Paul Young is an internationally-recognized keynote speaker, winner of the Governor-General Meritorious Service Cross, the former Chair of the Council of Canadians with Disabilities, Founder of People First of Nova Scotia, former president of People First of Canadian, and retired CBC Radio technician.
Paul’s opinion is that diagnosis talk is okay as long as it is relevant.
But diagnosis talk is not okay when what you should be talking about WHO the person is.
Using words that focus on what people cannot do tend to lead to people not filling their potential.
Focusing on who people are and what their interests are leads to people gaining competencies and reaching their potential.
Listen to Paul’s story – from the sheltered workshop where people believed he could only become a dishwasher – to a career at the CBC.
Genia: Hello and welcome to the Good Things in Life podcast. Today I’m speaking with Paul Young. You might remember if you’ve listened to Paul’s previous episode that Paul is an internationally recognized keynote speaker, winner of the Governor General Meritorious Service Cross, the former chair of the Council of Canadians with disabilities, founder of People First of Nova Scotia, former president of People First of Canada, and a retired CBC radio technician. And Paul reached out to me after last week’s episode when I was talking about what the term intellectual disability means and talking about the use of the R-word. So, Paul reached out just to chat about his thoughts on the subject. And so, here we are. Paul, thank you so much for reaching out and for agreeing to be on the podcast again.
Paul: You’re welcome. And I kind of enjoy talking about these issues even though I’m supposed to be retired, but it still means a lot to me to make sure people understand about disabilities, whether it’s the diagnosis of it or whether it’s the finding the person underneath all that diagnosis.
Genia: Right, right. So, let’s just, let’s start by talking about, or hearing from you about your thought about whether or not it is ever acceptable today to be using the term mental retardation when the purpose is to be trying to very clearly communicate to somebody with an intellectual disability means, you know, in the context of a situation where it matters, where clear communication matters.
Paul: Well, I have a hard time with this, but I can see where a new parent that hears that their daughter or son has a developmental disability or an intellectual disability. And they need to be clear on what needs to be done to support the person and understand what they’re up against to do that. And I could see in that context with chatting with the doctor, chatting with the psychologist or whoever that may be appropriate, but to talk about it in a cocktail crowd setting or any setting like that. I don’t think it’s appropriate because what happens is that becomes the focus. And the son or daughter is lost because they’re just talking about what the problem may be and not who they may become or who they are.
Genia: Right. Yeah. I think that’s a really important point, like context matters. Like, you know, the why-are-you-talking-about-it matters. You know, if you’re talking to a physiotherapist or a whatever, kind of, like you said, a psychologist or a doctor or you’re having a conversation about treatment or relevant supports, then that might matter. But it’s not the appropriate conversation to be having or words to be using or even ideas to be introducing if what you’re talking about is the person, like who the person is in a total sense. I wonder if you could talk a little bit about the position that People First had while you were in a leadership position about, you know, I know that People First really spoke out against the use of the word retarded and People First was involved in getting Canadian organizations to change their names from things like Association for Mentally Retarded Children and that type of thing. I wonder if you could speak about the advocacy that People First did?
Paul: Well, it was the advocacy of People First and the advisory committee prior to People First, I can’t remember what the title was, but basically, I think of myself as self elegance of the association, spoke code that it was a hurtful word and they basically didn’t want to be known as that. And as the People First started years ago, they want to be known as people. And so, we pushed for that over the years. And when I was a president, I made, I spoke go against it and use the example of that, you know, we needed to be recognized for who we are, not what we have.
Genia: Yeah. What we have being like the diagnosis you mean?
Paul: Yeah, yeah.
Genia: Yeah. And so, there’s two issues in my mind, I think that I’m hearing you speak to. One, is the use of the term being hurtful because the term is used as an insult, like “Oh! That’s so retarded”, gets to use this sort of like, that’s an insulting use of the word. But then the other piece, which in some ways I think is kind of a, it’s a broader issue, is not wanting the focus on people’s lives to be on the diagnosis of having an intellectual disability, but wanting the focus to be on who the person is and how to help them to have a good life.
Paul: Yeah, that’s right.
Paul: Yup. That’s exactly right.
Genia: Yeah. So, I’d love to talk about those two issues separately then if we could for a minute. So my perception, my opinion about the use of the word retarded is that it’s not the word that’s the problem per se. It didn’t start, there are some words that are used to describe people that have always been meant as an insult, like they’re just an insulting word. So, like the N-word to describe people of color. For example, there was never a time in which that was a neutral, a value neutral term, but mental retardation actually just at one point was a diagnosis and it wasn’t used as an insult, but it became an insult over time I believe because people with intellectual disabilities are devalued in our society. And so, it became an insult to say you are like somebody with an intellectual disability because of that devaluation.
Paul: Yep. Oh no, that’s right. But the word itself is a negative word.
Genia: How so?
Paul: How so? Because it says being retarded means you’re not, you’re being held back or you’re not moving forward, and that you’re not five years old, you’re three years old. And that when you’re, like when I was 21, I was in , I’ll be quite honest with you, I was not a 21 year old guy. I was probably 13 or 12 year old guy and doing things as a 12 year old would be doing, not when a 21 year old would be doing. So, that is being held back. That is not positive. It’s not moving forward. It’s moving, it’s being held back. That’s my interpretation of the word retarded. And therefore anything that is negative or sounds negative is going to be used in the way that we just talked to him.
Genia: So, but do you think that that is about the word or do you think that that is about how people get treated?
Paul: I think it’s a, both. I think in way is about both. I think that the word as I just said, is what it is. But, and so, it’s the reaction to the word that people react to the word and then that makes the word a insulting word.
Genia: Right, right. So, you weren’t, yeah. So, why do you think that when you were 21 you were more like a 13 year old? I’m going to go out on a limb and say it isn’t because of, no, I’m not going to go out on a limb and say anything. I want to hear from you. And then, and then I want to ask you questions.
Paul: Well, let me guess what you’re trying to say. It is because of the way I was, I was acting the way I was acting because the way I was treated.
Genia: Right. Yeah. Right. So, lack of opportunity, lack of expectations that you would act like a young man as opposed to a kid, that kind of thing.
Paul: Or even being showed how to be act like a young man.
Genia: Right, right, right. Okay. And then so, what I, because of what I was, what I’m worried about when, when people talk about, when people hear the idea that when you were 21, you were more like a 13 year old. What I worry about is people thinking that you subscribe to or agree with the concept of developmental age, which I would imagine would not be something that you think is a legitimate concept. Do you know what I mean? Like people say when people say, “Oh! My child is seven, but has the developmental age of a seven month old” or something like that.
Paul: Well, I’m not saying that, all I’m saying is that I was a victim of the label and the environment that was around me.
Genia: Right. Okay. Yeah. That’s awful.
Paul: I’m not saying that my mind was like that, but my mind was not allowed or couldn’t, didn’t know that I could maybe think a little bit differently.
Genia: Yup, yup. That makes sense to me. And I think also the, you know, the, I think that it’s very difficult to separate out what somebody can communicate versus what somebody, who somebody is, you know, so, I know that it was, you have said previously, it was your work through or your work at the CBC that really allowed you to gain an awful lot of competencies that you hadn’t been able to gain previously. And so, it’s also sometimes, related to, like what people are able to express developmentally. Also, it has a lot to do with the opportunities that they’ve had for growth and for communication, like expression of what they know.
Paul: Yup. I wonder where to just make this point, in, I won’t get into great detail about it, but while I was in the, what I called a cocoon of impossibility and going to a workshop, it was told to me then that I would not be able to ever work in the field I went into, which was radio and that the only possibility of me ever working would be a dishwasher. Now, why I bring that up is because again, it’s the environment and the atmosphere that’s created by the word retarded. So, if a person is retarded, then they’re only going to be able to do a very, very small job or a very mundane job like dishwashing.
Genia: Right. Can you tell me what you mean by cocoon of impossibility?
Paul: As you might remember, I’ve been doing a lot of guest lecturing at universities and community colleges and community living events about my story. And when I was in Holland College in Charlottetown describing my younger days as a person with a label, I suddenly realized that I was in a cocoon where I was not going to do anything at all, or do all whatever, all the things I have accomplished in my life. In that era, in that moment, as a young person, I was not going to be able to do anything like that. And therefore, between the work sheltered workshop and my family life, I was in a cocoon where I’d, as I said a while ago, I was a 13 year old and doing what a 13 year old does and that’s all I would ever be able to do. And so, I was in this cocoon of impossibility and by the way, everybody jumped on the bay may go, Monan you broke up the cocoon. All right, try doing that, then that even made the assumption that we’re children all our lives. So I dropped, I didn’t drop the cocoon, but I definitely dropped the butterfly thing because it wasn’t bringing up the point of that a person and needs to be a person with desires and dreams, all that cozy.
Genia: Okay. And let’s move on to diagnosis specific ways of sort of thinking about people with disabilities and how to help them to have a good life. So, there are lots and lots of parents who are very committed to helping their children reach their potential and live good full lives and who believe that the most pressing needs of their son or daughter is to have sort of access to all of the therapies and services to be able to address the diagnosis specific problems. And yesterday when we were chatting in preparation for today, we were both acknowledging that good health care and therapies are important. So, I’m not trying to, there’s no part of me that’s suggesting that that’s not important. But I wonder if you could speak a little bit about the issue that you’ve already raised, that People First was really felt strongly about, which was People First not diagnosis first as a strategy towards, you know, being respectful to people and supporting them to have good, full lives.
Paul: Well, the only example I can give you is what I experienced. My motor coordination was very bad when I was a child and it continued to be bad growing up being a teenager and so on. But when I showed it, when I got into a radio, the type of work that I was doing helped me with my motor coordination problems. And I wasn’t focusing on making my fingers move one at a time, my focus was on what I was doing to put a piece of audio together and my desire to do a good job on that audio that helped my motor coordination immensely. So again, the focus was on what I was doing not on what I was trying to fix about me.
Genia: Yup. And how did you end up at the CBC?
Paul: How did I end up at the CBC? In a bit, trying to make it very short, I was offered a job at the private radio station CHER by Dr. Stewart March and to help look after the record library. And one of the jobs was to keep track of the new entries coming in and knowing where they are and filing records was a big challenge for me because of my vocabulary, spelling and so on. And I’ll have medical orders, so I didn’t do very well with that. And that job was taken away from me. I decided to, they had talked about building a new studio for the radio station. I decided to go visit a friend of mine who worked at CBC and he introduced me to a gentleman and the gentleman said that he would help me with some of my working skills. And he did do that. And because of the training that he was giving me unofficially, him and others at the station decided that that they were going to find me a job at CBC and they did.
Genia: And why the CBC? Like, really what I’m trying to get at is that you ended up at the CBC because you had a passion for music and somebody recognized that.
Genia: So, that’s really the, like that’s the aspect of your story that I really think speaks to why focusing on the whole person is so critical. Because using your story as an example, you, people told you that you could only be a dishwasher. Somebody though recognize that you had a real passion for music and gave you an opportunity at the CBC and then there was a journey, right? It wasn’t immediately successful as you’ve just outlined.
Paul: So, no, no.
Genia: Yeah. It was a journey. But then when you found your kind of spot, your niche, then in order to be successful, you had to gain some significant skills, which you then gained in much shorter time than you had spent in physical therapy trying to gain those skills as a therapy.
Paul: Right. And technically, I think technically, in the workshop setting that was supposed to be doing the job that the CBC did with me, but it didn’t. For instance, the workshop I talked about, they said I only be a dishwasher, put me through several aspects of work and nothing happened.
Paul: But when I got, when I, I loved listening to radio and loved music, and I think my enthusiasm and passion for music and radio, that got me to where I needed to be. Why CBC? The only reason the CBC is because I always had a high respect for the CBC and the quality of work that came across the airways. And because the friend I knew was a CBC employee.
Genia: And how did you meet that person?
Paul: Well, to be quite frank with you, he was a kinsman. And he, one year, he was put in charge as the chair of the committee for the workshop. It was between the local association and the kinsmen that came up, but the idea of how we named sheltered workshop. And so, this one year he was the chair and he was a very kind and outgoing person who would not look down at you, but will sit down and chat with you or carry on what you’ll end. And so, he got to like me and he got the like the other clients as well. And I just knew that he would show me the CBC and I called him and he did.
Genia: So, you actually reached out to him?
Paul: Yeah. Oh, yes.
Genia: Yeah, yeah. That’s really interesting. So, he was willing to help you, but somebody, in your case, you had to point out that what really was helpful to you was an opportunity for real work at our, you know, real job in the community, not the volunteer work that he was doing in the workshop.
Paul: That’s right.
Paul: He opened the door and letting me in to see what the CBC looked like.
Paul: And he said, “Why don’t you come up another time? Come up, I’m here by myself in the evening. Come up and sit with me and that.” And I said, “Oh, I’d like to do that.” So, he did and that very next time I visited, he introduced me to her audio technician, Ray in radio. And it was he, the audio technician, who asked me some questions and invited me to come up and he would show me some stuff. And that’s how he became my mentor and I was actually trained right in CBC, how to be an audio technician.
Genia: So, we’ve moved very far away from a discussion about the words mental retardation or retarded towards a conversation about what happens when people are focused on as individual and whole people, which is exactly kind of both of our point, right?
Genia: When you focus on a diagnosis, regardless of the words that you use, you know, there’s great loss there and I just, we need to wrap this up. But I really want also one more point that seems really important is that it takes time and sometimes it takes a lot of time, and I know that you have told me in the past that if somebody had looked at your life and looked at you when you were in that workshop and then looked at you when you were holding down your job at the CBC, they would never believe that the guy in the workshop could be the same guy. And so, I just, how long did that take? Because we know it’s a journey, right? Like, so I’m just, I just, how long did it take from the time you’re in the workshop until the time when you were in the job that you were successful at the CBC?
Paul: Well, how long did I take? It took, okay, well say I left the workshop in ’76 and I was hired as a group trainee technician in 1980, 4 years.
Genia: Yeah. And then when you were hired, were you already, is the group tech technician, is that the role you ended up in, that you were successful?
Paul: Yeah. I ended up being in a, because of the union bylaws, it was a group trainee, group one trainee technician.
Paul: And in order, the CBC here in Sydney had a committee made up of management and union and they would discuss things or, you know, versus the contract and so on. And when there was no real job for me at the CBC, so the union approach management about creating a job. The manager at that time was very willing to look at that.
Paul: The radio techs in the evening especially were, they would have, in those days, reporters weren’t allowed to record anything, but some been at a meeting or whatever and then bring it back. And then we would have to put it together for them. And so, in a lot of evenings they would have, we’d call it a music pickup, but there were music recordings. So, we would record a lot of local talent and put on a show, to put on a CBC show in Sydney called TalentCape Breton. And so, itwould take a number of hours to record, do the recording and they would end up at two or three o’clock in the morning going back to doing whatever is supposed to do in the earlier evening.
Paul: And so, they decided that they would take that basically, that over time money and put it into a salary where I would be a sort of an assistant. So, when the tech was recording, I would do the normal work in the master control. And on top of that, the real key to all this which I don’t talk about enough is the union insistent that I would not replace the tech, that I would work along the tech and only do what the tech wanted me to do and not take any jurisdiction away from him.
Paul: And when that happened, that’s the real key why I stayed there because the tech was there to support me when I needed support.
Paul: They didn’t call it support, but indirectly that’s exactly what it was.
Paul: In other words, I had a job coach.
Genia: Yeah, that’s pretty amazing. And a lot of things, a lot of creates, it took a lot of creativity on the part of a number of people in order to make that happen for you.
Paul: Oh, absolutely. I mentioned the mentor and the gentleman that I knew that took me into the CBC, but, no, no, a lot of people. And in the station, not in the way you might think. In the station, a lot of people were rooting for me and not because I want some that workshop or not because I had a disability, but because I had so much desire to be in radio.
Genia: Right. And that, yeah. So that’s another…
Paul: They could see that. I mean, I just would walk differently. I mean, I was so proud of it.
Genia: Yeah. So, that’s another good point around focusing on the person, not the impairments. It’s really motivating to people to support you and, or to support somebody. And to get behind them when the person really clearly shares a passion and interest with the other people as opposed to sort of saying, well, “Here’s this guy from the workshop that we all kind of want to have like a charity case kind of situation”, that only goes so far, right?
Paul: Yup. It may have been a little bit at first, but after they seen me and after they seen what my mentor was doing with me, they all jumped aboard.
Paul: And understood what was happening. I met one guy about three years ago at a golf course and I was talking to a friend of mine, we were regard being together and he said, “I could see every week Paul getting better. His head would come up more. Paul would be more competent, more outgoing. You could see it happening”, he said.
Genia: That’s amazing. And so, that really, again, speaks, comes back to that to a point that I think is really helpful for parents to hear, which is just because you can’t see how your son or daughter might get from where they are today to somewhere quite amazing down the road, doesn’t mean it can’t happen. Like it took years. And you’ve said previously that the person you were when you were in that workshop would not be recognizable as the person you were when you at, you know, after those years and mentorship and opportunity at the CBC and the years of having that job and what that meant for you personally and your development, you know, not just in your motor skills, but also like you said, it changed the way you walked, how you held your head, your confidence, and then you’ve gone on. Then of course, because of those opportunities to be a leader in advocacy, disability advocacy and made a, you know, a really big impact in the lives of many other people as well.
Paul: Well, I hope so.
Genia: So, yeah. Yeah. Well, I know so. I know so.
Paul: Genia, I just on something and I would like to get it up before I forget it, you were saying that they can’t imagine me being that person in the workshop, right? Is that what you said?
Genia: Well, what I have heard you say that maybe I’m remembering incorrectly, so please correct me if I’m wrong, but I have remember you saying a number of times that if you compared the person you were when you were in the workshop to the person you became, that people wouldn’t believe that the person in the workshop could be who you became.
Paul: Right. And vice versa, because when, I haven’t been spoken publicly in for over five years, but vice versa, because I remember in module at a world host conference, I made a very short presentation, but similar presentation as I normally do. And a woman comes over to me and says, “Paul, you were misdiagnosed. You were never mentally retarded.”
Paul: So, darn if you do, and darn if you don’t. Right?
Genia: So, what I think, that’s really interesting.
Paul: Because here I am in the workshop, not ever thinking of what I’m doing or did the latter part of my life and then someone telling me, well, you weren’t really that, you weren’t disabled at all. Wait, so?
Genia: That is really interesting because it says so many things. I mean, it is certainly possible that people get diagnosed as having an intellectual disability when they don’t. I think we see this quite frequently actually, but I also think that that kind of comment really speaks to people’s beliefs about what people with disabilities can accomplish and what their potential is.
Genia: And certainly not everybody…
Paul: And that’s my point.
Genia: Yeah, yeah, yeah, yeah. That’s really powerful, Paul. And you know, it’s not that every person is going to become an internationally renowned keynote speaker and national advocate and hold down a career at the, or have a career at the CBC. Not Everybody is going to do that. But I do think that the facts that people believe that somebody with an intellectual disability, that just means that your life is off the table as a possibility. That affects everybody, you know, diagnosed with an intellectual disability and it means that we are probably in many, many situations preventing people from reaching their full potential because we just don’t believe that potential exists.
Paul: And what about the person and if the person, people around them looked up the client or why do we want to label it looks up to these people and said, why you can do that? You’re going to be a dishwasher. So the only, you know what made me, it wasn’t me that had the dream to go, “Are you wanting to be in radio?” Never. [inaudible] just don’t want to be radio. Right? And, but for those people that I had around me were making me discover that I am a radio person, that I know what radio should be doing. It was them who showed me that I was on the right track,
Paul: That, I didn’t say, “Oh, I can do this.” They helped me discover that I could, that I could.
Genia: Right. Yeah. So, that really speaks to the power of expectations. Whether they’re high or low, right?
Paul: Well, in the low expectations in the system or concluded being possibility won’t get you to deliver you to the higher expectations.
Genia: Yeah. Yeah. Awesome. I think that’s a perfect place to end, Paul. You know, as always, I appreciate talking to you and I appreciate your contribution and I really, really am grateful that you reached out after last week’s podcast episode because I always knew that that was an incomplete, kind of monologue on the issue. And of course we haven’t covered today all of the things that one might cover in a conversation about the question of what does intellectual disability mean? But I really believe that your contribution today definitely fills in big, big portions of what we should be thinking about and the real importance of having deep reflection on what happens in people’s lives when a diagnosis is made, but more specifically what happens when a diagnosis defines somebody’s life. So, thank you so, so much.
Paul: You’re very welcome, Genia. I like to say that I understand what parents go through. [inaudible] in my day there wasn’t, you know, expectations of who is this person, what are we going to do with this person? It was just that nothing was going to happen for me and my mother particularly did not want me to get hurt. And so, and the, where are we, what’s going to happen to my child when I die is tremendous. And the reason I understand that is because of two things. First, my mother saw me at working at CHER. My mother heard my name, heard me speak on the radio because I was asked to wish people Merry Christmas. And when she was dying, I had tried to get ahold of Dr. Stewart March to help me get my mother to the hospital because my father was not understanding what was happening and he didn’t want to. And the last thing I told her was that, “Dr. March wanted you to know mom, that he would take care of it. Let’s see”, when she died.
Genia: Yeah. And Dr. March was somebody who did support you, too.
Paul: Nope. And was a doctor and she knew him and she spoke with him many times behind my back, so to speak in a nice way about me. And the other reason that I understand that is because when my brother Tony came under the institution and in the group home here in Cape Breton, I was making sure that he was being supported, going and being looked after right. And taking him for drives and making sure that we saw him almost every Sunday and defending him against the system. And that was a worry for me cause I didn’t want anything to happen to my brother.
Paul: So, you know, I’m not saying that in a grand way, but you know, in some way I was more of a guardian or parent in one way.
Genia: Yeah, yeah, yeah. I understand. Yeah, I understand. I hope and anticipate that we will do this again.
Paul: Oh, I hope so too, actually. Cause I enjoy that because I miss teaching. That’s a big assumption on my part but I call it teaching. I know my friend over in Charlottetown says, “Yes, you teach.” Yup. But the other thing is that I was very fortunate to meet the right people.
Genia: Yeah, for sure. Paul, thank you.
Paul: You’re welcome.
Genia: Thank you so much.
Scott: Thanks for listening to this episode of the Good Things in Life. If you want more information, you can find us on the web at goodthingsinlife.org. Or you can find us on Facebook, just search for Good Things in Life. You can also find us on Instagram at goodthingsinlifeorg, that’s Good Things in Life O R G.
Scott: Hi everyone. My name is Scott Johnston. And I have over six years of experience as a podcast host, producer and editor. And as you might’ve guessed, I help Genia edit this episode of the Good Things in Life podcast. If you or someone you know is looking for an editor for their podcasts, I’d like to hear from you. Please feel free to send me email at firstname.lastname@example.org. That’s scott S-C-O-T-T, will W-I-L-L, johnston J-O-H-N-S-T-O-N @gmail.com. Thanks. And I hope to hear from you soon. Until next week, keep smiling and never stop striving for the good things in life.
Special thanks to Paul Young for joining me this week. Until next time!