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In this insightful episode of Remarkable World Commentary, Donna J. Jodhan sits down with global advocate Diane Bergeron to trace a life shaped by retinitis pigmentosa, guide dogs, and a tireless commitment to system change. Diane explains how losing vision by her mid thirties taught her that no one accommodation fits everyone, and how working with guide dogs sharpened a leadership style that sets the destination while inviting the team to chart the route. She connects early municipal work in Edmonton to provincial advising and national advocacy, then to a global dashboard through the World Blind Union, where she confronted stark regional contrasts in funding, women’s equity, and youth leadership. Listeners also meet Lucy, the sock-stealing guide dog who turned packing into a comic ritual, and the story becomes a doorway into Diane’s larger message about preparation, resilience, and grace under pressure.
Now leading international partnerships, Diane outlines three priorities: sharing effective programs across borders, aligning standards, and building capacity in the Global South. She and Donna press hard on accessible voting, arguing that Canada must move past paper and pilot secure, verifiable options that deliver privacy and independence for all voters. Diane demystifies guide dog programs for businesses and transit providers, from genetics and training to the ethics of access, reminding leaders that refusing the dog is refusing the person. She closes with counsel for future advocates: know your audience, change attitudes first, and be ready to use every tool available, from quiet collaboration to legislation, until equal access is real.
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 Jodhan, LLB, ACSP, MBA: Hello everybody, 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 websites 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 churn equal access into federal law and most recently on June 3rd, 2022. I was extremely 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’ll 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 A 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. Diane Bergeron or Diane Bergeron, AKA Di. Welcome to my My Remarkable World commentary podcast.
Diane Bergeron: Hello, Donna. Thanks for having me on.
Donna Jodhan, LLB, ACSP, MBA: Di I’ll never forget the first day when we met in Ottawa when John Rafferty, the past CEO, invited us to be at a I think it was a meet the parliamentarians thing in Ottawa. We’re meeting behind the speaker’s chair, and there you are with your very pretty dog. And I’m trying to remember her name.
Diane Bergeron: But that that was Lucy.
Donna Jodhan, LLB, ACSP, MBA: Was that Lucy?
Diane Bergeron: That was Lucy.
Donna Jodhan, LLB, ACSP, MBA: Oh, I love Lucy. But that was the first day we met. And ever since then we have developed a good, solid friendship. You have been a great supporter to me, especially so when I was president of the Alliance for the Quality of Blind Canadians. We have maintained our friendship. We have served on several committees, advisory committees such as Elections Canada, and we did a panel together at the.
Diane Bergeron: We did.
Donna Jodhan, LLB, ACSP, MBA: Yes we did. So let’s get started.
Diane Bergeron: That’s good.
Donna Jodhan, LLB, ACSP, MBA: So, Siam for listeners meeting you for the first time. How did your early journey with a genetic eye condition ultimately becoming blind by your mid-thirties, and that decades as a guide dog handler shape your leadership style and the values that you carry into advocacy today?
Diane Bergeron: You know, Donna, I have to say, you have always asked the hard questions. You know that, right?
Donna Jodhan, LLB, ACSP, MBA: Oh, darn, I try.
Diane Bergeron: You know, so having RP retinitis pigmentosa, you know, it slowly deteriorated. I was diagnosed when I was five and of course, was sort of became totally blind in my mid 30s, as you said, I’ve been having the gradual deterioration. One of the things that that really stuck to me in my life experiences is that people see the world differently every day. And whether they see the world with their eyes or they experience the world with something else, the way that they experience their environment is different on a regular basis. And sight loss for one person, or blindness for one person, is not the same as blindness for another person. And we can’t make the assumption that just because we’ve accommodated one person with with a visual impairment, it doesn’t mean that we’re accommodating everybody. So that was one of the things that always struck me as I gradually lost my sight, was that people would say, oh, well, I have, you know, when I, when I was reading large print, they say, oh, but we’ve got it here in Braille. And I’m like, perfect. I don’t read Braille. It’s like people think as soon as you’re diagnosed with being, you know, on the path to being blind, that you suddenly know how to read this, these bumps and that it makes perfect sense, you know? Yes. And and so that was one of the things. And that’s something I’ve always taken back to my advocacy work is that one, one solution does not fit all. And in fact, one solution doesn’t even fit one person in different scenarios. So that’s one of the things the guide dog aspect is interesting for me, because I learned a couple of things with guide dogs from an advocacy perspective. You know, I learned that you have to you have to have a thick skin and always be prepared.
Diane Bergeron: Excuse me, I always have to be prepared, especially if you’re looking for some form of transportation going into certain places that that are, you know, often refuse access to guide dogs or any kind of service animal. I, I, You know, you’ve got to be ready to have a backup plan. You have to be ready to have all your information. You got to know what you’re talking about. You have to be able to spew legislation which the average person doesn’t have to do. Right. Most people don’t go, you know, call a taxi. And when the taxi pulls up, you know, right away they get in and they go. They don’t have to think about, okay, what city I’m in, what is this bylaw and is there, you know, what is the rules and the legislation in this province or you know, it’s it’s mind boggling. How much prepared you have to be just to go out and, and, you know, do these small things. I remember taking a vacation to the UK with my daughter when she was 13. And first we had a problem dealing with getting the dog accepted into the plane and blah, blah, blah. And then I finally took care of that. That took a few months. I finally took care of that. Then I sent an email to the tour bus company and said I was blind and I had a guide dog and they came back with, oh, you know, we can’t accommodate that on our buses right now, blah, blah, blah. And my daughter read the email at 13 and she goes, mom, we’re not even in the country yet and you’re already causing problems.
Donna Jodhan, LLB, ACSP, MBA: Oh, dear.
Diane Bergeron: And I’m like, I just want to go on vacation. This is not rocket science. I just want to go on vacation with my daughter. It was a mother daughter trip. And, you know, it just became an ordeal. So that was one of the things. But when it comes to leadership, the interesting thing I find with Guide Dogs is something that I learned is that a guide dog is guiding or potentially leading, but although they’re in front and they’re saying, go this way, you know, they’re they’re taking you where you need to go. It’s actually the handler that is giving the direction to the dog. And so that has really taught me a lot about leadership in that somebody else might be walking forward, but there’s often somebody behind that person giving them the direction that they need to go. And a leader can be the person that is behind the guide. It is also taught me to say to people, just because just because you’re guiding doesn’t mean you get to decide where we go, right? Like this is a joint thing, right. We work this out together and that’s that’s what I’ve taken into my leadership style. If you talk to any of the people that work with me, I tend to sit down. I go, this is the end destination, people. How are we going to get there? And everybody gets a say as to how to get there or this is, this is what we need to fix in the world. How how are where are we going to go to, you know, to get this fixed. And there could be a myriad of different possibilities, and together we work on what the end destination is going to look like. So I would say that’s from from my guide dog perspective. That’s what I learned the most.
Donna Jodhan, LLB, ACSP, MBA: Wow. Now you’ve held roles with the city of Edmonton, Alberta Premier’s Councils Council on the Status of Persons with disabilities and then National Leadership at Cnib. What through line connects those chapters? And what did each one teach you about moving systems, not just hearts.
Diane Bergeron: So I started at my first municipal government was the City of Edmonton, as you said. I was just coming out of university. I had had worked in rehabilitation, what is now known as disability and Community Studies or Community services with group home situations in the past. Then I had my my sweet girl. And had my daughter and then had to, you know, get back to work. Re-educated by the time I was going back to work. I was a single mom. By then, my husband and I had split up. The group home type work is really shift work, which is not easy at any time. But having, you know, having to deal with childcare, with shift work on top of transportation issues because of, you know, buses not going out at certain times of the night and so on. I felt that I needed to go back to school, so I did I went back and I got management studies and so on, and I ended up getting a job working for the city of Edmonton. And and I actually got that job by accident. If that sounds kind of weird to say that now, but when I got that job I had been doing a little bit of research on on something completely different and came across this job advertisement for the City of Edmonton Advisory Board on Services for persons with disabilities. And I thought, oh, look, I have a disability. Maybe I should apply. And it was about advising City Council on on a from a, from a disability perspective on city bylaws, regulations, standards programs, policies, that type of thing.
Diane Bergeron: And and it was there was a board, an advisory board made up, made up of people with various disabilities. And this job was to go in and and work with that board to provide City of Edmonton advice on, on what they were doing around disability and so on. And I thought, that sounds very interesting. That sounds like it’s, you know, right up my alley. And and so I applied on the job. Seriously, not even thinking I’d get the job. I wasn’t even finished school yet. I still had a few months left, and then imagine my shock when they called and offered me the full time job and I’m like, but I’m not done school. I still have two months to go. And God bless the city. They they adopted my schedule so I could still go to school and finish up, and I and I got the job. And what it really fascinated me was learning the jurisdictional differences between municipal provincial, federal, international, regional, like, there’s all these different kind of jurisdictions, and each different jurisdiction has different boundaries around it. And you know, sort of the, the how hard it was to get legislation through, regardless of what level government you’re at. And but a regulation can get put through faster if you have the legislation to pin it on. And so there was you know, I learned all that stuff in that first few years with the city of Edmonton.
Diane Bergeron: It was a fantastic experience. Variance, but my jurisdiction was the City of Edmonton. And, you know, I really a lot of the stuff that I saw as being key areas of concern for people with disabilities was at a, at a different not I’m not going to say a higher level. I mean, we might want to call it a higher level of government, but a different level and different jurisdictions, you know, education, health care, that kind of stuff that had to be dealt with at the municipal or at the provincial level. So that’s when the job came up at the Premier’s Council. And I thought, well, that’s perfect. It takes the experience and knowledge that I have from the city, but it gives me that different jurisdiction to work on these things that I, I would really like to work on. So I did that for a number of years. And and then it got to the point where I was realizing that sometimes when you work in government, you’re you don’t have the freedom to make a lot of the decisions that you want to make, because those decisions have to be made by either the higher bureaucracy or by the political realm. And you can’t you’re not an advocate at that point. You’re an advisor, and you are giving that advice to those individuals, and they can take it or leave it.
Diane Bergeron: And if they choose to leave it, then you’re not. That’s the decision. And now you you implement their decision. And I was getting frustrated with implementing what I felt was not the right decision. And Cnib John Rafferty, as you mentioned before, called me up and said you know, we had met for coffee at one point and he said, I got a job you might be interested in. And suddenly I went, oh, I get to go and be at my the job they were offering me was national director of government relations and advocacy. And I’m like, oh, now I get to go not just deal with different levels of government, including, you know, the municipal, the provincial, the federal. There was some international. But I get to do it from the other side of the table. So now I get to show up at the table and I don’t have to care about what the you know, what all of these other people think. I can show up and advocate and really, you know, speak my voice. And and when the answer comes back, no, I can go back and say, that’s the wrong answer. Let’s try again. Yeah. Which I couldn’t do in government. So there was definitely that, that, that through piece of it was learning from the inside and then coming outside and going back and saying, now I know how everything works. Let me tell you what you’re doing wrong.
Diane Bergeron: And I’m very good at telling people what they’re doing wrong. My husband will tell you that for a fact.
Donna Jodhan, LLB, ACSP, MBA: You never told me that, though.
Diane Bergeron: No, I haven’t had to do that yet.
Donna Jodhan, LLB, ACSP, MBA: Not yet. Oh, boy. So today you serve as Caleb’s head of international partnerships. From my seat, as a fellow advocate, I’m curious, what does international partnerships actually look like day to day, and how do you decide which collaborations will deliver the greatest impact for blind communities?
Diane Bergeron: So the the department, international partnerships department, you know, I’ve been I’ve been connected to international since I started with Cnib through the World Blind Union and through some other international collaborations. But We decided it was always off the side of my desk. It was always kind of a piece of the other work that I was doing. And then in December Angela Bonfante had become the president CEO of Cnib, and she asked me to step away. At that time, I was running the guide dog program, and she asked me to step away from guide dogs and create this new international partnerships department and the whole purpose of the department, she said, I want you to develop a strategy and the whole thing. So we kind of came down to when we were looking at what needs to be done from an international perspective. We came down to three key areas. One is what is being done around the world, in other organizations or in other countries that we can bring back to Canada and help benefit Canadians who are blind or partially sighted or deafblind. So that could be a program that somebody is doing in another country, at country, at another blindness organization that we. Why? Why should we reinvent the wheel if they’re doing a great job at it? Let’s talk to them and see if we can use their you know, their, their template and bring that forward and then tweak it for the Canadian you know, the Canadian context. And the other piece of that is what do we have in, in Canada that other countries don’t have in, you know, so if you think about employment, for example, you know, we have our Come to Work program.
Diane Bergeron: There’s organizations in other countries that are looking at their own employment programs. And so they’re like, well, that sounds like that’s doing quite well. And we just yeah, here’s here’s the the structure, the strategy, here’s how to set it up. And, and you know, there’s not this proprietary perspective. We’re just sharing information and literally handing over the keys to our program. And then other organizations take that and, and create you know, create their own added to that piece. And this is all the first one, which is all like working on this, how to build these programs is sometimes we’ll work with more than, you know, one or 2 or 3 organizations where we come together and say, what’s really needed is this, but it doesn’t exist. So let’s the two or 3 or 4 of our organizations sit down and figure out together, based on all the history and information that we have as a collective, how to create that one program or one thing to, to make lives better in all of our countries. So that’s sort of that partnership piece there. The second big component is standards international standards and national standards. So many times Canada creates their own standards. And then sometimes they get shared internationally, sometimes they don’t. So part of my job was to look at what are we doing. Well. And when it comes to standards and and Canada, the other part is, is sometimes there’s international standards that are out there that Canada is not adopting.
Diane Bergeron: So making sure that the standards go in both directions. So that was another piece. And the last piece is social corporate responsibility looking what’s happening in the global South and looking at developing countries. And how can we as an organization and as a country who has knowledge and resources, how can we assist in helping to build capacity in those other in those other countries? So that was created, you know, that was the purpose of the department which says a whole lot about what we want to do. But day to day, I could be talking about the Marrakesh treaty on Monday morning with an on a zoom call. And Monday afternoon I’m off to meet with a member of Parliament to talk about a youth internship and international youth internship program. And then I might have to get up in the middle of the night to participate in a zoom call with somebody and I don’t know, India about employment programs and how we might be able to help them with theirs. So it just it it’s not a 9 to 5 job. It’s not a, it’s not a sit behind your desk. Sometimes you need to travel and and a lot of people think traveling internationally is this really exciting thing. And it is for about the first six months. And then it’s exhausting because you get on a plane and you land and you change in the airport and you go to meetings, and then you get back on a plane and you come home.
Diane Bergeron: So, you know, depending on where you’re going and what you’re doing, sometimes you’re there for a few days, but you really get to see the airport and the hotel and then the airport again. So it’s it’s it sounds jet setting sounds very glamorous, but it it isn’t always sometimes it’s fun and you get to do a little side trip or something, but definitely it’s it’s a lot of time zone changes. It’s strategic travel because you only want to use money to travel when you know that you’re going to be able to strategically do some good. And then and it’s really looking at what, what is our like giving the goals and the information I’ve given you on what our department does. Then it’s matching that to what other people are doing. So I’m not going to partner with somebody with with an organization that does not that does not align with the, you know, the values and, and, and direction of what we are doing. So it all depends on, on what they’re doing. But it typically that’s where I go back to my, my plan. And I go, does it fit in with this plan. And if it does is it meeting the the values of the organization. And quite honestly, it honestly Donna, there’s a lot of it that is intuition where you sit back and go, you know, we haven’t talked about this at Cnib, but this is a really innovative thing and I think it could benefit some people. And then I just go and find the people and get backing. So yeah.
Donna Jodhan, LLB, ACSP, MBA: I remember a funny story you told me once, I think it was Lucy who used to take the socks out of your suitcase.
Diane Bergeron: Yes.
Donna Jodhan, LLB, ACSP, MBA: I remember that.
Diane Bergeron: When I was packing.
Donna Jodhan, LLB, ACSP, MBA: Yes.
Diane Bergeron: Yeah, she’s. She used to take my socks out. Well, anything she could get her mouth on, actually any kind of garment that she could. If if she could get her mouth on it, she would unpack what I was packing and often replace it with dog toys. So if the dog toys were in there, like that was kind of the thing I had to make sure was there. It was almost like she was saying, if there’s no dog toys, it means you’re traveling without me and you’re not allowed to go. And if you’re traveling with me, there better be dog toys in there to keep me occupied.
Donna Jodhan, LLB, ACSP, MBA: What a dog.
Diane Bergeron: Yeah, yeah, she was a character, that’s for sure.
Donna Jodhan, LLB, ACSP, MBA: Oh, gosh. Now, I believe that you were at one time a table officer at the World Blind Union, plus the treasurer, plus chairing the women’s committee and the finance committee. How do those roles give you a global dashboard on what’s working and what’s failing for blind people across regions.
Diane Bergeron: Yeah. So the world blind union, just for anybody who doesn’t know, the World Blind Union is a coalition of sorts of organizations around the world, oven for Blind People. And it’s separated into six regions North America, Caribbean, Europe, Asia Pacific, Asia, Africa and Latin America. And so and each of those regions have a set of officers. And so the president of each of those regions makes up the table and makes up the officers. And the table officers are a global it’s a global position. So it’s the president, past president, president, first and second vice presidents, treasurer and secretary general. The table officer position is a global position. Once you become a table officer, you no longer represent your country or your region.
Donna Jodhan, LLB, ACSP, MBA: Oh, okay.
Diane Bergeron: So when you sit at that table, you can’t think about what’s right for Canada. You have to think about or not even what’s right. You know what’s right for North America, Caribbean region. You have to think about the global perspective. So you get to sit amongst representatives, representatives from every region, and they bring to the table some of their concerns and so on. And as treasurer. First and foremost, you know, I dealt with looking at the finances, the finances of the of the organization, but that meant that I also had to work with the secretary general to look at the finances of all the different members that were looking for sponsorships. You’ve got a good understanding of sort of where the various countries were at when it came to their global positioning, financial positioning. But and it was often fascinating to me that you could have a country that would be a mid to high level financial country. But the organization serving people who are blind or partially sighted would actually be looking for a subsidy because they get absolutely zero assistance from from government. And the, you know, a lot of a good example of that would be some of the countries in the Caribbean, you know, they’ve got high income or mid to high income country because their their basis is tourism. But none of that tourism, none of those tourism dollars trickles down to the organization serving people who are blind or partially sighted or who are of people who are blind or partially sighted. So it gave you an understanding of some of the financial situations. I was also before I became chair of the Women’s Committee.
Diane Bergeron: For many years I was chair of the Youth Youth Engagement Leadership Committee, and that also gave me some great perspectives on what are the newer things coming. You know, what are younger people thinking coming from the different regions because there was representation from each different region. And often, of course, those committee members were also girls or women. And so it crossed over with the women’s the Women’s Committee which of course, then also gave me that perspective of the difference of being a woman in Canada as opposed to a woman in a rural area of a developing country. And and it’s, it’s it was always fascinating to me that, you know, we as women in Canada, we have. We still face the glass ceiling. Not as much as we used to, but it’s still there. We still face equality issues, but when you compare that to the situation for women in you know, countries where they are suppressed and they are not treated equally, it’s very difficult to to to get your, your head around it. And so I became quite fascinated about looking at how do we how do we try to fight against suppression of women and, and violence against women in certain areas and regions of the world. And how do we work with UN treaties and other and various organizations to try and combat this? So it was it was it’s always been a fascination of mine around women. But then this particular Her role gave me an opportunity to see those differences up close and personal.
Donna Jodhan, LLB, ACSP, MBA: You’ve had a priceless education that many would envy. I’m telling you, priceless.
Diane Bergeron: Yeah. It’s been it’s been a it’s been a fascinating experience, that’s for sure.
Donna Jodhan, LLB, ACSP, MBA: You can write a book.
Diane Bergeron: That’ll be my next one, right?
Donna Jodhan, LLB, ACSP, MBA: Yes. Now, you and I both care deeply about accessible voting and the right to a truly secret ballot from your work. Engaging, engaging Elections Canada and Parliament. What are the most practical next steps Canada should take to pilot and scale accessible electronic voting securely?
Diane Bergeron: So number one. We got to get rid of this paper ballot.
Donna Jodhan, LLB, ACSP, MBA: Yes, yes.
Diane Bergeron: That’s just number one, right? It can’t be that the paper ballot works for all these people. And part of the problem is, is that we’re looking at this from an accommodation perspective. Right. My viewpoint is, is that the paper ballot is actually an accommodation for sighted people. It is useless to the rest of us. And if all the ballots were Braille, it would be useless to the sighted people. So regardless of how it is, it’s an accommodation for somebody. And in that case, it’s an accommodation for people who can see or as I tend to call them, the retinol dependents of the world. And so we keep thinking about it as though we have to create this different system for people who have who are blind or partially sighted or deaf. And my statement to and I’ve said this and you heard me say this so many times.
Donna Jodhan, LLB, ACSP, MBA: With.
Diane Bergeron: Elections Canada is, you know, we need to stop with the paper ballot. We need to come up with a secure system that can accommodate everybody at the polling stations. And it needs to be done so that I can walk into. And you can walk into a polling station and vote like everybody else without having to get assistance. We can check that we voted properly. There’s so many ways we can do this. We can do it in secret. For those of us who who are you know, who can use audio, we can we can plug in a headphone and listen to it. For those people who need Braille, they can plug in a Braille display. There’s all sorts of ways that we can make this accessible. But the first and foremost thing is the legislation that regulates the ballot needs to provide opportunities that the the government, from a political standpoint, need to give Elections Canada the freedom to make it happen. But they’re so afraid of it for some reason.
Donna Jodhan, LLB, ACSP, MBA: I wonder why.
Diane Bergeron: You know, they’re just terrified of giving this. All the things can be tampered with and everything else. Well, yeah, they can, but at the same time, paper can be tampered with, too. So, you know, we need to create the system from the ground up, and you can you can do that. You can do that without changing the legislation just to try it out and create the system. The problem is they’re trying to fit a square peg into a round hole. They’re trying to create something that works with the paper ballot and that works with the legislation. My argument is they should forget about the legislation off to the side, come up with the system, fix the problem, and then change the legislation. And the solution is there. That’s what I think they need to do.
Donna Jodhan, LLB, ACSP, MBA: What do you say to skeptics who argue that assistive help at the polling station is good enough. How do you explain, succinctly but persuasively, why privacy and independence at the ballot box or civil rights are not conveniences.
Diane Bergeron: So when I have when I, when I’m voting and I need to use somebody, they I always tell them that this is not this is not good enough. This is absolutely not good enough. How do I know that person’s going to mark the ballot the way I want them to mark it? How do I know that if they did that, that they would keep my decisions secret? How do I check to make sure that they didn’t accidentally spoil my ballot? There’s no way for me to confirm any of that. And their answer to me is always that person takes an oath to to keep it secret, to market the way you know that you want them to. And I always remind them that my ex-husband also took an oath at one time. And with the divorce rate in this country, that should tell people how much they should trust this stranger that they don’t know to take an oath. It is unacceptable. It is. It is. It is not, in my opinion, based on a human rights perspective. Every Canadian, according to my what I’ve always learned in this country is every Canadian has the has the right to vote independently and in secret. Unless of course, you’re blind. Then apparently that doesn’t matter, because we get this person that we don’t even know and we’re supposed to trust them. So if I can’t trust the person I’m marrying, I certainly cannot trust this perfect stranger.
Donna Jodhan, LLB, ACSP, MBA: I love that analogy, but it’s true. I mean, you know, somehow they don’t understand that in the case of a blind or sight impaired person, privacy is so important. What do we do? What do we do to convince them? How can we?
Diane Bergeron: I don’t know, Donna. You and I have been at it for what now? Like 15 years? Yeah.
Donna Jodhan, LLB, ACSP, MBA: Yeah, yeah.
Diane Bergeron: I would like to say, though, I do think that Elections Canada does try. I think that they do. They do a lot of innovative things. And they keep trying to, to fit that square peg in. But until the government says go off to the side, figure this out and come back to us with this perfect system, and then we’ll change the legislation. It’s not I don’t think it’s going to go anywhere.
Donna Jodhan, LLB, ACSP, MBA: I agree. Now, you let Cnib guide dogs and now help drive its growth for business owners, transit agencies These and hospitality listener leaders listening. What are the top access mistakes you still see with working teams? And what’s the quick start playbook to fix them?
Diane Bergeron: Wow. You know, there’s this assumption that a dog is a dog is a dog, and that’s not true. I think that it’s important for, for any customer facing business to understand that the dogs that that are chosen to be guide dogs are they’re not just chosen. We don’t go. You know, we don’t go down to the pound and pick a dog and go, okay, we’re going to slap a harness on it and go somewhere. These dogs are bred specifically using genetic information to get the best possible outcomes. We look at behavior. We look at health, we look at temperament, we look at trainability. There’s so many things that we think about. And I’ve learned so much around canine genetics. I did not know that a dog’s comfort level walking up and down stairs is actually actually baked into their DNA. So if we if we have dogs that are not comfortable on stairs, you often see it in in the majority of the litter. And so we won’t use any of those dogs when it comes to looking at breeding and so on, because we want to make sure that that’s not there. So, you know, you have to make sure that that dog is the creme de la creme of dogs and the trainability and and so on and so forth. So these dogs are, are the, the perfection of these dogs, if you want to call it that starts before they’re even conceived. Because we look at the, we look at these dogs from five generations back to see the history we look at, like there is a world registry of information about genetics on service dogs.
Diane Bergeron: And so there’s all sorts of information. And then you and then you have geneticists that are working on, you know, you have a dog, you want a dog that has confidence and, and and has drive, but you want them to be quiet and, and at the same time. And so if you have a dog, that’s for example, you have a dog that’s got a little bit too much energy. You probably want to breed that dog to a dog that’s, you know, fairly lazy and doesn’t want to move that much. And hopefully the puppies in between will come out with that, that middle ground. So there’s a lot of genetics and research. And I would say science that goes into that, you know, those puppies. And then right from day one. Those dogs are they’re interacted with in very specific ways and monitored and tested for their right up, like, before they even leave their mom at eight weeks old. There’s lots of checks to see how that dog is interacting and and what it’s doing. And then they go off with the puppy raisers who are very specifically working with those dogs. So this is a big cycle of getting that dog prepared. And in the long run, the dog comes back from their puppy raiser, goes through training, and eventually is matched very specifically with the handler.
Diane Bergeron: It’s not just any dog for any handler, it’s a specific dog for a specific handler so that the match, you know, the team can be successful. And even at that point, the success rate of the dogs going through the program is only 40%. So that person and that dog walking into their business and to their taxi service or whatever, rideshare or, you know, restaurant, whatever it is, they’re walking in with a dog that has made it to the top. We didn’t just send them the dog with an instruction manual and said, here’s how you work your dog. There is training with that. Each specific dog and that person puts in a lot of work into that dog. So that dog is coming into your business. There’s been a massive investment into that dog and the handler. So the dog coming in is probably better behaved than the majority of the humans coming into your business, because I don’t know any human that goes in there that before they were even conceived, their parents sat down and said, let’s look at five generations back to see what kind of match we’re going to have. You know, this is something that is very scientific. And so, so I, I really think that what the business owners need to know is the dog that’s coming in is specialized in doing a job. It’s creating independence and freedom for that individual so that they can have the life they choose, that they want to have and do what they want to do.
Diane Bergeron: And by refusing the dog and this is people say this to me, I’m not refusing. I’m not refusing you. I’m refusing your dog. And I’ve often said my dog did not call for a taxi. She’s not allowed to use the phone. So it’s me if you refuse the dog, you’re refusing me. We are a unit. This is a human rights issue. And so understanding that that dog and that person is connected. You can’t say I’m refusing the dog because refusing the dog is refusing me service. And that is discrimination, plain and simple. So I think people need to train their staff to understand that that person has the right to be accompanied by their dog. I also think they need to understand that they have rights. The handler of the dog needs to keep that dog under control and behaving appropriately. And they do have the right if the dog is acting inappropriately. And I mean, if the dog’s, you know, stealing the stake off the neighbor’s table. They do have the right to ask the person to take their dog and leave, because if I stole the stake off the neighbor’s table, they would ask me to leave. So, you know, they do have rights themselves. But just for being. Just for for being accompanied by a guide dog. It’s against the law. And I recommend you don’t do it.
Donna Jodhan, LLB, ACSP, MBA: I guess I just learned something very interesting about, you know, how guide dogs are developed, and they were all about their genetics and, you know, wow, I didn’t know this before now.
Diane Bergeron: Oh, yeah. It’s this is this is it’s a big process. And I think people think we just, you know, the dog falls out of the sky with a harness on and we grab it and walk away and hope for the best. This is huge. It’s a huge process.
Donna Jodhan, LLB, ACSP, MBA: I see the clock is starting to wind down, but I wanted to ask you this question. Many countries are facing guide dog shortages, and Cnib launched a puppy development center in Ontario and forged cross-border partnerships with the US schools. What did it take to stand that up and what matrix? Wait times, graduation rates, you know, retention tell you that the system is improving.
Diane Bergeron: Well, you know, I would say that first of all, you have to have partnerships in this in this space a breeding program is like a colony. And if you stick with your own colony, eventually you’ll end up with too much of the inbreeding you’ll end up with. You know, there’s any geneticists who are listening. You know, you’ve got the inbreeding, the cross breeding, the outbreeding, the the overbreeding. Yeah. And you want to make sure that you have diversity within your colony. A to make sure that you’re bringing in different genetics and you’re not getting too much into inbreeding, but also so that you can end up bringing in different personalities and different skill sets. Right? Because if you think about people if you think about the needs of people for that need a guide dog and you put it on sort of a bell curve or an, you know, an arc, you’ve got the people at the top of that bell curve which, you know, the dogs are they, they find the door, they find the curb, they find the elevator. They do all the things the guide dogs are supposed to do. And they’re, you know, they’re what I call the the average, the average guide dog, the guide dog that does all the things that guide dogs do. And then there’s the other end of the scale where that person just gets up and basically goes for a walk around the neighborhood and comes back, and all they need is a dog that goes around the neighborhood safely.
Diane Bergeron: Yeah. Right. Yeah. And that’s not meaning to say that that’s not a good life. Quite frankly. I’d like that life right now, but but but you don’t need a high energy dog with a massive amount of confidence that can get on planes and trains and automobiles and and everything else. And it can handle crowds and loud noises and sirens and, you know, so that’s the other end of the scale. So you need dogs from one end of that arch to the other end of that arch. And, and you want to make sure that you if you don’t have all of that within your colony, you have to work with other other organizations to get that those genetics and that into your into your colony. The way to do that is to work with, in partnership with other guide dog programs and say, hey, we’ve got this great we’ve got this great lab. We think that this is the, you know, she’s beautiful, she’s got all the great things, but but we don’t have a good partner for her. They have a good partner. So then we we work together and we create. And then both of those dogs end up adding to the breeding of both of our colonies. So you have to have the partnerships in the breeding. During Covid especially we struggled the, the issue is that there’s more people that want dogs than there is dogs.
Donna Jodhan, LLB, ACSP, MBA: Dogs.
Diane Bergeron: Yeah. And, and trainers to go around. There is a shortage of guide dogs, mobility instructors and guide dog trainers. And even if you’ve got all the trainers that you want, if we don’t have enough volunteer puppy raisers to raise those puppies, I can’t, I can’t breathe and have, you know, 500 puppies. If I only have 100 puppy raisers, what do I do with all those dogs? You know, so you have to. It’s like the cycle has to be perfectly matched right from the beginning to the end. The end, which is the handler. And of course, it actually is more like a circle, because eventually that handler is going to need another dog. And so they have to do the full circle right back to the beginning. So it’s it’s a very tight knit circle. And if you don’t have partners within that system to help you when you have a shortage and they have a, you know, some schools, they, they had the problem, they had too many puppies during Covid.
Donna Jodhan, LLB, ACSP, MBA: Okay.
Diane Bergeron: And they weren’t running classes because of Covid. We needed puppies like we needed dogs. So they gave us their dogs and then we gave them back dogs and we like. That’s what partners do. You know and it really worked very well. We’ve got partnerships all around the world now that we work with.
Donna Jodhan, LLB, ACSP, MBA: O di. We’re almost at the end of our session here. But based on your wealth of experience, your wealth of knowledge, your education and everything, I sure admire what you’ve done. What words of wisdom would you have for future advocates?
Diane Bergeron: You know, I think I would love to say that the time will come where advocacy is not needed anymore, that the world is just built for everybody. And things are just, you know, part of life. I don’t think I’m going to be alive if that ever happens. I think that it’s going to take much longer than the rest of my lifetime. And I’m not sure we’ll ever get there. Advocacy for me is, I would say you when you’re advocating there’s different ways to do it. You can advocate from within and become a part of the system. You can’t beat them. Join them. Type perspective, help to build, help to create. Sometimes you have to go from without and really push and and become more forceful. Sometimes you have to legislate, sometimes you have to get the media involved. Sometimes you have to beg, plead and grovel. And sometimes you have to, you know, become friends with somebody so that they can understand. But ultimately, advocacy is knowing your audience and understanding that you need to change your strategy based on the audience that you are trying. Because really, the problem with the world isn’t the electoral system or the you know, the lack of Braille places or the policy that isn’t working properly. The problem is the attitudes against and the stigma that is held against people who are blind or partially sighted and deafblind. And that’s what we need to change. You’re not going to change any of the systems until you change the attitudes. And that’s got to be the number one piece of the puzzle for advocates. Know your audience and know that it’s their attitudes you have to change. So you have to you have to get them to change their mind, preferably in a nice, friendly way. But sometimes it has to. You have to change their mind through legislation, but that’s what you’re trying to do, ultimately.
Donna Jodhan, LLB, ACSP, MBA: Diane Bergeron has been a pleasure. Absolute pleasure listening to you. I’ve learned so much.
Diane Bergeron: Well, thank you for having me on, Donna. We’ve been we’ve been friends for a long time, and I very much appreciate the invite.
Donna Jodhan, LLB, ACSP, MBA: And if ever you wanted to come back, please do. Thank you again. It’s been a pleasure. I hope we sometime we will be able to meet up and have a glass of wine and take it from there.
Diane Bergeron: I was up for a glass of wine. Donna, you know that.
Donna Jodhan, LLB, ACSP, MBA: I know that, I know that. So take care. Hi to your hubby.
Diane Bergeron: Thank you.
Donna Jodhan, LLB, ACSP, MBA: And we will talk to you soon.
Diane Bergeron: Sounds good. Take care.
Donna Jodhan, LLB, ACSP, MBA: Bye bye.
Diane Bergeron: Bye bye.
Donna Jodhan, LLB, ACSP, MBA: Bye bye.
Podcast Commentator: Donna wants to hear from you and invites you to write to her at donnajodhan@gmail.com. Until next time.
Donna J. Jodhan, LLB, ACSP, MBA
Global Leader In Disability Rights, Digital Accessibility, And Inclusive Policy Reform
Turning policy into progress for people with disabilities.
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Remarkable World Commentary Episode #56: Interview with Diane Bergeron, Vice President, Engagement and International Affairs, CNIB
🎙️ Listen to this Podcast.
In this insightful episode of Remarkable World Commentary, Donna J. Jodhan sits down with global advocate Diane Bergeron to trace a life shaped by retinitis pigmentosa, guide dogs, and a tireless commitment to system change. Diane explains how losing vision by her mid thirties taught her that no one accommodation fits everyone, and how working with guide dogs sharpened a leadership style that sets the destination while inviting the team to chart the route. She connects early municipal work in Edmonton to provincial advising and national advocacy, then to a global dashboard through the World Blind Union, where she confronted stark regional contrasts in funding, women’s equity, and youth leadership. Listeners also meet Lucy, the sock-stealing guide dog who turned packing into a comic ritual, and the story becomes a doorway into Diane’s larger message about preparation, resilience, and grace under pressure.
Now leading international partnerships, Diane outlines three priorities: sharing effective programs across borders, aligning standards, and building capacity in the Global South. She and Donna press hard on accessible voting, arguing that Canada must move past paper and pilot secure, verifiable options that deliver privacy and independence for all voters. Diane demystifies guide dog programs for businesses and transit providers, from genetics and training to the ethics of access, reminding leaders that refusing the dog is refusing the person. She closes with counsel for future advocates: know your audience, change attitudes first, and be ready to use every tool available, from quiet collaboration to legislation, until equal access is real.
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 Jodhan, LLB, ACSP, MBA: Hello everybody, 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 websites 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 churn equal access into federal law and most recently on June 3rd, 2022. I was extremely 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’ll 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 A 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. Diane Bergeron or Diane Bergeron, AKA Di. Welcome to my My Remarkable World commentary podcast.
Diane Bergeron: Hello, Donna. Thanks for having me on.
Donna Jodhan, LLB, ACSP, MBA: Di I’ll never forget the first day when we met in Ottawa when John Rafferty, the past CEO, invited us to be at a I think it was a meet the parliamentarians thing in Ottawa. We’re meeting behind the speaker’s chair, and there you are with your very pretty dog. And I’m trying to remember her name.
Diane Bergeron: But that that was Lucy.
Donna Jodhan, LLB, ACSP, MBA: Was that Lucy?
Diane Bergeron: That was Lucy.
Donna Jodhan, LLB, ACSP, MBA: Oh, I love Lucy. But that was the first day we met. And ever since then we have developed a good, solid friendship. You have been a great supporter to me, especially so when I was president of the Alliance for the Quality of Blind Canadians. We have maintained our friendship. We have served on several committees, advisory committees such as Elections Canada, and we did a panel together at the.
Diane Bergeron: We did.
Donna Jodhan, LLB, ACSP, MBA: Yes we did. So let’s get started.
Diane Bergeron: That’s good.
Donna Jodhan, LLB, ACSP, MBA: So, Siam for listeners meeting you for the first time. How did your early journey with a genetic eye condition ultimately becoming blind by your mid-thirties, and that decades as a guide dog handler shape your leadership style and the values that you carry into advocacy today?
Diane Bergeron: You know, Donna, I have to say, you have always asked the hard questions. You know that, right?
Donna Jodhan, LLB, ACSP, MBA: Oh, darn, I try.
Diane Bergeron: You know, so having RP retinitis pigmentosa, you know, it slowly deteriorated. I was diagnosed when I was five and of course, was sort of became totally blind in my mid 30s, as you said, I’ve been having the gradual deterioration. One of the things that that really stuck to me in my life experiences is that people see the world differently every day. And whether they see the world with their eyes or they experience the world with something else, the way that they experience their environment is different on a regular basis. And sight loss for one person, or blindness for one person, is not the same as blindness for another person. And we can’t make the assumption that just because we’ve accommodated one person with with a visual impairment, it doesn’t mean that we’re accommodating everybody. So that was one of the things that always struck me as I gradually lost my sight, was that people would say, oh, well, I have, you know, when I, when I was reading large print, they say, oh, but we’ve got it here in Braille. And I’m like, perfect. I don’t read Braille. It’s like people think as soon as you’re diagnosed with being, you know, on the path to being blind, that you suddenly know how to read this, these bumps and that it makes perfect sense, you know? Yes. And and so that was one of the things. And that’s something I’ve always taken back to my advocacy work is that one, one solution does not fit all. And in fact, one solution doesn’t even fit one person in different scenarios. So that’s one of the things the guide dog aspect is interesting for me, because I learned a couple of things with guide dogs from an advocacy perspective. You know, I learned that you have to you have to have a thick skin and always be prepared.
Diane Bergeron: Excuse me, I always have to be prepared, especially if you’re looking for some form of transportation going into certain places that that are, you know, often refuse access to guide dogs or any kind of service animal. I, I, You know, you’ve got to be ready to have a backup plan. You have to be ready to have all your information. You got to know what you’re talking about. You have to be able to spew legislation which the average person doesn’t have to do. Right. Most people don’t go, you know, call a taxi. And when the taxi pulls up, you know, right away they get in and they go. They don’t have to think about, okay, what city I’m in, what is this bylaw and is there, you know, what is the rules and the legislation in this province or you know, it’s it’s mind boggling. How much prepared you have to be just to go out and, and, you know, do these small things. I remember taking a vacation to the UK with my daughter when she was 13. And first we had a problem dealing with getting the dog accepted into the plane and blah, blah, blah. And then I finally took care of that. That took a few months. I finally took care of that. Then I sent an email to the tour bus company and said I was blind and I had a guide dog and they came back with, oh, you know, we can’t accommodate that on our buses right now, blah, blah, blah. And my daughter read the email at 13 and she goes, mom, we’re not even in the country yet and you’re already causing problems.
Donna Jodhan, LLB, ACSP, MBA: Oh, dear.
Diane Bergeron: And I’m like, I just want to go on vacation. This is not rocket science. I just want to go on vacation with my daughter. It was a mother daughter trip. And, you know, it just became an ordeal. So that was one of the things. But when it comes to leadership, the interesting thing I find with Guide Dogs is something that I learned is that a guide dog is guiding or potentially leading, but although they’re in front and they’re saying, go this way, you know, they’re they’re taking you where you need to go. It’s actually the handler that is giving the direction to the dog. And so that has really taught me a lot about leadership in that somebody else might be walking forward, but there’s often somebody behind that person giving them the direction that they need to go. And a leader can be the person that is behind the guide. It is also taught me to say to people, just because just because you’re guiding doesn’t mean you get to decide where we go, right? Like this is a joint thing, right. We work this out together and that’s that’s what I’ve taken into my leadership style. If you talk to any of the people that work with me, I tend to sit down. I go, this is the end destination, people. How are we going to get there? And everybody gets a say as to how to get there or this is, this is what we need to fix in the world. How how are where are we going to go to, you know, to get this fixed. And there could be a myriad of different possibilities, and together we work on what the end destination is going to look like. So I would say that’s from from my guide dog perspective. That’s what I learned the most.
Donna Jodhan, LLB, ACSP, MBA: Wow. Now you’ve held roles with the city of Edmonton, Alberta Premier’s Councils Council on the Status of Persons with disabilities and then National Leadership at Cnib. What through line connects those chapters? And what did each one teach you about moving systems, not just hearts.
Diane Bergeron: So I started at my first municipal government was the City of Edmonton, as you said. I was just coming out of university. I had had worked in rehabilitation, what is now known as disability and Community Studies or Community services with group home situations in the past. Then I had my my sweet girl. And had my daughter and then had to, you know, get back to work. Re-educated by the time I was going back to work. I was a single mom. By then, my husband and I had split up. The group home type work is really shift work, which is not easy at any time. But having, you know, having to deal with childcare, with shift work on top of transportation issues because of, you know, buses not going out at certain times of the night and so on. I felt that I needed to go back to school, so I did I went back and I got management studies and so on, and I ended up getting a job working for the city of Edmonton. And and I actually got that job by accident. If that sounds kind of weird to say that now, but when I got that job I had been doing a little bit of research on on something completely different and came across this job advertisement for the City of Edmonton Advisory Board on Services for persons with disabilities. And I thought, oh, look, I have a disability. Maybe I should apply. And it was about advising City Council on on a from a, from a disability perspective on city bylaws, regulations, standards programs, policies, that type of thing.
Diane Bergeron: And and it was there was a board, an advisory board made up, made up of people with various disabilities. And this job was to go in and and work with that board to provide City of Edmonton advice on, on what they were doing around disability and so on. And I thought, that sounds very interesting. That sounds like it’s, you know, right up my alley. And and so I applied on the job. Seriously, not even thinking I’d get the job. I wasn’t even finished school yet. I still had a few months left, and then imagine my shock when they called and offered me the full time job and I’m like, but I’m not done school. I still have two months to go. And God bless the city. They they adopted my schedule so I could still go to school and finish up, and I and I got the job. And what it really fascinated me was learning the jurisdictional differences between municipal provincial, federal, international, regional, like, there’s all these different kind of jurisdictions, and each different jurisdiction has different boundaries around it. And you know, sort of the, the how hard it was to get legislation through, regardless of what level government you’re at. And but a regulation can get put through faster if you have the legislation to pin it on. And so there was you know, I learned all that stuff in that first few years with the city of Edmonton.
Diane Bergeron: It was a fantastic experience. Variance, but my jurisdiction was the City of Edmonton. And, you know, I really a lot of the stuff that I saw as being key areas of concern for people with disabilities was at a, at a different not I’m not going to say a higher level. I mean, we might want to call it a higher level of government, but a different level and different jurisdictions, you know, education, health care, that kind of stuff that had to be dealt with at the municipal or at the provincial level. So that’s when the job came up at the Premier’s Council. And I thought, well, that’s perfect. It takes the experience and knowledge that I have from the city, but it gives me that different jurisdiction to work on these things that I, I would really like to work on. So I did that for a number of years. And and then it got to the point where I was realizing that sometimes when you work in government, you’re you don’t have the freedom to make a lot of the decisions that you want to make, because those decisions have to be made by either the higher bureaucracy or by the political realm. And you can’t you’re not an advocate at that point. You’re an advisor, and you are giving that advice to those individuals, and they can take it or leave it.
Diane Bergeron: And if they choose to leave it, then you’re not. That’s the decision. And now you you implement their decision. And I was getting frustrated with implementing what I felt was not the right decision. And Cnib John Rafferty, as you mentioned before, called me up and said you know, we had met for coffee at one point and he said, I got a job you might be interested in. And suddenly I went, oh, I get to go and be at my the job they were offering me was national director of government relations and advocacy. And I’m like, oh, now I get to go not just deal with different levels of government, including, you know, the municipal, the provincial, the federal. There was some international. But I get to do it from the other side of the table. So now I get to show up at the table and I don’t have to care about what the you know, what all of these other people think. I can show up and advocate and really, you know, speak my voice. And and when the answer comes back, no, I can go back and say, that’s the wrong answer. Let’s try again. Yeah. Which I couldn’t do in government. So there was definitely that, that, that through piece of it was learning from the inside and then coming outside and going back and saying, now I know how everything works. Let me tell you what you’re doing wrong.
Diane Bergeron: And I’m very good at telling people what they’re doing wrong. My husband will tell you that for a fact.
Donna Jodhan, LLB, ACSP, MBA: You never told me that, though.
Diane Bergeron: No, I haven’t had to do that yet.
Donna Jodhan, LLB, ACSP, MBA: Not yet. Oh, boy. So today you serve as Caleb’s head of international partnerships. From my seat, as a fellow advocate, I’m curious, what does international partnerships actually look like day to day, and how do you decide which collaborations will deliver the greatest impact for blind communities?
Diane Bergeron: So the the department, international partnerships department, you know, I’ve been I’ve been connected to international since I started with Cnib through the World Blind Union and through some other international collaborations. But We decided it was always off the side of my desk. It was always kind of a piece of the other work that I was doing. And then in December Angela Bonfante had become the president CEO of Cnib, and she asked me to step away. At that time, I was running the guide dog program, and she asked me to step away from guide dogs and create this new international partnerships department and the whole purpose of the department, she said, I want you to develop a strategy and the whole thing. So we kind of came down to when we were looking at what needs to be done from an international perspective. We came down to three key areas. One is what is being done around the world, in other organizations or in other countries that we can bring back to Canada and help benefit Canadians who are blind or partially sighted or deafblind. So that could be a program that somebody is doing in another country, at country, at another blindness organization that we. Why? Why should we reinvent the wheel if they’re doing a great job at it? Let’s talk to them and see if we can use their you know, their, their template and bring that forward and then tweak it for the Canadian you know, the Canadian context. And the other piece of that is what do we have in, in Canada that other countries don’t have in, you know, so if you think about employment, for example, you know, we have our Come to Work program.
Diane Bergeron: There’s organizations in other countries that are looking at their own employment programs. And so they’re like, well, that sounds like that’s doing quite well. And we just yeah, here’s here’s the the structure, the strategy, here’s how to set it up. And, and you know, there’s not this proprietary perspective. We’re just sharing information and literally handing over the keys to our program. And then other organizations take that and, and create you know, create their own added to that piece. And this is all the first one, which is all like working on this, how to build these programs is sometimes we’ll work with more than, you know, one or 2 or 3 organizations where we come together and say, what’s really needed is this, but it doesn’t exist. So let’s the two or 3 or 4 of our organizations sit down and figure out together, based on all the history and information that we have as a collective, how to create that one program or one thing to, to make lives better in all of our countries. So that’s sort of that partnership piece there. The second big component is standards international standards and national standards. So many times Canada creates their own standards. And then sometimes they get shared internationally, sometimes they don’t. So part of my job was to look at what are we doing. Well. And when it comes to standards and and Canada, the other part is, is sometimes there’s international standards that are out there that Canada is not adopting.
Diane Bergeron: So making sure that the standards go in both directions. So that was another piece. And the last piece is social corporate responsibility looking what’s happening in the global South and looking at developing countries. And how can we as an organization and as a country who has knowledge and resources, how can we assist in helping to build capacity in those other in those other countries? So that was created, you know, that was the purpose of the department which says a whole lot about what we want to do. But day to day, I could be talking about the Marrakesh treaty on Monday morning with an on a zoom call. And Monday afternoon I’m off to meet with a member of Parliament to talk about a youth internship and international youth internship program. And then I might have to get up in the middle of the night to participate in a zoom call with somebody and I don’t know, India about employment programs and how we might be able to help them with theirs. So it just it it’s not a 9 to 5 job. It’s not a, it’s not a sit behind your desk. Sometimes you need to travel and and a lot of people think traveling internationally is this really exciting thing. And it is for about the first six months. And then it’s exhausting because you get on a plane and you land and you change in the airport and you go to meetings, and then you get back on a plane and you come home.
Diane Bergeron: So, you know, depending on where you’re going and what you’re doing, sometimes you’re there for a few days, but you really get to see the airport and the hotel and then the airport again. So it’s it’s it sounds jet setting sounds very glamorous, but it it isn’t always sometimes it’s fun and you get to do a little side trip or something, but definitely it’s it’s a lot of time zone changes. It’s strategic travel because you only want to use money to travel when you know that you’re going to be able to strategically do some good. And then and it’s really looking at what, what is our like giving the goals and the information I’ve given you on what our department does. Then it’s matching that to what other people are doing. So I’m not going to partner with somebody with with an organization that does not that does not align with the, you know, the values and, and, and direction of what we are doing. So it all depends on, on what they’re doing. But it typically that’s where I go back to my, my plan. And I go, does it fit in with this plan. And if it does is it meeting the the values of the organization. And quite honestly, it honestly Donna, there’s a lot of it that is intuition where you sit back and go, you know, we haven’t talked about this at Cnib, but this is a really innovative thing and I think it could benefit some people. And then I just go and find the people and get backing. So yeah.
Donna Jodhan, LLB, ACSP, MBA: I remember a funny story you told me once, I think it was Lucy who used to take the socks out of your suitcase.
Diane Bergeron: Yes.
Donna Jodhan, LLB, ACSP, MBA: I remember that.
Diane Bergeron: When I was packing.
Donna Jodhan, LLB, ACSP, MBA: Yes.
Diane Bergeron: Yeah, she’s. She used to take my socks out. Well, anything she could get her mouth on, actually any kind of garment that she could. If if she could get her mouth on it, she would unpack what I was packing and often replace it with dog toys. So if the dog toys were in there, like that was kind of the thing I had to make sure was there. It was almost like she was saying, if there’s no dog toys, it means you’re traveling without me and you’re not allowed to go. And if you’re traveling with me, there better be dog toys in there to keep me occupied.
Donna Jodhan, LLB, ACSP, MBA: What a dog.
Diane Bergeron: Yeah, yeah, she was a character, that’s for sure.
Donna Jodhan, LLB, ACSP, MBA: Oh, gosh. Now, I believe that you were at one time a table officer at the World Blind Union, plus the treasurer, plus chairing the women’s committee and the finance committee. How do those roles give you a global dashboard on what’s working and what’s failing for blind people across regions.
Diane Bergeron: Yeah. So the world blind union, just for anybody who doesn’t know, the World Blind Union is a coalition of sorts of organizations around the world, oven for Blind People. And it’s separated into six regions North America, Caribbean, Europe, Asia Pacific, Asia, Africa and Latin America. And so and each of those regions have a set of officers. And so the president of each of those regions makes up the table and makes up the officers. And the table officers are a global it’s a global position. So it’s the president, past president, president, first and second vice presidents, treasurer and secretary general. The table officer position is a global position. Once you become a table officer, you no longer represent your country or your region.
Donna Jodhan, LLB, ACSP, MBA: Oh, okay.
Diane Bergeron: So when you sit at that table, you can’t think about what’s right for Canada. You have to think about or not even what’s right. You know what’s right for North America, Caribbean region. You have to think about the global perspective. So you get to sit amongst representatives, representatives from every region, and they bring to the table some of their concerns and so on. And as treasurer. First and foremost, you know, I dealt with looking at the finances, the finances of the of the organization, but that meant that I also had to work with the secretary general to look at the finances of all the different members that were looking for sponsorships. You’ve got a good understanding of sort of where the various countries were at when it came to their global positioning, financial positioning. But and it was often fascinating to me that you could have a country that would be a mid to high level financial country. But the organization serving people who are blind or partially sighted would actually be looking for a subsidy because they get absolutely zero assistance from from government. And the, you know, a lot of a good example of that would be some of the countries in the Caribbean, you know, they’ve got high income or mid to high income country because their their basis is tourism. But none of that tourism, none of those tourism dollars trickles down to the organization serving people who are blind or partially sighted or who are of people who are blind or partially sighted. So it gave you an understanding of some of the financial situations. I was also before I became chair of the Women’s Committee.
Diane Bergeron: For many years I was chair of the Youth Youth Engagement Leadership Committee, and that also gave me some great perspectives on what are the newer things coming. You know, what are younger people thinking coming from the different regions because there was representation from each different region. And often, of course, those committee members were also girls or women. And so it crossed over with the women’s the Women’s Committee which of course, then also gave me that perspective of the difference of being a woman in Canada as opposed to a woman in a rural area of a developing country. And and it’s, it’s it was always fascinating to me that, you know, we as women in Canada, we have. We still face the glass ceiling. Not as much as we used to, but it’s still there. We still face equality issues, but when you compare that to the situation for women in you know, countries where they are suppressed and they are not treated equally, it’s very difficult to to to get your, your head around it. And so I became quite fascinated about looking at how do we how do we try to fight against suppression of women and, and violence against women in certain areas and regions of the world. And how do we work with UN treaties and other and various organizations to try and combat this? So it was it was it’s always been a fascination of mine around women. But then this particular Her role gave me an opportunity to see those differences up close and personal.
Donna Jodhan, LLB, ACSP, MBA: You’ve had a priceless education that many would envy. I’m telling you, priceless.
Diane Bergeron: Yeah. It’s been it’s been a it’s been a fascinating experience, that’s for sure.
Donna Jodhan, LLB, ACSP, MBA: You can write a book.
Diane Bergeron: That’ll be my next one, right?
Donna Jodhan, LLB, ACSP, MBA: Yes. Now, you and I both care deeply about accessible voting and the right to a truly secret ballot from your work. Engaging, engaging Elections Canada and Parliament. What are the most practical next steps Canada should take to pilot and scale accessible electronic voting securely?
Diane Bergeron: So number one. We got to get rid of this paper ballot.
Donna Jodhan, LLB, ACSP, MBA: Yes, yes.
Diane Bergeron: That’s just number one, right? It can’t be that the paper ballot works for all these people. And part of the problem is, is that we’re looking at this from an accommodation perspective. Right. My viewpoint is, is that the paper ballot is actually an accommodation for sighted people. It is useless to the rest of us. And if all the ballots were Braille, it would be useless to the sighted people. So regardless of how it is, it’s an accommodation for somebody. And in that case, it’s an accommodation for people who can see or as I tend to call them, the retinol dependents of the world. And so we keep thinking about it as though we have to create this different system for people who have who are blind or partially sighted or deaf. And my statement to and I’ve said this and you heard me say this so many times.
Donna Jodhan, LLB, ACSP, MBA: With.
Diane Bergeron: Elections Canada is, you know, we need to stop with the paper ballot. We need to come up with a secure system that can accommodate everybody at the polling stations. And it needs to be done so that I can walk into. And you can walk into a polling station and vote like everybody else without having to get assistance. We can check that we voted properly. There’s so many ways we can do this. We can do it in secret. For those of us who who are you know, who can use audio, we can we can plug in a headphone and listen to it. For those people who need Braille, they can plug in a Braille display. There’s all sorts of ways that we can make this accessible. But the first and foremost thing is the legislation that regulates the ballot needs to provide opportunities that the the government, from a political standpoint, need to give Elections Canada the freedom to make it happen. But they’re so afraid of it for some reason.
Donna Jodhan, LLB, ACSP, MBA: I wonder why.
Diane Bergeron: You know, they’re just terrified of giving this. All the things can be tampered with and everything else. Well, yeah, they can, but at the same time, paper can be tampered with, too. So, you know, we need to create the system from the ground up, and you can you can do that. You can do that without changing the legislation just to try it out and create the system. The problem is they’re trying to fit a square peg into a round hole. They’re trying to create something that works with the paper ballot and that works with the legislation. My argument is they should forget about the legislation off to the side, come up with the system, fix the problem, and then change the legislation. And the solution is there. That’s what I think they need to do.
Donna Jodhan, LLB, ACSP, MBA: What do you say to skeptics who argue that assistive help at the polling station is good enough. How do you explain, succinctly but persuasively, why privacy and independence at the ballot box or civil rights are not conveniences.
Diane Bergeron: So when I have when I, when I’m voting and I need to use somebody, they I always tell them that this is not this is not good enough. This is absolutely not good enough. How do I know that person’s going to mark the ballot the way I want them to mark it? How do I know that if they did that, that they would keep my decisions secret? How do I check to make sure that they didn’t accidentally spoil my ballot? There’s no way for me to confirm any of that. And their answer to me is always that person takes an oath to to keep it secret, to market the way you know that you want them to. And I always remind them that my ex-husband also took an oath at one time. And with the divorce rate in this country, that should tell people how much they should trust this stranger that they don’t know to take an oath. It is unacceptable. It is. It is. It is not, in my opinion, based on a human rights perspective. Every Canadian, according to my what I’ve always learned in this country is every Canadian has the has the right to vote independently and in secret. Unless of course, you’re blind. Then apparently that doesn’t matter, because we get this person that we don’t even know and we’re supposed to trust them. So if I can’t trust the person I’m marrying, I certainly cannot trust this perfect stranger.
Donna Jodhan, LLB, ACSP, MBA: I love that analogy, but it’s true. I mean, you know, somehow they don’t understand that in the case of a blind or sight impaired person, privacy is so important. What do we do? What do we do to convince them? How can we?
Diane Bergeron: I don’t know, Donna. You and I have been at it for what now? Like 15 years? Yeah.
Donna Jodhan, LLB, ACSP, MBA: Yeah, yeah.
Diane Bergeron: I would like to say, though, I do think that Elections Canada does try. I think that they do. They do a lot of innovative things. And they keep trying to, to fit that square peg in. But until the government says go off to the side, figure this out and come back to us with this perfect system, and then we’ll change the legislation. It’s not I don’t think it’s going to go anywhere.
Donna Jodhan, LLB, ACSP, MBA: I agree. Now, you let Cnib guide dogs and now help drive its growth for business owners, transit agencies These and hospitality listener leaders listening. What are the top access mistakes you still see with working teams? And what’s the quick start playbook to fix them?
Diane Bergeron: Wow. You know, there’s this assumption that a dog is a dog is a dog, and that’s not true. I think that it’s important for, for any customer facing business to understand that the dogs that that are chosen to be guide dogs are they’re not just chosen. We don’t go. You know, we don’t go down to the pound and pick a dog and go, okay, we’re going to slap a harness on it and go somewhere. These dogs are bred specifically using genetic information to get the best possible outcomes. We look at behavior. We look at health, we look at temperament, we look at trainability. There’s so many things that we think about. And I’ve learned so much around canine genetics. I did not know that a dog’s comfort level walking up and down stairs is actually actually baked into their DNA. So if we if we have dogs that are not comfortable on stairs, you often see it in in the majority of the litter. And so we won’t use any of those dogs when it comes to looking at breeding and so on, because we want to make sure that that’s not there. So, you know, you have to make sure that that dog is the creme de la creme of dogs and the trainability and and so on and so forth. So these dogs are, are the, the perfection of these dogs, if you want to call it that starts before they’re even conceived. Because we look at the, we look at these dogs from five generations back to see the history we look at, like there is a world registry of information about genetics on service dogs.
Diane Bergeron: And so there’s all sorts of information. And then you and then you have geneticists that are working on, you know, you have a dog, you want a dog that has confidence and, and and has drive, but you want them to be quiet and, and at the same time. And so if you have a dog, that’s for example, you have a dog that’s got a little bit too much energy. You probably want to breed that dog to a dog that’s, you know, fairly lazy and doesn’t want to move that much. And hopefully the puppies in between will come out with that, that middle ground. So there’s a lot of genetics and research. And I would say science that goes into that, you know, those puppies. And then right from day one. Those dogs are they’re interacted with in very specific ways and monitored and tested for their right up, like, before they even leave their mom at eight weeks old. There’s lots of checks to see how that dog is interacting and and what it’s doing. And then they go off with the puppy raisers who are very specifically working with those dogs. So this is a big cycle of getting that dog prepared. And in the long run, the dog comes back from their puppy raiser, goes through training, and eventually is matched very specifically with the handler.
Diane Bergeron: It’s not just any dog for any handler, it’s a specific dog for a specific handler so that the match, you know, the team can be successful. And even at that point, the success rate of the dogs going through the program is only 40%. So that person and that dog walking into their business and to their taxi service or whatever, rideshare or, you know, restaurant, whatever it is, they’re walking in with a dog that has made it to the top. We didn’t just send them the dog with an instruction manual and said, here’s how you work your dog. There is training with that. Each specific dog and that person puts in a lot of work into that dog. So that dog is coming into your business. There’s been a massive investment into that dog and the handler. So the dog coming in is probably better behaved than the majority of the humans coming into your business, because I don’t know any human that goes in there that before they were even conceived, their parents sat down and said, let’s look at five generations back to see what kind of match we’re going to have. You know, this is something that is very scientific. And so, so I, I really think that what the business owners need to know is the dog that’s coming in is specialized in doing a job. It’s creating independence and freedom for that individual so that they can have the life they choose, that they want to have and do what they want to do.
Diane Bergeron: And by refusing the dog and this is people say this to me, I’m not refusing. I’m not refusing you. I’m refusing your dog. And I’ve often said my dog did not call for a taxi. She’s not allowed to use the phone. So it’s me if you refuse the dog, you’re refusing me. We are a unit. This is a human rights issue. And so understanding that that dog and that person is connected. You can’t say I’m refusing the dog because refusing the dog is refusing me service. And that is discrimination, plain and simple. So I think people need to train their staff to understand that that person has the right to be accompanied by their dog. I also think they need to understand that they have rights. The handler of the dog needs to keep that dog under control and behaving appropriately. And they do have the right if the dog is acting inappropriately. And I mean, if the dog’s, you know, stealing the stake off the neighbor’s table. They do have the right to ask the person to take their dog and leave, because if I stole the stake off the neighbor’s table, they would ask me to leave. So, you know, they do have rights themselves. But just for being. Just for for being accompanied by a guide dog. It’s against the law. And I recommend you don’t do it.
Donna Jodhan, LLB, ACSP, MBA: I guess I just learned something very interesting about, you know, how guide dogs are developed, and they were all about their genetics and, you know, wow, I didn’t know this before now.
Diane Bergeron: Oh, yeah. It’s this is this is it’s a big process. And I think people think we just, you know, the dog falls out of the sky with a harness on and we grab it and walk away and hope for the best. This is huge. It’s a huge process.
Donna Jodhan, LLB, ACSP, MBA: I see the clock is starting to wind down, but I wanted to ask you this question. Many countries are facing guide dog shortages, and Cnib launched a puppy development center in Ontario and forged cross-border partnerships with the US schools. What did it take to stand that up and what matrix? Wait times, graduation rates, you know, retention tell you that the system is improving.
Diane Bergeron: Well, you know, I would say that first of all, you have to have partnerships in this in this space a breeding program is like a colony. And if you stick with your own colony, eventually you’ll end up with too much of the inbreeding you’ll end up with. You know, there’s any geneticists who are listening. You know, you’ve got the inbreeding, the cross breeding, the outbreeding, the the overbreeding. Yeah. And you want to make sure that you have diversity within your colony. A to make sure that you’re bringing in different genetics and you’re not getting too much into inbreeding, but also so that you can end up bringing in different personalities and different skill sets. Right? Because if you think about people if you think about the needs of people for that need a guide dog and you put it on sort of a bell curve or an, you know, an arc, you’ve got the people at the top of that bell curve which, you know, the dogs are they, they find the door, they find the curb, they find the elevator. They do all the things the guide dogs are supposed to do. And they’re, you know, they’re what I call the the average, the average guide dog, the guide dog that does all the things that guide dogs do. And then there’s the other end of the scale where that person just gets up and basically goes for a walk around the neighborhood and comes back, and all they need is a dog that goes around the neighborhood safely.
Diane Bergeron: Yeah. Right. Yeah. And that’s not meaning to say that that’s not a good life. Quite frankly. I’d like that life right now, but but but you don’t need a high energy dog with a massive amount of confidence that can get on planes and trains and automobiles and and everything else. And it can handle crowds and loud noises and sirens and, you know, so that’s the other end of the scale. So you need dogs from one end of that arch to the other end of that arch. And, and you want to make sure that you if you don’t have all of that within your colony, you have to work with other other organizations to get that those genetics and that into your into your colony. The way to do that is to work with, in partnership with other guide dog programs and say, hey, we’ve got this great we’ve got this great lab. We think that this is the, you know, she’s beautiful, she’s got all the great things, but but we don’t have a good partner for her. They have a good partner. So then we we work together and we create. And then both of those dogs end up adding to the breeding of both of our colonies. So you have to have the partnerships in the breeding. During Covid especially we struggled the, the issue is that there’s more people that want dogs than there is dogs.
Donna Jodhan, LLB, ACSP, MBA: Dogs.
Diane Bergeron: Yeah. And, and trainers to go around. There is a shortage of guide dogs, mobility instructors and guide dog trainers. And even if you’ve got all the trainers that you want, if we don’t have enough volunteer puppy raisers to raise those puppies, I can’t, I can’t breathe and have, you know, 500 puppies. If I only have 100 puppy raisers, what do I do with all those dogs? You know, so you have to. It’s like the cycle has to be perfectly matched right from the beginning to the end. The end, which is the handler. And of course, it actually is more like a circle, because eventually that handler is going to need another dog. And so they have to do the full circle right back to the beginning. So it’s it’s a very tight knit circle. And if you don’t have partners within that system to help you when you have a shortage and they have a, you know, some schools, they, they had the problem, they had too many puppies during Covid.
Donna Jodhan, LLB, ACSP, MBA: Okay.
Diane Bergeron: And they weren’t running classes because of Covid. We needed puppies like we needed dogs. So they gave us their dogs and then we gave them back dogs and we like. That’s what partners do. You know and it really worked very well. We’ve got partnerships all around the world now that we work with.
Donna Jodhan, LLB, ACSP, MBA: O di. We’re almost at the end of our session here. But based on your wealth of experience, your wealth of knowledge, your education and everything, I sure admire what you’ve done. What words of wisdom would you have for future advocates?
Diane Bergeron: You know, I think I would love to say that the time will come where advocacy is not needed anymore, that the world is just built for everybody. And things are just, you know, part of life. I don’t think I’m going to be alive if that ever happens. I think that it’s going to take much longer than the rest of my lifetime. And I’m not sure we’ll ever get there. Advocacy for me is, I would say you when you’re advocating there’s different ways to do it. You can advocate from within and become a part of the system. You can’t beat them. Join them. Type perspective, help to build, help to create. Sometimes you have to go from without and really push and and become more forceful. Sometimes you have to legislate, sometimes you have to get the media involved. Sometimes you have to beg, plead and grovel. And sometimes you have to, you know, become friends with somebody so that they can understand. But ultimately, advocacy is knowing your audience and understanding that you need to change your strategy based on the audience that you are trying. Because really, the problem with the world isn’t the electoral system or the you know, the lack of Braille places or the policy that isn’t working properly. The problem is the attitudes against and the stigma that is held against people who are blind or partially sighted and deafblind. And that’s what we need to change. You’re not going to change any of the systems until you change the attitudes. And that’s got to be the number one piece of the puzzle for advocates. Know your audience and know that it’s their attitudes you have to change. So you have to you have to get them to change their mind, preferably in a nice, friendly way. But sometimes it has to. You have to change their mind through legislation, but that’s what you’re trying to do, ultimately.
Donna Jodhan, LLB, ACSP, MBA: Diane Bergeron has been a pleasure. Absolute pleasure listening to you. I’ve learned so much.
Diane Bergeron: Well, thank you for having me on, Donna. We’ve been we’ve been friends for a long time, and I very much appreciate the invite.
Donna Jodhan, LLB, ACSP, MBA: And if ever you wanted to come back, please do. Thank you again. It’s been a pleasure. I hope we sometime we will be able to meet up and have a glass of wine and take it from there.
Diane Bergeron: I was up for a glass of wine. Donna, you know that.
Donna Jodhan, LLB, ACSP, MBA: I know that, I know that. So take care. Hi to your hubby.
Diane Bergeron: Thank you.
Donna Jodhan, LLB, ACSP, MBA: And we will talk to you soon.
Diane Bergeron: Sounds good. Take care.
Donna Jodhan, LLB, ACSP, MBA: Bye bye.
Diane Bergeron: Bye bye.
Donna Jodhan, LLB, ACSP, MBA: Bye bye.
Podcast Commentator: Donna wants to hear from you and invites you to write to her at donnajodhan@gmail.com. Until next time.
Donna J. Jodhan, LLB, ACSP, MBA
Global Leader In Disability Rights, Digital Accessibility, And Inclusive Policy Reform
Turning policy into progress for people with disabilities.
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Published in Remarkable World Commentary