Latest / Podcasts By Donna Jodhan / Remarkable World Commentary Episode #61: Interview with Ed Henkler, Founder, The Blind Guide

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Remarkable World Commentary Episode #61: Interview with Ed Henkler, Founder, The Blind Guide · Podcasts By Donna Jodhan

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Podcast Commentator: Greetings. Donna J Jodhan, LLB, ACSP and MBA,
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invites you to listen to her biweekly podcast,
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Remarkable World Commentary.
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Here, Donna shares some of her innermost thoughts,
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insights, perspectives, and more with her listeners.
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Donna focuses on topics that directly affect the future of kids,
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especially kids with disabilities.
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Donna is a blind advocate, author, site loss coach,
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dinner mystery producer, writer, entrepreneur,
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law graduate, and podcast commentator.
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She has decades of lived experiences, knowledge,
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skills, and expertise in access technology and information as someone who has been
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internationally recognized for her work and roles,
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she just wants to make things better than possible.
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Donna J. Jodhan, LLB, ACSP, MBA: Hello everybody, and welcome to another episode of Remarkable World Commentary.
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I'm Donna Jodhan, a lifelong disability advocate and one who sees the world mainly
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through sound, touch and a stubborn optimism.
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I am a law graduate, accessibility consultant,
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author, lifelong barrier buster who also happens to be blind.
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You may know me from a few headline moments.
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In November of 2010, I won the Landmark Charter Challenge case that forced the
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Canadian government to make its websites accessible to every Canadian,
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not just to sighted ones.
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And in July of 2019, I co-led the Accessible Canada Act with more than two dozen
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disability groups to turn equal access into federal law and most recently on June the
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3rd, 2022. I was greatly humbled by Her Late Majesty's Platinum Jubilee Award for tireless
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commitment to removing barriers.
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When I'm not in a courtroom or a committee room or a pottery studio,
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you'll find me coaching kids with vision loss,
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producing audio mysteries, or helping tech companies to make their
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gadgets talk back in plain language.
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Everything I do circles.
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One goal to turn accessibility from an afterthought into everyday practice.
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I invite you to think of this show as our shared workbench where policy meets lived
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experience and lived experience sparks fresh ideas.
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Now, before we jump into today's conversation,
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let me shine a quick spotlight on today's guest,
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a change maker whose work is as every bit as remarkable as the world that we are trying to
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build. Ed Henkler, welcome to my podcast.
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Ed Henkler: Thank you so much, Donna.
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It's a pleasure to be here, and I commend you on all the things that
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you've done and continue to do.
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It's such important work and it's good to have somebody that refuses to accept the
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answer. No.
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Donna J. Jodhan, LLB, ACSP, MBA: And I am so happy that you are on our side of the fence.
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So, editor, I'd love to start with your inflection point after the US Navy
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and two decades of work.
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Right. What led you to retire early and to reimagine your career around accessibility?
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Ed Henkler: Donna, I'd love to tell you that it was an active decision by me,
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but I think the truth is it's probably I've been more passive in my career.
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So I'll back up just for a second.
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As you said, I spent ten years in the nuclear power Navy.
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I'm proud of it, but my family didn't have any particular veteran history.
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So while I'm proud of it, I can't necessarily say I was passionate
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about it. Right. And then when I joined Merck,
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I really had no connection to biopharma.
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But it was a good school or a good good company,
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and it paid well. And I had skills that were well suited to the environment.
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So I spent 31 years of my life, as I tell people,
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doing things of which I was proud but probably never passionate.
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Donna J. Jodhan, LLB, ACSP, MBA: Okay.
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Ed Henkler: And then, age 52, I was early retired, so it was not necessarily my choice.
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I could have stepped down, but but it was an early retirement.
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So that that's good financially that you're retired rather than laid off.
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But it really it wasn't an active decision on my part.
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In fact, I admire people that proactively make decisions such as the one that I would
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say I was more led into.
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But the other part of what went on while I was at Merck,
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my mom lost her sight to age related macular degeneration.
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So I'm cited, as you know.
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But my mom lost her vision in her late 60s, and it was also in the 1990s.
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I can tell you at the time, I don't believe I had ever been around
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somebody who was blind.
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I doubt that's completely true, but it's fair to say I was unaware if I was
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around them and I really knew nothing about it.
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She was down in Florida, we were in Pennsylvania,
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and we moved her from Florida up to Pennsylvania.
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As I'm sure many of your listeners know, there are a lot of treatments available
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nowadays for AMD that won't necessarily cure it,
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but will defer vision loss.
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When my mom had the vision loss, there was nothing out there. It was just a
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matter of what I remember as laser cauterization to to take care of the leaking
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blood vessels, but nothing that was going to cure it or or maintain her sight.
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We moved her up. We found an association for the blind,
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which I considered just good fortune because without the type of internet we have
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nowadays, we really just stumbled across the resource,
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right? And they were marvelous.
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They taught her the skills.
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They taught her. They visited her apartment.
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They did vision rehab, all that.
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And she learned to thrive with vision loss.
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She became a speaker for the association.
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She used to take Philly Rapid Transit all over to get to places including the flower
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show, which is one of the most densely populated events you probably find anywhere.
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And she actually traveled outside the country for the first time in her life,
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and it was after she lost sight.
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So I watched her and I said, obviously, you can thrive with vision loss.
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It's something that I think most people fear it.
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In fact, I've asked the question, would you rather lose a limb or lose your
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sight? And it's rare that somebody says sight over limb.
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And then when I actually say she'll never see your grandchild again,
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or you never see your spouse.
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And then they say, oh, well, maybe the limb.
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So the point is, losing limbs are horrific experience.
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And yet people would rather have that than the vision loss.
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And I think it's I think it's because they don't understand.
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They don't understand what's possible.
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It's just kind of a mystical area to all of them.
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And I think that causes a lot of the problems that we'll probably talk about on the
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podcast. But anyway, I watched her thrive.
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I was like, okay, so I see what happens there.
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So I joined the, the the board of the Association for the Blind as board president
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for a stint. I spent 13 years with them doing whatever I could to help people.
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And that was also the period during which I eventually had that early retirement.
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I tried to go back into biopharma without any success.
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I would blame that mostly on me and on lack of networking skills,
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but the bottom line was I wasn't able to go back in.
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And then somewhere along the way, in the space of a few weeks,
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I had multiple people say, you're always interesting to talk to,
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but when you talk about blindness, you just come alive.
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So after hearing that three times in a short period of time,
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I went home to my wife and I said, I think the universe is yelling at me.
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I just need to listen.
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I switched my pitch and I said, I want to help people thrive with vision loss
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always coming at it from the perspective of a caregiver and a sighted person.
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I won't pretend to have walked the same walk as somebody who's blind,
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but at least I've been around it and I've watched it.
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And that changed my life.
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I, I joined a startup out of the University of Pennsylvania.
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We spent five years trying to develop something that maybe is just starting to be
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available now, which is Beacon Indoor Navigation.
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Still an imperfect solution, but we spent five years.
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We didn't, unfortunately, succeed, maybe a little bit too early on the
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technology curve, but then I got involved in helping other Companies developing assistive
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technology for the blind.
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And I can say, while the compensation is not nearly what I had before,
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for the first time in my life, I'm truly passionate about and I love what I
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do. And I love the ability to impact people's lives directly,
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which was never a part of my earlier careers.
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Donna J. Jodhan, LLB, ACSP, MBA: And I can hear it in your voice, I really can.
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Yeah. What's the origin story behind the blind guy?
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What? You know what? What?
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What's it with the name?
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And what problem were you determined to solve when you launched it?
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Ed Henkler: It started really with just needing an LLC.
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I, I had never worked alone.
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I had always been part of a large institution.
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And so it became apparent I needed an LLC for my consulting for anything else that I did.
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And we looked a lot at names, the idea.
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And I said, as I mentioned to you before, I view my role in part as focused on
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caregivers, but also helping people who are blind thrive.
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And I know we come back to that also in a little bit,
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but the idea of being a guide to somebody who's blind just seemed to make sense to me.
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And then we actually chose the logo to emphasize something that I know you've talked
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about before, and that is the the guide needs to provide an arm for the person who's blind
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to hold, as opposed to grabbing their arm.
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My mom had a lot of discussions with me on that.
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She used to get so frustrated, and I would always take that viewpoint that I
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know it's frustrating.
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Realize the person is really just trying to help you.
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They just don't understand the right way to do it.
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And I understand from your perspective. You're just tired of it happening and it's
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frightening and it's scary and it makes you feel you're going to trip,
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right. But just try to remember they're doing it.
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They're doing it for the right reasons. They're doing the wrong thing, but they're
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doing it for the right reasons.
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So it comes back to that idea of guiding people,
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helping them on their journey, and the idea that I don't think it's enough
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to survive with blindness.
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I think it's possible. I think a lot of people do survive with blindness.
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They they learn the basic skills.
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They may seldom leave their apartment, but they can.
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But they're not doing what they did before.
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They're they're surviving.
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And I think it's an unnecessary restriction.
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I think it's absolutely possible to thrive.
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Thrive has many different interpretations.
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You could be a Paralympian.
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You could just be somebody that likes to cook for their friends, who happens to be blind.
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But it's thriving in your own way, and it's not being satisfied to do the
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minimum in life, but rather to do everything you did before.
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And maybe due to some new things, I met one woman who learned to surf after
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after losing her sight.
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Donna J. Jodhan, LLB, ACSP, MBA: Oh my.
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Ed Henkler: Gosh. And a lot of other stories like that.
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So I just think so much is possible and we self-limit what is possible.
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And our caregivers often self not self-limit but limit us because they're afraid.
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People would say to me, I mentioned my mom going to the flower show
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and people say, why aren't you worried? What if she got hit by a car?
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And my answer would always be, and I'm going to put a caveat on it. But I
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would always say I would rather she was hit by a car,
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going to do something she really wanted to do than sitting safely in her apartment not
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doing anything. And my caveat is clearly whoever hit her,
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no matter how much we absolve them of the guilt,
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their life has changed also.
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And I don't. So I don't say that in a trivial way.
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I understand that, but the concept is more let the person free.
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And if it leads to a bad outcome, so be it.
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At least they're loving life and thriving while they're alive,
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rather than this perceived safety of not going anywhere.
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And I get you asked the mission.
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So the mission really is all about that thriving not being satisfied to to to be able
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to get to the train station or the bus station,
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maybe get to the food store, but rather going out singing in a chorus,
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playing golf learning to surf, whatever it may be,
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whatever your personal area of enjoyment is.
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But I want to see everybody, if possible, do that because I know that they
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can, and it's so much richer a life.
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Donna J. Jodhan, LLB, ACSP, MBA: What a wonderful philosophy.
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You often say, and I quote, choose to thrive.
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Okay. And talk about quote level.
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Via. Via. Via. Va are thriving.
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Okay. How do you distinguish thriving from coping for someone?
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Adjusting to vision loss.
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And what does thriving look like day to day?
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Ed Henkler: So I, I created a chart that's available on my website that has six different levels.
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And the first level, it's my thriving levels.
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But the first level is is very basic.
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It's ADLs, the activities for daily living, it's learning O&M and navigation skills.
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It's really very, very basic, probably with a caregiver at your side,
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but just learning how to manage a world without sight or,
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or at least without the sight that you originally had.
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Donna J. Jodhan, LLB, ACSP, MBA: Right.
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Ed Henkler: So that's level one that's surviving, but I still put it on my thriving level.
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Level two. Now you're starting to do a little bit more than you did before.
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Or maybe you have friends, maybe somebody, a caregiver to you and have
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them over for dinner. You fix maybe a little bit more of a fancy meal for them just to do
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something different. Perhaps you're going out to events,
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you're going to see a play.
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And I always I use the verb see loosely, but I know many people who are blind use it
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very freely. And there's a lot that you can enjoy.
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In fact, I'm going to give you another example with my mom.
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When my mom was alive, she said, I really want to go see the the
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Phillies game, the the Philadelphia baseball team.
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Okay. And I, I would like to say that I said this nicely,
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but I bet you I didn't.
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I said, well, you can't see.
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What. Why do you want to go to the game.
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Yeah, I just I don't know, I just really want to go.
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And I said it seems kind of silly to me.
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You really can't see. Yeah.
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But we went back and forth and I finally said,
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all right, well, we'll go down to the game.
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So I grabbed a friend just so we could help maneuver in logistics and everything.
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And we're walking into the ballpark, and I thought,
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I know exactly why she wants to go.
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It's the smells. It's the sound, the crowd.
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It's so many other sensory impacts that have nothing to do with vision.
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And I just it was a learning moment for me because I was viewing her request from that,
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the standpoint of somebody who sighted and she just wanted to go do something and be be
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in the middle of that. And with today's TV technology,
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most people that see any sporting event live would tell you that you can't see it nearly
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as well as you could on your TV at home.
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But there's something magic about being in that stadium amongst so many people,
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cheering for something common.
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It's a very enervating experience, so it doesn't have to be about sports.
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But the point is that's probably in that level two,
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maybe level two three.
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Range level three. And I say you can personalize these because for somebody these
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levels are going to look very different. I know a number of Paralympians.
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They're they're level six is setting world records.
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And you don't have to do that to thrive at a level six.
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So it's very individual at that point, which is why I give the person an opportunity
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to say, what does it look like for you?
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I've told you my basic levels, but what does it look like for you?
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You hit level three. I'm going to say, now you're living the same life you did.
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And I was always struck when I first went to the Association for the blind with my mom,
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somebody spoke up and said, you know what, I hate this.
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He said, yeah, you guys are trying.
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It's really nice. And here I am hanging out with a bunch of blind people I don't know.
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He said, I want to go with my friends and go do what I did before I lost my sight.
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And that struck me so powerfully.
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It's like I felt we were doing my mom a great favor to take her down there and let her meet
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other people who are blind. Learn how they were dealing with it, which I think is
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important. But that wasn't the end.
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She wanted to do things with us and do things with her friends,
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just as she had before she lost her sight.
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Something that's absolutely achievable.
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But maybe we forget about it.
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And I don't know if it's the right time to backtrack on this,
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but there is an interesting movie that was put together,
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I guess, a decade or so ago, the Obamas actually got involved in funding
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it. It was called Crip Camp, and it's a camp for people with disability.
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It's not just about blindness, but disabilities broadly.
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One of the things that I was struck by as I was watching it is these kids with
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disabilities are sneaking out at night to go have a beer or maybe two to go find somebody
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of the opposite gender and, and go beyond having a beer.
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So in other words, they were doing what kids do in camp.
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And I thought, you know, back to that being as one of my friends calls
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me a temporary, temporarily, temporarily able bodied person,
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a tab. You tend to forget that somebody with disabilities might actually want to do the
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same things I want to do. You tend to think, well, you know, I we make sure they can get
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to the store. We make sure they have food.
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We help them learn to cook their food to be safe.
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Well, that's back to surviving.
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That's not thriving. That's not the lifestyle anybody dreams of.
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So it's this idea, let's get it back to where you're doing exactly what you did before you
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did. You lost your sight.
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Now maybe you do it differently.
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Maybe you look for things that are more audio focused than visual focused,
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all sorts of things like that.
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But but you're still basically you're with the same friends,
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doing the same activities you had before.
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Level four is maybe that woman that learned to surf.
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Now, she didn't know how to snow ski, but she learned how to water ski.
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So that was definitely a step up from where she had been.
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But now you're learning new skills.
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You're not just doing what you did before, you're doing what any we'll call that normal
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person does, which is learn new things, see something new you want to do,
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learn how to do it. So level four is when you're doing that,
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level five and six are for anybody that really wants to push way beyond that.
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But it's people that I see that mountain climb.
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You have the the gentleman who's blind, who teaches people to mountain bike,
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all all these really crazy things.
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You don't necessarily have to do something at that extreme.
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But the point is you just you're now getting up to doing activities that most people
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sighted or blind, don't do, and therefore you're living as full a life as
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you would have with or without sight.
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Right.
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Donna J. Jodhan, LLB, ACSP, MBA: Very interesting. You know, I am an ice skater.
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And, you know, people would often ask, well,
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why do you choose to do something like ice skating?
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I said, it's not just about moving around on the ice.
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It's it's the smell of the rink, the fresh air on,
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you know, whipping across my cheeks or through my hair.
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So I can really empathize with your mom in that way,
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you know? Wonderful.
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Ed Henkler: I think it's just so important.
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And I mentioned this before.
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I think a lot of people limit themselves.
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They just. Yeah, I lost my sight.
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I just I don't get to do that anymore.
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I can't do that. Yeah.
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But I also I have a post that talks about caretaker versus caregiver.
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And I think it's an important distinction.
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You need a caretaker when you first lose your sight,
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you need somebody protecting you from every possible bad thing that could happen to you.
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But as you become comfortable with vision loss,
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then you need a caregiver. You need somebody there to help you with the things that you
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need help with. You don't need somebody protecting you and putting you in a bubble.
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It's the wrong thing to do.
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It's a very it's a crippling thing to do to somebody.
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So figuring all that out is important.
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And I love that. There's I talked a lot about a lot with my mom about this,
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but the concept of bartering and it can take so many different forms.
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Let's say you don't have a whole lot of money.
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Could you find and this is becomes a very specific example,
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but it's the concept. If you're blind, can you find somebody that's mobility
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impaired? And you're blind and now you connect on the phone,
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you get to the store because you have no trouble getting to the store,
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maybe with a cab or an Uber or whatever it may be,
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but you get to the store and the person who is mobility impaired contacts you on the
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phone and tells you what's in front of you.
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They become be my eyes if you want to put in a personalized way.
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Right. A very specific example.
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But the idea is be creative.
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I mentor a young man who is amazing.
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He's been blind almost since birth.
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Got a full scholarship to Princeton.
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He now works in international tax.
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He's been promoted several times, but he and I have a very candid relationship.
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And I'll ask him, so what do you not do well at work?
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And he'll tell me something that maybe is familiar to you.
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Don? He goes, I have trouble with tables.
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Excel tables just they just aren't very accessible.
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The nice thing is there's a group called Inner Search that is working to change that.
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But the point is, until recently, and maybe still tables,
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of course maps, different things like that just aren't very accessible.
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I said, see, I'm sure you can find workarounds.
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You can find ways to do this work.
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You'll probably never, at least with today's solutions,
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do it as effectively that somebody is sighted.
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So what you need to do is find somebody who sighted.
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Maybe they help you with the tables, but that's kind of grunt work. It's not.
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It's not the work that fires our imagination or our brains,
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but it has to be done.
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So ask them to do the tables for you, but then find something they have to do.
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That's grunt work and trade off.
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Back to the bartering. So each of you is doing something that's maybe a little bit
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distasteful, but now it's playing to your skills rather than your weaknesses.
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And so it's the probably the best example I know of bartering.
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There's a woman in Vermont.
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She was a professor at the University of Vermont and lost her eyesight in the space of
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an hour or two during due to an anesthesia mistake on a kind of an awful situation.
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But she went she was put under with the anesthesia cited,
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and two hours later the surgery was done and her sight was completely gone.
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Oh gosh. Within one year she was back teaching at the University of Vermont,
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teaching accounting. So obviously she figured that part out.
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But she loved to travel and go on vacations, and she had reasonable wealth,
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maybe not even wealth, but she had enough money to to do things.
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So if she wanted to go somewhere on vacation,
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she'd find a friend and pay for their vacation to go with her.
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So that kind of took care of the unfamiliarity of a place while giving
25:23
something to the other person. So I think you can go anywhere with this bartering concept,
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but it's just do what makes sense.
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Don't be stubborn. That's what I was trying to teach the person that I mentor.
25:35
You're being stubborn. If you do something you're never going to do more effectively
25:38
than maybe 40%. It's not helping your company.
25:41
It's really not helping you.
25:43
So just figure out the right things, the right trade offs, and make sure it's
25:47
balanced. It has to be balanced, but make sure it's fair to everybody.
25:52
A lesser example, of course, is taking somebody out to dinner.
25:54
That is your the person that picks you up to take you to the supermarket or buy the
25:59
groceries one day. There's just a lot of ways to do it,
26:03
but you can't do everything yourself.
26:05
It's naive, I think I shouldn't say it that way.
26:08
I think I know people who are blind who seem able to do absolutely anything.
26:14
But I'm going to say they're probably not as efficient as some of the tasks as they might
26:18
be. Just because. Because you can't be.
26:22
And that's back to the trade offs. Then just make sure do it in a way that makes sense for
26:26
everybody. And one of the things you always hear is that people companionship may be the
26:31
most important gift you can give somebody.
26:34
So the person's being your companion when they take you shopping,
26:38
be their companion, take them out to dinner or fix dinner or whatever the case may be.
26:46
Donna J. Jodhan, LLB, ACSP, MBA: Now your site, your website has become a very trusted,
26:51
trusting, very trusted starting point for people who need to deal with vision loss.
26:58
Okay. If a family just received a diagnosis, what are the first three steps that you would
27:07
want them to take, and how can the blind guide support each step?
27:19
Ed Henkler: I don't know if this is going to be the right one, two, three order, but I think they're
27:21
all important. First steps.
27:23
Yeah. Step one is the first important step is this is a loss.
27:30
Don't don't kid yourself. It's a loss.
27:31
And you know about the five stages, the seven stages of grief,
27:35
the different variations on all that.
27:38
Yeah. You have to realize that you're going on a journey and it's not going to be an easy
27:43
one. And you're going to go through all the things the anger, the despair, the all the
27:48
different stages recognize that's part of it.
27:51
And you and your caregiver have to recognize that you can't.
27:56
If you don't, it's probably never going to go,
27:59
well and everybody takes a different amount of time.
28:03
You hear people say, you know, you lost your sight six months ago.
28:07
Come on. At what point are you going to get things together? Well,
28:10
some people, one of the Paralympians I mentioned lost his sight to an IED.
28:15
And one year to the day after he lost his sight catastrophically.
28:20
100% vision loss. Prosthetic eyes.
28:23
One year to the day after he lost his sight, he won swimming gold in London at the
28:28
Paralympics. So. And now he's completed a PhD,
28:33
won the Ivy League schools.
28:35
He's won, I think, five golds and 2 or 3 silvers over notification.
28:40
He's obviously a stunningly capable person who,
28:44
with what he's done and he adapted quickly and seems to adapt it absolutely 100%.
28:50
But other people maybe take more time.
28:52
You can't as the caregiver.
28:54
You can't let them have forever.
28:56
By the same token, you can't push them faster than they're ready to go.
28:59
There's got to be that that trade off.
29:02
So recognize you're going through this whole transition and accept it and move forward,
29:08
but recognize that you're there.
29:10
Second, I'm going to say is the choose to thrive because I've written my post on I
29:16
absolutely believe it's a choice.
29:18
You can't be satisfied in my book with surviving.
29:22
You have to know before this journey is done,
29:25
I'm going to be doing everything I did before I lost my sight and maybe doing more.
29:29
And whether you use my six levels of thriving or use something else.
29:33
Make that choice that I'm not satisfied to sit safely in my house or my apartment.
29:39
I'm going to get back out there.
29:41
And the third thing, and I've coached so many people in this direction.
29:46
Find your local association for the blind.
29:49
They're going to bring you things. The blind guide. And I cannot bring number one.
29:52
I'm not an expert with O&M or vision rehab, I understand it.
29:56
You wouldn't you wouldn't engage me to teach the skills,
29:59
though. I just know an awful lot about a lot of different things at a superficial level.
30:05
So my site is filled with things that will help somebody thrive.
30:09
And from cooking utensils to to adaptive sports to employment opportunities to all
30:16
those things. But you want that local help, local expert help.
30:21
And when people send me that note, the American Printing House for the blind
30:25
used to have a great state by state listing of associations for the blind and similar
30:30
organizations. They've kind of stopped doing that,
30:32
but they still have links that will get you there.
30:35
And the reason I think it's important. Number one is,
30:38
you know, Donna, vision loss is very individual.
30:42
So one person can see another person can't.
30:44
One person adapts is different from somebody else.
30:47
It's it's not maybe as unique as autism and the spectrum,
30:52
but it's pretty unique.
30:53
And what people can see even with the exact same ocular diagnosis,
30:57
disease diagnosis varies a lot.
31:00
You want somebody that can look at that.
31:01
The next thing that association blind can do?
31:04
Well, the blind can do is assess you for assistive technology.
31:08
What are your native tech skills?
31:10
How well do you see? What type of supports are going to make sense for you?
31:15
Nothing any of us can do remotely is ever going to be the equivalent of that person in
31:20
in person, helping you and leading you through it.
31:24
So you have to find that local resource.
31:26
Don't don't get lost. Plus that checks off that block for some social interaction and
31:32
all the other things.
31:36
Donna J. Jodhan, LLB, ACSP, MBA: Drawing on your experience as a caregiver to your mom.
31:42
What do caregivers most often get wrong and how can they promote independence without
31:52
overhelping?
31:56
Ed Henkler: I think they have a hard time switching from caretaker to her to caregiver,
32:00
right? My wife and I both were working at the time.
32:03
We really didn't have an option to do a whole lot for my mom other than obviously provide
32:07
support, but we weren't going to be taking her to all the places she needed to go.
32:12
You can argue whether or not we could or couldn't.
32:14
It doesn't really matter.
32:15
We chose that. That just wasn't going to be part of what we could do.
32:18
We had two young children at the time.
32:21
It just it was a choice we made.
32:24
So You have to. You have to get out of that caretaker role.
32:31
You have to be there initially.
32:33
Make sure the person is safe.
32:34
Some of it the best way in my book to make sure the person is safe is to get them with
32:39
that association for the blind, because they have people who are well trained
32:42
in all the things that somebody who's blind can do and needs to do and how how they do
32:47
it. And they're going to tell you when your your loved one is ready and when they're not.
32:52
So, and maybe you have a refresher or something like that.
32:55
So Leaving that caretaker role behind.
33:00
Accepting the fact that, hey, something bad could happen.
33:03
There could be an accident. They could burn themselves.
33:06
But you can't put them in a bubble.
33:08
They need to get out of the bubble and live their life the way.
33:13
And I think the other thing is, there's a tendency to either not do enough or
33:18
to do too much. Too much is a caretaker role,
33:21
but it's a hard balance in terms of what you should be doing for somebody,
33:25
how much you should do.
33:27
I don't know that this would work for everyone.
33:30
What I found is when my mom asked me to do something that I knew she could do herself,
33:35
I would. I would probably way too quickly get irritated.
33:39
And when she would ask me to do something that I knew,
33:42
at least in my heart, that I felt she couldn't do,
33:45
I didn't think twice. I had no trouble helping her.
33:48
And that became my little gauge for is this something I ought to be pushing her on?
33:53
And some examples I can do.
33:55
She probably wasn't great at balancing her checkbook while while cited,
34:00
and she did not get better when she couldn't see right.
34:03
I did all of her bills for her.
34:05
Now, I know there are plenty of people that are blind that do their own bills. I'm not
34:08
suggesting you can't. But she didn't never learn to use technology.
34:11
Well, never had a laptop, never had a smartphone.
34:15
None of those things. The things that often enable somebody to do this type of thing.
34:20
She just couldn't do it.
34:21
And we could either have put her money at risk by forcing her to do something she
34:26
wasn't going to do well or or just do it for her.
34:31
But then she stayed with us for a while and she'd say,
34:34
I'm ready for lunch now.
34:35
I said, great. Have fun.
34:38
She said.
34:40
Donna J. Jodhan, LLB, ACSP, MBA: Yes.
34:40
Ed Henkler: She said, well, but I don't know how to work the microwave.
34:43
I said, well, I'll show you once, but but you can.
34:47
You've already used it before.
34:49
You use it in your own house.
34:50
Well, I know, but it's easier if you do it.
34:52
I said, of course it is. But that's not the point.
34:55
You can do it too. And you need to do it.
34:58
And it just became that.
35:00
It was funny and it was not a conscious.
35:03
I wasn't aware of it initially.
35:05
It was just somewhere along the way I thought, I will bend over backwards doing
35:10
things that I know she just really can't do, or just it's going to be so hard.
35:14
It's not worth it. And I just get so frustrated.
35:18
She she would. Both of us hate making a call and having an awkward interaction with
35:24
somebody. You know, maybe you're not happy with a service somebody provided. And she
35:28
said, oh, I hate making that call.
35:30
I said, yeah, I do too.
35:32
Here's the phone. So it just it became an easy way for me to say,
35:38
you're being fair or you're being unfair.
35:40
Now, of course, it was my own scale.
35:42
Maybe I was still being unfair, but I don't really feel I was.
35:45
And I, I think you drag yourself down as a caregiver when you start trying to do
35:50
everything for the person you're you're hurting them because you're making them more
35:55
and more dependent rather than independent.
35:58
You're not thriving when you're dependent on somebody else and you're hurting yourself.
36:02
Because I know a lot of people that end up almost angry with the in the caregiver role,
36:08
or they get sick or worn down.
36:12
There are a lot of negative impacts on the caregiver if the if the relationship gets
36:17
unbalanced. You have to look out for yourself.
36:21
And I think it's less true for somebody who's blind.
36:23
But I know people who have been caregivers to somebody with with ALS or different mobility
36:29
impairment diseases and that type of thing.
36:32
You've got to get away.
36:34
There are a lot of organizations that have kind of respite care arrangement where you
36:38
can somebody will come in and maybe watch your loved one while you just get the weekend
36:43
off or get the night off, and I'll hear people say,
36:46
oh, it's my mom. I can't, can't let her go.
36:48
Well, you have to, because if you don't, you're going to break down and then nobody's
36:53
been helped. Now you need help too, and you can't help the person that you love.
36:56
So I think those are the things I would point to for a caregiver.
37:01
It's not easy, but it's not easy on the person that lost their sight.
37:04
It actually reminds me of one other thing I wanted to say.
37:07
And you can if you go to my site, you can find a post on this also.
37:11
But somebody I knew from the Association for the blind actually had lost her sight in her
37:17
30s, maybe even a little bit earlier, but she she was recently married and she and
37:23
her husband were very active.
37:25
They played racquetball, they traveled, they liked going to concerts
37:29
and things like that. And she I forget what her vision loss was caused by,
37:33
but she lost her sight.
37:35
And of course, everybody's like, oh, you know,
37:38
that's such a shame. How can we help you?
37:41
And the caregiver at some point kind of got frustrated.
37:44
Like, you know, my life also changed unalterably when this happened.
37:48
I can still see I don't I don't I won't dismiss that.
37:53
But this is my partner for life.
37:55
And she can't do, at least right now, the things that we plan to do so.
38:01
And yet, if I complain about it now, it sounds pretty whiny. Well, you're still
38:04
cited. She lost her. She lost her vision.
38:06
How can you how can you be feeling sorry for yourself?
38:09
What's human nature? But both of you are impacted.
38:12
And I think every caregiver relationship, you have to keep that in mind.
38:18
There are two parties here.
38:19
There's the one that has the loss, the tangible loss,
38:23
let's call it. But the other one is loss to us.
38:27
Whether it's an extra burden on them or it's the loss of a spouse that can no longer do
38:33
the things that you plan to do.
38:35
So you you have to take care of yourself and recognize that there are two parties and the
38:40
whole thing.
38:42
Donna J. Jodhan, LLB, ACSP, MBA: Very interesting. If I'm a skeptical employer listening today,
38:51
what's the business case?
38:54
Examples, outcomes, even rough costs and returns for hiring someone
39:03
who's blind? Which accommodations typically deliver the best ROI?
39:15
Ed Henkler: I don't know that I'm expert in that answer.
39:17
Donna. What I would say is I think jaws or any screen overlay screen reader typically is
39:25
what you really need if you have that.
39:28
And of course, depending on how proprietary the company's software is,
39:32
you may have to have some adaptation related to that.
39:35
But I think once you have that the biggest thing that has to happen is very transitory
39:43
that the person needs to learn their way around the campus?
39:45
Probably not. Probably works more effectively if somebody kind of shows them the ropes a
39:49
little bit and shows them the technology that's there,
39:53
how to get it started, or how to call for help if you need to.
39:56
There are plenty of people that are sighted that struggle with audiovisual technology and
40:00
have to call the help desk so you can say, oh,
40:03
I'm blind, I'm being helpless.
40:05
Well, no, a lot of people have trouble with that.
40:07
So yeah, I just think the accommodations are trivial in dollar amount and time commitment.
40:15
So I think where I would focus instead is back to that business ROI you talk about and
40:22
the the person I mentor, as I said, has been early promoted three
40:26
times. So his company absolutely has seen that he's not just equal to other people,
40:31
he's better than they are.
40:34
I tell a lot of people the Walgreens story, the Randy Lewis and Walgreens story,
40:39
which you may be familiar with, but for any of your readers that haven't
40:42
heard it. Randy has a son with intellectual differences,
40:47
and when his son, I guess, was approaching his 30s,
40:50
Randy realized my son's never going to work in meaningful work unless I,
40:54
as a senior leader, do something to change that.
40:56
So he was a VP, I think, at the time in distribution for Walgreens,
41:00
and he committed to hiring 10% people with disabilities.
41:04
Keep in mind, this is broader than vision loss,
41:06
but 10% people with disabilities into the distribution area.
41:11
Before all was said and done, the overall company got up near 10% and
41:16
distribution was at 33.3%.
41:19
Wow. And you might perhaps you know why he talked to people that worked on vocational
41:26
rehab and other things like that, helping somebody with disabilities,
41:29
and that the general feedback he got was, I think you need two typically abled per
41:35
person with disabilities to make this work.
41:37
So they got up to one third, one, one out of three people is a person with
41:41
disabilities. So that's that's a that's a commendable outcome.
41:47
But what's the business or why is that just altruism.
41:51
That's where the difference comes in.
41:52
So Randy measured he he he wasn't doing this just to be altruistic.
41:56
He wanted to see and his lost time stats for the for his area with the people with
42:03
disabilities were better.
42:05
His retention rates were higher, the productivity was higher.
42:10
Safety was higher. Every measurable statistic was better.
42:15
It wasn't neutral. It was better with the people with disabilities in as part of the
42:20
team. And one of the things that I think I love most about it,
42:25
because it's intangible, it's not a it's not a quantifiable
42:28
observation. But the manager said, you know what?
42:32
I love coming to work more.
42:34
These people are so thrilled to have a job.
42:36
It's just fun to be at work.
42:38
They want to be here. They're working hard.
42:39
They love it. So I don't know what that is on a 1 to 10 scale.
42:44
But the point is they were actually making the workplace more fun.
42:48
I get then very specific with people who are blind.
42:50
And as a person who's blind, Donna, you you could say this better than I
42:54
ever than I ever will.
42:55
Probably. But for that person who's blind, in fact,
43:00
I'm not going to reference him by name, but a good shared friend you and I have went
43:06
in for. And he had had a bunch of phone interviews and they loved it.
43:12
And they called him in for that final in-person interview.
43:14
And when he walked in they said, oh, you're blind.
43:18
Yeah. Why? Because we can't hire you.
43:21
He said, well, why not?
43:22
Why not? You're blind.
43:25
And he said, well, so you like me before I got here on my own.
43:28
I don't have anybody with me. What?
43:30
What is it? That. Why can't you hire me?
43:32
Right? You can't. You're blind and I think I remember that story.
43:39
To me, it's it's so important for somebody that's blind just to get to the workplace.
43:46
They've already been innovative, creative, patient,
43:50
all sorts of great adjectives just to get to work.
43:55
And doesn't that tell you something?
43:57
And then I always like the example.
43:59
And there's actually a I forget the man's name,
44:01
but it's a true story.
44:04
I would always say, you know what?
44:06
I personally like the term differently abled in the US,
44:09
it's kind of fallen out of favor, as I understand,
44:12
at least in Europe, it's maybe a little better accepted,
44:14
but I think it says something.
44:16
So if I'm in a burning building and the power's going out,
44:20
man, I want the blind person with me because they can lead me out of the building.
44:23
Nothing's changed. I'm helpless because I'm blind and I don't know how to operate.
44:28
When I'm blind, they're blind.
44:30
That's how they always operate.
44:32
And there is somebody again.
44:34
The name escapes me. But he was in the Twin Towers when the Twin Towers in nine over 11.
44:40
Yeah. And he went down something like 70 stairs,
44:43
70 flights to get out of there.
44:45
So somebody with disabilities broadly, not just blindness,
44:51
encounters challenges that most people don't even consider,
44:54
they just don't even think about.
44:56
And they don't complain about them. They, they that's just part of life.
45:00
I need to figure out how to deal with it and I need to keep going. So I want somebody like
45:05
that on my team. They're used to problem solving.
45:07
They're used to being creative.
45:09
And I always liked it because it's kind of a play on words.
45:12
But I like to say that person who's blind is going to see your problem differently than
45:16
the person who's sighted.
45:17
So take advantage of that, take advantage of that,
45:21
and go back to those managers that love coming to work better.
45:25
Just because the people had a good attitude. They love love the fact that somebody was
45:29
giving them a chance to do something that they easily and readily can do,
45:33
but 70% don't get a chance to.
45:39
Donna J. Jodhan, LLB, ACSP, MBA: The clock is starting to wind down, but I have this question for you.
45:43
Ed Henkler: Okay.
45:44
Donna J. Jodhan, LLB, ACSP, MBA: Media narratives often shape expectations.
45:50
You have a page, appeared on podcasts, contributed to Disability Forward
45:58
Publications, and collaborated with media cooperatives.
46:04
How do we tell better stories that normalize blindness and set expectations higher?
46:15
Ed Henkler: When we take somebody like you who has a great podcast and do that.
46:21
I think this is a point of contention with me,
46:26
with the Association for the blind, when I was board president,
46:30
when they were doing employment programs, they always led.
46:34
In fact, it was the only point they made. Oh,
46:36
these poor people deserve a chance.
46:38
Donna J. Jodhan, LLB, ACSP, MBA: Oh, yeah. Yeah.
46:40
Ed Henkler: And I said, you know, I work at Merck.
46:42
Merck is not hiring people because they deserve a break.
46:45
They just aren't. They're a for profit company.
46:47
That's not how they work.
46:49
I said, and it's the wrong pitch, because the right pitch is that there's a
46:53
huge business reason to hire somebody with disabilities or somebody who's blind.
46:57
There's a very tangible, measurable business reason to do it.
47:02
So instead of talking about giving somebody a break,
47:05
talk about, hey, do you want to strengthen your team?
47:09
Hey, how's your retention?
47:10
You know, do your employees stay?
47:12
Oh, they're gone in two years. They said, well, hire that blind person.
47:15
70% unemployment. They're not going in two years unless you're toxic.
47:19
And then that's on you.
47:20
But if you're a good environment, they're not leaving to us because they can't
47:23
get another job. And that's a shame.
47:25
And it's wrong, but it's reality.
47:27
So they're going to bring so much to your team.
47:32
You need to focus on that.
47:34
And then you can, in kind of an afterthought,
47:36
say, oh, by the way, it's altruistic.
47:38
It's a nice thing to do for somebody that needs a break. But don't don't lead with
47:42
that. It has to be the positives.
47:44
And I think it's just about exposure.
47:47
When I first went with my mom to the Association for the blind,
47:52
I found it pretty hard.
47:53
I was seeing these people with with sometimes very visible blindness,
47:59
whether it be just a milky eyeball or different things like that.
48:03
And it was, I don't want to say horrifying, but I have to admit it was a pretty visceral
48:08
reaction. Yeah. And the more I interacted with them,
48:12
they're no different than me.
48:13
They just. They can't see.
48:15
Oh, well. So the more exposure you have.
48:19
And that's the problem with the 70% unemployment rate.
48:21
Too many people are like I was.
48:24
They just haven't interacted with somebody who's blind. They just don't understand
48:28
what's possible. And I I'm filled with stories,
48:31
whether it be the Paralympians that we talked about.
48:33
I know an architect who's blind.
48:35
I always like to point that out, that, you know,
48:37
gee, you're an architect. That's a visual task.
48:39
Yeah. Didn't stop. We know the mountain biker that I mentioned.
48:43
So it's telling these stories of real people that are doing things that most of us
48:48
probably. I don't mountain bike.
48:50
So being able to do it when you're blind is pretty cool,
48:54
because as a sighted person, I wouldn't try to do it.
48:56
So it's showing what's possible.
49:01
And just getting more exposure.
49:03
And that that goes hand in hand with creating more employment opportunities.
49:07
But and the other thing I kind of tease about this wording,
49:11
I was taught to use person first language, and I,
49:15
I struggled initially to try to get person who's blind as opposed to blind person.
49:20
I finally got it kind of figured out, and I can generally say it pretty easily now.
49:25
But I laughed because everybody I know who's blind goes,
49:27
yeah, see that blind dude over there?
49:30
It's just. But I get it.
49:32
I'm excited. I maybe ought to be a little more respectful,
49:35
a little, at least a little more sensitive. Not respectful, sensitive to it.
49:39
So just show, show people the Paralympics really do that.
49:45
Show people with disabilities doing things that people without disabilities can't
49:50
imagine doing. Maybe a final thought if we're at that point,
49:55
I think we all have disabilities.
49:57
Yeah, but I think most of us are call it fortunate enough to fall in the center of the
50:01
bell curve. So if I use myself as an example,
50:04
before I had laser eye surgery, I couldn't see the top layer on the eye
50:08
chart. I was blind, but I could put glasses on.
50:12
Then I was 2020, so I had a disability.
50:14
That was just accommodation that is readily available.
50:18
I think I'm a bit face blind.
50:20
I can meet people and I can meet them 3 or 4 times over a week or two,
50:24
and I still don't remember the name.
50:26
I don't remember the face, don't recognize it. I don't think I'm purely
50:29
face blind the way some people are, but I think it's a weakness.
50:33
I also have a lousy sense of direction.
50:35
My wife, I always tease, has the girl and the guy Gene,
50:38
because she remembers all the stores and all the road names,
50:41
but she also remembers everything else.
50:43
I don't remember any of it, but I have GPS.
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Doesn't matter. I can get along just as just as well as she can,
50:49
if not better, because the GPS will give me a route that she doesn't even know exists.
50:53
So I think most of us have disabilities, and most of us it doesn't matter because
50:59
there are accommodations and there are enough of us in that same area that it just doesn't
51:04
matter. So recognizing that that there's not this 90% of the world that has no
51:12
disabilities and 10% that does, but rather just where are you and how are the
51:16
accommodations for what's wrong with you?
51:18
Not wrong. Wrong way to say it, but I think you know what I mean.
51:23
Donna J. Jodhan, LLB, ACSP, MBA: I think what strikes me out of listening to you here is thrive versus survive and
51:29
caretaker versus caregiver.
51:32
So in our final moments of our interview here,
51:37
what words of wisdom would you like to impart on our listeners?
51:44
Ed Henkler: I think you just said it, but don't be satisfied with doing less than
51:51
you can. And that's that's advice to anyone.
51:55
Most of us are so capable of so much more than we do.
52:00
As we age, as you have disabilities, as everything else.
52:03
It's a big, beautiful world out there. I have as I approach my 70th year,
52:08
I have so many friends who are sitting in a recliner looking at their iPad,
52:14
doing nothing else and saying, I'm bored.
52:18
You know, I used to work. I had a lot to do.
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I have nothing to do right now.
52:21
Yeah, I don't get that because I am still working.
52:24
Maybe not much longer, but I'm still working.
52:26
My wife and I have busy, rich schedules, whether it be with our kids
52:31
and our grandkids, or whether it's travel or it's whether DIY in our house or it's going
52:35
to play golf or it's there's a big, beautiful world out there that you can have a
52:40
lot of fun with. If you have a lot of wealth,
52:41
you can you can do a lot of really cool things.
52:44
If you have no wealth, you can go hike, you can go camp,
52:48
or you don't be satisfied with sitting in a chair.
52:51
You don't need to unless of course you have to.
52:54
But assuming you don't go out there and enjoy this big,
52:59
wonderful life that is out there and big, wonderful world.
53:04
Donna J. Jodhan, LLB, ACSP, MBA: And it has been a pleasure listening to you.
53:07
And I really think your philosophy is refreshing,
53:11
recharging and something that everyone should really,
53:15
really adopt, I mean, I like it.
53:20
And we gotta be more positive to enjoy what we have.
53:23
And, you know, stop complaining, but just go forth.
53:27
So thank you very, very much for being an interviewee on my podcast.
53:34
And come back anytime, anytime you'd like to spread more of your
53:37
philosophy. Please do not hesitate to reach out to me.
53:41
I'd be happy to have you on again.
53:44
Ed Henkler: It was my pleasure, Donna, and thank you for everything you're doing.
53:48
Donna J. Jodhan, LLB, ACSP, MBA: Very welcome. Let's work together now.
53:51
Ed Henkler: Sounds perfect.
53:52
Donna J. Jodhan, LLB, ACSP, MBA: Take care. And thanks again.
53:55
Ed Henkler: Thank you.
53:55
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Bye. Bye now. Bye.
54:00
Podcast Commentator: Donna wants to hear from you and invites you to write to her at Donna at gmail.com.
54:07
Until next time.