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Voiceover: From Wellington, New Zealand, to the world, it’s the Living Blindfully podcast – living your best life with blindness or low vision. Here is your host, Jonathan Mosen.
On the show this week: the Beatles’ new single is here, ACB makes it to Mastodon, experiments with hearing technology, is the current Victor Reader Stream as good as earlier generations, and journalist Selena Mills discusses her book about blindness called Life Unseen.
It is wonderful to be here. It’s certainly a thrill.
Episode 256, so let’s have a look at area code 256 which belongs to quite a bit of Alabama.
Like that old song about “I come from Alabama with Susanna on my knee”. Wasn’t that it? Or maybe that wasn’t it.
Anyway, Huntsville. 256 covers Huntsville, Alabama. And I think there is a Florence in Alabama, which is marvelous! Marvelous because Florence is the name of my granddaughter. So how epic is that?
Meanwhile, on the country code side of things, country code 256 belongs to Uganda, where there are almost 48 million people according to the 2023 census.
So if you’re listening from country code or area code 256, a very warm welcome to you. Enjoy the moment. It doesn’t come along often.
I’m recording this podcast at [4:30] in the morning, [Woot! on reverb] because I have just finished on Mushroom FM doing a listening party. The highlight of which was, of course, playing the Beatles new single Now and Then.
And my goodness! One day, I’ll do a behind the scenes thing because I had so many sources here on the mixer. And I was nervous about doing this, you know, because you realize you’re a part of history.
I’ve been very fortunate over the years to have been involved, not just in some really cool Beatles stuff, but I remember actually being on the air on the radio when the Iraq war (the first one) broke out in 1991. And bringing that breaking news was quite an extraordinary experience. And there’s so much information coming at you from all over the place. So there are certain moments when you do broadcasting that you think this is significant.
I was determined to get Now and Then on the air on Mushroom FM as quickly as humanly possible. I had a bunch of services and sources running here on the mixer [laughs], and found the first one that allowed me to put it to air just before the top of the hour.
And when I’m doing something like that, I find I go into broadcasting mode. You just have to focus. You have to get it done.
So I played Now and Then, and I heard it. And it wasn’t a complete surprise because we had the documentary about Now and Then. And I’ve had the demo for years of this. It’s a pretty dodgy sounding cassette.
But I knew what the melody was going to sound like. I knew it was a very sad, wistful kind of song.
And I also knew that some people would think, “It’s kind of a shame that the Beatles aren’t going out with a bit of bounce.”
So I played the song. And then, I took listener reaction. And some people liked it, and some people didn’t. And some people, it grew on them.
And then when the show was over and I could calm down and the adrenaline wasn’t pumping, I really was able to enjoy it and listen to it, and I like it a lot.
And the way that Paul has slightly reworked it and deleted some of the lyrics, one line of which would have been particularly objectionable in 2023, it’s more of an appreciation of the relationship between John and Paul.
And I think that’s made even more poignant by word that apparently, when John last met Paul at John’s apartment at the Dakota in New York, John apparently put his arm around Paul’s shoulder and said, “Think of me now and then, old friend.” And maybe that’s one of the reasons why now and then was such an important project to Paul.
And even if you’re not moved by the music, the technology behind this is absolutely extraordinary.
You can hear the original demo on YouTube. There’s also a documentary on now and then that the Beatles put together where you can hear some snippets of the original recording and the nasty power hum that’s running through it, apart from anything else.
So I think this one’s a keeper. I think it really does stand up very well.
There’ll be mixed reactions. But if you’d like to comment on what you think of Now and Then, what’s been billed as the final Beatles song, you are, of course, very welcome.
We are going to be doing another special because next week, the fun just keeps on coming. Because arguably, the most famous greatest hits compilations of all time – the 1962 to 66 and then 1967 to 70 known as the Red and the Blue albums are being re-released with some new tracks, and also a lot of new stereo and atmos mixes that we haven’t heard before. And that have been made possible, thanks to this technology that Peter Jackson right here in New Zealand has developed.
Now, all being well, we should be able to revert to normal conditions. And that means that the albums should drop in New Zealand before they drop anywhere else. So with any luck (unless there’s some sort of major snafu that I’m not aware of), we’ll be on the air at 9 AM Eastern Time on Thursday, the 9th of November, and we’ll be playing you the new mixes.
Now, there are a lot of tracks on these 2 albums, and I won’t play you the mixes that we’ve already heard because they’re also including tracks from Revolver, Sgt Pepper, The White Album, Abbey Road, Let It Be. And when those albums were released and remixed, we played those on Mushroom FM, so I won’t be doing those. But I will play you all the new mixes that are coming out, and there are a lot of them. So good to hear this material being refashioned in stereo and Dolby Atmos.
So do check the Mushroom FM schedule, and thank you to the many people who joined me for this experience.
We all heard Now and Then together. If you’re a Beatles fan, or perhaps you want to know what the fuss is about, this is actually a great way through these compilations to become familiar with the Beatles discography.
So that’ll be, with any luck, at 9 AM Eastern on Thursday, the 9th of November, on Mushroom FM. Go to MushroomFM.com, and visit the schedule page to find out when that is in your time zone.
Advertisement: We can make transcripts of Living Blindfully available, thanks to the generous sponsorship of Pneuma Solutions. Numa 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. And one of the ways I use it is to either receive or provide technical support from family members.
I’m kind of the 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. So 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 Narrator on their system, or if you’re using NVDA, you don’t even have to do that.
It’s an amazing tool, so do check it out. RIM from Pneuma Solutions, available now for your PC or your Mac at at getRIM.app. that’s G-E-T-R-I-M.app.
From time to time, it’s come up on Living Blindfully that the American Council of the Blind are not on Mastodon. And this has confounded some people, including me.
So it’s important that I let you know that the American Council of the Blind’s national office now is on Mastodon. And if you want to follow them, you can follow ACBNational@Mastodon.social. That’s ACB National, all joined together, @Mastodon.social.
There are some other ACB affiliates who have been on Mastodon for a wee while now. But the national office is there. They are tweeting about things such as audio description, advocacy campaigns they’re working on, and if you like this podcast, you may be interested in just keeping up with what ACB are doing.
Christopher Wright has a comment on the Userway interview. He says:
I just finished episode 254, and it was very interesting.
I am still of the opinion we shouldn’t be relying on tactics such as this to essentially bandage accessibility problems. But if you want to use them, go right ahead.
I’m curious why automated accessibility solutions are causing such an uproar, while things like video game mods, NVDA add-ons, and JAWS scripts to essentially apply band-aid fixes and increased functionality for applications seem to be no problem.
The main thing I’ve heard is they don’t work well, but I’m not really sure how or why that’s the case.”
Well, Christopher, if you haven’t heard it, you might want to go back and listen to the 3-hour special we did on this whole question. There are some examples there where people speak specifically about how the integration of some of this technology has resulted in actually a degradation of their ability to access a service.
And in one case in that episode, it actually prevented somebody from paying their rent once AccessiBe was implemented, whereas they could pay the rent before AccessiBe was implemented.
“Apple does a lot of things that make me absolutely livid. If the iPhone SE ditches the home button and forces everyone to use their ridiculous Face ID and slow, awkward swipe gesture systems, that’s the last straw.
Google has a fingerprint reader working under the screen on Pixel devices and very intuitive touch buttons for home, back, and recent apps, so there’s no excuse for Apple not to do it aside from the fact they’re extremely arrogant and think they know better than their users.
The thing Apple does right, and for which they should be commended, is making their developers properly code their software so it works with VoiceOver and other accessibility features.
If coded correctly in the first place, there’s no need to worry that an update to an essential piece of software you use for work will break the carefully crafted band-aids that allow you to do your job.
Then what happens? Will you be fired because the script developer wasn’t fast enough to push updates to once again bandage the issue? You’ll be locked out of your job until that happens.
Maybe that’s just the excuse an employer is looking for if they don’t want to deal with blindness and looking for an ADA loophole. Those claims of lost productivity will in fact be true for once.
The same philosophy applies to games like Hearthstone, though of course a game isn’t nearly as serious.
Thanks for telling me about AccessiByeBye. I’ve installed it in Brave, and would also love the ability to toggle it with a keystroke.
It’s disappointing it doesn’t appear to be for Firefox or Safari. But hopefully, that will come in time.
Band-Aids aren’t how we make the world a better place. Rather, education and working with established standards should be the way to go.
This is why I don’t use NVDA add-ons that enhance application accessibility, play video games that wouldn’t be playable without third-party accessibility mods, or enable Apple’s AI screen recognition features. These things give people excuses to not take the effort to properly code software.
Of course, if your job depends on these, do what you have to. But this really isn’t how we should be doing things in the long term.”
While it’s true that JAWS scripts may well work around some accessibility issues, they also add to one’s efficiency and productivity. And when you’re a very busy person, that really does help.
A sighted person can simply glance at the screen and glean information. It could be highlighted in a particular way, or stand out for some other reason because perhaps of the size of the print.
When you’re, for example, working in a call centre, if a call comes in, there might be some highlighted information on the screen pertaining to that caller. As a blind person, you don’t want to be listening to your speech chattering away, or hunting around on the Braille display. You need that information to be brought to your attention.
JAWS scripts level the playing field, plain and simple, and there would be many people employed today who would not be able to do the job that they are doing either at all with nearly as much efficiency if it were not for JAWS scripts.
The lack of a comparable solution on Apple is in fact, one of the reasons why I don’t think Mac is truly viable in many workplace environments.
So in more cases than not, they’re not a band-aid. They’re simply an efficiency tool. And it doesn’t matter whether the app’s 100% accessible or not. The reality is that JAWS scripts add to that efficiency considerably.
It may be that there are people who are willing to die in a philosophical ditch over this. I, for one, just need to get the work done and put food on the table, and many blind people are in exactly the same predicament. I’ll happily take the Jaws script, thanks.
Aaron Linson wants to share his take on the interview. He says:
“I was very interested in your discussion with Lionel from Userway.
I will state, for clarification, I’m an accessibility consultant licensed by the IAAP” (which is the International Association of Accessibility Professionals), “with my CPACC certification.”
Off the top of my head, I don’t recall what that stands for.
“While I understand where Lionel was coming from as a representative of Userway, I myself still have some questions about the effectiveness of these edge computing AI systems.
Secondly, I’ve done accessibility testing on websites with overlays attached where throughout testing, the overlay would automatically come on, throwing not only my testing out of order, but introducing issues that weren’t even present when the overlay was off. Now, that particular instance may have been a competitor to Userway, but I can’t remember at this moment.
I came across a document from the W3C about meeting notes when the edge computing working group was being published. I wanted to take note of who was involved, and the actions that were taken by members of both Userway and AudioEye to block comment and actively deny healthy debate within the working group.
I think the real uphill battle for these companies is that they need to gain the trust of users and professionals alike.
I will also state that I signed the overlay fact sheet. I’m willing to have my mind changed, but I want proof and evidence.
We also have to look at the fact that all overlay companies list their customers. What happens when a user goes off to a non-sanctioned site without any overlay on top? The user experience will change from the user’s perspective if they’ve been visiting an overlay’s customer site.
You want to know why there are so many frivolous lawsuits that deal with accessibility? It’s because people don’t get properly trained, for one, and AI is being touted as a one-stop shop, no human involvement, everything is right solution.
AI isn’t that one-stop solution and will always need human remediation and intervention.
I think what really hurts the overlay providers is the harm that some competitors have already done. Mistrust runs deep because of actions that were performed on bad judgment of executive members that should have known better from the get-go.”
Thanks for the email, Aaron.
I do think there are some frivolous lawsuits being lodged by fly-by-night lawyers who are seeing an opportunity to get rich quick with the ADA, and it is not doing any of us any particular favours. They are taking advantage of some vulnerable blind people. They’re just picking websites and hoping for a quick settlement, and that is very unfortunate because goodness knows there are sufficient real genuine issues out there that are inconveniencing people.
“Hello, Jonathan,”, writes Edward Alonzo.
“I hope you are having a great month of October, or whenever you read this.
I wanted to write in and tell you, as well as your listeners, that I just got a Mantis Q40 on October 1st, 2023.
I like the display so far for my job as an assistive technology trainer here in Dallas, Texas.
I noticed a new firmware update when I got it, so I connected to Wi-Fi and downloaded it here at work.
Upon listening to your podcast number 82, I saw that one of the things you didn’t like about this demo unit that you had at the time before you purchased it was the ability to switch back and forth between connected devices. If you have two computers and an iPhone connected in terminal mode at the time, there was no way to switch between those devices without going back into the terminal mode, selecting the connected device menu and then finally finding the device and pressing enter on it.
I see in the latest version, they have fixed this and made the Home key, as well as the previous and next thumb keys, the keys for being able to switch back and forth between devices connected via the terminal.
It would help if you were connected to a device, however, and cannot switch back and forth between devices while you are not in terminal mode. For instance, if you are in the editor on the Braille display, you cannot press and hold the Home key and the previous thumb key and get back into your terminal device. This has to be done from within another device that is connected by a terminal.
For instance, if you have an iPhone connected and once you switch back to your PC, like the reference you made reading emails on your iPhone and then switching back to the PC to make sure that Reaper is recording correctly, then you would be able to press the Home key along with the previous or next thumb keys and switch to the device. It will briefly show the device’s name, and then you will see the Braille from that connected device.
I like this display for many reasons, but one of my most significant drawbacks is two things. They are:
- The case is not all that protective. There is a better case for this device and you can purchase it from Executive Products. But you would have thought that if you were spending almost $3,000 for a Braille display, it would come with a better case than this.
- Something a little bit frustrating is that there is no dedicated insert key. And like in your review, no Home and Page Up and Page Down keys. I must change my JAWS keyboard to a laptop to make the Caps Lock act as an insert key.
Overall, however, I do like the display very much and I’m getting used to learning how to use it here at work and in my personal life.
Thank you for the great demo, and keep up the great work on all the podcasting you’ve done and will continue to do to keep us all informed about new products and software.
Have a great week, and we will catch you next time.”
Thank you, Edward.
Just a plug, first of all, for the JAWS laptop layout. This is something that Eric Damery and I used to say all the time when we were at Freedom Scientific.
I highly recommend that everybody, whether you’re on a desktop or not, switch to the laptop layout. It is way more efficient because you’ve got so many more commands available to you on the home row.
And it also means that if you get a laptop, you don’t have to start thinking about getting a bulkier one that has a number pad. It really saddens me how many people have become dependent on that number pad when they don’t need to be at all, and could get a much sleeker, slicker, lighter laptop if you just get to grips with the laptop layout.
So switch your desktop over to laptop layout, get with that groove, and you’ll find that it stands you in very good stead going forward.
The ability to switch devices in the way that you describe has been around for quite some time now. And in my view, it is still a subpar feature and one of the weakest things about this device that frustrates me regularly.
When you look at the Focus, you can have up to 6 devices connected. You can hold a key and go from one to six just by pressing any one of those keys, and you’re instantly there. There’s no horrible pause while the name of the device pops up on the display.
And in that scenario that I mentioned in my demo and that you just mentioned where you’re recording in Reaper, reading email on your iPhone, every split second counts. You don’t want to have to wait for the device to display its name, and then eventually get around to showing you what’s on the other device. And also, it’s laborious if you’ve got a whole lot of devices active at one time.
The way the Focus has implemented this is far better, it’s much more efficient, and it’s faster.
I agree with you about the case. I really do like the Executive Products carrying case for this device, and I wouldn’t want to go out and about with it without that case.
Let’s talk Ring Video Doorbell once again. Neil is writing in, he says:
“Longish time listener, but first time contributor from Bony Scotland.”
Welcome to you, Neil. [laughs]
I’m not going to torture the listeners with that Scottish accent any longer because it’s bad, isn’t it? So let’s move on.
“I recently purchased the Ring Video Doorbell and like you, have it linked to my Soup Dragon.”
Ooh! That’s a good name for it.
“But this seems to be the only way I can use the doorbell, as I have not yet found a way of answering the doorbell on the app or on my Apple Watch.
I was wondering, firstly, if it is possible to do it on the watch, as I would find this easier. Or are there demonstrations of how to answer and speak to the device through the app? I get the alert on both watch and app. But so far, I can do nothing with them which is very frustrating.”
Good to hear from you, Neil.
Well, the way it works for me is that I first normally hear that there’s a person at my door. Then, they ring the bell and I get another notification to tell me that somebody’s at the door.
At that point, I can pull down the notification centre on my iPhone and locate the notification that says that someone’s rung the bell. When I double tap, I can immediately hear the person outside, but they can’t hear me. That’s because your app is placed in live view when you invoke it from the notification.
But just to ensure that they can’t hear you before you’re ready to talk, the microphone is muted. So you have to locate the microphone button and double tap it, and you’re unmuted. And then, you can talk to the person at the front door.
There is no Apple Watch app for the Ring Video Doorbell that I am aware of. If anybody else knows about one, please do let us know.
Sadly, Ring has been promising HomeKit compatibility for the doorbell for yonks, and we still don’t have HomeKit compatibility yet.
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Voice message: Hi, Jonathan! This is James o’Dell from Cardiff in Wales in the UK.
I just wanted to mention something that came up on one of the podcasts recently, to do with enabling audio description on Samsung TVs.
I take your point that you made at the time that obviously, if somebody wants to use audio description in Netflix or another app, then the setting within the TV isn’t going to make any difference.
But there is a bit of an issue that I’ve seen on some Samsung TVs with enabling audio description. And basically, this issue occurs if you have the TV connected to another audio output device like a sound bar.
Certainly, if you’re connected through digital optical cable and maybe through other things like Bluetooth or, I don’t know. I don’t know exactly how widespread this problem is, but it is a bit counter-intuitive.
A lot of the audio settings are disabled so that you can’t change the settings when you’re connected to something like a sound bar. And obviously, that makes sense in the case of a lot of audio settings because things like the volume and the tone would be controlled via the sound bar. So I’m guessing they’ve disabled the settings in the TV when you’re outputting through a sound bar because you could be changing those settings and nothing would be happening.
But what they also seem to have done (certainly on the TVs I’ve looked at) is audio description has been added to that list of settings Which you can’t change when you’re connected to a sound bar or something similar. So it’s almost as if somebody has gone through and changed that so that any audio setting is disabled.
And obviously, with audio description, That makes no sense because you know you could very well want to turn audio description on or off while you’re connected to a sound bar.
So the workaround is obviously, to change your TV output temporarily to the built-in speakers. You can then go back into the settings and turn on or off audio description. And then, you can connect to your sound bar again and then the audio with or without the audio description (depending on how you change the setting) Will go through the sound bar with no problems.
Jonathan: Great bit of detective work there, James. Thank you so much for that.
This is not something that I’ve encountered here in New Zealand. We leave our Samsung TV permanently connected to our Sonos arc, and we are able to toggle audio description on and off. So it must be something different about the way that we are doing audio description in this country.
And that’s the thing about televisions. The technology around the world is different.
But that would be a frustrating one, so that’s a useful hint for anybody wanting to set up one of these TVs certainly in the UK, and possibly further afield as well.
Let’s talk about the Victor Reader Stream.
Lachlan Thomas is writing in. He says:
“Hi, Jonathan and listeners of Living Blindfully,
I’ve been a Victor Reader Stream user for years now.
I voiced my thoughts on the new Stream 3 early this year, after Jonathan interviewed 2 staff members from humanware about the unit.
I had no immediate intention to upgrade to the Stream 3 as my Stream 2 was working just fine, and met all my reading and listening needs.
However, in August of this year, the loudspeaker on my Stream 2 suddenly stopped working. I’ve had this problem before, and it usually requires sending the unit to Humanware for repairs.
My Stream 2 is out of warranty now so I knew that sending it to Humanware would incur a repair bill. And I’d have to wait until it was repaired. So I decided to buy the new unit.
The unit newly arrived. And initially, I was very excited.
But within hours, I was starting to have second thoughts. As I became acquainted with the unit, I discovered the software had many bugs. Over the next few weeks of using the unit, I found so many bugs in the software. The bugs ranged from mildly annoying, totally inexcusable, comically laughable, and downright pathetic.
From problems opening RTF documents, to hidden iTunes files being detected by the unit, to the inability to exit the user’s guide after locking and unlocking the unit, to general sluggishness and to minor instability of the software, there were so many bugs that I considered calling an insect extermination company in and I thought of spraying the unit with mortine to kill the bugs.
I remember months ago, Jenny Axler sent you an email about the SensePlayer. And I think, she stressed the importance of customers reporting bugs and operational difficulties to the manufacturer.
I have contacted Humanware on many occasions and reported all the bugs I have found to them, both via email message and the bug reporting form on the Humanware website.
My unit is currently running firmware version 1.1.0, and I can’t believe that HumanWare released the firmware in such a deplorable condition.
I know this unit is new. And often times, there are teething problems with a new product, service, or platform.
But the Victor Reader products are well-established, highly regarded, and well-liked by their target audience, and the Stream 3 is a new product in an existing and long-running product line.
There are things I like about the new unit such as the feel of the rubber buttons, the larger button size and tactile features of the buttons, and I like the new menu system and the inclusion of user accessible internal storage.
However, until Humanware release a new software version which corrects all the current bugs and seriously improves the performance of the unit, I would advise customers not to buy the new unit. I feel that the unit is not ready for sale, or use by customers. I think it was rushed to market, and needed more time to be put through quality controls and testing before it was released. I think Humanware should have delayed release of the product until its software was as reliable and feature rich as the previous product line.
If customers want a dedicated blindness specific audio player, I’d recommend the Victor Trek or the Baykel Talking MP3 Player, which you can buy from the Braille Superstore. I have the Baykel player. It’s compact, feature rich, user friendly and has very logically laid out controls, as well as features such as an FM radio, calendar with voice reminders, an alarm clock, and a calculator, among others.
If you want a Stream right now and nothing else will do, try to find a Stream 2 on the used market, or see if your local Humanware distributor has spare unsold stock.
If you really want the Stream 3, I would strongly recommend seeking assurance from Humanware that the bugs have been addressed before spending your money on it. Or you could just use a commercially available mobile device such as an iPhone or Android device.
I generally really like Humanware’s products. I’ve owned a few VoiceNotes and Streams over the years, and I’ve always found Humanware’s customer service to be exemplary. So you can imagine how unhappy and upset I was.”
Now coincidentally enough, Rich Yamamoto has forwarded me an email from Mathieu Paquette, the product manager of the Stream, who has said on an email list:
“I know everyone is waiting on a Stream 3 update, so I wanted to give a quick, well, update on it.
Testing is going really well, tune-in is working out to be really great, and we have squashed quite a few bugs.
So our plan was, and still is, to release the update by the end of October. I’m currently aiming for an October 31st release.
However, we have found a bug last week that’s also present in 1.1 that happens with some SD cards that are 256 gigs or larger. The team is currently in debugging mode and looking into it.
At first glance, it appears to be a driver issue, which is bad news as changing a driver can have other unforeseen impacts that we’ll have to test out.
So there are 3 scenarios at this point.
- We find a fix rather rapidly, and we meet the October 31st release date. That’s best case.
- We find a fix, but it takes a few weeks to fully implement and test. In which case, we’ll push back the release by a few weeks. I would say November 21st would be my very latest for this scenario.
- We find a fix, but estimate that the fix will take more than 2 to 3 weeks to implement. In this case, we’ll release 1.2 on October 31st with the bug still present, and fix the issue in 1.3.
I’m hoping for 1 or 2, and we are working very hard towards that.
Also, to set expectations, there will still be a few bugs with this release.
I’m expecting 1.3 will be the more definitive version. Not to say it will be the last, as I have already stuff planned for 1.4. But 1.3 should be the last significant bug fix update.
Switching gear, I’ve seen some people mention that they would like to see more frequent updates, and you know what? I 100% share the sentiment.
I also wish, as a PM,” (That’s Product Manager, not Prime Minister. I don’t think Mathieu’s Prime Minister yet.), “that I could have more updates on my products. If it were up to me, we would have 5 or 6 updates a year.
But the reality is that we’re a small team at Humanware, and the team that works on the Stream also works on other products such as the Braille readers. And while some features can be co-developed and ported on both the Stream and the Braille reader, that’s the exception, not the rule.
I like to say Google and Apple have more janitors than we have employees. We’re a small, niche market, and we do the best we can with the resources we have.
But rest assured that the team is dedicated, passionate, and we want to make sure to deliver you the best we can. I understand we haven’t always hit the mark in the past, but it’s not for lack of trying.
On a final note, we are getting good cooperation from Audible on issues we’re encountering, so that’s very positive.
And I have a meeting with another third-party tomorrow. I won’t say who yet, but I think it’s something that a lot of you would love.
More info to come.”, writes Mathieu.
So what do you think? If you own a Victor Reader Stream 3, are you happy with it? Is it super buggy? Do you think it was released too early?
864-60-Mosen is my number if you want to call in in the United States and leave a message there. Or you can record an audio message or write an email and send it into opinion@LivingBlindfully.com.
Caller: Hello, Jonathan and Living Blindfully people. This is Jane Korona from Silver Spring, Maryland in the United States.
I see that on episode 252, we’re still talking about songs that give us the creeps. I wasn’t going to say anything about that because there is one that truly gives me the heebie jeebies.
I was going to play it when I was going to record this message now. But I played the first couple of notes of it, and my heart went pitter patter so much that I had to turn it off.
Anyway, the song that really gives me the willies is They’re Coming to Take Me Away by Napoleon XIV. You know, “They’re coming to take me away, Ha-Haaa!” You know, that “Hee hee, ha ha, To the funny farm, Where life is beautiful all the time”
I can talk it, but I can never play that song, and I don’t know why. I even have it in my collection, I do. But I never play it. it just scares the … Oh, hate it!
Anyway, so that is my contribution to songs that are very uncomfortable to play. I hate that song.
Jonathan: [laughs] See what you’re trying to say, Jane, is that it scares the soup out of you or something. Yeah.
That is a great song, though. It’s got a twist in the tale, of course.
If you haven’t heard that song, you really should hear it – They’re Coming to Take Me Away, because you think it’s about someone, and it’s not about a someone at all.
Really, you know. What else does it say? “with trees, and flowers, And chirping birds, and basket weavers Who sit and smile and Twiddle their thumbs and toes And they’re coming to take me away, HAHAAAAAAAAA!”
Yeah. I quite like it myself.
Caller: Hey, Jonathan. It’s Jim from sunny Florida. But believe it or not, it was actually 3 degrees cooler here than New York City yesterday morning, so I don’t know. Climate change, right?
Anyway, I wanted to go through a few quick things real fast with you.
First off, I wanted to tell you that uh, I’ve got uh, iPhone. And when I try to do things, sometimes, I hear the Siri female voice, as well as Alex, the one I’ve chosen. So I don’t know why that happens sometimes, when I’m in this thing.
Maybe you could explain that, or someone knows.
Also, I know you’re familiar with things like DuoLingo, and a few other things that are out there. I didn’t know if you knew any other language learning apps that were blind friendly.
Because I noticed DuoLingo has a part where you’ve got to type stuff in limited time, and you need obviously, spelling if you’re learning a new language. So it took several years of Spanish, but I’m kind of picking it up, maybe learning a little bit of something else.
So if anyone knows of any good, either free or paid iPhone apps out there that could be used, that’d be great.
I’m a plus subscriber. Keep up the great work, enjoy living life.
Jonathan: Ken Scott is commenting on some recent things that we’ve been discussing.
First of all, Mac versus Windows. He says:
“I am glad that my tendency to be slow in commenting did not lead to the failure to point out that blind people planning to work for others should focus on Windows when making their operating system, AKA OS choice.
One commenter found Windows screen readers providing progress information bothersome. All of these Windows screen readers that I have used or know of have ways of silencing the progress beeps or announcements, if desired.
There was also an assertion about Windows not supporting the ability to use PCs directly with smartphones to make calls and text messaging. While it may not be as easy as that for iPhones and Mac PCs to set up, Windows 11 does have these functions for both iPhones and Android smartphones.”
Yeah, I’ll just interject here and say it’s nowhere near as seamless, slick, and powerful. but you can do some of that now.
And I really do like the phone link app for Windows, but I do miss the integration that comes with iCloud syncing. It’s amazing.
Audible and Victor Reader
Audible has been reducing the platforms that can play Audible content ever since it was bought out by Amazon. If you read the blind/visually impaired players page, you find a couple of blindness-specific products that have few models and a few mp3 player devices. All of the listed devices have not been updated in years, and no new ones have been added in years.
Perhaps, Humanware can get support for the 3rd generation of the Victor. I am not holding my breath for this happening.”
Well, you won’t need to hold it much longer, Ken, because they’re actively working on it now. And apparently, Amazon is cooperating with Humanware on getting this over the line.
Ken says: “Amazon is committed to the idea that everybody is using iOS or Android smartphones or tablets for on-the-go media consumption, so have no interest in supporting other options.
The fact that even with a good screen reader and application design, a touch interface is inherently less efficient than a purpose-built player with physical keys for audio-media consumption of the blind is ignored.”
See, I’m not sure I would agree with that premise, Ken.
I don’t think that my use of a podcast app or the Audible app on my phone is any less efficient than using a Victor reader stream. I know exactly where everything is. I don’t have to swipe around the screen. I just hit the buttons. They’re virtual buttons, sure. But they are buttons, and I just don’t see that there is an efficiency hit that I’m taking there.
Ken continues: “Ride share driver issue.
I have argued for years that in terms of actual service provided, Ride share is not meaningfully different from traditional taxis or cabs.
Now that venture capital is no longer available to ride share companies to provide various hidden rider and driver subsidies, the market conditions that created the problem for traditional taxi and cab companies are plaguing the ride share companies.
All of the proceeding is background for the following point: Get used to having drivers not pick you up if you are a service dog user, or you are just using a cane.
I need to make one additional point. Due to the weakening of many laws and regulations at the request of ride share companies, you may well have fewer or less effective methods to get correction of the behaviour.”
Well thank you, Ken.
Bonnie and I were celebrating the fact that 10 years ago, on the 1st of November, she moved to New Zealand permanently. Amazing!
And next week, on the 8th of November, she is becoming a New Zealand citizen. There is a ceremony for this very thing happening on Wednesday evening of next week, so we’re excited about that.
To celebrate the fact that Bonnie had been here for 10 years, we went out to dinner to one of our favourite steakhouses.
I called an Uber, and I did my usual thing. I texted that I’m a blind person, and if the driver could look out for me and escort me to the vehicle, I would appreciate that.
I got the notification that said that the driver was nearby. And normally, when that happens, they’re in visual contact range.
And sure enough, soon after we got that notification, the driver cancelled. A pretty clear cut case of somebody seeing the dog Eclipse, the dog to eclipse all dogs, and deciding to cancel the trip.
So we got home. A really great driver, actually, the second one that we got allocated.
And then I filed a formal complaint. That’s going through the process. He’s being taken off the platform for a bit of reprogramming, you know. And if he offends a second time, then he’s off the platform permanently. That’s what they tell us happens anyway.
But as part of that process, I noticed something that is new. And I wonder whether this is the case everywhere that Uber operates, or whether this is something unique to our part of the world.
When you go into the accessibility section of Help in the Uber app, there’s now an option here that allows you to identify yourself as a service animal user. Uber says that this is optional.
And when you activate it, it reminds drivers once you request a trip that it is illegal for them to refuse a service animal, and that they also claim that it gives you access to priority support.
So I am interested to know. First, is this an option where you are, or is it something unique to us?
And second, if you’ve enabled this feature, has it been helpful? Have you noticed any kind of material difference to your Uber experience as a result of switching this thing on?
You can also call the listener line: 864-60-Mosen, 864-606-6736.
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“Hello, Jonathan,”, says Mel who’s writing in to say:
“I am new to listening to your podcast, and am finding it not only enjoyable to listen to, but also incredibly informative in a user-friendly way. I greatly appreciate the variety of topics and input from listeners.”
So glad that you’re with us, Mel. Welcome aboard.
“I am writing because my community has begun offering movies in the park several times throughout the summer months. As these are outdoor events, the city does not use the same technology as a movie theatre, which means that audio description is not currently available.
I have not had much success in trying to use a few apps that I typically use at home, in that the movies being shown are not available on the apps.
Are there free apps that you or others would recommend?
Thanks so much for the guidance.”
This is a good question, Mel.
I’m not aware of too many apps that are out there that offer a huge library of movies. It’s a pity because I think, this is such a good model. If you can sync your phone with whatever’s going on, then it’s a great way to get localised audio description.
And there have been one or two efforts. I think the only one that I’m aware of that’s actively developed now is the one from Comcast, which we don’t have access to in my part of the world.
So does anybody have any tips in terms of enjoying an event like this, or how to advocate for more movies to be added to some sort of app? Please do be in touch on this. opinion@LivingBlindfully.com, if you want to be in touch on this or any other topic. 864-60-Mosen is how you can be in touch on the phone. 8646066736. That number is in the United States.
Voice message: Hello to everyone in the Living Blindfully community. This is Claudia from Tampa, Florida, and I thought I would continue the fun trend of using voices to record our podcast contributions.
This is my personal voice that I created using iOS17.
I hope everyone is well.
I wanted to contribute to the topic of seeking jobs as a blind person. Unfortunately, I have been struggling with this for a long time now.
In the US, well, at least in Tampa, Florida, I have been very blessed and have not had any issues getting the services that I need.
The problem that I am having comes from employers discriminating against people who have disabilities.
However, their excuse for their discrimination is the fact that I don’t have any experience. But to be honest, this doesn’t really make sense to me, since I have a bachelor’s degree in information technology.
I haven’t even had any luck finding a job experience that is unpaid. But I am not giving up, and I hope to find something soon.
I also wanted to bring up another question that I have.
What exactly is the difference between Be My AI and the Envision glasses using Envision AI? I have never used Envision, so I am not 100% sure of all of its capabilities and would be interested in learning a little more about what it does.
Thank you and have a good day.
Jonathan: Good to hear from you, Claudia.
That personal voice thing is sort of interesting, isn’t it?
I do wish you nothing but the best of luck with your job hunt.
It is very difficult to break through sometimes. And I think, one of the biggest problems that we face are attitudinal barriers – people making assumptions that hold us back. It can be demoralising, and it’s difficult sometimes not to give up.
But as I always tell people, the one job you are certain not to get is the one that you don’t apply for.
So best of luck.
In terms of Be My AI versus Envision, Envision now does have a ChatGPT implementation. I have not used that because when I did the evaluation of the glasses all the way back some episodes ago now, that wasn’t available. But my understanding is it is quite similar to what you get through Be My AI.
One of the big advantages of having the glasses, of course, is that you can be hands-free. And we always seem to be having to carry something, or use our hand for guidance. You know, we’ve got a mobility aid of some kind – a guide dog harness, or a white cane in one hand. So you’re disadvantaged already if you have to hold a phone in the other hand. That’s all your hands gone. So having those glasses can be useful for that reason.
But I believe in terms of the actual technology, it’s very similar.
If anybody has used the chat GPT implementation of Envision, perhaps they can comment on that.
Wesley Martin’s writing in. He says:
First, I was totally unimpressed by the personal voice in iOS 17. Other than your accent, I wouldn’t have been able to recognize who was cloned.
ElevenLabs totally beats Apple in this regard, even with instant voice cloning.
Just to inform you and the listeners, the BrailleNote Touch Plus got a new update – adding a dictionary, and enhancing EasyReader Plus app.
I’m starting a podcast, and I’m using Audacity. I’ve tried a few others like Reaper and GoldWave, but I always return to Audacity. Thanks to Sean Priest and his demo on an early episode of the Blind Podmaker.
Do you or your listeners know if/how you can add podcast chapter markers in Audacity?”
I don’t know. I know how to do it in Reaper, but I’m not sure if it’s possible in Audacity.
So perhaps, somebody who does know can chime in and let us know.
He says: “I am using Buzzsprout as my host, which I find to be quite accessible. Their free plan offers 2 hours of upload time monthly, which meets my needs well.”
Buzzsprout are a great contributor to the podcasting community. They do a lot of how-to videos, which are great for people who want to start a podcast, and they seem to have quite good support.
One reason why I didn’t go with them is that they re-encode your audio. And nobody touches my audio, I’m afraid.
When you upload, they will re-encode it to 96 kbps, mono. And if you use music or any elements that use stereo, that is horrible. Horrible!
“Also,” says Wesley, “did Apple get anywhere with the inaccessible date picker in Podcast Connect?”
I’ve just checked, and no, there is no change there.
“I’d like to share a treasure I found with the listeners.”, says Wesley.
“in the old old archives of the Mystic Access podcast, there’s a recording of Jonathan narrating a story. I forget the full title, but it has something to do with a blind elf. Very cute and enjoyable.”
That’s a story that I wrote back in, was it 2014? Yeah, 2014, I think, called Louis the Blind Christmas Elf, and we have played it on this podcast as well. And it’s available on the Mosen.org website.
“As always,”, says Wesley, “love the show.”
Very glad to hear it. Thanks very much for writing in, and good luck with the podcast.
This email comes from Elijah Massey. He says:
Recently, I have been experimenting with different technologies that make it easier to hear voices in loud environments, especially after the discussion of the HeardThat app on the podcast.
I am completely blind, but I don’t have any hearing loss.
And in college, I have been becoming more social and recently trying to explore new ways of meeting people such as parties and things like that, which often involve loud environments. And beyond that, there are some other social situations like talking to friends at a restaurant and things like that.
Unfortunately, I haven’t found a perfect solution. But there are several good solutions that can help a lot.
First, the AirPods Pro 2 have an excellent transparency mode that lets you hear the environment as if you aren’t wearing headphones at all, and several very useful features that modify it, including some new ones in iOS 17.
I would divide them into 2 categories – those built in to the AirPods, and those that are under Headphone Accommodations. They have some overlap now. But the first group sounds way more natural, while the second group is more customisable and more intense, but distort the sound a little and make it harder to tell where sounds are coming from in the environment.
To customise the features built in to the AirPods, you can access the settings by activating the name of your AirPods at the top of the settings app.
And one of the most useful ones is Loud Sound Reduction, known as Adaptive Transparency before iOS 17. This lowers the volume of loud sounds in the environment while passing through other sounds such as conversation completely unchanged.
I have tested this in different environments including with loud music and a fire alarm. It sounds completely natural, even to the extent that when the fire alarm went off while I was wearing the headphones, I had no idea that the volume was being lowered until I took the earbuds off and heard how loud it was.
However, even though it lowers the volume quite a bit and it makes it a lot more bearable, the sound is still kind of loud so the effect is limited.
One of the new features in iOS 17 is Conversation Awareness. This is supposed to lower the volume of media and environmental sounds when you start talking, as well as pausing media after a while.
And this is very effective for media playback. But unfortunately, I haven’t noticed it changing the volume of my environment so far.
Next, Adaptive mode is probably the most significant feature with AirPods Pro introduced in iOS 17. It’s a separate mode in addition to transparency and noise cancellation and it blends both of them, depending on what is going on in your environment.
In a room with pretty quiet background noise like a fan, it acts just like transparency mode, and passes all the sound through.
When the background noise gets louder, such as a portable AC in the room or a bathroom sink turned on all the way, it always starts lowering the volume drastically to about the level of the fan noise, and it’s so natural that I can forget how loud the sound actually is.
It gets really impressive with sound at very high volumes like loud music. I tested the Adaptive mode at a pool party recently, and I was blown away by how effective it was. The volume of the music was lowered way more than it is with loud sound reduction, and I could literally stand close to the speaker where I felt strong vibrations through my body, but the sound was lowered to about the volume of a regular conversation, or even quieter.
The only problem is when it lowers the volume this much, it also lowers the volume of people’s voices. Usually, if someone close to me was talking to me, the volume of everything was lowered less and it also seemed to amplify the conversation somewhat in comparison with the music.
However, as I got closer to the music, it still became harder to hear conversations, and the Adaptive mode made it harder to figure out where people are around me because voices farther away were often made inaudible as the overall volume was lowered without these voices being amplified.
The second group of features is customised by opening settings, then going to Accessibility, then Audio and Visual, under Hearing, then Headphone Accommodations.
After turning on Headphone Accommodations, activate Custom Transparency mode, turn it on, and modify the settings on that page.
These settings can have very intense effects. And the ones that I find useful for hearing conversation in loud environments are Amplification, Ambient Noise Reduction, and Conversation Boost. With Amplification set to 100%, Ambient Noise Reduction set to 100% and Conversation Boost turned on, it strongly lowers the volume of background noise, strongly amplifies the rest of the sound, and also makes voices louder. It does make things sound less natural and doesn’t adjust to your environment, like the Adaptive mode does.
But the benefit is, you can get significantly more voice amplification with good background noise reduction.
I tested this at a pretty loud restaurant with friends where it’s significantly quieter than the party. But it can be hard to hear people talk sometimes, especially if they are a little farther away because of the music and a lot of people talking.
I definitely noticed that it made it easier to hear people’s voices including voices farther away, even though it wasn’t as much as I would wish. It even made VoiceOver on my Apple Watch noticeably louder in comparison to other sounds when I had my arm extended away from me.
A few downsides of this. It doesn’t work with the Adaptive mode, which might be an excellent combination to use. And these settings are not available on the Apple Watch, which prevented me from testing this at the pool party since I didn’t bring my iPhone.
One advantage of this over the Adaptive mode is that it’s better with voices that are farther away.
I also tested the Samsung Galaxy Buds 2 Pro, which have a pretty good transparency mode and some settings similar to the AirPods, but not as many. In the Galaxy Wearable app, which should be available on all Android devices, these are found under Earbud settings.
The first one is under Accessibility, and is called Amplify Ambient Sound. With this turned on, all sound is amplified but voices seem to be amplified to a higher degree and it is easier to hear them in louder environments.
I think this is less effective than the AirPods Pro headphone accommodations, but still very useful.
The second one is under Labs, then Hearing Enhancements, and is called Extra High Ambient Volume. This amplifies the sounds in your environment way more than the first setting.
And when I tested this, I did not find it at all useful for making conversations easier to hear, since the loud environmental sound was made way louder, and the voices were not separated in the sound in any way.
But maybe, this could be useful in trying to hear quieter sounds in very quiet environments, or for people with some hearing loss.
I also tested the HeardThat app, and I found it very impressive, but less good for some situations.
I tested it mostly with noise removal at 100%. And in a quieter restaurant, it did very well at amplifying the voices from people at my table and removing the background noise, except for a few artifacts every once in a while.
There was also a TV on in the background and sometimes, it would amplify the voices from that. But sometimes, it would not, which makes sense considering it’s trying to amplify voices, but the other background noise was almost gone.
However, I had more problems when I took it to the louder restaurant. It did pretty well with amplifying voices close to the phone and cutting out the background noise. Although there were more artifacts this time. But with people a few feet further away, it often missed their voices especially if they weren’t talking loudly.
So for someone or a few people talking around a table, and talking towards you, and loud enough, it seems to work extremely well. But with other situations, it’s less useful.
The all voices mode seemed pretty much the same in these respects to the directional mode. Although, I did notice some difference with people close to me.
I also tested this at home in a room with a fan on, talking to my smart speakers and it totally cut out the fan, as well as the sound effects from the smart speakers, but made the voices significantly louder even with a smart speaker on the other side of the room.
I was using an iPhone SE 2020, and there was a little latency, but not to the point where it was annoying.
After doing these experiments, it seems like there are some pretty good solutions. But the best solution will depend on the situation.
Hopefully, AI technologies will create even better solutions in the future. And I have another idea that hopefully will be possible in the soon”.
That’s a cool expression.
“When Be My AI or another AI model that can interpret images becomes capable of interpreting video, and when this AI gets incorporated into smart glasses, it should be possible to make it read lips and give me a transcript of what people are saying in real time. And also, describe the people around me and around the whole area.
This would definitely help at social events like parties, where beyond being able to hear people talking to me with loud music, a big problem I have is being able to find people to talk to and get their attention to start conversations, without nearly as much of the auditory information I can rely on in quieter environments.”
Thanks, Elijah. That’s a great email.
I am very intrigued by some of the cool stuff that Apple is doing in this space. There have been rumours that one day, Apple is going to enter the hearing aid market for real.
That would be very disruptive, and I look forward to that because as somebody who wears behind the ear hearing aids, what they’re doing with AirPods just don’t work for me. But if they got into the hearing aid business for real, it could be great.
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Jonathan: We’ve had a number of blindness-related memoirs and philosophies of blindness in recent times. And the one that started all this in recent memory is, of course, Leona Godin’s book, Their Plant Eyes. We had a great chat with Leona some time back.
More recently, Andrew Leland spoken with us.
Now, we’re talking with Selena Mills with a book called Life Unseen. Selena offers a UK perspective to this discussion, and of course her own unique experiences of going blind as well.
And Selena is a journalist, which means that this is a cracking read, as they say in the UK.
Welcome, Selena. It’s really great to talk with you.
Selena: [laughs] Well, thank you for having me.
Jonathan: I’ve done several interviews over the last few years with the blind authors doing these superb books that seek to tell the truth about blindness, and that seek to try and stop perpetuating the myths that sighted people like to convey. Why do you think that publishers are amplifying their voices now?
Selena: I think disability in general has got more attention in the last 10 years, particularly since the Paralympics. Suddenly, everyone realises that just because you’ve got a disability doesn’t mean you don’t have a heart, brain, and soul. I think blindness has, in particular, been coming into the light last 5 years.
I think there’s more access to information digitally, so you can read it easier. I could have done half the research I have done, probably about 10 years ago.
And also, I think there’s just a much more open look at the world and people having their own voices now.
I think blindness was put in a little corner of academia, sort of a little boutique section, and I think it’s coming out of the closet, which is great.
Jonathan: Yeah, I guess that’s a good way of looking at it.
The question is, though, does it change minds? I mean, do you think that your book will be able to cause people to think differently about blindness and therefore, change some of those myths that hold us back?
Selena: Well, I don’t believe that there’s gonna be an overnight shift.
Again, it’s sort of quite polarized thinking. Either you think like this, or you think like this.
I feel what you can do is shift the dial. And the more of us out there, the Andrew Leelans and Godins who are out there fighting and writing, the more that will be heard. So I aim to shift the dial.
I just want people to think a little bit more, I guess, in relationship to themselves. ’Cause at some point, blindness will be part of everybody’s lives because we’re all getting older, and our eyesight gets worse.
So at some point, your granny, mother, brother, whoever is going to get affected. And at some point, whether it’s accident, illness, war, from birth, you will know somebody.
And I think if we can change the dial just a little bit incrementally, a bit more, a bit more, I think we’re onto a winner.
Jonathan: Do you think that there is such a thing as a blind culture? Is there a blind community?
Selena: In the world, or in general?
Jonathan: Yeah, in general. I mean, for example, I have been convinced that a blind culture does exist. And I’ve always believed, as someone who’s been blind since birth, that a blind community exists.
That’s why we have this podcast, for example, where it’s a safe place where we can talk about our issues and kick some pretty interesting philosophy around.
But there are some people who just don’t believe that, that there is blind culture, or blind community as such.
Selena: Well, I think every group that feels isolated has a community, and people can join it or not. I wouldn’t want to presume on anybody.
Also, there are different experiences of blindness. Everyone has an individual experience to their blindness. Some people are going blind, some people are born at birth, some people get retinitis pygmyctosa. So I guess it depends which community you’re talking about.
So I think there are definitely, there’s a need, a human need to not be alone in one’s experience. And I would certainly go and look for it. I do look for it. I love it. I love being part of a group of people who understand what I’m talking about without having to explain it. But I would say that applies to most things.
I love classical music. I was singing in a choir.
So I guess I would say there’s a blind culture as there are other cultures, which is community. I would say communities, actually. There are communities.
Jonathan: And in terms of those experiences, tell me a bit about your own experience and the discovery that your sight was in fact, deteriorating.
Selena: Well, I’ve been blind in my right eye since birth. So I knew in a sense that it wasn’t all black and white, and dark and everything. It was just blind.
And then, my other eye had problems with it at birth, which they tried to fix, and they didn’t.
And then, it got really stable, and sort of my teens and twenties, I was okay.
And then, I came back from Rome where I was a correspondent for Reuters, and I just was a bit more blurry and a little bit more foggy. And I thought, “Hmm. Is this me being tired, or is this, you know, does this need looking after?”
So I went to see the specialist and he said, “Oh, you’ve got a growth at the back of your eye, and it’s right at the back of your eye. And you know, if anyone went in there, they’d hit your optic nerve.”
So it’s not just an easy, you know, when you get an attack sitting there, “Can’t they laser it?” And you’re like, “No, they can’t laser it.” [laughs]
So I have a growth that is growing, and it’s sort of like a cataract, but it’s got a little bit more fibrous, and it’s got tendrils. And the view is, at the moment, not to touch it.
And to be honest with you, there was a point where I would have been going around the world going, “Please find a cure, find a cure.”
And now, I’m actually much more at peace with it in my forties and fifties. I’m like, “Oh, okay. I’m okay. I still have a good life.”
I’ve got about 10% now, and it’s foggy.
What I tell sighted friends is, “Put your right hand over your right eye, put your left hand in front of your left eye, put it into a fist and imagine all the sight around that fist is kind of like Vaseline, and smeary, and a little bit blurry, and grey, and you’ve probably got about a sense of how I see.”
But I’ve had to transition into using a cane, touch typing, very bad learning of Braille but learning and getting there, and tech. So I’ve had to kind of cross the threshold a bit and come to terms with the fact that I am losing my sight.
And eventually, even if I have an operation, they don’t know how much sight I can gain because they don’t know how much my brain will actually understand that I have sight. Sometimes your brain doesn’t get it.
Jonathan: Well, that’s the perennial question for many people, isn’t it? If you were offered sight, would you take it back?
For some of us who’ve been blind since birth, it would be in fact, having sight for the first time.
And my argument has always been, “Well, you’ll get a lot of visual data that your brain really doesn’t know how to interpret. What does this data mean? You’d almost need to go through a sighted rehabilitation process.”
Selena: Well, yes. Have you read Oliver Sacks? I mean, he wrote about Virgil, a man in Illinois who has all his life been blind. He lost sight quite early on, like 2 or 3, lives a very good life, has a job, has a home, gets married.
And the girl comes home to him and says, “Darling, I found a doctor who said he really thinks you were misdiagnosed, and he can help you.”
So he goes to see the doctor, and the doctor does an operation, and he can see more.
But he absolutely collapses. He cannot cope with the overwhelming, you know. He’s known the world through touch and feeling. And suddenly, he’s getting all this visual data and his brain can’t cope.
And I won’t tell you the end of the story because it’s very sad.
Jonathan: It is very sad, yes. Yeah.
Selena: But it’s just a real lesson in like, not having to imagine that having sight is a fantasy. Sort of, you know, “Oh my God! You surely want that.”
Surely every sighted person I know tells me about a doctor they know.
And one man, I put this in my book, actually. There was this one guy who said, “Well, I know a really good doctor and you must go and see him.”
And I said, “Oh, thank you so much, but I’ve seen about 20. I’m okay.”
And he rang me up the next day and he said, “Well, you must want to go blind then because you will not go and see my doctor.”
And I was like, “No, I’m just happy with my life as it is. And I know the extent of what my life is, and what I can cope with.”
And he could not understand that I just was okay with my life not seeing. I’m at peace with my life, and I don’t want to impose it on anyone else. But I certainly don’t want to have other people’s view imposed on me.
And funnily enough, my husband wooed me, [laughs] not with flowers or chocolates, but with something called the Molyneux question, which is an 18th century philosophical dilemma.
So Dr. William Molyneux wrote to John Locke, the philosopher, and he said, “If a man born blind suddenly woke up from an operation or from magic and could see again, would he know the difference between a globe and a cube?”
So they were thinking about this in the 17th and 18th century.
And John Locke took 4 or 5 years to write back to him. It was quite a slow correspondence.
And he wrote back and he said, “My answer is no.”, because he’s not had the experience of the world through sight.
So I mean, I think it’s a dilemma that humans have wrestled with that is the world a better place simply because you have sight? I think it’s called ocular centricity.
Jonathan: Yes. And actually, at first sight was made into a movie.
And what really struck me about that movie was that it was the girlfriend that didn’t seem to be comfortable with him being blind, you know. And he did it for her more or less, you know. he wants to be acceptable to her.
And that was very sad that he was not accepted for who he was.
Selena: Exactly. And it’s very frustrating. I get that.
I’m very lucky that I married someone who just doesn’t impose any of his own madness on me in that way.
And in fact, when I said to him, “If I was offered an operation and they said they could cure me, what would you do?”
And he said, “It’s in your hand. It’s your life.” So thank God I have a really sane human being at my side.
But I find it very frustrating at least once a week, possibly twice, I get the, “Can’t you have it lasered? I know a doctor. My auntie had it.”
And then, no one says, “Oh, how’s it going? What do you think of technology?” …
I don’t know. You can have another conversation. I don’t have to be fixed.
Jonathan: What is it about you that has meant that you feel this way, though? Because there are people who have gone through what you have, or similar, and they spend the rest of their lives searching for a cure and believing that their life really isn’t worth living given their level of sight.
Selena: I think it’s to do with my upbringing. I mean, I had a very feisty Scottish mother.
As I was losing my sight when I was younger, my parents were like, “Right, get in the car.”
I’m like, “What? I can’t see.” [laughs]
And they were like, “No, you’re going to learn to drive. You’re going to learn to ski. You’re going to learn to play tennis. Even if you can’t see anything, we don’t care.”
I think that actually bizarrely, even though I found it has limits. I mean obviously, I should not be on the motorway or in a car anywhere. But I think they had this sort of belief that I was entitled to be in the world, however good or bad my sight was.
And it’s back to what you just said. It’s how others treat you that makes it so miserable. It’s not so much that you’ve lost your sight. And I think my parents made me quite strong in how I engage with the world.
I’m an adventurer. I mean, I just love going out and seeing the world whether I can see it or not.
Jonathan: As seems to be all too common, there seemed to be a bit of a disconnect between your eye care professional and being assured that a full life with blindness was possible.
How can we fix that? Because I think one of the big problems we face is initially that diagnosis, “I’m sorry, there’s no hope for you.”It’s pretty devastating.
And while there are some exceptions, it seems that the follow-on, the referral to those services that can help a blind person lead a good life often doesn’t happen, and people fall through the cracks and into misery.
Selena: I think that is such a good point, and no one helped.
I mean, I went to see this top top doctor and he literally said, “Right, well, that’s it. Boom.”
And then, he escorted me out.
I’m like, “What the hell are you going to do?”
Most people go, “Oh well, you can go to a charity.”
So in Britain, it’s RNIB. And I’m sure in America, it’s NFB.
So you have all these huge charitable organizations that, you know, can help to some degree. But it’s almost, … I feel that the medical notion of blindness versus the reality of living with it are very far removed. I mean, even the language that medical professionals use, it’s very hard to untangle. And you get all these sorts of Latin language.
I was reading a report about my eyesight, and God knows what it means. I mean, unless you’ve got somebody sitting there and explaining it to you.
So I think there’s a gap between the two – of living with it versus being diagnosed.
I think you’re right. There needs to be some sort of program where you can choose. You obviously don’t have to do it, but somewhere that you can start and learn and get your head around it.
Because it’s sort of like, … A friend of mine started a wheelchair training service, which is when you start using a wheelchair, you can go to him and he will teach you the basics, and you know, how to get up steps or whatever it is.
And I just feel like we have charities, we have weekends where you go away and bond with other people. But quite a lot of other people are quite traumatized as well.
So maybe, there’s some sort of middle way, which is it’s part of society. Again, it’s about I call it the boutique factor. So then you’re put in this special box, you introduce special weekends. And I don’t think we need that. I think we need it to be part of society so it’s completely normal if you don’t have sight, or hearing, or something where it’s part of everybody’s education. So maybe at school, they should have disability studies as absolutely mandatory so people grow up knowing it’s part of the human condition, rather than being sent away to some special program. I don’t know, I might be ranting a bit madly.
Jonathan: No, it does remind me of when my kids were little.
And sometimes, they’d come home and they’d say, “We’re doing blind people this week, Dad.”
And so we’re gonna take you to school as a real life exhibit ’cause we’re doing blind people.
Jonathan: [laughs] Yeah, so there’s a bit of that around.
You have had quite a variety of reactions from friends to your deteriorating sight as well. So in ways, it sounds like you’ve had to comfort some of them.
Selena: I mean, I’ve had really good friends who I’ve known for years. And I’ve had people go, “Well, you’re not really blind.”
“Okay. Well, what do you mean by that?”
“Well, you don’t need your cane.”
And it’s almost like it’s so hard for them to see me with a white cane.
So I’m going, “No no, it’s fine.”
And then, the other end is, “Oh, you’re faking it.” because I function quite well, and train guards and people saying, “Oh, you’re not really blind. You’re just getting free trips.”
Selena: And I took my false eye out on that one.
Jonathan: I mean, that was an extraordinary story. We shouldn’t underplay this because, I mean, you’re just trying to get on a train like everybody else, and somebody chooses to challenge whether you’re in fact, entitled to the pass that you have. Just extraordinary.
Selena: I know. I mean, I was very upset at the time. But I think in retrospect, I realised how sad it must be for him that he can’t imagine that a blind person could be free.
I was obviously, you know, nonchalantly walking down the station looking happy. And, you know, maybe I’m meant to look miserable with my arms stuck out like a Scooby-Doo. I don’t know. But I think I felt in retrospect, I feel sad that that’s how he imagined blindness to be, sort of completely incapacitating and mindless as well, like sort of just like not getting, malfunctioning.
And I think that happens more often than we realize. I think that people are judged on their blindness. You want to see the person, not the blindness, but I wish that was true.
I don’t think it’s as bad as it was. But I still think it’s them and us, and that’s really hard.
Jonathan: Well, I think as you mentioned in the book, people perceive blindness as an absolute total lack of vision, don’t they? And when somebody has a little bit of usable vision, to many people, that means you’re not blind. And if you’ve got a pass that says you are, you are faking it. So there’s a public education issue there.
Selena: But it also stems from the middle ages where people with cross eyes, or different colored eyes, or bad eyesight were often considered to be the devil.
So it’s not surprising that we have connected a bit of sight or a bit of dodgy eyesight with evil. And then we’ve kind of inherited that.
So I think that’s also what I’ve learned a lot is a lot of our reactions to blindness in the modern day are from very ancient instilled ideas of black and white, evil versus good, truth versus lies. I mean, Jews were not allowed into Christian areas because they were “blind to the truth”. So the word with itself was used as a sort of barrier to seeing truth.
So you’ve got all these things feeding into our daily, our language, our history, our perceptions of ourselves.
And I think that’s what really in a way, helped me a great deal was understanding it’s almost nobody’s fault because we can sit and wag our fingers and go look please don’t shoot me like that. We can do that, but we also need to learn why people think like that.
And it’s not just bad grumpy people. It’s that we inherited this huge cultural view of blindness as dark, bad, polarized, lies, death. It’s embedded in our culture.
Jonathan: What is your view then about the ableist language – the idea that using language around blindness as pejorative is deeply harmful because of the stereotypes that they enforce? “You’re nothing but a poor blind fool. People are blind to the truth.”
It extends well beyond blind people as well. “Pleas to politicians have fallen on deaf ears. House prices are crippling.”, and on and on it goes.
Should we seek to change that?
Selena: I probably would say not because again, it’s so ingrained in our language that we know what it means.
But I do think the changes towards blind people and blindness, the actual physical event and physical state can change. That would be different from the language. Yes, it does reinforce it in a negative way, but I don’t want to sort of police people’s language. I don’t think that’s helpful.
Jonathan: Why aren’t disabled people entitled to the same policing as people of racial diversity? Because there are certain things that we once said pertaining to race that you just can’t say anymore, and rightly so.
Selena: Yeah. I guess I think that’s a very deep and complicated conversation to have, possibly one that we can’t have in a short conversation.
But I think it’s definitely about the blind community saying what they want, so what we want. It’s nothing about us without us, isn’t it? And if that’s what the blind community in general, the majority wants, then that should be right. That would be a good thing to do.
But I don’t know if we can impose it. All we can do is shift the dial.
Jonathan: Yes, and encourage change for sure.
Selena: Yes, yes.
Jonathan: I don’t think there is a mechanism to impose it.
To give you an example, recently I lodged a complaint here in New Zealand with our Broadcasting Standards Authority because there was an interview with a politician where the term “I’m completely blind about what’s going on.” was used over and over again by a minister of the crown.
Now, that equates blindness with ignorance. And it’s really clear to me, as somebody who seeks to shift the needle and get jobs for a range of disabled people that when people are exposed to a lifetime of that language, it is profoundly harmful and consequential because there are employers listening to that. There are also future blind people listening to that.
And if they’re bombarded by a lifetime of words about blindness being synonymous with ineptitude and ignorance, that has to filter through to the way that we’re perceived and the degree to which we’re hired.
Selena: I think it has to come from the blind community. We have to empower ourselves in order to ask for the change. It must come from the grassroots.
It won’t come from the government.
There has to be some sort of challenge, maybe legal.
But I agree with you, totally. That particularly, if it’s used by senior leadership people in such a negative way, it reinforces the negative stereotypes.
Jonathan: Some people believe we should go the other way, and suggest that we should just abandon the word blind entirely, even though we had it first.
But it’s been hijacked by the sighted.
You’ve really owned the word blind, which is interesting because some people in your position would be quite adamant. “I am not blind, I am low vision.”, or “I’m vision impaired.”
What’s your take on that? Has the word blind just become so tarnished and so confusing that it’s not retrievable?
Selena: I thought about this a lot, actually.
I think the first thing to say is that everybody’s blindness is their own individual experience. So I would not wish to impose my understanding of my own blindness, or low vision, or partial sight on anybody. It’s definitely what I’ve gone through. People can label or own their own experience.
The second thing I’d say is that I always fantasized, you know, a hundred years from now, you know. Will we have the word blind? And I almost hope we don’t because I hope that it’s so normal that we are all part of this big human mess. You could be without sight, you could be without hearing. Whatever it is, that we don’t have specialist corner words.
I think the problem with blindness is that it has been misused. And now, nobody really understands. Is it just a label? Is it a damnation? What is it?
So I think in the future, yes. I think right now, we can’t. We’re still using it, and that’s why I owned it.
But also, because I was tired of explaining all the time. I mean, blind is a good shorthand. I can say, “Oh, I’ve got 10%,” “Oh, yes, I can see that leaf, but I can’t see your face.”. I got exhausted all the time going, “Excuse me.”
I remember my particular one is going to the airport and I go, “I’ve got my cane, I folded it up, put it in my back pocket.”. And I go to the check-in desk and I go, “Hello, can I check in please? I’m partially sighted.”
“I’ve been vision impaired.”
Okay. Finally, after a while, you’re like, “Okay, I’m blind.”
“Oh, okay. Where’s your cane?”
It’s just like, oh God!
So I think we’ll have to get there in the end. I think all of these questions are really important. I don’t think there are definitive answers at the moment, and I don’t like being absolute about it because then, you’ll be as absolute as others are, particularly the sighted world. So I think it’s definitely finding our way ahead by using different language, see how that feels.
I like stretching the elastic band of politics. And what I mean by that is like, you know, unless we had Emily Mankhurst stretching the band and saying we want, you know, women’s rights, we wouldn’t have got them.
So at some point, I think the blind community will have to stretch the elastic band and say we need this and we want this. But we have to be a group that has power and force to do so, and I think we have to empower ourselves.
Jonathan: Yeah, that’s an interesting phenomenon about the UK scene.
In the United States, there are a couple of consumer organizations that are well-established organizations of the blind, which do a lot of advocacy.
In the United Kingdom, there doesn’t seem to be quite the same dynamic that you have. The RNIB, for example, which is a provider and not an organization necessarily of blind people. They have science and leadership that are leading the discussion on some of these topics.
You’re going to start a revolution, Selena.
Selena: I do. I just think in this view, this whole lived experience thing is very important because otherwise, how do you know?
And I do worry about these huge charities not being led by blind and visually impaired people because it’s an imposition.
And the one I always love is that you go to a big charity, and they go, “Well, we have groups, and we have community. We have a, …” there’s a word for it, “something like a leader group, and we talk to people.”
“Well, lovely. But why aren’t we running it?”
And I do think it’s changing. It is changing.
Jonathan: It actually seems to be changing for the worst. I mean, there have been blind leaders in those organizations around the world.
Selena: I know. I started it, too.
Jonathan: And now, there are not, and it’s got very corporate.
It comes back to seeing blind people in these change agent roles. And one has to ask if these organizations providing services to blind people are not exhibiting absolute best behavior, being an exemplar, and showing blind leaders running the organization what moral authority do they possibly have to tell others to do the same in wider society? [laughs]
Selena: None. And that’s what’s so sad.
So for example, one of my favorite historical figures I found, I mean, other people found it too, but I put her in my book called, she’s called Elizabeth Gilbert or she was known as Bessie. So she’s kind of very active in 1850s, 1860s, and she starts a factory in London, and it’s run by blind people for blind people, and they keep the profit, and they have a pension pot, they have a musical society, they have a Braille library and all the money from the brooms and the baskets, okay, yes, ouch. But it’s all, it’s by blind people for blind people.
And the only sighted person in the room was at the door, who did a check of the products as they went out to be sold. And I, you know, and that you could argue is a sort of necessary item in a sort of industrial machine type thing.
But, you know, she was blind, she was educated.
I do think education and privilege, unfortunately, financial privilege give one much more freedom. And that’s why I’m quite hesitant to sort of, you know, rant too hard because I had a fantastic education, and I had a lot of financial support. So I’m definitely very very privileged.
So I don’t want to pretend that I know everything. But what I do know is that those that having education gave me great power and great freedom. And it taught me to teach myself.
And I think possibly, along with my crazy, wonderful parents was education. I don’t just mean books and university. I mean, the confidence to be out there because I have no problem going into a room and whacking my stick on everybody’s legs and talking to everybody. But that comes from having quite a lot of confidence.
And where do you get that from? Well, people believing in you, and people backing you, and people saying, “Yep, absolutely, you can do this.” And I don’t think there’s enough of that around.
Jonathan: Right. And some of that is personality trait that one inherits, and some people are just born a little bit more gregarious and a wee bit more able to tolerate rejection.
Jonathan: I mean, I go into a room and I think, “Well, what’s the worst that can happen, really?”
Jonathan: But a lot of people don’t think that way. So it comes back to questions of the human condition.
It is fascinating to me, just coming back a little bit to the points we were talking about with respect to language, that so many scientific people have become incredibly nervous about using the blind word around blind people. And they’ll tiptoe around it, and try and think of another word, and stumble over their words because they have formed a view that the word blind is actually an offensive term.
Selena: I disagree. I don’t agree with that because I think it’s actually because they’re terrified they’ll get it wrong.
So I’m away with some friends and there’s some new people in the house, and this woman comes on saying I see, and she’ll come, “Oh God, I’m so sorry.”
Jonathan: Yeah, yup.
Selena: And there’s a lot of anxiety around it.
But I think that’s to do with all disability, to be honest. I think everyone’s a bit nervous about disability in general. People don’t know what to say. And I think, again, that’s about trying to have the confidence to make people feel comfortable and say, “Look, please don’t prey at all. Of course it’s in our language. Why wouldn’t you say I see what you mean?”
Selena: But at the same time, when people get things wrong or presume things about me which I find slightly offensive like dragging me across the road when I really haven’t A, asked, or B, given permission to grab me, that I can say, “Gosh! Very kind, but no, thank you. I don’t need that.”
And that’s the issue. There’s a sort of people don’t quite know where to place themselves.
Should they help? Should they not help? Should they say something? Should they not say something?
And I think it’s understandably so. I sort of, I don’t feel angry about it. I just feel exhausted by it.
Jonathan: Yeah, and I agree with all of that.
But I’ve also experienced people using terms like unsighted, various other euphemisms.
Selena: Oh, severe sight impairment, I’ve heard. That’s a good one.
Jonathan: Right. Yes, because they’ve come to a view somewhere that in these “politically correct” days or “woke” days, or whatever, that the word “blind” is somehow wrong to use now.
Selena: I haven’t come across that so much.
I think blindness and racism also have been correlated. So maybe it comes from that a little bit. But I don’t know enough, or I haven’t had enough experience of it to feel, I haven’t felt other people’s anxiety about it other than particularly with the word “I see.” There’s a couple of other ones. But people are nervous.
Jonathan: “Did you watch TV last night?”, and those sorts of things
Selena: Yes, yes, exactly. And they get very nervous about that.
And I think one thing I find exhausting is that I’m always being put in the position of having to make other people comfortable.
Selena: So that’s the exhaustion, I think, for me. [laughs] It’s exhausting.
Jonathan: There are a lot of references to religion and blindness, and many religions believe we have to be cured.
Jonathan: And I was really pleased that you talked about this in your book because I’ve been stopped on the street by random people, saying, “Have you been saved?” And I say to them, “Well, you know, they haven’t found a hard drive big enough yet. Because I’ve got a lot of data. So no, I haven’t been saved yet.”
Jonathan: And people seem to think that somehow, I am not a worthy person unless my blindness is cured.
Selena: Well, I think that’s the enlightenment, actually, if you think about it. So the enlightenment comes… So we have the Bible, and we have medieval times where only very few things can cure you, miracles, nuns praying for you, and Jesus touching your eyes and possibly curing you.
And then, you get the enlightenment with all these doctors who discover the cure for a cataract, for example, the first big big… Even though there was in India and in Asia, there were a lot of people getting straws and sucking cataracts out.
In terms of operations, they’re done in 1728, is the first… William Chastleton in England, and there’s somebody else in France.
And you suddenly get the onus of responsibility to fix yourself.
And it’s very well documented that, sort of, people got cross with you if you didn’t go and fix yourself, even if you…
So kids were put in horrible stirrups, and horrible…
The Therese of Montparadis, the musician, we know that she was treated very badly because we’ve got her doctor’s notes, and she was… she had cuts, she had leeches, she had electrolysis on her eyes. They banged her head in plaster so her eyes pushed out, to see if that would hurt the nerve endings.
There was this huge shift to the personal responsibility issue.
And I think that is, there’s a hangover now, even now.
I get asked all the time, “Are you fixed? Can you get fixed? Can you have laser surgery?”
And then, here’s the worst one, which I find deeply annoying. “Have you got the latest app?” And you know, Be My Eyes and AI, which is amazing stuff. But what if you just don’t wanna use it, or you don’t want a dog?
So there’s almost this huge responsibility on the blind person to make their lives as sighted people feel that they should be. And that, I think, personally, I think it comes from the enlightenment.
I could be wrong, but it’s this idea that you catalog, you document, then you can understand targets. And your target is to fix yourself. And that, I find problematic.
Jonathan: So that was the only part of the book I strongly disagreed with, or didn’t really understand because if you’ve got access to technology that makes your life easier and simpler, and you’re more empowered, why would you just not use it?
Selena: Oh no, I didn’t say that. Actually, what I said was, I love it, I want it, but I want the choice to have it and I don’t want to be constantly told that if I don’t have it, I’m a bad blind person.
And I also said, and this is very important, who owns that technology?
So Braille was free for everybody to have, for example, and it was made by a blind person, and it was used by blind people, and it was very much sort of like the world, Tim Berners-Lee and the World Wide Web, it was free.
But some of these apps are not free, which means what? So only people can have them if they can pay 1,500 pounds to buy ZoomText at work? I mean, there seems to be something very wrong with that to me because what, you can take it away at any point you like?
So that would be my argument about apps. It’s not that the apps themselves are not good. I mean, they’re brilliant and make my life totally much better, and they read my mail for me, and read bottles for me, and all the rest of it. But if it’s owned by a company, and they then impose a charge on it. Or if you don’t have the app, you’re a bad, blindy girl, then I have a problem with it.
Jonathan: [laughs] Okay. Isn’t it true, though, that there are costs to putting these apps together?
And there’s technical support. Technically supporting blind people is quite high-maintenance.
So I wonder whether the answer to this very real dilemma is to say, “Look, there are actually ongoing costs.” Regardless of how much you earn, your discretionary income is going to be depleted for the privilege of being a blind person. And in a civilized society, that should be compensated for.
Selena: You know, I disagree. I think that if it’s something that allows blind people to live full accessible lives, that makes it equal and integrated into life, why should it be paid for other than by possibly a government?
But there’s enough money in the tech world to go round. And that’s my probably ranty, I’m sure someone will disagree with me and tell me off, but I guess my magic wand is that it’s free because then there’s no ownership issues.
Jonathan: But then, how does innovation continue?
You talk specifically about ZoomText. And obviously, JAWS is another big one run by blindness-specific entities in both cases.
And there has been a lot of innovation, a lot of intellectual property where blind people ourselves have really developed these products for ourselves.
But the people who do that, the geniuses who’ve made all that happen and opened up many employment avenues, they’ve got to put food on the table, too, right?
Selena: I know you’re right. I know you’re right. I guess it’s my fantasy magic wand because Braille was free, the World Wide Web was free. So I don’t understand. Can’t we have some essential basic technologies which are free?
And yes, people should make money from their inventions, etc. But it seems to me that some essentials like JAWS should be free. That’s my fantasy. I know it’s a fantasy, dreamy, dreamy thing.
Jonathan: And I guess the question is how are they made free? To me, every blind person who wants a screen reader so they can succeed in their work environment ought to have that paid for.
I completely agree with you that it should be free to the end user. And in fact, in Colombia of all places, the government there bought a site licence for JAWS and ZoomText, so every blind person who wants it has it.
Selena: There you go. I’m moving to Colombia.
Jonathan: Yeah, there you go. [laughs]
And that means that obviously, the developers of the technology continue to pay so that they can pay their staff and provide tech support, but it’s free to the end user.
Selena: Maybe that’s what I’m saying. I guess I hadn’t thought it through enough.
But I do get asked all the time about Be My Eyes or Seeing AI. And while I find it endlessly brilliantly helpful, I wish it was easily accessible for everybody. Because also, there’s the whole blind advantage thing as well. That’s the thing I like.
So audio description, for example. Sighted people now listen to films when they drive because they can just put audio description on, they don’t need to watch it. Or haptic technology, which really does change how you perceive your phone buzzing or whatever. So there’s blind advantage, and I kind of wonder how we can integrate technology that’s been created for blind people that then goes out and helps.
Jonathan: There are so many examples of this where accessibility benefits us all, all the way back to the typewriter, which was originally invented for a blind person. The 33 RPM record was originally invented for talking books and of course then albums, music albums.
Selena: Yes, yes. And you’ve talked to Matt Rubri, I think, haven’t you?
The reading machine was originally developed by Ray Kurzweil for a blind person, and it became the scanner that appears on many office desks.
There are just so many examples of accessibility…
Selena: And the AGA was invented by a blind Swedish man who was an engineer. He was making something, it blew up, and then he loved cooking.
I don’t know if you guys have AGAs. They’re big stoves, and they’re all over Scotland. [laughs]
Basically, they have 3 ovens, a very hot one, a middle hot one, and a low warming one. And they have 2 hobs, one very hot and one middle hot, and that’s it.
There are no buttons on it. There’s nothing to play with. It’s just hot, not hot, medium hot.
And he invented AGAs, and they’re all over the countryside because they can be fed by oil or wood. And that was invented by somebody who was blind.
So I guess the answer to your question is, you’re probably right in the world that we’re in that people should be able to make money from things. And that it doesn’t matter who makes it, as long as it’s good.
But I would say my fantasy is I wish everything like, you know, these big technological leaps could be free and accessible to all because everybody benefits and someone, the end user, gets it for free. But maybe the companies do some deal with the government or something, I don’t know. You’re completely right.
Jonathan: Let’s talk about journalism and how you, working in journalism might have changed over the years as a result of your change of vision. But also, of course, journalism is changing in terms of the way that it’s produced.
Have you been able to adapt your own methodology to your current level of sight loss?
Selena: I have. I touch type anyway. I taught myself to touch type. So I’m very fast.
2007, the iPhone comes out and that really was a game changer for me because I could get maps, talking maps, and you know, telling me where to go.
I found it so significantly helpful that I felt less dependent on other people, and that was really good.
I was trained to be a journalist with a notepad, and go out and interview people, and then come back and write the story.
That has changed, whether blind or not, where people pick up the phone or do a lot of research online.
I don’t like it. I do love interviewing people face-to-face or over the phone.
But I think in terms of the kind of things I write, which is sort of features and articles, big, long articles, it hasn’t changed too much in terms of you have to write well, concisely, efficiently, accurately.
But in terms of technology, my life has completely changed. In my first real job at Reuters and then the Daily Telegraph, the screens were so tiny, I couldn’t see them anyway ’cause my eyesight was deteriorating. And I used to make terrible mistakes. I worked on a city page and once put a stock at, you know, 20 million instead of 20 billion and everyone terrifiedly thought, “Oh, the market was crashing.”
So I really appreciate that the screens are changing, or can be read. They can have a screen reader. And text to speech, speech to text, I love it. Oh, love it.
Jonathan: So are you using JAWS when you’re writing your articles?
Selena: At the moment, not, but I am doing, what’s it called? Dragon? It is one that talks to me.
Jonathan: Mm-hmm, right.
Selena: Which is quite good. I type, it talks back at me.
Jonathan: Now I’m hoping you can help me out. I’m glad you covered this in your book.
As someone who has been born blind, I’ve often been asked the question, “Do you see black?” And I really don’t know how to answer that because I’ve never seen, my eyes just don’t work at all.
Selena: No, I completely agree with that.
Jonathan: [laughs] Yeah. So, I mean, how does one answer that question? It sounds like there is a difference between seeing black and just your eyes not working.
Selena: So at the beginning of the book, the first thing I say to the reader is, “Close your eyes if you’re not blind. Imagine what you think blindness is.
Now, open them.”
Okay. And then, you say well actually, what you’ve just experienced is not blindness. That’s just closing your eyes. And that means you’re turning off light or you’re removing light from your iris and your eyesight and your optic nerve.
But on my blind eye, I don’t see black. I absolutely don’t. It’s just nothing. It’s just nothing.
So I think the answer to your question, to if anyone asks you, is like no, don’t see black ’cause you don’t.
Jonathan: Because when I say that, people say, “Well, if you’re seeing nothing, you’re seeing black.”
Selena: No. There is an absence of light, but it doesn’t mean it’s black.
And I think it’s a sighted imposition onto blindness.
Jonathan: Right. And I’m not in the position to make any kind of qualified comment on this. I find that interesting.
Selena: No, you can take it from Selena Mills, definitely.
Jonathan: I’ll tell them. I’ll send them to you. That’s what I’ll do.
Selena: But wait, I’ll beat them up for you.
Jonathan: Good on you.
Now, I did wanna talk about unique UK conditions because I am the chief executive of an agency that seeks to help disabled people of all kinds find work. And you’ve got some interesting dynamics in the UK.
I know that right around the world, there are disabled people in all sorts of leadership roles. And they have been for many generations. They’re often not heard about or publicized.
But what I’m interested in is what I call those change-maker roles where they’re very visible.
And I can immediately think of Gary O’Donoghue, who’s a friend of mine. He’s on the BBC, and he beams into people’s living rooms and people know him. He’s a household name.
And of course, David Blunkett, who is a former Home Secretary, totally blind and reading Braille in the House of Commons, leading the UK through the 9/11 response, which was an incredibly difficult time.
And I wonder whether having a number of blind people in those key, very visible change agent roles has changed perceptions of blindness in the general population so that it’s maybe easier for the next generation, or do people somehow just see those blind people as freaks and anomalies, and not typical of blind people?
Selena: I think there should be more. I certainly don’t think there’s enough people in change-maker roles. And the 2 you cited are very good ones.
Where are the women? Where are the blind women, please?
Selena: It also depends on the job you have. So being Home Secretary or being political correspondent in Washington are very visible roles. It would be good, I personally think, to have more blind men and women in roles which are leadership roles, but not necessarily in the media’s eye.
So you go to work and you go, “Oh yeah, my boss is blind.” And you don’t think about it, you just go, “Yeah, there it is.”
And I think that would be really good if we could shift the change. I think there are a few entities in Britain who are trying to change it.
There’s something called the Business Disability Rights Forum, and they do have leadership training for disabled people to try and get up the ladder higher because you can get entry-level jobs, you can get middle-ranking jobs, but it’s very hard to get the top leadership roles. And you’re constantly put in the charity sector which is really annoying because why should you just only be good for blind charities? There are other places that your brain and your knowledge could be very useful.
Jonathan: And what happens though, I hope, is that people’s responses change. So if David Blunkett is in that visible role and Gary O’Donoghue’s in that visible role, and there are others actually in the UK who are in quite visible roles, that when a blind person seeks any kind of role, whether it’s that visible or not, we know that the biggest barrier we face is other people’s attitudes.
And what I’m hoping is that a decision maker, be they voters or individual employers, will look at somebody coming through and say, “I know it can be done because I’ve seen it done already.”
Selena: Yes. There’s only one word for that. I agree with you.
And there’s a guy called Neil Heslop who runs a massive charity bank, and he quietly gets on with it.
Selena: And there’s Robin Miller who is a radio producer. is a music producer, sorry.
And I mean, so and I know I’m just listing men. There are some women out there. I just don’t know them personally. It would be good to know that it’s there, and you can keep doing it. And it’s not, as you say, anomaly, ’cause if the anomaly turns into inspiration porn, …
Selena: “Oh, that’s so amazing.”
“Well now, I’m just doing my job, and I’m doing it really well because I’m good at this.”, and I think that would be a lovely place to be. I reckon we’ve got another 50 to 100 years, though, to get there.
Jonathan: How about the audio version of your book? Do you narrate that?
Selena: I did. It took me 2 and a half weeks.
Jonathan: How did you do it?
Selena: I had it blown up into 25 fonts. And I also learnt chunks by heart. Because I took a long time to write it, I knew a lot of it by heart, actually. So I read it to myself in a booth. [laughs]
Jonathan: That’s really good because I think with memoirs like this, it always kind of resonates when you’ve got the author actually narrating the audiobook. So that’s worth listening to.
Selena: I never know what to call it. Is it a memoir? I think it’s a memoir, history, and a little bit of a rant. So it’s a little bit of a manifesto, I think, too.
Jonathan: Yeah, there’s a kind of a formula emerging here. It first came to my attention anyway in Leona’s book. And then, Andrew Leland has also done this to some degree, where there’s a little mixture of history, philosophy, and a lot of personal anecdote, and it all gels very well.
Selena: Well, I think what we’re doing is showing that our lived experience is connected very much to the past and to cultural norms. And the more we recognise it, the more we understand it, the more we acknowledge it, the more likely it is to change.
And I would say the 20th century has been very much about biography, owning blindness. But it has been very weighted down on either the memoirs, so the Helen Keller Chipper thing, which is kind of annoying. even though I think she’s a very brave lady, but I think it was too chipper.
And interestingly, her publisher said to her, … She wrote to them and said, “Oh, I want to write about apartheid in South Africa.” And they were like, “No, blindness sells.”
So there is something about blindness that people find a sort of fantasy, intrigue, a voyeurism in it.
And I was actually saying this to somebody the other day, that one of my worries about my book is that I’m tapping into that fantasy where people want to know, they’re buying it and reading it because I’m actually tapping into the very thing I’m trying to pull apart.
So it’s quite difficult. Blindness is a really interesting subject because it touches so much of everybody’s lives.
Jonathan: Yeah. There’s the child version of Helen Keller where Anne Sullivan Macy is the great hero, and Helen Keller’s the beneficiary.
And actually when you dig deeper, what you find is an incredibly powerful, articulate, passionate political activist that few people talk about.
Selena: Yes, exactly. And she was on the FBI’s watch list.
And she wrote to the students in Nazi Germany and said, “Do not burn the books.”
I mean, she was a very pro-women’s rights and a communist. And we don’t hear that. We hear other things, but we don’t hear that.
And it turns out that’s true of quite a few women, blind women writers and thinkers. And they’re sort of turned into these icons of resilience and bravery.
But actually, what if they’re not? What if they actually, I mean, what if they’re, what, do they have nice love lives? Do they cook? What do they cook? Do they make risotto? What do they do? [laughs] I often want to feel or learn about blindness in a sort of ordinary sense.
And I think a lot of my research was looking at quite boring things. And that was actually quite helpful, in a way.
Jonathan: It’s a great read. I loved it. And I just love the kind of gutsy, straight from the hip attitude in the book. It’s really really good.
And I’m hoping that it will cause people to think.
I think that it will also be something that resonates with many of this audience, who typically are blind, who will read this.
Do you hope also that it might provide (and I know you don’t want inspiration porn), and so I’m careful about asking the question. But do you think it might also be of assistance to people who are experiencing vision loss and maybe don’t have the tenacity or the privilege that you have, that actually, on the other side, a fulfilling life is possible?
Selena: I hope to give courage.
I think I was trying to give myself courage. I mean, it’s very easy to do an interview and sound like a person who’s blind, buoyant, courageous, and confident.
I definitely had bad days. I’ve definitely been very very frightened crossing the road. I’ve gone on the London Tube and actually just stood with my wall, the wall behind me shaking with fear.
So I did it for myself, in a way, as a sort of therapeutic way of helping myself gain courage.
But I hope it does give anyone who’s going through any kind of sight loss, whether it’s small or large, that it just helps you understand that the world has attributed so much negativity and difficulty around blindness. And a lot of that is nothing to do with your journey. Your journey is about practical, getting through it, coping with it, but it’s not about other people’s hangups.
And maybe that’s what I want to leave people with is a bit of courage and saying, “It’s gonna be okay. It’ll take time and it’s difficult. It’s not like this magical journey.” You wake up and go, “Oh my goodness, I’m blind and I’m fine.”
But you might wake up, you might wake up and say, “Okay, this woman went through it, and she went through it and it took her 10 years to lose her sight.” But she did it very slowly, and with a lot of falling over, and a lot of putting your fingers in places that they shouldn’t go, like, you know, sockets. As I was telling you, into kitchen drawers and cussing myself.
But it’s still okay. It’s still okay.
It’s not too inspirational, I hope. I’d hope it’s just a bit of a nugget of courage.
Jonathan: I hope that you never lose that zest and that sort of sassiness that’s conveyed in the book.
It’s a great contribution to the narrative, and it’s been great to talk with you.
Selena: Thank you so much.
Jonathan: Thank you so much.
Selena: I’m really honored because I think I did write it for myself, but I also wrote it so blind people could own their own history. I don’t want another boring book about blindness by a very inspired sighted person, thank you very much.
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Right. My podcast work is done, so I’m going to go back and listen to Now and Then several thousand more times.
Thank you very much for your contributions. Look forward to getting more of them.
And remember that when you’re out there with your white cane, you’ve harnessed success. And with your cane, you’re able.
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