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The Blind Life Podcast
Coping With The Emotional Side of Vision Loss | Joan Jaeger Talks About A New Hadley Workshop Series Ep. 52
00:34:23
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- [00:03]
A
Welcome back to the Blind Life podcast. You know, normally on my channel, we spend a lot of time talking about assistive technology, adaptive tools and strategies for living with vision loss. But today we are talking about something just as important, the emotional side. In this episode, I am joined by Joan Yeager from Hadley to talk about their new workshop series focused on coping adjustments and the emotional side of losing vision. It's a really important conversation and I think a lot of people, people are going to connect with it. Let's jump right in. Hello, Joan. Thank you so much for joining me. I really appreciate it.
- [00:42]
B
Thanks for having me. I'm looking forward to it.
- [00:44]
A
Yeah, I think this is a great topic and we've been talking about this back and forth through email and I know that Hadley as a whole really thinks this is an important topic. I mean, you guys built this whole series around it. So I'm definitely excited to talk about it. But first, if anybody is unfamiliar, would you mind just kind of giving this broad overview of what Hadley is and what they offer?
- [01:10]
B
Great question and I'd love to do so. So Hadley Sam is a hundred year old organization in 19. It was founded by a gentleman named William Hadley. And William was a high school teacher in Chicago. And over the course of a weekend, he lost his vision completely due to detached retina. And he, you know, found himself quite adrift. He was 55 years old. He was trying to figure out what to do with the rest of his life and he found very little help. And so the one, one very fortunate thing for William Hadley is that his neighbor was his ophthalmologist. He had seen over the course of his practice that what would happen to many older adults losing their life, their vision later in life they would fall into depression and their life would shrink and they would feel like there was nothing they could do anymore. Right. And he didn't want that for his friend and neighbor. Right. And so he did three really very important things for Bill. He, the first thing he did is he talked to the other neighbors and said, don't stop calling on Bill, don't stop inviting him simply because he can't see anymore. Right. He's still Bill. Right. That's really important. The second thing he did is he learned from Bill himself what was he, what was he grieving the most with it, with life right now? And for Bill, he was, you know, he was an avid reader. He was a teacher. Right? He was. And so, and he read books in all sorts of languages even. And he had this library that he intended in his retirement to delve into. And those books were useless to him now and that just gutted him. So they got to talking and Dr. Brown said, well, there's other ways to read, Bill. You learn braille, you can read again. And it was really hard for him to find someone to teach him braille, but he did find, find some, some tutorials basically. And he, he taught himself braille, basically. He was an educator. He kind of knows, knew how to learn things. And so that he had that advantage, right? And that made a huge difference to him. He felt like, okay, like I'm still part of life, right? I'm not, not, I'm not going to just sit here in the corner, right, and have everybody do everything for me. I can still do things, right? That just was huge for him. And then the third thing that his ophthalmologist helped kind of brainstorm with his neighbor was well, okay, you know, what a difference it made for you now to learn a new way to read. There's lots of other people out there, bel, who are facing the same thing you are and they're feeling like their life is over. But you know how to teach people too. So you, you now have a new skill and you have the old skill of your career, which is how to teach people stuff. Why don't you combine the two and you can teach other people out there who are feeling adrift because they can't read anymore, teach them how to read again. Right? And so that literally that was the nub of Hadley was really reaching out to people and never people coming to this office. It was always, it was braille by mail basically it was a correspondence school. So that's the history of Hadley back in the 1900s. But fast forward into, you know, the 2020 time and we really clearly knew that there was a target audience that was still not being well served. Older adults who as you know, are the majority of people facing vision loss, there were precious few, precious few resources for them, as you know. And so we decided to step into that gap and offer our services quite specifically to older adults who are facing vision loss later in life. What can we do to help them? And we understood very specifically what was needed. And it falls into two camps. One is kind of how to things, very practical things like how do you pour your coffee if you don't have central vision, right. How do you answer a phone if you don't see the screen very well? Right. And so that's what we, we charted out to do these how to videos, we call them workshops on our platform a headly help study.org but it's just those practical things, everyday things that, that could be helpful, you know. And then the other thing we, we found, and I. Once again, I hadn't anticipated it is that there's a real gap in emotional supports where oftentimes, you know, they're the. The pressure on somebody who has lost some vision later in life is to, you know, learn some new skills and, you know, get on with your life. Like, that's fine. You know, it's almost. I hate to put it this, this bluntly, but like, get over it. You now can do it a different way and just get over it. Right, Right. You're good at this now, you know. You know, just, just, just. That's it. And it. We knew and we heard that there was. That's. It's a loss, Sam. You know, people feel the loss and you can try to deny it, but it's still there. You feel it. And oftentimes, if you're just denying it, you're using a lot of energy there trying to deny something that could be better said, better spent just admitting even to yourself that this is hard. And I really wish I weren't going through this. Right. And maybe finding one other person or a couple other people that you can share that with. It's an emotional release rather than just pretending that everything's okay. So we learned that is through talking to people and then tried to decide how are we going to address that. Right. Because that's trickier than a how to video. Right. And we wanted to make sure we did it with integrity. And so we. The very first thing we did is, you know, set up an 800 number our for Hadley staffed with experienced social service professionals. Right. So when they're answering, you're never going to get a bot. When you call Hadley, you're going to get a person, right. And they're going to ask what. What it is you're. You're struggling with. And if it is a very practical thing, we'll match you up with one of our workshops and you're on your way. If it's. I just really don't know what to do. Right. And I'm feeling really adrift and I'm struggling here. We. We may suggest a number of different things. It might be. Would you like to talk to one other person, like a peer who has. Has a lot in common with you and you just talk on the phone for as long as you want to talk on the phone with this other peer. They're not a Hadley employee. But we have a matching ability that is pretty good to match people with, you know, common interests, common kind of personality types and outlooks on life. So we have that peer to peer program. We have a podcast called Insights and Sound Bites. And I don't know if you've heard this one. Oh, yes, you. You've been on our. Thank you for doing that, by the way.
- [08:34]
A
My pleasure.
- [08:35]
B
You know, the premise, it's. It's, you know, a little bit about yourself and about your, you know, your vision situation. And then, you know, anything that is a little bit tricky for you, a little bit difficult. Right? Not on and on, just some things. Right. Just real being real about it. Right. And then one thing that helps you. Right. One thing that makes a difference, maybe it's a perspective, maybe it's a person and whatever. It just something that helps you when things get tough. So that show has turned out to be super helpful for a lot of people because you can just hear the authentic voice of members of the Hadley community that are all facing vision loss, that are struggling with different aspects of that and things that they personally found helpful. So that's the second thing we decided to offer on the social or emotional support side. And the third thing we did was like zoom meetings in small groups, maybe 10, 15 people. And this is led by one of our social workers. And it's really having people get the chance to talk about the fact that they're facing a loss with each other. And they basically address things that social workers would address with people facing any kind of loss, like loss of a husband, loss of, you know, employment or something that you were grieving the loss of something emotionally. There are very common techniques that social workers help. Help you think about and maybe practice in order to work through the emotions associated with that loss. Right. And so those are eight weeks, you know, like every Tuesday at 10 o', clock, 10 to 11, for eight weeks in a row with a. With a group of people, same group of people, every single, every single one of those weeks. And those have been super successful. And, and what I hear over and over and over again from people who, who have gone through our adjusting and coping together, that's the name we have for that zoom group, is that they feel just like a burden has been released from them because they aren't holding it all in right. And they're sharing it with other people, truly get it right. And they're not trying to fix each other's problems. They're just saying, yeah, this is how I feel too. All right? And so what we decided to do is combined our Insight and Sound Bites podcast with the kind of clinical advice or, you know, coping strategies that are given in the. In the small groups, and we combine that into a video series we're calling Coping and Adjusting Together. We launched it in the end of January, and it has been by far the most impactful thing Hadley has ever done.
- [11:36]
A
Yeah, I've noticed that. Based on the comments, I think a lot of people are really resonating with the videos.
- [11:42]
B
You know, it's one of those things when you're putting it together, you kind of have your fingers crossed that it's going to land the right way. Especially on this topic, it's tricky. You don't want to condescend, you don't want to preach. I want to make sure we are treating this very important topic appropriately. And what it points out to me is that it truly is a gap. There are very few resources out there that talk about the loss, the emotional part of vision loss. And so I'm so very glad that we were able to do this.
- [12:17]
A
Yes, and you're absolutely right. As I mentioned, I work at a nonprofit and I run the assistive technology and training program. But we also have a peer support program, as a lot of low vision centers do. And I always. The AT tends to get a lot of the limelight. You know, everybody's coming in, they want to learn how to use their phone, how to use their computer, that sort of thing. But I always say that I think the peer support is way more important because it's difficult to start working on those systems and those strategies and the assistive technology and the adaptive equipment and stuff. If you haven't first taken care of that emotional side or at least started to address the emotional side.
- [13:03]
B
100% agree with you. I 100% agree with you.
- [13:06]
A
Yeah, yeah, yeah. So I think it's fantastic, and I love that, that you guys are, Are. Are taking a very well. I mean, as I said before, I work with the technology, and it's very. Someone comes in with a problem, I, I can't see my television anymore. It's very. Okay, well, we have options. You could try A, you could try B, you could try C. Nobody knows how to be low vision when it happens. Right. You have to learn from someone else. And that also goes for the emotional side of the whole thing.
- [13:36]
B
It does. It really does. And it is just, unfortunately, emotions in general are hard to talk about and rarely talked about here, and depending on your age group, even less likely to talk about or maybe your Gender or your way of life even less likely to talk about, and that it does you no favors by not doing that, by not addressing it, by not even recognizing that there isn't. There is an emotional component. Right. Doesn't mean that it's, you know, going to stop everything and you're going to be in the doldrums forever. That doesn't mean that. It just means that you're recognizing it and saying that matters. And oftentimes, as I said, it's what helps you get through it.
- [14:21]
A
There's all those, those very popular sayings like it takes a community or it takes a village. Right. Or steel sharpens deal. And all of those are. The root of it is that you cannot do it alone. And I, you know, it's been proven time and time again, trying to deal with these types of feelings and by yourself alone, isolated is not good. You really need to get into a group with your peers and learn from others who have gone through it before and have the answers. That reoccurring theme comes out very, very often in the. The workshop videos of that once I opened up and got the advice from others, maybe through the Hadley peer support system, it made things so much easier.
- [15:09]
B
Exactly. That feeling like you're not the only one feeling this the other piece. And it's interesting you talk about tech, because I also hear this a lot. I think it ends up also fueling then makes it harder for people to admit that they're struggling with something is, well, it shouldn't be that hard. Right. So even, you know, I should just figure this out and then they're feeling stupid and you don't want to ask for help because you should already be able to do this. Right. It's been, it's already been six months or it's already been a year. I should already know how to do this. This should. And it's putting that pressure on yourself that you should have figured this all out. There's tools there. You should just use that darn phone. Right. It puts a ton of pressure on the person, and that's not helpful.
- [15:56]
A
Yeah. Yeah. And I agree. A lot of that, I think, goes to the generation you're from. You know, I, I work a lot with seniors losing vision later in life, and they have that, you know, if I can't figure it out myself, then I just don't. I'm just not going to do it.
- [16:13]
B
Exactly. And so that's our part of audience. That's who we serve as well.
- [16:18]
A
Mm. Yeah. And you guys, you recently did a podcast With Ricky Anger. The. The Hadley Presents podcast. You guys did an episode about this workshop series, the Adjusting and Coping Together series, and it's a fantastic podcast episode. I'll link it down below.
- [16:36]
B
Oh, perfect.
- [16:36]
A
Thank you, guys. One of the things you guys touched on, which I talk about all the time with my clients, is that hesitancy to ask for help.
- [16:47]
B
Yeah.
- [16:47]
A
And how the word. We always hear burden. That word comes up. It's one of my least favorite words in the world is burden. And I love that you guys actually touched on this. The exact same thing that I tell people when I'm working with them. I tell them to turn it around. And if your family member asked you for help, would you consider them being a burden? Absolutely not. And you guys even specifically said, the thing that I say is that humans, we enjoy helping. We get gratification and satisfaction from helping others. And unless you're just an absolutely horrible person, you want to help. We're hardwired to want to help.
- [17:28]
B
We are.
- [17:29]
A
You should never be. You should never be hesitant to ask for help.
- [17:33]
B
Yeah. And yet sometimes that's really hard to do.
- [17:36]
A
So hard for people.
- [17:38]
B
And in fact, Sam, that's the video I thought we could watch. Do you mind if we just try to stream it right here and then talk about it on the other side?
- [17:48]
A
I think that's a great idea.
- [17:51]
C
My name is Ron Peterson. I went to school and studied engineering and had a successful engineering career and retired about 10 years ago. And I began working as a volunteer at the Tijuana Estuary. I loved working out there because I always loved being around nature. So I was planting native plants and removing invasive plants and helping maintain and clear the trails and such. But then about five years ago, I lost my vision to glaucoma. The bottom dropped out pretty fast, and it kind of surprised me. I wasn't really prepared for it. I guess I was in denial. I wasn't able to work at the estuary. It just became harder and harder, and finally I just couldn't do any of that sort of thing anymore. That was very disheartening to me. And I was really in a funk there, Kind of in a deep hole for a few months. Losing your vision can throw you into a bad place for lots of reasons. But not being able to work in yesterday was certainly one of them. One of the things I learned was I would ask for help. I'm one of those guys. Through the years I'm driving, I get lost with my wife, and I'm going to find my way. We're going to figure this out, Henry, that ask someone. But one of the things you learn when you're blind is you need help, and you have to swallow your pride a little bit. And I learned to ask for help, and I learned places to go to for help. So one of the things I did was I talked to the staff there at the estuary, said, I want to continue to volunteer here, and I love. I love these plants. What can we do and how can I help? And together we came up with this perfect solution that I would become a docent, and I would guide visitors in sharing the beauty of these native plants using the other four senses. Besides, vision turned out to be a big hit. What it did for me was amazing. It gave me a sense of meaning. And that was a very important part of how I climbed out of that hole to regain my life, to develop a full life once again. For me, it worked.
- [20:38]
D
So let's take a moment and talk about asking for help. When you've lost some vision, even the most ordinary of things can become harder, Especially early on. Things you used to do without even thinking. Now take more time, more effort, or feel nearly impossible. Take grocery shopping, for instance. Suddenly tricky. Spotting a stain on your shirt from that messy sandwich. Good luck. Even trimming your nails can turn into an exercise in frustration. And then there's asking for help with these things. That can be the hardest part of all. And let's be honest, for many of us, asking for help has never come naturally. As Ron shared, he was never the type to admit he needed some help, even if that meant driving around lost for hours. He just didn't want to ask. Vision loss or not, some of us are just wired that way. Now add in the emotional weight of asking for help with tasks that might seem kind of trivial or more personal in nature. Things like finding the right restroom or making sure your blouse matches your slacks. That can feel even more uncomfortable, right? You worry you'll come off as helpless or incompetent, so you hold off. You don't ask for a hand, even when you could really use one. Instead, you struggle for hours trying to do the thing yourself. Or maybe you avoid the task altogether. Or do you secretly hope that someone notices you struggling and steps in to help without being asked? And when they don't, do you feel disappointed, Even hurt? On the other hand, sometimes when someone does step in to help, they may go a bit too far. They mean well, but tend to take over. So instead of feeling supported, you end up feeling sidelined, maybe even a little patronized. And this can make you even more hesitant to ask for help the next time you need it. But here's the thing. There are ways to make asking for help a little bit easier. Let's start with this reality. Losing vision can really shake your confidence. Feelings of frustration, sadness, even resentment are likely to arise, so you might feel irritated that you even have to ask for help in the first place. This is all completely understandable. Knowing that these feelings are part of adjusting that alone may help soften the edges of the the situation. Next, try to notice the moments when asking feels especially hard. What is it about that moment? For Ron, it was his pride getting in the way, pure and simple. Maybe that rings true for you too. If so, you may want to consider asking for help not as a sign of weakness, but as an indication that you were to going growing through this, a small but powerful step in adapting to this new chapter of your life. Another thing that can help is to think ahead. Who are the people you can trust? For certain tasks, you may want to talk to them in advance. Let them know you will likely call on them from time to time. That way, when the moment comes and you reach out for their help, it feels more like a plan and less like an intrusion. And when you do ask for help, try being specific about how someone can help and when it's okay for them to step back. For instance, you may need help finding the dairy aisle in the store, but once there, you'd prefer to be left on your own to take your time sorting through things. A simple thanks, I've got it from here can go a long way if you're out in public. At a front desk, for instance, you can say something like I don't see very well. Could you help me with these forms? Or I have low vision and I'm not sure where the room is. Can you help me out? You don't need a long explanation. Just a little background info will likely get you the help you want. And if it feels a little awkward, don't be afraid to bring in some humor if that's your style. Whether it's navigating the stalls of a restroom or figuring out your makeup, laughter has a way of easing tense moments. And here's something else worth in general, people like to help. Really think back to a time when someone asked you for help and how good it felt to be there for them. Now, if you're dealing with someone who tends to do too much, you know the type. It's okay to speak up calmly. Let them know what's actually helpful and what's not. They're probably trying their best, but they may not understand what you need. So take the guesswork out of the situation, explain a bit more and put yourself back in control. Another thing to keep in mind is, as with many things in life, asking for help actually gets easier the more you do it. Each positive experience helps build your confidence and before you know it, what once felt super uncomfortable starts to feel, well, natural. Lastly, the next time you catch yourself hesitating to ask for a hand, take a moment to ponder what might be waiting for you on the other side of that request. For Ron, asking for help meant keeping a volunteer role he loved. Instead of walking away, he reached out to the staff at the estuary and together they came up with a new way he could volunteer. That conversation opened a door for him, a door that led to a renewed sense of purpose and his vision loss didn't stand in the way. But it all started with one simple question. Can you help me?
- [26:46]
A
That's so good, so good. So much great information and I resonate with that so much. Even, you know, 39 years now being visually impaired and being fully confident with asking for help, I still struggle with some of those things. The, the young lady was talking about there at the end, standing there hoping someone will take pity on me and come over and help me. That one really got me because I still find myself doing that and I still have to step back and like, Sam, knock it off, just go over there and ask for help. And you know, one thing I also want to add too, is that, you know, she talked about how it can be difficult, especially, you know, I'm sure Ron, Ron was a, was a, was a big, tough guy that wanted to take care of everything by himself. And when he got to the point where he had to ask for help, he, his pride got in the way. And I would say, I would also add that asking for help is getting it done. That's, you know, think of it that way.
- [27:48]
B
That's a really helpful way to look at it. It's getting it done.
- [27:51]
A
I'm getting this job done, whatever I need to do. That's what I've always done and I'm still doing it now. And that means asking for some help. But that's so cool.
- [27:59]
B
That's a really good way to frame it. Yeah, yeah. So I, I felt like just showing it versus talking about it. It could be very powerful, right? So, yeah, Ron Peterson, you know, established, very successful engineer out, out in California and used to being like doing everything. He was the go family, right? And then all of a sudden it was like, oh my God. Everything felt very, very impossible for him. But, but love that he figured a way out by asking for help.
- [28:32]
A
Yes. Yeah, I, I, I give a, I, I do a keynote speech and in my keynote I have this clip from another disabled content creator who has cerebral palsy. And, and in the clip he talks about a time in his life where he had to ask for help from someone. This was a big, big job, a new job. And they said, is there anything we can do? And he had to ask for some, some reasonable accommodations. And apparently it was one of the first times he'd ever had to do that. And he was terrified. And he finally did, he, he got up the courage to ask for it and everything turned out great and it was fantastic. And one of the, the ending quotes to his clip that I love and is why I included in my, my speech is he says, on the other side of acceptance is empowerment. And I'm like, yes, that's how I want to live my life. I want to, you know, and once you do now, once again, it takes a while to get there and everybody
- [29:31]
B
has to, it does take a while
- [29:32]
A
to navigate those waters and yeah, and they have their own journey to get to that point. But once you do, a weight is lifted off your shoulders and like Ron said, you know, you can get back to doing the things you love and enjoying life.
- [29:46]
B
Yeah, right. Because as we were talking about, you know, older adults who, who are newer to this experience had been, you know, even dreaming of the things that they wanted to spend their retirement on and they can still do that. But you, but it's not, it's not just, oh yeah, learn this new tool, but it's also emotionally adjust listening to this, finding coping tools. And then when you feel this way, just think about this one thing that can just help you the same. It's a, it's another tool in your toolbox.
- [30:17]
A
Yes, yes. And I love that these videos, this series, this workshop series is available for free too. We should.
- [30:25]
B
All for free.
- [30:27]
A
All for free. And they're available for the, the person to go back and re watch them over and over and over again.
- [30:33]
B
Over and over and over again to
- [30:35]
A
be reminded and reinforced.
- [30:37]
B
Precisely.
- [30:38]
A
Exactly.
- [30:39]
B
And we even have it, we have it available on DTB because not everyone is tech savvy. So it's important to know that you could also order this as a dtb. Hadley has another new thing to talk about and the Adjusting and Coping series is on it. We have an app, we're going to be fully launching this in May. But you have a little sneak peek here and if you go to your, you know, to the app store and type in Hadley helps, you'll, you'll see that Hadley has an app. And what, what we realized, Sam, is you know, the data was showing us many people, more than I expected, to be honest with you, were, were consuming Hadley workshops and podcasts on their phone. I kind of assumed that people would get the largest screen possible. They would be on a desktop and it. But no, they're on their phone like 60%. And so, you know, the phone experience isn't the greatest. You can still, we are all, all of our stuff you can watch on your from our website. You can, you can, you know, go on to hadleyhelps.org and navigate around, but it's not optimized for the phone like an app would be. Right. And so that's why we knew we needed to make sure that that was done. And so now all of our, all of our workshops, all of our little how to videos are on the app as well as, you know, link to, you know, the 800 number. Just one, one push of a button and you're going to get to our 800 number and, and be able to talk to one of our self service professionals about anything you might need. You know, a link to our Hadley Insights and Sound Bites podcast as well as these, these new videos adjusting and coping together. It's all on our app.
- [32:23]
A
Yeah, it's all about giving people options. Right. They can go on the computer if they want to, but if they want to do it on the phone, that's great.
- [32:28]
B
Right? Right, Right, right.
- [32:30]
A
That's fantastic.
- [32:30]
B
And why make the experience less than when so many people are choosing that as their first? Right. So that's why we knew we needed to fill that gap and launch an app.
- [32:39]
A
Excellent. Well, on that note, why don't we really quickly go over all the ways that people can get in touch with Hadley if they want to. Hadleyhelps.org is probably one of the main places. But what else?
- [32:53]
B
The very first thing you know, our 800 number, which is answered by our social Service Professionals is 1-800-323-4238 and then hadleyhelps.org of course, as you were saying, you could find our podcasts on anywhere you like to listen to podcasts. There's two of them. One is called Hadley Presents and that's more on the practical side. It gives tips and, and advice on how to navigate through the world with vision loss. And then the other one is called Insights and Sound Bites and that is more on the emotional adjustment side and you can find both of them anywhere you would find a podcast, including also on our website and then our new app.
- [33:36]
A
Hadley Helps is the name of the app, right?
- [33:38]
B
Hadley Helps is the name of the app too. Yep.
- [33:41]
A
Available on iOS and Android.
- [33:44]
B
Available on iOS and Android. Yes it is.
- [33:46]
D
Awesome.
- [33:47]
A
Awesome. I always like to see that. A huge thank you to Joan Yeager for joining me and a huge thank you to everyone at Hadley for all the amazing work they're doing to support the blind and low vision community, not just with practical skills, but with the emotional side of vision loss as well. If you'd like to learn more about Hadley and their workshops, podcasts, peer support, even the new Adjusting and Coping Together series, be sure to check out Hadley Helps links in the description down below. Thanks so much for listening and as always, keep living your best blind life.