Being Henry: Augmented Reality Experience with Sarah Berkovich and Henry Evans

Introduction 00:00

I was intrigued to see how Sarah would creatively use this new type of film technique to give the viewer the sense of my being trapped in my body. It was eerie, how well it worked.

Mai Ling 00:17

Welcome to Xceptional Leaders with Mai Ling and Martyn, where we give you front row access to intimate conversations that are shaping the way the world is supporting people with disabilities. If it's happening, it's being shared here. I'm Mai Ling.

Martyn 00:29

And I'm Martyn Sibley, and today we're going to be chatting about the augmented reality movie called Being Henry (http://www.beingvr.co/about), which is produced by Sarah Berkovich (https://sarahbfilm.wordpress.com/) and starring Henry Evans (https://www.ted.com/speakers/henry_evans) and his wife, Jane. It's really interesting because it's all about immersive experiences. So, Mai Ling and I did a little bit of homework because we thought, if we're going to go into a topic as techie and as cool as this, we better get our facts straight. So, a few little kind of ground and anchor points around AR and VR. Mai Ling, do you want to kick off with a couple of facts that we've prepared?

Mai Ling 01:03

Absolutely. And it's interesting, because I kind of live in this space with Cognixion (https://www.cognixion.com/) and the AAC headset that we're creating, which is augmented reality, and brain computer interface for AAC. But when Martyn said to me, hey, can you explain the difference between AR and VR? And XR? I was like, I think I can. But I'm glad we went out to we did our call out our shout out.

Martyn 01:25

So, cover all bases.

Mai Ling 01:27

Exactly, exactly. Okay, so virtual reality replaces your vision. And so, you're literally are seeing something inside of an actual space, augmented reality is adding to your vision. And so, like with Pokémon Go, you're looking through the camera part of your phone, or through your tablet, you're seeing the world around you. And then you'll see a little Pokémon, you know, like, superimposed on to something so but you're still looking through your regular vision, mixed reality actually anchors objects in the real world. And that brings me to think of Oculus. So, when you put the Oculus on, you are 360 within reality, and they will place things like a desk, you know, right in front of you. And that is like literally the right height. It is touchable, like with a haptic sensation. It's, it's actually incredible. I don't know, Martyn, have you had any opportunity to play with Oculus.

Martyn 02:18

Was a first of all, I wouldn't say like the listeners here. I think we all kind of inherently feel that's the kind of differences, but that was super helpful that you were able to break it down as clearly and as easily as that. So, thank you Mai Ling. I really appreciate that, on behalf of everyone listening as well. And yeah, in terms of personal experience, I have to say it's not something I've ever really had the opportunity to do. At Purple Goat (http://purplegoatagency.com/), we've had a few different brands that have asked for kind of, you know, request for proposal and we've been able to sort of then get a little bit more stuck into this world and what it means. And you know, some of the different potential use cases of disability and accessibility, which is super interesting. But it's certainly something I need to do on a personal level. So yeah, personally no, but kind of professionally, it's something we've dipped our toe in the water. And I think in terms of that accessibility, it's the age old stuff, you know, are the entrepreneurs and the designers and the creators of the new wave of technologies coming to coming soon to you know, looking at it from the prism of does it include everybody have they spoke to disabled people, and not just one disabled person, but all the different segments and subsections of the disabled community? So, I think there's definitely a kind of a sense check there for that world to make sure they're including disabled people in. Any thoughts on your side on the accessibility part Mai Ling?

Mai Ling 03:51

Yeah, I know that there's a lot of access going on in the gaming world. And I've talked about that for a couple of years now. And we know a lot about, you know, the new controllers and things like that. But the mixed reality is really taking experiences to the next level. And I really believe that people with disabilities who have movement restrictions, access restriction, things like that. This is really opening up the doors for experiential learning, you know, really just being able to go to places that you typically wouldn't be able to. And this is where Sarah really, I hate to use a simple word, like hit the nail on the head with this, showing us what Henry's life is, like, through augmented reality. He actually is very involved with robotics. He's very cutting edge. And for our listener, I know that you're going to fall in love with Henry and his wife, Jane, through this interview, but they share you know, how life has changed so much. Because he was obviously typical out there doing his, you know, life things, and then he had a stroke. And so he uses all different types of technology and access, you know, in order to be able to go to the museum, talk with his friends, you know, like, do all of these amazing things and this is where you step it up a little bit Martyn from going from like a 2d experience like we are right now on zoom to doing something that is more experiential, like they have the ability to maneuver the space yourself, which is amazing. So if you're in a museum, you can actually, you know, go around and see the things that you want to see instead of being relegated to this is what you're watching as a passive experience, you know, just, it's just so exciting.

Martyn 05:25

And I think the two use cases we became aware of for this kind of technology, as you say, there's almost different like an a la carte menu right as a sort of, there's the gaming part, and then different hardwares and softwares, that can make gaming generally more call on immersive, but obviously include different types of barriers that include more disabled people. But yeah, when we were looking at the kind of use cases in the outside world, there were two parts where some people maybe can't get into a museum or part of a museum. So, it's a kind of alternative offer, that you know, I think, in Stratford-upon-Avon here in England, there's a Shakespeare museum, not always so wheelchair accessible, because it's like hundreds of years old. So, there's an upper floor where I can't get there. But I could use a VR headset to actually experience it as best as possible, you know, as an alternative. And the other one is often around sort of neurodiversity and even anxiety and this kind of thing where you can actually look at a place before you can actually go and visit. So, you sort of accustom yourself and get used to it, climatize, almost yourself to that place and could be a shopping center could be a hotel in another country where you're going to go your holiday. But again, it just gives people like, say on the autistic spectrum, that opportunity to familiarize themselves. So, there's all sorts of cool ways that I think this is going to help disabled people. As long as of course, it's all inclusive and designed for everybody at the beginning as well.

Mai Ling 07:01

Exactly. And we're going to talk more about this in our upcoming interview with XR Association (https://xra.org/) CEO, Liz Heyman. I'm really excited about my talk with her. And we'll be probably exploring that in the early parts of June.

Martyn 07:12

Looking forward to that. So yeah, before we get into this episode, and all the amazing stuff, we've kind of teased the audience with so far, just the usual shout out to say, please do follow us, like us on all the social media channels, go to xceptionalleaders.com and sign up for our mailing list. And always, if you have that little bit more time, please do give us a lovely sparkly happy review just to help get us get the podcast out to more and more people, because that's our big motivator and driver is the reach and impact more lives of this podcast.

Mai Ling 07:45

Absolutely. Thank you so much. And I really think you're gonna love this episode,

Martyn 07:48

Let's get to it.

Mai Ling 07:53

Well, hey, I am so excited to have not one, not two, but three guests on my episode today. And that is because this is a very unique interview situation. I have Sarah Berkovich, who is a virtual reality producer and educator, and she has created an amazing immersive experience movie called Being Henry. And so, when I found out about this, I was like, oh my gosh, I need to have Sarah and Henry. And then I found out that Henry also works very closely with his wife, Jane, so that we can get all of his communications as quickly and as real time as possible. So, for my listener, I just want you to know that we are going to be listening to Sarah's voice. And then Henry is also going to be using some prerecorded responses. But we also wanted this to be as real time as possible and as organic as we always want these shows to be. And so, Jane has agreed to join us, and she is going to be interpreting using a letter board. So, for those of you who don't know what a letter board is it literally it is the letters on a board, and it could be clear could be paper. And she's so comfortable with him actually, you're going to be amazed at how fast this happens, where he is beginning to spell out letters and she is translating this into what his thoughts are. So, let's get started. I'm going to begin with Sarah, welcome to the show. I can't even begin to tell you how excited I am about mixing together virtual reality and a lived experience. And so, could you tell us a little bit about how you came up with this idea?

Sarah 09:24

Sure. Yeah. I mean, I'm really interested in the same sort of reason of using virtual reality to tell stories that put you in someone's perspective. I have a background in documentary filmmaking. So, the first time I saw a virtual reality experience, it was really eye opening to me because I'm like, this gives me a feeling of being there that like I don't quite get in a regular film. So that was something that I wanted to in my own artistic practice, explore more. And so, after grad school, I was living in the Bay Area and learning about VR technology. Just kind of by going to different meetups and meeting engineers and technology people. And so that's sort of where that all began. And then when I was looking for stories I heard, I think I heard about Henry on the radio. It was like a Stanford radio show or something. And it just struck me that his experience using technology to gain accessibility to elements of the world around him that, you know, he might struggle with accessing in other ways, that's very similar to the experience that I felt using virtual reality. So, I thought that'd be like a really unique story to tell. And there was a reason for it too because you could feel some of that the benefit of using technology and how that can sort of expand possibilities.

Mai Ling 10:46

Fantastic. I love when people bring really creative ideas together. And that is just an amazing space that you're in. I also touch on that with the company that I'm with, which is Cognixion, and we are working on augmented reality and brain computer interface for AAC. So, this is an area that I'm very interested in. Henry, I already have questions for you. So, let's get into this. What did you think about the project when you were first approached by Sarah?

Henry 11:11

Till date, my experiences with virtual reality had been good. I had begun by using an early beta version of the Oculus Rift virtual reality headset almost as soon as it was released around 2013. An engineer Bryan Galusha(https://www.linkedin.com/in/bryan-galusha-0b3618a/), from the company Fighting Walrus (https://www.apollo.io/companies/Fighting-Walrus-LLC/5569eb5873696425989ab600) had responded to my online plea for assistance expanding my world with a camera drone. He suggested modifying the quadcopters so I could fly it with my head and see what it sees all while I was lying in my hospital bed. His team was able to do it, I could see the live drone camera feed in my virtual reality goggles and control the way the drone flew just by tilting my head. It was a lot like walking and looking around my yard. It was exactly what I had wanted. A few years ago, I had another close encounter with virtual reality. My friend, a paraplegic adventurer named Dana Gordon wanted me to share the experience of flying in an ultralight. He strapped a 360-degree camera up to the top of his helmet and recorded the entire flight. When I view the 360-degree video using a virtual reality headset, I could look around as if I were in a little airplane myself. It was very cool. So, when Sarah asked me if I wanted to participate in an experimental virtual reality short film, I was excited.

Mai Ling 12:38

Wow. So yeah, you really are already a, almost like an expert in this area. I mean, that's fantastic. A lot of people have only just heard about it. And for our listener, just want you to know that I am so blessed that I can see all of the people right now through zoom, and so I can see their faces. And I love that I can see Henry smiling. And so, I will share that with you whenever I get the chance here. So, when you considered participating with Sarah, how effective did you think that this would be to reflect your actual genuine perspective of what it means to live a day as Henry Evans?

Henry 13:10

Yes, very familiar. I was intrigued to see how Sarah would creatively use this new type of filming technique to give the viewer the sense of my being trapped in my body. It was eerie, how well it worked. It worked so well, I actually started to signal to Jane in the film.

Mai Ling 13:27

That's amazing. Oh my gosh, I love that. Now, just to give a little bit of history, in 2003, Henry suffered a stroke like attack. And there's also information on his web page that says this was caused by a hidden birth defect. And he has been very involved with robots for humanity, which also is very specific to robotics. So, Henry is an expert in this UX user interface, user experience part of it, and that is so essential to the continued growth of the industry. But on this podcast, what I like to get is the more intimate personal perspective on this. And so, I definitely wanted to know how did you feel about sharing such an intimate perspective of your daily experience so publicly?

Henry 14:09

I lost all those stages of privacy after spending five months in a hospital as a quadriplegic. So no, this film didn't make me uncomfortable in the least.

Mai Ling 14:21

Excellent. And that makes sense. Most of us do say that, that once you have a medical stay or an experience, you know, you really and Henry's laughing. Yes, I can say that after having two cesareans it was like anybody can come check me.

Jane 14:35

Hang on one second. Henry wants to add something. Y u h Have no idea H how l i t how little s e l e f, How little Self a w a r e, awareness I h a v, I have. You have no idea how little self-awareness I have?

Mai Ling 15:20

Absolutely. And I love hearing your voice, Jane. And I want to ask you that as a spouse and a best friend and a caregiver, how did you feel about opening your home and being kind of exposed to this type of experience?

Jane 15:34

I'll be very honest, it was, it's overwhelming sometimes. Because of all the little details that you have basic basically, I keep Henry alive, everything I do is to keep him alive. And sometimes things go down the wayside because of something. But the way I always approach things is what is the purpose of this? I'm not into it for fame, or glory or anything like that. But if it is to give people hope, if it is to give people another perspective, to give people compassion and empathy, then I am 100% on board. And when Sarah approached us, I thought it was an amazing project. And I never dreamed it would turn out as well as it did. In fact, when I saw it, it took me aback, even though I'm with Henry every second of the day, to see it from his perspective and know how he was before I had to fight back the tears  I really did.

Mai Ling 16:30

Aw. That's beautiful.

Jane 16:32

It was eye opening,

Sarah 16:34

I would just like to add, they were really amazing to work with. They were very open. I mean, I know that they had done some media before. So maybe they were sort of like comfortable with that setup. But I was trying something new. Like I, this was the first VR project I made there weren't like, this was a very, very early VR technology. So, we actually shot it more than once with different cameras. And so, they're very, like, open to not only the storytelling side of it, but also trying new technology, which is kind of seems like Henry's really comfortable with but not everyone would be comfortable with.

Mai Ling 17:13

That's a great point. And how about for you, Sarah? So, being new to this area of the VR recording? What about you coming into home with people who are dealing with a major disability, you know, how, what was your comfort level with that?

Sarah 17:26

I mean, everyone was just pretty open with each other and willing to try new things. And yeah, I don't know, it was it was an experience, it was a little bit experimental. But I was local. So, it was fairly easy for me to get access to what I needed technology wise there. And then, um, yeah, if I had to, you know, try it again, we've tried it again, and they were very patient about them.

Mai Ling 17:55

That's fantastic. I know that even with recording podcast interviews, and I've also done Facebook Lives, people are becoming more and more comfortable with being genuine and transparent in front of the camera, right? I mean, it's, it's, it's the days of selfies now, you know, where people are more comfortable, and not having to be so perfect. And this is a bit of a spontaneous question for Henry because I did not send it to him pre planned. But Henry, did you in any way think that you needed to portray a certain type of persona, and I just said, perfection, I'm sure that you've come a long way, you know, in who you are, and what you are communicating. But as you were going through this, did you did you think about you know, how important your role is in this and how you wanted to portray yourself

Jane 18:38

I a, m, w, h, o, I am who I am, I am why I am me. And, and I d did not T h think I n e I needed to be e to be anyone else. I am who I am, and I did not think I needed to be anyone else.

Mai Ling 19:12

Excellent. I absolutely love that. You know, we don't always look at the journey that people take to create something. And this is what the show is all about. And I hope that our listener is really understanding that the, the journey is not always you know, from start to finish easy, simple, fast, you know all of that. But having a true sense of self is what we find is so important. Because as you're creating, you know, there are so many other challenges that are out there that you know, still dealing with sense of self is difficult, in and of itself, right.

Mai Ling [Sponsor Ad] 19:46

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Mai Ling 20:37

Now, let's get back to our amazing interview. So, Sarah, let me ask you what have been the feedback that you've gotten?

Sarah 20:44

Oh, it's been amazing, it's been really different than sharing a regular film. Because normally, when you share a regular film, you send it off to a film festival, there's an audience you do a q&a after, this is really different. Because to share it, you had to be pretty hands on with people. So, I would like to bring a bunch of headsets with me. And I would help people learn how to use them. And then I was really there while they were like experiencing the piece, and then they would talk to me after. So, I got like a lot of feedback from people. It was very personal. And that was really moving. I think there were like a couple events that we shared it at. But also, just like one on one sharing with people that I know, it was a lot of people's first time seeing a VR piece at all. And so, there's like that factor as well. But I think the story really resonated and the fact that there's some interactivity in it, like there's a section where the user gets to experience that I board chart and spelling out a letter. And so, I think that really like was unique to people.

Mai Ling 21:49

And I love that. Oh my gosh, I love that. So, does Jane interpret also as he's doing it?

Sarah 21:56

Yeah. So in the piece, you're asked to like spell out a word to like, move the story forward, and there's like the chart, but when you're wearing the headset, you actually get to move your head and like, look at the different letters to spell it out. And that was a way that we integrated Henry's like experience, but also you got to participate in some way.

Mai Ling 22:16

Brilliant, Sarah, Oh, my gosh, this is brilliant. Was there anything that surprised you in terms of the feedback that you've gotten so far, Sarah?

Sarah 22:25

I mean, it surprised me sort of how challenging it is to share a piece like this, because you need the whole setup. So, a lot of people are like, Where can I see it? How can I see it? And it's like, if you don't have this one type of headset, it's like, it's not quite exactly the same experience. And so that part was challenging to figure out.

Mai Ling 22:44

Can we expand on that? So, what exact headset do we need, so that we can experience this as a first-person user?

Sarah 22:50

So, I built this piece for the Oculus Go headset, which is a mobile VR headset, it's like one of the less expensive options for VR. And I was like in an incubator program that helped me develop this project through Oculus. And so, they gave us these headsets, and they're like, build something for it. And so that's kind of how it started. But I also liked that it has some like limitations on movement to like some headsets or room scale. And you can walk around and like, pick up things. And this one is a little bit more limited, but actually works really well with this particular story.

Mai Ling 23:29

That's excellent. So, let's dive into that a little bit. So, this competition that you were in exactly where was it? And when was it?

Sarah 23:35

This was, I want to say like 2017, possibly. But Oculus has a program for emerging creators called Oculus Launchpad. And so, you submit an entry. And if you're accepted to the program, they have a boot camp, and then they give you several months to like to develop a prototype. And if they really like it, you can get some grant money to complete the project. So, I went through that program. And it was a huge learning curve, because there's a lot of technology I was not familiar with and had to learn. And yeah, we built a prototype and we want some grant funding, and we're able to complete the project. It took longer than I thought, but it was great to have that kind of support. There's like a community of other creators and you can, we're all kind of figuring it out together. So, I was really able to get input from people and move it along.

Mai Ling 24:30

How exciting and do you have any plans to do any future VR movies specifically related to disabilities?

Sarah 24:38

I've been teaching about VR production for a couple years now. And I love working with my students. I teach a VR for social change course at Emerson College's LA program. And so, they're often coming up with ways to support nonprofits. The stories totally vary year to year we were trying to do on like a virtual reality career fair this year, which I would have loved but it actually like didn't happen because of COVID. But I think there's just a lot of possibilities for using VR for storytelling, for social change for putting people in different scenarios. And I don't have any specific plans at the moment, but I'm just interested in the space. And I'm excited to see where it goes.

Mai Ling 25:21

Well, excellent. I'm so glad that you've pioneered this. And I hope that more people are delving into it. And definitely using the all of the other new virtual reality and augmented reality technology that's out there so that more people can experiencing it. Jane, was there anything that changed for you and your family since the movies launched?

Jane 25:42

Trying to think has anything changed? Oh, he wants to add, so, Mai Ling, I want you to know this, there's been a few times when he when he rolled his eyes up, that means he wants to board. And we didn't want to interrupt you before, but I know he was dying to say something. So just kind of heads up on that one. Um, let's see, w e, we, a, r, we r, t, s, si, you, we are used to A, E, H O s house filled with r, e s e research. d e. r researchers on D. O, do doing I n, n innovations. So, it's not uncommon, for example, for us to have some grad students here for maybe a week or more. And you're doing all kinds of new innovations with robotics or different things like that. And again, as a caregiver, I asked myself, you know, because somebody's got to feed him. Somebody is keeping the house clean. It's keeping Henry up to speed. It's all of that. And so, again, I asked myself, What is, is this worth it? What is the purpose? And absolutely, absolutely, it's 100% worth it. So Has anything changed since, since Sarah came on board and all of this? No, nothing's changed just out one day at a time, you know, but, but it just, it just warms my heart of the audience that she's reaching, and the impact you're having. Because as a caregiver to Henry 24 7, it had such a great impact on me, I had to hold back the tears, though, I can only imagine.

Mai Ling 27:39

Wonderful.

Sarah 27:40

It's been a couple years now since we did this project, and people are still reaching out to me about it often. So, I mean, I think that's just the nature of VR. I think people are sort of like discovering virtual reality and exploring, like what's out there, and they come across this project, and then they get excited about it. So, it's been like, not super linear. But it's been exciting to see that they're still interested in it.

Mai Ling 28:07

Of course, there is. And I'm so excited that I can. I found it, and then I can share it now. And I hope that we can infuse some more interest around it. It's wonderful. Henry, now that it's out there, what are your ultimate wishes for anyone experiencing this with you and your family?

Henry 28:20

I really hope that understanding my experiences portrayed by Sarah will cause people to take a moment and appreciate their own abilities.

Mai Ling 28:30

Excellent. Absolutely. And Sarah, how can we plug in to the movie and continue to support you and everything that you're up to?

Sarah 28:39

Sure, there's a website called beingvr.co. And from that website, there should be links to follow what's going on with the project. And if you have an Oculus that links to the store, it's a free download. So, if you have an Oculus go, you can download it. Feel free to reach out to me if you're interested in doing some sort of screening. And yeah, that's probably the best place to go.

Mai Ling 29:06

Okay, and Jane, how can we stay in touch with you and Henry,

Jane 29:09

Best way to stay in touch with us is probably email. So, my email is J Evans, E v a n s 31103@gmail.com (jevans31103@gmail.com). And Henry is H. Evans, E v a n s, the number 1000 at gmail.com (hevans1000@gmail.com). But I think what's really important is to check out his website, which is R 4 h.org and its R for Robots, the number 4, H for humanity.org (https://r4h.org/). I am so proud of him. He taught himself HTML, while laying in bed and put together this website. And it's really everything that he has done. And there's even his blog, with years of Depression and not wanting to live anymore. And our oldest son said, Dad, you've got all these emotions trapped in you write it down. And that's what started his blog (http://hevans-hevans.blogspot.com/). And I know a lot of healthcare providers, nurses, doctors have reached out to us and thanked Henry for sharing that because it enabled them to better understand patients. Um, you want to say something, Henry. A l s, also c a s t, c h, also catch m my t. e. Ted Talks (https://www.ted.com/speakers/henry_evans). Yeah, his TED talks are also on that r4h.org.

Mai Ling 30:44

Okay, I just have to say that using a letterboard. He's like, Oh, yeah. And catch my TED Talks. How awesome is that? I'm sure that everybody's listening. This is just fantastic. I'm so blessed. Thank you, Henry. Thank you for that beautiful smile. Jane, thank you for joining us, Sarah, thank you for your visionary ideas and work to get this forward. Thank you so much. I'm really this has been an amazing episode. And I thank you all.

Jane 31:06

Thank you, the honor is ours.

Sarah 31:08

Thank you.

Mai Ling 31:10

It was my absolute pleasure. Thanks so much for joining us for this episode, and I invite you to connect with me directly at mailingchan.com. We also want you to let us know what you think about the show, ideas and how we can continue to help you or referrals to a great guest through our Facebook group at Exceptional Leaders Podcast or email us at xleaderspodcast@gmail.com

Martyn 31:31

Yes, Mai Ling I totally agree to that I know we're both really mission driven people. And for me, it's always been this big mission to have a world that's fully inclusive for all people. And in the end, that's probably why we've bonded and come together, so well on this podcast, exceptional leaders podcast (https://podcasts.apple.com/us/podcast/xceptional-leaders-with-mai-ling-chan-martyn-sibley/id1435433350), because we get to meet cool people, give them a platform to share their story and really just make such an impact in the disability world. I love it. Also, for everyone listening please do head over to disabilityhorizons.com. This is the magazine that I co-founded about 10 years ago and we've got a free mailing list there for all the latest article news and discounts for the shop if that's your kind of thing. And definitely, definitely do get your copy of the Becoming an Exceptional Leader book. We want you to get as much information as you need and to be as successful as you can be.

Mai Ling 32:30

I'm going to I'm going to stop the recording there. Go ahead and say something Henry.

Jane 32:34

T s h o, show, I h e, show her. N o, no board. Okay, go ahead and say something. Um, can you see me? Yeah, I s ask me a r s, a q a question, asked me a question.

Mai Ling 33:00

Oh, my gosh, that was amazing. So, for, I'm going to keep this rolling here for anybody who is interested in AAC and is knowledgeable about letter boards. And Henry and Jane just demonstrated no letter board at all. And he was just moving his eyes into the areas where those letters are located. And she was able to translate that just right out of thin air. And that is the beautiful connection when you're with your soulmate, your best friend, and I'm just so happy for you guys. Thank you.

Jane 33:30

Well, and we also have what we call his censoring of that letterboard so sometimes when he's mad and he's spelling out a curse word or something I can translate it to I love you so much, Jane. Absolutely great for marriage.

Mai Ling 33:50

Fantastic. Fantastic. Okay, so I'm going to stop the recording here. Don't go anywhere, guys.