The Agenda with Steve Paikin (Audio) - The Fight to Enshrine Disability Rights

Episode Date: September 17, 2024

David Lepofsky joins The Agenda to talk about his own journey with disability and his work "Swimming Up Niagara Falls!" about the fight to include disability rights in the Canadian Charter of Rights and Freedoms.See omnystudio.com/listener for privacy information.

Those of you who have followed the struggle for improved rights for Ontarians with disabilities will surely know the name David Lepofsky. For more than four decades, David has been a leading figure in that struggle, prodding and sometimes shaming politicians to do more, and educating the public on why helping people with disabilities actually helps us all. He has written a memoir. It's called Swimming Up Niagara Falls, the battle to get disability rights added to the Canadian Charter of Rights and Freedoms, which was David's prime mission 40 years ago. And unlike every other author who comes on this program, David is making his book available online for free. And here's David Lepofsky. It's great to see you again. It's great to be talking to you again and in person. In person, which is beautiful because of course during COVID we chatted quite a bit but always

on Skype so this is much better. Thank you for coming in. David, before we talk about that fight for charter rights, I want to go back because when I read this book, you know, I've known you a long time but I learned a lot about your background I did not know and I want to start with that. You are blind today but you were not born blind. When did you start to lose your sight? When I was born, I had no eyesight in my right eye at all. My left eye had near vision.

So I could ride a bike during the day. I wasn't supposed to at night. Of course, I did anyway. I could read a book if I held it up to my nose, about two inches away. At your distance, if this room is lit well enough, I'd know who you were. If you were, say, 15 feet away, I'd know you were there.

I wouldn't know who you were. Starting around age partway through between age 13 and 14, my vision slowly, in my good eye, slowly started dropping. At the time we didn't know why, and it gradually dropped till it was pretty much all gone by the time I was 20 or 21. So take us back to those teenage years, which are of course difficult enough

for people who don't have disabilities. You know that the day will come as a teenager when you will not be able to see anymore. How depressing was that for you to go through? The actual truth at the time was we didn't know if it would stop, that it might park itself on a particular point in time and not get worse any longer.

So I kind of dealt with the day to day of adjusting gradually as vision got worse. It wasn't the kind of thing where you wake up one morning, you know, at age 15 and suddenly you can't do something. It was very gradual. So I was slowly learning the skills I needed to be able to function without reading visually, without being able to find my way around visually, and so on. And I, you know, if I thought about it I

just thought let's get through what I'm getting through right now. And oddly the the interesting thing was that my mother, who passed away 11 years ago, was a huge cause of my success. She was trying to put on a brave face so I wouldn't get worried. And I was trying to put on a brave face so she wouldn't get worried. And the effect of it was we both got each other through it.

This is a love letter in many ways to her, this book. She is really the hero, I mean, the biggest hero of your story, don't you agree? Well one of the things I learned from it and I've shared since is how parents of kids with disabilities are the pivotal person both to get you to move forward and not let anything hold you back, and also to tackle barriers for you until you're ready, old enough, and ready to tackle them yourself.

Let me pluck a quote from the book here where you say, I had years to gradually adjust to vision loss. By the time my last bit of eyesight vanished, I was fully armed with all the adaptive skills I needed to live independently without eyesight. Tell us about those adaptive skills like what? So by then we didn't have talking computers yet but I was using audiobooks to read, I was typing on a typewriter, I was dictating notes onto what we then used cassette recorders to record school notes and And I had learned white cane skills.

One of the most important skills when you first lose your eyesight is being able to get around safely, knowing where you are and being able to get around. It's called orientation on mobility. Well, I had gotten white cane lessons. In fact, oddly, the person who gave me that training decided to give me training as if I was totally blind,

even though back then I was still riding a bike. At the time it made no sense. In retrospect it actually was a great assistance. All right. Let's go back to the early 1980s. Pierre Elliott Trudeau was the Prime Minister of the country. He introduces a charter of rights and freedoms that banned discrimination based on race, national or ethnic origin, color, religion, age or sex, but not disability. Now when you learned disability would not be included in the

Charter, what did you think? Well I was livid. Sadly I was not surprised because that was just the world we were in legally and politically but I was livid and I thought this is this is this is appalling and this is not just an incident little incident a little policy initiative it was the top headline story of the day was Trudeau's reforming the Constitution, patriotic and adding a Charter of Rights. So bang in the middle of the lead story, night after night, was an initiative that we were going to be left out of. And it was getting no attention.

Well they did hold public hearings on Parliament Hill about this and here is how you in the book describe that process. Again, Sheldon, this graphic if you would. How did an exhausted, untested, inexperienced, nervous, blind, 23-year-old law student find himself in front of an august committee of senators and members of parliament who were holding nationally televised public hearings in December 1980?

OK, that's a good question. What's the answer? The answer is just a chain of events that you couldn't possibly expect in advance. I went to the, I decided I needed a platform to do advocacy. Now I don't want to in any way leave the audience with the impression I was the only one or I was the most important one. There were a number of us taking action on this issue within the disability community,

but we didn't know who each other was or what we were doing. We didn't have an internet back then or other ways to connect up. For my part, I decided I needed a soapbox. So I happened to be on the provincial board of the Canadian National Institute for the Blind. So I went to them and I said, can I be your constitutional spokesperson? And after a series of efforts internally, which wasn't easy, I got them to say yes. Then having learned that the public hearings were going on, I got CNIB to write Ottawa

and ask for a slot on the hearings. Now these hearings were being televised, they were getting a lot of attention, there were a lot of people who wanted to appear, and there was very little time. So our chances of getting an opportunity were kind of zero. It was zero enough that I wasn't planning for the eventuality in a systematic way. I wasn't doing any research. And then one day, I get the phone call at my house,

at my parents' house, while I'm waiting to eat dinner from the House of Commons, asking if they were reaching the CNIB, they were reaching my mom and dad's kitchen, and inviting us to make a presentation 36 hours later. Go, go, go. Interestingly enough, and again, this is something I learned new about you that I didn't know before, there is a passage in the Bible that motivated, I guess is fair to say, a lot of your work.

It's from Leviticus chapter 19 and it says, do not curse a deaf person or place an obstacle in front of a blind person. Now what have you read into that passage that perhaps others have not? Well, the reason I knew that passage is because I'm Jewish. When I was 13 I had my Bar Mitzvah. I was called to read in Hebrew in front of my congregation from the Torah. And that was part of the passage I read, which at the time when I'm 13, I was low vision. I had no idea I was going to be blind later. I had no idea I was going to do advocacy on this.

But it actually defined everything I've done since. Because what it really means is do not create barriers that impede people with disabilities. And equality is all about achieving a barrier-free society in which people with disabilities can fully participate. Because the biggest challenge we face is not our disabilities, it's the barriers that impede us from participating because of those disabilities. Get rid of the barriers and we have a full opportunity to equally participate based on our merit. The politicians on Parliament Hill debate the charter. It is front page news all over the place. And then somebody, a conservative MP, actually proposes an amendment to put disability rights into the charter.

Who was that conservative MP? That was David Crombie, former mayor of Toronto. Now, if I was doing what I do now as a volunteer disability rights advocate, I would have been on the phone to members of the committee after the hearings and doing what I could to try to persuade them and their staff. I'd never spoken to him other than as one of the members of the committee. And we didn't know till the day of that it was actually going to pass.

And again, I was just one of, there were three major disability organizations. The organization now known as Council of Canadians with Disabilities, the organization now known as Inclusion Canada, they had other names back then, had presented. And a number of people were doing advocacy efforts on Parliament Hill and in their parts of the country. They didn't know what I was doing, I didn't know what they were doing.

In fact, I doubt any of us knew we were doing anything. Okay, but let me jump in here because the guy you actually had to convince to do this was Jean Chrétien, who was the Minister of Justice and Attorney General of Canada and it was his file, if you like, to get this through. How did you manage to change his mind to put disability rights into the charter? The truth be known, we still don't know. I've got a whole chapter in the memoir where I try to piece together circumstantial evidence to figure it out, but we don't really know. What I've basically been able to figure out is the real opposition all along was coming

from within the public service. The public service I think had been warning the government of you do this it's going to create all these obligations and the government was trying to get the nine the eight holdout provinces that had not agreed to the patrician of the Constitution to actually agree to it. And I gather there was some reluctance to add new rights if they already were facing that opposition.

But in the end, I think what happened was Pierre Trudeau was trying to appeal to the public over the heads of the opposing political, pardon me, provinces. And this issue had enough appeal on its own that it seemed to cause them to override the requests of their politicians, of the public service. In preparing the memoir, I found out so much

I didn't know back then. I was able to read all the passages of the work of the parliamentary committee that was holding hearings. And what I found out from reading it is that the various presentations on disability, not just mine, but the others as well, landed enough of an impact that it led opposition members, and even some government members,

to question the government, to question credit genit, and put pressure of their own on to get the disability amendment to the charter passed. Here was the next interesting thing about that. Despite the fact that you successfully, you meaning you plural, your groups, managed to get disability rights put into the charter of rights where they heretofore had not yet existed, it didn't get that much media attention at the time. put into the Charter of Rights where they heretofore had not yet existed. It didn't get that much media attention at the time.

And here's what you write in the book, Sheldon, if you would. The absence of disability in the news cycle reflects a failure of Ontario and Canada's major media outlets. The reality is that people with disabilities regularly face discrimination, not just in attitudes but in the physical and digital environments in which businesses and government operate. People with disabilities are over one-fifth of the population and reflect a larger population than many other equity deserving groups whose rightful challenges are far more prominent in news cycles. And I guess the question is

why is it that way? I should be asking you. You're the journalist. Well, I'd like to say, at least I hope, that we cover these issues here pretty well. Well, you and your program lead on this. And I wish the rest of the media would follow more. Now, some of our audience watching today may recognize me because I've been periodically on the media.

But what they might not know is that for each time there's coverage of a story that we or others in the disability community bring forward that gets coverage, there's about 100 or more that don't, that we try to get coverage on. And it's a real uphill battle. It was worse in 1980, no question. We're doing better with the media now.

But it is still way harder than it should be given the newsworthy ingredients of the barriers that people with disabilities face, kids with disabilities in school, in adults with disabilities, everybody in the health care system, and so on. I want to push you on that a little more because, you know, if you do the math, there are those who are currently disabled, there are those of us who are going to be disabled someday,

and there are those of us who know somebody who has a disability. I mean, if you add it up, that's darn near the whole population. So why don't these issues get more attention? Part of the advocacy that I and those in my coalition have been involved in for years is trying to drive the message home, not only to politicians, but the media, that people with disabilities are the weirdest minority of all because we are the minority of everyone.

Everyone has a disability now, gets one later, or has someone, as you said, who's near and dear to them who has a disability. And the barriers that hurt us hurt everyone. So it's, you know, I fought a battle starting 30 years ago this month to get the Toronto Transit Commission to audibly announce all subway stops and later bus and streetcar stops.

Nobody could believe that it would take a 13-year battle, including two lawsuits, to win that because it's so obvious that it should be done. But that's what happened. The thing that's significant and most of the feedback I've gotten from the public about winning it is from sighted people who welcome those announcements, who are greater in number than the blind people

who desperately depend on those announcements, because everybody likes it. What's done to help us, helps and accommodate us ultimately benefits everyone. But this was, if we were fighting this battle today, I suspect we would have gotten a lot more media coverage than we did in 1980. But I still know that we would not get as much as the story

warrants. How do you walk this very challenging tightrope of, on the one hand, wanting to pressure and or shame or embarrass politicians to do more and yet not alienate them at the same time? Sometimes it's impossible. Part of it is being nonpartisan. We, you know, I never endorse any parties and the coalition that I happen to serve, the Accessibility for Ontarians with Disabilities Act Alliance,, I lead it. We don't endorse any parties.

We will criticize when something is done poorly or not done at all that we need. But the other two things we will do and do do is compliment and think when things are done well now. Sometimes that doesn't get as much media attention, unfortunately. But the other thing we do is we always come forward with constructive suggestions. It's not good enough to say this, you

know, it's unacceptable to have a third of a million students in our publicly funded school system facing so many unfair, inexcusable, eminently preventable barriers to their effective education. You need to come forward with an agenda on how to fix it and how to fix it realistically and practically in a society that doesn't have unlimited funds for this. If the thank-yous don't get as much attention as they ought to, maybe we should use this opportunity for you to tell us who over the years, which politicians do you think have done the most to secure and advance disability rights? I'm not sure I could just name somebody sort of categorically and that quickly but I can tell you from the

the story that I cover in the memoir that a couple were particularly critical the opposition members David Cromby who brought the motion for the Tories, Sven Robinson one of the opposition members for the NDP who just kept asking questions of Jean Chrétien and others. Chrétien himself, though I don't know how much he actually had to do with the decision, clearly had to be part of the decision. But a key player was David Smith. He's now deceased. He at the time was a new backbench member of the Liberal Caucus in Ottawa.

He had headed a parliamentary committee to hold hearings on the needs of people with disabilities that we all thought was probably a little more for show than action. Not on his part, but he took it on himself to internally lobby within his own political party behind closed doors. And he, if we hadn't had him doing that, I don't know if we would have succeeded. True to your nonpartisan nature, you managed to mention a liberal, two liberals actually, and a Democrat and a conservative. So well done.

There you go. I want to ask you now, with the benefit of more than four decades of case law in the rear view mirror, has the inclusion of disability rights in the Charter of Rights and Freedoms actually made a difference? The answer is yes, but not enough. There is no question that we are better off now than we were then,

and that either cases or government action inspired by the fear of litigation has made a difference. The problem we have right now is our legal profession isn't sufficiently equipped to represent and effectively serve people with disabilities because our law schools do a good job of training law students to be lawyers, but principally for clients without disabilities. That's not by design, but it's by result.

That's why I'm now at the University of Western Ontario and at the University of Ottawa's law schools trying to add content to their courses in law school so that lawyers, future lawyers are better equipped to deal with this. The other thing is there are two other huge impacts that the Charter's Equality Guarantee has achieved for us. The first is we now have generations of people with disabilities who've grown up as seeing themselves as rights holders. They've got rights in our Constitution that are explicit.

And that is a huge difference from the world in which I grew up and during which I lost my eyesight. And the other thing is that the Charter of Rights Guarantee of Equality to people with disabilities was a key driving force that led five at least provinces of Canada and the federal government to pass accessibility legislation Ontario, Manitoba, Saskatchewan, British Columbia, and New foundland, and the federal government in 2019 have all passed accessibility legislation in an effort

to more effectively implement the rights that the charter gives people with disabilities, because otherwise we've got to fight barriers one at a time, and that's quite a burden. If I recall, the Ontario legislature unanimously passed the effort designed to make Ontario barrier free by what was the date? 2025, just a few months from now. Okay, how are we doing in terms of meeting that deadline? I had the privilege of leading the campaign for 10 years to get that law passed. I've been leading the campaign, a volunteer effort, to get the Ontario government to effectively implement it. Bottom line, we've made some

progress. Nowhere near enough, we are not going to be achieve the unanimous deadline that the legislature set. Nowhere near close. The problem we have right now is that the current government has not got any plan in place that would either achieve that goal or get us as close to that goal as possible. We've been asking for it since the day they took office. Have you ever met Premier Doug Ford? He has refused to ever meet us. We've asked, I've written to ask multiple times. He's the only Premier in the past two decades who's refused to ever even meet.

How about a minister responsible for disability issues in his cabinet? Well, I have, I've met with every minister before this. I had met with the current minister who's been in since they took office in 2018. Met several times early on. Now, other than one happening to bump into each other at an event at Queen's Park, we've asked for meetings, we've had none in the past over two years, and his office, the minister's office, doesn't even respond to our inquiries. Who's the minister? Raymond Cho. Raymond Cho is 88 year old, I think

he's the oldest MPP ever, good friend of Premier Ford's has been in the cabinet as you point out since nine, 2018. Why do you think he won't meet with you? Person to ask is Raymond Cho or Doug Ford. I mean we've asked them they don't answer or we just get told they're too busy. If you could have that meeting with them what would you tell them? I'd come in and say, here's why. We're the minority of everyone, and no politician can ignore the minority of everyone,

either in how they govern or in how they face the voters. I'd say there's a whole lot of things you could do easily to speed things up. And moreover, you've got to stop the practice of using public money to create new disability barriers because they've been doing that. This government's done it. The previous governments have done it. We've called them to account on this.

And I would imagine everybody watching this interview is going to think, I don't want my tax dollars used to create new disability barriers, but they're doing it as we speak. This is the construction of subway stations, of a lot of public spaces, right? Yeah, public infrastructure or initiatives in schools that are not effectively designed. Now, I don't want to leave the impression

they're not doing anything for people with disabilities, but I can point out clear documented instances where they've used public money to create programs or build new infrastructure that lack proper accessibility for people with disabilities. David, we've got 30 seconds left, and I couldn't help but notice when reading the book that Star Trek gets a lot of references in your book.

So I want to finish on that. And I suspect those who know Star Trek, particularly the next generation, will infer that the blind engineer, Jodie LaForge, must be your favorite character because, of course, you share that one important characteristic in common. Is that true?

No, I grew up watching the original series. Mr. Spock has been my inspiration for a long time. So no props for LeVar Burton, eh? Well, I certainly like the character, but I want our viewers to also know that the book is available for free. If you Google swimming up Niagara Falls. You'll find a free download of it available. Working on getting it available as a free EPUB and a free audiobook. And if we can find a printer in Canada that will do print on demand, and again I don't want to get any Adima for this,

that will provide it at cost or that will provide it with at a reasonable price. I want to make that available. So far the only print-on-demand options we found are in the states and the shipping charges are more than I think people should have to have to pay. If that's what we have to do, that's what we'll do. But I want to find something in the country. For anybody watching or listening, the gauntlet has been thrown down. David, shall I simply say, live long and prosper, and we hope to see you again here soon.

Peace and long life. Well done.