🎙️ Remarkable World Commentary Episode #57: Interview with Ian White, President, CCB Toronto Visionaries, | Donna J. Jodhan, LLB, ACSP, MBA https://donnajodhan.com/rwc-11-03-2025/

In this insightful episode of Remarkable World Commentary, Donna J. Jodhan welcomes community builder Ian White to trace his path from congenital glaucoma and a thriving career in corporate interior design to sudden vision loss in his early 40s, and the reinvention that followed through community, advocacy, and leadership. White explains how a small peer circle became the CCB Toronto Visionaries, now ~170 strong, built to break isolation through relaxed social spaces and rich information-sharing, and he paints an "audio picture" of their White Cane Week Experience Expo, a three-part trade show, forum, and community dinner designed to help people "discover what's possible."

The conversation turns practical and policy-minded: Ian spotlights the grassroots Get Together with Technology (GTT) meetups, where novices and power users troubleshoot together; shares survey findings that 76% of respondents name the smartphone as their most essential assistive tool and describes how smart glasses paired to phones are becoming hands-free game-changers; and unpacks Deloitte's headline figure that vision loss costs Canada ~$33B annually, with ~$15B in health care and >$17B in lost well-being/productivity, underscoring prevention, early diagnosis, and the need to tackle social costs head-on. He closes with ongoing advocacy to modernize Ontario's Assistive Devices Program (including cane funding) and federal work around Bill C-284, Canada's national eye-care strategy.

TRANSCRIPT

Podcast Commentator: Greetings. Donna J Jodhan, LLB, ACSP and MBA, invites you to listen to her biweekly podcast, Remarkable World Commentary. Here, donna shares some of her innermost thoughts, insights, perspectives, and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, site loss coach, dinner mystery producer, writer, entrepreneur, law graduate, and podcast commentator. She has decades of lived experiences, knowledge, skills, and expertise in access technology and information as someone who has been internationally recognized for her work and roles, she just wants to make things better than possible.

Donna J. Jodhan, LLB, ACSP, MBA: Hello everyone, and welcome to another episode of Remarkable World Commentary. I'm Donna Jodhan, a lifelong disability advocate and one who sees the world mainly through sound, touch and stubborn optimism. I am a law graduate, accessibility consultant, author, lifelong barrier buster who also happens to be blind. You may know me from a few headline moments. In November of 2010, I won the Landmark Charter case that forced the Canadian government to make its website accessible to every Canadian, not just to sighted ones. And in July of 2019, I co-led the Accessible Canada Act with more than two dozen disability groups to turn equal access into federal law. And most recently, on June 3rd, 2022, I was greatly humbled by Her Late Majesty's Platinum Jubilee Award for tireless commitment to removing barriers. When I'm not in a courtroom or a committee room or a pottery studio, you will find me coaching kids with vision loss, producing audio mysteries, or helping tech companies to make their gadgets talk back in plain language. Everything I do circles one goal to turn accessibility from an afterthought into everyday practice. I invite you to think of this show as our shared workbench where policy meets lived experience and lived experience sparks fresh ideas. Now, before we jump into today's conversation, let me shine a spotlight on today's guest, a change maker whose work is every bit as remarkable as the world that we are trying to build. Ian White, welcome to my remarkable World commentary, and it is such a privilege and a pleasure to have you with us.

Ian White: Thank you so much for inviting me. This is such an honor. Great to be here.

Donna J. Jodhan, LLB, ACSP, MBA: I am just so tickled that you're here because, you know, we've known each other for quite a few years, and we've you.

Ian White: Yeah. Oh, yeah.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah, we've cooperated on a lot of different things. You let me be Mrs. Claus at the Christmas dinners.

Ian White: A highlight, I must say.

Donna J. Jodhan, LLB, ACSP, MBA: It was. It was great. It was.

Ian White: Great fun. It was a lot of fun.

Donna J. Jodhan, LLB, ACSP, MBA: And then we did the boat cruises and we did other things. So, you know, you have done so much for us, our community, and you have done a lot for the visionaries as well. So welcome aboard.

Ian White: Thanks so much. As I said, it's such a great honor to be here.

Donna J. Jodhan, LLB, ACSP, MBA: Thank you. So, Ian, to set the stage for our listeners, would you share your journey with Vision Loss and how you pivoted it from a career in interior design to building one of the most active vision loss communities in Canada?

Ian White: Okay brief, brief bio on me. So basically, I was born with congenital glaucoma. Oh.

Donna J. Jodhan, LLB, ACSP, MBA: Like me?

Ian White: Yeah, yeah. And there are a bunch of us out there. So as an infant, I had increased intraocular pressure, and it was the diagnosis basically was that I would be blind by the time I was one year old. And so my parents acted very quickly and got me into some experimental surgery that actually decreased the pressures, stabilized them, and basically saved my vision. So although I grew up quite myopic, I had usable vision and basically grew up sighted, so went through the regular school system, went through the regular post-secondary education system. Got onto a career path. I remember as a kid sitting in my ophthalmologist's office and my parents asked the question which is like, are there are there things that we should guide him away from? There are the things that we should steer him away from because of his vision. And I, I don't know how I remember this as a as a kid. I must have been 5 or 6 years old. And I remember my ophthalmologist saying, let him tell you what he can do.

Donna J. Jodhan, LLB, ACSP, MBA: Yes.

Ian White: That was brilliant advice. And that's exactly what my parents did for me. They allowed me to set the stage and make choices. One of the things that was part of my early life was a passion for things. Visual. Oddly enough I was deeply interested in art and architecture and reading and traveling and a whole bunch of other things that were utterly dependent on vision, including my choice of career. I ended up going into interior design into the corporate sector. So I was I was a designer who was working on large corporate office space, doing multi-floor projects in major buildings all over the country, working for major institutions, banks, financial institutions, insurance companies, all that kind of thing. Up until I was about 40 late 30s, early 40s. And at that point I started developing cataracts. So we did a very straightforward cataract surgery. It was successful, but because of the damage that had been done to my eyes very early on in my trajectory the systems in my eye were not as strong as they should have been to withstand surgery. And so there were a series of, of sort of knock on effects from that. And which ultimately resulted in a whole raft of other problems that essentially rendered me with only light perception in one eye.

Donna J. Jodhan, LLB, ACSP, MBA: Oh, gosh.

Ian White: Okay, so at the age of 40 or so I went from a senior project manager with one of Canada's top corporate design firms husband, father, architecture enthusiast to being a blind guy. And I honestly don't know. I had no idea what to do with that. Oh, gosh, I didn't I didn't know any blind people. I had no idea what was possible for me. I had imbibed over my sighted trajectory all of the biases and stereotypes that are common in our socialization that people with disabilities are broken, that they're incapable, that they can't, can't, can't. And that was how I was viewing myself through that transition period. And it was really only through getting connected with blindness related organizations and ultimately with the blind community, that I realized that the possibilities are endless. The only thing wrong with me is that I don't see the way most people do. Everything. Everything else is just fine. Thank you. So so I ended up doing some experimental adventures in post-secondary education again. I actually completed a second degree and got involved as a volunteer with organizations like the Cnib. Was a peer mentor coming out of their New Beginnings program, which spawned a peer support group that came off the back end of one of those groups. And that was just an opportunity to connect with other blind people on a regular basis, talk about what mattered to them.

Ian White: Explore possibilities with them and really push myself to learn about. What was out there and how to get connected with it. That spun in 2013 into Forming a chapter under the Canadian Council of the blind, which is a national registered charity with about. I think they have about 75 or 80 chapters across the country. And these chapters are all locally organized and volunteer driven. So it was an opportunity for us to sort of get more formally organized and, and really open up to the blind community here in Toronto, where I live. We grew that chapter from an initial membership of about 20 people. We now have about 170 regular members and went from doing a single two hour meeting once a month to I think there are about a dozen and a half Regular activities that we do through the month. And then on top of that, we do a number of special events. We do boat cruises, we do the White Cane, we Experience Expo, which we'll talk about a little later. We do you know, going out to restaurants and cultural institutions and exploring those and it's become quite a thing, which has been a.

Donna J. Jodhan, LLB, ACSP, MBA: Lot of fun. Yeah. Yeah, yeah. It has.

Ian White: So that's, that's kind of the, the trajectory. And it's put me into a place where I can, you know, I've sort of gone from my past life as a corporate interior designer through a very dark period where I had no idea what to make of myself and had to reinvent my identity, to now seeing myself as more of a community leader and an advocate.

Donna J. Jodhan, LLB, ACSP, MBA: And a lot more than that, if I should say, I am absolutely impressed by your story.

Ian White: Thank you.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah. So you helped to grow a peer support circle into the CCB? Toronto visionaries. What problem were you trying to solve at the beginning? And how has the chapter's mission of breaking isolation evolved over the years?

Ian White: So one of the things that I recognized very early on in my career as a blind person is that in Toronto, particularly, we are we are blessed with an amazing array of possibilities, whether it's recreational groups, service providers you know, places where you can get test and train on assistive tech. There's a great, you know public transit system here so you can get around there are all kinds of of activities that are available to the blind community. But what I realized really early on was that the information was all sort of siloed. It was, you know, these people would go tandem cycling, but these people didn't know that there was also a bowling group, or there was also a downhill skiing group. Do you know what I mean? Like that? Yes. And the skiing group didn't know about the tandem cyclers. So one of the things that that through this sort of discovering what was available and what was possible I came to realize that that there was a whole bunch of information out there and nobody knew how to get at it. Right. So, so the idea initially was really just to share information with the group that we had. It started out as a very small group, as I said. But what was interesting about it was the curiosity, especially for people who are relatively new to vision loss and really didn't know what was possible, right? Right. They would eagerly seek out this information. And if we could bring it together in a, in a sort of a relaxed social setting and just, you know, throw it out there and say, hey, look, this is a thing that blind people do and this is how you do it. And we get the, you know, the people who were organizing that activity in to talk about it and how much fun it is and where you go to get it and how much it costs, and yada, yada, yada.

Ian White: And we found that people really responded to that. And I think the other thing that that was really vital was that we weren't a service provider, we weren't a training service. We weren't a. We were just an opportunity for people to get together and be social with each other, you know, and to have fun. Because a lot of the the programs that were on deck at the time that we were getting started were We're very much, you know objective delivery, kind of measured programs. They were you know, of a set length you'd go for 6 or 8 weeks, you'd have certain objectives in terms of what you were supposed to learn. You had to demonstrate that you learned them, and then they'd cut you loose. Then what do you do? So what we realized pretty early on was that in order to create spaces for people to come together and absorb all this information that we were sharing, the easiest way to do that was just exactly that. It was to create little social spaces, right? Perhaps with an excuse whether it's a, you know, a formal meeting or whether it's at a pub or whether it's going out to on a tour of a, you know, a venue or something. But what happens when you bring blind people together? And I'm sure this is true of most disability groups. What ends up happening is that the blindness piece just sort of disappears and people engage with each other just as people.

Donna J. Jodhan, LLB, ACSP, MBA: Right.

Ian White: Right. And you can suddenly talk about, you know, the things that you're struggling with or the frustrations you're having because you're talking to people who get it. You know, you're talking to others who have already been down that road, have probably already solved the problem that you're struggling with, and can give you some really great advice on how to take next steps. And that happens just casually in a social environment. And so that's what we tried to create was a series of opportunities for people to come together and just share information with each other, share questions, share frustrations, share their concerns, talk about what works, what doesn't. And and we found that was a really powerful formula. So I think in terms of what we were able to create, it sort of comes in two two flavors. One was you just create space for those social opportunities to happen so people can get together and have some fun with other people who they don't have to explain themselves to. You know, you don't have to apologize for being blind. Everybody in the room is blind. If somebody knocks over a drink, everybody goes, yeah, okay, where are the paper towels? You know, it's not a big deal, right? Right. And and the other piece of it was the information sharing piece. So one of the things that I found particularly fascinating about being one of the instigators of this whole affair was just being able to exercise my curiosity about what was possible. You know, what's out there? What what are people willing to do to to meet us halfway and, you know, afford us the kind of opportunity that is meaningful for for people who aren't really sure what's possible, what's available and what's accessible.

Donna J. Jodhan, LLB, ACSP, MBA: Right?

Ian White: Yeah.

Donna J. Jodhan, LLB, ACSP, MBA: Congratulations on the June Callwood Award for your outstanding achievement award. And the visionary and the visionaries ten year milestone. Now, what do those recognitions say about the model you've built, and what were the turning points that made it work?

Ian White: I think really it was really just about creating space for people and, and engaging them as people instead of engaging them as blind people. Being, being do you know what I mean, though? Like being curious about them as people. What are your interests? What do you like to do? What are you what would you rather be doing? You know, what kind of restaurants do you like? What kind of activities do you do you love to get involved with? What do you do for work? You know and, and just having the opportunity to engage with a whole range of people because, as you know, like eye disease and blindness don't really care where you're from or what you do for a living.

Donna J. Jodhan, LLB, ACSP, MBA: No, they don't discriminate.

Ian White: They really don't. And so you get this really fascinating mix of people in a room who are coming from all kinds of different backgrounds, all kinds of different socioeconomic strata all kinds of education levels. And it's fascinating to just dive in and go, okay, so this is me. Who are you?

Donna J. Jodhan, LLB, ACSP, MBA: Absolutely. Yeah.

Ian White: It's a lot of fun. And, and I think the opportunity for us to learn from each other because, as I said, you know, one of the things that was huge for me was getting connected with people who had been blind for a while, had already been down that road, you know, and knew what I was struggling with and could help me guide me on my next steps along my journey. But really, I think the fundamental thing was the recognition for social engagement. You know, it was the it was the opportunity for people to get together. No pressure. You know, you're not you're not under the gun. You're not being measured. You're just coming together to have some fun with other people who get it. And to just explore a wide variety of options and access a whole raft of, of information about what's possible. The chapter itself grew pretty organically, actually. Because we started very small and with very few resources. It took a while to sort of build capacity, but you know, as ideas came up, we would explore them. We would see what we could do. I became really shameless about asking for stuff.

Donna J. Jodhan, LLB, ACSP, MBA: I know that, yeah.

Ian White: Whether, you know, whether it was a free room rental or, you know, could could we organize something with a caterer where we're just paying them for their food costs, and maybe they're donating their time, like all these kinds of things that would really reduce the cost of of getting us off the ground. And we were very fortunate because we encountered a number of very generous donors who came forward with some financial resources. And and so the the more resources we had, the more people got involved. The more volunteers we engaged, the more financial backing we had, the the greater the reach we could have. And so that allowed us to really branch out and explore a whole bunch of stuff that that initially would have been beyond our means. But but yeah, I always operated on the basic theory of, you know, if you don't ask, you won't get. So you must ask.

Donna J. Jodhan, LLB, ACSP, MBA: Ask and you shall receive. Yeah.

Ian White: Yeah. Exactly.

Donna J. Jodhan, LLB, ACSP, MBA: So for listeners who've never attended and I'm one of those paint an audio picture of the White Cane Week. It's a it's an experience. It's an expo. Okay.

Ian White: Yeah.

Donna J. Jodhan, LLB, ACSP, MBA: What happens there? What makes it unique? And what kind of real world outcomes have you seen?

Ian White: So this this whole idea was generated out of this notion of wanting to share as much information as possible about what was available in the Toronto area for for people in the blind community. And so the the idea was basically like a trade show. But it comes in sort of three parts, and each part sort of feeds into three different aspects of what we do. So initially the expo itself, it's essentially a trade show. It's we gather together. I think we've had between sort of 35 and 50 exhibitors, depending on the year, who will set up a table and just be available to either show their products or describe their services, or help people get connected or have an experience. And all of these organizations are in some way supporting the blind community. So we would have people come together from advocacy, from education, from workplace and employment from service providers assistive technology vendors clubs, sports groups everything and anything like the Toronto Public Library would come and talk about their accessible services. The TTC would be there to talk about Wheel-trans and its services, and how they're implementing accessibility throughout the TTC network, the Toronto transit community. So it was it was really a wide range of different kinds of organizations, but all of which sort of feed into this whole experience of living with vision loss. And the whole idea of it was to bring together all this information in one place at one time. So you as an individual could go in and just discover, right? Just discover what's available and see possibilities that you might not have thought were possible. I remember having a conversation at the very first expo we did with a guy from an organization called the Ice Owls, which is a blind hockey team.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah, I know them. So.

Ian White: So these guys, these guys are talk about fearless. These guys are absolutely fearless. They are blind and visually impaired hockey players. And they compete both locally and nationally. And they go at speed on ice, on blades after a puck that is filled with sort of nuts and bolts and a bunch of things that make it rattle as it moves. So they can track it. And I don't know how they do it. I have no idea.

Donna J. Jodhan, LLB, ACSP, MBA: I know how they do it. They belted me across the the ice rink one time.

Ian White: Oh, did they really?

Ian White: Yeah. Okay.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah. So keep on.

Ian White: Going.

Ian White: No, I you know, it's it's one of those things like, I've, I've met so many people through this journey who have just blown my mind. I've talked to people who have, you know, run the Boston Marathon twice. I know people who have crewed on a tall ship in the South Pacific for five months. I know, I know a guy whose favorite activity is to go scuba diving and explore sunken wrecks, all totally blind. And once you've met people like that.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah.

Ian White: You sort of look at yourself and go you know, maybe getting to the corner store is doable.

Donna J. Jodhan, LLB, ACSP, MBA: Absolutely.

Ian White: You know. Yeah.

Ian White: So I want to talk about the other two parts. So that's the the expo. It's just an opportunity to come in and smorgasbord your brains out and and discover the second part is the forum. So the forum is basically a panel discussion, and this is sort of the information sharing another aspect of the information sharing piece. So what we would do is we would bring together a panel of experts on a particular subject or topic and have them sort of give us a state of the nation, like what's going on in assistive tech, what's going on in, you know government advocacy, what's going on in the latest sort of medical research, what's going on in whatever aspect it is that has to do with, you know, something important about living with vision loss and something that that is important to the community to to know and understand. And we would do that both in person and online, so that people who couldn't make it down to the show could also get that information. And then the third piece was a social dinner. And that really speaks to the social having fun piece of, of of what we do. And it was really just an opportunity to say thank you to the community to celebrate you know, who we are and what we do in all its crazy diversity and just enjoy each other's company and have fun for an evening. So so that was that sort of gives you a snapshot of what the expo is all about, right? I think it's unique because of the breadth of the exhibitors, the the range of things that were present there that you could explore. And and I think just allowing attendees to come away better informed than they were before, just having a little more information about what's out there and what's possible.

Donna J. Jodhan, LLB, ACSP, MBA: Wonderful. Now you co-founded the Toronto, US getting together with technology. What gap does it fill between formal training and everyday life? And can you share a concrete example of someone's tech problem that the group helped to solve?

Ian White: Yeah. The Get Together with technology program is an amazing program. It's actually a national program that was initiated by a lady named Kim Kilpatrick in Ottawa. Probably what 12, 15 years ago. And it was supported by the ECB, the Canadian Council of the blind and rolled out through a number of groups that operate across the country. I was intrigued by this. And with a couple of co-conspirators, set up the Toronto incarnation of it. And really, the idea here, which is kind of unique, is, again, it's very grassroots, very sort of bottom up organized. So what it essentially is, is it's a group of assistive technology users at various levels, from absolute novice to absolute expert. You bring them together in a room and you just cut them loose and let them talk. And what ends up happening there is that a lot of information gets shared about what technology is out there, where you can get it, what it costs, how to get trained on it, tips and tricks about how to use it, and troubleshooting. If if somebody's got a piece of tech and they don't, they they get stuck on something. You know, whether it's, trying to figure out how to use a particular app or, you know, even just getting the accessibility features on your smartphone set up properly. There's a forum where you can bring those questions to a group and just throw it out and say, has anybody encountered this problem? And if you have, do you have any solutions for it? And you'd be amazed how many people go, yeah, yeah, I got that.

Ian White: And so it's a real sort of opportunity to again share information, bring in people who are connected to the assistive technology space and have them talk about a particular product or a line of products or, or you know training services that are available. And and really just give people the opportunity to share the knowledge that they possess you know there are people who are really, really good at assistive tech and there are people who really struggle with it. So it's great to be able to say, you know, there are all these tools out there that blind people can use, but if you're one of those people who is really technophobic or you don't, you just your mind doesn't work in a way that allows you to grasp the how to easily. Then it's really, really helpful to be able to get into a space and not feel embarrassed about asking those simple questions about how to how to use it better. Because every time you do, every time you, you sort of gain a piece of information about how to use an assistive tool, you open your world up a little bit further and you reclaim a little of your independence. Right? And I think that's the real power of the DTT groups. It's not a fixed term training session. It's it's really open, really dynamic. And and allows people to explore assistive tech sort of at their own pace.

Ian White: Yeah. Wow.

Ian White: Sorry. Sorry. Just before you. Before you jump on, I wanted to mention you asked about whether I had seen any particular instances of of people's lives being opened up that way. I think there are a couple of things. And I'm going to speak in sort of general terms initially, but I'll drill down a little bit. One of the things that was discovered during a survey we did a few years ago looking for information on people's experiences with the assistive device program in Ontario.

Ian White: One of the things one of the questions we asked was, what is your most powerful, most necessary assistive tool?

Ian White: 76% of people said the smartphone.

Donna J. Jodhan, LLB, ACSP, MBA: Really? I'm not surprised.

Ian White: Yeah, I'm not either.

Ian White: And a lot of that is because Smartphones allow you to connect to an entire digital world using accessibility features that are baked into the device.

Ian White: Right?

Ian White: And then it acts as a platform for all the tools that have been specifically designed to run on that platform. So there are all kinds of applications and programs that are specifically designed to help blind people that will only run on a smartphone. So getting to grips with a smartphone is a huge game changer for a lot of people. Even just in terms of being able to connect and communicate with family, you know, friends, your social network, your, you know your employment network and so many of the tools are, are are really great. Whether it's for navigation or optical character recognition or image description. These are all tools that are specifically designed to run on a smartphone. Combined with that, one of the recent things that everybody's already talking about and is becoming a real game changer in the marketplace is smart glasses.

Ian White: Paired.

Ian White: Paired to your smartphone. And what that allows you to do is basically hands free, have access to an AI assistant that can do everything from image description to connect you to an agent who can assist you. It can, you know, there's just so many applications that are directly relevant to overcoming visual barriers that we encounter every day. And there's something you can wear on your head paired to your smartphone. And it's so simple and so easy. And, and people have just raved about how useful these tools are.

Ian White: Yeah.

Donna J. Jodhan, LLB, ACSP, MBA: Thank you, Steve Jobs. A.

Ian White: Amen, brother.

Ian White: Yeah.

Ian White: I mean you know, between Apple and Android. Yeah, they've they've moved the world for, for people with visual disabilities. Absolutely.

Donna J. Jodhan, LLB, ACSP, MBA: By leaps and bounds.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah.

Ian White: Yeah yeah.

Donna J. Jodhan, LLB, ACSP, MBA: Now you often point people to the Deloitte cost of vision loss in Canada study. And especially you know to its executive summary.

Donna J. Jodhan, LLB, ACSP, MBA: What are the headline numbers that listeners should know. And what does the report project if nothing changes by 2050.

Ian White: So this was a study that was undertaken in I think 2021 by a consortium of of groups led by research professional doctor Keith Gordon. And basically it was a study that was sort of a reprise of one that had been done many, many years ago in around 2007, hadn't been updated since. And we know that the population has grown society has changed. The health care system has changed. There are all kinds of things that were no longer relevant from the 2007 study. So the idea was to to take a really hard look at, okay, what are the actual impacts of vision loss on Canadian society and what can be associated with those impacts? And and why should we be concerned about that? Well, what the study basically showed was that the cost of vision loss in Canada annually is about $33 billion, right?

Donna J. Jodhan, LLB, ACSP, MBA: Yeah.

Ian White: That's why we should take it seriously.

Ian White: Right now.

Ian White: Of that 33 billion over 15 billion of it is direct healthcare costs. So that's going to your optician, going to your optometrist getting treatment. And, you know, if you have surgery or if you have lasers, if you have, you know injections, whatever it is that they're doing to, to treat you in a healthcare setting. Those are the costs that are captured under that 15 billion. Then the other half and actually the larger half was over $17 billion in what are called lost well-being or lost productivity costs. And what that means is, once you encounter vision loss things like your ability to continue earning becomes negatively impacted. Your ability to support your family becomes negatively impacted. Your social relationships and community networks degrade because people with disabilities, and particularly vision disabilities, tend to isolate and be caused by family. And taken care of. Because, again, unless you pursue an active program of of building your independence back and sort of engaging with your blindness in a way that that sort of masters it and gets you back out into community. There's a tendency for people to sort of withdraw and not participate. So there are negative impacts on family and friends and social networks. There are negative impacts on your participation in everything from economics to education to employment to, you know, paying your taxes. And these are all sort of negative impacts that fall out of living with blindness. They also ramify into future negative health impacts. So people with vision loss are more likely to die earlier than sighted people. They're more.

Ian White: Likely.

Ian White: They're more likely to have falls, which put them in hospital. Right? They're more likely to be referred earlier than they normally would be to a home care setting.

Ian White: Or a, you know, a formal senior's residence or support facility. They are much more likely to make mistakes around prescriptions and get into trouble that way.

Ian White: I did.

Ian White: You know, it what happens to a lot of us?

Ian White: Yes.

Ian White: Because, you know, how do you overcome the barrier of trying to read the dosage, you know, on a particular medication or even make sure that you have the right medication in your hand when you're when you're administering it. Right. There are ways, but a lot of people don't know them. So there are a whole series of, of sort of knock on effects that happen. That again, is part of that, that 17 billion. So the, the so basically what the study does is it separates the direct healthcare costs from those social costs and, and itemizes them individually and tries to suggest that they be dealt with in concert so that, you know, any strategy that, that tries to improve health care delivery or the negative impact that the cost to society of vision loss in Canada would be more successful.

Donna J. Jodhan, LLB, ACSP, MBA: Do you think we need to build more awareness and educate society about this topic?

Ian White: Yes, absolutely. We'll we'll get into this in a little bit. But you know, there is so much misinformation or lack of information about what it means to live with blindness. There are so many assumptions that are projected onto us from sighted people based on the fear of what they feel they could not do if they were in our position. It's actually grounded in empathy, believe it or not. But it's but it's empathy without information. So the the problem is, and I've had this conversation with I can't imagine how many people where, you know, someone will approach me on a sidewalk and congratulate me Yes, and be amazed that I am walking down a sidewalk.

Donna J. Jodhan, LLB, ACSP, MBA: I know I've had that happen to me.

Ian White: Well, and again, it comes from a good place in that what that person is doing is they're saying, if I were to cover my eyes right now, yeah. Would I be able to do what you're doing? And the answer is no. Right. And what they don't realize is that I've been doing this for 25 years now. I've had specific orientation and mobility training to make sure that I can do it safely. I've been given the tool with which to do it, which is my white cane. And I've practiced and practiced and practiced and practiced. So yeah, I'm pretty good at going down the sidewalk. But again, it's this disconnect between what people think we're capable of and what we're actually capable of. Right. And and that, you know, piece of public awareness, if we could get that across you know, just open people up to the possibility of what we're capable of, I think would be a huge, huge thing. And on top of all of that is to really stress that you need to take care of the site you have. You need to be aware that and not take it for granted. You need to get in and get an eye exam because a lot of the the diseases that affect your eyesight.

Donna J. Jodhan, LLB, ACSP, MBA: Yeah.

Ian White: Are there and working away long before you ever realize there's a problem. And they can be diagnosed and treatment interventions can be implemented long before you start to lose vision.

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Donna J. Jodhan, LLB, ACSP, MBA: Right.

Ian White: You know, so you can actually stave off a lot of the negative impacts of vision of eye disease by early diagnosis and aggressive treatment. And so So you can actually save a lot of vision. And again we'll get into the importance of prevention and and what's been. What's been put together in terms of trying to make that happen.

Ian White: Yeah.

Donna J. Jodhan, LLB, ACSP, MBA: My poor old clock is starting to tell me time is winding down. But. Oh dear I wanted to ask you this question. Yeah. The report separates financial costs from loss of well-being. All right. In plain language, what does loss of well-being mean? And why should policymakers and the public take that part of the cost as seriously as dollars and cents?

Ian White: So in in very straightforward terms the difference between the two, the way it's calculated, direct health care costs are the actual costs of money spent to provide health care. Okay. The loss of productivity and well-being costs are projections of the difference between what the costs would be if you didn't have vision loss, and what are the costs, the negative impacts on that number. Now that you do have vision loss. So it's a it's a potential reduction right. So it's it's based on the idea that you will you'll find yourself in a position where your independence is is reduced. Well, that's going to have direct effects on you as an individual and on society at large. If you can't get around as well as other people, if you can't operate independently, if you're constantly hitting barriers, you're not going to be as productive, you're not going to be as engaged, and you're not going to you're not going to be able to participate as fully in society as if you had that independence. It's also a loss of productivity in a very direct sense. I know you probably know this, but the employment statistics for people with vision loss are appalling.

Donna J. Jodhan, LLB, ACSP, MBA: Yes.

Ian White: About only about 33% of us actually have gainful employment. And that includes people who are part time and people who are on contract.

Ian White: So which is just about half of the general population. Yeah. And what that means is that our earning potential, our ability to go out and find gainful, meaningful work is negatively impacted by our vision and by the lack of independence, the lack of tools. We have to be able to engage in that kind of work. And it's also a reflection of the stereotypes and stigma that we face in trying to be hired as employees. So there's a there's a direct negative impact on our earning potential. You know, there are people who have experienced vision loss as career professionals. They're fully credentialed. They're, you know, obviously able to do the work up until the point they encounter a vision loss. They go through extensive rehabilitation training. They get all the tools they need, and they get back into the workforce, either at a lower pay scale and a less responsible position, or they find themselves stagnating and not being promoted at the same rate as their sighted peers. And so again, there's an earning potential differential there. Right. So these are all sort of factored into these social costs, the after effects of vision loss. But I think, you know, really one of the things that's, that's really important to understand about about vision loss and disability generally is that if we are constantly facing social barriers that negatively impact our our general participation, and that's right across society, whether it's, you know, engaging in your community, engaging in a pursuit of faith, whether it's pursuing economic activity, whether it's banking, whether it's politics if we're not engaging. And most of us, frankly, are finding that very difficult to do we as a society lose from that. Right? We aren't as fully represented. We aren't as engaged. We our voices aren't heard. And I think from a societal standpoint, that's a real a real challenge. Yeah.

Donna J. Jodhan, LLB, ACSP, MBA: It is.

Ian White: Yeah.

Donna J. Jodhan, LLB, ACSP, MBA: So we just have a few more minutes, and I wanted to just ask you. I know that you have recently stepped away from visionaries you know formerly, right?

Ian White: I am kind of there. I've moved into a past presidents role, so I'm basically an advisor to the group.

Donna J. Jodhan, LLB, ACSP, MBA: Right?

Ian White: Yeah. So.

Donna J. Jodhan, LLB, ACSP, MBA: Ian, what's next for Ian White? What are you what is on the drawing board for Ian White? And how can. I'd like to know more. I'd like to get involved in some way, shape or form.

Ian White: Sure. So one of the things that I've come to realize over the last few years in working with a number of people outside of the visionaries who are really working in sort of the research and advocacy space is that this is sort of the thing that has me most curious right now. So I'm trying to sort of make a transition from sort of a grassroots community The organizer within the blind community to moving into more of an advocacy role and really trying to engage with some of the bigger picture activities that are going on in terms of disability rights advocacy. Moving the needle on things like reforms to the Ontario Assistive Devices Program, which has been a fascinating project. I bet and also being involved in sort of working with a coalition of groups to make submissions to the federal government on Bill C-2 84, which is the national strategy on eye care. Right, right. So these are the kinds of of things that I'm really curious to get involved with and I am involved with. But one of the things that I've realized is that policy makers are a lot more interested in listening to you if you come at them with quantitative data.

Ian White: And solidly researched information that they don't have. Just as an example we did a survey back in 2022. It was published in February on potential reforms to the assistive devices program in Ontario. So for those people who don't know, the Ontario government has a program under the Ministry of Health called Assistive Devices Program, and it actually serves about 18 or 19 different groups of disabilities, one of which is visual aids. What we discovered in doing that survey was that the what we already knew anecdotally was that the system, the program itself was not actually serving the the actual needs of people with vision loss in Ontario. And I could go into a great deal of detail about that, but the upshot was that of the nearly half a million people in Ontario who live with vision loss and are de facto eligible for funding support under that program, only about 1% of them were actually applying for funding support for the devices that are listed under that program. And what that told us was several things. One, the process itself was burdensome from the clients perspective in terms of just getting through the paperwork and and administrative hoops that needed to be jumped through.

Donna J. Jodhan, LLB, ACSP, MBA: Right.

Ian White: The list of products was way out of date and had not been seriously updated, and had not been compared to actual on the ground needs in probably 20 years. The, you know, there were many, many things. There were a whole series of financial barriers to participation. And so we were able, through gathering this direct information from users of the program to identify where we thought the choke points were and sit down in front of the Ontario government and try to engage with them and explain to them why the program, although in principle is a great idea to offer funding support for assistive devices for people with vision loss the execution of it was failing. And I think some of those conversations were constructive. Some of them were less so. But we did manage to at least make some headway on fully funding white canes, which had not been part of the mix. They had white canes on the funded list, but it was a 75, 25 cost split, and the authorization period was every 12 months. And what that meant was, from a client standpoint, you had to go to your eye doctor and get an eye report. That eye report had to be forwarded to an assessor for orientation and mobility. You had to set up an appointment with the O&M to come and assess you, to see if you were still painting properly. And then they would write up some paperwork and submit it to the government, and eventually you'd get a cane.

Ian White: And what we said to them was, look, you know, for anybody who's lost vision and has had orientation and mobility experience with, you know, so they've had the training. They know how to get around. They don't need to go back through that process every 12 months just to get authorization for a cane. Right. Let's expand that window to a five year window to say you only need to get authorized to check on you to make sure you're still okay. Every five years, there will be an annual funding amount available for you to get a new cane. Because honestly, I can bust a cane in a year. So can I And so you have the initial setup where you get authorized, you're authorized for a five year period instead of a one year period. You don't waste the time of the O&M doing for more assessments, and you have funding access for 100% funding access for white canes. Now, that was passed as legislation last November we are still waiting for it to be operationalized. So it's on the books, but it's not actually out yet. We're still poking at them to try and get that done, but yeah, it takes a long time. One of the things that I was told by a long term advocate who's been in the space for a long time is you got to have so much patience. Yeah. You just got to keep at it and keep at it. Keep at it, and eventually things will move.

Donna J. Jodhan, LLB, ACSP, MBA: We are almost out of time. But you know what? I'd like to invite you to return to my podcast. You know, because there's so much more to cover and there's so much more to know about. And I really would like to invite you back sometime in the new year. Would you be interested?

Ian White: I would absolutely be thrilled to do that.

Donna J. Jodhan, LLB, ACSP, MBA: Great, because.

Ian White: I would love to be able to tell you a little bit more about Bill 284 and where that's at. Yeah. I think that's a really, really important piece of legislation in Canada that people need to be more aware of. Yeah. And I'm also hoping to have some news on a new organization that's being set up to focus on eHealth research and that that goes sort of beyond just medical treatment stuff. It's it really gets into rehabilitation and the social impact piece, which is not really being addressed in any coherent way right now.

Donna J. Jodhan, LLB, ACSP, MBA: Look for an invitation from me early in the new year and we will set something up, because you have a lot more to tell us, and I want to thank you for having come on here.

Ian White: It's been an absolute joy. Donna. Thank you.

Donna J. Jodhan, LLB, ACSP, MBA: And, you know, we have enjoyed good times over the years and we will continue to do that.

Ian White: We shall, we shall.

Donna J. Jodhan, LLB, ACSP, MBA: Thank you very much. Enjoy your holiday season. Ian.

Ian White: Thanks, Donna. You too.

Donna J. Jodhan, LLB, ACSP, MBA: And keep on going.

Ian White: Okay.

Donna J. Jodhan, LLB, ACSP, MBA: Okay. Thank you very much. Bye for now.

Ian White: Bye now.

Donna J. Jodhan, LLB, ACSP, MBA: Bye.

Podcast Commentator: Donna wants to hear from you and invites you to write to her at Donna at gmail.com. Until next time.