Remarkable World Commentary Episode #61: Interview with Ed Henkler, Founder, The Blind Guide

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In this uplifting episode of Remarkable World Commentary, Donna J. Jodhan welcomes Ed Henkler, founder of The Blind Guide, to trace his move from the Navy and a long corporate chapter to a purpose-driven life shaped by his mother’s vision loss and years of service with an association for the blind. He explains how an unexpected early retirement nudged him toward assistive-tech innovation and advising startups, then unpacks the origin of The Blind Guide, including the ethic of offering an arm rather than grabbing one. Ed shares his “choose to thrive” philosophy, outlining six progressive levels that start with basic daily living skills and build toward personally defined peaks, illustrated by sensory-rich experiences, new hobbies, and elite pursuits that show what thriving can look like in practice.

For listeners seeking practical takeaways, Ed maps a clear playbook. acknowledge grief and then choose to thrive, plug into in-person O&M and tech assessments through local associations, shift from “caretaker” to “caregiver,” and use creative bartering to trade tasks so independence grows alongside support. Speaking to employers, he reframes disability hiring as a measurable business win, citing stronger retention, safety, productivity, and morale when teams include people with disabilities, and he urges leaders to tell business-forward stories rather than pity narratives. The conversation closes with an invitation to live broadly at any age or ability, to pursue independence with smart support, and to value the problem-solving ingenuity that people with vision loss bring to work and community.

TRANSCRIPT

Podcast Commentator: Greetings.

Podcast Commentator: Donna J Jodhan, LLB, ACSP and MBA, invites you to listen to her biweekly podcast, Remarkable World Commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives, and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, site loss coach, dinner mystery producer, writer, entrepreneur, law graduate, and podcast commentator. She has decades of lived experiences, knowledge, skills, and expertise in access technology and information as someone who has been internationally recognized for her work and roles, she just wants to make things better than possible.

Donna J. Jodhan, LLB, ACSP, MBA: Hello everybody, and welcome to another episode of Remarkable World Commentary. I’m Donna Jodhan, a lifelong disability advocate and one who sees the world mainly through sound, touch and a stubborn optimism. I am a law graduate, accessibility consultant, author, lifelong barrier buster who also happens to be blind. You may know me from a few headline moments. In November of 2010, I won the Landmark Charter Challenge case that forced the Canadian government to make its websites accessible to every Canadian, not just to sighted ones. And in July of 2019, I co-led the Accessible Canada Act with more than two dozen disability groups to turn equal access into federal law and most recently on June the 3rd, 2022. I was greatly humbled by Her Late Majesty’s Platinum Jubilee Award for tireless commitment to removing barriers. When I’m not in a courtroom or a committee room or a pottery studio, you’ll find me coaching kids with vision loss, producing audio mysteries, or helping tech companies to make their gadgets talk back in plain language. Everything I do circles. One goal to turn accessibility from an afterthought into everyday practice. I invite you to think of this show as our shared workbench where policy meets lived experience and lived experience sparks fresh ideas. Now, before we jump into today’s conversation, let me shine a quick spotlight on today’s guest, a change maker whose work is as every bit as remarkable as the world that we are trying to build. Ed Henkler, welcome to my podcast.

Ed Henkler: Thank you so much, Donna. It’s a pleasure to be here, and I commend you on all the things that you’ve done and continue to do. It’s such important work and it’s good to have somebody that refuses to accept the answer. No.

Donna J. Jodhan, LLB, ACSP, MBA: And I am so happy that you are on our side of the fence. So, editor, I’d love to start with your inflection point after the US Navy and two decades of work. Right. What led you to retire early and to reimagine your career around accessibility?

Ed Henkler: Donna, I’d love to tell you that it was an active decision by me, but I think the truth is it’s probably I’ve been more passive in my career. So I’ll back up just for a second. As you said, I spent ten years in the nuclear power Navy. I’m proud of it, but my family didn’t have any particular veteran history. So while I’m proud of it, I can’t necessarily say I was passionate about it. Right. And then when I joined Merck, I really had no connection to biopharma. But it was a good school or a good good company, and it paid well. And I had skills that were well suited to the environment. So I spent 31 years of my life, as I tell people, doing things of which I was proud but probably never passionate.

Donna J. Jodhan, LLB, ACSP, MBA: Okay.

Ed Henkler: And then, age 52, I was early retired, so it was not necessarily my choice. I could have stepped down, but but it was an early retirement. So that that’s good financially that you’re retired rather than laid off. But it really it wasn’t an active decision on my part. In fact, I admire people that proactively make decisions such as the one that I would say I was more led into. But the other part of what went on while I was at Merck, my mom lost her sight to age related macular degeneration. So I’m cited, as you know. But my mom lost her vision in her late 60s, and it was also in the 1990s. I can tell you at the time, I don’t believe I had ever been around somebody who was blind. I doubt that’s completely true, but it’s fair to say I was unaware if I was around them and I really knew nothing about it. She was down in Florida, we were in Pennsylvania, and we moved her from Florida up to Pennsylvania. As I’m sure many of your listeners know, there are a lot of treatments available nowadays for AMD that won’t necessarily cure it, but will defer vision loss. When my mom had the vision loss, there was nothing out there. It was just a matter of what I remember as laser cauterization to to take care of the leaking blood vessels, but nothing that was going to cure it or or maintain her sight. We moved her up. We found an association for the blind, which I considered just good fortune because without the type of internet we have nowadays, we really just stumbled across the resource, right? And they were marvelous.

Ed Henkler: They taught her the skills. They taught her. They visited her apartment. They did vision rehab, all that. And she learned to thrive with vision loss. She became a speaker for the association. She used to take Philly Rapid Transit all over to get to places including the flower show, which is one of the most densely populated events you probably find anywhere. And she actually traveled outside the country for the first time in her life, and it was after she lost sight. So I watched her and I said, obviously, you can thrive with vision loss. It’s something that I think most people fear it. In fact, I’ve asked the question, would you rather lose a limb or lose your sight? And it’s rare that somebody says sight over limb. And then when I actually say she’ll never see your grandchild again, or you never see your spouse. And then they say, oh, well, maybe the limb. So the point is, losing limbs are horrific experience. And yet people would rather have that than the vision loss. And I think it’s I think it’s because they don’t understand. They don’t understand what’s possible. It’s just kind of a mystical area to all of them. And I think that causes a lot of the problems that we’ll probably talk about on the podcast. But anyway, I watched her thrive. I was like, okay, so I see what happens there. So I joined the, the the board of the Association for the Blind as board president for a stint. I spent 13 years with them doing whatever I could to help people. And that was also the period during which I eventually had that early retirement.

Ed Henkler: I tried to go back into biopharma without any success. I would blame that mostly on me and on lack of networking skills, but the bottom line was I wasn’t able to go back in. And then somewhere along the way, in the space of a few weeks, I had multiple people say, you’re always interesting to talk to, but when you talk about blindness, you just come alive. So after hearing that three times in a short period of time, I went home to my wife and I said, I think the universe is yelling at me. I just need to listen. I switched my pitch and I said, I want to help people thrive with vision loss always coming at it from the perspective of a caregiver and a sighted person. I won’t pretend to have walked the same walk as somebody who’s blind, but at least I’ve been around it and I’ve watched it. And that changed my life. I, I joined a startup out of the University of Pennsylvania. We spent five years trying to develop something that maybe is just starting to be available now, which is Beacon Indoor Navigation. Still an imperfect solution, but we spent five years. We didn’t, unfortunately, succeed, maybe a little bit too early on the technology curve, but then I got involved in helping other Companies developing assistive technology for the blind. And I can say, while the compensation is not nearly what I had before, for the first time in my life, I’m truly passionate about and I love what I do. And I love the ability to impact people’s lives directly, which was never a part of my earlier careers.

Donna J. Jodhan, LLB, ACSP, MBA: And I can hear it in your voice, I really can. Yeah. What’s the origin story behind the blind guy? What? You know what? What? What’s it with the name? And what problem were you determined to solve when you launched it?

Ed Henkler: It started really with just needing an LLC. I, I had never worked alone. I had always been part of a large institution. And so it became apparent I needed an LLC for my consulting for anything else that I did. And we looked a lot at names, the idea. And I said, as I mentioned to you before, I view my role in part as focused on caregivers, but also helping people who are blind thrive. And I know we come back to that also in a little bit, but the idea of being a guide to somebody who’s blind just seemed to make sense to me. And then we actually chose the logo to emphasize something that I know you’ve talked about before, and that is the the guide needs to provide an arm for the person who’s blind to hold, as opposed to grabbing their arm. My mom had a lot of discussions with me on that. She used to get so frustrated, and I would always take that viewpoint that I know it’s frustrating. Realize the person is really just trying to help you. They just don’t understand the right way to do it. And I understand from your perspective. You’re just tired of it happening and it’s frightening and it’s scary and it makes you feel you’re going to trip, right.

Ed Henkler: But just try to remember they’re doing it. They’re doing it for the right reasons. They’re doing the wrong thing, but they’re doing it for the right reasons. So it comes back to that idea of guiding people, helping them on their journey, and the idea that I don’t think it’s enough to survive with blindness. I think it’s possible. I think a lot of people do survive with blindness. They they learn the basic skills. They may seldom leave their apartment, but they can. But they’re not doing what they did before. They’re they’re surviving. And I think it’s an unnecessary restriction. I think it’s absolutely possible to thrive. Thrive has many different interpretations. You could be a Paralympian. You could just be somebody that likes to cook for their friends, who happens to be blind. But it’s thriving in your own way, and it’s not being satisfied to do the minimum in life, but rather to do everything you did before. And maybe due to some new things, I met one woman who learned to surf after after losing her sight.

Donna J. Jodhan, LLB, ACSP, MBA: Oh my.

Ed Henkler: Gosh. And a lot of other stories like that. So I just think so much is possible and we self-limit what is possible. And our caregivers often self not self-limit but limit us because they’re afraid. People would say to me, I mentioned my mom going to the flower show and people say, why aren’t you worried? What if she got hit by a car? And my answer would always be, and I’m going to put a caveat on it. But I would always say I would rather she was hit by a car, going to do something she really wanted to do than sitting safely in her apartment not doing anything. And my caveat is clearly whoever hit her, no matter how much we absolve them of the guilt, their life has changed also. And I don’t. So I don’t say that in a trivial way. I understand that, but the concept is more let the person free. And if it leads to a bad outcome, so be it. At least they’re loving life and thriving while they’re alive, rather than this perceived safety of not going anywhere. And I get you asked the mission. So the mission really is all about that thriving not being satisfied to to to be able to get to the train station or the bus station, maybe get to the food store, but rather going out singing in a chorus, playing golf learning to surf, whatever it may be, whatever your personal area of enjoyment is. But I want to see everybody, if possible, do that because I know that they can, and it’s so much richer a life.

Donna J. Jodhan, LLB, ACSP, MBA: What a wonderful philosophy. You often say, and I quote, choose to thrive. Okay. And talk about quote level. Via. Via. Via. Va are thriving. Okay. How do you distinguish thriving from coping for someone? Adjusting to vision loss. And what does thriving look like day to day?

Ed Henkler: So I, I created a chart that’s available on my website that has six different levels. And the first level, it’s my thriving levels. But the first level is is very basic. It’s ADLs, the activities for daily living, it’s learning O&M and navigation skills. It’s really very, very basic, probably with a caregiver at your side, but just learning how to manage a world without sight or, or at least without the sight that you originally had.

Donna J. Jodhan, LLB, ACSP, MBA: Right.

Ed Henkler: So that’s level one that’s surviving, but I still put it on my thriving level. Level two. Now you’re starting to do a little bit more than you did before. Or maybe you have friends, maybe somebody, a caregiver to you and have them over for dinner. You fix maybe a little bit more of a fancy meal for them just to do something different. Perhaps you’re going out to events, you’re going to see a play. And I always I use the verb see loosely, but I know many people who are blind use it very freely. And there’s a lot that you can enjoy. In fact, I’m going to give you another example with my mom. When my mom was alive, she said, I really want to go see the the Phillies game, the the Philadelphia baseball team. Okay. And I, I would like to say that I said this nicely, but I bet you I didn’t. I said, well, you can’t see. What. Why do you want to go to the game. Yeah, I just I don’t know, I just really want to go. And I said it seems kind of silly to me. You really can’t see. Yeah. But we went back and forth and I finally said, all right, well, we’ll go down to the game. So I grabbed a friend just so we could help maneuver in logistics and everything. And we’re walking into the ballpark, and I thought, I know exactly why she wants to go. It’s the smells. It’s the sound, the crowd. It’s so many other sensory impacts that have nothing to do with vision. And I just it was a learning moment for me because I was viewing her request from that, the standpoint of somebody who sighted and she just wanted to go do something and be be in the middle of that.

Ed Henkler: And with today’s TV technology, most people that see any sporting event live would tell you that you can’t see it nearly as well as you could on your TV at home. But there’s something magic about being in that stadium amongst so many people, cheering for something common. It’s a very enervating experience, so it doesn’t have to be about sports. But the point is that’s probably in that level two, maybe level two three. Range level three. And I say you can personalize these because for somebody these levels are going to look very different. I know a number of Paralympians. They’re they’re level six is setting world records. And you don’t have to do that to thrive at a level six. So it’s very individual at that point, which is why I give the person an opportunity to say, what does it look like for you? I’ve told you my basic levels, but what does it look like for you? You hit level three. I’m going to say, now you’re living the same life you did. And I was always struck when I first went to the Association for the blind with my mom, somebody spoke up and said, you know what, I hate this. He said, yeah, you guys are trying. It’s really nice. And here I am hanging out with a bunch of blind people I don’t know. He said, I want to go with my friends and go do what I did before I lost my sight.

Ed Henkler: And that struck me so powerfully. It’s like I felt we were doing my mom a great favor to take her down there and let her meet other people who are blind. Learn how they were dealing with it, which I think is important. But that wasn’t the end. She wanted to do things with us and do things with her friends, just as she had before she lost her sight. Something that’s absolutely achievable. But maybe we forget about it. And I don’t know if it’s the right time to backtrack on this, but there is an interesting movie that was put together, I guess, a decade or so ago, the Obamas actually got involved in funding it. It was called Crip Camp, and it’s a camp for people with disability. It’s not just about blindness, but disabilities broadly. One of the things that I was struck by as I was watching it is these kids with disabilities are sneaking out at night to go have a beer or maybe two to go find somebody of the opposite gender and, and go beyond having a beer. So in other words, they were doing what kids do in camp. And I thought, you know, back to that being as one of my friends calls me a temporary, temporarily, temporarily able bodied person, a tab. You tend to forget that somebody with disabilities might actually want to do the same things I want to do. You tend to think, well, you know, I we make sure they can get to the store.

Ed Henkler: We make sure they have food. We help them learn to cook their food to be safe. Well, that’s back to surviving. That’s not thriving. That’s not the lifestyle anybody dreams of. So it’s this idea, let’s get it back to where you’re doing exactly what you did before you did. You lost your sight. Now maybe you do it differently. Maybe you look for things that are more audio focused than visual focused, all sorts of things like that. But but you’re still basically you’re with the same friends, doing the same activities you had before. Level four is maybe that woman that learned to surf. Now, she didn’t know how to snow ski, but she learned how to water ski. So that was definitely a step up from where she had been. But now you’re learning new skills. You’re not just doing what you did before, you’re doing what any we’ll call that normal person does, which is learn new things, see something new you want to do, learn how to do it. So level four is when you’re doing that, level five and six are for anybody that really wants to push way beyond that. But it’s people that I see that mountain climb. You have the the gentleman who’s blind, who teaches people to mountain bike, all all these really crazy things. You don’t necessarily have to do something at that extreme. But the point is you just you’re now getting up to doing activities that most people sighted or blind, don’t do, and therefore you’re living as full a life as you would have with or without sight. Right.

Donna J. Jodhan, LLB, ACSP, MBA: Very interesting. You know, I am an ice skater. And, you know, people would often ask, well, why do you choose to do something like ice skating? I said, it’s not just about moving around on the ice. It’s it’s the smell of the rink, the fresh air on, you know, whipping across my cheeks or through my hair. So I can really empathize with your mom in that way, you know? Wonderful.

Ed Henkler: I think it’s just so important. And I mentioned this before. I think a lot of people limit themselves. They just. Yeah, I lost my sight. I just I don’t get to do that anymore. I can’t do that. Yeah. But I also I have a post that talks about caretaker versus caregiver. And I think it’s an important distinction. You need a caretaker when you first lose your sight, you need somebody protecting you from every possible bad thing that could happen to you. But as you become comfortable with vision loss, then you need a caregiver. You need somebody there to help you with the things that you need help with. You don’t need somebody protecting you and putting you in a bubble. It’s the wrong thing to do. It’s a very it’s a crippling thing to do to somebody. So figuring all that out is important. And I love that. There’s I talked a lot about a lot with my mom about this, but the concept of bartering and it can take so many different forms. Let’s say you don’t have a whole lot of money. Could you find and this is becomes a very specific example, but it’s the concept. If you’re blind, can you find somebody that’s mobility impaired? And you’re blind and now you connect on the phone, you get to the store because you have no trouble getting to the store, maybe with a cab or an Uber or whatever it may be, but you get to the store and the person who is mobility impaired contacts you on the phone and tells you what’s in front of you.

Ed Henkler: They become be my eyes if you want to put in a personalized way. Right. A very specific example. But the idea is be creative. I mentor a young man who is amazing. He’s been blind almost since birth. Got a full scholarship to Princeton. He now works in international tax. He’s been promoted several times, but he and I have a very candid relationship. And I’ll ask him, so what do you not do well at work? And he’ll tell me something that maybe is familiar to you. Don? He goes, I have trouble with tables. Excel tables just they just aren’t very accessible. The nice thing is there’s a group called Inner Search that is working to change that. But the point is, until recently, and maybe still tables, of course maps, different things like that just aren’t very accessible. I said, see, I’m sure you can find workarounds. You can find ways to do this work. You’ll probably never, at least with today’s solutions, do it as effectively that somebody is sighted. So what you need to do is find somebody who sighted. Maybe they help you with the tables, but that’s kind of grunt work. It’s not. It’s not the work that fires our imagination or our brains, but it has to be done.

Ed Henkler: So ask them to do the tables for you, but then find something they have to do. That’s grunt work and trade off. Back to the bartering. So each of you is doing something that’s maybe a little bit distasteful, but now it’s playing to your skills rather than your weaknesses. And so it’s the probably the best example I know of bartering. There’s a woman in Vermont. She was a professor at the University of Vermont and lost her eyesight in the space of an hour or two during due to an anesthesia mistake on a kind of an awful situation. But she went she was put under with the anesthesia cited, and two hours later the surgery was done and her sight was completely gone. Oh gosh. Within one year she was back teaching at the University of Vermont, teaching accounting. So obviously she figured that part out. But she loved to travel and go on vacations, and she had reasonable wealth, maybe not even wealth, but she had enough money to to do things. So if she wanted to go somewhere on vacation, she’d find a friend and pay for their vacation to go with her. So that kind of took care of the unfamiliarity of a place while giving something to the other person. So I think you can go anywhere with this bartering concept, but it’s just do what makes sense.

Ed Henkler: Don’t be stubborn. That’s what I was trying to teach the person that I mentor. You’re being stubborn. If you do something you’re never going to do more effectively than maybe 40%. It’s not helping your company. It’s really not helping you. So just figure out the right things, the right trade offs, and make sure it’s balanced. It has to be balanced, but make sure it’s fair to everybody. A lesser example, of course, is taking somebody out to dinner. That is your the person that picks you up to take you to the supermarket or buy the groceries one day. There’s just a lot of ways to do it, but you can’t do everything yourself. It’s naive, I think I shouldn’t say it that way. I think I know people who are blind who seem able to do absolutely anything. But I’m going to say they’re probably not as efficient as some of the tasks as they might be. Just because. Because you can’t be. And that’s back to the trade offs. Then just make sure do it in a way that makes sense for everybody. And one of the things you always hear is that people companionship may be the most important gift you can give somebody. So the person’s being your companion when they take you shopping, be their companion, take them out to dinner or fix dinner or whatever the case may be.

Donna J. Jodhan, LLB, ACSP, MBA: Now your site, your website has become a very trusted, trusting, very trusted starting point for people who need to deal with vision loss. Okay. If a family just received a diagnosis, what are the first three steps that you would want them to take, and how can the blind guide support each step?

Ed Henkler: I don’t know if this is going to be the right one, two, three order, but I think they’re all important. First steps. Yeah. Step one is the first important step is this is a loss. Don’t don’t kid yourself. It’s a loss. And you know about the five stages, the seven stages of grief, the different variations on all that. Yeah. You have to realize that you’re going on a journey and it’s not going to be an easy one. And you’re going to go through all the things the anger, the despair, the all the different stages recognize that’s part of it. And you and your caregiver have to recognize that you can’t. If you don’t, it’s probably never going to go, well and everybody takes a different amount of time. You hear people say, you know, you lost your sight six months ago. Come on. At what point are you going to get things together? Well, some people, one of the Paralympians I mentioned lost his sight to an IED. And one year to the day after he lost his sight catastrophically. 100% vision loss. Prosthetic eyes. One year to the day after he lost his sight, he won swimming gold in London at the Paralympics. So. And now he’s completed a PhD, won the Ivy League schools. He’s won, I think, five golds and 2 or 3 silvers over notification. He’s obviously a stunningly capable person who, with what he’s done and he adapted quickly and seems to adapt it absolutely 100%.

Ed Henkler: But other people maybe take more time. You can’t as the caregiver. You can’t let them have forever. By the same token, you can’t push them faster than they’re ready to go. There’s got to be that that trade off. So recognize you’re going through this whole transition and accept it and move forward, but recognize that you’re there. Second, I’m going to say is the choose to thrive because I’ve written my post on I absolutely believe it’s a choice. You can’t be satisfied in my book with surviving. You have to know before this journey is done, I’m going to be doing everything I did before I lost my sight and maybe doing more. And whether you use my six levels of thriving or use something else. Make that choice that I’m not satisfied to sit safely in my house or my apartment. I’m going to get back out there. And the third thing, and I’ve coached so many people in this direction. Find your local association for the blind. They’re going to bring you things. The blind guide. And I cannot bring number one. I’m not an expert with O&M or vision rehab, I understand it. You wouldn’t you wouldn’t engage me to teach the skills, though. I just know an awful lot about a lot of different things at a superficial level. So my site is filled with things that will help somebody thrive.

Ed Henkler: And from cooking utensils to to adaptive sports to employment opportunities to all those things. But you want that local help, local expert help. And when people send me that note, the American Printing House for the blind used to have a great state by state listing of associations for the blind and similar organizations. They’ve kind of stopped doing that, but they still have links that will get you there. And the reason I think it’s important. Number one is, you know, Donna, vision loss is very individual. So one person can see another person can’t. One person adapts is different from somebody else. It’s it’s not maybe as unique as autism and the spectrum, but it’s pretty unique. And what people can see even with the exact same ocular diagnosis, disease diagnosis varies a lot. You want somebody that can look at that. The next thing that association blind can do? Well, the blind can do is assess you for assistive technology. What are your native tech skills? How well do you see? What type of supports are going to make sense for you? Nothing any of us can do remotely is ever going to be the equivalent of that person in in person, helping you and leading you through it. So you have to find that local resource. Don’t don’t get lost. Plus that checks off that block for some social interaction and all the other things.

Donna J. Jodhan, LLB, ACSP, MBA: Drawing on your experience as a caregiver to your mom. What do caregivers most often get wrong and how can they promote independence without overhelping?

Ed Henkler: I think they have a hard time switching from caretaker to her to caregiver, right? My wife and I both were working at the time. We really didn’t have an option to do a whole lot for my mom other than obviously provide support, but we weren’t going to be taking her to all the places she needed to go. You can argue whether or not we could or couldn’t. It doesn’t really matter. We chose that. That just wasn’t going to be part of what we could do. We had two young children at the time. It just it was a choice we made. So You have to. You have to get out of that caretaker role. You have to be there initially. Make sure the person is safe. Some of it the best way in my book to make sure the person is safe is to get them with that association for the blind, because they have people who are well trained in all the things that somebody who’s blind can do and needs to do and how how they do it. And they’re going to tell you when your your loved one is ready and when they’re not. So, and maybe you have a refresher or something like that. So Leaving that caretaker role behind. Accepting the fact that, hey, something bad could happen. There could be an accident. They could burn themselves. But you can’t put them in a bubble. They need to get out of the bubble and live their life the way. And I think the other thing is, there’s a tendency to either not do enough or to do too much.

Ed Henkler: Too much is a caretaker role, but it’s a hard balance in terms of what you should be doing for somebody, how much you should do. I don’t know that this would work for everyone. What I found is when my mom asked me to do something that I knew she could do herself, I would. I would probably way too quickly get irritated. And when she would ask me to do something that I knew, at least in my heart, that I felt she couldn’t do, I didn’t think twice. I had no trouble helping her. And that became my little gauge for is this something I ought to be pushing her on? And some examples I can do. She probably wasn’t great at balancing her checkbook while while cited, and she did not get better when she couldn’t see right. I did all of her bills for her. Now, I know there are plenty of people that are blind that do their own bills. I’m not suggesting you can’t. But she didn’t never learn to use technology. Well, never had a laptop, never had a smartphone. None of those things. The things that often enable somebody to do this type of thing. She just couldn’t do it. And we could either have put her money at risk by forcing her to do something she wasn’t going to do well or or just do it for her. But then she stayed with us for a while and she’d say, I’m ready for lunch now. I said, great. Have fun. She said.

Donna J. Jodhan, LLB, ACSP, MBA: Yes.

Ed Henkler: She said, well, but I don’t know how to work the microwave. I said, well, I’ll show you once, but but you can. You’ve already used it before. You use it in your own house. Well, I know, but it’s easier if you do it. I said, of course it is. But that’s not the point. You can do it too. And you need to do it. And it just became that. It was funny and it was not a conscious. I wasn’t aware of it initially. It was just somewhere along the way I thought, I will bend over backwards doing things that I know she just really can’t do, or just it’s going to be so hard. It’s not worth it. And I just get so frustrated. She she would. Both of us hate making a call and having an awkward interaction with somebody. You know, maybe you’re not happy with a service somebody provided. And she said, oh, I hate making that call. I said, yeah, I do too. Here’s the phone. So it just it became an easy way for me to say, you’re being fair or you’re being unfair. Now, of course, it was my own scale. Maybe I was still being unfair, but I don’t really feel I was. And I, I think you drag yourself down as a caregiver when you start trying to do everything for the person you’re you’re hurting them because you’re making them more and more dependent rather than independent. You’re not thriving when you’re dependent on somebody else and you’re hurting yourself.

Ed Henkler: Because I know a lot of people that end up almost angry with the in the caregiver role, or they get sick or worn down. There are a lot of negative impacts on the caregiver if the if the relationship gets unbalanced. You have to look out for yourself. And I think it’s less true for somebody who’s blind. But I know people who have been caregivers to somebody with with ALS or different mobility impairment diseases and that type of thing. You’ve got to get away. There are a lot of organizations that have kind of respite care arrangement where you can somebody will come in and maybe watch your loved one while you just get the weekend off or get the night off, and I’ll hear people say, oh, it’s my mom. I can’t, can’t let her go. Well, you have to, because if you don’t, you’re going to break down and then nobody’s been helped. Now you need help too, and you can’t help the person that you love. So I think those are the things I would point to for a caregiver. It’s not easy, but it’s not easy on the person that lost their sight. It actually reminds me of one other thing I wanted to say. And you can if you go to my site, you can find a post on this also. But somebody I knew from the Association for the blind actually had lost her sight in her 30s, maybe even a little bit earlier, but she she was recently married and she and her husband were very active.

Ed Henkler: They played racquetball, they traveled, they liked going to concerts and things like that. And she I forget what her vision loss was caused by, but she lost her sight. And of course, everybody’s like, oh, you know, that’s such a shame. How can we help you? And the caregiver at some point kind of got frustrated. Like, you know, my life also changed unalterably when this happened. I can still see I don’t I don’t I won’t dismiss that. But this is my partner for life. And she can’t do, at least right now, the things that we plan to do so. And yet, if I complain about it now, it sounds pretty whiny. Well, you’re still cited. She lost her. She lost her vision. How can you how can you be feeling sorry for yourself? What’s human nature? But both of you are impacted. And I think every caregiver relationship, you have to keep that in mind. There are two parties here. There’s the one that has the loss, the tangible loss, let’s call it. But the other one is loss to us. Whether it’s an extra burden on them or it’s the loss of a spouse that can no longer do the things that you plan to do. So you you have to take care of yourself and recognize that there are two parties and the whole thing.

Donna J. Jodhan, LLB, ACSP, MBA: Very interesting. If I’m a skeptical employer listening today, what’s the business case? Examples, outcomes, even rough costs and returns for hiring someone who’s blind? Which accommodations typically deliver the best ROI?

Ed Henkler: I don’t know that I’m expert in that answer. Donna. What I would say is I think jaws or any screen overlay screen reader typically is what you really need if you have that. And of course, depending on how proprietary the company’s software is, you may have to have some adaptation related to that. But I think once you have that the biggest thing that has to happen is very transitory that the person needs to learn their way around the campus? Probably not. Probably works more effectively if somebody kind of shows them the ropes a little bit and shows them the technology that’s there, how to get it started, or how to call for help if you need to. There are plenty of people that are sighted that struggle with audiovisual technology and have to call the help desk so you can say, oh, I’m blind, I’m being helpless. Well, no, a lot of people have trouble with that. So yeah, I just think the accommodations are trivial in dollar amount and time commitment. So I think where I would focus instead is back to that business ROI you talk about and the the person I mentor, as I said, has been early promoted three times. So his company absolutely has seen that he’s not just equal to other people, he’s better than they are. I tell a lot of people the Walgreens story, the Randy Lewis and Walgreens story, which you may be familiar with, but for any of your readers that haven’t heard it. Randy has a son with intellectual differences, and when his son, I guess, was approaching his 30s, Randy realized my son’s never going to work in meaningful work unless I, as a senior leader, do something to change that.

Ed Henkler: So he was a VP, I think, at the time in distribution for Walgreens, and he committed to hiring 10% people with disabilities. Keep in mind, this is broader than vision loss, but 10% people with disabilities into the distribution area. Before all was said and done, the overall company got up near 10% and distribution was at 33.3%. Wow. And you might perhaps you know why he talked to people that worked on vocational rehab and other things like that, helping somebody with disabilities, and that the general feedback he got was, I think you need two typically abled per person with disabilities to make this work. So they got up to one third, one, one out of three people is a person with disabilities. So that’s that’s a that’s a commendable outcome. But what’s the business or why is that just altruism. That’s where the difference comes in. So Randy measured he he he wasn’t doing this just to be altruistic. He wanted to see and his lost time stats for the for his area with the people with disabilities were better. His retention rates were higher, the productivity was higher. Safety was higher. Every measurable statistic was better. It wasn’t neutral. It was better with the people with disabilities in as part of the team. And one of the things that I think I love most about it, because it’s intangible, it’s not a it’s not a quantifiable observation. But the manager said, you know what? I love coming to work more. These people are so thrilled to have a job.

Ed Henkler: It’s just fun to be at work. They want to be here. They’re working hard. They love it. So I don’t know what that is on a 1 to 10 scale. But the point is they were actually making the workplace more fun. I get then very specific with people who are blind. And as a person who’s blind, Donna, you you could say this better than I ever than I ever will. Probably. But for that person who’s blind, in fact, I’m not going to reference him by name, but a good shared friend you and I have went in for. And he had had a bunch of phone interviews and they loved it. And they called him in for that final in-person interview. And when he walked in they said, oh, you’re blind. Yeah. Why? Because we can’t hire you. He said, well, why not? Why not? You’re blind. And he said, well, so you like me before I got here on my own. I don’t have anybody with me. What? What is it? That. Why can’t you hire me? Right? You can’t. You’re blind and I think I remember that story. To me, it’s it’s so important for somebody that’s blind just to get to the workplace. They’ve already been innovative, creative, patient, all sorts of great adjectives just to get to work. And doesn’t that tell you something? And then I always like the example. And there’s actually a I forget the man’s name, but it’s a true story. I would always say, you know what? I personally like the term differently abled in the US, it’s kind of fallen out of favor, as I understand, at least in Europe, it’s maybe a little better accepted, but I think it says something.

Ed Henkler: So if I’m in a burning building and the power’s going out, man, I want the blind person with me because they can lead me out of the building. Nothing’s changed. I’m helpless because I’m blind and I don’t know how to operate. When I’m blind, they’re blind. That’s how they always operate. And there is somebody again. The name escapes me. But he was in the Twin Towers when the Twin Towers in nine over 11. Yeah. And he went down something like 70 stairs, 70 flights to get out of there. So somebody with disabilities broadly, not just blindness, encounters challenges that most people don’t even consider, they just don’t even think about. And they don’t complain about them. They, they that’s just part of life. I need to figure out how to deal with it and I need to keep going. So I want somebody like that on my team. They’re used to problem solving. They’re used to being creative. And I always liked it because it’s kind of a play on words. But I like to say that person who’s blind is going to see your problem differently than the person who’s sighted. So take advantage of that, take advantage of that, and go back to those managers that love coming to work better. Just because the people had a good attitude. They love love the fact that somebody was giving them a chance to do something that they easily and readily can do, but 70% don’t get a chance to.

Donna J. Jodhan, LLB, ACSP, MBA: The clock is starting to wind down, but I have this question for you.

Ed Henkler: Okay.

Donna J. Jodhan, LLB, ACSP, MBA: Media narratives often shape expectations. You have a page, appeared on podcasts, contributed to Disability Forward Publications, and collaborated with media cooperatives. How do we tell better stories that normalize blindness and set expectations higher?

Ed Henkler: When we take somebody like you who has a great podcast and do that. I think this is a point of contention with me, with the Association for the blind, when I was board president, when they were doing employment programs, they always led. In fact, it was the only point they made. Oh, these poor people deserve a chance.

Donna J. Jodhan, LLB, ACSP, MBA: Oh, yeah. Yeah.

Ed Henkler: And I said, you know, I work at Merck. Merck is not hiring people because they deserve a break. They just aren’t. They’re a for profit company. That’s not how they work. I said, and it’s the wrong pitch, because the right pitch is that there’s a huge business reason to hire somebody with disabilities or somebody who’s blind. There’s a very tangible, measurable business reason to do it. So instead of talking about giving somebody a break, talk about, hey, do you want to strengthen your team? Hey, how’s your retention? You know, do your employees stay? Oh, they’re gone in two years. They said, well, hire that blind person. 70% unemployment. They’re not going in two years unless you’re toxic. And then that’s on you. But if you’re a good environment, they’re not leaving to us because they can’t get another job. And that’s a shame. And it’s wrong, but it’s reality. So they’re going to bring so much to your team. You need to focus on that. And then you can, in kind of an afterthought, say, oh, by the way, it’s altruistic. It’s a nice thing to do for somebody that needs a break. But don’t don’t lead with that. It has to be the positives. And I think it’s just about exposure. When I first went with my mom to the Association for the blind, I found it pretty hard.

Ed Henkler: I was seeing these people with with sometimes very visible blindness, whether it be just a milky eyeball or different things like that. And it was, I don’t want to say horrifying, but I have to admit it was a pretty visceral reaction. Yeah. And the more I interacted with them, they’re no different than me. They just. They can’t see. Oh, well. So the more exposure you have. And that’s the problem with the 70% unemployment rate. Too many people are like I was. They just haven’t interacted with somebody who’s blind. They just don’t understand what’s possible. And I I’m filled with stories, whether it be the Paralympians that we talked about. I know an architect who’s blind. I always like to point that out, that, you know, gee, you’re an architect. That’s a visual task. Yeah. Didn’t stop. We know the mountain biker that I mentioned. So it’s telling these stories of real people that are doing things that most of us probably. I don’t mountain bike. So being able to do it when you’re blind is pretty cool, because as a sighted person, I wouldn’t try to do it. So it’s showing what’s possible. And just getting more exposure. And that that goes hand in hand with creating more employment opportunities.

Ed Henkler: But and the other thing I kind of tease about this wording, I was taught to use person first language, and I, I struggled initially to try to get person who’s blind as opposed to blind person. I finally got it kind of figured out, and I can generally say it pretty easily now. But I laughed because everybody I know who’s blind goes, yeah, see that blind dude over there? It’s just. But I get it. I’m excited. I maybe ought to be a little more respectful, a little, at least a little more sensitive. Not respectful, sensitive to it. So just show, show people the Paralympics really do that. Show people with disabilities doing things that people without disabilities can’t imagine doing. Maybe a final thought if we’re at that point, I think we all have disabilities. Yeah, but I think most of us are call it fortunate enough to fall in the center of the bell curve. So if I use myself as an example, before I had laser eye surgery, I couldn’t see the top layer on the eye chart. I was blind, but I could put glasses on. Then I was 2020, so I had a disability. That was just accommodation that is readily available. I think I’m a bit face blind.

Ed Henkler: I can meet people and I can meet them 3 or 4 times over a week or two, and I still don’t remember the name. I don’t remember the face, don’t recognize it. I don’t think I’m purely face blind the way some people are, but I think it’s a weakness. I also have a lousy sense of direction. My wife, I always tease, has the girl and the guy Gene, because she remembers all the stores and all the road names, but she also remembers everything else. I don’t remember any of it, but I have GPS. Doesn’t matter. I can get along just as just as well as she can, if not better, because the GPS will give me a route that she doesn’t even know exists. So I think most of us have disabilities, and most of us it doesn’t matter because there are accommodations and there are enough of us in that same area that it just doesn’t matter. So recognizing that that there’s not this 90% of the world that has no disabilities and 10% that does, but rather just where are you and how are the accommodations for what’s wrong with you? Not wrong. Wrong way to say it, but I think you know what I mean.

Donna J. Jodhan, LLB, ACSP, MBA: I think what strikes me out of listening to you here is thrive versus survive and caretaker versus caregiver. So in our final moments of our interview here, what words of wisdom would you like to impart on our listeners?

Ed Henkler: I think you just said it, but don’t be satisfied with doing less than you can. And that’s that’s advice to anyone. Most of us are so capable of so much more than we do. As we age, as you have disabilities, as everything else. It’s a big, beautiful world out there. I have as I approach my 70th year, I have so many friends who are sitting in a recliner looking at their iPad, doing nothing else and saying, I’m bored. You know, I used to work. I had a lot to do. I have nothing to do right now. Yeah, I don’t get that because I am still working. Maybe not much longer, but I’m still working. My wife and I have busy, rich schedules, whether it be with our kids and our grandkids, or whether it’s travel or it’s whether DIY in our house or it’s going to play golf or it’s there’s a big, beautiful world out there that you can have a lot of fun with. If you have a lot of wealth, you can you can do a lot of really cool things. If you have no wealth, you can go hike, you can go camp, or you don’t be satisfied with sitting in a chair. You don’t need to unless of course you have to. But assuming you don’t go out there and enjoy this big, wonderful life that is out there and big, wonderful world.

Donna J. Jodhan, LLB, ACSP, MBA: And it has been a pleasure listening to you. And I really think your philosophy is refreshing, recharging and something that everyone should really, really adopt, I mean, I like it. And we gotta be more positive to enjoy what we have. And, you know, stop complaining, but just go forth. So thank you very, very much for being an interviewee on my podcast. And come back anytime, anytime you’d like to spread more of your philosophy. Please do not hesitate to reach out to me. I’d be happy to have you on again.

Ed Henkler: It was my pleasure, Donna, and thank you for everything you’re doing.

Donna J. Jodhan, LLB, ACSP, MBA: Very welcome. Let’s work together now.

Ed Henkler: Sounds perfect.

Donna J. Jodhan, LLB, ACSP, MBA: Take care. And thanks again.

Ed Henkler: Thank you.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Bye. Bye now. Bye.

Podcast Commentator: Donna wants to hear from you and invites you to write to her at donnajodhan@gmail.com. Until next time.

Donna J. Jodhan, LLB, ACSP, MBA
Global Leader In Disability Rights, Digital Accessibility, And Inclusive Policy Reform
Turning policy into progress for people with disabilities.