Latest / Podcasts By Donna Jodhan / Remarkable World Commentary Episode #57: Interview with Ian White, President, CCB Toronto Visionaries

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Remarkable World Commentary Episode #57: Interview with Ian White, President, CCB Toronto Visionaries · Podcasts By Donna Jodhan

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Podcast Commentator: Greetings. Donna J Jodhan, LLB, ACSP and MBA,
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invites you to listen to her biweekly podcast,
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Remarkable World Commentary.
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Here, donna shares some of her innermost thoughts,
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insights, perspectives, and more with her listeners.
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Donna focuses on topics that directly affect the future of kids,
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especially kids with disabilities.
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Donna is a blind advocate, author, site loss coach,
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dinner mystery producer, writer, entrepreneur,
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law graduate, and podcast commentator.
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She has decades of lived experiences, knowledge,
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skills, and expertise in access technology and information as someone who has been
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internationally recognized for her work and roles,
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she just wants to make things better than possible.
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Donna J. Jodhan, LLB, ACSP, MBA: Hello everyone, and welcome to another episode of Remarkable World Commentary.
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I'm Donna Jodhan, a lifelong disability advocate and one who sees the world mainly
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through sound, touch and stubborn optimism.
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I am a law graduate, accessibility consultant,
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author, lifelong barrier buster who also happens to be blind.
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You may know me from a few headline moments.
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In November of 2010, I won the Landmark Charter case that forced the Canadian
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government to make its website accessible to every Canadian,
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not just to sighted ones.
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And in July of 2019, I co-led the Accessible Canada Act with more than two dozen
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disability groups to turn equal access into federal law.
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And most recently, on June 3rd, 2022, I was greatly humbled by Her Late
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Majesty's Platinum Jubilee Award for tireless commitment to removing barriers.
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When I'm not in a courtroom or a committee room or a pottery studio,
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you will find me coaching kids with vision loss,
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producing audio mysteries, or helping tech companies to make their
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gadgets talk back in plain language.
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Everything I do circles one goal to turn accessibility from an afterthought into
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everyday practice. I invite you to think of this show as our shared workbench where
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policy meets lived experience and lived experience sparks fresh ideas.
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Now, before we jump into today's conversation,
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let me shine a spotlight on today's guest, a change maker whose work is every bit as
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remarkable as the world that we are trying to build.
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Ian White, welcome to my remarkable World commentary,
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and it is such a privilege and a pleasure to have you with us.
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Ian White: Thank you so much for inviting me. This is such an honor. Great to be here.
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Donna J. Jodhan, LLB, ACSP, MBA: I am just so tickled that you're here because,
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you know, we've known each other for quite a few years,
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and we've you.
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Ian White: Yeah. Oh, yeah.
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Donna J. Jodhan, LLB, ACSP, MBA: Yeah, we've cooperated on a lot of different things.
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You let me be Mrs. Claus at the Christmas dinners.
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Ian White: A highlight, I must say.
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Donna J. Jodhan, LLB, ACSP, MBA: It was. It was great. It was.
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Ian White: Great fun. It was a lot of fun.
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Donna J. Jodhan, LLB, ACSP, MBA: And then we did the boat cruises and we did other things.
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So, you know, you have done so much for us, our community,
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and you have done a lot for the visionaries as well.
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So welcome aboard.
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Ian White: Thanks so much. As I said, it's such a great honor to be here.
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Donna J. Jodhan, LLB, ACSP, MBA: Thank you. So, Ian, to set the stage for our listeners,
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would you share your journey with Vision Loss and how you pivoted it from a career in
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interior design to building one of the most active vision loss communities in Canada?
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Ian White: Okay brief, brief bio on me.
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So basically, I was born with congenital glaucoma.
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Oh.
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Donna J. Jodhan, LLB, ACSP, MBA: Like me?
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Ian White: Yeah, yeah. And there are a bunch of us out there.
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So as an infant, I had increased intraocular pressure,
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and it was the diagnosis basically was that I would be blind by the time I was one year
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old. And so my parents acted very quickly and got me into some experimental surgery that
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actually decreased the pressures, stabilized them,
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and basically saved my vision.
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So although I grew up quite myopic, I had usable vision and basically grew up
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sighted, so went through the regular school system,
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went through the regular post-secondary education system.
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Got onto a career path.
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I remember as a kid sitting in my ophthalmologist's office and my parents asked
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the question which is like, are there are there things that we should
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guide him away from? There are the things that we should steer him away from because of
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his vision. And I, I don't know how I remember this as a as a kid.
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I must have been 5 or 6 years old.
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And I remember my ophthalmologist saying, let him tell you what he can do.
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Donna J. Jodhan, LLB, ACSP, MBA: Yes.
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Ian White: That was brilliant advice.
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And that's exactly what my parents did for me.
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They allowed me to set the stage and make choices.
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One of the things that was part of my early life was a passion for things.
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Visual. Oddly enough I was deeply interested in art and architecture and reading and
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traveling and a whole bunch of other things that were utterly dependent on vision,
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including my choice of career.
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I ended up going into interior design into the corporate sector.
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So I was I was a designer who was working on large corporate office space,
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doing multi-floor projects in major buildings all over the country,
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working for major institutions, banks, financial institutions,
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insurance companies, all that kind of thing. Up until I was about 40 late 30s,
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early 40s. And at that point I started developing cataracts.
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So we did a very straightforward cataract surgery.
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It was successful, but because of the damage that had been done to my eyes very early on
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in my trajectory the systems in my eye were not as strong as they should have been to
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withstand surgery. And so there were a series of,
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of sort of knock on effects from that.
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And which ultimately resulted in a whole raft of other problems that essentially rendered
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me with only light perception in one eye.
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Donna J. Jodhan, LLB, ACSP, MBA: Oh, gosh.
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Ian White: Okay, so at the age of 40 or so I went from a senior project manager with one of Canada's
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top corporate design firms husband, father, architecture enthusiast to
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being a blind guy. And I honestly don't know.
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I had no idea what to do with that.
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Oh, gosh, I didn't I didn't know any blind people.
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I had no idea what was possible for me.
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I had imbibed over my sighted trajectory all of the biases and stereotypes that are
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common in our socialization that people with disabilities are broken,
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that they're incapable, that they can't, can't,
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can't. And that was how I was viewing myself through that transition period.
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And it was really only through getting connected with blindness related
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organizations and ultimately with the blind community,
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that I realized that the possibilities are endless.
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The only thing wrong with me is that I don't see the way most people do.
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Everything. Everything else is just fine.
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Thank you. So so I ended up doing some experimental adventures in
9:14
post-secondary education again.
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I actually completed a second degree and got involved as a volunteer with organizations
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like the Cnib. Was a peer mentor coming out of their New Beginnings program,
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which spawned a peer support group that came off the back end of one of those groups.
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And that was just an opportunity to connect with other blind people on a regular basis,
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talk about what mattered to them.
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Explore possibilities with them and really push myself to learn about.
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What was out there and how to get connected with it.
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That spun in 2013 into Forming a chapter under the Canadian Council of the blind,
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which is a national registered charity with about.
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I think they have about 75 or 80 chapters across the country.
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And these chapters are all locally organized and volunteer driven.
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So it was an opportunity for us to sort of get more formally organized and,
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and really open up to the blind community here in Toronto,
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where I live. We grew that chapter from an initial membership of about 20 people.
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We now have about 170 regular members and went from doing a single two hour meeting
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once a month to I think there are about a dozen and a half Regular activities that we
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do through the month. And then on top of that,
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we do a number of special events.
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We do boat cruises, we do the White Cane, we Experience Expo,
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which we'll talk about a little later. We do you know,
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going out to restaurants and cultural institutions and exploring those and it's
11:05
become quite a thing, which has been a.
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Donna J. Jodhan, LLB, ACSP, MBA: Lot of fun. Yeah. Yeah, yeah.
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It has.
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Ian White: So that's, that's kind of the, the trajectory.
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And it's put me into a place where I can, you know,
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I've sort of gone from my past life as a corporate interior designer through a very
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dark period where I had no idea what to make of myself and had to reinvent my identity,
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to now seeing myself as more of a community leader and an advocate.
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Donna J. Jodhan, LLB, ACSP, MBA: And a lot more than that, if I should say, I am absolutely impressed by
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your story.
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Ian White: Thank you.
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Donna J. Jodhan, LLB, ACSP, MBA: Yeah. So you helped to grow a peer support circle into the CCB?
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Toronto visionaries. What problem were you trying to solve at the beginning?
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And how has the chapter's mission of breaking isolation evolved over the years?
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Ian White: So one of the things that I recognized very early on in my career as a blind person is
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that in Toronto, particularly, we are we are blessed with an amazing array
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of possibilities, whether it's recreational groups,
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service providers you know, places where you can get test and train on
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assistive tech. There's a great, you know public transit system here so you
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can get around there are all kinds of of activities that are available to the blind
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community. But what I realized really early on was that the information was all sort of
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siloed. It was, you know, these people would go tandem cycling,
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but these people didn't know that there was also a bowling group,
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or there was also a downhill skiing group.
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Do you know what I mean? Like that? Yes. And the skiing group didn't know about the tandem
13:00
cyclers. So one of the things that that through this sort of discovering what was
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available and what was possible I came to realize that that there was a whole bunch of
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information out there and nobody knew how to get at it.
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Right. So, so the idea initially was really just to share information with the group that
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we had. It started out as a very small group,
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as I said. But what was interesting about it was the curiosity,
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especially for people who are relatively new to vision loss and really didn't know what
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was possible, right? Right.
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They would eagerly seek out this information.
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And if we could bring it together in a, in a sort of a relaxed social setting and
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just, you know, throw it out there and say, hey, look, this is a thing that blind people
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do and this is how you do it.
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And we get the, you know, the people who were organizing that activity
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in to talk about it and how much fun it is and where you go to get it and how much it
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costs, and yada, yada, yada.
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And we found that people really responded to that.
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And I think the other thing that that was really vital was that we weren't a service
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provider, we weren't a training service.
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We weren't a. We were just an opportunity for people to get together and be social with
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each other, you know, and to have fun.
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Because a lot of the the programs that were on deck at the time that we were getting
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started were We're very much, you know objective delivery,
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kind of measured programs.
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They were you know, of a set length you'd go for 6 or 8 weeks,
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you'd have certain objectives in terms of what you were supposed to learn. You had to
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demonstrate that you learned them, and then they'd cut you loose.
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Then what do you do? So what we realized pretty early on was that in order to create
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spaces for people to come together and absorb all this information that we were sharing,
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the easiest way to do that was just exactly that.
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It was to create little social spaces, right?
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Perhaps with an excuse whether it's a, you know,
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a formal meeting or whether it's at a pub or whether it's going out to on a tour of a,
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you know, a venue or something.
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But what happens when you bring blind people together?
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And I'm sure this is true of most disability groups.
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What ends up happening is that the blindness piece just sort of disappears and people
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engage with each other just as people.
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Donna J. Jodhan, LLB, ACSP, MBA: Right.
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Ian White: Right. And you can suddenly talk about, you know,
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the things that you're struggling with or the frustrations you're having because you're
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talking to people who get it.
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You know, you're talking to others who have already been down that road,
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have probably already solved the problem that you're struggling with,
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and can give you some really great advice on how to take next steps.
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And that happens just casually in a social environment.
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And so that's what we tried to create was a series of opportunities for people to come
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together and just share information with each other,
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share questions, share frustrations, share their concerns,
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talk about what works, what doesn't.
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And and we found that was a really powerful formula.
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So I think in terms of what we were able to create,
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it sort of comes in two two flavors.
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One was you just create space for those social opportunities to happen so people can
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get together and have some fun with other people who they don't have to explain
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themselves to. You know, you don't have to apologize for being blind.
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Everybody in the room is blind. If somebody knocks over a drink,
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everybody goes, yeah, okay, where are the paper towels?
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You know, it's not a big deal, right?
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Right. And and the other piece of it was the information sharing piece.
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So one of the things that I found particularly fascinating about being one of
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the instigators of this whole affair was just being able to exercise my curiosity about
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what was possible. You know, what's out there?
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What what are people willing to do to to meet us halfway and,
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you know, afford us the kind of opportunity that is meaningful for for people who aren't
17:25
really sure what's possible, what's available and what's accessible.
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Donna J. Jodhan, LLB, ACSP, MBA: Right?
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Ian White: Yeah.
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Donna J. Jodhan, LLB, ACSP, MBA: Congratulations on the June Callwood Award for your outstanding achievement award.
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And the visionary and the visionaries ten year milestone.
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Now, what do those recognitions say about the model you've built,
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and what were the turning points that made it work?
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Ian White: I think really it was really just about creating space for people and,
18:09
and engaging them as people instead of engaging them as blind people.
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Being, being do you know what I mean, though? Like being curious about them as
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people. What are your interests? What do you like to do? What are you what would you
18:21
rather be doing? You know, what kind of restaurants do you like?
18:27
What kind of activities do you do you love to get involved with?
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What do you do for work?
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You know and, and just having the opportunity to engage with a whole range of people
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because, as you know, like eye disease and blindness don't really
18:45
care where you're from or what you do for a living.
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Donna J. Jodhan, LLB, ACSP, MBA: No, they don't discriminate.
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Ian White: They really don't. And so you get this really fascinating mix of people in a room who are
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coming from all kinds of different backgrounds,
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all kinds of different socioeconomic strata all kinds of education levels.
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And it's fascinating to just dive in and go, okay,
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so this is me. Who are you?
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Donna J. Jodhan, LLB, ACSP, MBA: Absolutely. Yeah.
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Ian White: It's a lot of fun. And, and I think the opportunity for us to learn
19:14
from each other because, as I said, you know, one of the things that
19:16
was huge for me was getting connected with people who had been blind for a while,
19:21
had already been down that road, you know, and knew what I was struggling with
19:25
and could help me guide me on my next steps along my journey.
19:33
But really, I think the fundamental thing was the recognition for social engagement. You
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know, it was the it was the opportunity for people to get together.
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No pressure. You know, you're not you're not under the gun.
19:43
You're not being measured. You're just coming together to have some fun with other people
19:47
who get it. And to just explore a wide variety of options and access a whole raft
19:54
of, of information about what's possible.
19:57
The chapter itself grew pretty organically, actually.
20:01
Because we started very small and with very few resources.
20:04
It took a while to sort of build capacity, but you know,
20:09
as ideas came up, we would explore them.
20:11
We would see what we could do.
20:13
I became really shameless about asking for stuff.
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Donna J. Jodhan, LLB, ACSP, MBA: I know that, yeah.
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Ian White: Whether, you know, whether it was a free room rental or,
20:22
you know, could could we organize something with a caterer where we're just paying them
20:26
for their food costs, and maybe they're donating their time, like
20:29
all these kinds of things that would really reduce the cost of of getting us off the
20:33
ground. And we were very fortunate because we encountered a number of very generous donors
20:38
who came forward with some financial resources.
20:41
And and so the the more resources we had, the more people got involved.
20:47
The more volunteers we engaged, the more financial backing we had,
20:52
the the greater the reach we could have.
20:55
And so that allowed us to really branch out and explore a whole bunch of stuff that that
21:00
initially would have been beyond our means.
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But but yeah, I always operated on the basic theory of,
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you know, if you don't ask, you won't get. So you must ask.
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Donna J. Jodhan, LLB, ACSP, MBA: Ask and you shall receive.
21:11
Yeah.
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Ian White: Yeah. Exactly.
21:15
Donna J. Jodhan, LLB, ACSP, MBA: So for listeners who've never attended and I'm one of those paint an audio picture of
21:22
the White Cane Week. It's a it's an experience.
21:29
It's an expo. Okay.
21:30
Ian White: Yeah.
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Donna J. Jodhan, LLB, ACSP, MBA: What happens there? What makes it unique?
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And what kind of real world outcomes have you seen?
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Ian White: So this this whole idea was generated out of this notion of wanting to share as much
21:51
information as possible about what was available in the Toronto area for for people
21:56
in the blind community. And so the the idea was basically like a trade show.
22:01
But it comes in sort of three parts, and each part sort of feeds into three
22:07
different aspects of what we do.
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So initially the expo itself, it's essentially a trade show.
22:12
It's we gather together.
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I think we've had between sort of 35 and 50 exhibitors,
22:21
depending on the year, who will set up a table and just be available
22:25
to either show their products or describe their services,
22:29
or help people get connected or have an experience.
22:34
And all of these organizations are in some way supporting the blind community.
22:40
So we would have people come together from advocacy,
22:45
from education, from workplace and employment from service providers assistive technology
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vendors clubs, sports groups everything and anything like the Toronto Public Library
23:02
would come and talk about their accessible services.
23:05
The TTC would be there to talk about Wheel-trans and its services,
23:10
and how they're implementing accessibility throughout the TTC network,
23:13
the Toronto transit community.
23:16
So it was it was really a wide range of different kinds of organizations,
23:22
but all of which sort of feed into this whole experience of living with vision loss.
23:27
And the whole idea of it was to bring together all this information in one place at
23:31
one time. So you as an individual could go in and just discover,
23:36
right? Just discover what's available and see possibilities that you might not have thought
23:43
were possible. I remember having a conversation at the very first expo we did
23:49
with a guy from an organization called the Ice Owls,
23:53
which is a blind hockey team.
23:56
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, I know them. So.
23:57
Ian White: So these guys, these guys are talk about fearless.
24:02
These guys are absolutely fearless.
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They are blind and visually impaired hockey players.
24:08
And they compete both locally and nationally.
24:13
And they go at speed on ice, on blades after a puck that is filled with
24:20
sort of nuts and bolts and a bunch of things that make it rattle as it moves.
24:24
So they can track it. And I don't know how they do it.
24:29
I have no idea.
24:30
Donna J. Jodhan, LLB, ACSP, MBA: I know how they do it. They belted me across the the ice rink one time.
24:35
Ian White: Oh, did they really? Yeah.
24:36
Okay.
24:36
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah. So keep on.
24:38
Ian White: Going. No, I you know, it's it's one of those things like,
24:42
I've, I've met so many people through this journey who have just blown my mind.
24:46
I've talked to people who have, you know, run the Boston Marathon twice.
24:52
I know people who have crewed on a tall ship in the South Pacific for five months.
24:57
I know, I know a guy whose favorite activity is to go scuba diving and explore sunken
25:03
wrecks, all totally blind.
25:07
And once you've met people like that.
25:10
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
25:11
Ian White: You sort of look at yourself and go you know,
25:14
maybe getting to the corner store is doable.
25:18
Donna J. Jodhan, LLB, ACSP, MBA: Absolutely.
25:19
Ian White: You know. Yeah. So I want to talk about the other two parts.
25:23
So that's the the expo.
25:24
It's just an opportunity to come in and smorgasbord your brains out and and discover
25:30
the second part is the forum.
25:33
So the forum is basically a panel discussion,
25:35
and this is sort of the information sharing another aspect of the information sharing
25:39
piece. So what we would do is we would bring together a panel of experts on a particular
25:44
subject or topic and have them sort of give us a state of the nation,
25:50
like what's going on in assistive tech, what's going on in,
25:55
you know government advocacy, what's going on in the latest sort of medical
26:01
research, what's going on in whatever aspect it is that has to do with,
26:07
you know, something important about living with vision loss and something that that is
26:11
important to the community to to know and understand.
26:14
And we would do that both in person and online,
26:17
so that people who couldn't make it down to the show could also get that information.
26:22
And then the third piece was a social dinner.
26:26
And that really speaks to the social having fun piece of,
26:28
of of what we do. And it was really just an opportunity to say thank you to the community
26:34
to celebrate you know, who we are and what we do in all its crazy
26:39
diversity and just enjoy each other's company and have fun for an evening.
26:43
So so that was that sort of gives you a snapshot of what the expo is all about,
26:48
right? I think it's unique because of the breadth of the exhibitors,
26:51
the the range of things that were present there that you could explore.
26:58
And and I think just allowing attendees to come away better informed than they were
27:04
before, just having a little more information about what's out there and what's possible.
27:09
Donna J. Jodhan, LLB, ACSP, MBA: Wonderful. Now you co-founded the Toronto, US getting together with technology.
27:20
What gap does it fill between formal training and everyday life?
27:27
And can you share a concrete example of someone's tech problem that the group helped
27:34
to solve?
27:37
Ian White: Yeah. The Get Together with technology program is an amazing program.
27:41
It's actually a national program that was initiated by a lady named Kim Kilpatrick in
27:47
Ottawa. Probably what 12, 15 years ago.
27:54
And it was supported by the ECB, the Canadian Council of the blind and rolled
27:59
out through a number of groups that operate across the country.
28:05
I was intrigued by this.
28:08
And with a couple of co-conspirators, set up the Toronto incarnation of it.
28:13
And really, the idea here, which is kind of unique,
28:16
is, again, it's very grassroots, very sort of bottom up organized.
28:20
So what it essentially is, is it's a group of assistive technology users
28:26
at various levels, from absolute novice to absolute expert.
28:33
You bring them together in a room and you just cut them loose and let them talk.
28:39
And what ends up happening there is that a lot of information gets shared about what
28:45
technology is out there, where you can get it,
28:50
what it costs, how to get trained on it, tips and tricks about how to use it,
28:57
and troubleshooting. If if somebody's got a piece of tech and they don't,
29:02
they they get stuck on something.
29:06
You know, whether it's, trying to figure out how to use a particular
29:09
app or, you know, even just getting the accessibility features on your smartphone set
29:14
up properly. There's a forum where you can bring those questions to a group and just
29:22
throw it out and say, has anybody encountered this problem?
29:25
And if you have, do you have any solutions for it?
29:28
And you'd be amazed how many people go, yeah,
29:30
yeah, I got that. And so it's a real sort of opportunity to again share information,
29:38
bring in people who are connected to the assistive technology space and have them talk
29:45
about a particular product or a line of products or,
29:47
or you know training services that are available.
29:53
And and really just give people the opportunity to share the knowledge that they
29:59
possess you know there are people who are really,
30:04
really good at assistive tech and there are people who really struggle with it.
30:09
So it's great to be able to say, you know, there are all these tools out there
30:12
that blind people can use, but if you're one of those people who is
30:15
really technophobic or you don't, you just your mind doesn't work in a way that
30:20
allows you to grasp the how to easily.
30:25
Then it's really, really helpful to be able to get into a space and not feel embarrassed
30:30
about asking those simple questions about how to how to use it better.
30:35
Because every time you do, every time you, you sort of gain a piece of
30:39
information about how to use an assistive tool,
30:43
you open your world up a little bit further and you reclaim a little of your
30:47
independence. Right? And I think that's the real power of the DTT groups.
30:52
It's not a fixed term training session.
30:55
It's it's really open, really dynamic.
30:58
And and allows people to explore assistive tech sort of at their own pace.
31:05
Yeah. Wow. Sorry. Sorry.
31:10
Just before you. Before you jump on, I wanted to mention you asked about whether I
31:14
had seen any particular instances of of people's lives being opened up that way.
31:20
I think there are a couple of things. And I'm going to speak in sort of general terms
31:25
initially, but I'll drill down a little bit.
31:29
One of the things that was discovered during a survey we did a few years ago looking for
31:37
information on people's experiences with the assistive device program in Ontario.
31:43
One of the things one of the questions we asked was, what is your most powerful,
31:47
most necessary assistive tool?
31:52
76% of people said the smartphone.
31:55
Donna J. Jodhan, LLB, ACSP, MBA: Really? I'm not surprised.
31:57
Ian White: Yeah, I'm not either. And a lot of that is because Smartphones allow you to connect to
32:05
an entire digital world using accessibility features that are baked into the device.
32:11
Right? And then it acts as a platform for all the tools that have been specifically
32:17
designed to run on that platform.
32:19
So there are all kinds of applications and programs that are specifically designed to
32:25
help blind people that will only run on a smartphone.
32:30
So getting to grips with a smartphone is a huge game changer for a lot of people.
32:38
Even just in terms of being able to connect and communicate with family,
32:43
you know, friends, your social network, your,
32:45
you know your employment network and so many of the tools are,
32:52
are are really great. Whether it's for navigation or optical character recognition
32:57
or image description. These are all tools that are specifically designed to run on a
33:03
smartphone. Combined with that, one of the recent things that everybody's
33:08
already talking about and is becoming a real game changer in the marketplace is smart
33:15
glasses. Paired. Paired to your smartphone.
33:18
And what that allows you to do is basically hands free,
33:22
have access to an AI assistant that can do everything from image description to connect
33:30
you to an agent who can assist you.
33:34
It can, you know, there's just so many applications that are directly relevant to
33:39
overcoming visual barriers that we encounter every day.
33:43
And there's something you can wear on your head paired to your smartphone.
33:48
And it's so simple and so easy.
33:50
And, and people have just raved about how useful these tools are.
33:57
Yeah.
33:58
Donna J. Jodhan, LLB, ACSP, MBA: Thank you, Steve Jobs.
33:59
A.
34:00
Ian White: Amen, brother. Yeah. I mean you know, between Apple and Android.
34:10
Yeah, they've they've moved the world for, for people with visual disabilities.
34:14
Absolutely.
34:15
Donna J. Jodhan, LLB, ACSP, MBA: By leaps and bounds. Yeah.
34:17
Ian White: Yeah yeah.
34:19
Donna J. Jodhan, LLB, ACSP, MBA: Now you often point people to the Deloitte cost of vision loss in Canada study.
34:28
And especially you know to its executive summary.
34:35
What are the headline numbers that listeners should know.
34:41
And what does the report project if nothing changes by 2050.
34:49
Ian White: So this was a study that was undertaken in I think 2021 by a consortium of of groups
34:59
led by research professional doctor Keith Gordon.
35:04
And basically it was a study that was sort of a reprise of one that had been done many,
35:11
many years ago in around 2007, hadn't been updated since.
35:17
And we know that the population has grown society has changed.
35:23
The health care system has changed.
35:25
There are all kinds of things that were no longer relevant from the 2007 study.
35:30
So the idea was to to take a really hard look at,
35:35
okay, what are the actual impacts of vision loss on Canadian society and what can be
35:42
associated with those impacts?
35:45
And and why should we be concerned about that?
35:48
Well, what the study basically showed was that the cost of vision loss in Canada
35:53
annually is about $33 billion, right?
35:58
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
35:59
Ian White: That's why we should take it seriously.
36:01
Right now. Of that 33 billion over 15 billion of it is direct healthcare costs.
36:08
So that's going to your optician, going to your optometrist getting treatment.
36:14
And, you know, if you have surgery or if you have lasers,
36:17
if you have, you know injections, whatever it is that they're doing to,
36:22
to treat you in a healthcare setting. Those are the costs that are captured under that 15
36:27
billion. Then the other half and actually the larger half was over $17 billion in what are
36:35
called lost well-being or lost productivity costs.
36:38
And what that means is, once you encounter vision loss things like
36:47
your ability to continue earning becomes negatively impacted.
36:54
Your ability to support your family becomes negatively impacted.
36:58
Your social relationships and community networks degrade because people with
37:06
disabilities, and particularly vision disabilities, tend to isolate and be caused
37:12
by family. And taken care of.
37:15
Because, again, unless you pursue an active program of of building your independence back
37:24
and sort of engaging with your blindness in a way that that sort of masters it and gets you
37:32
back out into community.
37:36
There's a tendency for people to sort of withdraw and not participate.
37:41
So there are negative impacts on family and friends and social networks.
37:46
There are negative impacts on your participation in everything from economics to
37:53
education to employment to, you know, paying your taxes.
37:58
And these are all sort of negative impacts that fall out of living with blindness.
38:04
They also ramify into future negative health impacts.
38:10
So people with vision loss are more likely to die earlier than sighted people.
38:17
They're more. Likely. They're more likely to have falls,
38:21
which put them in hospital.
38:23
Right? They're more likely to be referred earlier than they normally would be to a home
38:30
care setting. Or a, you know, a formal senior's residence or support
38:38
facility. They are much more likely to make mistakes around prescriptions and get into
38:45
trouble that way. I did.
38:48
You know, it what happens to a lot of us?
38:50
Yes. Because, you know, how do you overcome the barrier of trying to
38:53
read the dosage, you know, on a particular medication or even make sure
38:58
that you have the right medication in your hand when you're when you're administering
39:02
it. Right. There are ways, but a lot of people don't know them.
39:07
So there are a whole series of, of sort of knock on effects that happen.
39:12
That again, is part of that, that 17 billion.
39:14
So the, the so basically what the study does is it separates the direct healthcare costs
39:23
from those social costs and, and itemizes them individually and tries to
39:30
suggest that they be dealt with in concert so that,
39:35
you know, any strategy that, that tries to improve health care delivery or
39:41
the negative impact that the cost to society of vision loss in Canada would be more
39:47
successful.
39:50
Donna J. Jodhan, LLB, ACSP, MBA: Do you think we need to build more awareness and educate society about this topic?
39:57
Ian White: Yes, absolutely. We'll we'll get into this in a little bit.
40:03
But you know, there is so much misinformation or lack of information about what it means to
40:12
live with blindness. There are so many assumptions that are projected onto us from
40:19
sighted people based on the fear of what they feel they could not do if they were in our
40:25
position. It's actually grounded in empathy, believe it or not.
40:30
But it's but it's empathy without information.
40:33
So the the problem is, and I've had this conversation with I can't
40:38
imagine how many people where, you know, someone will approach me on a
40:42
sidewalk and congratulate me Yes, and be amazed that I am walking down a
40:48
sidewalk.
40:49
Donna J. Jodhan, LLB, ACSP, MBA: I know I've had that happen to me.
40:51
Ian White: Well, and again, it comes from a good place in that what that person is doing is they're
40:55
saying, if I were to cover my eyes right now,
40:58
yeah. Would I be able to do what you're doing?
41:01
And the answer is no. Right.
41:03
And what they don't realize is that I've been doing this for 25 years now.
41:07
I've had specific orientation and mobility training to make sure that I can do it
41:11
safely. I've been given the tool with which to do it,
41:14
which is my white cane.
41:17
And I've practiced and practiced and practiced and practiced.
41:20
So yeah, I'm pretty good at going down the sidewalk.
41:23
But again, it's this disconnect between what people think we're capable of and what we're
41:29
actually capable of. Right.
41:31
And and that, you know, piece of public awareness,
41:35
if we could get that across you know, just open people up to the possibility of
41:42
what we're capable of, I think would be a huge,
41:45
huge thing. And on top of all of that is to really stress that you need to take care of
41:54
the site you have. You need to be aware that and not take it for granted.
42:00
You need to get in and get an eye exam because a lot of the the diseases that affect
42:06
your eyesight.
42:07
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
42:08
Ian White: Are there and working away long before you ever realize there's a problem.
42:15
And they can be diagnosed and treatment interventions can be implemented long before
42:22
you start to lose vision.
42:25
Screen Reader: New notification from.
42:26
Donna J. Jodhan, LLB, ACSP, MBA: Right.
42:27
Ian White: You know, so you can actually stave off a lot of the negative impacts of vision of eye
42:35
disease by early diagnosis and aggressive treatment.
42:41
And so So you can actually save a lot of vision.
42:44
And again we'll get into the importance of prevention and and what's been.
42:51
What's been put together in terms of trying to make that happen. Yeah.
42:56
Donna J. Jodhan, LLB, ACSP, MBA: My poor old clock is starting to tell me time is winding down.
42:59
But. Oh dear I wanted to ask you this question.
43:03
Yeah. The report separates financial costs from loss of well-being.
43:10
All right. In plain language, what does loss of well-being mean?
43:17
And why should policymakers and the public take that part of the cost as seriously as
43:26
dollars and cents?
43:29
Ian White: So in in very straightforward terms the difference between the two,
43:35
the way it's calculated, direct health care costs are the actual costs
43:39
of money spent to provide health care.
43:42
Okay. The loss of productivity and well-being costs are projections of the difference
43:48
between what the costs would be if you didn't have vision loss,
43:54
and what are the costs, the negative impacts on that number.
43:58
Now that you do have vision loss.
44:00
So it's a it's a potential reduction right.
44:04
So it's it's based on the idea that you will you'll find yourself in a position where your
44:12
independence is is reduced.
44:14
Well, that's going to have direct effects on you as an individual and on society at large.
44:21
If you can't get around as well as other people,
44:23
if you can't operate independently, if you're constantly hitting barriers,
44:27
you're not going to be as productive, you're not going to be as engaged, and you're
44:30
not going to you're not going to be able to participate as fully in society as if you had
44:37
that independence. It's also a loss of productivity in a very direct sense.
44:44
I know you probably know this, but the employment statistics for people with
44:50
vision loss are appalling.
44:52
Donna J. Jodhan, LLB, ACSP, MBA: Yes.
44:53
Ian White: About only about 33% of us actually have gainful employment.
44:57
And that includes people who are part time and people who are on contract.
45:02
So which is just about half of the general population.
45:10
Yeah. And what that means is that our earning potential,
45:14
our ability to go out and find gainful, meaningful work is negatively impacted by our
45:20
vision and by the lack of independence, the lack of tools.
45:23
We have to be able to engage in that kind of work.
45:28
And it's also a reflection of the stereotypes and stigma that we face in trying to be hired
45:34
as employees. So there's a there's a direct negative impact on our earning potential.
45:43
You know, there are people who have experienced vision loss as career
45:47
professionals. They're fully credentialed.
45:49
They're, you know, obviously able to do the work up until the point they encounter a
45:54
vision loss. They go through extensive rehabilitation training.
45:57
They get all the tools they need, and they get back into the workforce,
46:02
either at a lower pay scale and a less responsible position,
46:07
or they find themselves stagnating and not being promoted at the same rate as their
46:12
sighted peers. And so again, there's an earning potential differential
46:15
there. Right. So these are all sort of factored into these social costs,
46:22
the after effects of vision loss.
46:26
But I think, you know, really one of the things that's,
46:28
that's really important to understand about about vision loss and disability generally is
46:35
that if we are constantly facing social barriers that negatively impact our our
46:42
general participation, and that's right across society,
46:45
whether it's, you know, engaging in your community,
46:47
engaging in a pursuit of faith, whether it's pursuing economic activity,
46:52
whether it's banking, whether it's politics if we're not engaging.
46:58
And most of us, frankly, are finding that very difficult to do we as a
47:04
society lose from that.
47:08
Right? We aren't as fully represented.
47:11
We aren't as engaged. We our voices aren't heard.
47:17
And I think from a societal standpoint, that's a real a real challenge.
47:22
Yeah.
47:25
Donna J. Jodhan, LLB, ACSP, MBA: It is.
47:26
Ian White: Yeah.
47:27
Donna J. Jodhan, LLB, ACSP, MBA: So we just have a few more minutes, and I wanted to just ask you.
47:31
I know that you have recently stepped away from visionaries you know formerly,
47:36
right?
47:37
Ian White: I am kind of there. I've moved into a past presidents role,
47:41
so I'm basically an advisor to the group.
47:43
Donna J. Jodhan, LLB, ACSP, MBA: Right?
47:44
Ian White: Yeah. So.
47:46
Donna J. Jodhan, LLB, ACSP, MBA: Ian, what's next for Ian White?
47:49
What are you what is on the drawing board for Ian White?
47:53
And how can. I'd like to know more.
47:56
I'd like to get involved in some way, shape or form.
47:59
Ian White: Sure. So one of the things that I've come to realize over the last few years in working
48:05
with a number of people outside of the visionaries who are really working in sort of
48:13
the research and advocacy space is that this is sort of the thing that has me most curious
48:22
right now. So I'm trying to sort of make a transition from sort of a grassroots
48:29
community The organizer within the blind community to moving into more of an advocacy
48:36
role and really trying to engage with some of the bigger picture activities that are going
48:43
on in terms of disability rights advocacy.
48:47
Moving the needle on things like reforms to the Ontario Assistive Devices Program,
48:53
which has been a fascinating project.
48:56
I bet and also being involved in sort of working with a coalition of groups to make
49:05
submissions to the federal government on Bill C-2 84,
49:09
which is the national strategy on eye care.
49:12
Right, right. So these are the kinds of of things that I'm really curious to get
49:17
involved with and I am involved with.
49:20
But one of the things that I've realized is that policy makers are a lot more interested
49:27
in listening to you if you come at them with quantitative data.
49:33
And solidly researched information that they don't have.
49:41
Just as an example we did a survey back in 2022.
49:47
It was published in February on potential reforms to the assistive devices program in
49:54
Ontario. So for those people who don't know, the Ontario government has a program under
49:58
the Ministry of Health called Assistive Devices Program,
50:01
and it actually serves about 18 or 19 different groups of disabilities,
50:05
one of which is visual aids.
50:09
What we discovered in doing that survey was that the what we already knew anecdotally was
50:15
that the system, the program itself was not actually serving the the actual needs of
50:21
people with vision loss in Ontario.
50:25
And I could go into a great deal of detail about that,
50:29
but the upshot was that of the nearly half a million people in Ontario who live with
50:35
vision loss and are de facto eligible for funding support under that program,
50:40
only about 1% of them were actually applying for funding support for the devices that are
50:47
listed under that program.
50:49
And what that told us was several things.
50:51
One, the process itself was burdensome from the clients perspective in terms of just
50:57
getting through the paperwork and and administrative hoops that needed to be jumped
51:01
through.
51:02
Donna J. Jodhan, LLB, ACSP, MBA: Right.
51:03
Ian White: The list of products was way out of date and had not been seriously updated,
51:08
and had not been compared to actual on the ground needs in probably 20 years.
51:15
The, you know, there were many, many things.
51:18
There were a whole series of financial barriers to participation.
51:23
And so we were able, through gathering this direct information from users of the program
51:33
to identify where we thought the choke points were and sit down in front of the Ontario
51:38
government and try to engage with them and explain to them why the program,
51:45
although in principle is a great idea to offer funding support for assistive devices
51:51
for people with vision loss the execution of it was failing.
51:57
And I think some of those conversations were constructive.
52:00
Some of them were less so.
52:03
But we did manage to at least make some headway on fully funding white canes,
52:09
which had not been part of the mix.
52:12
They had white canes on the funded list, but it was a 75,
52:15
25 cost split, and the authorization period was every 12 months.
52:21
And what that meant was, from a client standpoint,
52:23
you had to go to your eye doctor and get an eye report.
52:26
That eye report had to be forwarded to an assessor for orientation and mobility.
52:30
You had to set up an appointment with the O&M to come and assess you,
52:33
to see if you were still painting properly.
52:37
And then they would write up some paperwork and submit it to the government, and
52:40
eventually you'd get a cane.
52:43
And what we said to them was, look, you know,
52:46
for anybody who's lost vision and has had orientation and mobility experience with,
52:51
you know, so they've had the training. They know how to get around. They don't need to go
52:56
back through that process every 12 months just to get authorization for a cane.
53:00
Right. Let's expand that window to a five year window to say you only need to get
53:07
authorized to check on you to make sure you're still okay.
53:10
Every five years, there will be an annual funding amount available for you to get a new
53:16
cane. Because honestly, I can bust a cane in a year.
53:20
So can I And so you have the initial setup where you get authorized,
53:28
you're authorized for a five year period instead of a one year period.
53:31
You don't waste the time of the O&M doing for more assessments,
53:35
and you have funding access for 100% funding access for white canes.
53:41
Now, that was passed as legislation last November we are still waiting for it to be
53:48
operationalized. So it's on the books, but it's not actually out yet.
53:54
We're still poking at them to try and get that done,
53:59
but yeah, it takes a long time.
54:02
One of the things that I was told by a long term advocate who's been in the space for a
54:09
long time is you got to have so much patience.
54:13
Yeah. You just got to keep at it and keep at it.
54:17
Keep at it, and eventually things will move.
54:21
Donna J. Jodhan, LLB, ACSP, MBA: We are almost out of time.
54:24
But you know what? I'd like to invite you to return to my podcast.
54:29
You know, because there's so much more to cover and there's so much more to know about.
54:34
And I really would like to invite you back sometime in the new year.
54:38
Would you be interested?
54:40
Ian White: I would absolutely be thrilled to do that.
54:43
Donna J. Jodhan, LLB, ACSP, MBA: Great, because.
54:44
Ian White: I would love to be able to tell you a little bit more about Bill 284 and where that's at.
54:49
Yeah. I think that's a really, really important piece of legislation in
54:53
Canada that people need to be more aware of.
54:57
Yeah. And I'm also hoping to have some news on a new organization that's being set up to
55:03
focus on eHealth research and that that goes sort of beyond just medical treatment stuff.
55:12
It's it really gets into rehabilitation and the social impact piece,
55:19
which is not really being addressed in any coherent way right now.
55:24
Donna J. Jodhan, LLB, ACSP, MBA: Look for an invitation from me early in the new year and we will set something up,
55:29
because you have a lot more to tell us, and I want to thank you for having come on
55:33
here.
55:35
Ian White: It's been an absolute joy. Donna. Thank you.
55:37
Donna J. Jodhan, LLB, ACSP, MBA: And, you know, we have enjoyed good times over the years and we will continue to do
55:41
that.
55:42
Ian White: We shall, we shall.
55:44
Donna J. Jodhan, LLB, ACSP, MBA: Thank you very much. Enjoy your holiday season.
55:47
Ian.
55:48
Ian White: Thanks, Donna. You too.
55:50
Donna J. Jodhan, LLB, ACSP, MBA: And keep on going.
55:51
Ian White: Okay.
55:52
Donna J. Jodhan, LLB, ACSP, MBA: Okay. Thank you very much.
55:55
Bye for now.
55:57
Ian White: Bye now.
55:58
Donna J. Jodhan, LLB, ACSP, MBA: Bye.
56:01
Podcast Commentator: Donna wants to hear from you and invites you to write to her at Donna at gmail.com.
56:07
Until next time.