Max Brault: Race to the Starting Line

Stuart Murray  0:00  
This podcast was recorded on the ancestral lands, on treaty one territory, the traditional territory of the Anishinaabe Cree, Oji Cree, Dakota and the Dene peoples, and on the homeland of the Metis nation.

Amanda Logan (Voiceover)  0:20  
This is humans on rights, a podcast advocating for the education of human rights. Here's your host, Stuart Murray,

Stuart Murray  0:30  
today on humans on rights, my guest is max bro, a national leader in accessibility, inclusion and disability rights. Max who grew up with a rare condition called spinal muscular atrophy, has spent decades helping governments and organizations remove barriers and build spaces where everyone can participate fully and with dignity. He's also the author of a new book The Race to the starting line, a powerful explanation of what true accessibility looks like and why equality must begin long before the race even starts. Max, bro, welcome to humans on rights.

Max Brault  1:10  
Thank you, Stuart, for having me on board.

Stuart Murray  1:12  
Max, we're going to get talking about the book. We're going to get talking about a lot of things, accessibility, Canada Act, so many things that you've written about and you've lived but before we do, I always sort of just like to throw it to my guest and say, I'm delighted you're here, Max, tell us the listeners a little bit about yourself, and then we'll get into to get into your book and a lot of other things personally. But just give us a little background on who Max

Max Brault  1:34  
bro is. Well, first of all, for any of your individuals who are blind, who are listening in, just want to give a brief description of what I look like, a gentleman of 55 years old, with what my wife and I call blonde hair, a white beard. Beard. I have blue round glasses. I'm wearing a purple shirt with a really knockout bow tie. And repeat the question, if you don't mind, yeah,

Stuart Murray  1:58  
just and by the way, it is a real knockout bow tie, I must tell you, it looks fantastic, as long as your shirt Max, just a little bit about who you are and just your background from a personal perspective, before we talk about some of the advocacy work that you've been so active in, yeah.

Max Brault  2:14  
So I Young as a young man, when I first started this journey, around 40 years ago, I realized with having spinal muscular atrophy, which we commonly call as SMA, I realized I was going to be entering into a workforce with a world that's not prepared for people with disabilities. So at first, I chose to take the entrepreneurial route, which most of my family was, in an entrepreneurial spirit, and then eventually working with disability organizations getting into the federal government and helping to influence a lot of key people to look at people with disabilities as a particular angle for dealing with the unemployment that's been happening around the country, that there's a lot of talented people with disabilities, and I was helping the federal government and hiring a lot of people with disabilities, and then moved into changing policies and all that kind of fun sets. At the RE end of my term in the federal government, I ended up working on something called Bill C 81 and I worked about four years on that particular front, which would end up becoming the accessibility Canada Act. And then I left there, and I went and worked for the what I jokingly say the dark side. I went and worked for corporations, for BDO Canada at the time, and learned how to be a consultant, and took everything I learned from being a federal public servant and created a very successful business line with BDO Canada.

Stuart Murray  3:35  
So Max, you've had quite an experience. Thank you for laying that out the background, and particularly, I think, on the issue around Bill C 81 one of the things I was just asking, you know, kind of, in my own mind, when I was reading and looking at your book, is, how did the ACT come to be, you know what? What's its purpose? From your perspective, and the advocacy behind getting C 81 into law in Canada.

Max Brault  4:02  
Uniquely, you know, I say this in my book, and I've been saying this for a long time, the Charter of Rights says, Thou shall now discriminate against people with disabilities. But the reality is, is it does not explain to corporations or businesses or people, what does that mean? What does that look like? And again, you know, how do you apply this for education? How do you apply this for work? How do you apply this for, you know, building environments. There's very complex problems that need to be solved, but also there are some solutions that need to be addressed. And again, the other thing is, is that we started seeing around the mid 90s, you started seeing provinces coming up with their own legislations. And the problem is, in my opinion, it's great to have the provinces doing their legislation, but we'd also need the federal government to do their own version of it as well. Because what you don't want is an organization to say, Well, I'm a federally regulated organization. So I don't have to pay attention to the provincial stuff. And so my philosophy, and a lot of other people, is, if you have a provincial, get a federal so then all aspects are covered, right? That's what you know the bill was supposed to intend it to do, however, a cloak to 19,000 federally regulated organizations.

Stuart Murray  5:19  
So so so on that far Max, was there a province that was, you know, in Canada, that was leading the way that you thought, you know, these, this province is doing a good job, or, you know, at least they're doing something we need to do a better job. And therefore we need to do something from a federal stand, and call it the accessible Canada Act. Was there something that you thought was going on that was worth mentioning.

Max Brault  5:43  
Yeah, Ontario, at that time, had had a piece of legislation, provincial legislation, that was in for a good little while. And not only was it in there for a while, but they had enough that when we started talking to the Ontario government, we realized that they also had some experiences of what was working and what was not working. And so we were able to take that back to our table and go okay with with Ontario's experience. What, what can we avoid, and what can we build on? And there, and I have some examples, like one of, one of the best examples of that is Don't, don't go around and dictate to people what needs to be done. You need to come up with a lot of regulations and documents that explain to people what needs to be done. For example, built environment really explain, you know, how wide is a door need to be? How you know, what are all the specific, specific requirements? Because at the end of the day, just saying, You need to be fully accessible. Again, you go right back to what I was saying about the charter. You leave it open to people to interpret. And that's sometimes not what you want to do. Sometimes it's better to lead people and say, here are the key things you need to keep in mind, and then run it Max.

Stuart Murray  6:53  
One of the questions always, I think, with these issues, you know, we always love to sort of talk about the charter and equality of rights and all of that. The reality is, a lot of times people, for particularly in the disability community, they don't seem to have a voice until something there's a breaking point, as opposed to somebody you know. And I love the way that you know the I'm going to ask you about how you came up with the title of your book. I think I know. But the point is, is that sometimes you look at something rather than looking ahead and being proactive. You wait until it's almost like, hey, the house is burned down. There was a fire. Gee, maybe we should have a fire department. You know, why is it that you have to have such bad examples to understand, where does the dignity and the human rights of these elements come in at the beginning. You know,

Max Brault  7:41  
that is a question that I think has existed since time on Memorial from human rights. The number one problem is Stuart is, even if we have legislation and regulations, we still live in a law society where everything is going to be challenged and has to go to courts, and really, many organizations might not abide by the law until it's been challenged and the courts actually go, Yeah, we agree with what was written, and we've seen that all the time. We've seen that with the indigenous folks. We've seen that with the gay and lesbian communities, and now we're seeing that with persons with disabilities. And one other thing for your listeners to know, the number one group that they received more complaints from were persons with disabilities in the working environment. I think the ratio I was hearing it was like, for every one that was from somewhere else, they would have five for persons with disabilities in the working environment. So it was clear that there was needed to be some kind of federal legislation and provincial legislations to follow through, to start explaining what that needs to be done in the employment scenario.

Stuart Murray  8:48  
So advocacy is a big part of what I try to sort of talk about in this podcast, Max, you know, taking action people that are interested in trying to help others or trying to get involved in organizations. So talk a bit about, if you can the advocacy behind creating the accessible Canada Act, or Bill C 81 as it is known. Well.

Max Brault  9:09  
The odd thing is, when we were it was the first Trudeau Government, and he sent out those notorious letters to all the all his ministers at the time, and Minister culture was in the place of Minister responsible for persons with disabilities, and she was told one thing, she was said, Go in and get a pulse of from the nation what they think the Act should look like and make it happen within the four and a half years. And so for the first year and a bit, we went around the country. I didn't go but a team of people went around the country listening to, what do you want to hear? What do you want in this act? And we heard from individuals, we heard from corporations, we heard from a whole lot of people, what, what, what we wanted to hear. Sadly, I have to say Stuart that when it came to the timing, was. Really poor. After nine years of the hyper government in the organizations that represented people with disabilities were basically downsized and had no money and were lacking resources, so they were in a fighting mood. So whenever we went out in the government and started talking to them, all they wanted to tell us is how they needed money to get things done, and they weren't giving us too much useful information that we could turn around and produce a piece of legislation. So we really needed the input from people with disabilities. And in my book, we talk about how we did something really creative to address this fact. And I sat back and I told Minister cultural. And at that time, my boss saying, Okay, what are we going to do about this? And I said, Give me about 48 hours, and I'll come back with an idea. And the idea was, you know, one of the great things about the federal government is that we have hundreds of people with disabilities working in the federal government at all levels, in all stripes, in all departments. So we can find somebody who knows the tax law for accessibility really well. We can find somebody who works in it really well, like we can find those folks really, really well. And so I said, Let's do a conference where I find the 100 and so folks that are specialists in these fields, put them in a room together and start figuring out what, what, what should the ACT look like. And so the scary thing for your listeners is, is that when I, when I proceeded to do this, it was so quick that I forgot to ask, you know, a friend of mine, well, actually, I actually asked a friend of mine, can you hire me a consultant that could do the consulting work and get them meet it out of the people, but I forgot to ask that person, how are they going to do this? Right? So within hours of this event happening, I went back to my colleague, and I said, Hey, how is this gonna look like? And he goes, Oh, he plays with Legos. I'm like, he does what? And then I and the room I had it in, it's a famous room here in Ottawa where, if you're on bank and spark street, you can look into this one part of the government offices, and it's all glass. And so you would see about 175 disabled federal public servants playing with Legos. And all I could see is in the local press, federal public servants playing with Legos. You're right, right? It was a momentous event, because what ended up happening is we had, like I said, all stripes and all colors and all works of life in there with people with disabilities, really giving us an idea from every sector what needed to be done. And that's where we came up with at the time, was eight pillars. We shrunk it down to seven, and we now had the bones to the act. Now we had to figure out how to put the meat to the to it all. And so it, I like to say two things. Legos was the process and how we got this piece of legislation put together. And it was built by people with disabilities, for people with disabilities, and I don't think there's any piece of legislation prior to this or currently that can say that for their population in which they're trying to help.

Stuart Murray  13:12  
You know, that's that's a great background for for what the accessibility Canada Act is and the advocacy and how it got formed Max and I appreciate that, because I think one of the biggest challenges with any level of government, when they come up with policy, they you know, typically, it's done with best intentions, but usually voices that typically haven't been at the table. You know, they've been silent. They haven't had an opportunity to participate. You know, those voices are not sometimes, always heard when policy or legislation starts to be formed. So you're suggesting and saying that in the case of the accessibility Canada Act C 81 that's not the case. This was done by disability folks, for people with disability and so, you know, that's a bit of a home run, if you will, for the ACA or the accessibility Canada

Max Brault  14:06  
Act, yeah, and I will be frank, in the sense that we did miss a few things. I mean, the new legislation that's coming out of Saskatoon or, sorry, Manitoba, they had a whole part about with animal service animals, we forgot that, and which is that, oh, man, we should have had that. The other thing that they were missing is AI. We never thought about AI. AI never came up in those discussions, but the internet was very much a focal point to it, like how to make the internet more accessible, and that's why I added a chapter in my book specifically about AI. And then the other thing that we missed, but the Senate caught, and that was about episodic disabilities, and whatever episodic disabilities are, for anybody who's listening to this conversation, it's about anybody who comes up with cancer or breaks a leg or has some kind of ailment that puts them down or temporary. Literally affects them for several months or several years. But once it's done, it's over and bigger, back to a normal kind of life, whatever a normal would be. But you get where I'm coming from, and we believe that it was really important to put episodic disabilities in this particular work as well.

Stuart Murray  15:16  
So Max, just to your point, specifically realizing that you forgot about service animals, were you able to sort of find a way to get that into the act?

Max Brault  15:26  
No, it wasn't until, I don't think there is anything yet that has been nobody's really done a big push. There's been a big push to put something about AI. So the act now addresses that. I think that there needs to be something that needs to be added to that. But again, it cannot come up for me, who doesn't use service animals. It needs to come up for the community and say, Look, we need to shore this up. Can we put something about service animals in there? And I don't think the government would be hard pressed to say no. They would just say, you know, try to figure out how to make that, you know, happen. Yeah, I know.

Stuart Murray  16:00  
I mean, like a lot of legislation, things change. I mean, as you say, it's hard to criticize any organization you know that was looking at legislation. I mean, when did, what year did this come in? C 81

Max Brault  16:10  
well, C 81 came into effect. So it was 2020 2019, and when it was agreed upon to being ascent. So it was, like six months later. So, wow, it would have been 20. So 2020 January the first 2020.

Stuart Murray  16:29  
Is when it came into effect, say, five or seven years ago. Yeah, about seven years ago. Yeah, yeah. So, you know that, and you know the part of, I mean, you know, I guess that's a Freudian slip on my part Max. But you know, I guess part of it, just to sort of build myself out here, a little bit, is to think that, you know, with all of the work that's been done within the disability community and all the challenges and the advocacy barrier free environments, to think that this has only been done some five or so six years ago is a little troubling, I guess, because, as you say, this has been a conversations have been going on in since you can ever remember. Yeah.

Max Brault  17:08  
I mean, it was there before I was born. I was born in 1970 so it's been, it's been around this country, probably since the root of this country, to be honest with you, yeah, I don't talk about too much about that. In my book, I talk about the conversations with disability really began in 1967 but it really has been around for a lot longer. If you really, really trace the disability argument, people with disabilities used to be institutionalized, but back then, the only institutions we had were prisons or and, and so people would go to institutions to be taken care of. And you can just imagine the mess that was. There was a whole there's a whole history about the Deaf culture and how we had deaf schools all across the country at one point, and how they were funded by the provinces, or, at that time, the territories. So there's a lot of history with disability in this country. It's just, I would say it started really culminating in the 80s. It's when we really started talking about what kind of pieces of legislation should be in place to ensure people with disabilities have a fair and equitable chart of having a nice and full life in Canada.

Stuart Murray  18:21  
So Max, one of the things that you know, you mentioned in your book, and anybody that does research about what the background to the accessibility Canada Act is, you know, it talks about this vision of being barrier free in Canada by 2040 so now I can get my math right. Now that I got this figured out, we're 2025 we're about to turn the calendar to become 2026 that just seems to me to be one hell of a long ways away to accomplish what really should be everyday living for everyday people. If we do believe that people are all born with equality,

Max Brault  19:00  
I agree it is. Let's do some math. If you give people too long of a spectrum, then people will put it off anyways, until the last five years. Anyways, right? And my philosophy, and it wasn't me who made the final decision on this, but if you don't make it achievable within a generation or two, then people just put it off. So that's why it's 2040 and look, the reality of this situation is, are we going to have all of it done by 2040 I don't suspect it will be right. I was expect that around 2040 there'll be some celebrations about how a lot has changed. Sure, road still needs to be traveled, and a lot of things still need to be done. And so then at that time, and whoever is going to be kicking the bucket around that time, can start honing in what the five pillars, you know, might be. Instead of being seven, it might be five, for example, right? And start holding in on the is a very, very specific things that need. To be done, but I don't see some things disappearing as well.

Stuart Murray  20:03  
Yeah, no. And I mean, I look, I appreciate your your thoughtful and respectful approach to the process, but Max, you know, one of the things I don't know if you can bring out a crystal ball, such a thing exists, and if you do have one, there's other things I might ask you after this podcast is over, but is there some aspect of the accessibility Canada Act that you say, you know, this one is going to be very difficult, or these two are going to be very difficult to actually achieve by 2040 is there something that you would look at and say, you know, this is where there may be a little bit of a challenge?

Max Brault  20:40  
Well, one of them actually was, and that was with ASL and LSQ. LSQ, for anybody who's listening, is the equivalent to ASL, which is the French a sign language interpreter's language, or sign language. And remember at the beginning, I said he was eight, and the eighth one was sign language, and that was to ensure that sign language was appropriately used by all federal institutions and all federal regulated organizations, and somewhere in between. And this would have nothing to do with me. Somebody went out and found out the math behind it and said that the amount of money that would be put into ensuring that it would be a third language for Canada would be the same amount of money that we would put for wartime. And a lot of people got scared, and they said, Okay, why don't we just shrink that and put it into one of the communication pillars? But at the end of the day, I really do think we should have really explored that between you and I, because if we look at of our American cousins, and they're still doing it today, even though there's there's an anti statement about people with disabilities there, you still see, whenever there's an emergency, you will see somebody with sign language behind the governor or behind the person who's talking about the emergency. Even see music acts coming out of United States where they actually hire somebody to be on the one side of the stage and is signing the music. So you're starting to see sign language is becoming kind of a universal language that everybody's buying into, if that makes any sense, right? And I fundamentally believe whenever our politicians go out there and do speeches like, you know, before I came on the air with you today, we had the Prime Minister talking about how he's going to aid some of the industries that are going to be infected. And, you know, there's going to be people on disabilities that are going to be affected by that. And why isn't there a sign language interpreter, and the Prime Minister addresses the country, talks to the country, in my opinion, there should be a sign language

Stuart Murray  22:43  
interpreter beside him, you know, yeah, you make a great point. Max. And you know what? What always, I find fascinating. And I mean, I'm just a student of this. I, you know, when I was the inaugural president, CEO of the Canadian Museum for Human Rights, we were doing a new build. So we were fortunate that when we went to the disability community, they were able to give us really good advice that we could put into the build, as opposed to doing a retrofit. You know, that's always very, very difficult. But having said all of that, Max the one element that always was in the back of my mind that every time we talked about an issue, whether it was a sign language, or whether it was accessibility for washrooms, even though, you know, the building we were in, the Canadian Museum for Human Rights, is a very complex building, and I think the if I if I understand correctly, I believe the Canada building code would have allowed for two accessible washrooms in a building that, frankly, is very, very challenging to get around. And so we had to just make a decision to say that that that's just not the way it's going to be. There's going to be accessible washrooms on every level. But you know, the first reaction from the majority of people in the conversation is, how much is that going to cost? And I said, are you talking about financial terms or human terms? Like, let's make sure that we have a discussion that is not going to derail what we're doing, simply from a money standpoint, when you're talking about human dignity. Well, here's a really interesting point. I had a conversation about a few years ago when I was working with the act, and I was talking to the Builders Association of Ontario, and basically they had done, recently done a study and said that the actual cost right from the start of building accessibility, right from the start that made sense was only 2% more. Now you go and buy a house, you go and have to retrofit a building. Now it's 20 to 30%

Max Brault  24:35  
between you and I. I would rather deal with the 2% cost and deal with the 20 or 30% cost?

Stuart Murray  24:41  
No, I couldn't agree with you more, and

Max Brault  24:44  
I think what you guys did was great. You stuck to your guns and said, Okay, we're going to put an accessible washroom on every floor. And I don't know if the listeners know, but there are more ramps in the Museum for Human Rights than anywhere else I've ever been. I. I go out, I'm an electric wheelchair. Because if I had to hop, my arms would have been nice and big, and I kind of lifted my wife and said, Whoo, yeah, I was an electric wheelchair, so it was not an issue, yeah, but I'm really amazed. You know, you guys did a really good job with that.

Stuart Murray  25:16  
Well, I mean, I'd love to sort of pat myself, and I might my team on the back Max. But the reality is, I think we were, we found enough wisdom to say we need to listen and work with the community. Because I can tell you, the very first meeting we had with the disability community was not good, and we realized it's it there's we were talking to them rather than listening with, you know, from them. And I think that was a big experience that we learned, but at the end of the day, and I'm glad you brought it up. And thank you so much for visiting the Canadian Museum for Human Rights Max. But the reality is, when we opened it in 2014 and I hope things have changed dramatically in the world since, but it was the most culturally accessible building in the world because of that fact,

Max Brault  25:59  
you know. And again, when I went in there, the current person who the curator of the museum, she was worried that there was still a lot of stuff to be done. And I'm like, Look, this is the plague. And the problem with people with disabilities is that with new technology, with new advancements, you're constantly changing. You're constantly working with the change, right? And the best thing you could do as an organization is constantly work and have conversations with the community about what can be done and what could be done tomorrow. Because, look, there's always things you could do today and there's always things that you got to put off tomorrow, because it's going to cost millions of dollars to change. And like an example that I thought the museum was really beautifully well done, but there were some points of technology that I could see, wow. We could update this with this kind of technology, and we can update this with this kind of technology. But I realized one thing before I opened my mouth and I said that to her, by the time they institute it, it will already be grandfathered in, but there's something new when it came out, trying to stay ahead of the curve is, is a losing game, right? So you need to be able to come up with for lack of doing, our community is going to hate me saying this kind of an acceptable what can we achieve today, right? And then what could we keep in our eyes on for tomorrow?

Stuart Murray  27:19  
Yeah, no. Look and Max, you know what I love about your approach and how you, you know wrote, how you wrote these, this in your book, is you are passionate. You're an advocate. You know you have just a tremendous amount of leadership in what you do, but you take a very reasonable approach to try to achieve something that you bring people along with you, rather than become, you know, sort of having friction or having difficult conversations, you know, you find a way to bring people along. And I think that is the measure of who you are personally.

Max Brault  27:56  
Well, thank you. And my mother would really love to hear that, because she raised me to be that way. The reality is, as I go back to what you were saying earlier, I'm an individual with SMA, which is affects my knee physically. I don't have a visual problem. I don't have a hearing impaired problem. So for me to sit here and talk to you about visually impaired or deaf community or neuro diverse, I feel much more comfortable if I bring a colleague of mine who is represents that community and has that discussion, because to me, I will never be able to address that to the best of what that community could do. Yeah. So my career has always been I could talk about physical barriers very well. I could talk about employment very well, because that's very, you know, omni directional, Omni whatever. But when it comes to very specific disabilities, I always have a team of people that I bring with me, that that, know, you know, what they why I'm bringing them along is to make sure that that voice is heard, right? Rival artists make sure that voice is heard.

Stuart Murray  28:58  
And so in your book, the race to the starting line. Max. You know, you talk about powerful personal stories, share some of the stories that you would love to have listeners get a sense of so they can go out and purchase your book. The Race to the starting line.

Max Brault  29:16  
Well, I mean, one of the things they did in my book is I brought a lot of other people into the book that brought in their stories and their fun stuff, if that makes any sense, right? So I don't know what, what particular story I would bring in personally, but, I mean, I talked about the lego one, which is my favorite one, by the way, sure, yeah. But the other one I have is more personal. It's more about, you know, going back to the Human Rights argument when I was a younger lab, and I was watching a lot of my friends, you know, getting jobs and and doing, you know, getting out of university and going to get to work. You know, I had a conversation with my father when I was young, and he's like, it was my job to help interpret, you know, what the. The Charter of Rights set it was my job to go out there in the world and help, you know, make people understand of what people with disabilities are looking for, to educate and to be straightforward with you. When I got out of university, you know, I went from being able to walk with crutches to all of a sudden I was confined to a wheelchair. I realized that that was my destiny is to work with the community and help them go somewhere, and I've never looked back since Max.

Stuart Murray  30:28  
Just for listeners, if you don't mind, just let's go real down a personal path for a second and talk about what spinal muscular atrophy is.

Max Brault  30:38  
Okay, spinal muscular atrophy when I was younger, they didn't really know how to tell me what it was. They used to tell me, Oh, you got a version of Lou Gehrig's disease, right? And I was, I would, I'm a big baseball fan, by the way, so I knew, Oh, okay, I know what Lou Gehrig's is. And then figured out, okay, I got a version of that that gets that is so far from the truth. What what SMA is, it's for lack of terms. It's a neurological disability where my nerves, over time, literally die off, and so my muscles die off with my nerves, so I slowly lose my ability to function and do do daily things. So when I was a younger lad, I was able to play rugby. Now I'm an electric wheelchair. I definitely can't play rugby, or unless they cage rules and they allow electric wheelchairs and a scrum. But I don't

Stuart Murray  31:35  
think that will ever happen. Well, you never know, you never know, but I hear you, but you

Max Brault  31:38  
hear me, right? And the point is, is that every few years, we call it the seven year cycle, I'm constantly losing my muscle capacity. So from when I was a youth, I used to walk to now where I can't walk, where, at one point I used to be able to get out, get dressed, on my own, I can't anymore. So I'm constantly, you know, losing my abilities to function. Now here's the good news about me. I was just talking about my life, about this, I am recognized in this country to have be the least affected by SMA compared to most people. And what I mean by that is I still had, up until my mid 20s, I was still walking and running and chasing and doing things. On a physical level, I wasn't as strong as everybody else, but I still had an idea what it felt like to be to have legs underneath me, go upstairs and do all that kind of stuff. It wasn't until I was 26 that I was confined to a wheelchair, because, to be honest with I enjoyed University too much that, you know, a little bit of drinking and chasing. Again, I know the two worlds because of that, yeah. And most people with SMA don't make it past their 40s. Really, you're 55 Yeah. So the average person with SMA usually passes away in their 40s, and sadly enough, they usually don't die of estimating. They usually die catching some kind of element, like, you know, pneumonia and all that kind of fun stuff. So when covid hit, that was a really, really scary time for me, because, you know, if there was going to be something that was going to remove me from this planet, it would have been covid infection right at the start. Yeah, interesting. So when they were talking about, you know, ensuring that people that were going to be that we're going to be most vulnerable. I was one of those most vulnerable, if that makes any sense, right? Yeah, and I so I appreciate everybody, what everybody did, even though they argued and snipped about it, I still appreciated what people did. But at the end of the day, SMA is a trajectory of losing so much abilities that something else will pick me up. Now I'm going to make everybody laugh here. I'm also come from the Montreal area, and one of the reasons why I'm in my 50s with with SMA is that the only group of people with SMA that have normal life expectancies are people from the Montreal Island, which I come from, and I just discovered that about five years ago. So, but majority of us don't live this park, the C 50,

Stuart Murray  34:13  
okay, but you know, Max Just on that point. I mean, that is worth at least a couple of questions. How is it that that that area is, you know, the Island of Montreal is able to produce, you know, individuals with spinal muscular atrophy, SMA, but have had this long tenure?

Max Brault  34:37  
Well, here's the here's the honest goodness, truth. Stuart, I created a foundation called the max bro SMA Foundation, which my book is running through, and I'm hoping, over the next few years, to raise several million dollars. And one of the number one projects I want to go back is I'm going to go back to the scientists in the Montreal area and go, instead of making this broad statement of this, can you actually show me the map behind this? And. It's just for some odd reason, families that have existed in the Montreal Peninsula, is what they like to call it, more than about five or six generations seem to have this weird mutation to the SMA strain. Wow.

Stuart Murray  35:14  
That'll be a fascination Max, you know, just, I just think those things you hear about them, and you know, as you see, there's a lot of science behind it, so to get that information out, I think would be, would be really, really fascinating. So I appreciate you sharing that. Thank you very much for that. Max. I wanted to just kind of come back again to the Canada Accessibility Act. You know, who is, if somebody were to look at that? And again, I always sort of think for people that are listening, if they wanted to get involved or they wanted to take some action, some of the questions might They might ask would be, which offices would be responsible for the implementation for the C 81 and the accessibility Canada Act, and how is progress monitored?

Max Brault  35:59  
We did three things when we wrote the act. So we wrote three roles. So the first role is the Chief Accessibility Officer, which currently is housed by Stephanie ceddo, and which she is with ESDC, or hrsdc. They're the same organization. And what she does is she goes around the country and the world, getting and finding examples of what kind of accessibility can we bring into Canada to ensure that anybody who has a question, she has a team of people that gets the best example. So that's one, right? And she represents not only the federal government, but she represents all 19,000 of the fors. So fors are the federal regulated organization. Sorry. The other role we created, which to me is a very, very powerful role, is the accessibility standard commission. So the CEO of that is a guy named Dino Sapo, and what he runs is, is the organization is going to look at 30,000 standards that Canadians use day to day, so everything from your coaster to your oven to your car to how you pump gas, to every element that your life touches. They're going to look at all these standards and ensure that accessibility is embedded in it. And I've always said when that was written, I always said when, when everything is done and over with, in about 100 years from now, that's going to be the organization that will make the biggest impact for people with disabilities in this country. Interesting. And the third one, which kind of makes sense, is the Chief Accessibility Officer. And that gentleman, which is a gentleman by the name of Christopher Stewart or Sutton, sorry, he resides with the Canadian Human Rights Commission, the National version of that right. And what he does, and this is where the impact comes in. He He is charged with all the organizations that are fors right, what they need to do with the ox has this, by the way, you need to write an accessible plan and how you're going to eliminate the barriers so every organization you can think of, you name it. Tell us, Rogers, you name it, all the big, big, big organizations need to have a plan, even all the small ones need to have a plan. And they need to make it public. That's that's the other thing. And they need to give it a copy to the Canadian Human Rights Commission, and they evaluate that. The last time I talked to Christopher, 44% of all the large organizations, so like the tell us is the Rogers, whatever you want to call them, right? Leave. 44% of them have submitted their plans. Okay?

Stuart Murray  38:52  
So Max is two questions. One is, is there a deadline for these companies, for organizations, wherever they may be, whatever size, to submit plans. And secondly, is there a penalty if, if organizations do not do that?

Max Brault  39:06  
Now, there is the great question, yes, there was, there was a, there was a an end date, which was about two years ago. Now, the problem is, is that in the act we do say that organizations that do submit don't submit, one would be charged some kind of penalty. The problem is, we're still waiting for the federal government to create that element of the plan. And right now, the way that the world is going, I don't see that happening. To be straightforward with you, and so again, you're looking at the generosity of organizations to do this. But I would argue, if you're a bank, for example, a Roger on that, Rogers like CIBC or Scotia Bank, Bank of Montreal, yeah, a TD Bank. Want to put that out there, because you want to demonstrate that. You acknowledge the services in which you're giving are accessible, or the ones where people complain about that you're going to be addressing them so at the end of the day from a bank or a credit union, this is really important from a consumer point of view, because it for me now I can tell anybody who's a consumer, I won't spend my money somewhere unless I know they have a plan, right? You can, you can turn around and go, Oh, yeah, why are you sick? Scotiabank does nothing about people with disabilities. Shouldn't use, not use them, because they do a lot. I'm going to go to TD Bank because they advertise the heck out of this, right?

Stuart Murray  40:36  
And so, so just on that point Max, how would people know people that are listening saying, Okay, listen, that's something I can get behind. I mean, that's something I can support and take action on, how would people find out which organizations have a strategy or a plan to deal with the accessibility Canada Act?

Max Brault  40:53  
Well, you can do two things. You can go on the internet, the institution in which you want to do business with, go to their website and ask for in the question, saying, Where is their Accessibility Plan? It should pop up right away and or it should be on their whatever their menu is, because one of the other things that the act says, it has to be easily found and right on their front page, go to AI and just say, AI. Go chat on this a few times, going, Hey, can you tell me where I can find X amount of corporations with their plans? And it gives me the website, boom, boom, boom, boom, boom, boom, where I can find them.

Stuart Murray  41:31  
So this is a bit of a pivot Max, but I know you have a lot of professional advocates that deal with with other issues you talk about chat GTP. Is it accessible from your perspective, or people that have issues with site?

Max Brault  41:46  
I would say no. Between you and I, I would look AI, is is a magical thing. I'm going to be honest with you, it's an incredibly magical tool. I had a colleague of mine who was in the federal government, and he retired since, and his name was was actually Jeff Stark, not Tony Stark, so he's not an Avenger. Anyway she was, and he told me one day that what chat GBT was doing for him was it was decreasing the amount of work he had to put day in today out because he was blind, and all the forms he was dueling, and all the stuff he was doing on the computer was made for people like you and I, or visually he's an added another two to three hours worth of work every day for him. So a normal day for you and I might be seven and a half, but for him, it was 10 to 11 hours a day, right? But for him, what chat GPT did is it made that that extra two or three hours, five minutes more of work. For him, it really helped him in using that technology to be able to do his job with forms and all that kind of fun stuff. And from my point of view, I'm a big advocate. I support AI to the degree to the point that I think federal and provincial governments, when they're talking about national building things we need to do as a country, one of the first things they should be doing right now, and I'm hoping that they start hearing me on this, is invest in students in the universities and colleges with disabilities and getting involved in the AI technology. Because the more we have this community, building it and designing it, and, you know, doing the fun stuff with this, the odds are either we will have more accessible AI stuff. Because the reality is, it's about data. And AI right now, right when you ask a question, it goes to all the data banks that it taps into, and I guarantee you, the majority of data banks that it's tapping into does not have a majority of stuff about accessibility.

Stuart Murray  43:58  
Yeah, it's a great point. I you know that let's, let's hope that, I mean you, you've, you've had a voice Max, where people have listened, I mean, organizations, governments, have listened to you. Let's hope that they listen to this one. Because that makes great. That makes a lot of sense, because you're trying to, as you say it, because I, I'm going to ask you just to, because I think the answer this question, but like, the race to the starting line, how did you come up with that book? Because it to me, the way you just explain how you get AI into students with disabilities speaks very much about what you're talking about with the the name of your book. But, but in your words, how did you come up with the name of your book?

Max Brault  44:31  
I got to be honest with you, it, I struggled with the name of my book for a while, and a colleague of mine by the name of Dean Emerick came up with it. And his logic was, you know, everything I was saying to him was like, remember when I was saying that the minister culture, she was given a letter and said, you had to do it in X amount of time. We had to do it in four and a half, four and a half years. We had to get it done, written. And approved ascended four and a half years, no piece of legislation I know of 90% of pieces of legislation I know usually have one or two administrations around before they become a piece of legislation, right? And it's only the emergency ones that they do a really quick they're really poorly written to be honest. Yeah, yeah, right, yeah. So this one, in this case, we got we didn't have a lot of time, and so the logic of my friend gave it to me was you didn't have a lot of time, so all you were doing is giving everybody to be ready to deal with their rights. Again, my book is about explaining to everybody what are your rights as a person with a disability? Once you know your rights now, you got to go and do something about it, you know? And again, the discussion was always, where does the ball land in this conversation? This is the conversation we were having all the time. We were always trying to make sure we were given the right footing, the right situation for people with disabilities to know what their rights are, so they can have the strength and feel that the government is backing them up, so they can make changes. And that's what the name is. Is basically the race to the starting line. Was me talking about how the act was put together, so that now we put the ball into the court that belongs to you. Yeah.

Stuart Murray  46:25  
So what a great way to, as we sort of wrap up this conversation Max, to let our listeners know. I mean, I think, you know, try to say in this podcast, it's an advocacy, education podcast around human rights. You've done both of those things. You're an advocate, you're an educator. But if people are saying, well, I'd like to know, how could I get involved like I I'm a person, whether I have a disability or I do not. But this is such an important initiative to humanize who we are, to feel kind of this sense of pride about who we are as Canada, how would people, who are some leaders that you say you should people should reach out to and maybe other than politicians, maybe only politicians. But from your perspective, if people want to take action on this issue, what would you recommend they do?

Max Brault  47:11  
So the first thing I tell everybody is, when you are arguing or picking a fight or want to bring up an issue, bring it as an issue that comes from your heart, because at the end of the day, you want to be able to argue it and feel what you're doing. Because just showing up and saying, you know, Stuart, I don't like the color of your background, I'm going to fight for that. You know, that doesn't make sense. But I love music, for example, and I use this as an example all the time. Prior to covid, I used to be able to get great seating because there was really a good system. Somehow after covid, it's near impossible for me to get great seating. So if you're like me and you really like your music and you want to get better seating, go and fight those people that are instrumental in making sure that the locations are more accessible. The seating is more accessible. Go talk to you know, more likely. It's a municipal thing, not a federal thing. Go talk to the municipal people about that. Go talk to the province. Again, it's a provincial thing. Go talk to the province. But again, find the people with the like minded issue that you have, and start building a coalition of a voice behind that, and then go and find all the politicians and the people and go and do that but, and I'll say there's a big but, research your situation, understand your situation, because everybody will always tell you, well, who's going to come up with the money? Always have an answer for some kind of quip like that, because at the end of the day, and I'm going to say this to all your listeners, money is not the end all be all. There is a lot of ways to do things, and you do not have to rely on money to get things done.

Stuart Murray  48:53  
That's great. And listen, I can't let this one go, because I also love music. And on your website, by the way, you talk about some of your supporters, and there's some musicians there that are, are supporting you Max, just, I don't. Can you maybe clarify for a second? You said that before covid, you used to get really good seating after covid, not so much, if they understand you to say that correctly, and if I did, why is that the case?

Max Brault  49:16  
I don't know. I'll give you I'll give you a really great example. I went and saw a band called some 41 they had their last concert in Toronto, and I bought wheelchair accessible seating, right? But you know what the band did? The band bought make sure that nobody could buy the two front rows in front of the disabled seating. Anybody stood up, I can still see the stage right, right, right? And I was like, Holy crap, that's really, really cool. No kidding. I'm a big fan of foo fighters. And every time I wanted to go see the Foo Fighters, they're, they don't have an accessibility saving like they don't think special. And. That really bugged the heck out of me, like, I love their stuff. And every time I could go and talk to somebody about, can you make sure it's, you know, I get a better, you know, you put a stage, you know, just in the general audience, just a little bit off to the side, that I have a better view. They're like, well, the band doesn't want that. And I guarantee you, it's not the band, right? And between you and I, it's the institution, it's it's the it's the organization that's running them or managing them, that don't care, because they got so much other things. So it's a matter of getting to the voice of the person who's going to make the decision in favor of the band. Yeah, and I'll be honest with you, it was the same crime for flying. When I was flying before covid, I had great service. I was lifted up with the lift. I was brought to my chair. I would draw up to my chair. I had an extraordinary amount of great services. I could fly all over the world, and it was fantastic after covid. It's like they took that book that had how to how to accommodate people with disabilities and threw it in the grinder.

Stuart Murray  51:03  
Yeah, you know. So first and foremost, I bet Max, if you reached out through your foundation to David Grohl at Foo Fighters, I bet you he would a respond to you. Maybe I have already, I don't know. No, I haven't yet. Okay, but I'm just saying he's the kind of person that would would understand what you're saying. I believe. And then just coming back to this whole thing with the airlines. You know, I've done a couple of other podcasts with with folks in chairs, and one of them, particularly from Winnipeg, said he's surprised that every time he travels with the airlines, they basically ruined his chair. They always give him a substitute. But you're saying that's not my chair. My chair is part of my body. But as he was making the point in the podcast is, Air Canada has been able to figure out how to how to transport horses safely, but they haven't been able to figure out how to do that for humans. And so again, why after covid, would they throw that out Max What's that all about? And you're

Max Brault  51:56  
using my incentives line, by the way, and she has a great line saying, we know how to ship champion horses all over the world and in the country, but we can't do it for people with disabilities. The reality is, is that I don't know one person explained to me it's a cost expenditure. We only represent a percentage of the population that uses their services, so we don't make money for them. We don't, we don't generate income for them. And the last time I sat on the Hill on this particular topic, I wanted to strictly, I wanted to hit them hard in between the eyes, right? And I fundamentally believe that my rights to access the airlines is a human rights issue. It's and to the point that it's a human right violation. Human rights violation if they destroy my equipment. Because when I go on to the airlines, when I want so, when I go on to an Air Canada or West jet, and I give them my wheelchair, because I give them my wheelchair, right, it is a contract that I'm making with them that my wheelchair would be in the same condition at the other place, because it's my legs. Sure it is wherever I go. If I don't have that functioning, I am in trouble because I don't know what to do. That's a human rights violation. And I fundamentally believe that that if we turn it into a violation of human rights, boy, oh, boy, are they airlines in a flip really quickly, you know? And because all of a sudden, it's now a massive issue across the board. Oh, it's no longer just give that guy $20,000 and shut them up.

Stuart Murray  53:41  
Yeah, yeah. And, you know what, I max I hope that that that happens, because I do think that, you know, we get into a lot of box checking about we've done this, we've done that. We're looking at getting this done. We're having a meeting about this. We're having a meeting about that. You know, we're talking about getting things done by a certain time frame. And, you know, there's really no sort of accountability and and, you know, the the notion that people with disabilities should not have the same experience of those with with ability is is preposterous. And if it comes down to finances, somebody should have the cojones to stand up and say, That's the reason. Because if they did that, they would be booed and hissed as they should be, because that's basically, again, I come back to this comment. Are you talking about, you know, the financial impact or the human impact? And how is it that financial impact Trumps human impact?

Max Brault  54:30  
Now here's a really, really cool story about this, right? When the Act came into being, something magical happened. All the years that I've been working with people with disabilities. Prior to the act, I was working with the number of 4% I will go and talk to people like you saying the community represented 4% of the population, right? Well, when the Act came into play, Stats Canada finally woke up and said, Let's take a new look at the population with the. Disabilities. And he came back and it said that 27% of the Canadian population now has self identified as having a disability. Wow. Now let's put this in a really interesting point of view. What is the average percentage that a federal party needs to achieve majority in this country, 42% right? Think about that. Yeah, yeah. And And 27% of Canadians self identify with people with disabilities. And yet, when I look at all the stuff they're doing for people with disabilities, doesn't, doesn't represent 27% of the taxes.

Stuart Murray  55:43  
Yeah, no, listen, Max, I love that. And you know, maybe you have another career in you before, before you, you call it a wonderful journey, a life journey. Max, bro, you know, I just can't. Thank you enough, author of the race to the starting line, your your your ability to write, your ability to advocate, to educate, to be passionate, and to allow people to to to learn from you, as I have done during this podcast, I want to just say thank you so much for taking time to join me on humans, on rights, and I hope at some time our paths will cross personally, because I'd love to be able to see you and take a selfie, especially with that awesome bow tie that you're wearing.

Max Brault  56:27  
Thank you for having me. I'm bored. I'm always around anytime you want to talk.

Matt Cundill  56:32  
Thanks for listening to humans on rights. A transcript of this episode is available by clicking the link in the show notes of this episode. Humans on rights is recorded and hosted by Stuart Murray, social media marketing by Buffy Davey, music by Doug Edmond. For more, go to human rights hub.ca 

Tara Sands  56:52  
produced and distributed by the sound off media company.