Behind the Scenes of Hadley's Adjusting to Vision Loss Series

Hadley Presents

Behind the Scenes of Hadley's Adjusting to Vision Loss Series

Presented by Ricky Enger

Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger inviting you to sit back, relax, and enjoy a conversation with the experts. In this episode, we discuss Hadley's series on Adjusting to Vision Loss, and joining us are Hadley staff, Douglas Walker and Ed Haines. Welcome to the show, both of you.

Ed Haines: Hey, thanks, Ricky.

Douglas Walker: Yeah, thanks. It's great to be here. I've known you and Ed for a long time now so it's going to be fun.

Ricky Enger: Well, and people know you as well. At least anybody who has an Apple product is certainly familiar with your voice, Doug, and you are our co-director of research and development. For anybody who doesn't know who you are, why don't you just take just a couple of minutes and introduce yourself?

Douglas Walker: I am the Co-director of Research and Development and responsible for new concepts and some new content design and creation. I love it because I get paid for thinking outside the box. So that's kind of a fun job for me.

Ricky Enger: Yeah, absolutely. And Ed, you're no stranger to Hadley Presents, but for people who may not have heard you yet, give us a bit about yourself.

Ed Haines: I'm Ed Haines and I'm the Chief Program Officer at Hadley, but the vast majority of my career has been spent in the living rooms and kitchens of folks out there in the field who are working out their journey with vision loss. It's fun to be here today. It's really fun to be talking about this really important topic.

Ricky Enger: Absolutely and it's kind of funny that we are here to talk about something that Hadley itself has created rather than talking with outside guests. And I almost feel like this is a “Behind the Music” or a sort of documentary because we're talking about the creation of a series and just kind of diving into why we chose to create the series and sort of what we hope to come out of it and what things were like as we went through that process.

And I think this is an incredibly important series that we're talking about, adjusting to vision loss. And I don't know, Ed, maybe you can just kick us off by talking about what was behind the decision to create this. Why did we need to do it?

Ed Haines: As a vision rehab therapist, it’s been always my professional experience that functional adjustment and emotional adjustment to vision loss really go hand in hand and Hadley has a vast array of functional adjusting themed workshops out there that are helping tons and tons of people.

For most folks who are dealing with vision loss, emotional adjustment and functional adjustment have to occur together because if you don't have the emotional adjustment component you may not be open to the functional strategies for adjusting. And if you don't have those good functional strategies, you may not have the resilience to really effectively emotionally adjust to vision loss. So, we had done a great job with all of our great workshops on how to do just about anything you'd ever want to do. But we really wanted to tackle a, just as important, but more difficult component is how do you emotionally come to the point where you do feel like you can do anything you want to do? So, the two have to go together. You can't have one without the other.

Douglas Walker: For me, this series is super important because people with visual impairments are so isolated and it's not just COVID. I mean, the lack of the ability to be able to drive and such, you're really isolated in a bunch of ways. I mean I grew up in rural West Tennessee. I didn't know anyone else like me. I mean I knew no one else with a visual impairment, and so I hid my visual impairment for a really long time. And losing vision really is a huge grieving process. And like we actually say in one of the scripts in the series is its loss. It takes a lot of time to go through this loss process. And for me, the adjustment series is so important just so people know that it really is going to take time.

Ed Haines: The other fact of the matter is that most people lose vision gradually, right? I mean, it's not like the movies where someone just suddenly loses all their vision. And the problem is then that every time there's a level of vision loss that same adjustment process has to be gone through over and over again. So, this is never a one-shot deal.

People have lost, they adjust, they move on and they have more loss and they adjust, they move on. It's a topic that you don't master. You have to continually revisit it. So, Doug, I'd really like to talk about how we got to where we are now with this finished series, that's been so successful and the ratings and the comments we're getting from learners are just over the top. It's not easy to talk about adjustment and to talk about these issues in a workshop format.

Douglas Walker: You know, it sort of landed on my desk, the scripts, and there were four scripts in the series. The idea was that this needed to feel more like a conversation like you're having a conversation with somebody. And a lot of Hadley's content is that way now. I mean, the Apple videos have been that way for a long time, like you're sitting there with somebody actually working through something. So, we decided to approach it that way. Like you're not alone and you're just sitting there talking with a friend and you're not being fed information. You're just part of a conversation there.

The scripts had already been developed by a content expert and something that a lot of people might not know is that everything that we do at Hadley is very scripted. We want to make sure that everything's covered. You're going to get all the information you need because it's all valuable information and we want to make sure you get it.

And so all of this goes through so many review processes and multiple review processes. And so the scripts came to me, I was asked to sort of put them in my voice so that they would sound like me, right? And so as I was going through the scripts, I started looking at them and actually adding my own experiences and thoughts to the scripts. Honestly, it was extremely emotional for me because like you said earlier, Ed, these things, they circle back around. You have another small loss of vision and all of these same emotions come crashing back in. So, in reading the scripts they hit really close to home, they brought up a lot of these old emotions and so we tried to put those things in the script.

The idea was to kind of tell these as if they were more of a story than just giving information. So, it's me telling the story and then we decided to use it so it's not just me talking to you, it's sort of like little vignettes of what's happening in the story to sort of help tell the story along. So that's how we sort of approached this new concept and how it all came about.

Ed Haines: And it would not have been as effective. And we tried, we tried an instructional approach. We tried more of a conversational approach, but it wouldn't have been as effective if you hadn't undertaken the role of a companion. And I love that word companion. I've used it in my profession a lot when you help someone. The word companion is actually French for one who breaks bread with another. And I think that's really what we had to embody in this. It's not just someone who's going to tell you what you need to feel or what the steps of adjustment are. But actually, someone who's going to sit down with you and share your experience and I think that's what you did really effectively.

Douglas Walker: I tried to, in sitting there doing the scripts, I imagined that someone's there with me and I'm instructing them how to do that with technology or whatever. This was a little different because of the emotional thing. You had to feel like the person's there with you.

One thing that we sort of felt, just having somebody to give the information to you without these vignettes and stuff that's going to be really difficult, Joan Jaeger, who's our Chief Marketing Officer, she had worked with a group called Altus who specialize in turning video - they're a video production company - they specialize in turning video into animations. And so, she brought this idea to the team.

We started looking at it and so what you get is, at the beginning of each one of these workshops or videos, is me talking and it's me as looking like I do and I slowly turn into this animated person, and then everything from that point until the very end and then I turn back into a "regular person," normal person. I don't know how normal I can get there, Ed, but turn back into me at the end anyway.

So, there's a couple of reasons that we did this, and we thought that this might work. We thought that the animations could allow us to sort of separate the emotional aspects of this from the person that's in the video. Sort of makes the content a lot easier to absorb because it is such an emotional thing. I think it does a good job of that.

Ed Haines: I think so too. I mean the participants who've taken the workshops have all indicated that the subject is so intense that it's so easy to get maudlin when you're talking about grief, for instance, right? So, I think the visual does a great job of providing that kind of compassion and warmth, but just a bit of emotional distance so that people don't feel like we're trying to elicit sympathy.

Douglas Walker: Sure, so doing that was one of the reasons and the other was to attempt to sort of represent a visual impairment. Of course, we all know I have a visual impairment. Somebody may have the same visual impairment I do. You're going to see a little bit different. So, nobody sees the same, but it was meant to sort of also kind of represent a visual impairment. And I think we really hit the mark on this because when we did our initial pilot testing of this, we actually had somebody say, "This is how I see the world," and was really excited about it. So, I think we hit both aspects of that. We sort of helped to distance emotionally from the content with the animations and also sort of represents how it feels or looks to have a visual impairment.

Ed Haines: And I'm glad you mentioned the pilot testing in there too because this was a series that not only went through a lot of reviews, but we actually really tested it with the demographic. It was important to make sure we hit the mark. Doug, I was just thinking maybe we should just talk about the four components of the series really quick, just so folks know what we're talking about. The first one is obviously coming to grips with vision loss and maybe you could just elaborate on that a little bit.

Douglas Walker: Yeah, the coming to grips is one that really speaks to all of the emotional aspects that go along with a visual impairment or losing vision. And I think you hit it right on the head earlier, Ed when you said that "It's not just a one and done." I mean, you're not done with one of the emotions and the process and that your emotions will kind of ebb and flow over time and the hopes are, is that the tides will be a little smaller and a little slower, but that they're going to happen over and over. So that's the first one. That's the Coming to Grips.

The second one in the series is Tools for Talking About Vision Loss. This one really gives strategies for being able to talk with family, friends, and even your grandchildren. I think there are strategies in there for that and partners and neighbors and everything. And people sometimes don't know how to share or how much to share. It speaks to the fact that it's usually best just to give facts, to begin with and that you don't have to share all the details. And the fact that people are going to be really curious, but they may be afraid to ask questions. So, you can almost give them permission to ask questions and those kinds of things because people are curious about it and just share all the cool things like the magnifiers and all the little gadgets that help you to compensate for your visual impairments. So that's the Tools for Talking About Vision Loss.

The third one in the series is How to Partner to Build Skills, and this is really important. This is a little bit different than the other three that are in the series because this one speaks actually directly to the partner or the family member and caregivers and stuff like that.

This talks about how to give the person space when they need space is one of the key things that are there. But, also at the same time, know when to step in if you might find that help is needed because one of two things can happen. Somebody can jump in and want to feel like they do everything for the person that's new to vision loss, or they step all the way back and just don't know what to do. So, this gives a lot of strategies for how to do that, how to give directions, don't just point and say, “It's over there.” That kind of deal, it's that you kind of give directions of down low by the fridge and stuff like that.

The fourth one in the series is actually, I tell you when I told people about this one and there's always almost like a gasp, like, "Oh, I can't wait for that one." Yeah, I love this one. It's Asking for and Turning Down Help. Even for me, this is one I struggle with at times because there're times when I don't want to ask for help. I want to do it, but I probably do need some help with stuff. And then there are times when I ask for help when I probably could have done some things on my own. And I think it's cool because we sort of outlined three things that you can ask yourself, and I'm going to put myself on the spot here, trying to remember these things, but there're three things at the very beginning that we say that you should ask yourself.

I think one of those is, "What am I able to do by myself?" The second is, "What do I want to try to do by myself?" And the third is, "What do I actually need some help with?" And so, if you're honest with yourself and you ask yourself those three things, asking for help and actually being able to turn it down will be much easier. So, this one's actually, I shouldn't pick a favorite, but this is, I think is my favorite in the series.

Ed Haines: I think that's not surprising because it's exhausting sometimes to figure out when you need help when you don't. And if your vision's changing too, there're lots of instances where maybe six months ago you didn't need help, but maybe now you do. And you have to constantly make those judgment calls about when it's necessary and when it's not. You mentioned a little earlier about how really impactful or sort of difficult it was to make these for you personally. So, what was that experience just like, I mean, you did this in the middle of a pandemic, so how did this happen?

Douglas Walker: It's interesting that this wind came up in the middle of a pandemic, right? Because I live in Nashville. I don't live in Chicago despite the accent, you may think I live in Chicago. But I live in Nashville and if something came up, I do most of my production here in Nashville, my own, but this was actually shooting me talking at a camera and I would typically fly into our production studios there in Winnetka, just outside of Chicago. This was like you just said, this was during the height of the pandemic. So, what I did was, and I mentioned this earlier, we worked with a group production group called Altus who did the animations and everything. I worked with them, and we did this all over video conferencing software, like Teams or Zoom, that everybody's using today.

This group sent me a lot of stuff that I'd never dealt with before, studio lighting and different microphones, a huge green screen that was behind me that I sat in front of. So, I had to kind of figure out, with their direction - got a lot of help from them, how to set everything up. And my wife actually helped with some of the setting up of the lights and moving things around and everything. So yeah, I listened to their direction, and it was fun because people don't know I usually listen to the scripts, they're read in my ear, and so we pushed the scripts in my ear. So, looking at the camera, trying to figure out if I'm all lined up and everything. But the cool thing was that I wasn't alone. It was the middle of the pandemic. I was shooting this by myself in the studio. Altus was actually directing me over Teams, this conferencing software. And so, I wasn't alone, it was me by myself in a room, but there were four other people on a computer walking me through this and guiding me through this. So, they gave a lot of comfort in the making of it. So, I learned a lot about video stuff, that's for sure.

Ed Haines: I just think it's amazing that you have the voice, and the voiceover is done so well, but yet you did that at the same time while you were listening to a script in your ear and you're listening to directions from somebody on Zoom. That's a lot of listening and talking effectively all at one time so that's pretty impressive, I think.

Douglas Walker: Yeah, it was a lot of fun. I've had a lot of practice listening to the script over the years, but it was different having somebody talking in my ear at the same time that I'm listening to the script. Like looking to your left or this and that. So yeah, a lot going on in my ear at one time. But it was a lot of fun.

Ed Haines: Well, I'm glad it was because it definitely worked. This has been actually, in terms of impact, I think our most popular series outside of braille since it launched. I mean, it's just been getting tons and tons of traffic. And I recently got a call for instance, from a director of a blind center out in California who also is losing his vision right now. And he called and he said, "Ed, I got to tell you, this is the best thing I've ever seen on this topic in my life." So, in terms of impact, I have a couple quotes.

Folks are allowed on our platform to leave comments about series. And so, I've just collected a few that I thought I might share with folks because it just illustrates what a difference this series has made. The first person says, "It's really been helpful to hear repeated the fact that this journey in vision loss is a grieving process that takes time to adjust to." Another rehab therapist says, "I love this. I want to share this with every client I have. Also, great, not only to hear but to see the famous Doug Walker." Another person wrote, "Although I've been adjusting to low vision for 14 years this workshop remembered how much I've progressed in learning and implementing new skills for daily living. Although I still have moments of frustration due to vision loss. It no longer consumes my day. I like the reminder: this is a normal feeling, but it doesn't define who I am. Thank you."

Douglas Walker: Wow. Certainly, these were created with the thoughts of somebody new to vision loss when we created them. It's just somebody that doesn't know the steps they're going to go through and the things they're going to go through. So, I love the fact that just sharing those and hearing those makes those hours of sitting in front of the lights and scripting and all that kind of stuff, yeah, so worth it. But when we pilot tested this, we sort of knew that we had something really special then.

Ed Haines: Yeah, I think we did. We really did. And I'll share with you just one last quote, because I think it just says it all and this makes the whole, for me, if it's only this one person that was touched, this makes it all worthwhile. This individual wrote and said, "This is the first time I've ever heard somebody understand what I'm going through." So, there's a connection right there that you just can't put a dollar amount on. It was, in my mind, worth every penny and then every resource we had and all of your time, just to touch that one person the way that you did, so well done.

Ricky Enger: Yeah. This is so incredibly impactful. And I love hearing about not just what it was like to make it from someone who has experienced it because that's so, so important, but also just how people are reacting and being able to show someone that this is whatever they're feeling.

We all wonder sometimes, “Is it just me? Am I abnormal? Or am I normal?” Whatever that means. And, “Am I the only one who's going through this?” And I think it really helps a lot to know that no, this is a process and there's no exact way that any person should feel. I know that that's discussed in the series as well, that you're, you're going to have just this journey of things that you feel in all of it is okay.

I do think it's important to point out that for, for people wondering, "So where is this thing? I really want it right now. How do I find it?" And of course, we will have a link in the show notes. If you're listening and you haven't created an account on our site, then you'll need to do that in order to take part in this series, among many, many others that we have. So, I definitely encourage you to do that. And if you already have an account, we'll have that link to the Adjustment Series. And there's also just a button under, “What Would You Like to Learn Today?” Adjusting to Low Vision is among those categories.

Ed Haines: Yeah, exactly Ricky, I think it's called Adjusting to Vision Loss, but we also should say that, although we've talked about the visuals and the making of the video, this topic, and this series is also available in large print and braille, so it's accessible for anybody.

Ricky Enger: Yes. So, if you're not interested in being online or perhaps somebody is sharing this with you and you aren't online at all, that's okay. You'll still have access to this material among everything else that we do as well, which is really, really awesome, I think. Any final thoughts that each of you would like to share with the listeners, we'll start with you, Doug?

Douglas Walker: The Adjustment Series is so valuable, and it really does help guide people through the emotions of a vision loss. I tell you; it really is so rewarding to be part of the creation of that series.

Ricky Enger: Awesome, and how about you Ed? Any final things you want to share?

Ed Haines: Just to, again, thank you for letting us talk about this series and again, to echo what Doug said that this is something that I am extremely proud to be even a small part of. In terms of my career, this has certainly been one of the highlights.

Ricky Enger: Fantastic. Well, thank you both so much for everything that you do here at Hadley and for taking a little time to share a bit of that with the listeners.

Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected] that's [email protected]. Or leave us a message at (847) 784-2870. Thanks for listening.