The power of compassionate design, with Marcus Engel

ME: 00:00

You could see the promise of this device that I was holding in my hands. The way it interacted became rather intuitive and it also helped me figure out in what direction to walk. And I was a little bit flabbergasted by the fact that maybe there's going to be a new device out there that's not GPS, that is not a white cane and that is not a guide dog that could help blind people get around.

TS: 00:35

Welcome to Made For Us, the show where we explore how intentional design can help build a world that works better for everyone. I'm your host, Tosin Sulaiman.

It's the final episode of season two and what a season it's been. This is the year that Made For Us went global and we now have listeners in more than fifty countries. So to everyone who's tuned in from Australia, Canada, Germany, the US, Egypt, Singapore and everywhere in between, thanks for pressing play. In other exciting news, this week Made For Us was a run up at the International Women's Podcast Awards, which recognizes moments of brilliance in podcasting and the women that produce them.

Thank you to the judges for the honour - and if you'd to check out the episode that was recognised, it's the first episode of this season, my interview with Lucy Edwards. I also want to thank all the guests who've been part of season two. It's their stories that have made this show possible and I've learnt so much from speaking to them.

TS: 01:35

If some of the conversations you've heard this season have felt like a glimpse into the future, then you're not alone. My guest today, Marcus Engel, feels like he's already living in the future, thanks to AI and other assistive devices. Marcus is a speaker, author and compassion consultant. He's also an advisor to Haptic, whose founder, Kevin Yu, we heard from in last week's episode. And I'd highly recommend you listen to that first if you haven't already. Haptic is the company behind one of the world's first touch-based navigation apps. And it was a meeting with Marcus that inspired Kevin to start the company.

Today, we'll hear Marcus' story and how he thinks haptic technology could impact accessibility. You'll also hear Marcus talk about how surviving a car accident led him to become a compassion consultant, and the crucial difference between empathy and compassion.

If this episode resonates and you think others should hear it, then don't keep it to yourself. Share it with a friend or colleague, and please leave a five-star rating on Apple Podcasts, Spotify, or wherever you're listening. It means this show can be discovered by even more people.

Now here's my conversation with Marcus Engel.

ME: 02:48

My name is Marcus Engel and I am a professional speaker and author and consultant and professor.

TS: 02:56

So to give listeners a bit of background, the reason that we're having this conversation is because we were introduced by Kevin Yu. He's the founder of Haptic who I interviewed recently. He's also a friend of yours and your name came up a number of times in our conversation because it was a talk you gave that inspired him to start the company. So we're going to talk about that, but for us, want people to learn more about your story. So you said you're an author, a speaker and a consultant. You describe yourself as a compassionate consultant on your website.

ME: 03:28

Yes, yes, I try to instill more compassion into healthcare organizations and healthcare institutions, hospitals, nursing homes, etc.

TS: 03:38

So tell us more about what led to what you're doing now.

ME: 03:42

Yeah. So I kind of have a disjointed story a little bit. I grew up a totally normal kid in the Midwest. And when I started my freshman year of college at Missouri State University, I was like every other college freshmen out there. I was going to parties and meeting girls and probably not going to class as much as I should have been. And about six weeks into my freshman year of college, I got homesick and went home for the weekend, saw my mom and dad on a Friday night, went to my high school's homecoming football game on Friday night. And then Saturday afternoon, that first weekend home from college, I drove into St. Louis, Missouri to meet up with three friends who I had made during my high school years. That night we attended the season opener of my hometown St. Louis Blues hockey team.

I attended that game and it was on our way home from that game that an event happened that changed my life considerably, permanently, and almost finally, almost finally, my friends and I were going home from the hockey game and just a few miles away from the stadium, we were struck broadside by another car that was driven by an intoxicated driver. And that crash not only took one hundred percent of my sight instantaneously and totally and permanently, but I also had what is called a LaForte 3 fracture. It's a medical surgical term that pretty much means everything between the hairline and the chin has been crushed. So I spent about six weeks in the hospital undergoing

many, many, many hours of surgery and for the next year I was still undergoing surgeries. I a year without being able to eat solid food, was a year before I could sit on a toilet by myself. Just a multitude of life changes that came due to that car crash.

TS: 05:56

That must have been a terrifying experience for you and your family. I guess there are some profound lessons that you learned from that time, which you've since shared in your talks and in your books. What are some of the things that still stick with you?

ME: 06:12

Yeah. So I really consider myself to be incredibly fortunate. And you may not think that while I'm sitting here living with permanent vision loss and a lot of the leftover injuries still from that crash, but I consider myself to be incredibly lucky because I was able to experience unconditional love, not only from my family and friends, but also from the medical team that took care of me, the doctors, the nurses, the physical and occupational and speech therapists, all of the healthcare professionals that I interacted with during that lengthy recovery taught me lessons about how to take care of patients who are suffering.

And that's what I've been speaking professionally on for 20 years is going around the country and around the world for that matter and sharing with those who are professional caregivers, what are the little tips and tricks that a nurse or a doctor or communication skills that they could use with patients who are suffering to let those patients know that they are held, that they are safe, that they're protected, and that someone is watching over them. And so from that terrible experience, comes lessons that hopefully not only inspire healthcare professionals to understand what life is like at the other end of the stethoscope, but also get them to change some of their ways so that their patients too will feel that compassion and empathy coming from the care.

TS: 08:02

And I understand that there was one person in particular when you were in the hospital that had a significant impact on you. Can you tell us a bit about that story?

ME: 08:12

Yeah, so her name was Jennifer. And Jennifer, the night that they rolled me into the emergency department, my life was hanging by a thread. Most people don't survive a LaForte 3 fracture. I had been criked in the street, which meant that before I ever reached the hospital, my head and my face were so swollen from all the broken bones that it was cutting off my air supply. And one of the paramedics, while I was still laying in the street, made an incision in my throat that is the reason that I am alive today. That little incision in my throat that gave me an alternative breathing passage is what saved my life. So once I got to the hospital, I don't have a lot of memories about that first night in emergency room, but I remember Jennifer very, very vividly.

And that's because during that first night, I was in and out of consciousness throughout the night. And when I was unconscious, I don't know if that was shock or if it was narcotic induced or if it was natural sleep, whatever the case was, I would, I would be drifting along in unconsciousness and then just slam right back into the here and now I would wake up, become conscious and just enter this world that was filled with pain and terror and darkness. The only thing that gave me any kind of comfort when I woke up was the fact that someone was holding on to my right hand. And I could tell that this hand that grasped mine, I could tell that this hand belonged to a female. Anytime she could tell that I was conscious, she would squeeze my hand and I would squeeze back in recognition and the owner of that hand would then say the same things every time I woke up. She would say, Marcus, my name is Jennifer. You were in a car accident, you’re in the hospital.

ME: 10:26

But then Jennifer would repeat what I think are the two most compassionate words any human being can say to another. And those words are, I'm here. I'm here. And so when Jennifer would hold my hand and say, Marcus, I'm here, I didn't really know where here was, but I knew that I was not alone. I knew that I was not alone. And so one of the things that I teach to healthcare professionals and anyone else is that simple human presence is the greatest gift we can give another person. It's just being attentive and mindfully present in that moment with another person. That's the greatest gift we can give them. Because at the time, Jennifer could not do...She couldn't perform surgery on me. She couldn't push drugs, but yet she still knew that in that most desperate of moments that what I needed was just someone to hold my hand and to be with me.

TS: 11:33

Could you talk a bit about what the recovery process was like? You said that you went through some of the biggest life changes anyone could go through.

ME: 11:42

So as strange as it sounds, the whole idea of blindness took a backseat to the physical trauma that I had endured. It's really hard to be worried about your future of being blind for the rest of your life when the next day you're going to have a twenty, twenty-five hour facial reconstruction. And so there were to this date, hundreds of hours of surgery.

And during those weeks and weeks of recovery and surgery and more recovery and back to surgery and more recovery, I got to interact with so many wonderful healthcare professionals that really looked at me as a person and not just as a diagnosis or a surgery or prognosis or a room number, but they actually looked at me as a a fully developed human being, a fully functional human being, albeit without my sight.

TS: 12:46

I understand for a long time you didn't actually find out who Jennifer was, but that changed a few years ago.

ME: 12:55

Yeah, yeah. So I've written a book, probably my most popular book is called, I'm Here: Compassionate Communication in Patient Care. And it was based on that brief experience with Jennifer. But yet, past that first night, I never knew anything about Jennifer. I never knew her last name. I never knew what her position was in the emergency room.

And even my family members had to ask me, are you sure you didn't hallucinate her? Because I was on a lot of narcotics at that time. There's every chance I could have, but I knew that I had not hallucinated her. I knew that she was real. So about ten years ago, I had just graduated from grad school at Columbia University in New York. I believe we share that, our alma mater.

TS: 13:45

That's right.

ME: 13:47

And I was speaking around the country and I got the invitation of a lifetime, which was to go back to the very hospital that saved my life to share my story. And they had me there at the hospital for five days, giving a certain number of presentations each day. And on the second day that I was there, after starting to spread this message throughout the hospital, I got done giving a keynote and one of the administrators walked up to the stage and said, Marcus, we've got a surprise for you. We found Jennifer. And not only had they found Jennifer, but here Jennifer was standing right in front of me. And for the first time in two decades, I got to hold her hands again and I finally got to tell her, thank you. Thank you for never letting go of my hand. Thank you for staying with me on what was absolutely the worst night of my life. An incredibly precious moment to be able to hold her hands again and just to simply say thank you.

TS: 14:55

That must have been so special. And I understand that that moment was actually captured on camera.

ME: 15:02

Yes, my wife happened to be there that day and she got a couple of minutes heads up that this was going to be happening and that gave her enough time to get her phone ready and she was able to capture that video, that reunion. And if you want to see that video, you can go to my website, which is just my name, MarcusEngle.com. And if you can make it through the Marcus Meets Jenny video without crying, you're a stronger person than I am. It was an incredibly touching moment and it's one that I will never forget.

TS: 15:37

Yeah. And I did watch that video and one thing that was incredible was that she remembered you. She said that I think you were the only patient whose name that she remembered.

ME: 15:48

Yeah, nurses, as you can expect, go through a lot of patients. And Jennifer, not only at the time she was holding my hand, she was a certified nursing assistant. She had, by the time we were reintroduced, she had 20 years of experience behind her. She was an RN and she was the clinical nurse manager of the same surgical intensive care unit where I spent the good portion of my tour of duty. So she wasn't just a person that was there in that moment for the next twenty years and now thirty years. She has been that compassionate presence for other patients just like me.

TS: 16:31

As you said, you're now working with many healthcare professionals and helping them to improve their patient experience. Could you share what the change is that you would like to see in healthcare?

ME: 16:44

My goal, my whole premise is that no patient ever has to suffer alone. That everyone will have those skills like Jennifer had to be able to provide that compassionate, empathetic presence when a patient or a family member is suffering. I think one of the greatest things that we can do is to be sure that every patient is advocated for by someone who is there with them. My family and I have a policy that anytime somebody goes in the hospital, there's someone else with them. Because when you're a hospitalized patient, you can't really advocate for yourself. Because a lot of times you're on narcotics, you're post-operative, and your pain level is so high, you're not thinking straight, and you can't advocate for yourself to get what you need for the healing process. And to think that, that our health care professionals are just going to intuit that is kind of short-sighted thinking. So I believe that advocacy is one of the greatest things that we can do.

TS: 17:53

And there's also a science behind compassion. It's not just about being nice. And this is something I believe you teach to pre-med students. What's some of the research you've come across on compassion and the opposite, I guess, compassion fatigue?

ME: 18:10

Well, let's talk about that because I feel like the opposite, sometimes we can learn as much from opposites as we can from the initial thing. So I often say that the opposite of love is not hatred. The opposite of love, of course, is apathy. Much in that same realm, the opposite of compassion is not cruelty. The opposite of compassion is judgment. When we are judging things, we are no longer compassionate. I've been teaching at University of Notre Dame and I've been teaching pre-meds now for six or seven years. And we have a definition of compassion that is this. Compassion is witnessing suffering, being moved by that suffering, having a desire to ease the suffering, and then actually doing something about it.

So it's a four-part definition. It's witnessing suffering, being moved by that suffering, having a desire to ease it, and then actually doing something about it. So the actually doing something about it component is where empathy and compassion differ. Empathy is a feeling that we have within ourselves and our souls that we are feeling the same thing that another person feels. However, compassion is the action component. Compassion is a verb. Compassion in action is when we're actually doing something to try to ease the suffering of another person.

There have been many books written on this subject, probably the most famous of which is Compassionomics by Steven Trzeciak, who is a medical doctor. That is actually where we tie the bottom line, the numbers on the hospital's financial report towards to being compassionate. And yes, there is a correlation that patients heal faster, that they endure less stress, and they have an overall better experience if the caregivers around them are displaying compassion and empathy.

ME: 20:30

There's all kinds of measurements that are done in hospitals, just like any business these days. As soon as you use a product or a service, you're getting a survey on how well that product or service worked for you. And hospitals are no different, at least here in America, hospitals are no different. And they are quote unquote judged upon their performance of getting people better by surveys and patient satisfaction surveys. And so those are something that come into play where a patient does indeed have some voice to be able to say, was this care compassionate and empathetic and understanding, or was I treated just like a number, just like a slot in a factory to put a widget in?

And I feel like those who have gone into healthcare truly have a heart, a compassionate heart to help people. But sometimes the systems that we find ourselves in don't allow enough time for that compassionate, empathetic response to be shown to a patient. I like to have hospitals understand that these patient satisfaction scores actually are, they're a good thing for hospitals because it teaches you areas for improvement. And how can we get our staff to act in a more compassionate and empathetic manner to hopefully shorten that patient's stay in the hospital and help them recover more quickly.

TS: 22:04

So you mostly speak in healthcare settings, but you found yourself speaking to a room full of design students. Tell us the story of how you got to know Kevin Yu and why you agreed to give that talk.

ME: 22:18

So it's kind of a, it's a little bit of a funny story. When I moved to New York to attend Columbia, my wife and I moved to the city and we knew absolutely no one in the city of eight or 10 million people. And so there were two or three things that I wanted to do whenever I got to New York. And one of them was I wanted to go have a beer at this bar called McSorley's, which dates back to the mid eighteen hundreds, still operating bar in New York city. And I know no one, it's one of those kinds of places where they end up seating everyone together. So it doesn't matter who you came in with, you're sitting with other people. And for me, who knows no one in New York, it almost knocked me off my seat when the guy was sitting next to turns to me and says, Hey, are you Marcus Engel? Which totally blew my mind.

And as it turns out, this young man was a member of my college fraternity. He had heard me speak at a conference the year before and invited me to come to Pratt School of Design in New York City to give a presentation to my fraternity chapter there. And that's where I met Kevin. And that's where after the talk, Kevin asked me some questions that were a little different than usual. People ask me about my story. They want to know how long it took me to get back on my feet and what living with permanent sight loss is like and things like that. But Kevin asked these really intriguing questions about mobility and how getting from point A to point B, what are the biggest challenges that I had? Well, living in New York City, walking all over the city, I had a lot of research to draw from just being a pedestrian.

ME: 24:14

And one of the things that I shared with Kevin is how, with the advent of cell phones, people who are living with sight loss, we have a lot more things available at our fingertips. There's all kinds of GPS apps, and there are different devices that will speak out, walk three blocks, make a right hand turn. That might be what the directions are. But that's hard to listen to if perchance you're in a city like New York, which can be very loud and chaotic at times, and you can't hear that coming through a pair of headphones from my phone.

And Kevin took that to heart and started thinking of ways that it might be possible for a blind person to receive guidance through technology without using any kind of audio clues. And that is where a couple of years after giving that speech, Kevin invited me back to New York to try out a product that he and some other designers had created. And it was a new product for the mobility of people who are blind or visually impaired. And I remember needing them in the park and test driving this new device, which could not do very many things at the time. But you could see the promise. You could see the promise of this device that I was holding in my hands, the way it interacted became rather intuitive and it also helped me figure out in what direction to walk. And I was a little bit flabbergasted by the fact that maybe there's going to be a new device out there that's not GPS, that is not a white cane, and that is not a guide dog that could help blind people get around. And that through the advancements of haptic technology is what Kevin and the team are doing.

TS: 26:14

And what you're describing is the HapticNav, which is essentially a navigation app that uses vibration to guide users to their destination. And you've since become one of the advisors to the company, I believe.

ME: 26:27

Yes, and I'm just one opinion, but I try to use this in real time in a real life scenario so that I can give the designers and the engineers proper feedback on how this works for Joe average user. I am not gifted in the ways of technology. I would be the first one to admit that. Yeah. Like I said, the HapticNav is so intuitive that you don't have to be a computer professional in any way to learn and learn very quickly how the various vibration patterns can guide a person who is living without sight.

TS: 27:07

And you remember the first time you tried the product.

ME: 27:10

Yes. And again, it was not just the product, but it was the idea that haptic navigation even existed. It was not something I'd ever even thought about, that I could be guided by a vibrational path. I think most blind people would say I am guided by either a guide dog or a GPS, or I'm using my white cane to get around. And yet the haptic nav was a just a completely new tool in that toolkit. The fact that it was so easy to learn, just user-friendly right out of the box made such an impression on me. And then when they started talking about, wow, so this could not only deliver information to people who are blind who need guidance, but this could also be applicable across all of society. And I primarily look at how it works with guiding for me, but I know that Kevin and the team have gotten lots of different feedback on how it can be utilized in other situations too.

TS: 28:17

And sticking with the potential impact on people who are blind and visually impaired, explain what solving that navigation problem could mean for people like yourself and what are the implications of that?

ME: 28:31

Well, a perfect example would be, say that there is a blind person who's in New York City who's trying to get around using a white cane. And even if that person is very proficient with orientation and mobility, they could use their ears and they can use the long white cane to help them get from point A to point B. There are things that you cannot take out of the equation, which is that, hey, as you're walking down the street, what if there is a giant garbage truck that's right next to you on the sidewalk. And that garbage truck, due to its engine and the mechanics, is making so much noise that you're not able to hear GPS, or you're not able to hear where your cane is tapping. That's where the haptic nav could come in perfectly and still allow a person to go down the sidewalk in a straight line, completely being guided by vibrational feedback.

TS: 29:32

Kevin told me that as part of his research, he blindfolded himself for a few days and tried to go about his daily activities. But when he told his co-founder about it, his reaction was, that's so rude. I'm curious to get your take on just how far should people go to put themselves in someone else's shoes without causing offense.

ME: 29:54

It's a great question and it's one that I get commonly, but I often say that putting on a blindfold for an hour, no more gives a person an idea of what it's like to be blind than if I were to put on a bra and I would know what it's like to be a woman. It's not the same thing. It's not the same thing. It's an experiment for somebody for an hour or two. Now, Kevin doing it for a couple of days, that was a hardcore experiment with an upside in learning. But typically, I'm not such a huge fan of things because it's just, I don't think of it as disrespectful or rude or anything. I just also don't think it really gives as much of an idea of what the actual experience would be like as you would think. There's no way that you can simulate lifelong blindness with wearing a blindfold for an hour or even a day.

You find the people who have the lived experience. You reach out, we have this wonderful thing called the internet these days and groups and Facebook groups are plentiful. You can find people anywhere and to find those beta testers who can really provide that real life feedback. Now, Kevin has gone pretty deep into the realm of blindness by visiting all kinds of different facilities across the country that help train blind people. So he's not just doing it for an experiment for an hour two. He has been immersed in this research and this product development for over ten years now. And I'm personally thankful for his efforts, but for how do you learn? Well, if you can't learn it yourself, you go find people who do have that lived experience.

TS: 31:44

And you described the HapticNav as a compassionate product. I'm wondering if there are other products you'd say that about.

ME: 31:54

Yes, I often say that Uber is the second greatest invention or creation for blind people only surpassed by the iPhone on which to use the Uber app. And by eliminating that barrier to transportation, that levels the playing field a lot for people who are living with sight loss. But there are hundreds, literally hundreds of different apps for people who are living with sight loss to be able to utilize. for example, I've got apps on my phone where I can hold the camera up to my shirt and it will say light blue. There are apps where you can take a picture of your environment and it'll give you a detailed idea of what is in your environment. There are apps that I can click a quick photo and will tell me all of the ingredients that are in a product from my refrigerator.

There's just a lot of different things that blind people can utilize thanks to smartphones. And Be My Eyes is a perfect example too of a compassionate creation, as is Aira. Any of the apps that connect a blind person with a sighted person on the other end who can give visual interpretation or assistance, that's something I wouldn't have had before an iPhone came along. That's not something that we would have had twenty years ago or thirty years ago. I felt very fortunate at the time that I lost my sight. Windows 95 hadn't even come out yet. So going back to the days of DOS before Microsoft even had a Windows product. So over the years, I've seen the forward progress of technology and to be able to contain the world in the palm of my hand with an iPhone and with just some apps that are nearly all free just opens up a world of possibilities that we're living in the future, it feels like. For me, the use of AI, using the Be My Eyes app, that's something that I utilize probably half a dozen times a day. Yeah, I would say that's probably a pretty good estimate. And I would have the opportunity to use that even more if I were say single or I didn't live with family members. Just the ability to have that information at my fingertips, just like anybody else would have, that's an advancement of AI that I don't think I could have even imagined that a few years ago.

TS: 34:40

Before we wrap up, are there any final thoughts you'd like to leave people with?

ME: 34:44

First of all, I'd just like to say thank you to you for having this podcast and for bringing this kind of information to more people. For those designers and engineers out there who are working on universal design and making things, thank you, thank you, thank you. For the Kevins of the world that continue to pour their heart and soul into products that are going to make the lives of people living with blindness much better, thank you, thank you.

I am excited to see where not only HapticNav goes, but to see where we'll be in a couple of years with technology. And what most people would consider to be one of the most horrible things that could ever occur, the loss of sight. We are human beings, we are visual creatures, we take in eighty plus percent of our information through the eyes. And when one loses their sight, that is a significant barrier to living your life the way you want it. However, AI and apps like Be My Eyes are some of the ways that make me still able to have a life, still able to have a full, successful, happy life. And I'm just so grateful to designers and engineers who keep working to make the world more accommodating for everyone.

TS: 36:09

Thank you for sharing that. How can people learn more about your work or follow you?

ME: 36:14

The best way to learn about any of my stuff is through MarcusEngel.com. My podcast is called Compassion and Courage, Conversations in Healthcare. You can certainly find that. And if you want a little more information on some of the more scientific sides of compassion, as opposed to the touchy feely, a little more of the scientific side, there's a short video that is called Compassion is Action. I would steer you towards that video as well.

TS: 36:43

And I can't end without asking what did happen to the friends that were with you in the car when you had the accident.

ME: 36:52

Yeah, so I was the one who was hurt the worst, which is not surprising. I don't think you can get more hurt than I was without dying. My friends that were in the car with me all survived. The two in the backseat had very minor injuries. And then my friend Tom, who was driving the vehicle, Tom had some vertebrae in his neck and in his upper back that were fractured. And luckily we all survived.

TS: 37:17

That's amazing. I'm glad that we could end on that note. And I want to thank you for taking the time to speak to me.

ME: 37:24

Thank you. Thank you for the time and thank you for the podcast.

TS: 37:30

Thanks to Marcus Engel for wrapping up season two of Made For Us. I've included links in the show notes if you'd like to learn more about his work. Season two may be over, but you can keep up with Made For Us via our newsletter, which I've linked to in the show notes, and on LinkedIn and Instagram. And please make sure you hit the follow button wherever you're listening to this so you don't miss out when the new season lands.

Made For Us was created and produced by me, Tosin Sulaiman, with audio engineering by Justin Orive and graphic design by Judith Raynault. Sharon Tsurho assisted with marketing and the cover art was designed by Valentin Grimoux. Thanks for joining me and see you next time.