Friendships often change when one has vision loss. Whether it's adaptations to the activities you enjoy together, asking for help, or turning that help down … there are conversations to be had. Let's tune in as two Hadley members, Eugenia DeReu and Tara Perry, share their experiences with what's changed for them — and what's stayed the same.
Hadley
The Impact of Vision Loss on Friendships
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, Hadley's Director of Community, Marc Arneson, along with Tara Perry and Eugenia DeReu, join us to discuss the impact of vision loss on friendships. Welcome to the show everyone.
Tara Perry: Thank you.
Marc Arneson: Hey, Ricky.
Ricky Enger: Hey. So glad to have you all. I think we were establishing new friendships just before we started this recording, which is always good.
Eugenia DeReu: Yes.
Marc Arneson: That is cool.
Ricky Enger: We're talking today about friendship and how that can change along with vision changes that you're experiencing, and it's something that people ask about a lot. One of the things that we really appreciate being able to do with this podcast is showing people that these experiences that you're going through, it's not just you, it's happening to other people, and here are some tips for navigating that. I know we're going to have a great conversation. Marc has some excellent questions lined up. Before we jump into that, why don't we just get a brief intro from each person and then off we go. Marc, you've been here before, so make it quick. We'll start with you.
Marc Arneson: Okay. I'll do my best to make it quick. I do a variety of things here at Hadley, but one of the things I love doing and one of the things I get a chance to do is, is to visit different groups and go to conferences and stuff like that and just share about all the things we're trying to do here at Hadley to help.
Ricky Enger: Fantastic. And Tara, how about you? Tell us a bit about yourself.
Tara Perry: Well, I'm Tara Perry and we're talking about friendships today and vision loss, so I will describe my vision loss a little bit. I have retinitis pigmentosa and would consider myself pretty much total. There are days where I might be able to tell if it's daylight or maybe not, if it's cloudy or overcast, which is great because I can always just think it's sunny, even if it isn't. And I think talking about friendships, probably even more important for me to know is that I'm an introvert, so that impacts friendships as much or more than my vision loss at times.
Ricky Enger: Definitely. As much as I talk for a living, I'm an introvert as well, and so I know that forcing yourself in some cases to be more outgoing than you are naturally can be a little bit of a challenge. Eugenia, tell us a bit about yourself.
Eugenia DeReu: Yes. I am 62. I'm in the Buffalo, New York area. I lost my vision a few years back, I had a brain tumor size of a baseball in the middle of my forehead, and we didn't really know it, so I started losing my vision before that and I just ended up with surgery and it damaged my ocular nerves. I'm legally blind, I'm not fully blind, but it's not going to get any better, it's just going to continue to get worse, so that's where I am with that right now.
Ricky Enger: All right. Well, thank you all so much for the intros. I'm looking forward to learning about how you all are managing these friendships and just some tips that you're willing to share. With that, Marc, I know you have some great questions, let's get into it.
Marc Arneson: Yeah, thanks Ricky. Okay, so first question. Can you remember a time when it was difficult or maybe uncomfortable to tell your friends about your vision loss? And then just the second part to that, how did you decide to tell them and how did it go? How about you Eugenia? Have you had that kind of experience?
Eugenia DeReu: Well, I had separated myself from my friends a little bit because I wasn't functioning mentally because of the brain tumor. And with my family, I will say I was afraid to tell them that I was having trouble because I'm the one that pulls it all together, I'm the one that did everything for everybody. I was afraid to tell them because I didn't want to let them down. Then it came to the point where I really stopped functioning and driving, I got pulled over by the cops a couple of times because I was swerving, and I didn't know I was doing it.
I didn't realize at that time my friends were looking for me, they were there, I just didn't know it. They were trying to find out where I disappeared to, and by the time everything happened when I was in the hospital and then found out about the vision, they were still there for me and I just had to come around and realize it. I guess, it was a little different for me too. I can't say they left, they never left, I just didn't know it.
Marc Arneson: Yeah, absolutely. Thanks for sharing. And this next question I have might be a little bit different then. Tara, maybe we can start with you, maybe it doesn't sound like things changed day-to-day on a practical level, but maybe navigating different circumstances became a little different for you. I was thinking about you meeting up with friends for lunch and it's tough to get there with transportation and not being able to drive. I know oftentimes friends like to go shopping together and I've heard sometimes they like to try on outfits and get opinions about those outfits and things like that.
Tara Perry: What do you mean you just heard about that? You mean the ladies?
Marc Arneson: I've heard that's a thing with friends. But I was wondering about navigating some of these situations like transportation and going to the movies and that kind of thing. Can you share a little bit about how you've navigated some of that stuff?
Tara Perry: Oh, sure. Referring back, losing the ability to drive, it does change things. And especially I think for me, it changed things that I would like to have done for people, like run out and pick up soup for a friend who is sick or go pick a gift up or things like that. Then getting together and not being able to drive means everybody's got to come get Tara. For many years I lived in the DC area, and so you can't take that lightly because coming to meet somebody, it's traffic and it's time and it's not convenient, there truly is a traffic problem there. I had to learn that when people would say to me, "I'll just come get you." And I'd say, "Is it okay?" Or I'd second guess, "Are you sure? Is it not convenient?" That’s just my personality, my nature.
Finally, I have a friend that said to me, "Tara, if we didn't want to do it, we wouldn't. And if we didn't want to do it, we wouldn't suggest it. So could you just say yes and thank you?" And friendship is a two-way street, we learn from each other. And so, they come get me, they do tease me, "Oh yeah, Tara never drives, blah, blah, blah." That kind of thing. I'm very fortunate that they come. And there are times where it doesn't work out and that's to be expected and that's okay too. But they've always been very willing, even if it hasn't necessarily been a convenient travel situation or traffic situation or those kinds of things. I love what you're saying about the outfits, because it’s news to me, not everybody does that Marc, I don't know.
Marc Arneson: Maybe they do. I'm the odd one out.
Tara Perry: So, with friends I've had for a long time, and with new friends, it's a joke because yes, Marc, we do go in, we like to give each other critiques about our outfit. I have been told more than once, "You're not very helpful." "Do you have an opinion?" I'm like, "Yeah, just look in that mirror." Usually, I'm pointing to the wall that doesn't have the mirror, so I'm not helpful that way either. And for me, I wish I could say because nothing like, I call it the good girlfriend advice that lays it down the line and says, "Don't go out in that." Or "That one's going well or so." Again, it's the dynamic. I think your thought about the movies, for a long time, people just thought, I wouldn't want to go.
Again, it's getting to that conversation of, "Do you want to go, or do you not want to go?" And not taking it off the list just for the assumption. I might sleep through the action movie and usually if people choose those, I'll say, "Yeah. It might be a great nap for me." But if you have one with dialogue or things like that, then... We make those choices together. Once we've had that initial conversation of, "Oh sure, let's go to the movies," I'll bring that up instead of having someone else have to do it sometimes. So, changes that you negotiate.
Marc Arneson: Yeah. I was curious, are those things that you're comfortable bringing up with your friends or are they comfortable approaching those kinds of conversations with you, do you think?
Tara Perry: I think with the friends I've had for a long time, we're both very comfortable, that's just part of our friendship. I've had to learn as well how to be more helpful to them, because they don't live with this vision loss every day, and I do. And so, with new people, I have found it to be easier for me just to bring it up and say, "Hey, I like to go to the movies. Is there an interest there?" Or going to go eat and trying to figure out do I say, "Can I ride with you, or shall I meet you there?" I find it easier just to try to be open about those things with new people as much as I can gauge and try to do that.
Marc Arneson: That's good advice. Eugenia, how about you? Have you had to negotiate some of these different events and things that you go do with your friends?
Eugenia DeReu: I have. And I agree with Tara. First it was difficult to ask people or say, "I just have to figure out the ride." That's what my famous statement was, "I just got to figure out my ride system." You go to doctors, you go anywhere, movies, just for a cup of tea or something. I have to say, I've had to accept things. People want to give you rides, they want to help you, and I've had to accept it, because again, usually I'm the one saying, "Hey, let's do this. Let's do that." Like Tara, I do bring up, "I love movies." I grew up on them. I don't want to miss that, and I can't see everything, but I can hear it and I can pick out those actors better than anybody that's sitting around me because of the voices and everything, I enjoy it. And so that part, yes.
A couple of things I learned through becoming legally blind through my state. They gave me help and I didn't know it was there. They gave me the opportunity to know there was a van system that will get me places and a lot of things. There's even an ATM, you could put on earbuds, and it'll talk to you. You plug it in, and it'll talk to you, if you are at an ATM. It has the braille system. A movie theater will have, I don't know, they'll have earbuds, I guess, that will help you hear, or it'll talk you through it, "Oh, so-and-so walked across the street."
Ricky Enger: Yeah, audio description.
Eugenia DeReu: But nobody else can hear it. Nobody else can hear that. That is something that I've learned with friends and family. A family member, this is the other side of it, always says, "Oh, I'm her Uber." It's funny in the first moment you say it, but after you've said it a thousand times, it makes it on the embarrassing side. Again, they're helping me, so what can I say? But I guess the acceptance of that, it's the loss of the independence. It's a lot of getting through that, it's an emotional factor. With friends, they are there, they've been there, and they do help me, they want to help. I have accepted that and it's like you're back to normal with, I just don't drive anymore, but I still do a lot of things with my friends.
I've made myself do that because sometimes people don't know how to react to illnesses or vision loss, they just don't. And you're trying to navigate it yourself, but you're trying to help them navigate it too. It's a journey for all of us. I think that acceptance for me is a lot of it. But they're there for me and it's just getting through it, I guess. I've gone back to a book club that I didn't think I'd ever go back to, and that has been some big friendships that I have with five of us. It's only five of us, but it's something that I relied on, and we've all figured it out.
Marc Arneson: Thanks for sharing. And Eugenia, just when you mentioned the Uber comment that you made, I'm going to jump a question. Are there any friendships that didn't last because of your vision loss that you can share? I'm wondering about even difficult moments that you've had to encounter with friends and how do you navigate those? Like you said, the first time it was funny, but after a while it's no longer funny, and you just want them to stop saying that.
Eugenia DeReu: Yes.
Marc Arneson: I wonder, are there other moments like that where you've had to have conversations with some of your friends that were maybe a little bit difficult?
Eugenia DeReu: It is, but you know what? I don't want to hurt somebody's feelings, so I am cautious. Even though I don't believe in their hearts, they're trying to hurt me by saying it, I have found myself swallowing it a little bit. My sister, I'm going to tell her because she's my sister, I'm going to say, "Okay, the Uber thing has to end." But saying that, she gets other people to say it, we joke, and this is probably not a good joke. But my family, my husband, and my daughter that lives with us, you have to hold on to people, you have to have them guide you sometimes. I call them my seeing eye dog. We could laugh about it, but other people may not. But the Uber thing, I don't know, friends are more gracious about it than family sometimes. They're willing to help you almost too much. Where do you put those boundaries? Friends are always there to help. But like you said, there's so much to it, there's so much emotion to this that you just have to get through. I know it's on everybody, but there's really a lot that you have to deal with yourself and nobody else can do it for you.
Marc Arneson: Thanks for sharing that. Tara, how about you? Friendships that went by the wayside because of your vision loss? Or have there been challenging or difficult moments that you've had to figure out together?
Tara Perry: Yeah. I was just thinking as Eugenia was answering, that for me, so much of that conversation is so dependent on my level of trust. Again, I'm very fortunate, I've had some friends for 40 years and many for 20 plus, and those friends, it's easier for me. But that's been over time, and it's been over experiences, and it's been over interactions. I tend to have to work to the point where I can be open and say, "Okay, this is something I'm dealing with. Or can we talk about this together?" So, it can take a long time. Oftentimes I found with friendships, I think there's a whole continuum of what those look like. I don't know what the terminology is, but acquaintances to good friends, great friends, best friends, whatever that is a continuum.
So, for me, how much I delve into those conversations really depends very much on what that relationship is and what that level of trust is. If I don't foresee that that friendship's going to move forward very far, maybe I just don't say anything, which isn't very helpful and that may not help the friendship move forward. Actually, that may be on my part, not beneficial. We have had some of those conversations along the way, and many of them seem to come up naturally. I think also based on the friendships being different like any relationship, I might have a different conversation with one friend than I do with another just based on what our interactions are like, even trying to get the same point across.
I think the more recent thing for me, I've now had vision loss for 31 years, and with RP, I had acuity for a while. Then it went to losing that acuity and having light perception and then losing light perception to the point where, again, as I said earlier, I described myself as total. So my newer challenge is figuring out that some things aren't very enjoyable, and it might be things that we've done for a long time together and I have to be able to say, "Hey, that's a very visual thing, or that's something we've always done before, but I'm just finding that it's not very enjoyable at this point." I'm really having to work through that and then come up with other suggestions or other ways, but taking that risk to be honest and say, "Maybe you could do that with someone different and we could do this together.”
Marc Arneson: I think that's such a good point. I appreciate you bringing up the level of trust that is needed in the relationship, often that just comes with time. Eugenia, you brought up this idea of boundaries, and I thought maybe we could just talk a little bit about this, and if you guys have some thoughts to share, I'd love to hear them. But I've just heard from folks that oftentimes friends can want to do everything for you. Maybe they're sometimes being overprotective or maybe it's the other end where they're not so thoughtful about your vision loss. Have you ever run into that at time when you've had to establish a boundary with one of your friends?
Eugenia DeReu: Yes. Definitely. I think that when people find you have this vulnerability, they think it's something. I don't find it a weakness; I find that I have to find the positive in it and find it as a strength that I can adapt to my vision loss. I am a strong person, I'm an introvert also, and it's hard to get that across to people, "Okay, I want to find that independence, so don't grab that door for me." I have a lot of people when you're walking along, "Oh, there's a crack there. Oh, there's a crack on the sidewalk. Watch the door, watch this, watch that." And I think, if I fall, scrape me off the ground. I appreciate it to a certain degree, but there are some people that cannot stop, and I know their hearts are in the right place, they're just trying to help me, but it doesn't really help. It holds me back emotionally.
You have to establish some of the boundaries. Again, I think it's an education for them. And even when I went through vision therapy, they said, "When you're holding onto someone's arm, they're helping you. You don't have your cane with you, you're holding on somebody's arm, you have to train them how to do it." They want to do it their way, so I'm like, "Oh, no, no. Lift your arm up for me, put it down here and I'll hold you." For the most part, I've been lucky. I've only had one friend, as I was walking behind, and I think I was actually in the wheelchair still with vision loss and slammed the door in my face.
Marc Arneson: Oh, no.
Eugenia DeReu: Yes, that was a very close friend. But she didn't think about it, she didn't see that I was just Eugenia, I was the same person I always was. In one way, you can say, "Well, she didn't see my vision loss and the problem, I was just Eugenia, still the same person." The door in the face was a little bit rude. It's not just friends and family, there's a lot of people that don't know how to deal with somebody that has a disability, I don't know what anybody wants to call it, but there are a lot of things out there that you have to figure out.
Marc Arneson: So true. You're absolutely right. And I love how generous you are, they're all well-meaning and good-hearted.
Eugenia DeReu: They are.
Marc Arneson: But sometimes they can be... They can rub you the wrong way.
Eugenia DeReu: Sometimes you like to give them a little slap, but they do have good hearts. I know that. I've been very lucky, my friendships that, and as Tara said, the older friendships, they just came back like it was no big deal. We just were adapting to things, I still feel the love, the friendship. But there is trust to a certain degree, what Tara was saying with the vision. I still have some vision. And there's a trust that you really have to find with people. I thank God for my friends because I do trust them.
Marc Arneson: Thanks for sharing that. Tara I'm curious, the same question, do you have friends that have wanted to just do everything or maybe overprotective or on the other spectrum where they haven't been so thoughtful and if you’ve had to set boundaries around some of that stuff?
Tara Perry: Yes. And again, I agree. I think people are well-meaning. I truly can think of three instances in my 30 plus years of blindness where interactions have been negative, and those haven't been with friends, those have been with just people you might've run into. I think for me, the odds are that usually when people are doing something, it's coming from a good place. As Eugenia has said, it might not be an informed place, but it's usually a good place. And so, I have people that tell me that your greatest strength is also your greatest limitation, and mine is being independent. And well, other people call it stubborn, so take your pick, whatever word choice you want to choose there, whatever fits baby.
I find that is where most of my boundaries are, I want to do things myself. I've been independent forever, and I don't see that changing. And sometimes I can be a little stubborn about that, I guess, if you will. I have had some situations where I've had to just say to someone, "Hey, please don't do it for me." Or "You're helping me too much." I was trying to think of very specific examples. For several years I owned a horse. When I first was working with a horse, I just wanted to learn to do that on my own. He could see, what could be the problem. He could see fine. And a friend of mine, and I don't remember what he was doing, but he remembers to this day that I finally just looked at him and said, "If you keep trying to do everything for me, you cannot come back." Now. I probably said exactly that.
Marc Arneson: He doesn't remember it that way, exactly.
Tara Perry: I probably did. We're still friends. And I get it. That particular situation, there is more risk, horses are big and they're not always going the way you're going, and you can't see where you're going. But we worked through that and hopefully I've learned to say things, "Let me try this." Or "I need to be able to do this today to feel good about something." I've also had to learn when it's okay to just step back. And I've had my friends have to set boundaries with me, and it hurts my feelings a little bit, and that's not their intent, but sometimes they say, "Tara, at this point, it's a little easier if we just do this and then we can move on to something else. But you're wanting to help is not necessarily helpful at this moment." That's not something I want to hear. So, I think it goes both ways. I have to set some boundaries, and I've had friends set some boundaries with me because of that need to help and not recognizing sometimes that this may not be the moment for me to do that.
Marc Arneson: Eugenia, I heard you jump in a little bit, have you had that similar experience as well?
Eugenia DeReu: I have. And I agree with Tara. I think you have to set the boundaries and so do the people around you. I have a lot of people that try to do too much, and you do have to say to them, "I'm good. I could do this." And I do get, I always say my snarkiness with people because they're trying to do too much. I try to be nice about it, but sometimes you have to be a little firmer with people and say, "Nope, I got it. I'm good." And I always throw out that I'm trying to be more independent. I'm trying to be independent, and sometimes people do back off a little bit. And I am trying to be, but then I also had to learn, I do have limitations, I have to let them step in and help me. And that has been a big thing. It's just a juggling act, you have to figure out as you go through it. Again, I know Tara has been through this longer than I have, so she's probably better at it than I am, I don't know.
Tara Perry: No. Don't go there.
Eugenia DeReu: I don't know.
Marc Arneson: Well, it's such a good point though, because I think when I was posing this question, I was thinking the boundaries that you have to set with other folks, but I guess I wasn't thinking that it goes both ways. This is a friendship, and so sometimes it is hearing suggestions and ideas and maybe boundaries that your friends are setting as well. That's such a good point that I think that you both made. Okay. Now that I'm shifting a little bit here, how about friendships that you now have because of your vision loss, you gained these friendships or relationships? Has that happened for you guys, or can you share a little bit about that? I don't know who wants to jump in. Eugenia, do you want to start us off?
Eugenia DeReu: Yeah, sure. I have one. I know it's a funny one. When I finally started getting my brain back in order and everything going, and I was stuck at home, and I went back to Facebook, and I have friends in different states that we lived in. And so, I started getting back to that. And I know when I was feeling better through all my rehab and whatever, I put on a dress and I thought, "Oh, I really liked the way I look." At that point, I was using a walker, so I took a picture, put it on Facebook, and I got a response from somebody named Babet, and I don't know a Babet. And my Facebook is private, it's not public, so I was like, "Oh, thanks Babet." She says, "Oh, you look great. You're doing great." So then through that friendship, we kept talking. She has a group called Positivity that she organized. She’s a nurse, she's in ministry, she's a wonderful person, she invited me to join it. I have been with this group for two and a half years, with all these people.
I even have a friend in Italy. I've never met any of them, but they've prayed with me, they've cried with me, they've gotten me through some moments with my children. They are a big part of my healing with everything, including acceptance of many things. That was the newest friendship. My old friendships came back, especially through Facebook because we were able to talk to each other again. But Babet is a new one. We still to this day have no idea how we connected, so it's one of those mysteries. I think some divine intervention came down and I needed this group. They pulled me through a lot of trauma that I had at that time and we're still going for each other. I found a purpose to help other people through that. That is a friendship I cherish.
Marc Arneson: That's wonderful. What an amazing community. Just hearing you talk about it is...
Eugenia DeReu: They're great people.
Marc Arneson: Getting all goosebumps.
Eugenia DeReu: Yeah. They're really great people.
Marc Arneson: And you hear about all the challenges with social media and the things that happen, but to hear a story like this is really cool. Thanks for sharing that. Tara, how about you, if there are friendships that have now become part of your life because of your vision loss?
Tara Perry: It did, and it has, and fortunately, it continues. When I was losing my vision and things were happening so quickly way back when, I got introduced to a site loss support group. And this is critical because I had that support then, and probably never since then until more recently again, so it's funny that way. I wouldn't have met them otherwise. I was probably new to some of this vision loss stuff and really learned a lot from different people. They helped me get through that. And it wasn't a very long period, because I was only there as a part of that group for about a year. And then I started moving to different places for my career, and I kept living in places where I often was quote unquote, "The only person who was blind that I could find or anyone else." For so many years, literally for the next 30 years, I lived in places where I actually didn't have access to a support group.
But prior to the pandemic, we didn't have all the virtual access that we have, so I just didn't live in, [inaudible], was a possibility. And then my most recent move, I reconnected with some of those same people and those years weren't there in between, and still have that same connection with many. And it's just been such a gift to have people back in my life and who know why things come and go. But I've always had a belief that at the time in your life, there are people there for a reason and some people stay, some people leave, some people come back. And that's the beauty of it. To me, there's a flow to it.
I don't know if my friends would agree with that, but I do, so hopefully. And then I've also met people throughout life that I know I would never have met had I not had vision loss and just so many situations. It's really been in situations where people have just been willing to help or those kinds of things. And I thought, "Wow, I would never have met you if I had driven myself to the store and picked out my own stuff." Or whatever the situation was, where that help occurred. And we may not have become friends, but for that timeframe and those moments, it was incredibly helpful and valuable to me.
Ricky Enger: Wow, what a great perspective and what an interesting thing that the vision loss itself was something that brought about the friendships. As you say, it was a positive thing that may not have happened if you still had your sight and could drive yourself somewhere or what have you. I'm curious, this has been a wonderful conversation, and as we wrap things up and bring it to a close, I'm just wondering if there's anything about your friendships now, either in who your friends are, how they came to be there, or how you approach friendships in general, is there anything positive that vision loss has done in terms of impacting your friendships?
Eugenia DeReu: I believe it gave me a different perspective on people's, I don't know, weaknesses, what people call weaknesses, which again, I don't, but I think it has helped me be more sympathetic to people and my friendships. I guess I didn't realize how much love I have through these people. And when they find out what you're going through or what you have been going through, they show me that they applaud the steps I'd make forward. They go through the ups and downs with me, but that's the positive that I have that support system with my friends. And I guess, that to me has made me stronger.
As long as you're willing to accept that, and like you said, do boundaries, I could go into a store and if I'm trying to figure out this ATM or do those, I don't know what those little lines are, where it beeps at you, the clerk behind the counter is willing to help me, and I think it makes them feel good too. And that makes me feel good that I may not be happy that I'm blind or whatever, I'm adapting to it, but I like to be happy. And overall, I guess I think with friends, I think it's become stronger for me. I think those friendships... And it helps me get through the day-to-day because the positive is what I need. And I don't know if that answers the question or not.
Ricky Enger: It does. It just speaks to the fact that everybody has some kind of vulnerability and being willing to show that to one another and find out, "Wow, it's not so bad." As you said, it's not a weakness.
Eugenia DeReu: It's not a weakness. Vulnerability is a better word. Yes. And you're not alone.
Ricky Enger: Tara, how about you?
Tara Perry: Well, I was trying to think. I feel so fortunate to have my friends over the long term, really only a few that knew me when I could see, but again, so many of them, we've gone through that transition together. And so, I just think it's so fortunate that people are willing to stay with you through that. And specific to the vision loss, I think about this not only in terms of friends, but just in terms of people. I hope when I had my complete sight that I could just take a person for who they were, if you will. And I think that's the beauty of losing your vision is really that's all you have. All those visuals that we see, all those non-verbals, you don't have those anymore, so you just interact with people as they come or whatever they offer.
And for me, that's a wonderful thing. It means you just start out on the same place with everyone, and you build from there. So, it either builds based on your interactions or it doesn't build based on interactions. But I've always thought if there was a gift in vision loss, it was to be able to take away judgment.
Eugenia DeReu: I love that, Tara. I love that you said that. It means a lot to me. It's a beautiful statement actually.
Ricky Enger: Absolutely. Wow. This has been an amazing discussion, and I think just even in this small amount of time that we've been together, there's still some processing that happens and some things that we learn about ourselves and each other in having conversations like this, and that's what it's all about. Again, thank you all for joining us, for sharing those perspectives and just being willing to open up and talk about things that might be a little bit difficult. And of course, also to share those positive aspects of friendship as well.
Marc Arneson: Thank you everybody.
Eugenia DeReu: Thank you.
Tara Perry: Thank you.
Ricky Enger: 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.
Vision loss can be emotionally overwhelming. In this episode, we chat with a clinical psychologist who is legally blind herself, Dr. Ann Wagner. She shares how learning from and connecting with our emotions can bring about healing and transformation.
Preparing for a disaster is important for everyone. But for people with vision loss, it requires some extra thought and planning. In this episode, we share some ideas on how you can prepare.
Did you know that veterans are eligible for vision services and equipment through the Veterans Administration even if their vision loss developed many years later and was not as a result of service? Learn more as we chat with a representative of the Hines VA.
Voting can be tricky if you've lost some vision. In this episode, we discuss a variety of ways to cast your ballot, no matter your level of vision.
The Bright Focus Foundation funds research to find cures for macular degeneration and glaucoma, among other conditions. In this episode, we learn about their glaucoma and macular degeneration monthly chats. These sessions with scientists are open to the public and offer insights into the latest breakthroughs, treatments, and promising research on the horizon.
Artificial Intelligence (AI) has a lot to offer people with vision loss. Whether it's reading menus, describing pictures, or even narrating scenery, AI can make a big difference. This week we chat with Steven Scott, host of the Double Tap podcast, about some of the best AI-powered tools out there… so far. Link to Double Tap on Apple Podcasts.
When the doctor says, "there's nothing more I can do for you," what next? Who can help you make the most of your remaining vision and learn how to live more comfortably with vision loss? We break it down for you.
This week we talk to Dave Epstein, the visually impaired creator of the All Terrain Cane. He shares about his life with a progressive eye disease and his love of hiking. These two pieces of Dave lead him to develop his unconventional cane.
When you have vision loss, scams can be even more challenging to avoid. Listen in as we get some tips and tricks from Veronica Lewis who runs a low vision assistive technology website.
Be My Eyes CEO, Mike Buckley, joins us to talk about how this free, smart phone app merges technology and human kindness and how it's now using AI to describe the world in front of you.
Recently retired, David Tatel served for decades on the US Court of Appeals for the D.C. Circuit. He also happens to be visually impaired. In this episode, he and Ricky talk about his recently written memoir, a book about his life as a judge, a husband, a father, a grandfather, and how all of these roles intersect with his experience with vision loss.
This week we talk smartphone tools and when you might want to use the different options. Jennifer Shimon from the Wisconsin Office for the Blind and Visually Impaired joins Ricky.
Sometimes, navigating life with vision loss goes a bit sideways. Things don't always turn out exactly as we've planned, and it can help to just laugh at these strange situations.
We've shared several episodes of listeners' stories, what we're calling vision loss bloopers. Today, Ricky Enger and Doug Walker share some more of these bloopers along with a few of their own.
Prevent Blindness' patient advocacy program empowers people facing vision impairment. Patients learn how to promote change with their physicians, their families, drug companies, and even policy makers.
Ever thought about getting a guide dog? Listen in as we chat with members Jeff Flodin and Ed McDaniel about their experiences with guide dogs and some common misperceptions.
The National Library Service has a free talking book program for anyone in the US with vision loss. Tonia Bickford, an advisor from Michigan's talking books program, joins us to discuss how to get the most out of this free service.
This week we learn more about visual hallucinations that sometimes accompany vision loss, a condition called Charles Bonnet syndrome.
Sometimes vision loss can make us feel less secure. This week we talk about personal safety with Hadley's Chief Program Officer, Ed Haines.
For many living with vision loss, watching TV is less enjoyable as they can't see what's happening on the screen very well anymore.
Audio description fills the void by narrating key visual elements. Listen in as Ricky chats with Hadley member and avid audio description user, Judy Davis.
Listen in to our conversation with Dr. Mondal, a low vision optometrist and professor at the University of Wisconsin. We chat about what to expect from a visit to a low vision specialist and the kind of help they can offer.
Have you listened to Hadley's community-generated audio podcast yet? In this episode, Ricky and Marc Arneson, Hadley's Director of Community, share a few stories from Insights & Sound Bites and discuss how to contribute your own story. Insights & Sound Bites | Hadley
Listen in as artist Chloe Duplessis explains how a degenerative eye disease changed, and didn't change, her life and love of art. "I thought art required sight. I was wrong."
Dr. Judy Box, a Hadley member living with macular degeneration, shares her tips for managing those important conversations with your eye doctor.
In this episode, the Hadley team talks all things gifts. Giving them, getting them, what's on their wish lists, and how vision loss may, or may not, impact these activities.
Losing some vision can make for shopping challenges. Here are a few mishaps that Hadley members have run into. Have your own to share? Email us at [email protected]
This week we chat with the chief technology officer from Envision as he shares how their free mobile app or camera-enabled glasses can help those with vision loss. It speaks aloud written information, describes surroundings and objects, and even tells you who's nearby.
Lots of questions, concerns, and stereotypes connected to use of the white cane. In this episode, we address several of them from past discussions on the topic.
Listen in as Hadley's Director of Community, Marc Arneson, chats with Hadley members Bill Massey and Gregory Peterson about their participation in Hadley's new Peer-to-Peer program.
To learn if getting a peer connection is for you, call us at 1-800-323-4238.
Listen in as we chat with Ed Haines about getting the most out of our magnifiers.
Listen in as we chat with animal lovers Debbie Worman and Sheri Robinson about the joys and challenges of caring for a pet when you have vision loss.
Listen in as Hadley member, Wendy Spencer Davis, shares why she decided to learn some braille and how it's helping her in everyday life.
Ed McDaniel, a psychologist with low vision, joins us to talk about common emotional triggers people with vision loss face and how to recognize and manage them.
Jessica Grogan from the American Diabetes Association joins us to talk about managing your blood sugar with vision loss.
Tune into our chat with Sarah Clark, a visually impaired marriage and family therapist, as she offers her unique insight into some common family dynamics that often make adjustment more challenging and how to navigate through them successfully.
Join us as we chat with Hadley member, Kris, about her experience living with vision loss in a senior community.
Listen in as Hadley staff share their real-life bloopers—times when things didn’t quite go as planned.
Join us as we take a dive into the features of the BlindShell cell phone.
Listen in as Pastor Scott Himel shares his advice for participating in religious services no matter your level of vision.
Join us to learn about how ScripTalk technology translates medication labels into speech and where you can find a participating pharmacy.
Join occupational therapist from Duke Eye Center, Fay Tripp, in a conversation about bioptic glasses—what they are and who can benefit from them.
Listen in as we chat with birding expert Freya McGregor who shares her tips on how you can enjoy this hobby, no matter your level of vision.
Listen in as Hadley's Doug Walker and Ricky Enger chat about how they use GPS in their daily lives. From walking directions to finding items or assisting a driver by navigating a trip, GPS can be a very handy tool.
Listen in as we chat with Dave Steele about his life, poetry, and vision loss.
Listen in as we discuss some common situations that can make us feel unsafe and share ideas on how to address them. We're joined today by Christy Ray and Ricky Jones of STRIVE4You.Org
Unfortunately, it's not uncommon for feelings of shame to creep in when we've lost some vision. Join social worker Jeff Flodin and psychologist Ed McDaniel, both visually impaired themselves, as they explore where these feelings come from and how they have worked through these emotions in their own lives.
Listen in as Dorrie Rush of OE Magazine shares how she resisted using a white cane for years, the stigma she feared, and the confidence and security she found once it was in her hand.
Learn how CVS pharmacy customers throughout the US can access a free service that reads aloud prescription medication information.
Join us as we chat with author Hannah Fairbairn about the tips and tricks she has learned to take some of the stress out of holiday get-togethers, no matter your vision.
We're joined by the creator of The Blind Life YouTube channel, Sam Seavey. Sam shares his personal journey with vision loss and advice he has for people who are newer to vision loss.
Whether you like to read for enjoyment or need to check your mail, reading is an essential part of your day. We're sharing tips and tricks for how to continue reading, the best low-tech and high-tech gadgets, and the benefits of learning braille.
Chief Innovation Officer Doug Walker chats with us about the launch of Hadley's newest podcast, Insights & Sound Bites. This new podcast will offer short stories shared by listeners. By tapping into the power of our community, we hope to share ideas, discoveries, and moments of inspiration along the journey through vision loss.
Jim Hoxie and Joanna Jones join us to discuss their children’s book, "Grandpa's White Cane." Jim shares how vision loss shaped his life and how he and Joanna, a retired teacher, began instructing children about the importance of white cane awareness and the do's and don'ts for helping people with visual impairment.
Blogger and social worker Jeff Flodin talks about his personal journey with vision loss and how his passion for helping people led him to blog about his experiences.
Hadley has partnered with the National Eye Institute (NEI) to offer a Spanish-language version of our popular cooking workshop series. Devina Fan, director of the National Eye Health Education Program at NEI, joins the podcast to talk more about this new initiative, NEI’s expanding Spanish content, and the importance of connecting Hispanic and Latino communities to important vision resources.
A change in your vision may make some parts of your job more challenging. But with a bit of help and some new skills, you may be able to stay in your job. Hadley Chief Program Officer Ed Haines and Learning Expert Steve Kelley join the podcast to talk about our new Working with Vision Loss workshops and to share tips for where to find support and how to ask for what you need.
Certified accessible travel advocate Melvin Reynolds joins the podcast to share tips for getting the most out of traveling, no matter your level of vision. Melvin gives advice on what to research ahead of a trip, considerations for traveling with a guide dog, and how a certified accessible travel advocate can help.
Karen and Dan Leonetti share how vision loss has changed their relationship and the advice they have for other couples.
Rabbi Lenny Sarko joins us to talk about how his vision loss journey led him to create a first-of-its-kind braille Sefer Torah that people around the country can access.
Actor and artist Bruce Horak talks about his personal journey with vision loss, how he got interested in painting, and his role in the new television series Star Trek: Strange New Worlds.
CEO of Eschenbach Optik of America Ken Bradley joins the podcast to discuss how Eschenbach has adapted through the pandemic to help people with visual impairment access low vision devices remotely. Through their "Telelowvision" program, you can try out magnification devices from the comfort of your home to find what works best for you before you buy.
Scottish radio broadcaster and podcaster Steven Scott loves finding and talking about tech stuff. He's especially fond of apps and gadgets that make life easier for him and others with vision loss.
NYT Columnist Frank Bruni returns to the podcast to talk about his new book. Frank describes his personal experiences with vision loss and how, with time, his perspective has grown.
IT professional and stand-up comedian Todd Blenkhorn talks about his personal journey with vision loss and how his passion for stand-up helped him find and share the humor in daily interactions.
In this episode, we're sharing highlights from previous interviews with a glaucoma specialist, retina specialist, and a low vision doctor. Listen in to learn more about common eye conditions, treatments, and what to expect at these specialist appointments.
Master Gardener Sue Brasel and Hadley's Chief Program Officer and gardener Ed Haines join us for a chat about gardening, no matter your level of vision or gardening experience. They share tips for how to get started, common challenges, and the many benefits of gardening.
We're joined by Carol Mackey, an avid discussion group participant, and co-host Debbie Worman to chat about what Hadley groups are, how to join, and what you can get out of them. With 10 groups on a variety of topics, there's something for everyone. Listen in or chime in – it’s up to you.
Bold Blind Beauty blogger Stephanae McCoy joins us for a chat on beauty, style and confidence. Stephanae talks about how vision loss shaped her life, and then shares some of her favorite fashion and beauty tips.
Hadley staff share their favorite kitchen gadgets and tips. Whether you're an experienced home chef or a total novice, you're bound to pick up a few ideas that fit your vision needs and make your time in the kitchen more productive (and fun).
We sat down with Kim Walker, co-director of research and development at Hadley, and Mark Andrews, one of the Hadley advisors who reviewed our exciting new approach for adults with vision loss to learn braille. From labeling items in your home to identifying buttons on an elevator, braille can be a wonderful tool for everyday use.
New York Times Best-Selling Author, Gretchen Rubin, chats about her research on how tapping into different senses can enrich our lives and connect us to each other in surprising ways.
Twin sisters Jenelle and Joy join the podcast to share their personal experiences with vision loss and adjusting to it emotionally. While they look identical, their perspectives and journeys differ, highlighting their mission to show that "there is no right way to go blind."
Hadley learner Sharon Noseworthy shares tips and tricks for hosting get-togethers of any type or size, no matter your vision. Sharon has always loved the role of hostess and has learned to adjust her approach now that her own vision has declined.
We're joined by Teepa Snow, occupational therapist and founder of Positive Approach to Care, to learn more about the challenges of having both vision loss and dementia. Teepa addresses common misconceptions about dementia and shares practical tips for supporting someone with both conditions.
We sat down with several Hadley staff members and asked them about their favorite tech tips, apps, and gadgets. Whether you consider yourself a tech expert or novice, the group recommends a variety of high-tech and low-tech options that fit your comfort level and interests.
Judge David Tatel has served on the second most powerful court in the country since 1994. He also happens to be blind. Judge Tatel joins us to share his story on building a law career and family while dealing with changing vision, the technology and resources he's found useful, and what made him consider getting a guide dog in recent years.
In honor of White Cane Safety Day today, we're joined by Hadley learner Larry Carlson and Orientation and Mobility Specialist Elijah Haines for a conversation about this important tool. Larry shares what made him decide to use a white cane, and Elijah shares tips for what to consider and how to adjust to using a white cane.
Supriya Raman, manager of the Disability and Multicultural branches of the TSA, shares tips on traveling among shifting COVID restrictions. Supriya covers what to expect at the airport and what resources are available for people with visual impairment.
Photographer Michael Nye chats with us about his latest art exhibit, "My Heart is Not Blind," a collection of photos and audio interviews of people with visual impairment. Through these stories, Michael provides a look into what he calls "our shared humanity and shared fragility," as well as common misunderstandings about blindness.
Champion blind golfer Chad NeSmith talks about how vision loss shaped his life, and how he shares his passion for golf with others with vision loss.
Doug Walker, Hadley co-director of R&D, and Ed Haines, Hadley Chief Program Officer, chat about the making of Hadley's "Adjusting to Vision Loss" workshop series. The series guides people through the emotional aspects of vision loss. Doug serves as the series' personal storyteller and narrator.
In this episode we chat with ophthalmologist Dr. Angela Elam from the University of Michigan. Dr. Elam addresses common questions and concerns, and shares her advice for returning to the eye doctor among shifting COVID restrictions.
Dorrie Rush, OE's Chief Content Officer, joins us for a chat about this wonderful online resource chock full of tips for living well with vision loss. You'll find great articles on using tech tools, tips for health and well-being, stories from others living with vision loss, a terrific podcast, and more.
Learn about a new service that’s just launched in 2020 called Accessible Pharmacy. Accessible packaging and labeling and personalized customer support all free of charge to the end consumer, and specifically designed for those with vision impairment.
Audio Describe the World! That’s the mantra of UniDescription: a free smartphone app that provides audio descriptions and navigation tips for US National Parks and other public places.
In this episode, we chat with low vision optometrist Dr. Mark Wilkinson from the University of Iowa. Dr. Wilkinson answers common questions and shares his advice for getting the most out of low vision optometry appointments.
Jan and Elgie Dow share how vision loss has changed their relationship and the advice they have for other couples.
Join Hadley advisor Eddie Becerra as he shares about losing his sight from diabetic retinopathy, and how he gained a new perspective on life.
Classically trained chef Regina Mitchell shares how vision loss shaped her life. Regina worked her way back into the kitchen and is now helping others cook with confidence, no matter their vision.
In this episode we sit down with the director of Well Connected, an organization that offers free, call-in groups for adults over 60 on a wide variety of interest areas: games, music, meditation and more.
Support groups can be a great way to connect with others who "get it." Listen in as as low vision support group leaders Lynndah Lahey and Judy Davis describe how their groups are run and what their members get out of them.
World-renowned artist John Bramblitt describes how vision loss has shaped his painting and his life.
In this episode, we chat with Dr. Tim Murray of the American Society of Retina Specialists. Dr. Murray treats eye diseases such as macular degeneration and diabetic retinopathy. He answers common questions and shares his insights into the future of treatments.
In this episode, we sit down with Dr. Jullia Rosdahl, a glaucoma specialist from the Duke Eye Center, and ask her some of the many questions we’ve heard about glaucoma, its risk factors, and how to treat the disease.
Hadley learning expert Jessica Smith shares her experience raising a puppy that may eventually become a guide dog. She covers what she’s learned and things to consider if you’d like to volunteer to help out a guide dog school.
October 15 is White Cane Safety Day, a day to recognize this important tool that empowers people with visual impairment to travel safely and independently. It also brings attention to the general public to be mindful of visually impaired neighbors, giving them additional consideration and right-of-way when needed. We sat down with Kellee Sanchez, an orientation and mobility specialist, to talk about the history of White Cane Safety Day, and how a white cane can help those with vision loss.
Be My Eyes is a free smartphone app that connects visually impaired users with sighted volunteers for help with visual tasks. We sat down with Will Butler from Be My Eyes to hear how the app started, tips for using it, and exciting new features that provide specialized assistance, including with Hadley.
Tracy Simon from Eye2Eye peer support program shares her story of vision loss, how her program works, and the benefits of connecting with and supporting each other.
Ophthalmologist Dr. Lori Provencher chats with us about how the coronavirus pandemic has changed doctor's visits. She shares tips for staying safe, questions to ask, and what to expect before, during and after your next office visit.
Mindfulness expert Tiffany Guske returns to the podcast to share tips and insights on how to cope with life's challenges, such as vision loss or an illness, building resilience and focusing on self-compassion instead of judgment.
Author of "When You Can't Believe Your Eyes," Hannah Fairbairn, chats with us about how to communicate in everyday situations when you can't rely on visual cues. Hear Hannah's own story about losing vision, her practical tips on adjusting to vision loss, and advice she has on regaining confidence in social situations.
In this episode, we continue the conversation on living during the COVID-19 pandemic with a visual impairment. Listen in as we share some experiences, tips, and strategies for coping during these difficult times.
The COVID-19 crisis has brought a wave of change and uncertainty to our everyday lives. Listen in as we share personal experiences, resources and some helpful tips...all from a blind or low vision perspective.
Assistive technology experts Ricky Enger and Steve Kelley review BlindShell, a mobile phone built for those with visual impairment. They discuss the basic features, how it differs from a traditional smartphone, and how to decide if it's right for you.
This week we sit down with Dan Roberts, author of "The First Year-Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed" and founder of MDSupport website and support group. Hear Dan's own story about being diagnosed with macular degeneration and what prompted him to reach out to others facing similar circumstances.
Listen in as we explore the basics of using hand tools with a visual impairment. Gil Johnson, a visually impaired home repair expert, shares tips on everything from measuring, to leveling to hammering.
Elections are right around the corner. So we gathered a panel to talk about options for voting no matter your level of vision. Listen in as we explore everything you need to know, from registering to vote to the many ways you can cast your ballot.
Ricky sits down with Android Accessibility Product Manager Brian Kemler to discuss what is available on Android phones for those with visual impairment. From adjusting font size and color, or opting to listen with TalkBack instead, the commitment to making these powerful tools more useful to a wider audience is clear.
In this episode, we chat with Gil Johnson, an experienced home repair and woodworking enthusiast about things to consider when undertaking home repair with blindness or low vision.
Hadley's Debbie Good sits down to continue a conversation with author and visually impaired world traveler Dr. Wendy David. Together they explore a wide variety of helpful hints covering train, plane, and cruise travel as well as practical information on traveling internationally and navigating hotels.
In this episode, Ricky Enger chats with Joe Strechay, associate producer on the Apple TV+ series SEE. The show takes place in a future where, after a viral apocalypse, all humans are blind. Joe takes us behind the scenes of the show and his work to help build an inclusive set for the cast and crew, including those with low to no vision. From casting to costumes, scripting to scenery, hear how Joe helped create a science fiction world that strives to be authentic to life with vision loss.
Hadley's Debbie Good sits down with travel author Dr. Wendy David in this latest episode. In part one of this two-part interview, Debbie and Wendy discuss tips for traveling with confidence as a blind or low vision person, advice on picking destinations, considerations for traveling alone and in a group, and more!
Ricky Enger is joined by Hadley's Debbie Worman and mindfulness expert Tiffany Guske in this latest episode. Debbie and Tiffany talk about what mindfulness is and the specific benefits that mindfulness can offer for those living with vision loss. Tiffany then walks listeners through a short mindfulness exercise.
In this episode, Ricky Enger speaks with New York Times columnist Frank Bruni, who shares the story of his sudden vision loss from NAION. Bruni speaks candidly on his adjustment to the change, maintaining a realistic attitude towards his vision loss, and the failure of medical professionals to provide resources after diagnosis.
Listen in as we share practical tips on how to keep your handwriting readable. This resource-packed episode includes many useful techniques and solutions to common handwriting challenges. Hadley Learning Expert Jennifer Ottowitz chats with Sue Dalton, Certified Vision Rehabilitation Therapist.
In this episode, Hadley's Steve Kelley speaks with Kendra Farrow, from the National Research and Training Center on Blindness and Low Vision, located at Mississippi State. The episode serves as a guide for those new to vision rehabilitation, including determining who is eligible for services, key differences between the medical and social services models, and how to locate services in each state.
In this episode, Ricky Enger chats with Microsoft's Jeremy Curry, a Senior Program Manager with the Windows Accessibility team. New vision accessibility features are now available in Windows 10 for low vision and screen reader users.
In the inaugural episode of Hadley Presents, Ricky Enger and Jonathan Mosen of Aira chat about the ways in which a visual interpreter service, such as Aira, can be used to gain valuable visual information and enhance travel and leisure activities for blind and low vision users.