year. I waffled a lot on that cane thing for a long time before I finally just said, "I'm tired of falling." I would use it and I'd walk, and I wouldn't fall. I wouldn't use it on a five-mile walk and I'd come back and my pants are ripped and the knees are bleeding somewhere, scrapes on the hands. And my wife would be, "What happened?"

And she's like, "No, you really should consider that cane." And I was like, "No, I'm not ready for it." And then I took that hike at Red Rock. It was just one mile out and back. I saw these blobs coming at me because that's how I see people. Until you get within probably a foot or two, you're just a blob. I stepped off the trail and the only thing I really remember is that I was flat on my back. I know somebody pushed me because I didn't fall. My son was right there, and he said, "Dad, you stepped off the trail and fell." I got back to the trail head, and I couldn't stop the bleeding on my left knee.

I decided from there on because I'm going to carry this scar on my knee for the rest of my life. I was like, "You know what? This is just one of those things I'm going to have to learn. I have to carry it with me, and this is what we're going to have to do." Once I got that all dialed in, I've been good with it ever since. But like I say, it's just getting used to it. It's adding to your routine if you will. It's like you hit the door and it's okay, car keys, keys, phone, wallet. I got to remember to make sure I have my cane and I've got a spot right there by the door where the canes are all stacked up and I grab the primary cane and go.

Ricky Enger: What do you wish somebody had said to you before you fell a lot of times that might've sped up your decision to ultimately get a cane?

Larry Carlson: In my case, I'm just bullheaded, so I'm not sure that anything could have been said. Honestly, I don't know. I just had to come to the decision on my own. But I would tell anybody that's waffling on a cane or not, unfortunately, we're not getting any younger and it takes a lot longer to heal. All the falls I've taken, I could and should have a couple more broken bones on my record than I have because I didn't want to carry the cane with me and use it. I was concerned about what other people say and I realized they can't live my life; I have to live my own. It's not an easy decision to come to, but once you come to it, it's fine.

I think the big thing with the cane is it's an icebreaker. It's a communication tool. I can talk to people because they realize, oh, this guy doesn't see that well. He's totally blind. And I inform them, "No, I can see you. I just can't define what I'm seeing." They're curious, but they don't want to ask that question. "Well, why do you have a cane if you can see?" And then when you tell them that, "Hey, I can't read the sign across the thing, I just kind of have an idea what it says," then they understand and they realize that, hey, he can't see below his waist. It makes it easier the next time they run into somebody with a white cane, whether it's me or somebody else, they'll also understand that the guy's got a problem with his eyesight and that's why he has the cane.

Ricky Enger: What a fantastic story. Larry starts out feeling very hesitant and unwilling to carry the cane. Ultimately, it simply becomes a part of his routine. And not only does he accept it, but he is engaged in educating others in what the white cane can do and what it's for. Sometimes that education makes all the difference in someone's decision to use a cane. And then again, sometimes you can know everything there is to know about using a white cane and still feel some resistance to doing so yourself. And that's what we're going to hear in Dorrie's story.

Dorrie Rush: I was diagnosed at the age of thirty-three, which is 31 years ago, with Stargardt disease. Stargardt disease is an inherited retinal disease that impairs central vision. It's mostly concentrated in central vision, and it is similar to macular degeneration. So, people who are going through age-related macular degeneration, my progressive loss is very similar, mostly in the center. At the time, the changes were very slow. I will say that my vision has been changing. It's always been changing, but relatively slow. I've only had a few significant really noticeable, meaningful changes. And one was recently during the pandemic.

Ricky Enger: I'm so glad that we have a chance to talk about this because vision loss is not new to you, but the cane is. So, what was that like? What drove you to finally make that decision to say, "Well, I think maybe I should try this?"

Dorrie Rush: It was definitely a long time coming. And frankly, Ricky, I know so many people can relate, I hoped the day would never come. I really did. I know a lot of people with central vision loss and most people don't use canes. I pretty much thought you can navigate the world. You see what's all around you, what you lose is the detail in the center. So, reading and identifying faces, I have no facial recognition. That is very difficult. But walking around the world is usually something that you can do. Maybe it's not smart to do it without some assistance, but you can do it. So, I did it for a very long time and I had no problem. I wasn't encouraged to use the cane. And I was even sometimes shamed into why aren't you and you should be and it's not smart that you don't.

I always knew that I would know when I needed a cane. I knew I would know. I actually also knew that it would have to do with not being able to navigate the street safely. So that's what happened. During the pandemic, I noticed everything was weird and changing and our lives were so different and isolated. I remember the day that I noticed first in the street and then when I was in a supermarket that things were really looking very different, that my vision had changed. So, I knew it was time for the cane. But honestly, even though I knew, and even though I am a professional in this field, and even though I give great advice, right?

Ricky Enger: Yep.

Dorrie Rush: I don't always take it. So, I was resistant to be sure. And it was, for me, a borderline, a boundary that I knew I had to cross it, but I still didn't want to.

Ricky Enger: That's actually an interesting aspect of this to talk about, because I know that, in fact, there was actually a quote that you mentioned in your latest article. It's a quote from another blogger. And she basically says, "If I use a cane, I'm going to look blind, and people are going to stare at me." So, can we talk about that? Not just the practical aspects of what does blindness mean exactly, but also that whole stigma around disability that still certainly exists?

Dorrie Rush: Oh, there's no question. Stigma is a word that really came. Actually, I received many, many notes from people mentioning that this would remove stigma, and I hope that's true. But yes, I was absolutely impacted by stigma. It's so sad what I think so many of us feel. Maybe we just don't articulate it so easily. I was, I must say, the most surprised.

With all of my resistance and I knew it was coming and I knew I had to do it, and so I eventually did get on the phone and got the cane. We were going out for a walk on this path that we go out on just to enjoy nature. It's beautiful here. And a few weeks before, a week or two before we had been on the path, and I was very uncomfortable walking on the path, and I thought, "Ugh, I don't see the colors that well anymore. And now I can't even walk on the path so comfortably."

And I was realizing that little by little I was shrinking down my world of independence. That was the worst thing. So, I knew I had to do it and it was a place I didn't want to go. I didn't want to go there. It was an advancement into a place I hoped to avoid. But once it was in my hand and once, I understood on that path, for example, the walk I had taken there a week or so before was so different now with this cane in my hand. I didn't have to worry about holding onto someone or walking behind someone so I could see what was happening. I just had to walk with this cane and accept the information it was giving me. In the next half mile, I would say, I was amazed at what a difference it made for me so quickly, so quickly. The confidence and the security.

The sense of security that it gave me back lifted all of the stigma and the concerns about what people would think. It didn't matter anymore because I found something that was so empowering again for me. And it really changed a lot in a very short time. I have no regrets. It sits at my front door, open and ready to go. I don't go anywhere without it. I think that we all have to get to these places in our own time and our own way. No one can push you when you're not ready to go. All of that stigma, resistance, fear, sadness even, dissipated from me very quickly. And what I've gotten back is so much more powerful than what I was afraid I was going to lose.

Ricky Enger: Wow, what an impactful statement that is. What I gained was so much more powerful than what I thought I was going to lose. Dorrie, like many people, did not start out feeling like the cane was going to be a good fit for her. There were reasons both in terms of how she viewed herself and how she thought others were going to perceive her that just added to that overall resistance. I think that just illustrates so well that this decision is not strictly one of practicality. There's a lot of emotional things involved as well. You may have friends; you may have family who are pushing you to do this. But until you're ready to explore it yourself, it's just not going to happen.

Once you do decide to take that step, moving from thinking about it to more seriously considering what does it feel like to have one of these things in my hand? I'm not saying I'm going to use it all the time, but I at least want to know this part of it. Then it's time to find a professional who can show you the ropes, so to speak. How do you hold it? Where can you use it? Who is it for? Can only certain people have one? So, orientation and mobility or O&M specialists, are the group of professionals who are best equipped to make that first introduction. And now we'll hear from Elijah Haines, who is himself an O&M specialist, on how he introduces the cane to people for the first time.

Elijah Haines: My name is Elijah Haines and I'm up here in Anchorage, Alaska working at the Alaska Center for the Blind and Visually Impaired. I am a certified orientation and mobility specialist and a certified low vision therapist as well. I do rural outreach travel here at the center as well. So yeah, enjoying exploring Alaska and getting around and definitely teaching cane travel in all sorts of conditions. Lots of snow sometimes, you can imagine, and here in town as well. A big misconception is that a cane is only for people who have no light perception or are totally blind, people might say. And not realizing that most cane users have some vision left and a wide variety of vision. Some people might need it just in certain conditions and in certain environments. It can be a useful tool for a lot more people than people first initially think when they think of maybe the stereotype of a long white cane.

I just try to introduce it in slow steps for people. People initially say they don't want a cane. I at least hand it to them so they can feel it, feel the weight of it. It's always a lot lighter than they think. They can feel the different tips on it, and they can walk a few steps with it. And if they hand it back to me and say, "No, thanks. That's all right," at least they've tried it and so they know a little bit more about it than when they first came to me. I think that it's normal to be uncertain about it. And if you're worried about the stigma of carrying a cane and what people are going to think or wonder how exactly you're going to use it, that's all normal. You're not doing it wrong. You're not adjusting badly or you're not a bad blind person or whatever it is. That's totally normal to have that dilemma and struggle with that.

I think just to realize that, as a society really, we've stigmatized the canes so much and other mobility devices that that's a very real thing to grapple with. I would say that if someone's still uncertain about whether they should use a cane they already have or, get a cane, hear more stories. It's not always smooth, but if you talk to more and more people, it starts to normalize cane use. You start to realize, even if you feel like it, you definitely are not the only one that has been in this situation. Learn how other people adjusted. How did they explain to friends and family when they were suddenly walking with a cane? How did they deal with those awkward interactions of passers-by on the street every cane user has? And I think the more people can learn and listen to those stories, the more they can picture themselves as a successful cane user.

Ricky Enger: That is so well said, Elijah. And it's what we hope to do with this podcast as well. The more we can normalize having a cane, removing some of that stigma and removing some of that feeling that you're the only person who has ever gone through this trepidation or a reluctance to do something that may ultimately work out well for you. It helps to hear from others who have had that very same struggle.

If you're listening now and you're thinking that you are ready to learn a bit more about the white cane, Hadley has a forthcoming series of workshops talking about the cane, so stay tuned for that.

In the meantime, you can check out the show notes for some resources on the types of canes there are, the types of tips there are, where you might go to either purchase or receive a cane for free, and how to go about finding an orientation and mobility specialist to get you started. Thank you so much for listening, and we hope you've learned something that makes you feel like celebrating the white cane.

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 [email protected]. Or leave us a message at 847-784-2870. Thanks for listening.