Podcast Transcript, Mosen At Large episode 141, staying in step with a cane, is blindness your dominant culture, weird iOS mispronunciations and more
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Jonathan Mosen: I’m Jonathan Mosen. This is Mosen At Large, the show that’s got the blind community talking. Today, staying in step with a cane. Shermeen Khan, a Canadian of Pakistani descent, says she’s more blind than brown. Weird pronunciation issues from iOS text-to-speech, space invaders, and more.
Speakers: Mosen At Large podcast.
Shawn: Good afternoon, this is Shawn. I just wanted to point out a couple of things. First of all, I am not experiencing the bug of being unable to change the main voice-over voice on my iPhone 10R, running 14.7. I’m finding more bugs are phones specific with iOS now than they used to be. However, it’s important that people take this update anyway. If you want more information about the WiFi bug in detail, you can listen to the security now episode that was recorded on July 20th of 2021.
The reason this is important is because, first of all, people were saying, “Hey, if you want better WiFi performance, all you have to do is change your name to this funky thing.” Which actually causes iOS to crash. The problem is that it isn’t even necessary to connect to it. If the phone simply tries to parse this as one of the available wireless networks, then it can cause issues with the user not doing anything. It’s what they call a zero-click exploit. It can bite you even if you’ve taken no untoward action whatsoever.
It’s really important that people update to this one because if a neighbor has been fooled by this WiFi thing to think they’re going to get better performance, what they could end up doing is causing your phone to crash inadvertently. The alternate voice for the Echo, and I’m going to do what my partner and I do and refer to her as Lexi, so that she doesn’t come up, but if you switched to the alternate voice, which I could swear as called Matthew, although I could see why they might not want to use that as a keyword because it’s a common enough name.
Anyway, unfortunately, he will not read Kindle books. If you ask for a Kindle book to be read, the normal Lexi voice will be used instead, so this new voice only applies to queries. I was really, unfortunately, sad about this because I don’t find the experience of having Lexi read a book to me very enjoyable, especially if the book has gay male characters. I’ve heard this voice read, and I was really hoping that it would be an option. Unfortunately, it is not, so I wanted to make people aware of that. To me, it’s a situation of, she sounds too much like a person, and it just doesn’t work for me.
I wanted people to know that that’s what will happen, and if I can find a way to pass that feedback along to Amazon, I will do that because– If you ask change voice when the Kindle book is reading, the query voice will change, but again, the text reading voice does not.
Jonathan: Thank you for that very informative contribution, Shawn. Hopefully, Amazon will take care of that at some point, and we will be able to have the male voice read the Kindle books. The expansion on the WiFi issue is very helpful, so thank you. Since the last episode, and since Shawn sent that message, in fact, there is another iOS 14 update. This is 14.7.1. There’s another security vulnerability that is fixed, so you will want to update. Also, it does fix the bug that was introduced to iOS 14.7, pertaining to the Apple Watch not being unlocked with Touch ID or Face ID. A good update to get all around if you haven’t done so already.
Back to Echo things. “Hello there, Jonathan.” Says Rachel Usher, “I hope you’re well, and thank you for the fantastic work you continue to do producing such enjoyable and informative podcasts each week.” Well, thank you for listening, Rachel. There’d be no point if people didn’t listen. “I was really excited,” she says, “to hear that the Amazon Echo has a new voice. Yes, I do like Ziggy.” With a smiling face.
“I have the Amazon Echo Dot, fourth-gen, the one shaped like a ball, I tried giving her the same change of voice command you did, and she just keeps responding, ‘Sorry, I don’t know that one.’ Her words. Is there something I’m missing? Do I need to go into the app and alter anything, or will this only work with certain devices and/or in select countries? I’m in the UK.”
That is it. Unfortunately, Rachel, it looks like there is no alternative UK voice on the Soup Drinker in the United Kingdom. I hope that one will come. I presume the same is true in New Zealand as well. I use the US voice because really, the Echo is just so much more capable when you set it to that mode, but this does seem to be a US-only thing for now. As Will Lomas, in the UK, also pointed out to me. Hopefully, we’ll see something new on that front soon. Off to Guernsey we go, and Pete says, “Hi, I thought I’d drop you a quick message in response to a contribution from someone regarding cane skills. Forgive me, I regret I didn’t catch their name.”
That was Marissa, who was asking about this. “Living in Guernsey, we have limited access to mobility training due to the small number of blind people here. We need to bring someone over from the UK mainland, periodically, to do this. The pandemic has clearly stopped that over the last 18 months. I have only had a very short session of training back in 2016, when I started to struggle to avoid obstacles, and beyond that, have not had the opportunity to do anymore. I had to work on this myself, as a result, and walking in step was one of the bits I found hardest. I’d suggest practicing somewhere safe, which you know well. I’m lucky enough to have a garden big enough to do this.
When I started, I was told to make a [unintelligible 00:06:24].” I’m sorry, I can’t work out what that should be. “Starting with my lead leg forward, and the cane away from it. As I started to walk, I’d get into the habit of swinging the cane as my back foot came forward. I did and still do frequently get out of step. Especially when my cane gets caught in the crack in the pavement.” He thoughtfully puts in parentheses, sidewalk, US listeners. “I just take a step to get back in sync. My somewhat lengthy point here is that it will just come with practice, and you will get out of step fairly often, but you will quickly get back in and it will become automatic sooner or later.
Lastly, forgive any typos I have left here. I am trying to improve my six key typing on my shiny new brilliant BI 40X, mainly as a newbie braillist, I think it’s a good way to get UEB contractions into my head. Possibly a daft idea, but the much smaller footprint of Braille keyboards, like the Orbit Writer, and small displays like the Orbit Reader, which I also own, make them much more portable. As I cannot get used to Braille screen input, I like to have a device like that with me for quick email and text messages. Thanks again for a great show.” Well, thank you for your hints, Pete. I hope they help Marissa.
While we’re on that subject, this email is from Lindy, who says, “Hello, Jonathan, thank you for your podcast. I often get a lot from it. As a way of giving back, I heard the latest podcast and Marissa talked about her white cane technique. When I first learned, 20 years ago, I had an excellent mobility instructor, and he told me to think, as I stepped forward with one foot, that I’m kicking the cane across to the opposite side. Once I got this into my head, I have no further trouble. I hope this helpsMarissa.” Thank you very much, Lindy. That’s an interesting way to think about it. I hadn’t thought about it that way before. Quite a cool concept.
Nora Nagel writes, “Regarding the person that contacted you regarding cane technique, there could be many explanations for her difficulty. Here in the US, the leading cause of pediatric blindness is cortical visual impairment, or CVI. She mentioned also having an intellectual or brain-based disability as well. People with CVI can present a complex picture. One possible explanation for her difficulty is dyspraxia, a neurological condition which can affect gross motor planning and coordination. She needs a mobility instructor who has a good understanding of all of her needs, and they can develop mobility skills that work for her.”
She says, “Never prioritize form over function.”
Speaker 2: What’s on your mind? Send an email with a recording of your voice, or just write it down, firstname.lastname@example.org. That’s J-O-N-A-T-H-A-N@mushroomfm.com. Or phone our listener line. The number, in the United States, is 864-60 Mosen. That’s 864-606-6736.
Jonathan: More feedback inspired by the Serotek interview. Kelby Karlson says, “I won’t extensively defend the specific term ghetto as applied to blindness, but I think it captures a real phenomenon. Specifically, the kind of isolation from the sighted world that many circumstances surrounding blindness can cause. This is not limited exclusively to technology. For example, schools for the blind kept blind people isolated from the general population, even if doing so was perhaps necessary and even beneficial at one time.
Having technology that was always behind the times, also could make it difficult to interface with sighted people, though this varied depending on the sort of technology we are talking about. On the other hand, sometimes being isolated in this way can have unexpected benefits. Much of Black people’s isolation, as bad as it was, led to the development of the blues. Blind people’s technical isolation led them to adopt technology such as eBooks that have now become ubiquitous. As for blindness products, undoubtedly, they are still helpful in many contexts, but I think it is ideal both to reduce costs and isolation, to interface the mainstream products wherever possible.
For example, having an iPhone and a laptop connected to a Braille display is, at this point, just as efficient as having a notetaker. Going with that equipment can reduce costs as much by two thirds. Not insignificant for anyone, but especially those whose cost of living is high. An area that is talked about least, and where isolation is not beneficial at all, is isolation on account of transportation. Even in many big cities, and certainly many rural areas, getting around is extremely challenging. Busing can often take much longer when it is available.
Governmentally provided transportation, due to its wait time can be just as long, if not longer, and can be almost as expensive as a taxi. If you want to take a taxi or Uber, you could end up paying $50 a trip, or more, depending on length of drive. This makes getting around much more difficult and expensive for blind people, and when you can’t travel, you are, by definition, more isolated. While sometimes transportation is subsidized by rehab agencies when you are looking for work, most of the time, once you have a job, you are on your own.
I am not saying that blind people only have things to moan and complain about. In the last century and even since the last couple of decades, our position has improved by leaps and bounds. I am, however, not sure if this problem is fully solvable. We will probably always need sighted help, or at least accommodations for some things. For example, we have been doing many renovations on our house and there are many projects I simply can’t help with. Such as laying floor tiles and installing window units. This email doesn’t come with any solutions, but I thought I would point out that the blind separation problem really does exist.”
Thank you, Kelby, for putting the great John Lennon song, Isolation, in my head. Anyone who hasn’t heard it, check it out. It’s on the Plastic Ono Band album. Oh, it’s a very good song, that Isolation song. I don’t know if I would use the term isolation to define this collection of issues that you were discussing, but I understand where you’re coming from with this.
It’s important to note that if we go back to the keynote XL days in the 1980s, and of course, the Braille ‘n Speak that were around at the same time, isn’t it great to think that blind people were managing appointments, and reading books, and doing a whole bunch of things well before sighted people were generally doing those things, and on devices that were much more portable? It’s another example of where we showed leadership. We led the way, and then this technology went mainstream, and there were so many good examples of that.
I agree with you that connecting a laptop to a Braille display will give you a great experience. Of course, the Braille display will hopefully last a few years, and you can swap the laptop out and upgrade your computing power. That said, there are also advantages in having a portable device, like the ElBraille, where there’s no screen, the battery life is longer, it’s all one unit, and some people want to work in contracted Braille. Particularly those people who are proficient in contracted Braille. It is hard for the notetakers to keep up. I made a bold statement about that back in 2006, when I left HumanWare to work with Freedom Scientific.
One of the reasons why I did that was because it was really important to me that people who were buying these devices, or being given funding for these devices, have them do as much as possible. Unfortunately, the BrailleNote, certainly in those days, didn’t have a software development kit. I had this idea back then that the BrailleNote could be essentially what the App Store eventually became. That if HumanWare had written a software development kit, then you could have had third-party apps really expanding the reach of the BrailleNote. This was my big vision for the device. A community-centric approach that created an ecosystem around the BrailleNote.
Unfortunately, I couldn’t get the buy-in. I couldn’t get the company to invest in that. It was clear to me that in terms of the things you could do, the actual tasks you could perform, the PAC Mate was increasingly going to eat the BrailleNote’s lunch, and so it was. Yes, I agree. You’ve got to keep up with the times, you’ve got to evolve, but the market will take care of these things if the market is functioning well. One of the problems I do think we have is good quality training being available to everybody who needs it, so that people gain some proficiency and some confidence in some of the new technologies.
People who struggle with this technology, for whom it doesn’t come naturally, just want to get stuff done. They’re not all going to geek out, like I like to geek out. They just want to turn it on and have it go. That’s where, for some people, the notetaker product still shine. We won’t get there, we won’t get past that until mainstream companies like Apple lift their game. I don’t think that anybody could seriously suggest that over the last few years, there haven’t been significant bugs in iOS Braille, for example. Where if you are a proficient Braille user with a notetaker, you can’t honestly say you are getting an equivalent experience with the iPhone and a Braille display, particularly for input.
I tend to focus on iOS because I’m an iOS user. I’ve invested heavily in that ecosystem, but Android is worse. Braille on Android is worse. Especially for input. I don’t think this is necessarily an isolation thing, I think it’s more an of necessity thing, if you just need to get things done. I have to say, I have enjoyed using the built-in applications on my Mantis more than I expected to because it does just work. This is one of the dangers that we have. That if we allow mainstream companies to subsume everything else, then we’re the bottom of the heap. We’re often the last thing that people think about. Software releases get updated with significant bugs.
We saw recently, that Microsoft didn’t mention accessibility very much at all for some days after the Windows 11 announcement. Apparently, it’s okay to announce Windows 11 for everybody else, but not the accessibility features for disabled people. I think we’ve got a way to go. What you’re describing is a nice utopia. I think we should be aiming for it. When we’ve got there, I suspect that the notetaker devices will die a natural death. For that to happen, I do appreciate it is critical for those making the purchasing decisions to make intelligent, informed purchasing decisions.
The reverse is also true, of course. It could be that there are some who are denied a specialist blindness product, who genuinely would be better off with it because people think that mainstream companies have solved all the problems, and they clearly have not yet. Regarding transportation, that is a real issue, isn’t it? It can make you feel isolated. I hope that as the social model of disability becomes more prominent around the world, that we will see this change.
I’m not holding out New Zealand as some sort of utopia, bastion of good quality disability public policy by any means, but one of the things we do have is a subsidized taxi scheme, where you get 50% off any of your taxi trips as a disabled person. There is some work being done now on seeing whether that might be increased further. During the pandemic, taxi travel was free, and it really gave disabled people in this country a taste of what it’s like not to have those restrictions.
There is a petition that has gone to parliament now, and some discussion going on about whether disabled people here might have access to fully subsidized public transport, which I think would be quite a revolution. The social model of disability would suggest that if there are disabling impediments, barriers that are removable, then society has an obligation to remove them.
Regarding your last point, I unashamedly confess that I am not a handyman. I’m just not good at that stuff. I mentioned this to Bonnie when we were dating, [laughs] and she said she didn’t care. As long as I could fix her technology, she’d keep me around. That’s okay. That’s the contract that we have, but there are a lot of blind handy people around. One of the coolest shows that I put to air when I was director of ACB Radio, was a show that was put together by someone called Phil Parr, who sadly died some years ago, called the Blind Handyman Show. Even now, people talk to me with fondness about that show because it was incredible.
The tasks that you talk about are not off-limits for a blind person, but I think of this handyperson-type area as a bit like cooking. Sighted people do learn by watching handypeople and people who cook. They absorb what’s going on, and there are often pretty pictures. Unless you have a natural aptitude for this stuff. I think I have a natural aptitude for technology. I can get a piece of technology, usually, and make it go. Some blind people are like this in their handyman/handyperson arena as well. They just know how to do this stuff intuitively.
Unless that’s you, and I think that’s quite a rare phenomenon in the blind community, then you probably do need to be shown more hands-on than would be the case if you were sighted. I think it does come back to that phrase that the NFB used to say. You’ve got to have the proper training and opportunity. I think that’s more a training issue, rather than an isolation issue. You’ve raised some really good points, and I look forward to others’ thoughts on them.
Mike Calvo has been back in touch, and he says, “In response to the feedback concerning my use of the term blind ghetto, it seems that the symbolism may have been lost in the backlash against the label. I never sought to criticize people for their choice of technology, nor have I ever used that term to direct someone to buy a product we have produced at any company. Rather, I slammed traditional assistive technology vendors for continuing to sell outrageously priced and grossly outdated technology and calling it innovation. The label pointed to a state of limitation to many of us blind people.
If the mainstream at large criticize Apple and Google for releasing devices that do not meet the market’s expectations, surely, the blind community, and I, as a card-carrying member of it, is within its right to criticize assistive technology that is not keeping pace with modern specs. Either we are consumers with equal buying power, or we are someone else’s means to an end. Seeing as how the current trend is venture capitalists seizing traditional IT vendors and not benevolent non-profits, I think you all know where I stand.
The label is not as relevant as the message. If blind ghetto is too obscene, we’re content to retire the term and either use something more suitable, pick your choice, but understand, the longer we let these overpriced relics hold down the market, the longer our potential will be decided by someone else. This is my, Mike Calvo’s opinion and point of view.” Thanks for sending that in, Mike. I still have some disagreement with some of the things you’ve said there, but I won’t belabour the point because I think I’ve said all I have to say on this.
I would say this, I’m glad that you’re going to retire the term because as you can hear, many people do find it offensive. I would also make the following point to our community. That is, that just because somebody is running a company, it doesn’t mean that they’re not entitled to a personal view in their own time. If Mike Calvo, the individual, has this view that you don’t necessarily agree with, that doesn’t mean that it is the policy of Pneuma Solutions, or in the past, Serotek. Now, I don’t recall, actually, whether the term blind ghetto product was ever used on a Serotek blog. If that was ever done, then I think we’re in different territory there.
Again, Pneuma Solutions is a new company. I’m glad that the feedback has been taken on board. That actually it is a really unhelpful and quite offensive term, and as Mike said in the interview, he said it was meant to be offensive. It sure is, clearly. It sure is. Moving on with Mike’s Pneuma Solutions hat on, he is responding to concerns that Roberto Perez expressed in last week’s episode, about the Scribe range of products. If you missed those comments from Roberto, they were very thoughtful, and thought provoking. They are in episode 140. You can check out the podcast or the transcript.
Obviously, when we have an issue like this, we’re always delighted to give any company a right of reply. Mike, in a Pneuma Solutions capacity says, “Thank you for asking us about the current limitations of our document remediation technology. We understand and appreciate your concerns. You’re right about the current scope of what our technology can do automatically. Specifically, OCR, image descriptions, and adding structural tags. In that sense, the current results that we can deliver automatically are equivalent, and sometimes better, than other processes on the market, that require people and time, so they can cost more to implement.
This makes it a financial decision, for any organization, as to what documents they can afford to make available in an accessible format. In many cases, that means that because of the restrictions of budgets, information is not released to anyone. This is not so true for new information. That legacy or archival information is often overlooked in these discussions. Many large libraries of archival material can take millions of dollars, and thousands of hours to make accessible. Without technology, we bring that cost way down to pennies per page, and weeks, instead of years, for full library conversions.
It doesn’t make sense for us as a community to expect that companies spend hundreds of thousands of dollars to make documents accessible, that may or may not be consumed. I would rather we have access to everything, with a reasonable level of accessibility now, and if we need to have a better version, then the owner of the content should be required to make it available within a reasonable time period. Now, back to the technology, and why ours is better than current solutions.
We deliver results across platforms in multiple accessible formats, including Braille, with an uppercase B, large print, and multiple languages to anyone in the world with a browser, with our usual focus on simplicity and ease of use. We want blind people to be able to benefit from this technology for any digital content they find on the web, without requiring them to invest hours to learn about document accessibility first. That’s what makes us different. I see no difference in what we are doing than with any other assistive technology.
We have never promised a silver bullet. We are developing an emerging technology that is only going to get better with use, but we’re not stopping there. As we discussed in the interview, we’re building and training a machine learning model that will let us go beyond the current state of the art. That’s why it’s important that people start using our solution. We need to collect as wide a variety of real documents as we can, in order to feed our machine learning model. Some of these documents will need to be remediated by a human. As we said during the interview, the result of that mediation will help us, and everyone who uses our service, for years to come.
We’re working on automated remediation of diagrams and charts, as well as mathematical notation and other specialized notations. We understand how important these things are, both in education and on the job. We’re also not the only ones working on these things. Other companies and organizations have been working on access to these things for quite a while. We incorporate the best available solutions into our automated remediation process. When we do, you’ll get an intelligent and easy to use product that gives you the best available automated access to a variety of document formats, all in one place.
As for color contrast and fonts, by default, Scribe preserves the original visual appearance of the document, within the limitations of your chosen output format. You can choose to override this. For example, by checking a single checkbox, you can request a large print version of the document. Our goal is to serve the needs of people with all types of print impairment, not just blind people using screen readers. That’s also why we don’t use hidden links. When Scribe is embedded on a website, the link to get an accessible document with Scribe is clearly visible.
You asked if our product can protect you from situations where you don’t even know what information you might be missing. It’s true that we can’t yet do anything about that. For now, the best we can offer is that if you feel that you’re missing information you need out of a document, you should probably request human remediation. Most of the time, what we provide within seconds is enough. I assure you that every .PDF a sighted person looks at, isn’t perfectly formatted every time. Formatting is important, but so is equal access to the information that is being published right now, instead of some indeterminate future.
About us being a middle man between the content providers and/or users. It’s important to be realistic about doing what we need to do to make information accessible. It would be nice if all content providers implemented accessibility standards, but we all need access to these documents now, not when they get around to it or are forced to by court order to do so. We would never discourage content providers from directly making every one of their documents accessible when created, but we know it’s not always feasible for many of them to do so. That’s why we’re offering our solution.
In the end, it’s more important that we all have timely access to the information we need, than that it’s done without going through an intermediary. Finally, you compared us to accessiBe. Remember that we are blind people first, we need the technology we’re developing as much as you do, and we value the input of the blind community because we are a part of it. Unlike accessiBe, which seems to view our community as a problem that customers can pay accessiBe to sweep away. While we appreciate your concerns about the limits of our technology, and the risk of overhype, we hope you’ll understand why we’re different from accessiBe and other companies like it.”
Speakers: Mosen At Large podcast.
Michael Chopra: Good evening once again, Jonathan, and Mosen At Large listeners. This week I’m wondering about adapters. If at all possible, is there an adapter that can be used with a USB-C cable? Because my laptop has only got USB-A ports, and I want to get a fast charger. A USB-C to Lightning charger, which works with my 8 Plus that I have. The thing is, I wouldn’t be able to connect it to iTunes if I need to, because I have only standard USB ports, not USB-C ports. Is there any sort of adapter that I could get that would allow me to do that?
Jonathan: Michael Chopra with that inquiry there. Thank you, Michael. I think what you would need to do is get the USB-C to Lightning cable with the Apple power brick that is designed to power iPhones and AirPods. You can find that in the Apple Store. That way you’ll be able to charge with maximum speed. I must say that newer iPhones charge nice and quickly with this adapter. Then what you would need is another cable, USB-A to Lightning, for when you want to connect your devices to iTunes.
Now, I have quite a number of messages here from Carrie Francis. It’s quite difficult to synthesize them into one, but the general gist is that Carrie has had quite the run around trying to use audible.com. It sounds like she’s been hit by some two-factor authentication problems that that has then resulted in Amazon throwing up an inaccessible capture. She says she’s been sent inaccessible text messages that are intended to help her get into her account. I’ve not seen this myself. I’ve only seen Amazon send a code that you have to type in, and it’s always been very accessible.
In fact, it’s really easy on the iPhone when that happens, if you’re logging in on your iPhone, because when Amazon texts a code like that, it actually appears right above the field where you have to enter the code. You don’t even have to go into the messages app. You can just double-tap that code, and it pastes it into the edit field for you. Then you can press submit. What I would recommend people do is definitely turn the two-factor authentication on, but use Microsoft Authenticator, Google Authenticator, or one of these authenticator apps that generates random codes for you to enter.
It’s much more secure than text message authentication. Unfortunately, there are scams out there where people are hijacking numbers to get in. The authenticator route is a very secure means of authentication. I will demonstrate this at some point. Probably with the Microsoft Authenticator app that I use. Although I may not use it long term because this kind of authentication is built into iOS 15, and there are some advantages in using Apple’s solution. The one thing that some people may struggle with, is that when you set up this method of authentication, one option to set it up is to scan a barcode. I have no problem with this at all.
I just make sure my screen brightness on my PC is set to about 50%, and I point the camera at the screen, and I don’t have any issue with the QR code being scanned, and I’m up and running. At that point, you can just go into the app whenever you need to sign in, and you’ll see the random code there, and you type in the code. They regenerate every 30 seconds. Carrie also asked whether she can use the Audible app to purchase Audible items. You didn’t use to be able to, and I’m not really an Audible user anymore. I am right off audiobooks just because of my time constraints.
My understanding is you now can actually use Audible’s own app to make purchases. That there has been a breakthrough in that regard. In one of her several messages on this, Carrie also talked about finding things on a page when you’re browsing with Safari for iOS, and whether there were gestures that could help you do that. There is the item chooser, which is a neglected feature in iOS, and accessible with a two finger triple tap, and there’s a search field that comes up for you, all items are on the screen, you can type into that search field and then go to the item that you’re looking for. You can do that.
If you’re going to do a lot of web browsing on Safari for iOS, or any iOS browser, I’d recommend investing in a Bluetooth keyboard. They’re not too expensive, and it makes browsing with iOS a really good experience. It’s very similar to a Windows screen reader at that point. You can turn a layer of navigation and quick keys on, where you can press a key to get to certain form fields. You can press the VO with F key to search. VO can either be Control and option, or the Caps Lock key, and you can just search for an item that you’re looking for on the screen. It’s a pretty good experience overall, using a Bluetooth keyboard with voiceover for iOS on your iPhone.
I’d recommend checking that out. I hope that I have covered the key points from the many emails that I’ve received on this. Now, we’re going to talk about space invaders. Whoa. I’m not talking about the old game that people used to play in the ’80s. This is Dawn Davis, and she says, “Someone recently wrote into your podcast about attitudes of the general public. I would like to tell you a story which gives a good example. It is mostly describing the right that the sighted public feel they have to invade our personal space. Recently, my sister and I were on a cruise. I decided to get into the SPS, which was for the general public. I had been in for a few minutes.”
Maybe that’s the spa. I think that might be what it is. “I had been in for a few minutes when a man came up and asked whether it was okay if he joined me. I said, ‘Sure.’ I could hardly say no. He somehow cottoned on to the fact that I was blind, and proceeded to ask me the usual questions. How long have you been blind? Et cetera. When he’d finished with that topic, he said, ‘Do you mind if I say a short prayer?’ I thought, ‘Oh, here we go.’ I said, ‘Okay.’ He said a few words and then suddenly came out and said, ‘Do you mind if I touch your forehead?’ At which stage I said rather loudly, ‘Yes, I mind,’ and jumped out of there very quickly.
I was both angry and embarrassed. It made me think about how sighted people are so ignorant as to believe that they have the right to take advantage of another person and do something that would normally be totally unacceptable behavior.” Thank you, Dawn. Yes, and we’re supposed to put up with that, aren’t we? It’s amazing, the exemptions that are made for people who claim religious grounds for things. Depending on how busy I am, I actually quite enjoy it when every so often someone comes to the door and wants to hand me literature and everything, and I do enjoy having a good debate, and they probably wish they had never come to my door.
The really weird thing is when somebody does this to you when you’ve got somewhere to be, when you’re just walking down the street. People come up to me and it’s like a Peter Cook and Dudley Moore sketch. They say, “Good morning.” You say, “Good morning.” Then there’s a pause, and then they say, “Have you been saved?” I say, “They tried, but there’s not a hard drive big enough because I consume so much data.” That goes over most people’s heads. The one that was really interesting was when I was a university student, and I was walking along, heading to a lecture, and it did go down like that.
Initially, this person came up and said, “Good morning.” I said, “Good morning,” and walked on. I didn’t realize he was still with me. Then he said, “Did you know that God can heal you from your blindness?” I said, “Really? Why would God want to do a terrible thing like that for?” He said, “What do you mean by that?” I said, “Well, I’m heading to the library, and in that library, I’ve been allocated a room, and in that room, for the next few hours, I’m going to be read to by a succession of beautiful women with very nice voices, and I don’t want God to heal me from that. Thank you very much.”
He was flummoxed. He paused for a while, and he said, “Oh, I see your blindness is of the soul as well of the eyes,” and walked away. [laughs] It’s a problem. It’s a problem because people perceive that we are people who are in need of a cure. People can come back and say, “Oh, they just mean well. Leave them alone.” What they are saying is that we’re not good enough as we are. That somehow we need fixing. It’s not acceptable. It is not. Disabled people are just fine the way they are. They don’t need curing, they don’t need to be patronized, they certainly don’t need their space invaded. Back off.
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Jonathan: It’s a note from Lena. She says, “Hello, Jonathan, I enjoy your show very much. You’re not afraid to tackle the hard things, and when you do reviews, you present pros and cons. I like the balance. I like that it is a forum where people can learn to agree to disagree. We seem to have a huge problem with that in the United States right now. I do a lot of advocacy work because I need and have a right to access. The lazy, blind people do frustrate me. I think the organizations are not doing a good job either. NFB used to, but they kept their legal work quite a bit a few years ago.
As a retired teacher, I support focusing on making sure that kids have a good education. I think both education and legal work need to be done, though. I get lots of flak from the blind community. I think that part of blindness training should be teaching people what their rights are, and how to advocate for themselves. I always try to engage in discussion and negotiation, but sometimes a lawsuit is the only way to get something done. They are a phenomenal amount of work, too.” Thank you for your email, Lena. I imagine that lawsuits must be difficult.
I have never actually been involved in one. I’ve done a lot of advocacy over the years, but not filed a single lawsuit. I think that’s because the advocacy environment is so different in New Zealand. We have a Human Rights Act here. What happens is that if you feel you’ve been discriminated against, you can take an entity to the Human Rights Commission. The first thing they attempt is a mediation process. It’s without prejudice. You can go in there, have a free and frank discussion. If that process doesn’t work out, then you can go to a more legal proceeding, through a disputes resolution hearing. I have not done that.
Any discrimination complaint I have filed has been through this mediation process. In fact, in my entire life, I have never been in a courtroom other than when I was advocating to remove any ambiguity around the law, which was interpreted sometimes, to suggest that blind New Zealanders couldn’t serve on a jury. I went into a courtroom to be filmed walking up to a jury box for a news item. That is the only time in my life I’ve actually ever entered a courtroom. I’ve not conducted a single lawsuit, but I know it’s much more common in the United States.
I have done a lot of legislative advocacy, and have been very successful in that, to the degree that some of the legislative advocacy I started has resulted in worldwide change. I’m really pleased about that. You’re right, you have every right to use whatever provision the law of your country allows. What on earth is the point of having done all the advocacy for civil rights victories if you then have other blind people who benefit, by the way, from all of your work, criticizing you for using the very law that you fought to get in place? It’s a ridiculous argument.
Now, I may well be about to end my streak of never having been in a courtroom because if the Broadcasting Standards Authority does not uphold my complaint regarding Radio New Zealand’s pejorative, and discriminatory, and harmful use of the word blind, then I will probably attempt to take that to court. That will be a new experience for me. I also agree with you that we should be teaching younger blind people and people who enter our community about our rights, and what civil rights legislation in our particular country exists. I would go one step further and say that we should be teaching them about our history.
This comes back to the discussion that we had earlier in the year, about a blind culture. The more I think about it, the more I think it does exist, and that we should celebrate that, embrace it, preserve it, grow it. To do that, we need to acknowledge those people who have gone before us, who have made sacrifices, who came up with thoughtful philosophical positions that they were able to articulate, and who then made change happen. Because sure, there’s a lot of progress still to make, but without those people, we wouldn’t have moved as far as we have.
I think we should celebrate those people, we should salute them, we should give them the respect they deserve, and we should make sure that the lessons of history aren’t lost to coming generations.
After a wee break, Nick Zammarelli is back with some questions. First, he says, “I have an old Bose Lifestyle 38 home theater/music system, which still works great, but the operative here is old. How old? You ask. Try 2004. It has the ability to store music, but there’s only one way to do that. One must burn a CD with the desired music on it, insert the CD into the Bose system, then press the store button.
Sounds pretty good, except for the fact that I can no longer burn music from Apple Music without getting rid of the DRM components. Is there accessible software to do this?” Nick, you’re able to burn onto CD, music that you own, but it is a breach of Apple’s terms and conditions to burn music to CD that you don’t own. In other words, if you have a playlist that you’ve got from Apple Music because you’ve paid your monthly subscription, you cannot burn that onto a CD. Now, I don’t know if there’s a way around it, but if there is, it ain’t something we’re going to discuss on this show because that is highly illegal and a breach of copyright.
The trick is to just make sure that you have playlists of material that you actually own yourself. Either because you’ve ripped it into your iTunes collection from CDs, or you’ve purchased it through the iTunes store, or some other place. “Second,” says Nick, “I have a dear friend who is also a former student. She’s just opened a princess performing company. She and her employees, dressed as Disney princesses, and perform both live and virtual shows for young children. She needs a good portable mixer that she can take with her to gigs, so that she’ll have the best possible audio quality for both performers and audience alike.”
Now, is it a mixer that she needs or is it a really good set of speakers? Because if the material is prerecorded, then she may not need much of a mixer, potentially, because it could all be one source, but if she has music requirement and perhaps the requirement for people to speak, I guess it all depends on how many performers there are, because she’d want a microphone for each person. You’d have one channel per microphone, and maybe one single music source, presumably. Without knowing a little bit more about the requirements here, how it works, is everybody mic’d up, do they talk live or is this just a music thing, it’s difficult to answer that one.
As a general rule of thumb, for something like this, I would choose a good quality music store. Sweetwater is very popular in the United States. I think there’s another one called Musician’s Friend, that also has a good rep. Go in there or call them, and explain exactly what’s required. Those professional places are normally really good about recommending specific gear that might do the job. Nick also says, “Please, tell us everything you can [laughs] about Dragon NaturallySpeaking. I know you’ve mentioned it on the show before, but if you could elaborate, somewhat, I would appreciate it very much.
I’m thinking about purchasing it. I’d like to know all there is to know, especially about the mobile edition, if in fact, that is what you are using.” I’ve got the Professional edition on my PC, Nick, of Dragon NaturallySpeaking. You talk to your computer, you can also control your computer with it, you can give it commands, and you can make your own commands. You can go through a training process. The more that you train it and correct any errors that it makes in your dictation, the better it gets over time, at understanding you. What I would emphasize is that it’s on a whole different level from the dictation that you find in Siri or Android, on your mobile devices.
This is really serious quality dictation, and it’s useful because it’s all on your system, it’s responsive, it’s local, it’s brilliant. You have two accessibility choices for Dragon and JAWS. One is to use J-Dictate, which makes just the dictation elements of Dragon accessible. The other is J-Say, and that gives you full control of your computer with your voice. There are people who hoon around, walking around all day long or doing dishes or something, who can do a lot of complex computing just by using J-Say and Dragon. Both of those products are from Hartgen Consultancy, so you can find out more about them from hartgen.org.
I have had occasions where Dragon has been a bit fiddly and my profile has got corrupted, and it’s been a bit of a pain to get going again. It would be prudent to back up your profile regularly, but when it’s working, it works really well. It’s a time-saver. I think there’s a discipline to it though. It’s a different mindset dictating the way that you write. We speak, a lot of us do anyway, differently from the way that we write. When you write, it’s usually a bit more formal. I suppose past generations had a lot more experience dictating to secretaries, clerical staff, that sort of thing.
When I started using Dragon big time, I did find that it took a while for me to get used to speaking in the way that I wrote, but it can certainly help a lot if you’re really on a roll, with this thing being so reliable as it is when it’s working right, you can dictate a lot faster than you can type, and I’m a really fast touch typist. It’s certainly worth it for various applications. If you have used Dragon naturally speaking, then maybe you can let Nick know how you’re using it, what you’re using it for, whether you find it helpful or not, is it more trouble than it’s worth. We’d welcome your perspectives as ever.
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Jonathan: “Greetings Jonathan,” writes Marissa, “I have noticed a very consistent issue with voiceover, both on the iPhone and iPad that I hope Apple accessibility will address. When using any of the United States voices voiceover will mispronounce common words. For my example, I am going to mention that I am using Samantha. Words that she mispronounces include, but are not limited to, headache.”
Siri voiceover: [unintelligible 00:52:46].
Siri voiceover: Determination.
Siri voiceover: Showing.
Jonathan: “I am uncertain if others who use voiceover in different languages are having this issue or if it’s just centralized to the United States. This issue occurs regardless of which voice one uses. The mispronunciations of common words are endless. I am aware that one can add to custom pronunciations within voiceovers speech settings. This should not have to be done in this day and age. I do hope that others will contact Apple accessibility to raise this issue.” That is absolutely bizarre. I have to say, I don’t hear a problem with determination, but headache and smelling, that’s really, really bad. Wow.
Andy Rebscher: Hello, Jonathan. This is Andy Rebscher, and you were discussing radio automation systems better known as FRED, the freaking ridiculous electronic device, and I had to laugh because you’re halfway across the world for me and you guys call it the same thing we did. I walked into a radio station in Maine when I first moved here and they said, “Hi, we want you to meet FRED,” and there he was, this big box in the corner that had a rack full of reel-to-reel tape decks in it, a bunch of cart players and whatnot.
One of the automation stories that I’ve never forgotten was when I was a high school kid, there was this beautiful music stereo 100 station. Of course, they were automated with one of those tape systems and somebody had put one of the reels on backwards, so you heard something like-
-name that tune. This might be a little geeky, but I think you’ll get the point. Usually, those systems operate where it’ll play something from this reel and then something from that one and blah, blah, blah, and they had different categories of music. In this case, it played that backwards reel for about an hour straight because the tone that’s supposed to tell the machine, “Okay, this song is over, go to the next one,” is on the left channel of the tape. Now, with the reel flipped over, playing backwards, it was on the right channel, so the machine never noticed and it just sat there and played song after song backwards for about an hour.
One last story for you. I was a road musician for a while and I would come back to where I lived and then I go away for four or five days and then I’d come back again. Came back one day and the station that used to be Solid Gold Rock and Roll all of a sudden they were playing really cool music. I’m thinking, “Wow, what prompted these guys to change their format, turn into such a cool-sounding station?
I went to visit one day, and I said, “What happened to your station, man? What did you guys do?” They said, “Well, actually what happened was our automation system got repossessed.” They couldn’t afford to pay the monthly payment that covered the Schaefer 802, or whatever the thing was, and its accompanying tapes. Somebody on behalf of Drake-Chenault came and took it away. Talk about a compelling reason for an instant format change. This is Andy Rebscher, so long.
Jonathan: Love it. Thank you, Andy. Talk about triumph out of adversity with that format change. Radio geeks love listening to radio stations testing, and I think I’ve talked about this in the last few weeks, and launching. The other thing that radio geeks really enjoy is the format change and how they do it. Some radio stations have had a lot of fun changing formats. If you’ve got memories of radio stations changing formats and how they did it, by all means, feel free to share.
I’ve heard some of the really big ones, like 93KHJ going off the air in the ’80s sometime and being replaced by a station with different call letters. I think it was, it might still be a Spanish-speaking station, and WABC, of course, going from their classic music format to talk. There are a number of really big format changes that I’ve heard from various places around the world. I love that stuff.
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Jonathan: I am more blind than I am brown. That is Shermeen Khan’s bold declaration in a recent editorial piece that she wrote in which she explained that blindness is a much stronger part of her culture than her Pakistani heritage. Now, given all the discussions that we’ve been having on the podcast about blind pride and blind culture, I had to find this woman the author of this piece to get her on the show to explore some of these really interesting issues, and here she is from Canada. Shermeen, it’s really good to have you on the podcast. Thank you.
Shermeen Khan: Thank you so much for having me. It’s an honor to connect with you and be on the podcast.
Jonathan: To give us some context, let’s get the backstory. Were you born in Canada, yourself?
Shermeen: I was. I’m the last of four children born to Pakistani parents who immigrated to Canada in 1970 and then had the lot of us. I grew up in Toronto but definitely had a foot in each world. I was exposed to the Western world, but also very much steeped in what I would call Pakistani culture at home.
Jonathan: What does that entail being steeped in the Pakistani culture?
Shermeen: I grew up being able to speak Urdu, which is I would say probably the dominant language in Pakistan. Although I suspect there are many others. I grew up in a Muslim environment. I’m really familiar with the calls to prayer, and lots of Muslim behaviors, so to speak, are very much entrenched in the culture as well. When people talk about Islam being a way of life, they’re quite literally meaning that it actually affects a large part of your day. It affects the way people pray; it affects what they eat. It affects the way they socialize and what they drink and don’t drink. In many ways, it bleeds into every area of your life.
It also looked like not overtly celebrating Christmas and Thanksgiving. My parents let me “celebrate Christmas” so that I could have the experience of Santa and presents and all that
fun stuff. We certainly ate delicious Pakistani food, which will always be my favorite. In many ways, I have the best of both worlds.
Jonathan: I suppose when you look at things like the secular elements of Christmas, Christmas was originally a pagan festival anyway, which was appropriated over the centuries, so you can get away with that. Do you identify as Muslim now?
Shermeen: I don’t. Actually, I grew up Muslim, and when I was in university, I dabbled in hardcore atheism and a pretty deep I would say rejection of the concept of any sort of organized religion. I struck out; I rejected Islam. This came complete with deciding at the age of 22 that I was going to eat a plate of ribs and then I had toxic shock syndrome after that because I had never eaten pork in my life and tucked into a plate of ribs, which was definitely not among my smartest decisions.
I don’t have a lot of smart decisions to begin with, but that just wasn’t up there. I had that and then a few years ago I became a Christian, and that’s where I’ve settled. I’ve got, hopefully, a bit more life in front of me, so we’ll see what happens next.
Jonathan: What brought you back to an organized religion after having embraced atheism for a while?
Shermeen: I think I had always looked over my shoulder. There are some people who I would describe as perpetually spiritually thirsty or seeking. I don’t know that we necessarily choose to be that way, to begin with, I think some people seem spiritually neutral, but after leaving the faith, I kept an eye on it. I was still always fascinated by people who had beliefs and really frankly always struggled to reconcile people who had faith with people who were intelligent, inquisitive, logical thinkers.
Over time and through discussion and through reading a lot of literature, I came to know many people who are Christians who I also thought were not parking their intellect at the door when they went to church and who really had a robust exploration of their faith and also who were very candid about what they didn’t know and what they didn’t have answers to.
The reality was, the way it was explained to me was that you can have questions on this side of the fence as well. We don’t have all the answers either but we’re also Christians. That, combined with a few life experiences, I took on a pretty, significant to me anyway, leadership role that really was a turning point for me personally and professionally. Largely, I think being a blind leader of a sighted team comes with a whole host of changes in dynamics and how comfortable you are relating to people and giving direction and simultaneously needing help but also providing direction. Navigating that mentally was massive for me.
A combination of that and then connecting with people who I think had a handle on the spiritual approach as well, I think brought about a shift for me.
Jonathan: Presumably your abandonment of Islam for atheism and then your adoption of Christianity would have been some contentious things to deal with in your family.
Shermeen: They sure weren’t because I didn’t tell my parents about it. [laughs] That would be me taking the coward’s way. Although the way I see it is my parents would have been devastated if I had told them that I was an atheist. I think if I had been honest with them about being an atheist, it would have felt like I was saying it for the sake of making my decision known, which seems to me to be very much a feature of a bit more of an individualist culture or individualist approach that you need to know what I think about everything and you need to accept what I think about everything.
I thought it would do nothing but hurt them. I think they would probably feel like they had failed as parents and I didn’t want them to feel that way. It was partially that, and it was partially my discomfort in navigating that conversation and having it in the first place that I think kept me from going there.
Jonathan: I have this in my mind, this legal erudite person saying, “I fail to see the relevance of this line of questioning, my Lord,” but the reason why I’m exploring this with you is because we are going to talk a lot about blind culture and your perception of what that is. I’m wondering whether had you taken a different path and you had stayed, it was more like the old path that your parents were in, whether blind culture would have had as much of an opportunity to dominate. In other words, your belief system changing based on your Western influences must have had an impact on all of this to some degree.
Shermeen: I have never thought of it that way. That’s an interesting connection. Yes, it’s certainly possible. Actually, one of the neat things about coming from a collectivist culture though and my parents’ background is I think a bit of an embracing of collectivism as a concept and being much more comfortable with it. By that I mean I’m comfortable in a lot of blindness settings and I feel comfortable saying that.
I don’t feel it necessary to add a lot of disclaimers about it being a particular kind of setting, a particular kind of blind person, certainly, I gravitate more towards people who I feel are relatable. That’s a given and I think something that we all do, but I’m comfortable saying that I’m comfortable with blind people and let a logical person conclude that within that subgroup, of course, there are people that I connect with more than others, but I think people who come from collectivist cultures are a bit more comfortable making these types of generalizations.
It’s interesting because in a lot of conversations about disability and blindness, we’re very quick, and in many ways, it’s a good thing, but we’re moving the discussion towards intersectionality and being blind and brown or blind and another disability. Part of me celebrates that and then part of me says we’re nowhere near done with the blind discussion yet though. I always want to go back to it, especially for those of us for whom blind is the biggest part, which for me is the case. I think, yes, it’s interesting. My parents’ culture definitely, I think I came with the built-in love for groups.
Jonathan: Was there a tipping point? Was there a moment where you suddenly realized in some sort of flash that yes, I am more blind than I am brown?
Shermeen: Yes, there was. I’m basically completely blind. I’ve dated blind men and I’ve dated sighted men, but when I was dating my now-husband who’s also blind, it got serious and it got to the point where I wanted to introduce him to my family. I knew they would be a bit reluctant. My family is very loving but I think they had very much hoped that their youngest would marry within the Pakistani community, would marry within the Muslim community.
I can see why that was really important to them, and the way they framed it was that they wanted me to ultimately marry somebody with whom I would have a lot in common. They talked a lot about, “It’s not just you and him getting married, it’s two families getting married,” which is a very collectivist way of framing it. It can be lovely and it can also be incredibly disastrous.
At that point, I told my parents about Chris and they were immediately taken by him, they really liked his soft-spoken intellectual type, really funny, really respectful, good manners, the kind of guy that overall had the right kind of package and I think who they were happy to know, but they immediately said, “I just don’t know. He’s lovely, but he’s not Muslim, he’s not Pakistani, he’s not in our world.”
That’s when it really dawned on me the importance of having a blind culture, so to speak, and that’s when I really realized I actually am more blind than I am brown. I never thought of framing it in that hierarchical way. I think there’s a bit of a reluctance to look at our identity through that lens, but for me, it really helped make sense of what I prioritize because when I think about what I have in common with Chris, it’s a way of looking at the world, it’s a way of navigating the world, it’s being able to relate to the feeling of walking upstream.
When you’re having the crappiest day working in a largely sighted organization and you come home and you can relate about an accessible software or that awkward moment when you arrived late to a meeting and you can’t find a place to sit and you have to make some joke about it so that you defuse the tension in the room, or you got really hungry at lunch and you worried about how you were going to navigate the cafeteria because it’s this big open maze and you really want to try that new butter chicken. Find me a blind person who chews gum regularly because we can never find garbage cans easily.
It’s a world of being able to relate on that level in such ways that are so close to my experience of life but then there are such good ways of relating. Blind people are disproportionately more musical than the sighted population. We have at least double the rate of perfect pitch, which is being able to identify a note by listening to it. We have a different sense of humor. I think blind people largely are really good imitators, something to which I think a lot of our family members will attest, but do really, really good impressions, and how we’ll laugh good-naturedly at hearing another blind person feel about for something and knock something to the floor.
We laugh good-naturedly because it sounds blind and funny and because we’ve been there. How we would trust each other to babysit our children, which is something many sighted people might not entrust us with. There’s a whole world that I realized that I shared with Chris. It’s also just, there’s something so neat about Chris not having a lens on my physicality that I don’t have.
I don’t know if this is a bigger deal for women than it is for men. Pardon the 4,000 generalizations I’m making here, but there’s something about not being able to see yourself and other people being able to see you that over time can culminate in a general feeling of it’s disconcerting. Again, this might just be me. This is the Shermeen show here.
Jonathan: It is.
Shermeen: [chuckles] There’s something about that, and so that Chris doesn’t have a lens on me, and I don’t need to worry about how I “look” as I walk around the house with a baggy t-shirt and stained shorts or something like that. It’s neat that he doesn’t have that lens, and that there’s no perceived hierarchy when we’re out and about and we’re raising our children.
Some of my friends who are blind who have sighted spouses have talked about how often the sighted spouse is credited with doing a lot of the child-rearing and a lot of the physical management and it couldn’t be further from the truth. By all of this, I feel like I need to fall all over myself and say, “I 100% believe that a blind person could find just as much happiness and just as much meaning and just as much connection with a sighted spouse.” It could have been me. It could have been any of us. I didn’t build a blind person to fall in love with, he was just there. He was who was there.
It could have been a sighted person, and we need sighted people. We need sighted allies, and we need sighted loved ones. There’s nothing greater than meeting a sighted family member of a blind friend because they know how to guide and they know how to help you find food at a buffet. It’s neat. It’s like meeting somebody who gets it, but they’re not blind. We need those people and it could just as easily happen in that context. That’s a very long-winded way of saying that’s how I discovered blind culture.
Jonathan: I have a big smile on my face at your remarks about imitating because if you meet any blind person who has been through school until they perhaps learned a little bit of care, you will find a story about a blind kid who imitated a teacher or some authority figure when they didn’t realize that that person was in the room and within earshot.
Shermeen: Yes. You’ll always find a family member saying, “Oh, do grandpa. Do grandma. No, you do a really good–” Exactly. It is a thing. They’re great at it.
Jonathan: Yes. Even my blind friends say to me, “I bet you imitate me when I’m not around.” I say, “Of course I don’t,” and they know I do.
Shermeen: No, you would never. No, of course not.
Jonathan: It is tricky and I’m speaking as somebody who has been in both situations, being married to a sighted person and a blind person, not at the same time, I hasten to add.
Shermeen: Right. Okay. [laughs] Thanks for clarifying.
Jonathan: It is tricky to make sure that you aren’t developing a relationship of dependence or undue burden when you have somebody with working eyeballs in the mix.
Shermeen: It’s hard because you want to strike a balance between not developing undue burden and dependence but also contributing according to your strengths. Right?
Shermeen: Some people go so far the other direction, and they’re like, “No, I’m not going to have my 15-year-old let me know if I’m holding a Cheerio’s box. I’m going to use Seeing AI.” You can and that’s fine, but it would cost that 15-year-old a millisecond of shooting their eyeballs in your direction. [chuckles] There is a balance, I think that we always are looking for.
Jonathan: You talked about having dated sighted men, what really was so bad about that?
Shermeen: Probably the particular sighted men I dated was probably what was bad about it. My sister describes my choice in men as empty vessels.
Jonathan: You can always rely on your sister to give you blunt honesty. [laughs]
Shermeen: Yes, she did. I think my sisters were never super fond of a lot of men I dated in my early 20s. I think they were referring to the fact that I was dating men who although sighted were a bit of a dime a dozen, your run of the mill just fellow who there’s nothing wrong with them. Certainly not remarkable. Nothing to write home about. It was that. I think I was in my early 20s so I think I was significantly more insecure than I am now.
Like I mentioned earlier, there was nothing wrong with them being sighted, it wasn’t that they were sighted but that they had a lens on me that I didn’t have on myself was always a little bit disconcerting. I think the people in particular that I dated may have harbored some inner reservations about me being blind that they couldn’t quite articulate or quite be comfortable with.
That’s certainly with respect to just these individual people. I think sighted people are lovely, and we certainly need them. I know a lot of people who have sighted spouses, and it’s wonderful. They have really, really great relationships, and these are some wonderful people that we need to have around. It wasn’t that they were sighted, it was just that they were losers.
Jonathan: Have your parents accepted your husband now?
Shermeen: Oh, yes. They really, really like him.
Jonathan: That’s good. Did that take some time?
Shermeen: Remarkably, it took a lot less time than I thought it would and I think it’s because Pakistani people tend to really value manners and well-spokeness and intelligence and that kind of thing, and education, and he really had those checked. They certainly weren’t embarrassed that I was marrying him, which was pretty significant. We had a huge Pakistani wedding, which was awesome.
We gave all of our Pakistani guests one wedding time and we gave all of our Western guests another wedding time, just to make sure everybody got there at the same time, and they did. It worked. We told the Pakistani guests it was starting at 6:00 and they rolled in at 8:00, and we told the Western people that it was starting at 8:00 and they came at 7:30. It was perfect. Everyone got there, and it was a lovely huge wedding and I think my parents were really happy.
Jonathan: There are some people who believe exactly the opposite from you. I sometimes get emails that start off with things like apart from accusing me of being radical and angry, and I’m probably the least angry person I know, actually. Anyway. Then they go on, and they often say, and I’m quoting directly, “I live in the sighted world. Most of my friends are sighted.”
They’re saying this as a badge of honor and they’re saying it in a way because they think it will somehow demean me, even though I go to my day job and I work with 120 of my staff and I’m the only blind one there. Somehow there’s this perception that marrying sighted, living in the “sighted world,” whatever that is, not perhaps working in the blindness or disability system makes them superior.
Shermeen: That is a universal thing, I think. I feel like I used to think that way when I was younger. I hate being one of those people who’s like, “Well, back in my day, I thought this way,” because I feel like I’m becoming old and curmudgeonly. I always seem to think, “Well, when they grow up, they’ll change their mind,” but it’s not true, because you have a lot of people– There are some organizations that really live by that philosophy, so you can see how deeply ingrained it is.
When I hear about that, it’s very sad because I know so well, from experience, the emotional toll of what I think we call passing, appearing as able-bodied as possible and making sure you surround yourself with sighted people and always remembering to look in their direction when they talk and making sure you look the way they would want to look and making sure you order something on the menu that you feel comfortable slicing and dicing in front of them. There’s an emotional energy that is constantly being used.
I think some of these ardent people would say that’s not the case and this is just how they just so naturally blend in, but it’s really sad because it really says that the closer we are to sighted, the better we are. The closer we behave to sighted, the closer we seem. When we hear that people forget we’re blind, it’s the best compliment we could ever get, but it just feels so sad and dismissive.
I think we see this in so many other contexts. You see a lot of people being really happy that they feel “whitewashed.” That’s another thing that’s rampant in the brown community or even the Black community to some extent. I hear that a lot as well and it really, for me at least, says that that person really has not embraced blindness as a really meaningful part of their identity. Then I would go even a step further and say that there is potentially even a sense of shame of having that at the forefront because I don’t think those of us who are quite happy in our blindness, like you said, you oversee over 100 sighted staff, and navigate about in the sighted “world” all day.
One of us, the group, will acknowledge that at times that can be exhausting. Whereas I think the naysayers will say, “No, it’s really not. This is who I am, and I’m distinct from you.”
Jonathan: I feel sad that there are people who genuinely think there is such a thing as a “sighted world” because really what the world should be is accessible and inclusive of anyone, regardless of impairment.
Shermeen: I agree. I think as long as we think there’s a sighted world we’re always going to be embarking on that slippery slope of eventually apologizing for our disability. It’s exhausting because I’ve been there. We all continue to be there from time to time. Whether it’s you being sorry that you’re the reason they can’t use the software they want to use, or whether it’s you being sorry that your dog is going to shed in somebody’s car and they’ve not really made a secret of the fact that they’d rather not, or that it’s your “fault” that they’re not going to embark on this social get to know you thing.
We all carry the weight of that no matter how self-actualized any of us is about being blind. I think we all still have those experiences. It makes me sad because I also think those people are cutting themselves off from a very welcoming culture of people who actually really get it.
Jonathan: Do you think there’s a difference in the way that people approach or view their blindness, if I may use that, between people who are congenitally blind and those who become blind later in life? Is there a danger possibly, that those of us who have been blind since birth might be perceived to be a bit elitist, a bit of a club that somebody who’s adjusting to sight loss find it difficult to get into or may not be ready to get into?
Shermeen: I don’t know. I would have said yes, but then I’ve met a number of people who because they were really tenacious, ambitious people before losing their sight, they took it in stride and just kept going. I met them and a few months into their sight loss they were training with a guide dog, and properly, not just, “I lost my sight and my aunt thinks I should get a dog.” It was, no, they jumped into O&M training, and then they went and got a dog.
What I will say, though, and I don’t know if this is the case in the rest of the world, but I find in Canada, at least, the needs of the partially sighted are so distinct from those of us who are fully blind that we do end up off in our own spheres. For example, a lot of people will talk about how accommodating people in an employment context is never as expensive as people think.
I think, “Well, it can be actually because if–” I know that you’re not really allowed to admit that, but we might not be able to use their software, we may need to actually have somebody develop scripts for it, we may not be able to. Do you know what I mean? A lot of blindness accommodations it’s an ongoing thing. It’s not like, “Well, we adjusted some of these desks here and this will be your workstation and away you go.” You know?
Jonathan: Yes. We’ve built a ramp or something.
Shermeen: Yes, exactly. With us, it’s ongoing. You get an email saying, “From now on we’re going to use this software for budgeting,” and immediately your stomach drops and you’re like, “Well, maybe you’re going to use the software, but now I have to figure out if I can use it.” Of course, there’s going to be no one who can train me on it so I have to figure out myself. Am I a techie person? In my case, I’m not.
I got off on this wild tangent. Oh, yes. Partially sighted people. I don’t know, but I think our needs are very different. They do tend to be very different, especially, and this I don’t know if everybody has this problem, but I’m very much on this kick lately of transit services like accessible transit services, and of all over the world, it sounds as though services for the disabled are largely overtaken by seniors, and typically not seniors who are also significantly physically disabled.
They’re seniors and through being seniors they’ve become less able-bodied, but I’ve never heard of a jurisdiction that has a really comprehensive para-transit service that actually gets disabled people anywhere on time ever, and largely, they’re overwhelmingly dominated by people who’ve become less able to walk, but significantly later in life. You end up having two groups of people who have similar needs but for very different reasons, and it’s a problem. It’s a problem here, which is totally not answering your question whatsoever, but I always like to talk shop with other blind people because I feel like–
Jonathan: The art of a good interview subject is when the interview subject just gets the talking points in that they want to get in. I’m not going to hold any grudges about that because I’ve done that myself on the other side of the mic. Let me ask you about parenting because you’re a blind mum and you’ve got a blind husband, did you encounter any issues there where people were doubting your competence as a blind couple with your children?
Shermeen: Not at all. No, we really just didn’t. I don’t know if we were really lucky because we were surrounded by good people. We had a lot of blind parent friends who I think really served as role models. No one overtly said anything because I feel with us they would know better. What I think we encounter are things like micro-indignities, like I like to call them. My daughter was fussing the other day and a sighted friend was over, and I was about to reach for her because I knew she was fussing. She was sounding fussy. I said, “Oh, she’s probably going to need her nap soon.” The friend said, “No, no, she’s doing fine. I can tell. I’m looking at her.”
Instantly, my hackles went up, but I didn’t say anything because she’s a lovely friend and she’s a great person, and she didn’t mean it that way, which is what we said, and I believe it. Instantly, it was like, “No, what I can see is more important than what you can hear, and I can see.”
Jonathan: Yes. The faculty of the sight made her judgment superior to your knowledge of your own daughter as her parent, it’s really preposterous.
Shermeen: Yes, it is when you follow it through. What’s mind-blowing is that these are really good people. These are great people. This is like a grandmother figure to my children, it comes through, but it really shows you how embedded ableism is, right?
Shermeen: That she didn’t even think about it, and would be horrified if she knew that it was upsetting to me. Then I’d be comforting her about how upsetting it was to me. I chose not to pursue it, so no, we didn’t experience anything overt, but little things like that.
Jonathan: The worst thing that’s happened to me is being with my kids when they were quite young in a McDonald’s, I was taking them for a treat, and this random individual just walked over to the table and started berating me about how I have no right to have children because I was blind. It was a very difficult-
Shermeen: Oh my goodness.
Jonathan: -situation because it was upsetting my kids. I had to keep my cool, and in the end, I just had to tell this person to leave or I would have to get security involved. It is extraordinary the liberties that some people take. Presumably, you will have those moments when you’re going to have to educate your children about what discrimination is and how to deal with that.
Shermeen: Does that happen a lot though in New Zealand? Because I feel we experience overt discrimination so rarely that when we do our jaws are on the floor. It’s very jarring. It’s extremely upsetting because it’s not common.
Jonathan: It’s not common here either, I’m pleased to say. The one other incident I can really remember was just hideous. We were on a small plane, my first wife and I, we had two children at that stage. I think my daughter would have been about three, and my son would have been about one. I have my daughter next to me. It was a little two-seater, puddle jumper-type plane. The flight attendant came over to me and he said, “Sir, because you’re,” and then he gave a nice long pause, and he said, “blind, we are going to have to sit your daughter with someone else, someone who can see so that in the case of an emergency, they will be able to get her safely off the plane.”
Because of the size of the aircraft, there was this hush, everybody was listening to this conversation. I said to him, “Nobody takes my child from me. Do you think that there is any other person in the world who would care more about my child and getting them out in an emergency situation than one of her parents? You’re being inappropriate-
Jonathan: -you’re making outrageous judgments. I’m not going to let this happen.” Now, what happened then was that everybody on the plane applauded. A female flight attendant came along and told the guy to just back off. I had to lay a formal complaint with the airline. That is the only time really that I can think of.
There’s another minor one, which wasn’t so bad. I mentioned this on the podcast a few weeks ago, actually, in another context, where they had– I remember more about it now from when I first mentioned that on here. They had a thing called the bangers and beer nights. What they did was they invited the dads to come along to the children’s kindergarten and enjoy a bit of a sausage sizzle and just meet the kindergarten staff and things. We went to the kindergarten and we were having a great time.
Shermeen: Wait, it was beer and bangers at kindergarten?
Jonathan: Yes, in the evening.
Shermeen: With the kids?
Jonathan: To get the dads along to learn what was going on at the kindy, yes.
Shermeen: Right. Okay.
Jonathan: Yes. I used to pick up my daughter from kindy all the time, anyway. My guide dog and I would trot down and I pick her up because I was working from home. Anyway, she wanted her dad there because all the other dads were going. I went there. We were having a great old time. Then the teacher came up and said to my daughter, who was four years old, “You’re doing a wonderful job looking after your father like that, aren’t you a good girl.”
I didn’t want to make a fuss of it because she was only four and she was just proud to have her dad there, but I did make an appointment afterwards and said to the teacher, “Look, if you undermine my parental authority like that again, I’m going to have to withdraw her from the kindergarten then make a complaint.” It never happened again. I suspect you will see that eventually that you’re supervising your child somewhere or your children somewhere and somebody will say to your children, “Oh, you’re doing a great job looking after mommy.”
Shermeen: I have actually already encountered that. I told the person– I’ve even written about this in another article that I wrote for the same paper, but they said, “Oh, it’s so great you have her, it’ll make things easier.” I said, “Hold on a second, whoa, whoa, whoa. Back this train right up.” Of all the reasons I have ever heard that parents have children, making your life easier was not one of them. I don’t know a single, single parent on this planet who thought, “You know what? I want to make my life easier now. I know, I’m going to-
Jonathan: “I’m going to breed my very own sighted guide.”
Shermeen: That’s it, “I’m going to have a kid. I’m going to make my life easier. It’s going to be way easier. My life is really hard as a non-parent. I get to lie around and do things. There’s nobody else in my mind all the time. I know, I’m just going to have a child.” It’s mind-blowing to me because my life has been many things since having a child, but easier is not even close to one of them.
Jonathan: Can you tell me any more about the blind pride that you feel? Because when I raised the subject, and I’ve been saying in passing for years and years that I’m proud to be blind because I absolutely am. Then I was challenged to define that blind pride recently, what constitutes blind pride for you?
Shermeen: It’s interesting. I would not say I’m proud to be blind, but I’d say I’m proud of the community I belong to. For me, that distinction matters, I think, because to be quite frank, there are many elements of being blind that I find a massive pain a lot of the time. I become proud when I become better at something than I was a while ago. I would say, I think, I feel a strong sense of dignity in blindness. For me, that means becoming a lot more comfortable with not apologizing for being blind.
Maybe I would like to perhaps one day be where you are, Jonathan, and really feel proud about it. I think right now in my psychological development, I would say I’m really working on not feeling apologetic about being blind and really finding the joy in what I think are the accomplishments of blind people and really seeing that that blindness can be very hand in hand with a very long and dignified and happy and fulfilling life. I take delight in blind culture.
I think it’s really embracing that this is a very real part of your identity that deserves nurturing. I think that does involve really seeking out other blind people with whom you connect on other levels because it’s such a fundamental part of you. I think it deserves to be regarded, it deserves to be nurtured, and it deserves dignified treatment in all areas of your life. I think that’s probably what it means to me, I think.
Jonathan: I don’t know whether you heard the episode of this podcast where my first wife, who was sighted was on, and she was talking about blind culture and how she feels as a sighted person observing, and she’s also a teacher of blind kids, that we should be embracing a blind culture more because then we can talk about cultural inappropriateness when discrimination takes place. She also made the point that people seem to take a lot of pride in the statement, “I don’t let my blindness define me.”
Her challenge in that episode was, “Well, why on earth not? Why doesn’t your blindness define you?” It’s one of those trite little phrases that people assert to almost claim some superiority, like blindness is something to be overcome rather than embraced and accepted as a part of who you are.
Shermeen: Yes. That, I think, also really came to light for me when there was the whole debate about person-first language. It was always about things like disability. I’m a person who’s blind, but nobody ever wanted us to start saying, “I’m a person who’s a woman, I’m a person who’s a Canadian, I’m a person who’s a parent,” but when it came to disability, that had to be the baggage that we attached to the end of a sentence as lumbered along like a bad foot, that you’re dragging behind you and you don’t really want it there and it’s just baggage.
I thought, “No, I’m not a person who’s blind. I don’t separate it from my personess.” How painful in existence is it to live and constantly be rejecting a part of yourself? It’s like your body constantly rejecting its liver, like, “I overcome my liver, I overcome my kidneys.” It’s just there. It doesn’t need to be overcome. You don’t even have to embrace it, but it’s there. It really is just there. To really separate it out as something, and it’s the language people love, they didn’t let their blindness stop them as if blindness presented itself and said, “Okay, I’m here to stop you.”
I remember hearing, it was a saying that really, really resonated with me. Now I need a second to think about it because it was perfect. It said, “I am not a burden to others, inaccessibility is a burden to me.” It really, really– I remind myself of that when I’m about to ask that a meeting location be moved to a place that I know how to get to or something like that. It’s such a powerful statement because it’s reminding why do so many blind people insist on having this burden on their shoulders? The relief of having that lifted off your shoulders and knowing that you’re not this walking problem is tremendous.
Jonathan: I think this is where the social model of disability is so powerful, making the argument that it is actually society that disables us through its poor choices and that’s why we are disabled people. If you talk about people with disabilities, you’re actually victim-blaming. You’re blaming the person and saying they are the person with the disability, where it’s actually society that is doing the disabling through the poor public policy or other choices that it is making.
It’s almost like we have a problem in our community where there are some people who do not accept their own value, that they are deserving of having these accessibility needs accommodated, that they’re deserving of the rights to participate fully in society.
Shermeen: 100%, and it really reminds me of how less disabled we are at home. There’s something about– I don’t feel disabled. Most of us don’t need our canes and guide dogs to walk around our houses. We’ve set up our bedrooms and our kitchens and our living rooms exactly the way we want. It’s not as accessible as it could be because the whatever, materials are still not labeled at the grocery store and that kind of thing, but we’re a lot less disabled at home. There’s a reason for that. It’s because we set it up, and we set it up for our needs.
It’s so hard because I think of our youth a lot and how I wish so much that I had an opportunity to connect more meaningfully with blind youth because there’s a time of your life when you’re really realizing your blindness as a distinct feature of yourself and really trying to fold it in with the rest of your identity. Typically when you’re between the ages of 12, 13 to your early 20s, maybe longer and when you’re really trying to decide how much of your life it takes up and you’re cultivating an identity for yourself.
I think I would have really benefited from having an older blind mentor at that age, who could really help me not walk through the world and apologize for my blindness. I think I could have saved myself a lot of mental health stress, and I think that can be said for a lot of people.
Jonathan: Yes. This is something I’m passionate about. There are many benefits of the mainstreaming of blind children, which is also a topic that we’ve covered on this podcast, but one of the potential downsides, unless it’s actively managed, is the lack of exposure that young blind people have to adult blind role models who are simply getting on with life in all its various guises.
They don’t have to be in super high-profile jobs or anything like that, they just have to be doing the wide array of things that people do while also being blind. It does concern me that those disconnects can occur. That’s why some of the work that the consumer organizations. I think in the US, it’s exemplary. What they’re doing in particular is so important.
Shermeen, thank you so much for sharing your experiences with us so candidly. I hope that we will hear from others who have intersectionality of culture, if you will, people who have a strong culture based on their race or their religion, and yet blindness trumps it, or perhaps for them, blindness does not. It’d be great to get a range of perspectives on this, and Shermeen I appreciate you starting the conversation.
Jonathan: It is that soothing music time again when the Bonnie Bulletin is here on Mosen At Large. Welcome Bonnie Mosen.
Bonnie: Hey, guys?
Jonathan: How are you today?
Jonathan: You’ve got lots of things on your mind, including the optophone from the last episode.
Bonnie: Yes, I really enjoyed that. It was fascinating. It was interesting the way he talked about being an antique’s dealer interested in antique technology. You don’t think about all the things that have come before the stuff we have now, and it makes you wonder what we may have lost.
Jonathan: Did it fill you with complete and utter, utter, utter remorse for being so merciless about demanding that I throw out my antique technology?
Bonnie: Not really. If it was that priceless, you would keep it somewhere safe, not in the garage that gets flooded.
Jonathan: Yes. I see. That’s not true because some of my office stuff has gone too.
Bonnie: Yes. Well, we’ll need a bigger house.
Jonathan: Yes. Well, good idea. Good idea.
Bonnie: Just get a big mansion.
Jonathan: Did you use an Optacon or anything like that?
Bonnie: I learned the Optacon right after I lost my vision. I’ve seen people that are just crackerjack Optacon users. I was never that way. I could read with it, but I was never able really to do what I would have liked to have done with it, and that’s to pick up a book or newspaper and read with it, because my trouble was, we had a guide that the camera wrote in, and when you took that guide off, I always had trouble keeping it on the page and reading the print on the page without going all over the place.
I also had the attachment to the TeleSensory Typewriter, that electric typewriter that you could put an optic– It was an attachment that you put on the typewriter and the Optacon could read the paper in the typewriter. That worked pretty well sometimes.
Jonathan: One of the things that used to cause me trouble with the Optacon was that when I put my finger on the array so you could read what was on the array, it used to go cold and numb. I don’t know why.
Bonnie: Yes. Some people did have that textural. It was weird. You’d stick your fingers, zzzz, and it made that zzzz sound. I don’t remember much about this one, but there was a talking Optacon we had at our school that was being demoed one time.
Jonathan: I never saw that one.
Bonnie: I think they called it the Adam or something. I don’t know what happened to that.
Jonathan: Now Petra who sometimes listens to Mosen at Large, she is a major Optacon ninja.
Bonnie: Oh, Petra that’s awesome. And they love them.
Jonathan: Actually, I think she said she taught the Optacon and she also worked for United Airlines, where she depended on her Optacon to get her work done at United Airlines.
Bonnie: Wow. That’s amazing when you hear about people like that. That’s truly inspiring.
Jonathan: It’s fun to think about all the technology that we’ve used over the years.
Bonnie: It was interesting the way he talked about children, that they didn’t really teach it to children. It was adults and children would naturally probably take to it easier than grown-up’s would.
Jonathan: Yes. I think that’s one of the reasons why we were taught the Optacon, was because they thought, “If we can get young people into this early, who knows what reading speeds they might be able to achieve.” Yes, but I didn’t get on with the Optacon at all, and I think that created a perception among some of the people at the school that I was useless with technology.
Bonnie: I think that’s what happened because it was interesting the way he talked about the inventor that a lot of the blindness agencies in the UK laughed about it and didn’t put a lot of stock into it, which I think happens sometimes, which makes me feel bad, ignoring some of the people that would come to the blindness conventions with their little inventions because they’d have so many tables and everyone had something that they were trying to promote. You had the big boys there, but sometimes it’d be some other little Braille display or something, and I would kind of foo foo it off thinking I’m not interested, but now it makes me feel bad.
Jonathan: I do remember those little booths with all sorts of devices and things. The one I do think of with fondness is the Minor.
Bonnie: Oh, yes.
Jonathan: -which was that little laptop with DECtalk built-in.
Bonnie: So tiny, it was so cute.
Jonathan: Yet, and they had it singing New York, New York with a DECtalk, start spreading the news…
Bonnie: Yes, little Minor. And you think about those things and the Trekker, the Maestro.
Jonathan: I wonder what happened to the Minor. After I saw it at one of those conventions, I didn’t really hear about it again.
Bonnie: No, I didn’t either. I saw it once and that was it.
Jonathan: Did anybody own one?
Bonnie: Did anyone own a Minor?
Bonnie: There was the David.
Jonathan: I know Judy Dickson owned a David.
Bonnie: I knew another person that had a David.
Jonathan: That was made by Baum. That was a fully-fledged computer with a Braille display built-in. It’s like the predecessor to the ElBraille.
Bonnie: Then there’s something that my friend Christina had called the Super Braille. Did you ever see that?
Bonnie: That was a full laptop with a Braille display. I wonder what happened to these guys. Is it APH that has the museum?
Jonathan: Yes, I think so.
Bonnie: That would be so cool to visit. Doesn’t the Nfb National Center have something?
Jonathan: They have the international Braille and technology center, and I don’t think they would like it being called a museum as such, but they do have a very wide range of technology, which is plugged in and working and you can go in there and look at it all. Yes, pretty amazing.
Bonnie: Yes, but it is interesting to see all the things because he was talking about the Braille embosser, different machines, and it does make you– One thing it really reminds of the human spirit over adversity, that people somewhere in the world are going to try to find a way. There’s evidence that guide dogs were used in ancient times from paintings and even some cave dwelling. Humans have always come up with a way to get around something if they’re ingenious enough. It’s really cool.
Jonathan: It is a bit of a brain breaker to think that we had a reading machine for the blind over a century ago. That was a very interesting interview to do.
Bonnie: Never knew it. I can just imagine them, and it was talking about doing all the little performances, taking– Was it Margaret? Was that the girl’s name?
Bonnie: Going around to the different things, and I can just see it in my mind, like a world’s fair, one of those expos. “Go see the blind girl read print.”
Jonathan: Yes. Now, you had another guide dog refusal. You’ve actually had a couple of guide dog refusals for the same reason in the last little while. I just want to raise this again because as far as I’m concerned, if you are a taxi driver with an allergy that prevents you from taking a dog, that disqualifies you from being a taxi driver.
Bonnie: Yes. There genuinely are people who are severely allergic to dogs. My understanding is that the majority of the time, it’s not a life-threatening allergy, and I guess maybe I sound cynical, but I don’t believe a lot of the drivers when they say they’re allergic. There can’t be that many people allergic to dogs. I do think if you’re going to work in a public space, if you’re going to drive, particularly then that should disqualify you.
Jonathan: There seems to be a trend now where people are providing documentation. “Yes, I really am allergic to dogs.” This is a new thing, at least in New Zealand.
Bonnie: You can get documentation for anything. A friend of mine used to work in reasonable accommodations. She said she was shocked at what you could get a doctor to sign off on, which I think it cheapens what people who legitimately have disabilities. People faking disabilities is not good, and medical professionals that are signing off on it.
Jonathan: In your case, you were heading to work, you had somewhere to be, you had appointments, you had commitments, and so they send you this driver who alleges that they have a dog allergy, and then you query “Well, is it documented?” and they say, “Yes, it is.” Apparently, as a paying customer, as a passenger, as somebody who needs to use the service, somehow your rights take second place to this individual. It’s a crazy situation.
Bonnie: Yes, it is, and you’re seeing it more and more. I don’t believe it. I’m sorry. I’ve seen too many where it’s fear or they just don’t want to take the dog. That’s not trying to minimalize people who are allergic to dogs, but it just seems like it’s used a lot as an excuse. If it’s a work situation, if you’re actually in the workforce with someone who’s allergic to dogs, then you try to work around it, because both if it’s a documented disability, then you have to come up with a workaround.
Jonathan: Right, but it would be like me as a blind person getting upset because I applied for a job, say, as a courier, where I have to drive around and deliver packages. Now, me being blind means that I can’t have a driver’s license and I can’t do the majority of what the job requires me to do. Therefore, I’m not able to do that job. Now, as far as I’m concerned, the same is true of people with allergies that prevent them from taking guide dogs. You are required to take guide dogs in your job, that’s what the law says.
Bonnie: Yes, but they claim, “Oh, this needs to be on file.”
Jonathan: What needs to be on file?
Bonnie: The fact that I’m traveling with a guide dog.
Jonathan: No, it doesn’t. You aren’t required to disclose. They are required to provide you with the service. You should think about taking it to the Human Rights Commission.
Bonnie: Yes. The first time I had the guide dog refusal with the cab, when I called and spoke to a supervisor, he kept referring to it as a blind dog. That really angered me. I said, “Look, it’s not a blind dog. The dog’s not blind. I’m the one that’s blind. If she were blind, we’d be in trouble.” I’m like, “What kind of stupidness is that?”
Jonathan: All right. Well, thank you very much for another tremendous Bonnie Bulletin.
Bonnie: Thank you.
Jonathan: We look forward to next week. Of course, this weekend, we’re off to see Lizzie the Wonder dog in Whanganui, your previous guide dog. She’s 14 now, right?
Bonnie: She’ll be 14 next March.
Jonathan: Next March?
Bonnie: Yes, she’s 13.
Jonathan: She’s just turned 13?
Bonnie: She’s just turned 13, yes.
Jonathan: It’s been a while. We haven’t seen Lizzie since you retired her 20– Was it ’18?
Bonnie: No, 2019.
Bonnie: Yes, so two years now.
Jonathan: It all gets a bit of a blur after a while.
Bonnie: It does after a year of pandemic.
Jonathan: Yes. [laughs] We’re looking forward to seeing her. It’ll be interesting to see how she reacts to seeing us, especially you.
Bonnie: I wonder if she’ll remember us.
Jonathan: Because when we went into your old work in Boston, she knew exactly where she was and took you to your desk.
Bonnie: She dragged me to my desk.
Jonathan: Yes, like, “I know this. I know this.”
Bonnie: Then she was shocked someone was sitting there. [crosstalk] “Maybe we went on a really long lunch break.”
Jonathan: Yes. [laughs]
Bonnie: She wanted to go on the train. When we got out of the cab, she wanted to make a B line to the subway.
Jonathan: Or a T line.
Bonnie: T line to the subway, yes.
Jonathan: All right. Goodbye.
Jonathan: We’re going to be talking keto now and I don’t mean the capital of Ecuador. Although I did use to listen to HCJB, the shortwave station in Quito, Ecuador. Now, we’re talking about keto, short for ketogenic eating. David is in touch. He says, “Hello. Keto does work as you can vouch for yourself. I have lost 20 kilos already and have another 7.5 to go.” Congratulations. “After five months, I am finding the diet a bit trying. I ate a hamburger last week, a bacon cheeseburger double meat. I know I must be careful not to be a cabbie anymore.
Today, I had a rice dish. Someone told me I could have a cheat meal at times. I have found lovely alternatives to sucrose, including allulose, xylitol–” which is spelled X-Y-L-I-T-O-L, “And monk fruit. I do not find that I am crazy about cauliflower rice, but the vegetable does work in pizza crust decently well. I love heavy cream from A2 milk. I have found some alternative drinks, including herbal tonics by Goldthread and some of the less sweet teas by Honest Tea. Haha, Honest Tea, that is such a cool brand name. I wish I’d thought of that.
I wonder if they’ve got ads that go, ‘Honesty is such a lovely drink.’ I have even tried keto salts, a powder you mix in water. Nasty,” he says, “And ketone esters, a liquid you drink two ounces of at a time, nasty too. The ketone esters cost about $100 a quart, so I won’t be doing that again. I think it helps some. I wanted to ask you if you ever hit a plateau with your weight. I had been losing decently well weekly some 2.5 pounds or a bit over a kilo to you, but for the past two weeks, I have jumped around 185 pounds to 182 pounds over and over again.
I know not to give up, to continue my treadmill and just keep on keeping on. Did that ever happen to you? I think after I get my goal of 168 pounds or roughly about 76.5 kilos, I might explore the friendlier Mediterranean diet. I find keto hard, but can certainly say it works well. I’ve also used the one-ounce packs of MCT oil. I’ll put it on lots of different foods. You can’t really taste it. Have you done a complete discussion of your keto lifestyle on one of your podcasts?
I have so many things to listen to and to do, I get so behind and overwhelmed by books, podcasts, and such that I get lost. I’d be curious to hear what you eat on a weekly basis and your favorite keto tricks. I like eggs, cream, butter, various meats, though I hear one can now be ketotarian or paleo vegan, cheese, walnut butter, avocados, olive oil, and even almond flour bread. Coconut flour is not my favorite, though.” Congratulations on your weight loss, David. A couple of things.
Yes, in Episode 58 of Mosen at Large, we devoted the whole podcast to ketogenic living. If you haven’t heard that yet, you might like to take a listen. In terms of what I eat, I went through a phase when I was transitioning, where I did feel that things like Atkins bars and shakes and some of that processed stuff was helpful. Now I’m at the point where I’m more keto paleo. I try not to eat any processed food. The hardest one for me to give up was cheese, which I actually found was stalling my weight loss. I don’t really do a lot of dairy anymore.
I’m eating a lot of fresh food. We get a service delivered to us called Muscle Fuel. If you’re in New Zealand, which I know you are not David, but we’ve got podcast listeners here in New Zealand, and you’re interested in the keto lifestyle, check out their keto meals at Muscle Fuel. They’ll deliver them to you. We get evening meals delivered for weeknights when both Bonnie and I are home and don’t want to cook. That takes care of our meals. They are fresh, they’re delivered fresh, they’re not frozen. They’re all natural ingredients. It’s really good. I’m sure there are services like that in the United States.
I am now over the whole substitute things. I eat cauliflower rice. Muscle Fuel uses that sometimes, but I don’t go out of my way. I don’t feel like I need to have something that slightly resembles bread. I’ve just kept bread out of my diet. Absolutely, I’ve had a keto plateau, where you’re really close to your goal weight and things just stop. I actually consulted a keto expert, who is one of the top authors on keto, who happens to live in New Zealand.
I made an appointment with her and had a chat. She said, “Look, when you get to the point where you’re really close, you do probably start to need to look at your calorie intake as well.” I know that Atkins and some of those diets are suggesting don’t count your calories, and that’s quite attractive, especially initially, because just adapting your body to keto is going to make a big difference initially. As you get closer, you are going to have to start thinking about not just what you’re eating, but how much of it you’re eating, and that may well help you with your plateau.
One thing I’m pretty confident of, though, it’s unlikely that if you start eating really starchy stuff like rice, that that’s going to do you any good at all. For me, the keto thing is not a temporary thing, it’s not something I’m doing and then I’ll change away from, it’s something that I know is really good for me. I’m firing on all cylinders. My brain is hopefully in really good shape. I’ve never felt better, so I wouldn’t want to deviate from it long-term.
Now, that’s not to say that every so often, I don’t make a conscious decision. Maybe after having a few days of craving that I am just going to have a day where I completely go off the wagon. We’re only human. The trick is to just do that consciously and not say, “Oh my goodness, now that I’ve done this, I’m worthless, there’s no point in going back to it.” If you’re going to have a day where you just have to get off the wagon, then get right back on the wagon again after you’ve had that day.
The other thing that I think is really important to do is to try not to do that when you’re under stress. If we get into the habit of using sugary processed starchy foods as a tonic for a bad day, then it becomes a license to get that weight back on because we’re all going to have bad days, we’re all going to have days where we’re stressing out, and if we think the stress has entitled us to go off the wagon, then it’s really hard to break that mindset.
I think mindset has a lot to do with getting those last few pounds off. If you haven’t tried it yet, another thing you could look into is intermittent fasting, and this can be enough to just give your metabolism a bit of a jolt and get those last few pounds off if you haven’t been doing that already. There are various ways that you can do this. You can just get into the habit of not eating until midday or so. I did that for a very long time. My last meal would be about 5:00, 5:30 at night, and then I will need to get until midday, and I would only eat within a six-hour window. That really helped me a lot.
Some people go on fast for a few days, making sure that your water intake is good, of course, and that you’re also taking electrolytes, which is really important. Every summer, just after Christmas, I go on a fast for three or four days, at least, where that’s all I do. I just drink water, maybe a bit of tea, and make sure I keep my electrolytes up, and I don’t eat for days and I feel fantastic when I’m done.
You could try that. You could look into fasting. There’s a really good book that was done by a bunch of New Zealand authors, one of whom was the person that I consulted about my plateau, and the book is called What The Fast. They also did a book called What the Fat and they’re probably available worldwide, I suspect. Don’t discount the progress that you’ve made, celebrate it. It’s really great that you’ve done all you have. I wish you luck with the rest of it.
I love to hear from you, so if you have any comments you want to contribute to the show, drop me an email written down or with an audio attachment to jonathan, J-O-N-A-T-H-A-N@mushroomfm.com. If you’d rather call in, use the listener line number in the United States, 864-606-6736.
[music] Mosen At Large Podcast.
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