An Interview with Chris Stark and Marie Laporte-Stark

Oral history interview with Chris and Marie Stark, 26 April 2016

Marie Laporte Stark and Chris Stark, Ottawa ON, April 2016

Chris and Marie Stark with guide dogs, 13 April 2016

 

 

The following is an oral history interview with Chris Stark and Marie Laporte Stark. They were interviewed for the project on April 26, 2016 at their home in Kanata, Ontario. Within the interview, they speak of their many decades of activism, as well as the various positions they have held within the federal government. Each speak of their involvement with various initiatives, including the talking ATM at the Royal Bank of Canada and their experiences in navigating the Human Rights Commission of Canada. Please find a full transcription of this interview below. You can also access the transcription through the Items menu, listed to the left of the screen.

Above is a photograph of the Starks on the day of the interview, along with their two beloved guide dogs. Thanks to them again for graciously opening their home up to the interviewer, Beth Robertson, and telling their story. 

26 April 2016, Kanata, Stittsville, Ontario

Interviewer: Beth Robertson

Interviewee  Chris Stark and Marie Laporte Stark

Beth Robertson:

It’s April 26 2016 - my name is Beth Robertson.  I'm from Carleton University's Disability Research Group. I'm here with Chris and Marie Stark at their residence in Kanata, Stittsville.  I'm going to begin with a standard question: are you a person with disabilities?

Chris Stark:

Yeah I'm a person who's blind and I do see light and colors; I saw a lot better in my younger age, gradually down to the point where I don't even see your features now. Marie...

Marie Stark: 

Well, pretty well the same I've been blind since birth. I went to the School for the Blind in Montreal. I have gone to university in Ottawa and now I've had pretty well the same amount of sight all my life which is, I think they used to say half of 1%, so I have light perception, and I see some colors and I see shapes from very close up.

Chris:

I think that the point is that we both use what we have and one of the funny things is she can sometimes read small print that I can't even see…

Marie:

…. but only for a few seconds because I can't focus I’ve got nystagmus - which is when your eye moves all the time - so if we want to know what the piece of mail is sometimes I'll try to read, you know, the logo or something and see for a few seconds and that's about it.

Chris:

And now we just normally scan it with a talking computer and find out what it is, whereas years ago you had to get somebody to read it.

Beth:

Can you please tell me about yourself?

Chris:

Women first [laughs] but I'll speak I guess just to be obnoxious. I went to the Halifax School for the Blind. When I went to the school, I got a good classical type of an education except that the focus was on using my residual vision. I use things like moon print, writing guide, all those kinds of things, but never learned Braille.  And I went to a public high school for grade 12. And then after that I went to St. Mary's University in Halifax and I took two degrees but I used readers and used tape recorders. But in my day you had to pay for your own education so I had some mentors, I guess is that the word today, who helped me and one of them got me jobs so I worked my way through university going to school during the day, and sleep from 4 to 12 and worked the night shift at the residents office in the residence manager's office. I worked my way through University. Then I think my first job was with CNIB and eventually became the provincial director for New Brunswick and then went from that to the Government of Canada and worked with Transport Canada in energy management. How I was ever qualified for that I'm not sure, but it gave me, I think some advantage because I had good communication skills and what they wanted was to communicate what the engineers were doing. 

But I had a chance to travel Canada all the way up above the Arctic Circle at a time when blind people weren't doing that kind of thing. I went all on my own. And one of the things I remember is when I went to Resolute Bay the guy told me “well tonight you're going to have a real treat - you're going to sleep in the bed that Queen Elizabeth and her husband slept enjoying their honeymoon.” And I was all by myself so I couldn't figure out why that mattered at all.. but anyway.. That and then I went from there to the Canadian Transportation Agency and worked on accessible transportation, putting in place rules, regulations and things. So that, for example, airlines when they accept your wheelchair they have to give it back to you in the condition it was given to them in, and that if they broke it, they had to fix it, space for service animals, accepting people's self-determination of their needs and help to and from aircraft ,all those kind of good things.

And in 2009 I kind of got quite sick, went through a liver transplant, and then retired and now I am enjoying retirement so that's the end of my tombstone. Marie…

Marie:

I went to the School for the Blind in Montreal, so I was born in Saint-Hyacinthe, Quebec. I am Francophone. I went to the University of Ottawa where I majored in psychology, and was taking my studies in French.  I learned English at my first job, which was with CNIB / Canadian National Institute for the Blind as a rehabilitation teacher or counsellor. I learned Braille mainly, and when we got married we moved to New Brunswick and my two children were born in New Brunswick - a boy and a girl - and we now have three grandchildren.

I worked for different jobs with the federal government from 1987 to when I retired in 2012, including Canada Mortgage and Housing, Citizenship and Immigration Canada, and Human Resources Development. And I spent 10 years or so at the Public Service Commission and I was at the end a senior advisor in policy…

Chris:

.. because of her employment with Immigration Canada we managed to go on our own to Israel, which was one of the famous trips. We liked to in those days travel by ourselves. In government I used to say I was the highest-paid “illiterate” because as I grew older I could not read and write in print at all.

I professionally was involved in the development of technology such as: lifts to help people who are using wheelchairs to enter aircraft when there weren't boarding bridges, on board island wheelchairs. All that kind of stuff, but it wasn't from a technical perspective, it was from users’ need as a regulator. But in our advocacy, I would say that we've been involved in many things like the ATM - the automated teller machine - that came about as a result of the complaint before the Canadian Human Rights Commission that started in 1991 and took four years before the Royal Bank realized that it was better to do it than to suffer the moral and indignity of public exposure. Because they knew they were going to lose, but also because the management that took the file over realized it was the right thing to do.  But in the agreement some of the things that we put in it were the important things. 

We never in all our advocacy thought that we should tell people how to solve the problem: we felt that it was important to set the parameters, so in that case, have focus groups like they did for any other products they develop, do R&D, do user testing…

Marie:

.. to develop standards…

 Chris:

..That's why it took a while to get it done, but I can remember them taking us down to their test labs in Toronto on Front Street and going up and testing this equipment with a whole bunch of other blind people.   I think that was the first time, at least in my memory, that a product for the blind was tested using, not my opinion or Marie's opinion, or one or two blind people's opinion, but a cross-section of abilities and a cross-section of needs. So that was one of the important aspects of that whole exercise that people who are blind - their diversity had to be incorporated in what the Royal Bank developed.

And not only blind people. They took the same approach for people who use wheelchairs and most of that technology has stood the test of time.  They were the first but it's gone throughout Canada, most Canadian charter banks, it's across the United States. The technology has been updated, the design. Now, for example, in the first one they used human voices and they hired a company to do that. Now it's all automated: we don't need human voices to read to us we need to get the messages. That's one of the big changes that that have happened.

But now I can walk up to a machine, plug in an earphone in and use it at any Chartered Bank in Canada. And that's happened in probably the last 20 years. And often you'll get somebody saying, ‘do you know sir the machine isn't working?’ because I've hit three and blanked the screen.  I don't need this screen, and I don't want anybody looking over my back. They don't even realize that I'm using it in a different way.  The important aspects of that settlement were that design component be integrated into existing machines rather than a “special machine for the blind,” which is something we fight against almost constantly. We want integration and mainstream solutions whenever possible. And some of the guidelines are: the simpler solution, the lower the cost the solution, the more mainstream it is, the more likely we are to use it. 

So now today you see bills with tactile markings on the back of them that tell you whether it's a $5, $10 or $20. And there's three little, not braille, but cells on the back of that that tells me it is a $20.  So now, not only can we use the bank's machine, but we know what money we're getting out of the bank machine. However, in the United States when we travel down there, we have the problem that in the United States their bills do not have tactile markings and a one looks like a fifty.  Now we have a thing on our smartphone called “Darwin wallet”. We just aim it at the bill and it takes a picture and it says “twenty, US front.”  Those are all allied technologies to that. But, you know, we've had to go back to the banks over things like statements we can read, over things like websites. You know, you’d think after one go around they'd learn, but it's almost as if there is a natural reluctance to do these things because either it's for the blind or ‘how many blind people are there’  - and I used to answer that one by saying, “I don't care how many blind people in the world are. I need my needs nominated” and if there's only me that's fine long as it doesn't bankrupt you that's fine so it was another principle.

But always as participants and we've always emphasized the importance of user testing: don't ask me what the blind need, ask a lot of blind people.  Too often things have been developed that are very expensive and have a very limited life because they are so limited in use and so costly to produce.  When the average statistics of people who are blind: most blind people are unemployed, most blind people are living below the poverty line, most blind people have had substandard education, and they're not going to be able to afford $8,000 for a device (like a refreshable Braille keyboard or something else).

Marie:

One of the areas that really needs improvement is the area of on-screen programming for television and the like, because right now we can't use PVR's and all these gadgets, the set-top boxes and on-screen programming is not made to work with them yet.  We've pushed that since the beginning of 2000… but it takes so long to get things done because of the way our system is structured. You fall further behind with technology that would be very useful.

Chris:

But I think with the Apple and the Galaxy and similar things you're seeing them hit the marketplace accessible.

Marie:

Yeah, and that's the way you have to go.

Chris:

 And in our view and all the things we've advocated for it has to benefit us, but has to benefit other people too.  Everybody thinks that people who are blind really want to see, so we've had sonar and we've had... now you've got cameras that can interpret what's around you, and recognize faces.

Marie:

 We'd be robots if we’d use everything…

Chris:

We’d be like the tin man, but some people may, but the majority of people who are blind just want to get the information they need.

Marie:

Three years ago, [the idea] that I would use mobile very much, I would have said, ‘ah, no way’. And now it follows me everywhere. Even finally the bank has made their app accessible, more accessible. Before we weren't able to use it at all, but the last upgrade, it's much better. Now I can do some of the banking on the phone. But it took two years, we've been telling them, if not more. And I go to get the next upgrade, I get the notice on the phone there was an upgrade, and it still wasn't accessible. 

Chris:

We can't use the on-screen programming, we can't use... now they have added in recent years a thing called this ‘descriptive video’ where they describe the movies and that we've pushed for, and some programs like Coronation Street, the Murdoch Mysteries, those have all come about because of advocacy. If you can see it and we've got the right to know it. 

The technology we use today is not the technology we used when we left school (when I used to romp around the federal government saying ‘I'm the highest-paid illiterate in the world’), but now I get my literacy another way.

We hope that in the future things will become more mainstream as they come on the market. We don't understand why new things are not made accessible to begin with and if they're not, the retrofit becomes very much more expensive.

Marie:

There's one thing why we're so surprised about the apps with the Royal Bank, for example, how long it took. Because we have been working with them, they knew that there was new services they were supposed to be made accessible from the start.

Chris:

They agreed to that in a legal agreement.  If we had accepted society's role of our existence in life, we'd be living on a pension or ODSP or… and not having a quality of life that was satisfying for us. We had that first make it for ourselves, earn a living, we wanted to have a family, all the normal things..

Marie:

I remember even when going to university, I remember when I wanted to learn typing and stop learning the piano, because you had to choose what I was going to and learn but I'd like to go to university.  My goodness, they were all appalled. When I got to University of Ottawa there was only me and another girl that were blind.  There were a few men but we're only two blind ladies, and there was no student with the disability centers.  You had to make your own way, you had to get your teacher to give you our own tests. I remember writing essays myself on a clunky typewriter, you know, and making mistakes. And then I’d get a friend to read the page and she say, ‘oh, you have a typo blah blah blah’ then have to start the page all over again, because you didn't have the autocorrect. So you had to make your own way in the early 1970s.  You didn't have the support that is available nowadays.

Chris:

And I think that experience growing up at least for both of us is why we hit many of the issues we did in the way we did. That we weren't willing to accept the fact that we couldn't get access to money when we wanted to.  We couldn’t, so we went after the Royal and it took years.

Marie:

Actually, this started just wanting to have access to communications. The complaint to the Royal Bank was mainly about having access to our bank statements and their publications. We had learned that that you could pay your mortgage faster every two weeks and we didn't know about it.  And then ‘oh there's our flyer on that..”

Chris:

Well we actually Marie is quite right the ATM was a very small part of that settlement … and it became the thing that everybody has taken notice of. But for us, the more important things were knowing about the products and services and knowing what was coming out of your bank account.  You've got to take charge your life. You've got to be willing to take risks. You've got to be willing to know when to accept help and when not to accept help and those are difficult things to learn…

Marie:

And they change as you get older too. Some things that we'd accept help for now, we wouldn’t have earlier in our lives I suppose…

Chris:

We want to do as much as we can for ourselves, but we got to know when it's not safe to do it or when we can't do it.

Beth:

Can you tell me about the first time you ever used a technological aid or an assistive technology?

Marie:

I suppose I use Brailler.  [Chris: Perkins Brailer..]  No, my God, we weren't allowed to use a Perkins until I was -  I don't know if it was in high school or whatever, but quite further. We used the Slate and Stylus, that's how we learned Braille when I went to the school in grade one at five years old. And we were taught Braille right away. 

I suppose that's the first piece of, we’d think you'd call it technology in those days. [Chris: in those days…] you had to write each little dot one after the other with the slate and stylus. You’d learn to write the wrong way around, if you know what I mean. So you're going to write from right to left, and then you turn that thing over and the page over and you read from left to right.

So that's a very difficult concept for young children. And also when you try to teach Braille to adults. And that's why, now, they teach a lot with the Braille writers, you know braillers or Perkins Braillers, Braille writers are even given to young kids at school when they don't seem to be learning. Unfortunately those are little slates are very useful in some instances.

If you have a little card, you just want to take somebody's name, you know. Sometimes it's just as fast as getting your mobile out. So absolutely, my first experience with technology and then probably just regular tape recorders as I went to university. Then you get into computers and you know braillers. As I said the Perkins Brailler we learned as well when I was…

Chris:

..I don't think we started using computers until the late eighties, early nineties.. with disks…

Marie:

And the talking book machines at that time - Chris was starting to talk about this earlier, you know, they were a lot bigger and you had the four tracks on them and…

Chris:

..they were all specialty items - special.  Now these are just mp3 files anybody can download..

Marie:

..You download them from audible.com or from the library or whatever…

Chris:

Now for me I think my first technology would be large print. And as my sight got worse, the print got bigger. That's how they tried to culminate it in school: first the small print then up to maybe eighteen, thirty six point.  By then it became unmanageable, so then you had to rely on memory.

Marie:

..And why they didn’t teach you braille, that was hard to believe..

Chris:

Well because of the problem with print, by grade 4, they put me in a slow learners class. But by grade 7 I developed ways of getting around it and coping and with the help of a teacher. She refused to retire until a bunch of her students were taken out of the auxiliary class and put in the regular school. I suppose my second technology would be a magnifying glass - technologies that really didn't suit and meet my needs. I would say that the most effective technology for me were readers - readers or people who would read stuff to me, so they were human technology. Because in those days - and I'm sure Maria would share - even as late as now, getting textbooks is a real hassle for students. We could get textbooks about the time that the classes were finished, and the libraries didn't have them, the CNIB didn't have them.  I remember in Halifax, the late 60s, we said, “look, this isn't hard you know.” So we got some federal government money and we went to the professors of students who were going to their classes next term in June. So we’d say, “what books are you going to use next year”?  They knew, and so we went out and we brailled a bunch of them.

Marie:

Oh, there would be copyright … 

Chris:

Oh, yeah, I’m sure there were, but we didn’t care.. And then people in the traditional libraries were horrified.

Marie:

I remember my one of my first jobs at Canada Mortgage, one of the vice presidents, when we asked for a reader for me as an accommodation, she said “so I don't want to look like I’m hiring two people when I'm hiring one.” And then, you know, I had to start talking about the Human Rights Commission, and we didn't have to go that far, but then still, at first the reaction was that.

Chris:

Yeah, so the way you get around that is they were our contractors [Marie: the same as an attendant for a person who’s a wheelchair.]

Chris:

They were really almost the forerunners of attendants, because in the 70s / 80s, there weren't that many people who use wheelchairs working.  Whether the horse came before the cart or the carts before the horse, the concept is the same - as an interpreter, as a reader, as an attendant.  Oh and you're right, you get good, bad or indifferent.

I used to always go to the radio stations and get my own.  I used to get radio announcers who enjoyed coming out in the evening and reading The Merchant of Venice -  you know some guy who in the morning he was spinning the top 40 on the breakfast show and would come and read to me the Merchant of Venice.  You know, but they have the voice training to do it, and I remembered that stuff better because of the good reader.

Marie:  

So but at work we had mainly university students, with posters at universities and hired students.

Chris:

Hired students, mainly for their ability to use the technology that was inaccessible to us, and read things to us like files, and print. [Marie: Because there was a lot more print in those days.  When we first started to work there wasn't the use of net, computer networks, and getting things turned around in the same day. You had a month to send something back most of the time, when today you have two days…]

Chris:

Sending my reader down to the library to research something. Nowadays I just pick up, say “Google what is the regulation on carriage of monkeys on aircraft.”  Now Google, tell me? Now Google is a smart critter. Now I'm part of a thing called the ‘broadcasting accessibility fund’. I’m a board member of it.  And what it is, it's monies the CRTC gave the disability community as a result of Bell mergers and all that kind of stuff, to fund research and development into technologies for people with disabilities in the broadcasting area.  That's now something I do and we are having projects…

Marie:

… They have a certain amount of money that… every year they sponsor or fund projects to improve broadcasting services. Like we were saying, we still can’t read the units on screen programming and several other features. Hopefully that will help towards that, but that's one way to influence it by participating on boards or committees. Although, we've gone to so many meetings, that we hate meetings. We don't participate on as many groups as a lot of blind people do because we always like to act more than just talk, so…

Chris:

And it's doing some good things - we've influenced a lot of technology.

Marie:

For us, its also services… so services have as part of them technology.

Chris:

I think we had some basic guidelines. Does it affect our quality of life? Will it help us? And if we had a problem, how can we solve it? That's always a question.

Marie:

Like getting this gadget that reads the medication - that's a big issue right now as you get older to be able to deal with medications. Know if there's an issue, a health issue to get the information that you need in order to know what you should do.  That was another area that…

Chris:

It’s another human rights complaint in BC because the drugstores out there wouldn't do it, and Shoppers Drug Mart is among them, and I took that and I went here and it took six years but I now have it. But Shoppers won't promote it to blind people, they won't put it up on their website. And yet they got a whole charitable image side to them: fundraising in terms of their foundation, and good charitable works. And so, one of the things you'll find with many people who are blind - more so from our generation perhaps than the current generation - is a dislike of charities. 

We'd rather you do it because it makes good business sense, because it's the right thing to do, because it's your duty to accommodate, because we're a citizen, we're customers.. [Marie: cause we have money to spend...]

Case in point is our son and our grand-daughter - they both have some visual problems, but they don't like white canes.  So what does he do? He uses a black cane.  What does she do? She uses a green cane.  She can use the cane, but they don't want the stigma of the white cane you see.  So how they're using technology to deal with their issues is different than how we did.

Marie:

Well I used use nothing and I could barely see because I didn't want the stigma either. And finally I fell in a construction hole, and that's when I decided to get a guide dog [laughs].

Chris:

If I want to book tomorrow, that's released tomorrow, and I want to pay, I can get it through audible.com. Whereas years ago I had to wait until the charitable library decided to record it, after deciding whether or not it was [Marie: ‘suitable’] … suitable, appropriate. And boy, if you want to read about a fight, it was the libraries and the issue of pornography and all that kind of stuff that is in your Public Library, which they considered as ungodly.

Well, like thirty years ago Fifty Shades of Grey wouldn't have even been considered as a talking book.  Now I haven't read it because it doesn't interest me, but that doesn't mean I don't have a right to read it. You understand what I mean?

Marie:

It doesn't mean that somebody shouldn't read it for us, or now that we can download it as a text file anyways, so you can read it from Bookshare, for example, it's on there if you want to read it.

Chris:

See, I think one of the things technology is done for us: it's reduced the ability of others to censor knowledge. And that's a big thing that you don't really realize until you look at well, where do we get our information from? Whether it was at the schools - like Marie went to a school run by nuns. They censored the kind of materials she received during her education. Or when you went out to university, even that was liberating because all of a sudden we could access the forbidden fruit of knowledge that was denied us in our education.

Marie:

Canada Revenue Agency's another area where we worked with them for several years…

Chris:

I don't know whether you'd consider it technology, but tax software, to be able to fill in your own income tax, is something we've just been able to get. But it started way back in the 60s and 70s. Their attitude then was, ‘well we'll send a few tax people out to the CNIB one night in March and they'll do your taxes for you..’ and so they did in the early 70s for a while.

Then they started saying ‘this is getting too big’ - there's a lot of other people that want that. So then it went to tax clinics, and then of course they became means-tested..

Marie:

So if you made too much money, you couldn’t access it.

Chris:

So then for us we said, ‘well okay, we want to do it for ourselves.’ The next thing to haunt Revenue Canada was we wanted to read all the tax documents, and the tax forms, and the tax sheets and the schedule. A lot of these technological innovations have come as a result of advocacy and the one thing …

Marie:

..Then you get your big bunch of books and braille every year before your tax returns, but we're proud of doing it, you know like you were able to submit it on a diskette eventually. But again when the service became online, now we want to be able to do it that way as well.

Chris:

So now we can go into my tax or my account on the tax and see what it is.  You know ours was submitted last week, and they say “received / in process of being assessed.”  How we use technology too now. For example, because of the fear for years that we didn't know what was going on in her bank accounts, which was the main thing that provoked the original complaint which ended up with the ATMs, among many other things. We want to know everything that goes through our bank account.  So now the Royal has a thing called alerts, so I go in there, we set it up. So every time I buy something at a store we get an email: large purchase $999..”

Marie:

Anybody can get that.

Chris:

So it's a mainstream thing now but it means nothing happens in our bank accounts that we don't know about. When everything happened then we didn't know about it - you know we'd have to remember what our balances should be, how many cheques we wrote, doing mental math and all that crap. And now we don't. So that's how technology has helped and has evolved. But it's also been, ‘you can't be rigid’ you can't say ‘it's got to be done this way.’ 

Marie:

… Because things change. Things we said we wanted 10 years ago may not be the way we want them today..

Chris:

When we were bringing up our kids, we had no books to read them bedtime stories, Marie, it was another one of our projects. She got mad about that, she got some money, and we Brailled a bunch of children's books for mothers who were blind.

Nowadays you can get books with print and Braille together. And so you can sit with a sighted child and read them “Little Red Riding Hood”… And so now you it doesn't matter whether the child is blind, or the mother is blind, they can participate together, and they're called twin vision books. But that's all in the last 30 years.  It doesn't matter where you go it's a matter of finding the solution and the technology is the solution for many, many things - but not everything.

Marie:

To me another concept that's very important is choice: you need a range of options. For example, a lot of people like the iPhones, but maybe I prefer an Android phone. Years ago we didn't have any choice, and then you have just one choice. Now it's really good when you have more than one option.  Shouldn't expect that because you develop one product it's going to fit everybody that it's going to know work for everybody. Where we all have different abilities even when you have a certain disability.

Beth:

Do you think there is a connection between technological aids, accessibility and human rights, and, if so, in what way?

Chris:

I think 90% of the technology we have today would not have occurred if there weren't human rights cases or the threats of human rights cases, or something as simple as public shame. Like, the broom makers at the CNIB broom factory in Toronto going on strike for higher wages. I think that the point of that is no bank wants to be convicted of a human rights discrimination. When the Commission decides it's had enough, that's when they'll settle, usually at the eleventh hour. In the United States, it's much more clear because it's litigation. The United States, they regularly sue different companies, that's how the Comcast accessible programs…

Marie:

And organisations do it too. Like organizations here are not allowed to do human rights complaints and it’s got to be individuals. And most individuals don't have the knowledge, the stamina to deal with complaints. They just grumble and they won't do anything about it. And in the states, with organizations like the National Federation of the Blind or whatever, they deal with the lawyers. And for us, you take a complaint you're faced with, you know, ten lawyers on the other side and you're just yourself.  So the system here is not quite, you know, it’s not very user friendly, and there is a push again, like there was fifteen years ago. And I know because I was working a lot on the committees that were working to get the Canadians with Disabilities Act in place.  And now they're starting to push on that again with the new government, so hopefully it will go through this time. Because, unfortunately, the human rights system that we have is complaints-based and very individualistic. And a lot of the complaints resolutions, we will never hear about because there's confidentiality aspects when they're resolved at the mediation level. They don't go to tribunal.

Chris:

And 90-95% of results are resolved there. Very rarely do they go to tribunal where you can get access to the records, you see. It's all done under the table on the “Q-T.”

There are not just the Canadian Human Rights Commission, there is the Canadian Transportation Agency, there is a Canadian Radio-Television and Telecommunications Commission. And all of these different tribunals have human rights components in their legislation, but they view their role as to be an impartial third party between the service provider and the person with a disability. And what that means is the imbalance of power between the legal and wealth of a corporation against an individual.

Marie:

That's where the court challenges program helped a lot in the past. The previous government cancelled, but it's supposed to be coming back.  And that was big help. That's why Donna Jodhan was able to bring the public service website issues for resolution and the Human Rights, because she had the help of lawyers under the court challenges program. She wouldn't have been able to pay for that.

Chris:

Another example is that Via Rail were going to buy new railway cars and then weren’t going to make them all accessible for wheelchairs.  The court challenges program paid David Baker and company through the Canadian Council of Disabilities to take Via Rail to court. There you have government money fighting government money and VIA in the end lost as you knew they would. Because you can't buy new equipment and say it's for everybody but people who use wheelchairs - it's absurd.

So the human rights aspect of it is why many blind people - and I think something that needs to be studied - is I think there's a PTSD-type of an effect of a human rights case, particularly if you lose it. Because what these tribunals do is they try to dehumanize the issue and make it as if it's “well is Cornflakes a brand name of Kellogg's or is it a generic brand?” It's not the same kind of issue. It's a human issue. It's an issue that affects people's lives and whether or not these tribunals are the best way to deal with it. When I worked for CTA years ago my daughter told other people in class, ‘he's the chief complainer!’ If you've read my book, that's what she called it.  Who wants to be complaining all their lives? You know, what does that do to your own concept of yourself? That's why the Ontarians with Disabilities Act had great expectations. It has yet to live up to its expectations. It is far from perfect, but that's the hope of the Canadians with Disabilities Act. But it won't help my generation. It will help people in the future because what happens is you get an act, then you have to make regulations and then the various competing parties have to have their say and you pick the lowest common denominator and that's what's implemented in a regulation.

Oh, but if it's not fair enough, you can make a complaint. Well then if you make a complaint then you get into all this other, what I call a minuet or a cotillion dance of King Louis’s the 14th ballroom in the court, where you go through pleading, and written exchanges of information. Blind people particularly are at a complete disadvantage in that kind of structure.

You put me in a room with six of these lawyers and I can talk them under the table within half an hour, you know, but written? I'm at a disadvantage. That's part of the whole thing. I mean, I can think, you talk about technologies. Bell Canada 1992 wanted to charge blind people directory assistance charges, but wouldn't provide us a phone book that we could read! A lady in Montreal and us, we went to the CRTC and they were forced to give us free directory assistance which lasts to this day. And it's being applied to cell phones now, and there isn't the need today that there was 20 years ago for it because I can say, “Google what's the phone number for Gabriel's pizza” and they'll get it for me.  It's a problem of inclusion. And what the Human Rights Commission does is it prevents them  - meaning service providers -  from saying no and closing the door. Because they can slam the door in my face, but they can't slam the door in the face of the Human Rights Commission, and that's the difference.  It's that they make them take you serious, and you don't always win: I'd say we've lost probably 40-60% of the cases we took to the Commissions over the years.  We've lost more than we won.

Blindness is first and foremost information deprivation. We get information from our other senses, but we miss the visual.  The human rights has played a part in making it more equal for us, but I would not say that  - and it's my criticism of the human rights - is that they are not on our side, even though the legislation says they're supposed to be on our side.

Marie:

They're supposed to be on the public centre, the public interest…

Chris:

And so if they're in the public interest, all I should have to do is say: ‘Bell Canada won't give me a bill in the format I can read.” Well sir, what format did you need?  ‘Plain text electronic.’  Okay, the Commission will see what we can do about that.  Instead of that you got to go back and forth, through pleadings back and forth, months and months…  You understand what I mean? It's a bureaucracy gone wild.

 Beth:

How do you think changing attitudes both within and outside Canada have shaped the development of technological aids or adaptive technology?

 Chris:

A short answer is that everybody is looking for somebody else to do it first.  International has had some good and bad effects. And Canadians had some good and bad effects on international.  In transportation, we were one of the first to adopt transportation regulations. And as CCD says in the 90s, we were the leader - world leader - in accessible transportation. But because of the last 10 to 12 years, we are no longer the world's leader.  We’re probably second world right now.

Marie:

Unfortunately the past government, Conservative government didn't do much to help disabled people. They were saying they were by giving money for HRSDC programs and that sort of thing, but when it came to the day to day activities and technology and all that…

Chris:

So your question in part is standards.  Are world standards or Canadian standards helpful? Sure, provided they don't delay implementation. The Marrakesh Treaty on copyright act is currently … the Liberals have introduced it in Parliament. And that'll make a big difference in the rights of students to get access to textbooks.  Well Jeff even has a case of it where a publisher said that our books are for students, not for parents who are blind. Therefore, you can’t translate it into alternative formats for your parents or the blind, even though the students parents could read when they brought it home. That kind of thing plus the difficulty of getting textbooks at university will be dealt with by the Marrakesh treaty which Canada is now introduced. It’s had first reading in the House of Commons and since it cost the federal government nothing I can see it'll go through fairly quickly I think.

Marie:

As Chris was saying, the thing about standards, and the organization's waiting, you know, long before they put things in place for the standards to be in place. You see that a lot under the AODA right now, Ontarians with Disabilities Act.  They all use that while the standards haven't been approved, and standards are a good idea. But you have to make sure they don't take years to be developed.  When we had the banking machine issue, I was a member of the CSA - Canadian Standards Association  - committee on barrier-free design for banking machines. It took a couple of years of meetings after our complaint was settled to develop the standards before they would start making and putting more banking machines in place.

Chris:
And then you know the banks are most international. So what happens in the United States, we don't want one system in Canada and another in the United States…

Marie:

It makes sense…

Chris:

There's a need for harmonization, but too often that harmonization is used as an excuse. Like, the Canadian market is too small. Yes, but I would say that international standards could help us more because Britain and Europe have standards which haven't being applied in Canada - international standards under ICAO in transportation which I know...

Beth:

My last question is what do you think have been important factors in shaping the evolution of technological aids in Canada and elsewhere? 

Marie:

I think that the aging of the population is one of the driving forces. In the United States it was the veterans coming back from the war in Vietnam, and they came back and they wanted to work the same as other young fellows, and so that part had a big…

Chris:

That's where the disability movement really took off - they weren't going to put up with the kind of crap we put up with when they came back from the Vietnam War. There were so many injured American veterans and it's a well-known fact that they drove the technology towards the Americans with Disabilities Act, and onwards. And now that's being applied. For example, any airline that wants to land in the United States has got to obey that technology. Any product you want to sell in the United States is subject to challenge if people with disabilities can’t use it. 

When I graduated from school it was a rarity that anybody finished university, I think at least in Halifax there maybe were three or four in the last ten years before I graduated from school. And I know when I finished University a whole bunch of people like from CNIB and everywhere else came down. You'd think I had walked on water or something! I think the fact that more and more people who are blind are getting educated, and are getting access to employment and good jobs - by far not enough. And are starting to use reasoned arguments… changes in the way we look at blindness coupled with the education, coupled with the fact that technology has made it possible for us to speak our mind…

Marie:

To be aware of more too. We want to know things the same as other people.

Chris:

The same thing for technology - we started out with readers and readers on slates, and now I mean, I can send you an email as I did last night: I do it my way, you get it your way and we communicate, and it's so much easier. So communicating is easier.  The fact that I can send the Prime Minister a snarky note if I want to is far easier now than it was in the 60s and 70s. Plus people can exchange ideas, and I can see what another blind person is doing.

I would say the area that really is hard right now for blind people particularly is getting employment. You can say about special measures and all that stuff all you want, but there what works because people are scared I think people are scared of blindness - this is just my opinion. We used to do a thing called ‘windmills.’ We'd say you've got to have four disabilities, and you got to choose one of them: blindness, deafness, in a wheelchair, or cognitively disabled.  Now you've got hands up: who wants to be in a wheelchair? Who wants to be whatever? Inevitably, people did not want to be blind - it was the lowest on that scale when you've got to choose which disability you had, most people did not want to choose blindness. And it was predictable, and it's still the same today. And I think we're held back a bit by the fact that it's difficult for people to see blindness.

They see a person in a wheelchair sitting at the bottom of a pair of stairs and they understand the need for a ramp.  They see a person who's blind standing in front of a printed sign - they don’t get the same… 

Marie:

...looking for the washroom…which happened at the human rights commission last week!

Chris:

We were there for something unrelated to us, but we were there, and we were looking for the washroom sign so there’s no Braille washroom signs in a government building.

Marie:

Just the regular washroom signs - but they had them but they were not right next to the washroom itself.

Chris:

They were next to the elevator - may be I go in the elevator...is that where I go? You know, so really I think for us technology builds on itself.  The more we can do the more we’ll be able to do. And the more mainstream…. that's another factor, it's far easier..

Marie:

Like talking GPS - they have them in cars now so that's why they come on the phone, they're coming in the car now… I mean, we wanted them for years! [Chris: So maybe I'll drive you all home now in these driverless cars are on the road!] I mean you know there’s a bigger market place because of the aging of the population will certainly help.  People who use their devices now, if they lose their sight as they age they still want to use … to be able to do what they could as much as possible.

Chris:

And the gradual an ever so gradual build up of legislation and rights and…

Marie:

… awareness as well. Like, with kids seeing a guide dogs not as much of a thing as it used to be. For example, seeing kids in their school that are blind working with a colleague who's blind. As you get more blind people around, it becomes more the norm.

Chris:

But there never will be huge numbers of blind people. If you look at the medical profession, their desire is to cure blindness, and much of the research into blindness is how to make you see.  Unfortunately, for some of us, we got to live the way we are, so I think that's another factor: being realistic about your blindness and its an important factor…

Marie:

... and the researcher finding solutions that are user-friendly. Not because, you know, sometimes you hear about new gadgets being developed. All right, well that sounds like a great idea, but you know will I use that? I don't think so.

Chris:

That's why projects like what you're doing are important because they are trying to convey to a broader audience what our evolution, if you will, in Canadian society has been.  The view of blindness in the 1800's to the 20th century is different than the view of blindness today.

I think the empowerment of people who are blind is also an issue now.  Blind people are saying “I want this or I don't want that.” And it's the empowerment of being able to choose as we've said before.  Our social development in terms of movements that is usually a bit behind other people, but the gap between society and blind people is narrower now than it was in the 60s. 

One of the important elements is to document our history. It's not a history – like, as you know and you've read it, I wrote a book about my experiences at the Halifax School for the Blind. I've got some comments back about that from people who said that ‘my mother told me about going there’ and ‘my it sounded like a gruesome place.’ And all of that has been lost. It's never been documented. The whole understanding of our history is not really readily accessible.