Society was willing to support war veterans but expected injured civilians to rely on family. The Canadian Paraplegic Association founders lobbied the government to extend assistance to civilians but many still had to fight their own way forward. Joanne McLeod was one such fighter and as a university undergraduate helped found the New Brunswick chapter of the CPA. She was interviewed first in 1995 by Mary Tremblay and again in 2018 by Dorothy J. Smith. Things have changed yet the fight goes on.
Interview Extracts - Transcript
Transcription extracts from the original transcription by Mary Tremblay.
Mary Tremblay (MT): I noticed some articles starting to appear and there was - I didn't bring it - who made the comment. But around that time they were mounting a campaign to do away with steps and there appeared to be some comments that this was a very rational argument, made sense, and it would take a couple of years and we could convince builders to do away with steps. Was that part of the attitude that it wouldn’t take so long?
Joanne McLeod (JM): I think it was at first. Because it makes sense – to us. It didn’t make sense to the builders, the architects. And it’s a struggle. Even yet, you can’t ease up on it for a minute or something gets built, put up. Even though there are by-laws and regulations, there are so many loopholes in them that they can still get things and you find that you can’t get in. …
MT: And just going back to architectural barriers, when they were building the buildings in the ‘60s, did they start to put in ramps or elevators?
JM: Yes they did in some because we had a by-law passed in Fredericton making it mandatory so a number of them then had to be. And then there was the national building code. But there were still loopholes in that by-law. If it was only three stories, it didn’t have to have an elevator so they were building all these split-entry things. And then you couldn’t even ramp them. So that’s why I say even yet, you’ve got to watch if there’s a building go up and the Paraplegic Association here will make contact right away and talk to them or it won’t be accessible.” …
MT: And what were the issues in the late ‘60s. What were the issues you would discuss nationally.
JM: You know, they didn’t change all that much. I mean, in the beginning we would talk about curb cuts. Well, by the late ‘60s, curb cuts, you didn’t talk about them anymore. You just made sure you got them done. But the architectural barriers, they were still the same. And they’re still the same today. The late ‘60s, we’d be starting to talk then more about government programs, encouraging government to have [employment and placement] programs.
… Then by the early ‘70s, finally we realized, okay, there’s employment, now we can pretty well [get] people to work. But wouldn’t it be nice if they could get included in some leisure activities, not just the sports. The sports movement was coming along sort of side by side. But then other leisure activities, that was something else you tried to impress on government. …
MT: And when did the issue of rights begin to get discussed?
JM: Late 60s. I remember Air Canada and probably CP Air as well, but at that time Air Canada was the first one to come in with this great policy that if you were in a wheelchair, you couldn’t fly unless you had an attendant with you. Well, when CPA heard of that coming down, that was a big thing to discuss at out annual meeting. And they brought in the president of Air Canada, and I don’t know who the other one was, to meet with us. And fortunately, I was there, the lone female. Because these men, these two guys were sitting there with all the other guys and they said, “what it amounts to, you just have to have somebody with you that’s going to be able to carry you off and on the plane.” So then I spoke up and said “okay, who do I take? I don’t really think my husband’s going to be happy if I come to Toronto for a week of meetings and have to bring a guy with me to carry me on and off the plane. I don’t know too many women who can do that. Who do I bring as an attendant?” And they just looked at me stunned, because they had never thought of it. They were just thinking man-on-man. I said it could be fun but I don’t think it’s going to work. So we managed then to get through to them enough to make them see that it was a ludicrous thing. But that’s still something you have to watch out for because every now and then somebody in the airlines will decided you can’t fly without an attendant.
MT: So it’s putting the problem back on the person with the disability rather than the airline? …
MT: And when you joined the Human Rights Commission in ’79, what were the issues you dealt with then?
JM: A lot of the issues, it’s terrible, in disability issues, the same things keep coming up. Because one of the first calls I got was from a person who had come, I think from Montreal, on business, and they were in Bathurst, and when they went to get a taxi, they were blind, and the taxi wouldn’t take their guide dog. And when I told the director, she looked at me and said “but we solved that back in ’70, or something like that. We had that before and it’s all solved.” I said “it may have been solved then, but it’s not solved today.” And every so often we would get that same issue come up.” …
JM: They’re never solved. … You asked about when rights came up. It was back, maybe at a time when we had meetings with those fellows from Air Canada that were saying if you’re going to fly, you’ve got to take someone with you. And then people started thinking, we have as much right to fly as anybody else. …
Transcription of May 18, 2018 Interview, 21:38 minutes
Transcription by Jenn Ko
Dorothy Smith (DS): The first question to launch us off is what are the technological aids that you use most often and how do you use them.
Joanne McLeod (JM): I have a power wheelchair at this point. After fifty years of pushing a manual I needed that for my arms and shoulders so I now have a power wheelchair which has the elevating feature and the tilt. So that is a great improvement from what I had when Mary interviewed me. I also use a ceiling lift for getting in and out of bed which is a great saver on the shoulders again. I have a retrofitted van and perhaps the greatest thing I use the most is that little simple thing we were talking of earlier. What I call the “reacher.” Picking things up off the floor. And that’s what I am using right now.
DS: And you said you started with the plain Jane wheelchair.
JM: It was the Everest and Jennings from California. They weren’t in Canada at that time. That was in 1954. It was heavy. It weighed in excess of 100 pounds and it was 24 inches wide. They came in one width and at that point [I?] it weighed less than 70 pounds. So you cam imagine it wasn’t the easiest thing the world. Either for anybody to lift in and out of the trunk of a car or for me to maneuver
I didn’t have any assistance. As I said in the interview with Mary I didn’t actually get any rehabilitation. I was pretty much given the chair, and went home and between my parents and myself we figured out ways that I could get in and out of the chair and in and out of bed, and the car or things like that.
DS: Do you think it would have made a big difference or not, to have had people show you how to use it?
JM: It certainly would have been a joy. As it was I remember the first time my mother got a call from Don Curren in Halifax who was the executive director of the Paraplegic Association there. And she was just amazed and then Don came to see us. Because she had never had an opportunity to talk with anyone else who’d had a spinal cord injury. And we were pretty much floundering in the dark.
DS: But even when you got to Fredericton, was there a community of people for sharing experiences?
JM: There was me and there was one - I thought he was an older man – I suppose he was in his thirties likely, who had been injured in an industrial accident works at the Power Works Commission. We were the only two spinal cord injured people in the city. That’s when I decided I had to do something about it.
Well once we started the New Brunswick Branch of the Canadian Paraplegic Association. I was working then to try to find the people in New Brunswick who used wheelchairs and needed assistance. We went around the province to find people and by then the first Forest Hill rehabilitation centre had opened. It opened during my first year of university and I worked quite closely with their medical director and between us we were finding people who needed assistance.
DS: What kind of assistance was being offered at that time?
JM: Mainly from the paraplegic association it would be counseling. It would be finding ways – if they needed technical aids with their wheelchair, we would find ways to help them get it. Because of course the association didn’t have money to buy wheelchairs but we could lobby other groups that could do that. And the rehab centre, when people got in there of course they got the full scale of counselors and physio therapists and that sort of thing.
DS: So the emphasis at the very beginning was finding people, in effect creating a bit of a community and then the wheelchairs?
JM: That’s about it
DS: Which ones do you think are the most important for living your daily life and then of course there’s just getting out into the community. They might be slightly different.
JM: For getting out into the community the retrofitted van is something that the person who relies on a wheelchair, a power wheelchair in particular. If it’s a manual wheelchair. For fifty years I put the manual chair in the backseat of a two-door car and that was fine. But once you get a power chair then you have to have the van and that allows you certainly to get out into the community. And of course if you didn’t have a wheelchair, you couldn’t get out into the community. So I don’t know how you could really say which one is the more important. They come together really.
DS: But have any of them ever, that you felt, hindered you from doing your day to day life.
JM: No I really couldn’t say there’s anything that has hindered me. The only thing that ever hindered anybody with a disability, I think, is the attitude the able-bodied person has toward them. And that was the big thing I faced being the only one around for a long while.
DS: In your own community and in Fredericton?
JM: Yes. It was fine in my own community because it was a small town and my father taught in the high school so when I got out of hospital I just automatically went back to high school. Nobody thought anything of it. The students that were taking the shop classes they built the ramp and that was fine. But it was quite different when I dared apply for university. The attitudes were quite different then.
DS: … Now you have a power chair with a lift action. Did you find a difference in your interactions when you were able to lift up to the same height as the people you were talking to?
JM: Yes. I hadn’t really ever given it much thought. But that’s true. Otherwise they’re bending over, or kneeling or something like that or just plain standing erect when you’re trying to see them. So it is quite a difference when you are able to see them on the same level.
DS: Does the lifting up make a difference when you’re dealing for the first time with someone on a professional basis?
JM: Well the thing is I didn’t have that technology till I’d been retired a number of years. But I can tell you a little anecdote that might or might not fit with what you’re doing. But the one of the worst experiences I had was with a doctor. At that time I was writing the report for New Brunswick that went to Canada on Canada’s implementation of the optional protocol of the international Human Rights Act. And one of the questions on the section I was doing that particular year was what being done for women at risk in pregnancies and for babies at risk. So there had been a recent neonatal unit opened at the Doctor Everett Chalmers hospital and I called and made an appointment with the medical director. So when I got there, he looked at me and he said I suppose you do this all the time. I said oh no we only have to do it once every two years and each year it’s on a different one of the article. I thought he was referring to writing the report. And he said no, I mean make an appointment on the phone and then turn up in a wheelchair. And I looked at him because I thought he was being funny but he wasn’t. And so I thought, oh I guess I just ignore that and I went on and asked him the first question. And then instead of answering he would ask me something about being in a wheelchair. So I just would ignore that and kept on asking the questions until finally I got the answers I needed. And then he took me on a tour of the unit and the infants and so on. Then he said, well how did you get here. I said well I drove here. Oh. Well, how did you drive. And I said I have hand controls. He said where are you parked. And stupidly I said well I’m parked just at the front of the hospital. So when I left when I was starting to get in the car I thought I know he’s peering out that window because his office was on the front of the hospital. I thought this is the time I’ll probably fall on my face or lose the chair down over the hill or something. But he couldn’t cope with the fact that I was in the wheelchair and I was doing this report. I don’t think if I had an elevating chair it would have helped too much.
DS: So the technology would not have changed that man’s attitude.
JM: No. In that case the technology being the wheelchair was throwing him for a loop.
DS: Any wheelchair.
JM: Yes. Well when I went back to work and told them all about it, everybody after that – I shouldn’t have told them - because after that somebody’d see I was making a phone call they would yell, be sure to tell them you’re in a wheelchair.
DS: So the wheelchair for that man became the one thing he saw. Is that fair to say?
JM: Yes. He didn’t see me or recognize that I could be doing what I was doing. He saw a wheelchair.
DS: But you remember that one quite vividly so - is it not par for the course. Was it usually better than that?
JM: After a while it was because, I didn’t see the wheelchair. I just considered myself on a par with all the rest of the world and went about my business so gradually if people when they got to know me, they didn’t see the chair either. Different times I would have people say, oh I keep forgetting you’re in the chair, aren’t you.
DS: When you were working setting up the new Brunswick chapter and you were finding people and you were help them access technological aids, were there any particular barriers that came up?
JM: Well one, I can give you a bad and a good example. There was a new medical clinic being built in the city – oh, must have been in the ‘60s because I was still at the paraplegic association. And I met with the head of their planning committee as soon as I realized it was going to be built and explained to him the need for having ramped entrances and accessibility because at that time there just weren’t buildings that were accessible. He said after he listened to me - he said no. We’re going to have it this way and he had a plan that was the good old split entry. You went up a flight of stairs and you got on a landing and then you went down a flight or up another flight. I said well how can someone in a wheelchair get to see a doctor. He said well there’s going to be a side entrance at the back. You can get in there and the doctor can come down - some one of the doctors won’t be in that day and he can use his office and see you then. And you can imagine how well that worked. I said but the drug store is on the second floor up the first flight of stairs. From the street you went in about ten steps and I said it’s up all those stairs. He said oh well you people – being people in wheelchairs – can get somebody to go to the drug store for you. You don’t need to go. So that was my success with that. But the Lord Beaverbrook Hotel, which at that time was the only hotel in Fredericton, was doing some renovations and I met with their manager. The structure of the hotel was from the lobby to go to the dining room on one side or the ballroom on the other, you went up probably four steps. And I explained to him the problems for someone in a wheelchair. They couldn’t go to functions in the ballroom or they couldn’t go to dinner in the dining room. And he agreed that they would put ramps in, so there was a ramp on one side to the dining room and one on the other wall to the ballroom. And those ramps are still there and still in use. And they were the first ramps in a commercial building in Fredericton. So here we have the medical profession, who should be quite aware of the problems, just flatly refusing to talk to me – of course shouldn’t blame the whole medical profession. It was just one individual. On the other hand we have somebody who was running a hotel and quite willing to make the changes. …
DS: You have the wheelchair. You have places to go. You have wheels to get you there. But you can’t reach it - not because of the wheelchair. Not the technological aid but the attitude. If this is a chicken and an egg, where would you put the emphasis?
JM: The individuals in wheelchairs have to get out and be seen before other businesses and all these people will realize they exist. When I was injured in ’54 there were still, and then in the ‘60s when I had started the paraplegic association here, there were still people with disabilities of one sort or another who were literally in the back rooms of the houses. Out of sight out of mind or there was the old theory if it was a birth defect that parents must have done something really bad somewhere in their life to have a child like that. You know that attitude. So they weren’t out where anyone saw them so there wasn’t any need to have accessibility..
DS: So visibility makes a big difference?
JM: Yes. But again it’s the chicken and the egg. You’ve got the disability but it’s pretty hard when there is nowhere to go. Now, they refused my application for university simply because they said I couldn’t walk. Someone on the Board of Governors said that it didn’t say anything in their constitution that a student had to walk so they had to let me in but with the saying of one of them that she wouldn’t make it till Christmas. Which fortunately the man who was fighting for me on the Board told my father who told me. And I said well, we’ll see about that. So they weren’t anxious for me to be there. And they didn’t make any provisions to make it easier for me. And UNB [University of New Brunswick] is on a hillside so there wasn’t a building that didn’t have multiple steps and multiple floors. It was very difficult to get around. So with that attitude even though somebody was visible and wanted to do things - you know, do we really want her here?
DS: In other words did they want to have to adjust? Is that what they were afraid of?
JM: I don’t know. Whether they thought they were going to catch it or whether they just didn’t want to have somebody in a wheelchair around because they weren’t supposed to be at university. They were supposed to be in a hospital or something like that?
DS: So there’s still people in the 50s, 60s, maybe into the ‘70s … maybe today… their image of even a wheelchair is an invalid chair? Someone who is not in society?
JM: Yes. I don’t know if it’s as much today because there are so many today. When I was the Executive Director of CPA in the ‘60s, I knew – and I’m talking now spinal cord injury – I knew every paraplegic in the province either by sight or by their voice on the phone. And now in the city of Fredericton I’ll go to the mall and I see so many people there and I don’t know them. And they’re ones who live in the city, so there’s so many more
DS: And they’re now out in the malls and everywhere else.
JM: So they’re pretty well accepted now.
DS: There’s also such a wide range of needs for different people who use wheelchairs. Were people really getting what they needed for their specific set of impairments.
JM: In the 60s I would say it was doubtful. But that’s when the myoelectric department opened in Fredericton with Professor Bob Scott and they did some amazing research particularly with amputees getting – what was it - the myoelectric arm that moved. So they were starting the research then. I haven’t kept track of it lately but I think there’s quite a wide - I know at the Stan Cassidy Centre there for rehabilitation - there’s quite a wide variety of different things they can get people. But back in the 60s. No. you got a wheelchair. That was it. …
DS: - So we’ve got technology. We’ve got people’s attitudes. The technology has brought people out into the street. People see them - this changes attitudes.
JM: Well the attitudes have certainly come a long way over my life span. …
DS: In the interview you had with Mary Tremblay you mentioned that on your day one on the job with human rights a complaint came in of something that had been fixed long before, in theory.
JM: Oh yes. That was the university. A young man had applied for the University of Moncton and they had to submit a photo and somebody said, well what’s that behind his head and somebody else said that’s a headrest on a wheelchair. Well. He couldn’t be admitted but that didn’t last very long.
DS: You are retired now. It’s hard for people who have been professional to totally disengage. So are you still hearing that these issues come up or is human rights much more of a no-brainer for people now.
JM: I haven’t heard anything of issues like that coming up. But still the same complaints all the time I was there came over and over and over again, the same ideas that the only about not being allowed because of a wheelchair but there were still ones with guide dogs. …
DS: Are there any additional comments you would like to make ?
JM: I can’t really think of any other than I am glad that technology has advanced and I am taking advantage of it because many of the things that I’m talking about – say the powered wheelchair. The first one I ever saw they brought out at a meeting. I was on the national board of CPA and they brought it out in Toronto and it was called the Fortress. And it looked like – it was a Fortress Company – but it looked like a fortress. There would be no way you could move anywhere. It was gigantic. So now to have them streamlined as they are, it’s quite different.
DS: When was that that you saw that first one? ‘60s?
JM: It would have been in the 60s yes – early to mid ‘60s.
DS: So fifty years later at least they’re ….
JM: Oh yes, and they’re not big clunky like that one was. More like you’re putting a motor on your recliner in the living room. …