Reading After Vision Loss: It's Still Possible

Hadley

Reading After Vision Loss: It’s Still Possible

Presented by Ricky Enger

Ricky Enger: One of the challenges of reading with vision loss is that there’s not one right way to do it. In this episode, we hear what works for members of the Hadley community in a variety of scenarios. I’m Ricky Enger, and this is Hadley Presents.

Here at Hadley, we talk with people all the time who are in the process of adjusting to vision loss and they are in the process of figuring out what's going to work for them as their vision changes. Some people are avid readers so they’re looking for a way to read a book comfortably again, and some people miss reading the newspaper every morning. Some people are looking for ways to read a menu in a restaurant, or figure out what’s on a price tag, or to get an idea of what’s in that can that looks like every other can. So, there are plenty of reasons that people need to figure out how to read things. And that’s what this episode is all about. We’ve got people touching on various scenarios, and what has really worked for them in those scenarios.

You know the first thing people think about when they’re having trouble reading is making things larger. So first, we’ll hear from Scott and see how that has worked for him.

Scott: So here in Toledo, they've got this place called the Sight Center. What a wonderful… I mean this place was just really gracious. They had four different stations and then the second station was with an optometrist, not a specialist. She went through everything, like magnifying glasses I can carry in my pocket or any of this. And I said, well, you know, I can't read the menu now when we go out to eat. And so, she had something, something or something. She tested my eyes and then then she came up with, well, you know, “Can you read a book?” And I said “barely, you know, with these glasses.” She said, “Well, you know, let me give you some advice. I want you to go to like the Walgreens or whatever it is, and I want you to get yourself 3.60 reading glass, 8 bucks, 9 bucks.” And I said “OK.” So, what a wonderful thing that was.

Ricky Enger: Yeah, so Scott started out with a really simple solution that he could find right off the shelf at the store. And I think that’s what most people try first. So, does that approach always work? Let’s hear from Steve Kelley with some thoughts on that.

Steve Kelley: Oftentimes, when I was working as a vision rehab therapist, I would often show up, and somebody would pull out grandpa or grandma's magnifier from the 1930s or something like that. They oftentimes were not having a whole lot of success with it and just weren't sure why. Sometimes there's stuff on the TV that we see, or you walk into a box store and there are some magnifiers there. Unfortunately, a lot of times, they don't work as well as people think they're going to. The reason is because one size doesn't fit all. There’re just all kinds of different things out there. Handheld magnifiers are a great device, don't get me wrong, but you want one that fits where your vision happens to be. That's where I saw the failure in that method happening, was people just weren't really having an assessment and figuring out which one was going to be the best one.

Ricky Enger: That makes a lot of sense, Steve. Rather than continuing to try things randomly that may or may not work, an assessment from a professional can be really helpful to narrow things down. But who is that professional? It’s a low vision specialist, who is different from your optometrist or your ophthalmologist. Now let’s hear from low vision specialist, Dr. Laura Miller. We get the question all the time, well, what is the best magnifier or what is the best lamp that I can use? And it's like there's not one right answer. Right?

Dr. Laura Miller: Exactly. There is not one right answer. As part of my office, we do have a small store where people can walk in and purchase a magnifier or a lamp or things like that. We'll have a granddaughter or a son, or a daughter walk in and they will say, what's the best magnifier I can buy my mother, my grandmother for Mother's Day or whatever. And it's like, well, we need their eyeballs here with them in order to figure that out. Yes, because everyone is different and magnifiers all have different quirks to them. The larger they are, the weaker they are. So, everyone comes in and says, “I want the strongest magnifier you've got, but I want to read a whole column of newspaper with it,” and that just doesn't exist.

And so, we do really need to have that evaluation to determine the best tools that can be used and the correct strengths for someone to use. So sometimes stronger is not better for someone. 

Ricky Enger: Yeah, thanks, Dr. Miller. That is definitely one of the most common things we hear. Just give me the strongest one. That’s not always going to be successful. And sometimes, a magnifier might not even be the ideal tool for what you’re doing, but that can be a hard thing to figure out. Let’s share a bit of a conversation Steve Kelley and I had that touches on this.

Ricky Enger: Well then, how do people know? I'm sure this too is not a one size fits all. I think there's this feeling that if I just try hard enough, I can make this work and maybe I'm the problem or I'm not using it right or maybe this will just get better if I keep at it. How do people know then when it's time to investigate some other technique that might be a little more successful?

Steve Kelley: One of the things that I've observed both personally and with clients in the past is that none of us likes change. Maybe I should just speak for myself, I certainly don't like change. So those of us who have spent most of our lives reading with our vision, that's what we want to hang onto, and we are going to hang onto it tooth and nail no matter what happens.

Let me just give you a quick story. When I started a master's degree about 18 years ago, I showed up on campus, and we had done some reading beforehand and I was woefully behind in my reading and that's not really who I am. But at the time, I was doing my reading with a handheld magnifying glass because I had always read visually and highlighting and putting notes in the textbook, the printed textbook, which by the way, was just in regular print. It wasn't working. I knew it wasn't working, but I wasn't willing to do anything differently because that's the way I had always done it.

One of the students who was blind in the workshop seemed like she was all caught up and knew all of the answers and everything, so I finally said to her, "How are you doing this?" And she said, "Well, I went to the Office for Students with Disabilities and I got the text on a CD and I'm just using my computer to do the reading text to speech,” which is where the computer or whatever device you happen to be using is just reading everything that’s on the screen out loud to you. And I'm like, "Oh, the Office for Students with Disabilities."

Here's the thing. I did not see myself as somebody with a disability, but because of the frustration and also being concerned about my grades and all of that other stuff. That's where I was the very following morning at eight o'clock filling out the paperwork and getting my CD with it. Then I put it on my computer, and I started using the text-to-speech, which I had some familiarity with.

It wasn't smooth and it wasn't seamless, and I didn't get it at first. It was a bit of a struggle, but it was a heck of a lot better than what I was doing with the handheld magnifier. I just kept at it because that's what I needed to do in order to succeed in those classes. I don't think that I'm that much different than a lot of other people. I have to remind myself to be mindful about efficiency and trying things differently when things aren't working.

Ricky Enger: Yeah, so that willingness to try different things can really make such a big difference. And again, because there’s no one right tool, it helps to have several things to choose from. Let’s hear from Ruth, who is making it work with a variety of different things.

Ruth Reynolds: I decided to buy magnifying glasses and keep them on each desk or each table at home. I like to read every bit I can, and I love the ability to get large print books. Between that and my various assortments of magnifying glasses, I do lots of reading.

My grandchildren that are 11 and 13 now, have just been so sweet, “Grandma, can I read this for you?” “Please do.” And my granddaughter was reading to me, just having a wonderful time, but she couldn't pronounce a word, I said “Honey, can you spell it for me?” And after she did, I said “Oh that's how you pronounce it.” But it's just been kind of normal, it's been accepted. I've appreciated them.

I just love these support groups, the low vision groups. We meet once a month, and every second month I'm part of a book club in that group, and we focus upon reading a selected book. I'm often able to get it in large print from our local library, otherwise it’s a talking book.

One of the goals I had was just to continue as much as I could the life that I had been living and make as minimal amount of change, as necessary. I think I still approach life that way.

Ricky Enger: So, Ruth has a nice blend of magnifiers, large print options, talking books, and she’s got the grandkids involved as well. She’s not the only one who has found a way to incorporate reading into family time. Let’s hear from Judge David Tatel. As you might imagine, the ability to read was essential in his career and it was also an important part of his time with kids and grandkids.

David Tatel: For years I had all kinds of tape recorders and CD players. I'm an avid reader, so I was reading novels and biographies and everything.

During this time, we have little children and I was reading bedtime stories to them, but we were listening to them. We would get Goodnight Moon, and I would read Goodnight Moon with the little children, and we would listen, and they would turn the pages. And as they got older we moved to bigger books. I read with all my children and now my grandchildren for years with Audible books or recorded books. But then the most important transition was when they all went digital.

I have a Victor Reader. All my books and newspapers are downloaded directly to my Victor Reader. I have an iPhone, which is the most marvelous device ever. I get my books from the Library of Congress, from Audible.com, and from Learning Ally. I get my newspapers from Newsline, and I use my iPhone to read Politico and all those kinds of things and to do emails.

Ricky Enger: Yeah, so a lot of tools in the toolbox for Judge Tatel. Some of those, like an iPhone, might be familiar to you already. And some, like Learning Ally and NFB Newsline, might be pretty new. We have an entire episode on NFB Newsline, but let’s get a sneak peak of that if you’re curious to know what it is.

Steve Kelley: When I was seeing people face-to-face, you know what I heard most of the time and we still hear it when we pick up the phone here at Hadley. I miss reading the newspaper. A lot of folks with an acquired vision loss might say I can still read the headlines or something like that but they're just not able to read the smaller print. And honestly, I think the print in newspapers has gotten smaller over the years. And so next to driving, that seems to be the big one. So, the elevator pitch is if you want to get back to reading your newspaper and magazines again? Well, NFB-Newsline is the way to do it.

Ricky Enger: What an awesome service. And this is something that you can access by dialing a phone, getting an app, or going to a website. Those are just a couple of ways you can access your local newspaper, and again we’ll have a link to that whole episode in the show notes. One option that keeps coming up in these member conversations is talking books. You may have heard of Audible, or you may know that your local library has audiobooks that you can download. But there is one other service you should know about. We’re going to hear from Tonia Bickford of the National Library Service, and she not only shares what the NLS service is but also gives some tips on how to make that transition from print to audio, because it doesn’t always feel easy or natural at first.

Ricky Enger: Could you just go through again? Let's say you can read with magnification but you're kind of struggling still, would you be able to qualify for services for NLS?

Tonia Bickford: Yes. The service is available for people who are unable to read standard print, which means if you require large print in order to read the book, then you're eligible for our services. If you require a magnifying class to read a book, then you're eligible for our services. So yes, that is something that people think and we work really hard, and thank you by the way, for having us on your program today as one more effort to get the word out to the community that it's for anyone unable to read standard print, whether they can fix that problem or not using a magnifying glass.

Ricky Enger: One question that we get a lot, it's a subject that comes up over and over again, is that reading, using audio is such an unfamiliar thing for many people. They're not accustomed to listening in order to get their information. On top of that, the technology to access some of this may be brand new as well, whether it's the app or the talking book player. People get just a little bit overwhelmed by finding this new way to read and then trying to figure out the technology too. Do you have tips for someone who is making that transition from reading in print to this other method?

Tonia Bickford: I do. Not everybody's an auditory learner, and right off the bat I do mention that they're not alone. I think it helps to set expectations about the fact that it may not be easy to transition to listening to books. But here's where we can equip people with the tools they need to have success. First of all, some people prefer a male voice. Or they prefer a female voice with the tone changed. The players allow you to do that, and so does the app and mobile.

So, there's some things we can do. Sometimes we suggest wearing headphones. I'm in an assisted living center and I have a roommate and I'm not tracking my book because there's so much activity with people walking in and out of my room and my roommate talking to me and the TV going. So, we talk about using headphones at times. And then reducing the stress about the whole process by saying, well, you know, you can reverse 15 seconds, a minute, five minutes and start again. If you've lost the pace of the book and the storyline, you can go back.

But just knowing, I think just telling people, yeah, this is natural. You're not alone. A lot of people struggle with this because they're just not auditory learners. They were visual learners, and it takes time to adjust to auditory. What my example is, when you asked for directions, when someone told you what you needed to do, did you walk away from that person thinking I have no idea what they just said to me? Or did you go back and say, we need to write this down because I'll never remember this if we don't write this down? Well, there's a tip for you that you're a visual person. It's going to take you some time to adjust to listening to the audiobook and focusing on the words that are being said and the storyline. Some people find a very happy balance between cooking and listening or between crocheting and listening or sewing and listening or whatever it is that they're doing. They are actively listening while also not necessarily shutting out the world around them, but they find a balance.

I think a lot of people are afraid to admit that audiobooks are hard for them to listen to. We have the way to exclude accents. So, if someone says, well, I loved that mystery series, but I had a really hard time understanding the narrator. Well, we can work to make sure that the narrators that narrate the books they want to read do not have an accent. If they say to us that they were really upset by something they heard in a book, well then we can switch and only provide them with rated books. The National Library Service has unrated and rated books. It's just what's happening, but a lot of commercial publishers are providing audiobooks that are not rated. And so, we don't really know what's in them. Sometimes you can guess what's in them based on the author who's written the book, but if someone is really sensitive to what they hear in the books, then we can just limit the list of books that we send them to rated books. We can then exclude books with strong language or strong violence in that kind of content so that they know when they receive the books that it's something they want to listen to.

Another strategy to help with folks who are new to listening to books is not to send them War and Peace by Leo Tolstoy, but to send them something shorter, like perhaps a series of short stories. And then some people when they don't know what to read, sometimes we talk about what they liked to read when they were young. And a lot of times people say, yeah, I would really love to reread Island of the Blue Dolphins or The Red Pony by John Steinbeck, you name it. Sometimes we just start with something they know and that really helps them sort of adjust because they have a timeline and they have a visual in their mind for that story already. So that's a really good way to acclimate someone to audiobooks.

Ricky Enger: Thanks a lot, Tonia. Some really good suggestions there. And if you’re listening and you haven’t signed up for the NLS service, just give us a call here at Hadley and we can help you out with that. Now, we could not have an episode on reading without talking about braille. And I think this is the point where a lot of people get a bit intimidated, because they’re thinking about braille as a replacement for every bit of print reading they used to do. But there are ways to use braille in daily life that don’t involve reading a whole novel. Let’s hear from Mark on why he decided to learn braille.

Mark Andrews: I have low vision and braille is extremely helpful for me in a practical sense. I go to various places, and frequently I can't read the signs. But there is braille there, like in an elevator. The numbers don't always go left to right. Sometimes they go vertically.

So, if I can feel it, it's helpful. Doctors' offices have placards outside with the name, but again, sometimes it's not really without shoving my face into the wall. I can't really be sure of where I'm going, and braille would be a big help for that.

Learning takes time and especially something like this where it's multisensory, but I found it to be wonderful.

Ricky Enger: I really love that enthusiasm from Mark. It sounds like he has had a lot of fun learning braille, and he has figured out some great ways to use it in everyday life. And that’s what it’s all about.

I know if you’re listening to this, your head might be spinning as you’re trying to figure out exactly where you are in this process and what steps you might take next. We do have a workshop series called, “Reading with Vision Loss,” that introduces and goes through the options we’ve talked about here, so that’s one thing you can check out. You can also just call us at 800-323-4238 and we can help you kind of talk through things as well and figure out where to go next. I’d like to end this episode with one last member conversation. Let’s hear from Debbie because Debbie has such a relatable story of moving from one tool to another and finding how those things really work for her.

Debbie Gabe: I've always been a reader. I love reading novels and at the time I had an hour and a half bus ride to get to work in the morning. So, I'd always take a book to read. Well after a while I couldn't read regular-size print, so I would get large print books from the library. And then that wasn't big enough for me, so I would get these magnified reading glasses and then eventually that wasn't big enough for me. So, I would get a handheld magnifier with reading glasses with a large print book, and I would read on the bus, moving my wrist back and forth with the magnifier. I gave myself carpal tunnel syndrome.

I wasn't totally blind, I mean, for all practical purposes I was, so I signed up for Hadley. But I could still see. I thought, "I don't need braille, I don't need screen readers." But anyway, their class taught me that with braille, I didn't need to learn braille to read books, I could just put on a few little braille letters on my spices and then I would know what my spices were because unless it was cinnamon or pepper, I had to ask somebody in my family, "What is this? What is that?" I was the one who did all the cooking, so that was kind of inconvenient for everybody. So that Hadley class taught me it might be useful to learn braille.

I discovered that I love braille. And I discovered that reading braille books, as well as listening to audio books is a whole heck of a lot easier than trying to see books and using three levels of magnification and all of that. Braille can be useful, even if you're not totally blind. 

Ricky Enger: Thank you so much, Debbie. Again, really relatable. I want to thank all of you, all of the people who have had conversations with us and have been willing to share their stories. If you’re trying to figure out what’s going to work best for you, or if you want to learn more about any of the tools mentioned here, give us a call and we’ll be really happy to help. Thanks so much for listening.

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 P-O-D-C-A-S-T at HadleyHelps.org or leave us a message at 847-784-2870. Thanks for listening.