Transcripts of Living Blindfully are made possible by Pneuma Solutions, a global leader in accessible cloud technologies. On the web at http://PneumaSolutions.com.
Speaker 1: From Wellington, New Zealand to the world, it’s the Living Blindfully podcast, living your best life with blindness or low vision. Here’s your host, Jonathan Mosen.
Jonathan Mosen: Hello. On the show this week, an update on Apple Podcast Connectgate, the unique needs of blind hearing aid wearers. Yet another troubling Uber story, seeking your white cane recommendations and author of the new book The Country of the Blind, Andrew Leland. Welcome to Episode 240 and we’re back in Maryland for the area code of the United States that corresponds with 240. It is in the Western Maryland area and includes Silver Spring where I have had a very pleasant dinner or two, as well as other places as well. Welcome to you if you’re listening from Area code 240. Enjoy your moment in the spotlight. The country code 240 belongs to Equatorial Guinea and we can be right up to date with the population of Equatorial Guinea because in Africa it seems like they’ve been doing censuses in 2023.
There’s about 1.7 million people in Equatorial Guinea. If one of them is you, that is absolutely epic. We’re delighted to have you listening to Living Blindfully from Equatorial Guinea. We do have listeners in 113 countries. In fact, I can check the logs. Don’t worry, I don’t know who you are or anything like that but we can check the logs based on IP address and see where people are listening from. Perhaps I should look up and see if we’ve got anybody from Equatorial Guinea.
Time for the latest update on Apple Podcast Connectgate. This is a continuing series. Previously, on Apple Podcasts Connectgate, you will remember that Apple was attempting to kick the can over to Microsoft and screen reader vendors for the fact that they have designed a webpage where the date picker is not accessible.
I pushed back and I got the following response from Apple, “Thank you for following up and providing excellent detailed feedback about your experiences. We’ve escalated the concern with the date pickers on the Podcast Connect website with the appropriate engineering team. On the topic of your Windows concern, we appreciate you going the extra step of testing across multiple browsers, including Firefox. The additional details provided helped illuminate where the break occurred in your workflow. Our engineering teams are set to investigate this matter further.” Hurray, let’s give them a round of applause for that one actually. [applause]
You see, there are two points I want to make about their response. The first is that if I had not known enough to push back, and I may not have been a user who was very tech savvy and took Apple at their word, and then went off to Microsoft or my screen reader vendor and bothered them with this, it would just be delay. The screen reader vendor and Microsoft would hopefully say “What? What the soup?” I’m sorry about the strong language but, “What the soup is Apple doing sending you to us? Go back to Apple,” they would say. In this case, rightly so. Now we’re back on track. This was good but what we don’t know is how long this is going to take. It does not take long to fix a date picker on a website, guys. It should be done very, very quickly and I’m going to keep people updated.
If I don’t hear anything further, you can be sure that I will be persistent, because that’s the only way you get stuff done. Christopher Wright says, “Hello Jonathan. I’m disappointed but not surprised you’re getting this horrible treatment from Apple. Just like Mac OS, this sounds like another problem arising from a lack of prioritization. I’m afraid it will take a drastic change in senior leadership to turn things around, which was the case at Microsoft if the things I’ve heard are true. I’m also a bit surprised anyone would want to work for Apple in the first place, particularly when you consider their insane culture. Someone on AppleVis claiming to be from Apple Accessibility said employees weren’t allowed to look at the website while working.”
“I assume this also includes commenting since no one from Apple ever goes on there except to spout their ridiculous ‘We’re doing great, and there’s absolutely nothing wrong,’ PR. If this is true, this seems counterproductive. A big reason AppleVis exists is to document issues with Apple software and to willingly not participate in that process boggles the mind. Maybe it’s unwilling, but in that case, who in his or her right mind would want to work under that kind of tyrannical rule? Definitely not me. It’s all about the ROI, my friends. That’s Return On Investment, and average consumers are either unaware and or don’t care. ‘Oh look, it’s another color of iPhone. Oh look, it’s another color of a very expensive iPhone accessory. Oh look, it’s a feature to remind you to wash your hands,’ because common sense is dead.”
“I’m going to get the new iPhone because it showed I’m better than you and or I want to impress someone. So much wasted talent. Keep us posted on what happens. This is absolutely unacceptable behavior from the pioneer of mainstream accessibility. Remember, we vote with our wallets, which sounds great, but when you really think about it, doesn’t matter in the grand scheme of things. If every blind person stopped using Apple, Google, Microsoft, and Amazon products tomorrow, it wouldn’t matter in the slightest to these behemoths. Speaking of Microsoft, I’m disappointed narrator development appears to be stagnating after it showed so much potential, particularly since I know there are blind people like Jeff Bishop working there.”
I’ll just pause and say that is no longer the case actually. Jeff left Microsoft recently and he’s now in employment elsewhere. Of course, Matt Campbell was also at one point on the narrator team and has left as well. They have shed some pretty important talent and connections to the blind community of late. Christopher continues, “Where’s the fully accessible Hyper V with proper VM audio support? Being a mere mortal stinks, eh?” so says a clearly frustrated Christopher Wright. Thanks very much, Christopher. I hear the frustration. I acknowledge it. I do think that it is important that blind people continue to seek and be employed in critical roles relating to software development, quality control, and product management in the technology industry.
As I made a point of saying in my address to the NFB convention, it can often be a thankless task. I can tell you from my own experience of working in some of these assistive technology companies that sometimes the battles that go on internally are quite robust and people can never hear about them, not while they’re happening anyway. You may hear them after the fact some years down the track in memoirs or whatever, but you’ve got to play the game and that’s the price that you pay for being on the inside. It can be very difficult and very frustrating, particularly when feelings are running high as I believe they are at the moment, particularly with respect to the state of smartphone access. There are blind people on the inside there fighting the good fight.
I would just once again encourage us to be quite kind to those people because we just don’t know what they’re dealing with. I do have an inkling of what they’re dealing with and that’s why I made a point of saying thank you and expressing appreciation to those blind people on the inside. I would never want to discourage blind people from seeking work in those companies because the more lived experience, direct experience of using this technology from a blindness perspective there is in influential positions, the better it may get. I say may because there are still resource allocation issues and that’s where I think we’ve got problems at Apple right now. There is enormous innovation and thought. I’d love to be a fly on the wall in some of the planning meetings when some of the innovative features for voiceover in particular on the iPhone have been cooked up in recent years.
There’s very significant innovation going on there. You look for example, at the screen recognition feature, which is effectively performing a form of real-time OCR on inaccessible screens. That’s an interesting paradigm and I think there’ll be a lot more of that to think about in coming years. There’s innovation happening at pace. As I also said in my address, the problem is where I think the side is being let down and I suspect there may be some engineers at Apple who actually agree with me about this. Where the side’s being let down is the features are scoped, they’re designed, they’re coded, and then they get into the product and then the stuff hits the fan. I think what’s going on is a combination of resourcing of quality control not being adequate and perhaps processes around quality control not being adequate.
One of those processes is, I’m not convinced that when we take time to report detailed issues, that the people who receive those reports understand their magnitude. They don’t seem to understand when something is significant and when it’s not, when it can afford to wait and when it can’t. I don’t have enough information to understand what process is gone through but whatever that process is, I don’t think it’s adequate and that’s where the side’s being let down in my view. The quality of the innovation and the thinking at Apple with respect to accessibility is in my view quite outstanding. It’s easy and perfectly natural and acceptable for us as consumers to simply tarnish Apple or Google or whatever with a big brush, but obviously, there are many, many little moving parts in those companies.
If we’re going to make the progress that we want, we’re going to have to make sure that we target our attention on the bits of those moving parts that are not moving as well as they ought to. I hope the engineers will continue to do what they do. I hope that there is more resourcing put into QA. In terms of the issue that really gets people upset in Google Land at the moment, the lack of Bluetooth HID support, my understanding is that the talk-back team may possibly be as frustrated as we are about that, that they’re waiting for some modification to the Android Bluetooth stack that they are not in charge of. It’s a generic modification that belongs to another team. Yet, understandably, we don’t necessarily have to know that as end users.
All we know is we got a great Braille display, we can use it with our iPhone. We can’t use it via Bluetooth with our Android devices and we want it to work and that’s all we should have to care about. I have to be a bit careful because I know a lot of people in the industry listen to this podcast. Sometimes I hear things, I have to protect confidences, I hope I have, while also trying to convey what might be going on here, but the answer is not to let up. The answer is not to let up and I won’t because I think this is too critical for our livelihoods, for being able to use the product we paid for with the same degree of confidence and fluidity that cited people are doing. It’s not too much to ask. We are worthy and it’s actually the law in many countries.
Oh, regarding the ROI comment that you made Christopher, actually to Tim Cook’s great credit, he in a very spectacular clip that went a bit viral at the time, got up and challenged a shareholder when the shareholder said to him, “What on earth are you doing, Tim? What are you doing spending all this money on accessibility features when the return on investment is so negligible?” Tim Cook got up and he actually said, he specifically said, “We don’t do everything at Apple just because of the bloody ROI.” That’s what he said. He actually said that. Tim Cook does get it and I do wonder whether he fully appreciates the poor quality assurance issues that blind people are suffering from. I don’t think that those who can make a difference may fully understand quite what we are going through.
Maybe I’m wrong, maybe I’m naive. I like to see the good in people, but that’s why it’s important that we are polite, but firm and frank about what we are experiencing. “Hi, Jonathan,” writes Henry Miller, “Trust all is well with you both and you have now settled down following your trip to the US. I have been reflecting upon the issues you have been experiencing with the Apple Podcast setup and in general, how screen reader users can illustrate and simulate to sighted developers and software manufacturers our frustrations with confronting badly designed software. From the points of view of inaccessibility and usability, perhaps a program could be developed, which would only display on the screen what is being spoken by the synthesizer, i.e. if one letter is spoken with one key press, then the letter is only displayed on the blank screen for the duration of the letter being spoken, similar for words, et cetera.”
“Once a letter/symbol or word has been spoken, the whole screen remains blank. Developers cannot complain that they do not understand the voice because the text will be displayed upon the screen only for the duration of the speech output and the screen will remain blank when no speech is spoken. This would be a clear, practical demonstration and I think this will be a very interesting experiment and I guess they would go into panic mode.” Aaron Linson says, “Hi Jonathan. As a fellow podcaster and accessibility consultant, I agree with you on all points regarding your stance with Apple. In my own opinion, if we want things to change, we as blind people have every right to make changes. Civil Rights Movements didn’t just happen. Change doesn’t happen out of the goodness of someone’s heart most times.”
“Why should we be treated as second-class citizens? If others like LGBTQ can let their voices be heard, why shouldn’t we be able to do the same? I’m currently working with my apartment complex to make sure their PDFs and websites are compliant with WCAG standards. I’m awaiting the next episode in the podcast Showdown.” We can make transcripts of Living Blindfully available thanks to the generous sponsorship of Pneuma Solutions. Pneuma Solutions among other things, are the RIM People. If you haven’t used Remote Incident Manager yet, you really want to give it a try. It is a fully accessible screen reader agnostic way to either get or provide remote assistance. It’s not only screen reader agnostic, it’s multi-platform too.
You can use it on your Windows or your Mac machine and people can assist each other regardless of the platform they’re on. These days, not a day goes by that I’m not using RIM. One of the ways I use it is to either receive or provide technical support from family members. I’m a tech support guy in our family, so I quite often get questions from family members that they want me to solve. It’s not realistic to expect them to install a specific screen reader even the demo. Before RIM came along, I found myself having to try and talk them through what they needed to do. Now I can tell them to go to GetRIM.app, that’s G-E-T-R-I-M.app. Install a simple application on their Windows pc and just by exchanging a code word, I can have a look at what’s going on.
I can either run the rater on their system or if you’re using NVDA, you don’t even have to do that. It’s an amazing tool. Do check it out. RIM from Pneuma Solutions available now for your PC or your Mac at GetRIM.app. That’s G-E-T-R-I-M.app.
There’s an article in the New York Times that was released recently from a reporter called Kashmir Hill. Kashmir writes some very interesting stuff on technology and she’s particularly interested in making sure that our data remains safe and secure and we understand where it’s going. Her piece relates to the Be My Eyes, what used to be called Virtual Volunteer and is now called Be My Ai. This is the collaboration that we featured sometime ago with ChatGPT. As I mentioned last week, it has sped up considerably since then.
Her piece deals with the fact that in recent times ChatGPT has made the call to obscure people’s faces. Kashmir talked to me about my perspective on this and I made the point that I had used it on social media when somebody had uploaded a selfie, for example, a full-length mirror selfie, and I gave it that picture, it described the person’s face to me, how they were dressed, that kind of thing. I could query things like, “What kind of shoes are they wearing?” It’d go right down and drill down. It was an amazing experience. Actually, I was reminded of this this week because I was at a conference where a number of the speakers had decided that they would do the visual description thing. I have to say, I might be changing my mind on this topic [laughs], but I might revisit that a little bit later.
Anyway, I thought to myself if I could just take a pick, the Be My Eyes feature would do a much better job actually of describing this person than the person is of describing themselves. Recently that has changed because there is some sensitivity around this and ChatGPT has made the decision that they will blur people’s faces and provide less detail. My view on this is quite clear and it has two parts. The first is I want the same access to information that a sighted person has. I don’t expect it to tell me who the person is unless they’re a really major celebrity. I believe I sent it a photo that I got from a Barack Obama social media post and it identified him and you’d expect that, but I don’t need to necessarily know that somebody who’s not a very high profile figure like that is who they are.
A sighted person can glance at that person and get an understanding of what they look like, and I want that too. Now it’s a complex issue, and if you’re interested in this subject, I’d encourage you to read the New York Times piece. I understand the way the New York Times works is that you do get a few free articles from the paywall every month. As long as you haven’t exhausted that, you may be able to find it. I’ll endeavor to remember to put a link to that in the show notes. They are concerned that it might hallucinate, and I understand that, and they say there are certain types of faces that it might not do as well at. The second thing is, I think it is important for people to understand what happens to any picture that you send to a technology like ChatGPT. How long is it retained for? Is it instantly discarded after you send it there?
There does need to be absolute transparency about that. For me, the overriding issue is I don’t want to be deprived of information that somebody can just glance at and get as long as safeguards can be put in place. This is going to be an interesting discussion going forward, and I’m sure there’ll be some response to this from the community as this chat GPT feature rolls out.
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Jonathan Mosen: Dawn Davis is writing in from Sydney and says, “Just thought I’d comment on the email you received about Signia hearing aids. It has taken me a number of years to find my ideal hearing aids. I had one pair of Signia hearing aids, but they had rechargeable batteries and I found it was touch and go, whether I had them sitting directly on the charging point, and was caught out a number of times when they suddenly went flat on me because they had not been fully charged. I managed to get another set of Signia aids that had replaceable batteries. These are a little bigger and maybe a little more noticeable, but at least I know I can count on the battery life and it’s up to me to replace the batteries. I also managed to get molds that completely suit, which also took quite a while.”
“I would say the Signia app is quite accessible, and the only thing I might criticize is that sometimes I do get a little static.” Thanks very much, Dawn. I am not a fan of rechargeable hearing aids for the reasons that you outline. I like having a set of spare batteries on me at all times. I have a little attachment on my key ring and it has two compartments for hearing aid batteries, and I always keep them full and if I go flat I just go into that attachment, swap the hearing aid batteries out. The idea of not having the hearing aid charged properly or just being super busy and running out of charge, I just do not want to deal with that. Staying with the subject of hearing aids, what? What? Mike Bullis is writing and he says, “Hi, Jonathan, I’m 70 years old this year and have finally decided to get hearing aids.”
“I’ve known for some time that I had what I thought was some minimal hearing loss. It was actually closer to moderate hearing loss, but when you lose hearing slowly over time, you just don’t know what you’re not hearing. Because I had limited funds, and against my own better judgment, I bought my aid from Costco. I knew, no really I did know that the assistance I would get from the good folks at Costco would not be the quality of the service I would get from an audiologist, but I had the money, I had and did what I could afford to do. Overall, my experience was pretty good. Like my audiologist, the people at Costco didn’t know much about what a blind person would need from a hearing aid, but they were willing to experiment.”
“What hearing aids do is try and decide what you want to hear and eliminate the things you don’t. What I wanted because I travel a great deal, was a hearing environment where I could hear everything. I wanted to hear the things that others didn’t. I wanted to hear traffic noise in particular, so we created a channel that would pretty much let everything in. The things that were hard for them to understand were that I wanted to hear echoes of my cane tip-off of walls. What frequency range is that? They didn’t know, and neither did I, but a good 20% of my travel information is obtained by listening to the echo from cane tips or my feet. I’ve never become a very good clicker, but that too would be important. The other thing is that it’s as important where a sound comes from as the sound itself.”
“Not having good triangulation with your ears means you can’t locate that person coming toward you or that bicycle or car. My particular solution to this is that I got my hair cut of the way, so it wasn’t hanging over the mics. That helped a little in my ability to triangulate sound. My experience so far is that the regular channels for sound that my hearing aid gives me mostly focus on helping me hear speech. The one we created where they pretty much eliminated as many filters as possible is the most usable one for travel. I was recently looking at the fairly new Phonak Audio Lumity series of hearing aids because they are waterproof and have somewhat better Bluetooth connectivity than my Phillips Hearlink 1940s. Unfortunately, the top-of-the-line model specifically says you can’t turn off the noise filtering. How stupid is that?”
“I’d like to hear from other blind users with hearing loss, and their experiences with hearing aids and audiologists. Buying hearing aids is expensive and before I chunk down more money I want to know that I’m approaching it with full knowledge. Thanks for your continuing contributions to the blind community and for the new branding. I think it very clearly reflects your ‘vision’ and one that can and does affect our community positively.”
Thanks so much for that Mike. You raise articulately some very important points about the unique needs of blind hearing aid wearers, and it can be hard to get audiologists to understand those unique needs. I’m really lucky to have an audiologist here in Wellington that gets it. That doesn’t mind getting into the weeds, being a bit persistent, and as I’ve said on several occasions, if you wear hearing aids, one of the most important relationships you have professionally is with your audiologist. I would recommend checking out the latest that Oticon have to offer.
I’m not up for new hearing aids for another couple of years, but when I got mine in 2019, I went for the Oticon hearing aids precisely for the reasons that you are talking about. A lot of hearing aid manufacturers like to perceive background noise as superfluous in every occasion, and with the Oticon Open Hearing standard, what they’re trying to do is go with a different approach where you accentuate what’s necessary rather than eliminate what isn’t. It’s quite a distinction and it’s trying to emulate the way the human brain hears rather than applying aggressive noise cancellation. I think for travel and other things, it works quite well. Sometimes in very noisy environments, I think I could have better options. There are trade-offs with any piece of technology, but I do find that my triangulation has improved. I’ve got quite a bit of echolocation back and it has helped.
Oticon is quite a unique brand in this regard and it might be worth seeing if you can trial it to see if it works for you. Some people have done what I’ve done and gone with Oticon and absolutely love it. I also know of people who tried it and it just hasn’t worked out for them. Hearing is such a personal thing. Not only does hearing loss vary so much, but people’s preferences vary as well. Some people really like the way a particular type of speaker sounds. Others think it’s rubbish. Well, hearing aids are the same, but if you have the ability to trial some aids before you plunk the money down, I would seriously consider seeing if you can wear Oticon for 14 days or so, and see if you get on okay with it. Others may have some up-to-date thoughts as well on hearing technology and their experiments, and the care and feeding of audiologists. You’re welcome to be in touch on this one.
Dennis: Hey Jonathan, it’s Dennis Long. There is a company called Keeper Security. That’s K-E-E-P-E-R Security. They are a password manager. They do other things, but they have a password manager. About two months ago, I reported to them that their iOS app was not accessible with voiceover and I think they had some Windows issues. I forget if it were with the extension, with the vault, where it was, but I filed a ticket with those. Now that was back in April. I didn’t hear anything so I called them today, and I politely asked for a status update. They said according to their engineers the Windows app is fine, should meet my needs. “Okay, fine. I’ll go back and look at it, see if I missed something. I’m human maybe I did. Maybe I didn’t.”
Regarding the iOS app and I quote, “We’ll get to it when we can.” That is just ridiculous and unacceptable. Today, companies should have to make their products accessible. What I urge everyone to do is to email, and maybe Jonathan you could put a letter together explaining to them the harmfulness of their stance on accessibility firstname.lastname@example.org is their email address. I urge everybody to email and contact them because they need to know that this attitude is not acceptable. “We’ll get to it when we can,” I said, “Well, do you do your own in-house development because I could understand that if that were a third-party developing? They said, “No, we do our own.” Well, if you do your own and you can’t hold engineering to a higher that’s absolutely ridiculous,” and it’s time we take a stand in these apps and these companies that offer services to other people, decide it, make accessibility a priority, and don’t use these band-aid solutions that don’t work, that claim to work these accessiBe and all these other garbage. It’s time that we take a stand and make them make their products accessible.
Jonathan Mosen: Good luck with that, Dennis. Thank you for reporting in on this. Obviously, we should have the same choices that everybody else does, however, if you are looking for a solution in the meantime, 1Password is very good. They went through a bit of a rough patch when they upgraded to 1Password 8, which was Electron based and there were some accessibility issues for a while there, but it’s in pretty good shape. Somewhat reluctantly, I upgraded to 1Password 8 when I was forced to [laugh] because the old 1Password that I was using was going to be deprecated and it’s really good now. I’m actually enjoying it on Windows and my iPhone. There are accessible offerings in this space, but that in no way detracts from what you are saying and I’ve got a little slogan now that I came up with, which is if it’s not accessible to all of us, it’s not acceptable to any of us.
I hadn’t heard of this particular offering before, but I looked it up after you mentioned it, and it does seem like a fairly major player in the space. At least they give the impression of being a reasonably sized company that’s well-resourced. You’re right, there’s no excuse for it.
Heya Simkin writes, “Hi Jonathan and everyone. First of all, you can lower and raise Siri’s volume in a couple of ways. First, you can tell Siri, ‘Lower your volume’ or ‘Speak louder.’ If you want to, you can tell Siri to turn the volume up or down by saying, ‘Turn the volume up or down.’ You can tell it how much percent you want to turn it up or down or to what percent you want to set it. You use the same phrasing to set Siri’s volume by saying, ‘Your volume.’ You can also control the volume by triggering Siri and turning the volume up or down with the buttons.”
“I suppose there are many things that I wish Siri could do, but what comes to mind is some skills that Siri seems to have lost. The most useful skill is the ability to reschedule appointments after they have ended. I used to do this with my O&M lessons because the mobility teacher would always come on different days and different times. One day, about five or six years ago, I tried to do that and it didn’t work anymore and it hasn’t worked since. Another thing that I could do is get interesting facts from a site called Wolfram|Alpha I would ask it, ‘What is the Hebrew date?’ This was before you could simply set the Hebrew date or another alternative calendar to show up next to the Gregorian date on the lock screen. Siri wouldn’t just answer the question.”
“It would also show me the Islamic date, the amount of weeks and days until New Year’s, the current phase of the moon, sunrise and sunset times for where I lived, and maybe other things. All this was taken from the Wolfram|Alpha website. I think there would be other info too. I think I could ask it to tell me interesting things from history that had happened on today’s date. Maybe I had to ask it to do that or maybe it would tell me that stuff when I asked about the Hebrew date, I’m not sure because I think the skill disappeared about six or seven years ago. Some of that info you can get by asking Siri different questions, but not all of it. I miss how interesting the info was and how easy it was to get.”
Elijah Massey is commenting on the cost of Braille displays.
He says, “I have an APH Chameleon 20 that’s no longer under warranty, and quite a few of the dots do not come up anymore. Also, the mechanism under one of the space bars is completely broken, and half the other keys do not work anymore either. I sent an email to APH asking about repair, including what the price would be, and they said I would need to pay a $99 fee for Humanware to examine the device and then they can tell me what the price of the repair will be. If I decide to go through with the repair, the $95 fee will go towards the repair, but if not, I will not get my money back. However, they didn’t give me any estimate on how much this repair might cost, and $95 is a lot of money to lose if the repair ends up being expensive.”
“Do you know how much it might cost to get these issues repaired on a chameleon? The only other time I got a Braille with a lowercase B display repaired by myself is when I sent my Orbit Reader 40 in a few weeks ago with similar issues, but far less extreme. Since it was under warranty, it only cost shipping fees and $10 for the broken key.” That’s interesting. I wonder why the broken key wasn’t covered by the warranty. He says, “I might be able to have Vocational Rehabilitation get me a new Chameleon, but I’m not sure yet since it’s been so long since I opened this case with them. I would like to find at least a ballpark estimate for the price APH might charge me.
While the Orbit Reader 40 is a very good device, the Chameleon has advantages that the Orbit Reader 40 lacks, such as being more portable, having text-to-speech, having a faster refresh rate, and I think, being more resistant to dust and other things, and therefore better for some environments.” Thanks, Elijah. Wow, it sounds like that Chameleon has got in quite a state there. I don’t know enough about the system in the US to know if Voc Rehab will repair this for you, or whether once you have a device, the cost of maintenance and repair is up to you. It would seem to me that if the device is repairable at a reasonable price, it would be far more cost-efficient for them to fund that, rather than use government money to fork out for a whole new device.
If anybody has any knowledge of the menu of pricing from Humanware for the Chameleon, then, by all means, be in touch, email@example.com. If you’ve had your Braille display repaired lately, what did that cost? Also, I’d be interested, as I’m sure would other listeners, what was the turnaround like? Good luck Elijah. When your Braille display goes on the blink like that, it is quite debilitating when we use them so much and depend on them so much.
Speaker 1: On Living Blindfully, we hear the opinions of blind people from all over the world, so why not share yours? Drop us an email. You can write it down or attach an audio recording, firstname.lastname@example.org. Email us today, email@example.com. If the phone is more your thing, phone our listener line in the United States, 86460Mozen. That’s 864-606-6736.
Jonathan Mosen: Rod Carne has written a couple of messages about Netflix, which I shall consolidate. Let’s go. “Hello, JM. Up until now, I have been piggybacking on my daughter’s Netflix subscription and I was using two profiles on her account.” What a tolerant daughter you must have Rod. “However,” he says, “With the crackdown, I could no longer have two profiles unless I subscribed myself. This is what I did. I’ve always used my LG TV as my main viewing option as I find the LG Magic Remote one of the best inventions for a blind person.” I’ve not actually seen an LG TV, let alone its magic remote, Rod. That’s intriguing to hear your endorsement of it. He says, “I do not use a dedicated button on the remote to load Netflix as I find, for no obvious reason, that loading Netflix by pressing the mic button and just saying ‘Netflix,’ loads Netflix with much better feedback from the screen and navigating with the remote is a breeze.”
“I also have the Netflix app on my iPhone, which is only an iPhone 8, and I find this useful for searching through all the content available et cetera. Also, when I want the Atmos on the main TV, I can have stereo on my phone and sync it to hear the audio description. However, now that I have a full subscription, I added my Apple TV. I find the Netflix app on the Apple TV rubbish compared to the app on my LG TV. It seems to have a limited number of languages available, and definitely no Dolby Surround 5.1 or Atmos. I do concede that maybe this is due to one or more of the settings on the Apple TV, as it is not a straightforward product for normal people. I should be most interested to hear of others’ experience with Netflix on their Apple TV.”
Rod, I must say, I’m not as much a fan of my Apple TV as I used to be. It just seems to jump around the place and do bizarre things that I don’t believe it used to do before, but I do have Netflix working with Atmos and 5.1 on my Apple TV. I remember when I was looking at TVs a few years ago, I think it was 2020 because I remember we had to get it in a special way because of all the lockdowns. There were several considerations I remember having to be aware of when making a TV purchasing choice relating to the HDMI ports so that the Apple TV would work fully in terms of Atmos and surround sound. I don’t remember all the details now. It was really quite complex to pick the right TV at the time but I can confirm it does work for me.
I don’t believe using Netflix on the Apple TV is as pleasant an experience as it used to be. Although we don’t watch as much Netflix as we used to, and sometimes I think about canceling it. We do watch quite a bit of Apple TV+. We’ve just finished Silo or I have anyway. Bonnie opted out at the end of episode five, but I really enjoyed Silo and took a whole bunch of episodes with me on the plane. Never got around to watching them. I’ve watched them just recently over a long weekend that we had here. Loved Silo. For All Mankind is one of our favorite TV shows ever. We enjoy Apple TV+. We need to watch a bit more on Netflix or something, but we will find out what others think is the best way to watch Netflix. Rod also says, “I have been listening to quite a few movies recently and Netflix certainly have a wealth of movies with Atmos.”
“I have come to the conclusion that Netflix has definitely taken audio description to another level, and the level of information we now benefit from when watching a movie is just amazing. For me, the downside of this is whilst all this information is great, it does impact on the amount of soundtrack which has to have its volume reduced in order for the audio description to be heard clearly. With practice, I have refined my system of listening to the English Dolby Atmos, sometimes listed as English Original through my AV receiver, whilst also listening to the stereo version with audio description on my phone. Of course, what would be magic is to be able to download just the Ad track and play that on my phone. There must be systems to do this like as used in cinemas to feed the headphones.”
“Also, I remember some years back, Disney had an app available in the States which could download the Ad track, and then you went to the cinema and the app would sync with the film. I noticed that a TV cable service in the States operates something similar today. Anyway, I do have to have the volume on the AV quite high to get good separation from my phone.” Yes, Rod, there is an app from Spectrum in the United States that does exactly this and it’s not available in other stores to the best of my knowledge. It’s certainly not available in the New Zealand app store, which is really disappointing. I think this is an option that’s viable and that should be available to those who want to use it, where you can just download the audio description soundtrack, sync it up and enjoy it that way.
I would be interested to know whether anybody has a preference in terms of the way that audio description is handled on these different streaming services. I think Apple TV+ is the gold standard for me. They don’t tend to drop the audio dramatically down and back up again when the audio description is talking, and yet it is really well mixed. I don’t have any trouble hearing the audio description over the soundtrack. It just seems very nicely done. Of course, they leave the original encoding intact, so if the title is in Dolby Atmos, you get audio description and you continue to get Dolby Atmos. They’ve done a lovely job on Apple TV and I think that is my favorite audio describer in terms of the way they just mix and handle it.
Steve Nutt’s writing in from the UK regarding the Qardio products. He says, “Hi Jonathan. Firstly, thanks to you and Bonnie for reminding me to take my blood pressure tonight.” Oh, it’s all part of the service, Steve. He says, “The point of this email is to say I have QardioArm and QardioBase 2, and as you know, I am an Android user. The app is just as accessible on Android as it is on iOS. I would take issue though with Bonnie saying, you don’t have to save the measurement. There is a save button and you should press it. Maybe on iOS, it saves automatically, but on Android, it doesn’t. One other thing to note is that if you go to the timeline tab, it will tell you your blood pressure after you’ve saved it and tell you that it is either high, low, normal, or optimal. I haven’t tried Withings scales, but QardioBase is very accurate according to my doctor.”
“I have QardioBase 2, but there is now QardioBase X.” I presume that’s not 10, I presume it’s X. “These are newer scales and give you even more in-depth measurements. The other device they have is QardioTemp, which is as it suggests, a body temperature thermometer. I haven’t tried that one. I am very happy though, in the Qardio sphere as it were. Keep up the good work,” says Steve. Thank you, Steve, great information.
Kelby Carlson writes, “Hi Jonathan, I love the interview on the all-terrain cane. While it doesn’t really fit my use case, it sounds like a wonderful device. I’m writing to ask what cane you use. I’ve used Ambutech for over 20 years but in the last few, they’ve declined in quality for a bit. In particular, the elastic on the inside consistently breaks around the joints which never used to happen causing me to have to replace the canes much more often.”
“I wanted to buy a cane from the NFB to at least see if they had folding canes, however, they have closed down their online store, so I can’t. The only cane I can get from them is a non-foldable one and while it’s a fine cane, I really need something that folds for when I travel in a vehicle. What suggestions, if any, do you have? Thanks very much, Kelby. I used to have an NFB telescoping cane for quite a long time and they’re cool the way the telescope like an antenna. They’ve got these sections and they all just pull out. When you collapse them, they’re very small. What I did find though, was that if I was walking at a reasonable pace and there was a crack in the footpath, what Americans called the sidewalk, sometimes the cane would catch on that crack and it would collapse in on itself, so you had to twist them pretty tight when you were expanding them.
I think I have an Ambutech cane at the moment. I don’t honestly remember. I got it from Blind Low Vision NZ and I think they are selling Ambutech canes. This is a really good subject. What brand of cane, what manufacturer of cane do people like, and why? Give Kelby some hints. firstname.lastname@example.org if you want to contribute to that discussion or any other that we’re talking about this week and the number 86460-Mosen in the US, 864-606-6736.
We’re saying hello to Amanda Lacy and she says, “Dear Jonathan, on your latest show, which was some episodes ago now, I was very surprised to hear a blind listener complain that their new hearing aids didn’t allow them to hear well in noisy environments such as across the table in a loud restaurant.”
“I don’t use hearing aids. In fact, I’m 37 and can still hear sounds that are supposed to only be audible to teenagers. However, I’ve never been able to hear well in loud places like the ones he describes. My understanding is that a sighted person having a conversation across a table in a loud restaurant will compensate for noise by looking at the other person’s lips to fill in the bits of auditory information. Noisy places stress me out since I can’t hear what’s going on. If I can hear the person right next to me, everything else is just a wall of noise and I’m stuck listening to that one person. I can’t choose who to talk to and may as well be on a Zoom call with just that one person except Zoom filters out loud sounds so at least it would be less stressful. The ever-increasing noise in the world is one of the major reasons I avoid most in-person events now.”
“I’ve heard similar stories from other blind people. I don’t know how it is in New Zealand but in the US or Texas, at least, places have gotten louder. They’re built with all hard surfaces and they play booming music at deafening volumes on purpose. This is true not just in bars but at coffee houses and regular restaurants. The last White Cane Day Celebration I attended was at the School for the Blind in Austin. Even there they blasted us with big speakers and refused to turn it down when a friend and I begged them to. Making a public place super loud is no different than building it without a ramp or refusing to serve people with guide dogs. Questions. Is sound access being addressed anywhere within the disability space? How do blind people actually hear in these environments?”
“Are you aware of any difference between the way congenitally and advantageously blind people perceive these spaces? Isn’t the expectation that hearing aids will continue to compensate in environments that are increasingly too loud for everyone similar to reliance on IRA to read an accessible text or on OKO to cross intersections without audible signals? If the intersections and the text should be made accessible to begin with, then shouldn’t the restaurant be also? It harms no one to just turn it down.” Thank you, Amanda, very thoughtful and articulate message and I appreciate that. I think we are actually talking about two different things and they’re both important. If you’re a hearing aid wearer and you’re in an environment where there is no background music, where the acoustics are fairly good, so there’s no high ceilings and sound bouncing off everywhere, but there are multiple conversations taking place with a near shot at the same time, that can be enough to cause difficulty for many hearing aid wearers, and I speak from personal experience.
We were in an environment for example at NFB where it wasn’t especially noisy, but it was just busy in the sense that they were a lot of people talking at regular volume and it can be hard for hearings aids to focus on that one conversation that you’re trying to have, and that’s very difficult. I can go to a restaurant for example, a Ruth’s Chris steak house is a case in point. They tend to be quite nice. They tend to be jolly expensive as well, but Ruth’s Chris is one of my favorite places on earth, so what you going to do? They tend to have carpet on the floors and a pretty good environment and people are just talking at really normal levels, but there’s a lot of people talking. That’s enough sometimes for me as a hearing aid wearer to lose track, but everybody else around the table in that kind of nice environment does not lose track.
There are technical challenges that still need to be overcome. There are workarounds. I for example sometimes take a remote microphone to an environment where I know it’s going to be noisy and either put it in the middle of the table or give it to the person that I’m primarily talking to for them to clip and then I can put that mic in a unidirectional mode and it focuses on that individual and that helps, because we have two choices, I guess. One is that we closter ourselves away and we just don’t get ourselves in these social situations and that’s tempting and the other is, we live life the best we can and we hope for people’s patience and tolerance. I do sometimes feel sad and a bit frustrated if I go to an environment where people are really interested in meeting me or I’m interested in meeting the person I’m talking to. Even in a fairly regular hubab kind of environment, it can be hard for me to keep up.
It’s frustrating for everybody. Bonnie’s really good. When we go for a meal together and we have other company, she sometimes translates if she thinks I’m not hearing correctly. There is definitely a problem unique to hearing aid wearers that technology needs to continue to try and work on. Now, the second problem is absolutely a real problem because we were in several situations at NFB where people around the table that I was at were finding it difficult to communicate with each other. Actually, the banquet was one. The banquet was just an absolute wall of sound for me. I could not talk to anybody in the banquet which was actually quite concerning because we were with a group of very interesting people. When I would like to strike up a conversation, I simply could not. No technology was going to help me there.
Then Bonnie was saying, “Look, we were all in the same position.” We would all start talking to the person next to us and that’s why quite a lot of people were playing musical chairs where they were changing positions at various times during the evening just so that they could have a conversation with one another. If a meeting is particularly important and I have control over it, I will do a lot of checking like, does the restaurant tend to play loud music? Is there carpet on the floor to dampen the sound? Various things of that nature. Yes, things are getting loud out there and it is a very difficult inaccessible environment and I think sometimes sighted people underestimate how much they are actually lip reading in an environment like that.
I just have to hope that there’ll be increasing awareness of this and that perhaps quiet restaurant environments with good acoustics might be actually seen as a competitive advantage for businesses to pursue. Getting a little bit tangential, not too much tangential, I ran into a sighted person at the Exhibit Hall at NFB, and I was commenting on how very noisy the Exhibit Hall is as well. He made an interesting observation. He said, “My colleague and I have been talking about this because we attend a lot of conventions. Most of them full of sighted people, and the NFB convention is definitely a lot louder than other conventions we have attended.” He hypothesized that the reason for that is that so many people are just using audio to communicate, get information, that it is just a noiser environment than average.
Now, I have no idea whether that’s true. It could be very anecdotal, but that was his observation and it certainly got me thinking. It’s a great email, Amanda. If the well-functioning human ear is not doing well in these environments, then how can we expect hearing aids to. Although, you may find eventually that with some of these algorithms that are getting so good at filtering out extraneous noise, maybe hearing aid wearers will one day have an advantage over everybody else, but it would be nice to get this one sorted and raise awareness of the harm that these noisy environments are doing. Hope we can get some more feedback on this.
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This email has the subject line, “Bonnie Mosen replaces longtime host of livingblindfully.com,” and it comes from Scott Marshall. He says, “Okay, Jonathan, my friend, embrace it. Your host chair is in jeopardy. Bonnie did a fantastic job with the Seeing Eye interview. She asked all of the right questions and I learned a lot as a former grad of the Seeing Eye. As with so many other issues, especially in the civil rights arena, the road to successful enforcement is not self-actuating, even though we all wish that it was.”
“The takeaway is that we have to be educated consumers prepared in advance to take appropriate action when needed. Here in the US many years ago, we had a ubiquitous clothier whose founders, Si, and Marcy Sims advertised their automatic markdown price tag system. The idea was that the customer would always know upfront when the deepest discount would go into effect. The hashtag on all of their commercials long before hashtags were a thing was @Sims, an educated consumer is our best customer. Many thanks to you, Bonnie, and your listeners who helped to keep us all educated.” Thank you very much, Scott. Now Bonnie does a great job with these things and she is of course a trained journalist. She’s a qualified graduated journalist, so I hope we can hear more from Bonnie doing interviews on subjects she’d like to cover.
We’ve got her all set up with her own little mini studio and clean feed and she is a legend, so it will be good to hear more Bonnie interviews in future.
An email now from Randy Reed who says, “Hello Jonathan, I wanted to share an experience I had with Uber that I find troubling. On June the 22nd, I took an Uber to my office. The driver said we’d arrived and I got out of the car only to find we were at a house and not my office. I got back in the car and told the driver we were at the wrong address, so we needed to go to 1506 Bay Moore Gardens Parkway. The driver said we were at that address and I told him, ‘I know what my office looks like, this isn’t it, and please take me to my correct destination.’ He got out of the car and disappeared for a while. While he was gone, I got a notification on my phone from Uber. They noticed that my ride had been stopped for a long time and wanted to make sure I was okay.”
“I was feeling a bit apprehensive but wasn’t sure this was a 911 situation, so I cleared it. A few minutes later I got an automated phone call from Uber with the same message. I cleared it. Eventually, the driver found someone who works in my building and she guided me to my office, which was just across the street. I contacted Uber Support and let them know what happened. They responded by telling me that sometimes you walk to your destination from the Uber and gave me $5 in Uber cash. I didn’t agree, but since I Ubered to my office before with no problem, I decided to let it go and do my day job. On June the 26th, I took the same trip and wound up in the same situation. This time, the driver became argumentative with me and wouldn’t take me unless I ended the correct address. I told him I had to put in the correct address, and we weren’t there. We went on like that for a few minutes. I eventually got him to take me to my building, as he continued to lecture me about putting in the right address. I decided I wasn’t letting this one go, so I contacted support under the category of driver refused my destination, which is technically what happened.
I again received $5 in Uber cash and an apology. I responded that sorry wouldn’t cut it, and explained that I wanted to go to 1506 Bay More Gardens Parkway, and the Uber kept trying to drop me off at 1506 Roslyn Avenue. I also let them know that I found the driver’s attitude offensive since he was willing to believe the address on the house door and the GPS, but not the blind rider who works in this office often.
I then received a response telling me to use the map pin and drag it to where I wanted to be dropped off, and the system would get the hang of it after a few times. I responded that I’m blind, a VoiceOver user, and using the map wouldn’t work for me. I then received the same response three times, and I gave the same response three times, being more and more firm as I went. They then suggested the map thing one more time. I responded that they weren’t getting it.
I explained again that I couldn’t use the map. I also told them I found the driver’s responses and the responses of the support team to be insulting to my intelligence. This was especially true of the last use the map suggestion, that suggested that I have the person with me drag the map pin. I also let them know that at least since the 1990s, Americans with disabilities had the right to access independent travel, and that it was unreasonable for anyone to assume I would be traveling with an aide.
I also let them know that if I was a woman, and contacted support to say a driver was putting me in an unsafe situation, and/or that he was arguing with me over where my destination was, the situation would have been promptly dealt with, and the dismissal of my situation by the support staff would also have been viewed as unacceptable. I then received a response from a support manager saying she understood my concerns, and she was sorry she couldn’t fix the map, and that she would let the app developers know.
I responded that this wasn’t about the map anymore, but the attitude of the driver and support staff. I wasn’t being listened to, I was dismissed, and I was disrespected. I then received $15 in Uber cash and notice that that driver would never be assigned to me again. To my mind, this still doesn’t fix the issue. The experience has made me feel that if I’m in an Uber, and I say something is wrong, I may not be taken seriously.
What if it were a medical emergency, and the driver wouldn’t listen because they couldn’t see it? Also, I paid for Uber One, and I’m supposed to be getting the better support experience. I let them know, I’d had better support experiences talking to Comcast Cable, meaning Uber support is lacking in quality. I since closed the ticket because I don’t feel like I’m getting anywhere going through the appropriate channels.
I just want blind people to know of this additional safety issue involved with taking an Uber on top of the ones that already exist, thank you and keep up the good work. Yes, thanks, Randy. The Uber support is just atrocious, and sometimes I wonder am I talking to an algorithm. What is real anymore, man? Is this AI, or am I talking to a human? Where’s that human coming from? Is there a language barrier? Is there a cultural barrier, where they just think blind people aren’t worth bothering with? It is a huge issue.
It’s got worse again because they used to be, at least in New Zealand, a program called Uber Rewards, which Uber has now deleted. If you got on to, I think it was called the Diamond Tier of Uber Rewards, which I was, you would be able to call a phone number and actually talk to somebody, and a lot of the issues could get resolved quite promptly that way. That’s gone now, and you have to deal with the app, which can be problematic to access at times once you get into a support issue, but also just incredibly frustrating.
They think that throwing money at the problem is going to make it go away, or thanks for your feedback, here’s $5, or if you keep going as you did, here’s $15, but it doesn’t deal with the systemic issues that are being raised. Fight the good fight. You may have heard the representative from Uber talking at NFB, and there was a lot of backlash about that speech because what she was saying just seemed so at odds with the experiences many of us continue to have around the world.
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Jonathan: The loss of one’s sight is a significant life-changing and, at least, initially, traumatic event. Sight loss can happen suddenly or, as was the case for our guest today, gradually and almost insidiously. Andrew Leland was diagnosed with retinitis pigmentosa over 20 years ago. In recent years, he’s had to come to terms with the progression of his sight loss. He’s chronicled that journey in a new book. It’s called The Country of the Blind, which is out now. It’s published by Penguin Press. Andrew, I’ve been looking forward to this. It’s great to talk to you. Welcome to Living Blindfully.
Andrew Leland: I’m so happy to be here, Jonathan. Thanks for having me.
Jonathan: Okay, first of all, full disclosure, I loved this book. I hope everybody reads this book. I was enthralled by it, and I actually read it twice. Why did you write it? Why did you decide to do it?
Andrew: As you mentioned, I have known that I’ve had RP for many, many years, and it has affected my life over those years in what I felt were largely small ways. I had severe night blindness, so anytime I would go to a bar or somebody suggested walking through the woods at night on a moonlight hike or something like that, I would have trouble, but for the most part, doing my job, I was working as an editor at a literary magazine, walking around, blindness didn’t feel at all relevant to my life.
Even though I was interested in it, I felt some obligation to prepare for it. It just felt abstract to me, really. In the last 10 years, and then really in the last 5 years, that period ended, and I needed to use a white cane, I needed to start to figure out how to read, using assistive technology. That experience opened up a lot of new questions for me and quite urgent questions, and not only practical questions, but I started to feel a larger intellectual and creative curiosity about blindness.
That was one of those experiences that I hope everyone has, where it’s just like you start tugging on a thread, and then you just think, oh, wow, this is much larger than I ever could have realized. Along that path of just saying, “Oh, this is going in so many directions, and I’m so curious,” I thought, “This is why people write books, is when there’s intractable, interesting, difficult, fascinating problems that that one needs to pursue at length.” That led to the genesis of the book.
Jonathan: People talk about the benefits of journaling. In a way, was this your journal? Were you conscious of a therapeutic aspect for yourself when you wrote this?
Andrew: Absolutely. One thing I’ll say about writing a book is that I had years of journal entries that I had kept. It’s a different process than really composing an extended, more rigorous investigation like the one that I produced, which is not to say that there weren’t therapeutic aspects to it, but it had to become more than that for me to finish the book. I would read through these journal entries and look for patterns and look for I don’t know if it’s silly to call them structures of feeling, but look for the ways of understanding what I was going through.
The journal entries were really crucial for that. Then I had to do the next step of processing them and refining them and adding in more historical or more critical elements to it. Thinking about who else has experienced this, and how is my experience general, or how is it contingent on my own situation? It was journaling and therapeutic, but then there was this whole other apparatus that got kind of hooked on top of it.
Jonathan: Yes, I found meditation and mindfulness to be life-changing in my own life. When I read this book, I thought you’re almost able to step back from your situation and look at it from above and say, “What is happening to me here? What does all this mean?” That is quite a skill to be able to do that.
Andrew: I share your appreciation for meditation, and there’s a bit towards the end of the book where I make that connection explicit between the living blindfully, if you will, living with blindness in a way that feels productive and interesting and the practice of mindfulness. For me, it really has to do with slowing down and not letting the emotions of the situation where I’m frustrated, where doing something visually now it’s so much more difficult doing it non-visually.
I think meditation has been really powerful for me in that way. Even more broadly, I think your point is well taken that I think writing has an element of mindfulness to it where there’s something– Our day-to-day life can feel, and this is true far beyond the experience of blindness, things can feel messy and confusing, and they pass by quickly, or they pass by way too slowly.
I think the process of writing does give one that distance where one can look a little dispassionately even at a situation and say, “Well, where do these things come from, and who else has been dealing with this? What is it actually like? What am I feeling right now?” Which can be surprisingly difficult to do when you’re in the thick of it.
Jonathan: It doesn’t surprise me at all to learn that you’re into meditation because I think that really explains a lot about the way this book is written. Who do you hope is going to read it? What’s your audience?
Andrew: Well, It’s interesting because my publisher was very clear about this book being for everyone. I think they wanted the book to be read by blind people, but I think just practically from a business standpoint, they didn’t want it to only be read by blind people. They wanted it to be read by anybody walking into a bookstore or into a library who might be interested. That was a real challenge of the book, I think, to hold both audiences in mind.
I was thinking about it, talking to you today because most of the other conversations I’ve had about the book I’m able to say, “Well, let me explain how a Braille cell looks. There are six dots,” and, of course, you could run circles around me with more or less I would say any blindness-related subject. It’s a little intimidating talking to you in that way, but I think even before I started writing about blindness, I was a magazine editor and I always had this.
I think a mentor of mine told me this about the sort of tone that we were looking for in the magazine stories we were editing. This was for The Believer magazine. The analogy they gave me was, imagine you are sitting at a dinner party, and you want to talk about, let’s say, climate change. To your left, sitting at the table is a bright seventh grader, let’s say a 13-year-old or something, and to your right is one of the premier climate change scientists in the world.
How do you talk about climate change in a way that keeps them both engaged? Clearly, you’re not going to teach anything new to that climate scientist, but there is a way, I think, to talk about any subject down that middle line where you’re framing things that the climate scientist already knows in a way that they’ll appreciate and that they’ll connect to ideas that they’re excited about, but you’re not leaving that bright seventh grader behind.
I think that was the approach I took with blindness. I knew that you, and I didn’t know you personally, but I knew that people of your degree of immersion in these histories and these technologies and these stories about blindness would be reading the book. I was trying to write it in a way that would be interesting and still appealing, but then at the same time, for somebody who doesn’t know what a screen reader is, somebody whose only experience of blindness is a couple of terrible representations in TV.
Jonathan: I think this is a very important read because while it doesn’t sugarcoat a very difficult experience, it does send a strong message that a full life as a blind person is possible. You got me thinking a lot about what influences our response to extreme adversity in our lives. You mentioned in the book connecting with a Facebook group, for example, of people going through a similar sight loss journey to you, but you found it a bit negative, unduly focusing on cures that don’t yet exist and may never come.
What is it about you that has allowed you to respond in the pragmatic way you have when so many others do not?
Andrew: I think, to be fair, one thing is that I live a life of privilege. I was talking about this with a deaf-blind friend of mine who talked about how much of a privilege it is to be able to take a kind of intellectual approach to one’s life. If you don’t have the education or even the leisure time that writing this book required, it wasn’t leisure, I was working incredibly hard, but I was able financially to take a lot of time to really do the research and the writing.
I think that is crucial. If I was struggling to work 12 hours a day in a workshop or a sheltered workshop or anywhere else, I think it would’ve been much more difficult to find the kind of purchase or the kind of leverage, the mental leverage to find my way into a lot of these ideas. I think privilege is part of it, economic privilege, as well as others. I think the other part of it is, yes, being exposed to these ideas about mindfulness.
I think it’s, yes, just a philosophical orientation that I’ve had for most of my life where I think maybe part of it is maybe being exposed to ideas about meditation, but the other part of it, I think, is literary. I think if you’re passionate about art, there’s an innate sense that the best art comes from not necessarily adversity, but tension. Nobody wants to read a story where the character wakes up in the morning feeling good, and then has a nice lunch, and then goes to bed feeling great.
That’s the most boring story ever written. I think as I started to feel really big feelings and deep questions and confusions about how I was going to live as a blind person, some back part of my brain that had been an art consumer, an art lover, a book reader, a film lover my whole life thought, “This is juicy stuff. You should pay attention to this.” I think that’s part of it too.
Jonathan: I suppose that happy ending, for want of a better term, that coming to terms with life as it now is, is not a place that everybody reaches.
Andrew: Yes. To be fair, I haven’t reached it either. That’s the tricky thing about this book for me, putting it out in the world now, because I still do have some usable vision, and I feel very wary of presenting myself as like, “Well, I’ve figured it out, folks. I went blind, and it was just fine for me,” because I’m still going blind. I quote a friend of mine in the book as saying, “Andrew, you might be going blind for a really long time, and you might be less blind now and more blind then, but at a certain point, you’re just going to have to say you’re blind.”
That’s a really tricky thing to manage, and especially as I talk to lots and lots of blind people, many of whom have less usable vision than I do, many of whom have more, and so I get caught up on that idea of like, “Well, even though I’ve made peace with so much of it, there’s still in the back of my head this thought like, “Well, but then you’re going to continue to lose vision, and how will you deal with it then?” I feel confident about that, but there’s still a little bit of wiggle room there where I can’t tell you that I’ve got it all dialed in yet.
Jonathan: That blind word has such strong connotations, such strong negative connotations for so many people. I was delighted to see the attention you paid in the book to all the ableist language around blindness, the pejorative use of blindness, and the harm that that is doing. Using the B word, the blind word is a big step for a lot of people.
Andrew: It really is. I finished the book probably almost a year ago now, and it’s still an ongoing process where I was doing another interview around the book and one of the interviewers said to me, we were meeting on Zoom, and she said, “Well, I actually saw you looking around the screen, so you call yourself blind, but what does that mean if you’re looking at the screen?” Even though I’ve thought about this so much, in that moment, it still pulled the rug out of from under me. I felt suddenly defensive, and like I was a faker. That’s just something that is so difficult.
It has to do with this idea of blindness as a binary. Will I only be able to call myself blind when I have no light perception at all, or no usable vision, or what even is usable vision? Because people can use even light perception for things. It’s an ongoing process, I’m realizing. It’s not just going to be something that I figure out, and I’m done. Because as my friend said, I think I am going to continue to lose vision very slowly for many years.
I think the NFB does a good job in their definition of blindness, the way they define it. I use a white cane every day where I go, I use a screen reader every day to do my work. I’m also using magnification tools. I’m reading Braille. If I’m not blind doing those things, then what am I? I feel blind. I know that I’m blind, but that’s all to say that I still have these persistent feelings of self-doubt around it.
Jonathan: I found that very informative when you were recounting several examples of this accusation of being a fraud that you’ve encountered, for example, when you’re coming to terms with using a cane, which was a big step for you, and as it turned out, a big step for your wife to accept that there were situations where you would need to use a cane in public. Then just as you try and come to terms with doing that, somebody comes along, sees that you’ve got some usable vision, and essentially says you’re a fake, you can see.
Andrew: Yes, I’m sure everyone has had experiences like this, whether it’s about blindness or something else, where you build up a story in your own head, and then some not-so-nice person out in the world just pokes a perfectly placed pin right in that balloon, and it just deflates. Then all you can really do is just go back home and nurse your wounds and start over.
It really, to me, that journey of figuring out who I was in terms of this disability, that felt as important of a journey to me as learning how to use a screen reader, that sense of myself and that confidence because I just found myself walking around with every single person I encountered feeling like an adversary and just questioning myself. That’s as disabling as any other aspect of a disability, that feeling of a loss of confidence.
I really had to push through it. Writing the book really helped, I think, because not only did I have this sense of the reality of what I was going through and the definitional stuff that I just talked about, but I felt like I understood it in a really deep way that if somebody really wanted to have a debate about it, I could explain to them exactly why I deserved to call myself blind. Not only deserve but how important it was.
For me, the bottom line that motivates me to accept it, even in the face of that self-doubt, is the sense that what’s the alternative then to say, like, “Oh, I’m not blind”? Then, well, what am I even doing with a white cane? Then I’m kicking a dog and falling into a manhole. You know what? If I’m not blind, then I probably don’t even need the screen reader, I can use magnification, and meanwhile, my emails have a thousand typos in them, and it takes me twice as long to read something or write something, and I can’t work anymore.
That’s not a good trade-off. To me, it makes sense to pursue that identity, but it takes a lot of work and a lot of talking to oneself, I think.
Jonathan: It does strike me you have a certain resilience of character, which not everybody possesses. The book recounts some medical professionals who were seeking to dampen down, I think, your expectations of what life as a blind person might be like. You were told, for example, that as your vision deteriorated, your mobility would almost certainly deteriorate with it. That’s a pretty disturbing message, I guess, for people to hear when they’re vulnerable.
It resonated with me because as a former chair of our blindness agency in New Zealand, and talking to other chairs of blindness agencies around the world, one of the perennial problems is the handover when an eye professional concludes there’s actually nothing to be done, and when that person needs to end up in the blindness system. Sometimes it doesn’t happen at all, and sometimes it happens in an incredibly negative, damaging way.
Andrew: Yes, I think I’ve been lucky in that way. Even though I have had those experiences that you’ve mentioned, just because as I’ve done research and talked to many, many blind people, there are absolute horror stories out there of just the absolute lack of bedside manner that a lot of doctors will have. Not only bedside manner, but as you suggest, a lack of information about the reality of blindness, and the possibilities within it of mobility and eligibility to work and so on. I think, really writing this book, in a way, was a corrective to that.
There wasn’t a book that I felt like I could pick up and say, “Oh, okay, this is how I can be a writer, and this is how I’ll be able to continue to travel the world.” Certainly, those books are out there, but I didn’t have the one that I would have wanted to read necessarily in one place. In some ways, this book is the book that I would like to hand to myself 20 years ago to say, “Okay, you have RP, but look at this country of the blind, look at this world of blindness that is full of interesting, exciting, wonderful, and normal things that are going to make your life just fine.”
Jonathan: When I was a blind kid, and I’ve been born blind without any light perception, so there’s no ambiguity there. We had the totals and the partials. That’s what we used to call them. Yes, totally blind kids and partially sighted kids. When I talked to some of those kids as an adult, they reflected on the fact that they weren’t really sure which world they belonged in.
In the book, you recount what for you was a very unsettling experience on the sidelines of your first NFB chapter meeting. That’s the National Federation of the Blind in the United States. You talk about feeling like a tourist as you started to investigate the country of the blind. Can people like me, those of us who are congenitally blind, or who have been blind for a very long time and are living a full contented life just totally comfortable, even seeing blindness as a matter of pride, do anything that would better bridge the gap for those who are confronting a future as a blind person with quite understandable fear?
Andrew: That’s a terrific question. What can you do? I don’t know that you have any responsibility. I think that there’s a sense in which the burden falls on the person trying to understand blindness from the outside, as it were, less the people who are already comfortable there. For me, the most powerful bridge is just that feeling of finding role models. I think you’re doing it.
I think presenting your show, which I listen to, and I’ve just found so much valuable debate and conversation and resources. I think just presenting a model of a life, that is the life that you’re describing, is enough. For me, that was one of the most powerful things I got from writing the book was just meeting all these people, like Rick Boggs at Audio Eyes, who owns his own recording studio, doing audio description in LA, or Chancey Fleet at the New York Public Library, running the Dimensions lab, where she showed me how she has 3D printers that blind people can use independently. People like that I look at, and I think, “Okay, I want to be you when I grow up.” That’s the bridge that I need.
Jonathan: Your proactive approach of trying to acquire the blindness skills you needed before you fully needed them seemed to be quite unusual because it seemed like you got a little bit of pushback from the rehab agency when you sought to engage them at an early stage. That was interesting to me, that basically, you almost were told by the agency, “You’re not blind enough to be playing with the skills that you’re looking at.”
Andrew: Yes. Without blind mentors, and without immersing myself in this world of blindness that I had to find well outside of the state agencies for the blind, that’s what empowered me. I had the state agency say, “You’ll use a screen reader. You don’t need Braille. That’s a little ambitious, Andrew.” Then I went to my first NFB convention, and I met a woman named Barbara Lowes, who was at the Braille book fair there. I said to her, “Oh, my sighted Braille teacher back home is teaching me just to read with one finger. Is that good?”
She looked horrified. She said, “One finger, you’ll never finish a book that way.” Then she showed me, and then that empowered me to say, “Maybe this sighted guy teaching me how to read Braille is a bit like somebody who’s only watched videos of people riding bicycles on the internet, teaching someone how to ride a bike.” You want somebody who knows how to ride a bike and who rides regularly to teach you how. That makes sense for Braille too.
Then I found the Hadley Institute, a correspondence course, and that was wonderful. Now I’m reading proudly with two hands. I think it’s the people that I sought out myself far more than the people who the government or the medical establishment provided me with who have led me towards finding those skills in a significant way.
Jonathan: In essence, that’s the message the National Federation of the Blind has been sending since its founding in 1940, isn’t it? That to enter the country of the blind, the best way to do that is to find blind mentors and to be guided by other blind people.
Andrew: Absolutely. There’s a little bit of a, if not a paradox, I think the other side of that coin, and I had several high-ranking NFB folks who I talked to admit this to me, which was that traditionally the NFB because of that really firm stance on like, “We are the blind experts, talk to us as the people who know blindness inside and out,” it’s not as good for people who are in my position where they’re in the emotional throes of the beginning of vision loss.
If you just lose your sight, and you really want to talk about how terrible it is, going to an NFB convention might be a tough experience because you’re going to have a lot of people who are saying, “Dust yourself off and get out there.” I think that was one of the tensions I encountered where I really love that approach. Also, I talked to plenty of people who were turned off by it because of the resistance to thinking about it as an emotional, sad thing.
Jonathan: It’s not a solution that suits everybody?
Andrew: Yes, or at least not everyone at every point in their journey.
Jonathan: You draw a comparison with the sense of identity that you feel by virtue of being Jewish, and you draw some comparisons with what I’d paraphrase as a cultural identity connected with being blind. That’s a topic that we’ve discussed here on this podcast, whether there is, in fact, a blind culture. It doesn’t seem disputed that there’s a deaf culture, but there is some debate about whether there is one in the blind community. Have you concluded that a blind culture exists?
Andrew: Yes, that’s a fascinating question. I think the comparison with deaf culture is interesting because of sign language, whether it’s ASL or any of the other national sign languages. Language creates community so powerfully. I think there’s nothing more powerful in terms of the creation of a community than a language. The people you speak to and the way you speak to them, that really constructs a community.
I think the signing community, they need a Gallaudet University, a deaf university because otherwise, I think a university would just not be as rich of a place to build that deaf community. I think for blindness, there’s this sense that because communication isn’t the barrier, it’s more access to information. I guess to oversimplify the difference between the challenge a deaf person faces in a hearing world versus the challenge that a blind person faces in a sighted world, communication isn’t as big of a barrier.
I think that makes the community feel more diffuse because you can feel blind and a part of whatever your other identity is in an easier way because of the lack of a communication barrier. That said, I think there are commonalities to the blind experience, but because they’re not linguistic in nature, and they’re more about access to information, I think one way I’ve started to look at it is that the blind community, it’s almost like a user group.
I remember when I was a kid, my dad has always been a techie and involved in desktop publishing and computers since I was little in the ’80s. He introduced me to these user groups where they would say like, “Okay, we’re the Berkeley, California Macintosh user groups. We all use Mac 512K computers, and we’re going to be on these early email list serves or meetups and talk about it.”
At first, I thought like, “Oh, interesting, I found the blind techie hub.” The more I researched blindness, the more I immersed myself in it, the more I realized like, “Actually this is not. This is a feature, not a bug.” Blindness requires one to be technologically savvy. I think part of blind culture is this comparing notes that you see certainly on your podcast.
I don’t think it’s an extra feature like your podcast about blindness culture with tech support hints. It’s like the tech support is a core feature of how to exist as a blind person today. I think, if anything, that’s one shot at an answer to that very complicated question.
Jonathan: Just coming back to Braille, so many professionals talk it down. They say it’s not necessary for people like you to learn Braille. I wonder whether that’s a way of trying to manage resourcing, which is very poor still where Braille is concerned. I should say, no one can write the perfect book because Braille is spelled with a lowercase B throughout it.
Andrew: I knew we wouldn’t finish this conversation without you getting me on the [unintelligible [01:29:25].
Jonathan: Yes. That was disappointing. Notwithstanding that, what role is Braille now playing in your life?
Andrew: You mentioned this sort of my approach to learning these skills before I strictly need them. I started using a cane, and it felt like an affectation. I felt like I was wearing a costume. I didn’t really need it, but it felt like I should probably figure out how to use it. Then months or years went by and, lo and behold, I realized that it was saving me from a lot of mayhem. The same thing with a screen reader. It was almost like practicing Latin or something.
I was like, “Okay, I guess I’ll turn on the screen reader once or twice a week on my phone and on my computer.” I started doing that really when I first started writing the book, and then by the time I finished the book three years later, it was on all the time. I could still see with magnification, but my eyes fatigued really quickly.
Braille is the last of those things that still feels a little bit like a hobby, like I’m making myself read it, but it’s not a part of my workflow the way that a screen reader or a cane is in my daily life. I know for a fact that the way right now my process is I’ve got a big external monitor with the colors inverted, the type is huge, and the screen reader is on all the time. I’m reading something, and I’m mostly listening to it, but then I might look at the screen depending on how carefully I’m trying to read it. I know that as magnification becomes less and less viable, Braille will be there to rise up and take its place.
I’ll still be listening, but then if I really want to like close-read a sentence or dig deep into a text, instead of slowing down and forcing my eyes to do it with magnification, like I do now, I’ll do it with Braille. I also think just I’ll get faster, hopefully, and be able to just read books. If I really want to read a book with care, I’ll read it in Braille.
Jonathan: You’re also brave enough to tackle the whole question of whether a blind person is reading if they’re consuming an audiobook.
Andrew: Yes. I think you and I might differ on this question. I was thinking about John Milton, for example, the famous English poet who lost his vision and then wrote Paradise Lost. This is before the invention of Braille, and he dictated all of his work. You could make the argument that he learned to read visually.
As he was dictating, he had a sort of maybe a mental text that he was seeing, but I don’t know. It seems far-fetched to me to have the idea that John Milton was illiterate when he wrote Paradise Lost, just because he had to dictate it. I think reading happens in the brain. Whether it’s happening tactilely, or visually, or auditorially, these are all different modalities with different affordances.
I’m not making the argument that reading Braille gives you the same experience as visual reading or auditory reading, but I do think that they’re all bringing the text in different ways into the mind, and that’s where the good stuff happens. That’s what’s most important. I guess I’m more flexible in my definition of literacy and reading in that way.
Jonathan: I suppose there could be a difference between storytelling and literacy because in that example, Milton was not only dictating what was in his head, but he also then had to have somebody read that back to him to verify that that was in fact what he wanted. He’s neither reading it nor writing it personally, is he? I guess it comes down to what one’s definition of literacy is.
Andrew: Absolutely. I think one part of this conversation that’s interesting is to think about who’s doing the reading back. I think it seems that you place a lot of value on the idea that when you’re using a screen reader or if you’re using an amanuensis, like Milton’s daughter is reading back to him, you don’t have the agency there, they’re reading back to you. Whereas in Braille or visual reading, you’re in control.
I guess, for me, when I re-read a sentence visually, or I re-read it in Braille, I have a sense that I’m reading it back to myself just as his daughters were. It feels a little different, but I think ultimately, it’s the same thing. It’s like, “Play it again, Sam.” You read it back, and you read it over again. When I’m wring, and when every writer writes, you read that same sentence over and over again. I don’t see a significant difference between whether my eye is reading it back to me, my fingers are, or I’m doing a JAWS command to get it to read back.
Jonathan: I guess the closest example I have to that kind of process is when I used to do theory of music with the Royal Schools of Music many years ago now. The Braille music system is completely different from the print music system. If you wanted to dictate something for that exam, which was a standard mainstream print music exam, you would have to have an amanuensis. What I found helped me was to write my music compositions down in Braille music first, and then dictate them so that it could essentially be translated at that point.
I think if you’re a Braille reader, the process of dictating something and having someone read your dictation back to you versus the process of writing something down yourself and reading something back yourself triggers a different part of the brain. I think you do acknowledge that in your book.
Andrew: I do. I think when I read in Braille, I do feel a stronger connection to the experience that I have reading visually, even to the degree where when I’m lying in bed and I have a Braille display on my lap, I find that my head unconsciously travels from left to right as I go from one side of the Braille line to the other, almost like I’m watching a tennis game on my ceiling, even though it’s pitch black in the room. There’s something about that visual reading that’s connected to the tactile reading there.
Also, as you say, just in the experience of how the words appear in your mind in the silent reader’s ear, that visual reader’s experience when you silently read, I think Braille gives you. There is something about hearing Eloquence or whatever voice is reading or the author themselves reading an audiobook that overwrites that silent inner voice. That is a loss, I think. That’s why I’m putting so many hours into practicing Braille because I do value that ability to read silently.
Jonathan: Do you draw any distinction between when a human narrator, for example, on an audio version of a book is reading to you versus when Eloquence is reading back to you?
Andrew: Yes, this is something that I’ve been exploring a lot. It’s only been a few years now that I’ve been a screen reader user and a largely non-visual reader. I still read visually, but if it’s going to be for anything more than a couple sentences, I reach for the audio quickly or the Braille. For example, Toni Morrison’s Beloved is a recent novel that I downloaded and loaded up through Bookshare into Voice Dream Reader.
I just couldn’t get into it. I just was lost. I knew it was like, everybody I respected called it one of the greatest novels of the 20th century. I tried a few times, and I maybe tried to slow it down a little bit. I was having trouble with it. Then I downloaded Toni Morrison herself reading it in audiobook form, and I was off to the races. That book wrecked me as a beautiful, beautiful work of language art.
I think there was something about the way it was written that I find that I can read pretty dense texts like academic stuff really fast in text to speech, but when a writer is playing with language in ways that are unexpected and their sentences are maybe written in Black American English as a lot of the dialogue in Beloved was, or different registers that my ear isn’t ready for, it’s not expecting, then I think the author’s voice is so important, or just an intelligent narrator. Because they can parse some of that for you, or, of course, Braille because then you can parse it yourself.
Jonathan: Audible these days, and I guess audiobook publishers, in general, probably, talk about books being performed by someone now rather than simply being read. I find that interesting. A new turn of phrase there.
Andrew: It’s an accurate one. I recorded my own audiobook that’ll be on Audible and ideally, I think, certainly on BARD eventually too. It felt like a performance. It was acting. I had to pretend like I had just had all these ideas and told these stories just right there in the moment, even though they were very old and stale in my mind by that point.
Jonathan: What was the process that you were using to get that done?
Andrew: Well, I told you just a moment ago that if I have to read more than a sentence, I use text-to-speech, but I rallied myself. I have a 16-inch laptop screen, and I had inverted colors. The typeface was huge. I think it was probably like 30 point or something like that. I found a typeface that was produced by the Braille Institute in Los Angeles called Atkinson Hyperlegible that I found at the last minute that actually is hyperlegible.
My idea was to scroll continuously and just read and scroll because I could really only have like half a sentence on the screen at any one moment.
Then, to my dismay, on the very first day of the recording session, the engineer said to me that his microphone was picking up the sound of my scrolling. [chuckles] I had to pause basically between every comma. I was a little bit leaping, like in a video game, a character just leaping from comma to comma, and just clinging to the comma, taking a breath and then keep continuing.
If I had not had experience reading aloud from doing radio and podcasting work in the past, I think I would’ve been in deep trouble, but I managed to keep– I knew the sentences so well because I’d read this book with a screen reader, especially I think just hearing them hundreds of times at this point probably. I knew how the book went. Even though I had to pause, and I would say once upon a time, scroll, scroll, they’re going to have to cut out all the silences, but they played a little bit for me having cut out the silences, and I was surprised at how natural it sounded.
Now if you listen to the audiobook, you’ll know that basically every six words there’s me going, “Okay.”
Jonathan: Yes, I get told off for hearing the edits and things and pointing them out, so I’m almost tempted to get the audiobook just so I can hear what it’s like and say. [laughter] In terms of the technology that you’ve been using, there was almost a little throwaway remark that I found quite interesting in the book relating to the fact that despite your long background in Mac, and you referred to this earlier, you found that actually, you could be more productive by switching to Windows and JAWS.
Andrew: Yes. This is something that right in the later stages of writing the book was a deep rabbit hole that I fell down, that is not well represented in the book. Although, yes, I think somewhere in the acknowledgements or somewhere, I think there is one sentence where I just had to get a dig in. The short version is that, while I was writing the book, I also started to do more freelance magazine writing, and also my book editor started to get me edits back on chapters.
It was all in Microsoft Word, and it was all in Track Changes. I was using a program called Scrivener for the Mac, which I liked and was working pretty well with VoiceOver and was very easy to magnify things nicely, but then once I started to have to be in Microsoft Word on my Mac, just everything started to devolve. Then, when I found Listservs, and back to that blindness user group idea, I was seeing comments like, “Oh, yes, it stopped working for me for a month, but now it works again.”
I just thought to myself, “How am I going to have a month where I can’t use Word if I’m on deadline, not only with this book but with this magazine story?” The other thing that I found was just because I’m reasonably technically proficient, but I’m not the kind of person who wants to figure this out entirely on my own. I just found a much stronger community of blind people online talking about JAWS and talking about Windows and talking about Word. There were tutorials and there was the Carroll Center. I’m trying to remember his name.
Jonathan: David Kingsbury.
Andrew: Yes. I found David Kingsbury’s Windows Screen Reader Primer, and that was the book that I wanted. Nothing existed like that for the Mac. That Mac has its own documentation, but I found it wanting in many ways. It’s the longer version, but as soon as I got Windows and Microsoft Word and JAWS, and figured out the basics of it, I just was shocked at how much more usable it was for me.
Jonathan: You put yourself through a little bit of training at an NFB training center. Was that purely as a research exercise for the book, or has it helped you live a better life as a result of what you experienced there?
Andrew: Absolutely, both. It’s funny. At the very beginning of this whole process, when I was first going to an NFB National Convention, I was talking to my friend who’s a cited journalist, and I was asking him for advice because he had a lot of experience writing books and magazine stories. He said, “You’re a true participant observer,” which is a phrase that comes from anthropology or the social sciences where you’re not just going in there as an academic to study a community, but you’re doing both, you’re participating, and you’re observing.
That’s really been the guiding ethos for me writing the book. Certainly, was true at the Colorado Center for the Blind where I was there. I presented myself as a journalist, as a man writing this book, but I was wearing sleep shades, and I’m going blind, and I needed those skills at the same time. In a way, it was an ideal situation. It was more intense probably than the average journalistic experience, but also absolutely the things I learned there, both practical and philosophical and emotional, I use every day still.
Jonathan: The use of sleep shades is contentious. What’s your verdict on that?
Andrew: It’s a little bit like we were saying about the NFB more broadly, which is to say it’s not for everybody. One thing that I found, and that I think came out with some of the criticism that the NFB has gone through in the last couple of years, I think there are folks with multiple disabilities who go to centers like that, and have really negative experiences and also experience microaggressions around race and gender.
I do think that it’s not for everybody. I do think that centers deserve a lot of that criticism and do need to change in some significant ways. I think the core of it, for a certain blind person, there is no substitute, and it’s transformative. I saw it happening in myself, and I saw it all around me with students there. I think those criticisms are important. I also think the basic ideas of how the center works, and I think the sleep shades are an important part of that, is really powerful.
Jonathan: When you’re experiencing such a profound change as this, it also affects loved ones. You cover the impact of your sight loss on your wife and son, and some of that is actually quite raw. I was left with the impression that there’s an emotional conflict for you in terms of wanting your wife to recognize you as the man you’ve always been, but also wanting her to acknowledge your vision impairment.
Andrew: Yes, that was a difficult part of the book, but it felt really important for the simple reason that that was something I hadn’t seen in other books about blindness in the way that I was experiencing it and felt like an important thing for anyone to take from what my experience could offer. Someone said to me that when one person and a couple goes blind, both people and the couple go blind.
Not literally, of course, but there is a sense in which the partner has to, if the partner is sighted, they have to inhabit blindness in a way that it can be uncomfortable and that they wouldn’t otherwise have had to. There’s a feeling with my wife, Lily, where I feel like I’m always a step or two behind blindness because my vision is changing, and I’ll figure something out, and then my vision will change, and I’ll have to summon my resources and figure it out again.
Then she’s a couple of steps behind me. I have to have compassion for her, but I also have to be direct and say, “Hey, I know I’ve mentioned this a couple of times, I’m not angry, but really just got to keep that chair pushed in. My toes aren’t going to last much longer.” That’s a silly example, but those things add up. I think I started to recognize that for our relationship to grow, to continue growing, I needed to be more honest with myself about what I was going through and more honest with her, which was more difficult than I had originally realized.
Jonathan: It’s good that it is growing, isn’t it, because not all relationships survive something like that?
Andrew: No, not at all. Frankly, I can appreciate why because I think there are certainly situations where blindness can come completely unexpectedly. The partner had no idea what they were getting themselves into, so to speak. Even in a situation like mine when I proposed to Lily, and then we were walking back to the car on a hike, I said, “Remember, I’m going blind.” It was a joke, but in my mind, it didn’t feel like a joke because I really wanted to know, are you ready for this?
The difficult part of that question was that I had no idea what I was referring to. I knew this big, scary thing was coming, but what did it mean? What does it mean to have a blind husband? That’s something I’m still figuring out.
Jonathan: Your son, Oscar, sounds like a great kid. It made me smile in so many places because in my own experience with four children who were sighted, my oldest daughter in particular was just convinced that all daddies read Braille and all mummies read print. My oldest son would actually, when he was little, get very excited about something that was on the TV screen and grab my fingers in his little hand and take me over and put my hand on the TV screen so that I could watch what was on the TV. He just got it. For Oscar, it’s different, isn’t it? Because what he’s seeing is a changing thing. It’s not a constant.
Andrew: Yes. That’s been interesting in its own way. He’s 10 now. When I first started reading Braille, or when I first started learning it, he was probably five or so. What better thing for a five-year-old than the ABCs in the tactile form. He was just the perfect audience for that and really motivated me because it wasn’t this strange, sad thing I was doing off in my own. It was like this fun family thing that we could participate in together. That’s really been the spirit of a lot of this stuff.
If there was a moment when I first started using a cane and around the same age, probably five years old, he would grab it and start swinging it around. Of course, I wanted him to be safe, but I had this strong impulse to take it away and say, “No, this is my special important assistive device.” I realized quickly like, no, it needs to be a natural fun thing for him. It was weird to see him walking with this, however long my cane is, this six-foot-long cane, but I wanted it to feel like a normal fun thing. That over the years, has grown and grown.
Jonathan: Yes, because he’s going to become a teenager, and most teenagers go through a phase where they decide that being with mum and dad isn’t cool, blind or not, so make the most of that.
Andrew: Absolutely. Yes. The days are numbered. He’s 10 going on 17 at this point, so I know that. Yes. I’m enjoying it while I can.
Jonathan: We are recording this before the book is published, but I will be interested to see what reaction you get from all aspects of the community to this book because for some it will be quite confronting. I’m mindful that with this podcast, which I guess has the thesis behind it that you can live a good life with blindness and low vision.
That isn’t to say that being blind can’t be a pain in the butt at times, and there are various reasons why that is clearly the case, but that it’s not the kind of thing that should ruin your life. What I have found is that there are people, particularly who have gone blind later in life or in similar circumstances to what you’re experiencing now, who don’t believe me, who actually think that I must not possibly feel the way I do about my blindness and that this is a huge fabrication and a huge fiction and a bit offensive. I wonder whether you will confront that reaction from others in your position.
Andrew: I’m certain that I will. The thing that I’m even more mindful of that I’ve already gotten in my own life from pretty intimate quarters as well as from strangers is this sense that there must be a big emotional upheaval. There must be feelings of terror and grief that I am papering over with all this business about beauty and the curiosity and the power of blindness. I think that that’s a question that I’m going to encounter more and more as the book comes out into the world.
I think it’s just that people have this very fixed idea about blindness as a tragedy. I try to be really honest about that in the book, and I’m not saying that I don’t have any negative feelings about this experience. I think it would be really disingenuous of me to just say like, well, I read some old, Kenneth Jernigan speeches, and I’ve figured out that it’s great, so here I go. Of course, there’s grief if you grow up, if you live 30 or 40 years with vision, and then have to figure out how to do it with very little, if none.
The other side of it is really true for me too, and I’m not just manufacturing all the excitement and interest that I feel around it. I feel ready to confront those criticisms and those skepticisms, but yes, I think you’re right to suggest that they’re coming.
Jonathan: This is a personal journal, I guess, and it’s a little bit of a history memoir as well. It’s a mix of things. I was left, after I finished the book, wondering is there some sort of primer, like David Kingsbury’s book for Windows that you mentioned, some sort of primer that needs to be written by someone like you that actually doesn’t necessarily chronicle your personal journey in the way that you have, which is a very useful read, but actually provides some empathy and understanding and tips about getting to the point that you have.
Andrew: That’s an interesting suggestion. I guess I would say, I think if you look at the book– You said you read it twice. I’m not doubting that, but I think that is the book I wrote in a way because it’s my personal journey, but every chapter– and then if you want to get nerdy, the notes on sources at the end, which can point you to many other books, each chapter tries to take up what I found– If we’re talking about The Country of the Blind, it’s like these are the 12 principal regions that I found, let’s say.
I don’t structure the book exactly like that, but thinking about blindness and technology or blindness and identity, including identity politics around race and gender, blindness and reading, blindness and relationships. In a way, I think this could be that primer. Primers are difficult to read, right? They’re reference books. You don’t necessarily want to go from the beginning to the end. I try to write the book with my own story in it, in part to pull the reader through.
It gives it a little bit of a narrative engine that runs, that then along the way, you might pick up some of those tips that you’re talking about, although certainly, it’s not going to be as useful as step one, step two, step three.
Jonathan: Right. I see what you’re saying because the anecdotal side of it keeps people drawn in, doesn’t it? Hopefully, absorbing almost by osmosis the rest of what you’re saying.
Andrew: That’s my hope.
Jonathan: Look, it’s been a pleasure to talk to you. I look forward to hearing responses and reactions from listeners. What’s the availability of the book in accessible formats at this point?
Andrew: When we’re speaking, it’s not out yet, but I confirmed with my publisher that it does get submitted to Bookshare. All of their books go to Bookshare. I think in my experience as a Bookshare user, happens basically the day the book is published, which is July 18th. The deal with BARD, I know that it’s on BARD’s radar. I don’t know exactly how things make it through the pneumatic tubes of the internet these days, but I’m sure it’ll be on BARD this summer.
That’s the best I can do, but it’ll be available on the Kindle store and in Audible and Libro.fm and all those good places on July 18th, on the pub day, and then shortly thereafter, on all the accessible channels, too.
Jonathan: I cannot thank you enough for your time and also just for how much of you you have put into this book. It’s an extraordinary read, and I liked it very much. I really appreciate having the chance to talk with you.
Andrew: I’m so grateful, Jonathan. I think I’ve made it clear, but your podcast is a huge resource for me and for so many others. It’s been a treat to talk to you.
Jonathan: Thank you.
Jonathan: Transcripts of Living Blindfully are brought to you by Pneuma Solutions, a global leader in accessible cloud technologies. On the web, at pneumasolutions.com. That’s P-N-E-U-M-A solutions.com.
This email revisits a subject we were talking about some time ago. It’s from Nolan Jenikov. He says, “Hi, Jonathan. Not sure if this is suitable for the podcast. As you said, you would move on from this discussion, but I am very interested in your thoughts.
This is pertaining to the discussion around literacy. I’m rather a ways back in the podcast feed, and I’m enjoying hearing what people think on the topic of reading Braille versus listening to text-to-speech and what qualifies someone as being literate. I’m in my 30s. I have optic nerve atrophy plus. This condition varies amongst those affected but results in different kinds of neurological issues.
Currently, I have lost most of my lower limb function and use a wheelchair to get around outdoors. As a child, I didn’t have any recognizable difficulties other than vision loss. I was pushed quite hard to learn Braille, and I did learn grade one successfully and began to learn grade two, but was always quite slow with my Braille reading. It wasn’t recognized until later on that this was due to my neurological issues that became more and more visible as the years progressed.
Since grade six or seven, that’s around 11 or 12 years old, I have only used screen reading software. I’m currently finishing an undergrad I began in my mid-20s. I agree with you that literacy is quite important. I have begun to read aloud while listening to JAWS as if I were presenting this information to someone or reading them a book. Being unable to read myself, I am wondering if there are any other skills you think I could work on to circumvent some of the difficulties the inability to read Braille might present in the workplace.”
Great to hear from you, Nolan. Thank you so much for listening to the podcast, and also congratulations on continuing to pursue that degree. I think you are on the right track. As I think I may have mentioned several times on this podcast, back in the FSCast days when I was the host of Freedom Scientifics podcast, I interviewed Nas Campanella, who at that time was a newsreader on the ABC, the public broadcaster in Australia. She also has a condition that prevents her from being a Braille reader.
She had Eloquence chattering away in her headphones with her news bulletin, and I’m sure she would have pre-read it as any newsreader would pre-read it, but she had Eloquence chattering away at just the right speed, and she would repeat it back, and she came across to listeners as a very fluent newsreader.
If you go all the way back and listen to that old FSCast episode, we got a feed of what she was hearing in her headphones and also a feed of her delivering the news so we could fully hear the effect. It was quite impressive. People can get really good at this. If Braille isn’t an option because of some other impairment, then people do have something in their ear, and they’re using JAWS, or whatever screen reader they choose to use to hear something and repeat it back, and they can get really good at that. They can become quite effective. I wish you all the best.
Thomas: Hello, Jonathan and Living Blindfully listeners. This is Thomas Upton. I’m here to talk about something that surprised me. This is iPhone-related. At the time of this recording, today is Monday, July 17th, 2023 here in the United States. I had updated to the first public beta of iOS 17. Since my storage was almost full on my iPhone, since the update requires some storage to install, I had to delete some apps.
One of the apps I deleted was the Backpack Studio app. After I updated to the public beta of iOS 17, I tried to reinstall Backpack Studio. When I searched for it, the app somehow disappeared. Then I went to the Backpack Studio app website, backpackstudioapp.com. I clicked the button to open up the menu. When I clicked Get Backpack, I get a message saying, “This app is not currently available in your country or region.” I emailed the developer of the Backpack Studio app, and I did not get a response so I’m waiting for a response.
I love Backpack. It’s a great app for recording and broadcasting and uploading to certain sources. I love it. I don’t know why it’s not available in my country or region in the iOS App Store anymore.
Jonathan: I agree with you, Thomas. It is a great app. He’s taken so much care. He being, Ed Filowat, the developer of Backpack Studio. To ensure that the app is fully accessible, it does some very cool things. I have a vague recollection of this happening once before, and it was some sort of error. Hopefully, that’s the case again. Hopefully, development has not ceased, and the app hasn’t gone away because, of course, you can’t back up your iPhone apps to your computer anymore, at least not with iTunes. I think there are other ways of getting it done, third-party tools.
When a developer pulls an app, if you buy a new iPhone and you restore from the cloud, you may not get that app back again even though you paid for it. Hopefully, there’s a simple answer to this, Thomas. You may well have even heard by now. If you have, keep us posted on the availability of Backpack Studio. It’s a very cool app.
With that, I am out of here for another week. Looking forward already to being back with you for Episode 241. In the meantime, remember that when you’re out there with your guide dog, you’ve harnessed success, and with your cane, you’re able.
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