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Jonathan Mosen: I’m Jonathan Mosen. This is Mosen At Large, the show that’s got the blind community talking. On the show this week, reactions about an interview with Shermeen Khan about whether blindness as your dominant culture, and Leona Godin, author of There plant Eyes: A Personal and Cultural History of Blindness. As always, it’s a pleasure to be with you. We’re at Episode 142. If you’re just discovering the podcast, there is a veritable treasure trove in the archives for you to explore. I hope that you will do that after listening to this week’s episode. Looking forward to introducing you to Leona Godin a little bit later, who is our featured guest.
I think this is probably the longest interview I’ve ever done, but once you get into it, you will understand why. A few things to cover before we get to talk with Leona. You may remember that back in Mosen At Large Episode 107, I spoke with Amanda Gough. Now, Amanda happens to be my kids’ wonderful mom, and she’s also an educator of blind and low-vision children. She’s always taken an interest in blindness issues. She’s one of those sighted people who really gets it. She’s doing her master’s thesis at the moment. She’s hoping that Mosen At Large listeners, particularly those who enjoyed her discussion in Episode 107, about whether there is such a thing as a blind culture might be willing to help her out.
You don’t have too long to do this, only a few days. If you are willing to help her out, you might like to stop listening to the podcast and complete the survey, which she will tell you about in her own words in a moment. I must say I found the survey more challenging than I was expecting. I’ll explain that in a moment. I’ll read you what Amanda has sent in. She says, “Over the last 30 plus years, I have had the privilege of living, working, and mixing closely with members of the blind community. I have been fortunate to meet with a wide variety of blind people from all walks of life and all corners of the globe.
Consistently, I have observed “listening skills” being used to achieve a multitude of tasks for which sighted people would typically use vision. I have gained insight into the importance of sound for blind people and to the passion with which so many value the independence and enrichment that listening well can bring. Currently, I am conducting a research project on compensatory audios skills and knowledge with an emphasis on working out how we ensure that blind and low-vision learners aged 0 to 21 years are able to maximize auditory learning opportunities in order to gain the compensatory audio skills that will maximize their access to and knowledge of the world around them.
I am looking for anyone with an interest in compensatory audio skills from the following groups to participate.” Here we go with a list of bullet points. “Individuals with a lived experience of blindness or low vision. Family members of blind and low-vision learners. Teachers and associated professionals of blind and low vision learners with an interest or expertise in this area. Orientation and mobility professionals with an interest or expertise in this area. Independent living skills and other rehabilitation professionals working with blind and low-vision individuals with an interest or expertise in this area. Please note that you must be over the age of 16 and not a student currently on the BLENNZ, Blind and Low Vision Education Network of New Zealand role.”
That’s what Amanda has sent in. If you would like to complete the survey, I know she would really appreciate it. She’s looking for a wide range of perspectives. You can do that by choosing the link from the show notes. Now, if you have difficulty accessing the show notes, I have created a Bitly link to this, so that hopefully I can dictate it to you, and you can type it into your browser’s address bar. Bitly is a URL shortener. If you want to complete the survey, all you have to do is go to the address bar of your browser of choice and go to bit.ly/blindaudio. That’s B-I-T dot L-Y/blindaudio all joined together. The survey is done in Microsoft Forms, and it’s really accessible.
At least if you’re coming into this on a Windows computer, I would recommend simply tabbing around. Because every time you tab, you’re going to put focus in the next edit field or checkbox, and the prompt, the label, is spoken beautifully. It’s a very accessible survey. I did find it harder to fill in than I thought it was going to be only because I think we as blind people do these things without necessarily thinking about what we’re doing. It’s just a part of who we are. When you have to take it apart and think about it and explain it to other people, it’s surprisingly difficult. Give it some time, but I know that she would appreciate you filling it in.
You don’t have to complete all the questions if you don’t want to. If you feel you don’t have anything to contribute on certain questions but you do on others, then please feel free to just complete those questions you have a desire to fill in.
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Some listeners have written in responding to the interview that we had on last week’s Mosen At Large with Shermeen Khan. Including John Wesley Smith, who said he really enjoyed the interview and thought it was thought-provoking. Pete says, “Hi, Jonathan. Firstly, thanks for being so polite about the possibly massive typo in my message last week.” Oh, that’s all right. “I have bottled it this week and reverted to the good old keyboard. I wanted to thank you for the really thought-provoking interview this week.” This is the one with Shermeen. “I have been giving blind pride, et cetera quite a bit of thought since you raised it.
I have always been visually impaired but for most of my life, I was partially sighted. Everything I did was “sighted.” As a young adult, I was pretty insecure about my sight. I would do pretty much anything I could to “hide” the visual impairment and to prove I could do anything my fully sighted peers could do. After having attended a school for the visually impaired, this was pretty crushing because I really had no idea how partially sighted I was and how fast my sighted colleagues at work could complete tasks. I got by, but the stress was pretty soul-destroying at times. A huge part of it was, I am ashamed to admit, feeling less acceptable to prospective partners.
It took me years to figure out that although I could see a person, I could not see their eyes and couldn’t get the look in their eye. Meeting my partner who was sighted but has faced her own challenges was my turning point, but not for the reason I thought. She is very much of the opinion that you must do what you need to do. Most people are not staring at you or thinking less of you. This firstly got rid of my phobia of going to new places I have not been to before and to ask for assistance. When my sight worsened to its present level, I can see very blurry things but no fine detail, or often people or things in front of me as my contrast perception is very poor.
I was very surprised at my own reaction. The fact was, although I did have a few moments of feeling pretty sorry for myself, they were few and far between. It was just a new challenge. I pretty much threw myself into learning assistive technology. I’d used Dolphin SuperNova before but never JAWS. The pandemic actually helped me here because during lockdown, I couldn’t get to work and was not provided with a work laptop. I did complain fairly loudly about this. As I got paid, I admit, I eventually decided to use the time to improve tech skills. The free license offered by Freedom Scientific meant that I could use JAWS with no restriction.
By the time I got back to the office, I was fairly proficient. I could also refine other skills and research different technologies. For me now, I can’t hide it. I have no problem being blind out and about. My son says he doesn’t like the fact that some people stare, but I have mentioned to him several times that I can’t see, so don’t care. Equally, some people are rude. Others are simply fascinated at how a person with little vision can get about. Most people I have encountered are terrified of offending, so either don’t mention it or skirt around the matter. I will therefore generally raise it straight away, and point out that although I am blind, I don’t have a God-given right to the town, and all I actually need is for someone to step aside or just warn me, so I can do it instead.
I am pretty good at being aware of my positioning, so stepping nearer, for example, a road is not often a concern, provided I am given the time and space to find the curb with my cane. A person I met was fairly shocked that when offering some assistance through some scaffolding, I declined and said, ‘If I don’t find my own way myself, I’ll keep having problems each time and someone else might not be there or willing to assist.’ I think they got it. Change hearts and minds one at a time has become the mission. I can’t say I am proud to be blind as such, but I am proud that I am a better person for it. Less judgmental, more open to new ideas, more widely read, better with touch and probably braver.
We do have a huge amount to be proud of but is it being blind or because it doesn’t stop us. We don’t bleed or attend the pity party like other people seem to think we should. We get on with it, we hit a problem and either work around it or point it out. In short, I am happier in my own skin now than I ever was as a partially sighted person who feels they didn’t fit in either sighted or blind camps. Guernsey is going through the process of getting disability discrimination law put in place at last, and it is being fiercely resisted by wealthy business people. I do think the elephant in the room here is accommodation.
My work is about to spend nearly £6,000 pounds scripting their systems to work with JAWS. This is a hefty price tag. However, I have pointed out that while grateful, if the software was written to be inclusive, the cost would not be there. I am encouraged that more and more companies are embracing universal design. However, for me, this is the big issue because we can’t choose the systems we work with. I am hoping that in the coming years, assistive and mainstream companies will come together, so that things like indoor navigation and touchscreens will have a standardized way for individual assistive tech to interface so that we bring our accommodations with us and so does everyone else.
Rather than trying to build for every last possibility that might finally stop things like your washing machine debacle. I had a similar issue that we needed a new tumble dryer. We went for Bosch as their app, Home Connect, had a demo mode, so you could try before you buy. It’s not perfect, but it does work. It also works with a soup drinker. While loading the dryer, I usually end up telling the echo what program I want rather than using the app. On the subject of Braille inputting, do you or any listeners know of any programs to improve typing on a Perkins style keyboard, much like typing tutor programs, I could do with this as I am getting better, but still mess up contractions quite often. Once again, thanks to you and your guest.”
Thank you, Pete, it’s really great to hear that you are feeling more comfortable with yourself and in your own skin. You’ve made me think though, I really need to ask my kids whether people stare at us when we are going out. I’ve never really thought about it because I don’t care. Like you are now, I just don’t care. If people want to stare, let them. It’s a shame that they don’t have anything more interesting in their life to look at. Just to clarify the issue that Bonnie and I had with our washing machine was not assistive technology-related at all. It wasn’t that the app was inaccessible, it was that there was some weird connectivity issue, which would have affected us whether we were blind or not.
It was just one of those really bizarre software update problems that broke a smartphone app, but we are rocking it now, and we’re really enjoying the Samsung washing machine. I don’t know of any Braille apps that do the same kinds of thing as, say, typeability does for JAWS, which is a fantastic, fun, effective typing tutor from YesAccessible!.
I don’t know if there’s a Braille equivalent, if anyone knows, do be in touch, jonathan@mushroomfm.com on the email, you can attach an audio clip or write it down
Or call the listener line number 86460-MOSEN, 864-606-6736. Ali is in touch, and I hope that’s how you pronounce your name. Based on some things you’ve said in this email, I think it is. I hope I got that pronunciation right because I don’t like mispronouncing names. “Hi, Jonathan, hope you’re well. I found your last show to be very thought-provoking, but then there’s nothing new about that, so I thought I’d chime in with a few of my own thoughts on the blindness discussions of the week. By way of background my upbringing, in many respects is similar to that of Shermeen Khan, who you interviewed last week.
I am a blind Muslim who has grown up in a traditional South Asian family with many of the stereotypes we always hear about. As I grew up, I became very close to my religion but found I had nothing in common with my Indian roots, and I’m much more of a Britisher, so to speak. Regarding blindness, my views are markedly different to those expressed on the show last week. I take the view like many others who have chimed in over the last few weeks and months that blindness is not a source of pride nor is it a source of shame. Like Shermeen Khan said last week, it’s just there. It is a mere characteristic of which I have hundreds.
I am of average height and build. I have black hair and brown eyes. I am in my mid-20s, and I am blind. To me, being proud or ashamed of being blind would be akin to being proud or ashamed of any of the other characteristics I have just mentioned. Having said that, I would like to understand your perspective better. You gave detailed reasons why you were proud to be blind some weeks ago, but they seemed to me to center around other blind people and their accomplishments rather than blindness itself as a concept, or, as some would say, as a thing. I could also say things like, I am proud to be British because Britain has produced people like Lord Denning, who revolutionized legal change for underrepresented and vulnerable groups of people.
I am proud to be Muslim because Muhammad Ali was Muslim, but that doesn’t really make sense. Just because I was born on the same piece of rock as Lord Denning doesn’t mean I have anything in common with him. In all likelihood, I don’t, apart from the fact that we both entered the legal profession albeit about 100 years apart. Similarly, the mere fact that Muhammad Ali is Muslim and that he shares my name does not mean I have anything in common with him either. Yes, you are proud to be associated albeit by a disability to some great people. What has that to do with blindness itself? No doubt there are blind people out there who aren’t very nice.
Imagine if Pew from Treasure Island was real? We wouldn’t want to be associated with him now, would we? What I’m really asking is putting aside the blind greats we all know and love, why are you proud of the fact that you are unable to see?” That’s not all of Ali’s email, but I’m going to stop and answer this one first. I don’t have anything to add really to what I have already said and subsequently written. I note that in the July edition of the National Federation of the Blind Braille Monitor, they have printed my piece. Thanks, NFB for doing that. I’m glad that it has gotten so viral and resonated with so many people. I think that pride is a very personal thing.
If I were British, I would be very proud to be British, and I would be proud to be British because Britain produced The Beatles. I’d be proud to be British because Britain produced Monty Python and The Goons and given us a lot of great culture. There would be various other reasons why I would say that I was proud to be British. I’m proud to be a New Zealander because of the way that our Prime Minister handled COVID-19. We’re still COVID-free in this country. I’m proud because of the way she handled the mosque attacks and so ably de-escalated. New Zealand gave the world Sir Edmund Hillary, who conquered Mount Everest. It gave us the fantastic Black Caps cricket team. I could go on.
You can be proud of things that you are not directly responsible for. I’m very proud of my children. Now, I’m responsible for bringing them into the world, but I’m not responsible for what they as individuals accomplish. When I learn the things they’re doing and how well they’re doing in the world, it makes me immensely proud every day. I mentioned other blind people from the past and in the present for several reasons. The first reason is that I have come around to the view that we do indeed have a blind culture. As we’ll hear in a minute, when we speak with Leona Godin, who’s the author of There plant Eyes, it’s important that we understand our culture and that we celebrate it.
I really believe it’s important that we, as a minority understand our history. I don’t think there’s anything wrong with being proud of the culture that you come from. I also mentioned other blind people as examples of the fact that by virtue of being blind, we have made significant contributions to society, not in spite of it but specifically because of it. I cited examples, like the fact that we were using reading machines, which ultimately became the OCR scanners that many people still have in their offices, that we were using PDA technology in the 1980s before sighted people had them. We were keeping tabs on our calendars. We were reading ebooks back in the ’80s and early ’90s.
We were doing all those things. We contributed talking books, specifically because of blind people and blindness, we have made that contribution. We have made the world a better place, and blindness has been the reason for that. I’m at risk of repeating myself really in a different form. I encourage you to reread the piece because you seem to have got fixated with a couple of paragraphs. I also mentioned the pride that I feel in our success in a world that is constructed based on conditions of sight supremacy. I’m proud of the fact that being blind permits me to perceive the world in a different way, which may be subject to less prejudice. All of that is there.
The examples that I gave of individuals were really to illustrate some of these additional points. Now, if you don’t feel that pride, I don’t criticize you for that. It is very, very real for me. I am extraordinarily proud to be blind. In fact, the book that we’re going to talk about in a minute has made me even more. Ali continues, “On a related note, overcoming blindness as a thing was also mentioned on your last show. As a mere statement of fact, I have no problem with this. Overcome simply means dealing with a problem or difficulty. Most blind people overcome their blindness unwittingly every day. You and I, our uses of JAWS and Braille display, i.e, we overcome the fact that we cannot see a computer screen by using JAWS and Braille.
We overcome various navigational difficulties by using devices like the Victor Reader Trek, or in my case, taking the lazy approach and calling an Uber. Why shy away from it? Don’t you think doing so is hypocritical? Surely, we ought to embrace it and pat ourselves on the back for overcoming blindness each and every time we do it. I bet you’ve encountered many hopelessly inaccessible apps or websites, and find a way to accomplish what you need by jumping through various hoops, such as perhaps, the JAWS touch cursor or screen recognition on iOS. Finally, get it done or to put it another way, when you overcome the hurdle, which is ultimately caused by blindness.
We cannot simply say that website should have been accessible. Many developers, simply aren’t aware of the issues we are required to overcome.” I’m going to pause Ali’s email there and responds to this one. I disagree with you about what we’re overcoming in the examples that you cite. In the second BBC Radio series of The Hitchhiker’s Guide to the Galaxy, I can’t remember if it made it into any of the books or not, but I definitely remember it from the second series on the radio. There’s this great dialogue with a marketing executive, and the marketing executive sees somebody limping along and someone says, “What’s the matter with him? Why is he limping?”
The marketing executive says, “His feet are the wrong size for his shoes.” I think that’s a very relevant analogy to draw because we are not overcoming blindness when we do these things. What we are overcoming are the barriers that have been imposed upon us by a disabling society. If I do manage to get past inaccessible websites, I haven’t overcome my blindness. I’ve overcome the inaccessible website. We must not get into the victim-blaming. If we talk about overcoming blindness, in my view, what we’re doing is letting society off the hook and saying, “We are the ones with the problem.” We are not. The lack of accommodation is the problem.
To illustrate this point, I’m a lot more computer literate than most people. For that reason, I’m the family tech support person. Quite often, I get asked by family members to help them because their computer is doing something that they don’t understand or something like that. They are sighted people asking for help. We don’t talk about sighted people asking for blinded help in the same way that we talk about blind people asking for sighted help, do we? Some of us possess information that others of us need at different times. Now, it is true that as a blind person, some of that information I might require is visual, and somebody who can access that visual information can supply it to me.
Equally, if a sighted person asks me, and many do, for computer-related assistance, are they overcoming their sightedness by having me help them? No, they’re overcoming their computer problem. This is where your two things are interlinked, you see, because I feel about it this way because I am proud to be blind. I don’t see my blindness as a problem. It isn’t something that requires overcoming. Finally, Ali continues, “Lastly, my own personal opinion from having been brought up in the UK, being surrounded by many blind people and growing up alongside them, is that we are fighting the wrong battles.
I think the regrettably negative perception about blind people is caused by blind people. Most of the people I went to school with are on benefits, and though they are perfectly capable, have no intention of looking for work or aiming in any way to better the way we are perceived. One chap recently said something to me, to the effect of, ‘Why on earth should I work? The government is paying me £1,800 a month to sit at home.’ I have also regularly witnessed with anguish and dismay my blind fellows deliberately using blindness as a sympathy card to get by in life.
Imagine having to listen to nonsense like, ‘I really need extra time on this essay. I am struggling to find sighted help to look up all the references I need,’ or, ‘Can I submit this application form in text format, please? I will have to do it in notepad as I can’t use Microsoft Word without help.’ What are sighted people supposed to think under such circumstances? I think this is the biggest monster of a problem barring our path to salvation. I think we need to work together to get without it. As always, thanks so much for putting together an amazing show each and every week. I really don’t know how you do it.
Having listened to you since 2004, when I heard you on cassette demonstrating how to use a BrailleNote Classic, I expected the podcast to contain some great technological insights and ingots, but it is so, so much more than that.” Thank you for writing in Ali with a thought-provoking post. What I like about it very much is that we clearly have some different perspectives on these issues, but you are conveying your thoughts respectfully, and I’m doing my best to do the same. Long may that continue. I’d like to think that this is a tenet of this podcast that we can maintain.
Regarding your final comments, I’m wondering if you might be a little bit harsh here. No matter what the system is, no matter who we are talking about, there will always be people who’d game the system. Whether they be people who perhaps aren’t pulling their weight when it comes to getting off a benefit or off state assistance or whether it be the wealthy business person who’s trying to find some way to not pay their fair share of taxes. Most people are decent people. You always get people who want to game the system no matter who they are. I don’t think that that accounts for the enormous unemployment rate in our community.
If I were to pick one problem that we have, it’s other people’s perceptions of us, and we’re not going to change those perceptions unless we can front unconscious bias such as that which is encouraged by pejorative use of blindness terms. I think that is our biggest problem. Regarding the Microsoft Word example you cite, there are people who genuinely have fallen through the cracks. I count myself very fortunate that I find assistive technology very intuitive, but not everybody does. It’s not necessarily their fault. There are going to be people who do need a bit more hand-holding than others. I don’t think we should judge them for that.
If they have had the opportunity to learn about Word and they choose not to, that is a foolish decision. I don’t think there’s any way of sugarcoating that. The majority of the world uses Microsoft Office. Some of the world uses Google Docs and those related apps. It’s a good idea to be conversant with those if you are job hunting. I get that. There are a lot of people that I come across, who for whatever reason, just didn’t have the chance to get the training that they so desperately need. I like to give my fellow blind person the benefit of the doubt wherever I can. While there are bad apples everywhere, I think that the majority of the problems we face are not caused by people ripping the system off.
Speaker: What’s on your mind? Send an email with a recording of your voice or just write it down, jonathan@mushroomfm.com. That’s J-O-N-A-T-H-A-N@mushroomfm.com or phone our listener line. The number in the United States is 86460-MOSEN. That’s 864-606-6736.
Jonathan: Only once in my life have I ever finished reading a book and then immediately begun reading it a second time. It only happened in the last month. The community that we’ve built around this podcast has debated blind pride, how most sighted people perceive us, and how it requires incredible tenacity for those inaccurate perceptions not to affect the way we perceive ourselves. I’ve also talked with pride about the considerable contributions blind people have made to the world, not in spite of blindness, but specifically because of it. I’ve thought about those issues all my life. I don’t really mind or care whether others share my views or not.
At least, that’s what I thought until I read this remarkable book. This book evoked so many powerful emotions for me. Parts of the book brought out the blind pride I am already bursting with. Other parts made me feel sad and frustrated and determined to do what little bit I can to make things better. Unexpectedly, the book made me cry. I wasn’t crying from sadness. I cried because I was reading the articulate, scholarly, very real writings of someone on the other side of the world, whose journey was very different from my own in many respects but who ended up at the same destination, a blind person championing their blind pride, calling out the inaccuracies and inconsistencies and the way blindness is perceived and portrayed, believing with optimism that something better is possible, realizing that it’s up to us as blind people to grab that better future.
It was almost uncanny to have my own philosophy reflected back at me by this book. I cried because I knew someone else gets it. The book is called There plant Eyes: A Personal and Cultural History of Blindness. Its author is Dr. Leona Godin, and she joins me now. Hi, Leona, good to have you here.
Leona Godin: Hello, you made me get a little weepy eyed there. Thank you so much for that beautiful introduction. It makes me so happy.
Jonathan: Your book cleverly interweaves your own personal story with a history of blindness, but I’d like to talk first about your own journey. You were misdiagnosed as a child, but it actually took your mom a lot of effort to even get a diagnosis.
Leona: Yes. This was a long time ago, and I think that doctors were uncomfortable with not knowing. It took about a year of me visiting lots of different versed optometrists and then ophthalmologists, who really started making things up. Like, “Her eyes are growing too fast for her body.” [chuckles] A very astute medical diagnosis there. Finally, we saw so many doctors. We finally were up at the Letterman Army Hospital Research Center that’s in San Francisco, the now defunct Presidio. Finally, this doctor was so frustrated, he said, “Maybe she can’t see because you’ve been taking her to so many eye doctors.” My poor mother was, “Why can’t she read the writing on the blackboard?
I think visual impairment was not in the conversation as it’s so often is not in the conversation. I think because degeneration was so slight at that time, it felt like nothing to them. Yet, they were frustrated because they couldn’t bring it. It was like 20/60 or something, and they couldn’t bring it back down to 20/20. Finally this ophthalmologist looked again, saw that it was retinitis pigmentosa. Although, it turns out that it seems like retinitis pigmentosa is more like a complicated array of retinal degenerative diseases. Mine really presented more like a cone-rod dystrophy. I lost my central vision first. It was a long haul to getting a diagnosis, but even that diagnosis was a little bit misleading.
Jonathan: It’s common for people with a gradual sensory loss to cling on to what’s perceived to be the “normal” way of doing things. Your story isn’t really unusual there. What does interest me is that it seems that quite early on, you were fascinated by literature about blindness. You’re obviously a book nerd in general. Is that the case that you got into reading literature about blindness quite early?
Leona: I did. Quite early as undergrad in college, which I think it is, now many decades passed. It was interesting because I certainly didn’t perceive myself as being a blind person. I was always a visually impaired person, and it’s really only been in maybe the last 10 years or so that I’ve called myself a blind person and have had basically no sight for the last maybe 5 to 10 years. When I was visually impaired, there was a lot of shame, a lot of trying to pass as sighted. Not that I didn’t talk about it. I was okay to talk about it. I wasn’t trying to hide it exactly. It was just something about the things that I couldn’t do. At that time, getting books was so difficult. God bless the ebook. You know what I mean?
Now, I can get every book. Speaking as a book nerd, I can get pretty much any book when it’s first published, but that certainly wasn’t the case back in the ’80s and ’90s. There was a lot of shame involved, I think, in that visual impairment. When I stumbled upon the classics of all things at UC Santa Cruz, because I’m a bit of a masochist, I decided to take Greek and Latin. [chuckles] I was using a CCTV. My housemates and stuff would say they could see my Greek texts floating across the CCTV in giant 2-inch letters, but they couldn’t read it because it was ancient Greek. [chuckles] It was interesting because of course I knew about Homer as I was studying the classics.
It was really this tutor that I had that was helping me out that with the Greek and Latin. He said, “Did you know that the Greeks revered the blind as poets and prophets? It was a very distinct memory because it was he was the first person that was somehow in a subtle way making a connection between my visual impairment and this long legacy for better or for worse of the blind poet prophet. It was interesting to me for two reasons. One was that here seemed like that classic idea of compensation. The idea that the physical eye is not working so well.
You have a direct line to the gods or the muses. On the other hand it was like, “I’m also dealing with these practical difficulties.” It really opened up what I’ve been doing pretty much since for the last 30 years through art and writing is trying to negotiate those idealistic symbolic or metaphorical ideas of blindness with the realities of blindness.
Jonathan: As a book nerd, reading about blindness and knowing that your vision is going to deteriorate further, it must be quite confusing because on the one hand, you’re being told blind people are just these super beings and have all sorts of incredible powers. On the other, you can find so much literature that essentially says that if you don’t have sight, you really aren’t going to amount to much.
Leona: Yes. That’s really what There plant Eyes is about, is negotiating those incredible extremes of the blind poet prophet or these days more likely the superhero on the one hand and this pitiable spectacle, the blind beggar or buffoon used for comic effect on the other. Really trying to fill in that vast in between that most of us blind people live in as normal blind people. I think just that very term, normal blind people is something that’s– it gives a double-take for sighted people. That it’s always about the abnormality of blindness and not just the everyday life, and that there’s very little literature about that, the idea of just being a blind person going about your day.
Jonathan: Oscar Wilde has so many pithy little quotes. One of the things he said was that life is a comedy for those who think and a tragedy for those who feel. Just reading your book, it occurs to me that you both think and feel about things quite deeply. How did this affect your perception of what you could become or what would become of you as a blind person growing up, a visually impaired person growing up reading this literature?
Leona: There’s two parts. That’s a great quote by the way. So much has happened over the course of the last 30 years in terms of technology. I think so much of the shame that I felt as a visually impaired person had everything to do with how inaccessible books were because I lost my central vision first. I couldn’t read standard print from pretty early on. At that time, people didn’t really push people to learn Braille if they were visually impaired, if they had any sight. Usually, it was large print. Of course, I also was a little bit worried about learning Braille because, again, I didn’t want to be identified as a blind person.
Also, once I did start to learn Braille, I felt like, “Wow, I can’t get any of the books that I actually want in Braille.” At that time getting books from the library for the blind was quite limited. Really changing my perceptions of what it means to be blind to it has a lot to do with technology, which is why your show is so great, one of the reasons. [chuckles] It also had to do with using the stories that I would find about blind people as inspirations for art and my academic world as well. Being able to find these interesting stories that are about blind history and seeing how they were woven into the history and the literature at large was a major factor in changing my perceptions about myself and my own blindness.
Jonathan: We’ll come back to what I would describe as a bit of a road to Damascus experience that you had with Braille a bit later. Just going through the chronology a little, you dropped out of high school and eventually, you took up education again later. Does that mean that the system just failed you?
Leona: The system failed me, for sure. I was really lucky. I went to a great grade school, but it was a small school. It was an all-girl school. I was a scholarship child, but I knew all of my friends for years, all the teachers were very close. When I first started losing my vision, they could accommodate me. There was no infrastructure there or anything. Then I ended up in a public high school after that. There was no help whatsoever. I don’t know how I knew. I think on the one hand I was a rebel and I was like, “I’m too smart for the stupidity of high school.” At the same time, I wasn’t getting any help. It was pretty much right smack in the middle of high school that the last of my ability to read went away.
Because for a few years I could struggle through. I think it was a friend of mine actually that dropped out of high school, and then went straight into City College of San Francisco. I was like, “Maybe that’s the answer.” I really dropped out of school, but I didn’t really miss any school. I started up the very next year at City College of San Francisco. For the first time, I got connected with books on tape, I started getting help from the disabled student services. It really all started with actually dropping out of high school was probably a good move. My first year in City College was basically my senior. It would have been my senior year of high school.
Jonathan: Yet at that time, if I’m understanding what you’re saying in the book correctly, you were still trying to function as much a sighted person as possible hiding those alternative techniques wherever you could.
Leona: Yes and no. at that time I didn’t need any help getting around at all because I had all of my peripheral vision. It was really about reading. Yes. In this way, is that once I started getting connected up with books on tape, on the one hand, it was wonderfully liberating. I wasn’t struggling to read every page and every word and then finally not able to do it anymore. The books on tape were wonderful. At the same time, I was very embarrassed about them. You’re absolutely right. I completely hid the little plastic blue boxes that came from, at that time, Recording for the Blind & Dyslexic.
Even though I felt myself to be a reader, I wasn’t able to access the books that my friends did. I couldn’t trade books and things like that. That, I was very embarrassed about, but again, I had this weird anomaly where I was fine to tell people about my visual impairment. I just didn’t like them to see it. Basically, it amounts to the same thing in the end. [chuckles]
Jonathan: Was there a tipping point for you then? Was there a pivotal moment where you stopped resisting your declining vision and became embracing or celebrating of your blindness?
Leona: I think it had everything to do with embracing it as an academic first and then as an artist. I’ll say that it’s a progression. I think I’m still working on it. I am very much with you on this whole idea of blind pride. I feel like, “Why would we not feel pride? What’s the alternative?” Again, like you’ve been saying, trying to look sighted, it’s just not good for us because then it keeps us from embracing the technology and the skills that we need. A big and difficult issue with a lot of people like me who lose their sight very slowly is that the trappings of blindness are so stigmatized, and we were raised as sighted people.
Even congratulated of like, “Oh, you don’t look blind,” where you’re supposed to say thank you. What a terrible message right to give us all as becoming blind people, I suppose, is the longer you can hold out looking sighted is obviously very dangerous. I’ll say this as many people, I think, that have a degenerative disease, “When do you pick up the white cane? When do you do it?” Because it’s funny when you have a visual impairment, there are many times when you can see perfectly well. It’s this odd thing of being able to be seen or see people seeing you as a blind person and how different they treat you and stuff.
I think that keeps us from wanting to whip out that white cane that is so useful that extends our ability to move through the world. It’s just a really hard thing to get over. I think adopting that white cane was a huge thing. A huge moment of saying, “This is actually moving people out of my way in New York city. I should really get behind it literally and figuratively.”
Jonathan: It’s breaking that perceptual cycle, isn’t it? The fact that we are bombarded by so many negative perceptions of blindness. It’s pretty heroic to shrug those perceptions off and say, “I’m blind. I’m proud of it. I deal with it. If you’ve got a problem with it, that’s your problem with it.”
Leona: Yes, it is hard. This might be part of why you’ve had many discussions about this, I think a lot of people say, “I don’t care that we live in an ocular-centric culture. I don’t care that the language seems to be sight-biased or sight-centric.” I think that the only way that we can really shrug off a lot of those perceptions– Not the only way, I should say the only ways are by, yes, embracing our blindness ourselves, stop worrying about looking sighted or trying to fit into the sighted world and realize that there’s so much wonderful culture and skills out there that we can not just be included in an ocular centric world, but shift the ocular centric world in our direction a little bit.
I think this is why ideas of inclusion can be dangerous because if we’re constantly worried about getting access to the sighted world, we’re not creating culture of our own that the sighted world could then participate in. It’s a one-way street in terms of inclusion. That’s why one of the reasons why I like to celebrate the idea of blind prides that we can actually shift mainstream culture instead of constantly being worried about being included in mainstream culture.
Jonathan: I like your term ocular-centric. I’ve been using sight supremacy, but yours is probably slightly more polite. What does blind pride mean to you?
Leona: Blind pride to me is about realizing that we have something to teach the world about our perspective and indulging in that as much as possible, both for ourselves as individuals, but also helping each other out. I think for so long, there was this idea that you can only have one blind person in the room. I mean that physically but also metaphorically. Say, there could only be one blind memoir that would be read every five years or so that would get a review in the New York Times or something like that. There’s something very divisive about that.
If we’re not creating a community that celebrates blind culture, then we’re in competition with each other in terms of mainstream culture. I think that this is probably true for a lot of different minorities. To me, blind pride is about lifting each other up, lifting all of us up together to, again, shift perceptions in artistic ways, as well as societal ways.
Jonathan: One of the things that we’ve talked about on this show, and I do try and understand other people’s points of view, even though I may not agree with them because I’m just curious like that. I like to think about the way others think, but the one thing I found it very hard to get my head around is that there are people who’ve contributed to this show who say that when someone says to them, “Sometimes, I forget you’re blind,” that’s a compliment. I don’t understand why that’s a compliment.
Leona: That goes right along with this idea of like, “Oh, you don’t look blind.” Then you’re knee jerk reaction, you’re supposed to say, “Thank you.” I agree with you completely. That’s basically all I can say. If we are so worried about not looking blind, we’re just not going to be the best blind people we can be.
Jonathan: I used to work on commercial radio, and it wasn’t often the case that my blindness would come up. Every so often, it was relevant, and I wouldn’t try to hide it. I remember one time mentioning this and the switchboard lit up with a bunch of people saying, “Wow, you don’t sound blind,” and I’m thinking, “How do they expect a blind person to sound?”
[laughter]
Leona: Oh my goodness. That reminds me one of the first pieces that I wrote that was in line style stylistically with There plant Eyes, it actually brought about the writing of this book in the way that it’s come about. I used to write a column called A Blind Writer’s Notebook. I just quoted in this first piece that I ever wrote for that it was actually called Cancer Versus Blindness. It was about being discriminated against in a doctor’s office. I mentioned this New York Times piece, I can’t think of who the author is right now, but she’s also written a book. She’s a teacher of the blind and visually impaired. She was at a party and somebody said to her “Oh, you teach blind children. How do you talk to them?”
[chuckles] She was like, “Wait a minute. They’re blind. They’re not deaf.” It’s like, “I know,” but still this woman was super adamant, like, “How do you talk to them?” I think that that’s so interesting that our ideas of sight are so powerful that it should make communication, which is all about the ear, somehow impossible. The assumption is that the only thing worthwhile talking about is things that people see. That’s the only thing I can think of that would make sense. Of course, that’s not true. It’s very interesting. Maybe we haven’t done a good enough job yet. I feel like we’re trying. I don’t know why the word hasn’t gotten out that we’re going to operate on a peril train.
It’s not going to be completely different. It’s not going to be completely the same. Those tracks will cross and diverge, and that’s what difference is all about. That’s what diversity is all about is the fact that there are differences and similarities, and that sometimes we’ll be able to communicate, and sometimes we’ll have to teach each other.
Jonathan: My own view on this is that we’re not going to make more progress until we have more blind people in what I call institutions of change, and particularly, that would be the media and governments and probably in literature as well because literature and culture has influenced perceptions so much. This is interesting. Where do you fit with all this? Because in your Plant Eyes, you mentioned the frustrations that some other blind writers and thinkers have experienced over the centuries, really, about being pigeonholed as writers about blindness and not having their opinions sought about other issues.
In fact, I was talking to a senior official in the New Zealand media about this recently, where I said that not only do I want to see much better coverage of disability issues, but also that we just need to have disabled people seem to be participating in the wider public discourse about all kinds of things, that disabled people are taxpayers and people with political opinions. They’re just not seen at least here on TV screens. Come to think of it, I watched quite a few of the US Sunday talk shows, and I don’t think I’ve ever seen disabled people on there either. Are you worried that in writing There plant Eyes, you’ve become a victim of that pigeonholing that you lament in the book?
Leona: I’ll tell you this. I knew that I didn’t want to write a memoir. I felt-
Jonathan: Thanks. [laughs]
Leona: -writing a memoir would be– There are so many memoirs that I quote in the book, and I love blind memoirs. A dear friend just had one published today. It’s wonderful. The problem is that I think that a lot of sighted people think that they can read this one blind memoir, and then it becomes representative. Because, again, you can only have one blind memoir every few years, otherwise, sighted people will lose interest or something like that. It was really important for me to bring together as many blind voices as I possibly could. I like to call it like a cacophony of blind voices.
Because I felt because there are so few blind people out there doing, as you say, creating the media, not just being the subjects of some inspiration porn story or whatever that, until we start making our own media, it seemed very important to me to pull as many threads as I possibly could to make it very clear that there was no such thing as a monolith of blindness. At the same time, what I would love is for there to be more own voices and even an interest in own voices authors to write novels. When was the last time you heard about a blind novelist as opposed to a memoirist. For whatever reason, there seems to be a lot of resistance there for us to be able to create our own characters.
Because we’ve been frankly caricatured for so long, and most of what decided people know about blind people are through the medias, through movies and novels, and who are those created by sighted people. It’s no doubt that there’s this huge disconnect between our lived experience and these representations that are in the movies and in our novels. Yes, I very much believe in an own voices movement for blind writers. Also, as you say, I think very importantly to have blind and disabled journalists out there writing our stories. In this day and age, I think you’d be hard-pressed to find someone that would be willing to write a story that was all about a given person of color from a completely white background.
We still are in this place where we have journalists reaching out to us that have never met another blind person and are going to write some story about technology or a cultural bit about some inspirational blind person. They just always feel very skewed because the journalist is trying to do two things, learn about this person or this technology, and learn about the entirety of blind culture all in, what did they take, a week to write something or something like that. I agree. We need more media makers that are blind and visually impaired and politicians. Everywhere, we need to be represented.
Jonathan: We have to gently insist on this. I had an incident last year on a board of an entity, I’m trying to be quite careful here, that I was interested in participating in. When they called for applications, they wanted people who were Māori, who are the indigenous people of New Zealand, which is fantastic because obviously, that’s an important perspective. They also in the same ad asked for people who had knowledge of disability. You see the distinction right there. That as long as you knew, “I’ve got a friend who’s disabled,” or whatever, and that was enough, but it wasn’t enough to say, “I’ve got a friend who’s Māori.” Why the double standard, why the hypocrisy? I actually pointed that out, and I went public with my concerns about it. Yet, people will say, “Oh, gosh, what a radical approach.”
Leona: What was the reaction? Did they–
Jonathan: The interesting thing about it was at first, they did not understand the point I was making. They did not see that they were being different, hypocritical about disability compared with indigenous people. It took me a lot of talking it through monosyllabically until finally, it clicked and they said, “Oh, okay, we see what you’re saying. We’re so sorry.” I actually said to them, “You really need to rerun the process. This process is a flawed process,” and they declined to do that, but they said they were going to do better next time.
Leona: Do you think it was that they were afraid to say disabled person or disabled people? Because I feel like there’s a lot of touchiness or fearfulness on the side of non-disabled people to use the term disabled. They want to say differently-abled or something. It’s like “Yes, that’s not a political group.” That actually disempowers us to say things like, “Oh, we’re looking for differently-abled people.”
Jonathan: In New Zealand, I don’t detect that so much. I know that there’s still evolving thinking particularly in the US where person’s first language is on the way out, but it’s a really slow process there. We’ve just gone lock, stock and barrel into calling disabled people, disabled people. We’re pretty chill about that. I think it was just that they genuinely didn’t see the distinction between asking for someone who directly lived the experience of being Māori versus somebody who just had knowledge of disability. They didn’t see the difference. We’ve got to point those things out or they will never change. It’s interesting about this pigeonholing discussion. I don’t know, have you ever come across David Blunkett in your research?
Leona: I don’t think I have.
Jonathan: He’s Lord Blunkett now. He was a senior cabinet minister in Tony Blair’s government. He was the home secretary during 9/11, so he was looking after the national security of Britain during 9/11. He’s totally blind, and he’s a guide dog user. Every time he changed guide dogs or the guide dog died or whatever, it was national news. It was great that he was in the House of Commons reading Braille. He was criticized for not doing enough for the disability community while he was on the way up and eventually in power. He makes the point that he didn’t want to be labeled as a single-issue politician. It’s certainly possible that he may not have had the roles he eventually did if he’d been more vocal and labeled as the disability member of Parliament. That’s the dilemma, isn’t it?
Leona: It Is the dilemma. What are we to do, but I think look to other human rights and other activists that have gone before us to see how it’s been done. I think there’s plenty of people who have been able to be very forthright about being a person of color, being able to say, “I have a lot of very strong opinions about how to raise my people and also, I can have a career,” that is not just that. I think that’s the danger is somehow this idea that you either have to leave your people behind and be that one inspirational figure to change things or the opposite, or you’re all about the blind issues or whatever the issues might be.
It just seems so strange to me. It’s like why can’t you have that be a very strong part of platform, but that not be all of you. I think, again, it’s all because or much of it is because blindness has seemed to be so othering, is the word. So othering that you couldn’t possibly have that as a strong part of your platform but not the all.
Jonathan: See, the big failure we made was that we never got Sesame Street to sing a blind person as a person in your neighborhood back in the ’70s. That would have done it. If we had a little song about–
Leona: It’s so true. It’s funny, I’m just reading Being Heumann, I’m not sure if that’s the way she pronounces her name, but by Judy Heumann about the activist, about the formation of the ADA, really, from the mid ’70s to 1990 in America. They were absolutely trying to– not even trying, but succeeding in making connections between the very recent memory of the civil rights issues. Her pointing out, again and again, “This wouldn’t happen if this was about a Black person at this time. I don’t know. In some ways it’s sad that we haven’t really gotten past, even with the ADA, we haven’t gotten past some of the issues that we had back in the mid ’70s or so. I think we just missed the Sesame Street boat.
Jonathan: Yes. I’m a firm proponent of making connections between other successful advocates for equality, whether that be the gay community. When you look at the turnaround that there’s been on gay rights in just the last 20 or 30 years, it is a remarkable story of successful advocacy. Also, obviously people of color, various things, we should learn their lessons.
I had a wonderful meeting some years ago now when I was doing government relations for the blindness organization here, with one of our great indigenous advocates. I went to her office; she became a member of parliament by that stage, she said to me, “Maori and disabled people have a lot in common because we are victims of people who think they know what’s best for us. We need to just assert our place in society.” She later went on to become a fantastic minister for disability issues in New Zealand.
She certainly proved the point, but it’s interesting about David Blunkett because I’ve said to people in Britain and maybe people listening might like to comment on this, “Do you think having somebody on the TV screens all the time in a senior position like that changed perceptions in general?” It doesn’t seem to. It’s like people see a successful blind person as some freakish anomaly.
Leona: That’s the danger, right? That’s the opposite of blind pride, right? In many ways, I think it’s the opposite or at least it’s so distinct as to not be useful, because there’s always that singular blind person, right? Helen Keller, Stevie Wonder, these almost superhuman blind people that seem to be so beyond the rest of blind people that it just doesn’t even count on some level. I think you’re probably right that those singular, super individuals don’t help enough. They just don’t help enough because we really need community rather than isolated superstars.
Jonathan: I’ve been telling everyone that I know that they have to drop everything they’re doing and read There plant Eyes. Every person that I’ve spoken to about this wonderful book does a double-take and they say, “What did you say it was called?” They say, “Why is it called that?” Now, people should read the book of course, but why is it called that?
Leona: There plant Eyes is a quote from Paradise Lost, written by blind poet extraordinaire, John Milton. He went blind in his early 40s, and it was probably a very good thing. I’m not being flip about that. He was very much embroiled in British politics of the mid 17th century, which were very fiery. When he went blind, he had to rethink. He was already a genius and spoke I don’t know how many, read how many languages, and had the education behind him, but he had moved away from poetry and deluged by these political agendas and stuff.
When he finally took it upon himself to pick up the mental or pick up the rubes of the blind barred and write Paradise Lost, a little poem of like 10,000 lines or whatever it is. He would dictate it at night and he would have an amanuensis come and write it out in the morning. There’s a really funny quote that apparently he would say, “I’m waiting to be milked,” by his amanuensis.
Jonathan: It was an interesting quote there.
[laughter]
Leona: Yes. In Paradise Lost, there’s a moment at which the narrator voice leaves the goings-on of hell and then returns to the goings-on in heaven. He makes this beautiful metaphorical turn in Book 3, where he’s moving towards the light. This is where he has this meta moment that seems autobiographical where he talks about reaching for the light but his eyes not being able to see it but that actually he can see better with his inner eye. Would you like the quote, the little passage?
Jonathan: I would love it.
Leona: Let’s see if we can– All right, here we go. [clears throat] Recitation mode. So much the rather thou, celestial Light, Shine inward, and the mind through all her powers Irradiate; there plant eyes, all mist from thence Purge and disperse, that I may see and tell Of things invisible to mortal sight.
Jonathan: Wow.
Leona: It’s this beautiful line that’s all about those metaphors that are useful. I guess this is where I really, in the book, skirt the line between saying, “Yes, these metaphors are powerful,” and there probably are a lot of things that one can see with any kind of different perspective. Blindness is one of those different perspectives. That idea of the internal eyes is a really powerful one. For Milton, he was saying “there plant eyes,” like plant them in your soul, plant them in the place that connects with the muse or that connects with the Godhead. However, you understand it.
It’s funny because even my editors at the time were like, “There plant eyes?” It’s such a strange construction that it baffles people, even they were like, “Can we put a comma after there?” I was like, “We can’t put a comma after there, we’re going to edit one of the greatest poets of the Western world.”
[laughter]
Leona: We had to fight for it is what I’ll say. People’s bafflement is like hard one, I should say.
Jonathan: I have to say the only books that I’ve ever written are boring technology books, but I imagine that everybody who writes thinks about the audience they’re writing for. Who were you writing for when you wrote this?
Leona: I think I was writing for the whole swath of what I like to call the sight blindness continuum. Basically everybody. I guess I say that because what blind people will get out of the book I think is different than what a lot of sighted people would get out of the book. I think that for blind people, it can be the beginnings for some to think about blind culture and to begin to construct some blind pride and to learn about our history, at least as I understand it. I would love there to be more books.
If there’s one criticism I’ve gotten in the press, it’s been, “Well, I wish There plant Eyes would have included other cultures,” and it’s like, “Please let’s have those books.” Let’s have these personal and cultural histories of blindness from a Chinese perspective. I think it would be a very different book. Basically, what I’m saying is that I love personal and cultural histories and I want more of them. You can only do so much in one book, for sure.
Blind people are going to get I think one thing out of this book, and I think I’ll have to quote a man named Jason Roberts who wrote a book called A Sense of the World that’s about James Holman. I did a conversation at a virtual bookstore called Book Passage in Marin County. I think he gave me my tagline, he said, “In many ways, There plant Eyes is a self-help book for sighted people.”
I think that’s it. I think it is it. It’s to teach sighted people a lot of things. Maybe the number one thing is everything that they thought blindness was is perhaps mistaken and that there’s as much nuance in blindness as there isn’t sightedness. I always like to say, “There’s as many ways of being blind as there are of being sighted.” Give us that respect right of individuality.
Jonathan: You mentioned blind culture a couple of times, it’s taken me a while to accept that a blind culture might exist. In fact, we had a really interesting conversation where my first wife who is sighted came on the podcast and essentially challenged blind people to embrace their blind culture. She’s also a teacher of blind kids and a really good teacher. She’s very observant. She’s doing a study right now on auditory compensation and things like that. It really got me thinking about blind culture. I now really am on board with the idea that we do have a blind culture but we’ve not embraced it as a blind community in the same way, say, that deaf people have their culture.
Leona: Yes. It was actually surprising to me to think about that. Maybe it was just simply in the writing of the book that it was like, “Wow, this is so obvious that this is about blind culture.” I’ve seen that as well, this resistance. I can only think that it has to do with that tainted quality of being disabled, of being a blind person that it maybe feels scary, again, because it feels like it might be too othering like as if you can’t participate in multiple cultures.
I think maybe there’s the problem right there. It’s like you can absolutely participate in blind culture and also, I’m Greek American, I can also be part of the Greek American culture, right? It’s not like it’s exclusive. You can participate in multiple cultures. I think, again, because we’ve been so afraid of looking like, acting like blind people that it seems scary to give in to an idea like blind culture, much to our detriment. I’ll keep saying it. You were saying about deaf culture. I think that for some reason people think that’s a given or something because you have a different language than you have culture.
I think there was just an article in the NFB pretty recently about this, about how resistant blind people have been to the idea of culture and it was like, “Well, there are things that blind people do that do seem to be about blind culture, but can you have culture without language?” It’s like, “Of course.” Black culture isn’t about language. Gay culture isn’t about language, it’s about so many other things, about the arts, about interpersonal relationships. Maybe I’m wrong here, but I would say that it’s mostly about the arts. I think that that’s maybe where we’re a little bit lagging again.
Jonathan: One thing that has troubled me, and I do reflect on whether I may have contributed to this in my own work, is that I wonder whether there are some people who have been on a very similar journey to you but perhaps a little bit later in adulthood where they now are starting to identify as blind but the blind culture perhaps promoted by and lived by people like me who’ve always been blind can appear to be a bit of a clique that’s hard to get into.
Leona: Also because your blind skills are so much better than ours. [laughs] I think it’s hard for us that our brains did not grow up with blindness. It can be a little tougher to learn Braille to maybe have a more innate sense of echolocation to just have really great blind skills. I think it can be intimidating for a lot of us that are coming on board late. That might also contribute to that as well.
Jonathan: I imagine that some sighted people and even some of those blind people I just talked about who perhaps view blindness as some dreadful affliction might find this book quite confronting. How has it been received so far?
Leona: It’s been good. One of the best reviews that I’ve had from a sighted author was in a little magazine called The Wall Street Journal. That was pretty darn exciting. It was a really great review, but there was one moment where, it’s always hard to quote something directly, but it was along the lines of because I was so insistent on blind people and sighted people that maybe I fell into a binary thought pattern that I was trying to dismantle. I felt like that had a little something to do with many liberal thinkers who believe that they have the right position on human rights but then still have further to go.
I think it’s scary to people sometimes that even if you’re thinking about things in a way that you feel like is progressive that you might still harbor some really deep prejudices towards blind and disabled people. I think that sometimes when people are confronted with things that maybe chip away at their own understanding of themselves it can be scary. I think that those might be the people that might be a little bit threatened that they haven’t actually thought about blind people as mothers. That they haven’t thought about blind people in positions of power. There are some shifts that have to happen. Human rights activism is a scary business for a lot of people.
Jonathan: Some people say, “Look, if you’re too radical, if you demand too much, if you call too much of this out you risk alienating sighted people and you’ve got to be careful not to be too radical.”
Leona: It’s like, “Why exactly?” I don’t really understand because, again, why would you not want to fight for your human rights? The fight for disability rights is a fight for human rights and anything less than that is us not wanting to make waves, I guess, in the way you’re saying. I guess I’m not really sure why. How would it benefit us to not push?
Jonathan: Yes. I’ve been thinking about this a lot lately because every so often I get some very constructive emails and sometimes quite trolling emails from people as a result of this podcast who say you’re becoming way too radical you need to dial it down. I’m thinking, “What is the key difference here?” I think this book so clearly highlights the key difference, we don’t have a lot of literature like this whereas many other communities that are discriminated against do.
Leona: Yes. I think that’s it. We don’t have enough of a voice in a place that both encompasses our blindness and goes beyond it. I quote a lot of Helen Keller in my book, but from the very beginning, I talk about how she was so frustrated. She’s one of the most famous blind and, of course, deaf as well, people that have ever existed. She was frustrated from the very beginning at the fact that she had extremely strong views on the world and on politics and wasn’t allowed to voice them. This goes back to what you were saying, “How do we negotiate the difference between pigeonholing and speaking up for our people?”
I think that until we have blind people who are also editors, who are also publishers, who are also magazine editors, and all of those things that’s the only way that we’re going to actually be able to affect change. You said it in the beginning; we need to have blind and visually impaired people and disabled people in all the same levels and layers of our society. Again, not just as subjects but as the people that make the media. That goes for marketers, that goes for publicists. How wonderful it would be to think about campaigns in different ways and things like that. How do we change it? It’s by having a lot of blind people in a lot of different positions.
Jonathan: When I used to go to school for my kids when they were younger, they would come home and they’d excitedly say, “We’re doing blind people this week, dad, and we want you to go do a show and tell.”
Leona: I almost spit out my tea on that one.
[laughter]
Jonathan: Or even earlier, when I was a kid I would go to visit schools, in all these cases, the kids would really excitedly bring this book about Helen Keller which had the Braille alphabet on the back of it. It was raised up, and they were so excited about this. It made me think people just wanted Helen Keller to stay in Shirley Temple mode, that it would have been okay if we’d have stopped hearing about Helen Keller after she was about 10.
I learned a lot about her. I did know actually that she was a socialist, that she promoted the rights of colored people, was an NAACP member. I knew all that stuff. What I didn’t know about was the vaudeville circuit thing that she did. I found that quite extraordinary. Can you give us some context around that and why she did that?
Leona: Yes. This was such a wonderful story. I just stumbled upon it. I was reading a book called The Radical Lives of Helen Keller which is a great book about just what you were talking about, about her very socialist, very lefty politics, but there was this dismissive little sentence that was like, “Oh, Helen Keller and Anne Sullivan performed for four years on the vaudeville circuit 1920 to ’24.” I had that same feeling that I think many people do when they read my book where it’s like, “What? How did I not hear about this before?”
I think that this speaks to a lot of what we’ve been talking about and that is that blind people are expected to be a certain kind of person, a certain kind of inspirational figure. I believe that even in her day people accused her of participating in this deplorable theatrical exhibition and she did it for extremely practical reasons. She was 40 years old when she hit the vaudeville circuit. She was not a child. She was very much a firm adult with many controversial views. I think that sometimes we have these ideas about what it is to be blind that if you’re going to do something that’s a little unsavory, people start crying, “Exploitation.”
It’s one of my little arguments in the book that the idea of exploitation is actually really dangerous because it suggests that we’re not able to make our own decisions so that if we don’t fall in line with being a little inspirational or being normal or being whatever, then we fall into this danger of not doing the right thing or not representing our people the right way or of being exploited, which to me is the most insulting part.
I think that that time on vaudeville was a little bit looked down on by her peers and the people that came after her. Here’s the thing, she had been doing the lecture circuit for a number of years through World War I. She had extreme views on the war; she was an antiwar activist as well. Her lectures were difficult. They were grueling, they would have to get off the train and then go straight to the podium. It was really tiring and stuff.
When this opportunity came around to do the vaudeville circuit, there were a few things going on. One, her writing career was not going the way she wanted it because, again, they just wanted her to keep writing about blindness over and over, “Write another memoir. Write another memoir.” She was frustrated with that. They weren’t making enough money. There’s a really beautiful paragraph in Midstream, which is where she talks about her vaudeville years, she says the reason I went into vaudeville was for the money because I was getting supported. She had all these pensions from I think Carnegie and things like that, but if she died, and she says this, “If I die, then Anne Sullivan will be left almost destitute.”
She was thinking not only of herself but also of her teacher. She had responsibilities; I guess that’s what I’m trying to say, and she went on to perform in vaudeville for very practical reasons, but once she was there, and this is really the fun part, when she was there, she found that she was actually able to spout her lefty politics in the question-and-answer period. They had prepared this list of questions. This is probably my favorite quickie one, the question would be, “What do you think of capitalism?” Her answer, “I think it has outgrown its usefulness.”
Jonathan: It actually reminded me of those Beatles press conferences in the 1960s, quick answers, witty answers to questions. [chuckles] It doesn’t sound like it was that unsavory. She was basically getting up there, giving a lecture and then answering questions, right?
Leona: Yes, that’s it. That’s the strange part about it was because it was attached to vaudeville and not part of maybe the more traditional lecture circuit, and also that she might be performing after a horse act and before Buster Keaton or something that it seemed a little below her or something, but again, it wouldn’t have been below her, I don’t think, if she wasn’t a disabled woman. It was below her because she was supposed to be angelic and pure and not hanging out with Charlie Chaplin and Buster Keaton and stuff.
Jonathan: You declare your atheism in the book, which is much riskier for you as an American than it is for me. We’ve had several atheist prime ministers here and everybody just yawns and says, “Well, whatever.”
Leona: Wow. [chuckles] I think I found my next country.
Jonathan: [laughs] Yes. We’ve got it going on. Our current prime minister, Jacinda Ardern, is an unmarried mother who’s an atheist. It doesn’t get much more left wing than that, I suppose.
Leona: No.
Jonathan: Do you think that blind people are more deeply religious on average than sighted people? If so, why is that?
Leona: I try and be as kind about this in my Christianity chapter as I can because I’m not sure that there’s any kind of obvious answers. You’re absolutely right, America does tend to be quite Christian. News bulletin. There is something to be said about the fact that a lot of philanthropic organizations I think have traditionally been guided by Christian principles. I think that that might be part of it. Then there’s the metaphorical side of it, which is that there’s a lot of blind people in the Christian Bible and it has everything to do with the revelation of Jesus.
I think that it has been a comfort for many blind people, especially, again, living in an ocularcentric world, to feel like there might be in this one way, this might be a useful thing to be blinded to the superficialities of the non-religious world. I think that it’s played into a lot of those very foundational Christian myths about– like the song says, “I once was blind, but now I see,” that divine revelation is a kind of a seeing and that you don’t need physical eyes for that.
Jonathan: Yes. A bunch of us got in trouble at school because we actually thought that that kind of language was pretty offensive. We started singing, “was blind, still am, can’t see.” I think we were eventually busted for that. There’s a dichotomy here and your book is full of these inconsistencies that you raise because–
You’re right, many religious institutions have done a lot of good, many schools for the blind around the place have been started by religious institutions, Braille publishing houses, all sorts of things. Yet one of the things that’s so difficult for those of us who are very comfortable in our own skin with our blindness is that it is perceived as something to be cured, that so many religions just don’t accept that disability is a relevant part of diversity.
Leona: Yes. It’s so interesting. This whole push for cure is such an interesting thing. A big middle part of my book is about the problem, of actually being “cured of blindness” when you’ve been blind your entire life, especially because your brain has developed in totally different ways. It’s like our brains get the fact that there’s blind culture. Our brains understand that there’s other ways of doing things and other paths for the neurons to travel and all of that. Actually, it can be quite debilitating to receive your sight if your brain has developed non-visual rays, your visual cortex has been taken over by patterns and things like that.
I am as far from a scientist as you can get, but I love this idea that there are multiple ways of moving through the world. That’s all I really want. That’s all the blind pride is really about. I joke a lot that I say when I say down with ocularcentrism, I’m not asking sighted people to pull an Oedipus and poke out their eyeballs. I’m not asking for everybody to be blind, but I am asking for people to understand that there are other ways of doing things that have nothing to do with a sighted person, just like closing their eyes for an hour or putting a blindfold on for a couple of hours and being like, “Man, that’s hard.”
I think that sometimes, again, a lot of sighted people think that they can know the blind experience because they can close their eyes or something like that. Whereas the blind person can’t possibly know anything about sighted experience, although we hear about it all the time. There’s that double standard that you were talking about again. That impulse to cure can be very dangerous because it assumes that our lives are lesser because of our blindness.
I’ve actually had the pleasure of visiting some residents down at the Baylor College of Medicine this month, and really talking about this very thing, letting them– It was supposed to be lectures on empathy, but I said, “You know what, maybe empathy is not the right impulse, or maybe it’s just a limited impulse.” It should be something that you’ve tried for, but in the end, you can’t understand what another person’s life is. There’s a limit to empathy. There’s a limit to understanding another person’s perspective.
I think that sometimes humility is actually the better response, to realize that your perceptions of what you think your life would be like as a blind person are not really useful in understanding a blind patient in front of you and that, for sure, there are going to be some blind people that are going to come and say, “I really want to be open to a cure.” There’s going to be a lot that are just going to be coming in to say, “I have a backache, can you take care of me, please?”
I had this experience where a doctor was like, “Oh, so you don’t see well,” or something like that. I was like, “Well, I’m blind.” It was a first appointment with a primary care physician. I said, “Yes, I’m blind.” I said with a smile or whatever because she had said, “Oh, you don’t see very well.” I thought that’s a bit of an understatement. “Yes, I’m blind.” She said, “I’m sorry.” I was like, “Excuse me, like why are you–”
It was amazing to me. Then it put me into this weird position of like, “Well, here I wrote this book.” I started getting braggy because I was so annoyed with her feeling pity when there was absolutely no reason to. I was really trying to find out if she was going to make a good primary care physician. I was supposed to be interviewing her and then I found myself getting braggy. I tell her about my book and give her a postcard for it and she looks at it and says, “Oh, well, that’s fun.” I was like, “I’m done with you.”
[laughter]
Jonathan: Yes, it’s hard not to go into brag mode.
Leona: That was a long rambling.
Jonathan: It’s hard not to go into brag mode in those situations.
Leona: Yes, but that impulse of saying, “I’m sorry,” that’s something that we need to figure out how to combat in a good way.
Jonathan: Yes. I get that a lot when calling call centers for technical support and they ask questions like, “Do you see the little red light flashing?” I say, “Well, no, I can’t because I’m blind.” Then they always intervene with, “I’m so sorry.” In your book you mention concerns that you have about terms like blind rage and blind drunk and that no thought is given to the impact that that kind of language is having on actual blind people. What impact do you think it’s having?
Leona: This is a tough one because I understand that there’s so much sight-oriented language that it would be very hard to worry about everything. People will say things like, “Oh, well, then we can’t say see you later.” To me that’s already a metaphorical use of see you later. I’ve even heard radio hosts say, “See you next time.” The problem with that pejorative use of blind that’s thrown around before all sorts of words to basically mean unconsciousness or thoughtlessness, as in the case of blind love or blind rage, is a difficult one because we’re not talking about the inability to see something.
For example, the metaphors of a blind spot to me seem fairly useful, but again, that rhetorical use of blind to mean thoughtlessness or unconsciousness, that seems to me to be very entrenched and dangerous. I would say that would be an instance where, if we could cool it with that for a little while, that would be nice. My big argument in that final chapter in the book is very much taken from Richard Dawkins, and he uses the word blind evolution.
Again, I just think it’s dangerous when you start to have these really grand metaphorics of the unconsciousness that’s equated with blindness because it’s very hard to then have something like blind pride because if blind is always a pejorative term, then how can we possibly create blind pride. I guess that’s where I do think that language is important and we might think to unravel it a little bit.
Jonathan: I recently took a complaint to New Zealand’s Broadcasting Standards Authority, I guess they play a similar role to the FCC, there are certain standards and if they’re breached, you can take a complaint under those standards, because I was listening to a radio interview, minding my own business, and we had the minister for the environment talking about a pretty serious situation that he was dealing with. He repeatedly said that he was completely blind about what was going on there. This was amplified at the front of the story. It was said on a couple of occasions by the politician and by the reporter.
It’s easy to get into what aboutisms and accusations of being too woke and all that usual stuff that try to put people back in their boxes, but to me, this is very harmful because if you constantly hear blindness as a synonym for stupidity and awareness, ignorance, it’s got to seep into the subconscious bias of employers, of policymakers, of society in general, and of future blind people who are listening to that interview who are having their expectations of blindness so horribly set by this constant reference of blindness to mean ignorance.
Leona: Yes. That’s all I can say to that. Yes, I agree completely. It’s strange to me when a lot of blind people I know take issue with it and say they really don’t care, “This was a metaphor. It doesn’t matter.” I don’t know. Man, if language doesn’t matter, what does matter? I don’t know. It very much controls our thinking. It controls our ability to communicate with each other. I think you’re exactly right. If it’s always a negative, again, how can we be okay with ourselves? How can we be okay as blind people when in every other context putting blind before a word is a negative?
Jonathan: I think that when you look at the evolution we’ve experienced in technology, and you talk about this in your book and how much information we now have access to, offices have gone paperless and yet still the unemployment statistics in the blind community do not budge. I would suggest that one of the reasons why they don’t budge is because of these pejorative uses of the term blind that create so much subconscious bias that people just can’t get past it.
We’re not going to change those perceptions until we start saying, “Look, we realize there was no ill intent here, that you weren’t insulting blind people directly intentionally, but you have and you’re actually demeaning the capacity of real actual blind people who have so much to give.”
Leona: Yes. Absolutely. Again, this is all about being writers and being creators and being the journalists who are going to not do that. I think on some level, it’s like a chicken and egg thing, until we are employed in these positions that are creating the content, that are creating our biases as cultures, which, of course, all cultures have, until we have some part in those constructions, we’re really at their mercy, and so you’re right, it’s we need to get employed, but we can’t get employed because of the biases but we can’t change those biases because we can’t get employed and it is [crosstalk].
Jonathan: It’s cyclical. What’s the answer then? Do you think there need to be quotas, some sort of legislation? How do you nudge it forward?
Leona: As an artist, I see a lot of claims of diversity. Diversity statements are usually what they’re called for, say, grants for schools, for all sorts of things, and jobs as well, of course. It’s very rare that disability is included. I think that’s number one, that’s the easiest thing in the world to do. To just say, we also recognize disability as being one of the marginalized communities that we are going to actively, I don’t know, give a leg up to, open the door for. I’m not sure.
People get very touchy if you start to talk about quotas and things like that, but my goodness, it’s been the opposite for so long. It does feel like there has to be some movement in the other direction a little bit because– I don’t know. I think the number one thing is to realize that disability has to be part of the diversity conversation. I think until that happens until we demand that, at every single grant we see, every single school declaration we see, that we just need to say, “Hey, include disability.”
I have a really good friend who is a romance novelist, and she’s written like 35 books and she is still trying to get her publisher to include disability in their statement of diversity. She’s with a major publisher. For whatever reason, they want to say something like, again, different abilities, but that’s not a political group. That’s not a politically protected group in America. Different abilities as I said before is not the thing that will help a blind person or somebody in a wheelchair get the access that they need. I don’t know. Man, there’s so much to do. I don’t even know where to start.
Jonathan: I want to come back to Braille because as I mentioned earlier, you did appear to have a road to Damascus experience with Braille. What role does Braille play in your life now and why did your attitude towards it change?
Leona: I have to say that I’ve always thought that Braille is really cool. That’s my intellectual assessment of Braille, it’s really cool and so I have tried through the years to learn it. I was discouraged I think on two counts. One, feeling like I was too old to learn Braille, and the other was feeling like I couldn’t get the books that I wanted on Braille so being frustrated in those two ways.
Two things happened. One was that I started reading more books about neuroscience and realizing that there’s still a lot of plasticity even to the older person’s brain. We might have to put a little bit more practice in, but there’s been some really amazing experiments that have been done that show that a sighted person under blindfold for just five days, their visual cortex will start to be activated by tactile input.
They are under a blindfold for five days; they get really intensive Braille training and at the end of those five days, their visual cortex has already started to change to accept tactile input because it’s not getting visual input. That was a major revelation for me where I was like, “Wow. I’m not learning Braille because I think I can’t learn Braille and I’m not putting the work into it because I’m afraid I’m going to fail.” It was the big part of the revelation.
The other part of the revolution or the other part of me really working so hard at Braille is because now I’ve got a nifty little wireless Braille display and so every book that I can get as an eBook I can access and read it in Braille. That’s just game-changing for me as an avid reader to be able to do that. Now a lot of times I go back and forth because I have spent 30 years basically listening to books. That has been my major way of doing it. Now I go back and forth.
I read Braille as much as I can, and then switch over to text to speech when I’m eating or whatever or doing other things, but it’s amazing. As a writer, I feel like I’ve done myself a disservice to not just throw myself completely into learning Braille because it really is the only way to read something with your own voice, to be able to create that literal own voice as opposed to an electronic reader or an audiobook narrator.
Jonathan: If you listen to an audiobook, are you reading?
Leona: Yes. I make a very strong argument for that, that all forms of reading are reading. I’ve listened to many audiobooks. There is a difference though, in so far as having control over the words that are coming at you. I think it’s reading, but it’s certainly is reading with a difference. I don’t know. What is your answer to that question?
Jonathan: I’m not sure. I suppose, to me, if you’re being quite clinical about the definition of reading, reading is taking information and processing it into language, isn’t it? If somebody is narrating a book and you’re being read to rather than actually reading, actually decoding the information and processing it yourself.
Leona: What about an electronic reader?
Jonathan: Yes, I would make the same argument. There are some people who have said over the years that unless you know Braille then as a blind person you’re not actually truly literate. Obviously, there are non Braille readers who take incredible offense to this. I understand it because if you’re being called illiterate, it’s not actually very nice, but if you’re looking at it purely objectively and clinically, what is literacy? It’s a really interesting question.
Leona: What I would say is that it’s all about the text. To me, it’s about transmitting the information within the text. To me, a book is a book and sometimes a lot of sighted people can fetishize the Braille reading too. They’ll say things to me like, “Oh, it must be so fascinating to read with your fingers.” It’s like, “No, it’s reading. Reading is reading.” I guess that’s why I like my electronic voice because I do feel over all these years I basically don’t hear the voice anymore. Whereas with a human narrator, I feel like I do.
I feel that it’s being interpreted by a human reader. Whereas I don’t really feel that way with an electronic narrator. Again, I’ll go back to the idea that the text is the all-important thing and getting the information of the text from the brain of the writer to the brain of the reader is the all-important thing rather than the modality of reading.
Jonathan: I don’t think you described it as such, but you mention what really amounts to a Braille renaissance that’s going on. I think that is largely because of electronic Braille devices, not only an abundance of them but the fact that they’ve actually become so much cheaper, which is great news. I understand that in the US, NLS is actually going to be distributing Braille devices, which is just terrific, and yet Braille’s demise was predicted just a few short years ago, wasn’t it?
Leona: Yes. I was one of those people. I was so wrong. Again, I felt back in the day when I was trying to get books and I couldn’t get them, I was like, “How is this going to survive if basically, 95% of the books that I want to read are not available?” I think that was a big problem, but you’re absolutely right, the ubiquity of eBooks, the much-maligned eBook, combined with Braille displays is nothing short of amazing, miraculous, really.
What’s interesting is that for many years, and this goes back all the way to the days of Braille, people tended to dismiss Braille as being too different. This gets back at what we’ve been talking about all along, that because Braille is so different because sighted people might actually have to learn something in order to be the teacher, that it’s not used unless you have a child who’s born blind. I think that then the educational powers at large realize that that kid must learn Braille, but for pretty much everybody else that goes blind or whatever, you are very much encouraged to learn a computer with text-to-speech basically, or enlargement software.
I think that this has a lot to do with these biases that we’ve been talking about that we should be doing things, if not the same as sighted people, then as close to the same as we can get. I think that that’s why until very recently it’s been difficult for people to get Braille education. Even kids who like me were losing sight as a 10-year-old and it was pretty clear that I was going to have a degenerative disease, that I wasn’t going to be able to read standard-size texts for very long, at the schools nobody mentioned that I should probably learn Braille, or force me into learning Braille. It’s not like you want to learn math when you’re 10 but you learn these things.
I’m excited that there seems to be a resurgence, but I still think that kids are not getting the training in Braille the way that they need to be fully literate. I actually made a visit to a school program once, and the kids were reading off of their Braille displays, they were high school kids and they were reading at probably second-grade level in terms of speed. It was a little disheartening. I just think they’re not quite getting the training. The technology is there now, which is awesome, but they’re not getting the training because there aren’t enough teachers that know Braille. It’s, again, this frustration there, but hopefully, that’ll change.
Jonathan: Yes. When I was involved a lot more visibly in advocacy in New Zealand, I made the point that for most of the time because of mainstreaming blind kids are actually being taught by teachers who, for them are illiterate, because they don’t know Braille. The mainstreaming of disabled kids has very many social benefits, of course, but people tend to want to put disability in one big box. You can’t always do that, particularly with mainstreaming.
If I want to make a success out of mainstreaming someone who uses a wheelchair, you’ve got to make sure that the physical access issues are taken care of. There are often one-off capital costs, but when you’re dealing with an alternative means of literacy, that’s an ongoing resourcing. You often have these really dedicated, capable teachers going from school to school, spending a lot of time in vehicles because they’re just not being resourced properly.
Leona: Yes. I’ve heard that there’s a lot of times there’s maybe one teacher for the blind amongst many students, just like you say, spread out amongst many schools. How can you possibly get the training that you need? I will say that this also speaks to something that we’ve talked about, which is, I think that it does happen with blind people that they’re afraid of, again, getting pigeonholed. It doesn’t seem to me that there’s as many Braille teachers that are blind as there might be as well.
I have no hard numbers there, but I’m thinking of a couple of people in particular that I know very specifically are blind, but they were afraid to go into blind education, that they didn’t want to do that. They wanted to teach “normal school” or whatever, but I will say, this might be one small place that we’ll have to agree to disagree, which is I do still strongly believe that you can be literate and use text to speech.
Jonathan: Yes, I do think I agree with you about that. There’s some debate in the blind community about it, but clearly, if you’re able to write well on your computer and spell check it, and you’re using text to speech, it’s hard to make the illiteracy argument there, isn’t it?
Leona: Yes.
Jonathan: I hope you do a second edition because there’s one little disappointment I have about the book and that is when you refer to Braille the code you followed the convention that’s recently been encouraged by the Braille Authority of North America. I imagine your editors have just done this and not capitalized it. Given that you obviously do feel a sense of blind pride and respect for those who’ve worked so hard to give us what we have, given also that Morse in Morse code is still capitalized, named after the inventor, don’t you think we should be capitalizing Braille in every instance.
Leona: Yes. I don’t think I’ve come across that. I would be happy to do that. That’s interesting because then would we also maybe adopt the deaf community’s use of capitalizing blind as well.
Jonathan: Yes. I was challenged about that by a listener, and to be honest, I’d never even considered it. I don’t know why I don’t do it. Maybe that’s something we’re going to move to.
Leona: Yes. I’d be completely open to that. It’s weird. I’m just completely taken by surprise. I don’t think that I’ve come across the capital Braille as the alphabet.
Jonathan: We used to do it, then in 2006 BANA asked people not to do it. When I was working with Freedom Scientific, I advocated about this, and at least then when I was there, we capitalized Braille out of respect for the man. I’ve written blog posts about this. It’s something I feel really passionate about. We’re working on changing it back in New Zealand as well, who’s just followed the BANA rules. Celsius is the same. Celsius is always capitalized as well.
Leona: Right. Of course. It makes so much sense. There’s a lot of reasons why I hope that my book goes into a second edition and that’s just one more is to capitalize Braille. Maybe we can even get it into the softcopy when it comes out. That is great. I will do it.
Jonathan: That is tremendous. It would be great to have you advocating for this on our side. I understand that buried somewhere in the NFB’s resolutions is also an NFB resolution that says Braille should be capitalized as well. There you go. I will send you my little blog post on this.
Leona: Oh, I would love that.
Jonathan: Your book is available obviously, in a variety of formats, did I read somewhere that you’ve read the audio version yourself?
Leona: Yes. I read the audiobook myself with the qualification that I did it using the electronic Cyrano method, which I have trademarked that name. Because I’m still quite slow at Braille, I enjoy it, but I’m quite slow. Again, because I’ve spent so much of my time listening to things and I developed this method of basically reading by ear. I would do performances and I would have a little earbud in my ear and I would cut the lines really short and basically repeat the words with hopefully a little bit more emotion and gusto than my electronic voice is reading it to me. An electronic prompter basically is the way that I did it.
I just thought it would be no big deal since I had done many readings this way that I could just read my whole audiobook this way as well. It turned out to be very daunting. The last thing I said in the studio was, “I am never going to read another audiobook until I’m good enough at Braille to read it,” because it was really hard. It was a really hard, but I did it and I’m really glad that I did. Actually, we put a little what we called a disclaimer, but really it’s an announcement at the beginning of the book explaining what’s going on. We weren’t sure if you would be able to hear my screen reader or whatever, it turns out that you really can’t hear it.
Here’s a little secret of the audiobook industry. There’s a convention that if you have a book that says things like dear reader, or if you’re reading this and, on the fly, they change it to listening. Here’s what you’re saying. It was funny because the director and I got into quite a confused conversation where I was like, “I don’t want to change my word, reader to listener, because I believe that reading by ear is still reading. It was funny because we went around on for a little while and finally she sort of agreed but didn’t totally understand.
There’s one spot I think that I missed because it was first day in the studio. In fact, I said listener instead of reader, but I think the rest of the time I changed it back or kept it as a reader in the book, but that’s just interesting that they actually do make that kind of a distinction where in my disclaimer there’s all kinds of reading. I think that’s what I say at the end of it, “There’s all kinds of reading and I hope you enjoy this one.” That was the audiobook.
Jonathan: We should celebrate that because you found an alternative technique that worked for you and you are now an audiobook narrator. I’ve not done this myself, but I did when I was doing Freedom Scientific’s podcast some years ago, interview a woman in Australia, who’s since that interview gone on to great things in broadcasting. She’s a newsreader, or she was then, and she would use JAWS and Eloquence.
In her headphones, JAWS would be reading the news, and then she would repeat it back in very authoritative news-reading style. What I said to the people at the ABC in Australia is can you give me a feed of one of these bulletins where I get one track with her Eloquence and one track that’s going out on the radio so we can hear how this actually works. It was really brilliant. She’s just quite amazing at doing that stuff.
Leona: Oh, I would love to hear that. That is so wonderful. It’s funny, there’s more and more of us that were sort of coming out of the woodwork. I didn’t even think about it. The way that I first started doing it was because I had a friend that was like a year ahead of me in my PhD program. Now she’s a full professor, a tenured professor at the University of Wisconsin, but she’s the first one that said, “This is how I do my lectures,” and I was like, “Wow, I can do that too.” That’s where it started.
I just recently met a guy named James Tate Hill, and actually, his book just hits today called Blind Man’s Bluff, he also uses the electronic Cyrano method of reading. He did not read his own audiobook, but he has done many readings using that method. I think there’s a lot of us, and we’ve just, again, been a little bit embarrassed about it and have tried to pretend like we’re not doing it or something. It’d be interesting to hear if other listeners that you have are electronic prompter readers.
Jonathan: I think there’s a lot of it about, as they say. How long did it take you to write this?
Leona: In some ways, I’ve been writing it for 20 years, so there are parts of it– I shamelessly revamped a part of my dissertation, particularly the Milton chapter and the microscopes and telescopes chapters. The stuff that’s firmly in the 17th century, I rewrote bits of my dissertation. Hopefully, in a much more accessible language. The Helen Keller stuff, I had written a play about Helen Keller on vaudeville, a one-woman show. I’d been kind of thinking about those ideas for a long time.
Some of it had been animating everything that I’ve done as an academic and artist for the last 20 years. I sold the book at the end of 2018. I wrote the first draft of it over the course of 2019, then rewrote it over the course of 2020, and then by the end of 2020, I was in copy edits and final edits and things like that. About just under two years, I guess.
Jonathan: You get to the point where you’re so familiar with your own work that you stop noticing your own areas too, don’t you?
Leona: Oh my God, there’s still stuff that I find that I can’t even believe slipped through me and the fact-checkers and stuff, but friends have told me like, “No matter what you do, there’s always going to be a few things.”
Jonathan: I think it was Carly Fiorina who coined the phrase perfect enough for release and I get them, really. Will you write anything more? Is there another book in the works?
Leona: Oh yes. Speaking of that whole own voices thing, I’ve got a novel in the works and really hope to get that out there in the world.
Jonathan: Not only has this been the only book I’ve ever read twice consecutively, but I think this is now the longest interview that I have ever done, and you have been very generous with your time, but I just want to close by saying again, I don’t think I have the words to communicate to you just how grateful I am for this book. It gave me one hell of a lift. I really appreciate it and I appreciate all the time you’ve given us on the show today.
Leona: Oh my goodness, it’s been such a pleasure. Your words make me so happy. I’m so grateful. Thank you.
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Jonathan: 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 with an audio attachment to jonathan@mushroomfm.com. If you’d rather call in, use the listener line number in the United States, 864-606-6736.
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[01:55:21] [END OF AUDIO]