Below the Radar Transcript
The Power of Disability Part 6 — with Barb Goode
Speakers: Alex Abahmed, Al Etmanski, Barb Goode, Aaron Johannes
Alex Abahmed 0:08
Hi, I'm Alex Abahmed with Below the Radar. And you're listening to The Power of Disability, with your host, community organizer, social entrepreneur and author Al Etmanski. This is a six-part series of the Below the Radar podcast. The Power of Disability features interviews with special guests centring and celebrating the contributions of people with disabilities.
Al Etmanski 0:35
Hello, everybody. Welcome. I'm Al Etmanski. and this is The Power of Disability podcast. In this series, we highlight what history has overlooked. [History] has overlooked the contributions of people with disabilities, or they've separated their disability from their contributions. Today's power of disability guest is longtime friend, Barb Goode. Barb is one of more than 100 people that I profiled in my latest book, The Power of Disability: 10 Lessons for Surviving, Thriving and Changing the World. Welcome, Barb.
Barb Goode 1:15
Thank you for having me, Al.
Al Etmanski 1:18
I'm really looking forward to this conversation. Can I tell people a little bit about you?
Barb Goode 1:22
We may have to R-rate it.
Al Etmanski 1:26
We may have to R-rate it. I like that. I'm such a big fan that I could go on for a long time, but I want people to know that you are seen by people around the world as a builder and a leader of the modern-day disability movement. You're a pioneer. You specialize in breaking stereotypes. People put your contributions right up there with people like Rick Hansen, Terry Fox, and Michael J. Fox, here in British Columbia. You're a founding member of People First, a worldwide movement of people with learning disabilities and developmental disabilities who are tired of being labeled, and who want to speak for themselves. In 1992, you addressed the UN General Assembly. You're an author. Your memoir, The Goode Life: Memoirs of a Disability Rights Activist is, in my view, a really important contribution to literature and to social change. People may not know this about you, but you're also the person with the largest number of contacts in your phone book of anybody I know, and you never forget a person's birthday. Barb, I'm really looking forward to this conversation.
Barb Goode 2:50
Thank you, Al.
Al Etmanski 2:51
So, you're joining us from your home in Burnaby, and you've got your friend and working partner, Aaron beside you. Now, I don't know if you want to describe Aaron? I know you do a lot of consulting work together. Do you have a description for him?
Barb Goode 3:13
Not other than we have the same birthday, he's three years younger, and has more gray hair than I do.
Al Etmanski 3:22
(Laughs) What's your secret? Now, I think there's something else about the two of you that people may not know that I discovered, it’s that you taught Aaron's son that it was okay to have ice cream for dinner as a main course. Not for dessert, but as the main course. Is that true?
Barb Goode 3:43
Yes, it's true.
Al Etmanski 3:44
(Laughs) Okay, oh my goodness.
Aaron Johannes 3:48
A big parenting lesson.
Al Etmanski 3:50
Yeah. So maybe Aaron’s actually here because he wants to keep his eye on you. Barb, I wanted to get to some of the work that you've done, and that you're still doing, because you've accomplished so much. Before I do that, I'd like people to get to know you a little bit better. You've heard how I described you, but how would you describe yourself? If somebody asked you, “Can you describe yourself in a couple of sentences?” What would you say? What would you like people to know about you?
Barb Goode 4:23
I’m as independent as I can be but with the pandemic it’s been more difficult to be independent. I like to be able to help people as much as I can. That’s about it.
Al Etmanski 4:46
Okay. In your memoir, you talk about growing up and about your mom and your dad. I think you had a very special relationship with your dad and your book is full of recipes as well. Were you a family that cooked a lot together or are these just memories that come forward through food?
Barb Goode 5:05
I remember very clearly that dad would do more cooking than mom because she wasn't well half the time. Mom was having some health issues. In her later years, she was put in a kind of nursing home. I can remember that I would spend an hour each way to go and visit her from Burnaby to North Van. I remember very clearly on Sunday’s or Saturday’s I would go over to see dad. We had constant talk all the time. I can remember him saying to me that he wanted to make his specialty. He had a bread maker, and he would make hamburger buns. And we would make turkey burgers and if they weren't the right size, he would take my hand and go, “This is the way you do it.” I have that memory and the recipe is in my book. I can remember him very clearly doing that and through cooking, we became very close after mum left. It just gets me emotional sometimes, but I could talk to him about almost anything.
Al Etmanski 6:58
Barb, as we're going through this conversation, we're going to be using terminology that some people may not be familiar with, for example, self-advocacy. We use that word all the time, or those two words all the time, but not everybody does. Can you describe what self-advocacy is? What would you want the average person to know about self-advocacy?
Barb Goode 7:22
That's not an easy explanation. I guess someone that has a learning disability. I know other self-advocates that may explain it one way, and you could talk to say, Joe Smith down the street and he might say it differently. In my mind that's fine. We're all people, and we're all trying to do the same thing. For me, it's someone with a learning disability and someone who has been talking for themselves and trying to educate people and help themselves.
Al Etmanski 8:08
Okay. In your book, you said that self-advocates are people who speak for themselves and who fight for their rights. Would you add that section around the rights and fighting for them? Is that part of what being a self-advocate is?
Barb Goode 8:26
I guess so, but I mean, fight, and understanding that we have these rights like everybody else, but sometimes we have to, I guess learn more about them than… I mean, I’m not.. I guess learning how to be…maybe come back to that one.
Al Etmanski 8:52
Well, I think you're making your point and I may have used the wrong word by using the word fight because I've been re-reading your book in preparation for this interview. In your book you said you don't see yourself as a militant, so I can understand why when I used the word fight, that I was suggesting that. What you did say, though, is that you believe in equal rights for everyone, and that if people with disabilities don't stand up for their rights, no one else will. I think that's what I heard you getting at here, and maybe why you were a little cautious about associating that with the word fight. Did I kind of get in there?
Barb Goode 9:35
A little. I think that everybody is learning how to speak up for themselves, but you have to understand the issue before you can say anything.
Al Etmanski 9:49
Yeah. Excellent. So that's what I wanted to talk to you about. I don't think you invented this term. But I certainly feel like you're the number one ambassador for it, which is “Label jars, not people.”
Barb Goode 10:06
Not people, yeah.
Al Etmanski 10:08
Can you explain that a little bit more? Because I just heard you tell me that pretty clearly, “Stop fussing around those labels, Al. We're just people.”
Barb Goode 10:16
But why do people say… We're all people. We're all trying to get by. Like, you’re a man. Aaron's a man. I'm a woman. That's a label. When people say the R-word, I just go to myself, “What are you talking about? You're a label too.” I don't know if that makes sense, but…
[NOTE: the “R” word refers to a derogatory term that used to be used to describe people with a developmental or intellectual disability. While not as common today, it is still being used, and it is still hurtful.]
Al Etmanski 10:40
Well, I wanted to go then to another area that you're well known for, and that I described you as—The Queen of Plain Language. Now, some of the listeners are not from Canada, so they might not use the Royal term for that, but I certainly think that the plain language movement began with people like you, and that it's actually gone into the legal profession as well. It's impacted lawyers. So, any of you listening, who now receive documents from lawyers that you can actually understand, that's plain language. That started with the work that you began quite a long time ago, Barb, and I know you feel very, very strongly about plain language. Why is that important?
Barb Goode 11:35
Do you have all day?
Al Etmanski 11:37
I do. I do.
Barb Goode 11:40
I think one of the reasons is that I think words are very powerful. If we use complicated words, you're going to leave people out of conversations. If someone is talking in a complicated way, the person might shut down. If people do two copies of something, say, one in plain language and one complicated language, why do two copies when you could just start off with one so everybody could read it?
Like, I have plenty of books, and people think that I read them, and I just like them because I like the title of it and I like to be able to understand it, but I don't understand half of them. That doesn't mean I can’t have them around for my enjoyment, or for other people to enjoy.
Al Etmanski 12:54
Barb, thank you for describing this passion of yours around plain language and all of the important things.
Aaron Johannes 13:02
The other day when you were talking about plain language to that group, you were talking about it as a kind of entryway into a different way of seeing everything, everything in the world. I thought that was pretty interesting. Like, if we have to stop and think about different ways to communicate, and there was a lot of agreement that your way was better, that we're all just pretending to understand what we're talking about, and to actually do that authentically. I guess if you continue, the next book for The Next Chapter Book Club in Vancouver, you will get to be part of picking that. I know that they went through a pretty big process of getting people to make suggestions around which book, and they involve librarians. It's a really interesting book club, because prior to everybody going online, one of the things that has to happen in The Next Chapter Book Club is they have to read in public. You have to go somewhere public and read together to be perceived as people with ideas who can communicate those ideas. Right? So yeah…
Al Etmanski 14:15
Barb, from what Aaron has said, does that remind you of anything else you'd like to say about plain language?
Barb Goode 14:23
Not right now, no.
Al Etmanski 14:26
Okay. Barb, I'd like to talk a little bit about your involvement in a very famous court case, the case of Eve. I know when I was interviewing you for my book, I thought that the achievement you'd be the most proud of would be going to the United Nations, and you said, “Not at all, what I'm really much more proud of is my involvement with People First and intervening in the Supreme Court of Canada to protect a young woman whose name for the court case became Eve.” Can you tell us a little bit about that case?
Barb Goode 15:06
That's a hard one because of knowing where to start… CAMR, or CACL, the Canadian Association for the Mighty Remarkable or the Canadian Association for Community Living. I was on the board of CACL at the time. Do you remember Dave Vickers, a lawyer?
Al Etmanski 15:46
Barb Goode 15:47
He and I were on the board in BC. I think someone from P.E.I. but not the mother, I think it was a friend of hers that was on the board of CACL at the time. She told us all about Eve’s mother wanting to take her to court and get her daughter sterilized. What's the court before? The mother wanted to take her not to the supreme court, but she wanted to take her… Do you remember, there was something?
Al Etmanski 16:48
I think by the time you and People First and the Canadian Association for Community Living, now called Inclusion Canada got involved, you wanted to support Eve, and prevent her from being sterilized because there was no good medical reason for doing that. More importantly, you wanted the intervention. You wanted to go to the Supreme Court, as the group of self-advocates, as a group from People First.
Barb Goode 17:25
But I'm sorry, not everybody was involved with People First at the time. It wasn't just People First members. It was people that were on my committee. The Consumer Advisory Committee. In my mind, the CACL were parents and other people, and they didn't feel they could do anything. They were agreeing with the mother.
Al Etmanski 18:08
Yeah. So, this was a big departure I would say, where you had to step up as self-advocates and challenge the board of CACL and challenge parents and say, “Wait a minute here. We can't sterilize people for no good reason.” I think you told me once that you were roughly the same age as this woman who was called Eve, and that you realized that if you weren't careful, the same thing could happen to you. So, you decided to take the lead here with your Consumer Advisory Committee. Do I have that right?
Barb Goode 18:49
You do. The other thing is that there was one member on the committee, he was sterilized without his consent at an institution in Alberta. So, that gave me more reason to do it, but there was other people too. He and I, and one other person were on the committee the whole time that we were talking about this. It didn't take just six months or seven, it took a long time to get to court.
Al Etmanski 19:23
Do you remember how long that was in total? It was years, wasn't it?
Barb Goode 19:27
Yeah, a long time.
Al Etmanski 19:29
Long time. Somewhere in the neighborhood of seven to nine years, I think, from beginning to end.
Barb Goode 19:36
I think we talked about it a lot as a committee, and it took a long time to get to the Supreme Court. I might be fuzzy about that part.
Al Etmanski 19:49
The actual time is not important. It just was a long time, but you were able to keep going. What gave you the strength to keep going through that long period?
Barb Goode 20:01
I don't know if it was the same back then, but I think looking back on it, it was because we felt that we needed to do something for Eve. You know, not to have her sterilized or have something done to her that she doesn’t have a clue about.
Al Etmanski 20:23
So, can you tell us what the final result was?
Barb Goode 20:28
That no one should be sterilized without their consent. I think it's changed over years. I think that if it’s for medical reasons, it’s different, but I’m not sure.
Al Etmanski 20:42
So, this decision of the Supreme Court was unanimous. All nine Justices of the Supreme Court of Canada agreed with you, Barb, and your friends and colleagues on the Consumer Advisory Committee, that Eve and any other adult with a learning disability or an intellectual disability cannot be sterilized without their consent, unless there is a good medical reason.
Barb Goode 21:13
But I think people are still being sterilized without their consent.
Al Etmanski 21:19
So it's still a worry, even though we have the law. I know that later on, this decision of the Supreme Court of Canada, went to the United Nations. So, when the UN established their convention on the rights of people with disabilities, they included the decision of the Supreme Court of Canada in their convention. How did that make you feel?
Barb Goode 21:52
Sorry, I don't remember that.
Al Etmanski 21:54
Okay. This Eve case was a real milestone because it was the first time ever that people with learning disabilities took a case to the Supreme Court of Canada. I know in your book that you said that if people with disabilities don't stand up for their rights, no one else will. So, it's a kind of example, a really great example of why that's important. Do you still feel good about that?
Barb Goode 22:27
Yeah. Yeah. That's the proudest thing I've ever done.
Aaron Johannes 22:31
One of the things that you often talk about is that after that went public, because it was also the first time that people with disabilities were seen in a public space. Once that happened, people found out how many sterilizations had happened, and how many things that they thought they were getting tonsillitis, or something else, and they ended up sterilized. Leilani Muir is one of the things you talk about—her book. That was as hard as any of the rest of it, it was that suddenly you had this whole population of people who had been sterilized without even knowing it until they started checking, right? The other thing that I always think is really interesting when you tell these stories is that it sounds like the Supreme Court invited people with disabilities to come and present. It was actually a really arduous process, they had to go in the back door, it was a narrow pathway, and people were in wheelchairs that toppled over. They couldn't get up into the Supreme Court without going into the freight elevator, which had this big sign that said, “Elevator for use only for freight and people with disabilities.” Once they got into the room, they had to stand in the dark in the back. Sometimes this gets presented as a proud moment, but it was such a hard process.
Al Etmanski 24:08
Barb, I just have a couple more questions for you. Thank you for doing this for me. I want to step back from what we've just been talking about, and get some final thoughts from you on what's going on in the world today. I'm curious, because I think a lot of people see you as an elder, as a very wise person who has something to say about the way the world works and the way the world could work. I just wanted to ask you, what's your hope for the future? Do you have a dream that you would like to see appear?
Aaron Johannes 24:29
She wants to support young people like myself.
Barb Goode 24:54
I think that the thing that I’ve really missed is meeting like this in-person. It's fine and dandy to do it on zoom. I mean, by the time this is all over, we'll be amazed at how well we're doing on zoom, but I could do without it. I have my ways of communicating with people. I don't need Zoom. It gets frustrating having to learn all about different things that my mind can't compute all the time and I get mad at myself. I get blocked. It’s just day to day things sometimes trying to remember, “Oh we didn't do this, why didn't you do this, and why are we doing this now?” I get so mad at myself. I want to do things—it's my health, it’s the COVID, it's a lot of things. I don't know if that makes sense, but for me right now, I just get so frustrated.
Al Etmanski 26:21
Yeah. Do you listen to or watch the news at all?
Barb Goode 26:26
No, because that gets me more upset. People tell me stuff that's happening and I'm going to myself, “Why do I need to know that?” It is day 41 of COVID. I could have told you that. Even without the COVID I don't watch the news much. It really upsets me so I don't listen to it.
Al Etmanski 26:51
Okay. Here's my last question to you then, what would you tell a young person who's starting out in high school, and who has some kind of a disability? Do you have some advice for them?
Barb Goode 27:05
Do what you want to do. Don't let people put barriers in the way. Talk to someone about it. I'd be willing to talk to young people and tell them, “Don't just go to people that aren't disabled, talk to people who have been through it.”
Al Etmanski 27:26
Thank you. One of the things I heard you say once in your life is that what you're the proudest of doing is things that people didn't think you could do, that that kind of summed up your life, that “I did things that people didn't think I could do,” but I know. You did it your way. I think there's a song about that. Was that written about you?
Barb, you not only have done things, your own way, that people didn't think you could do, but you are still doing things your way. I'm very happy that I had the chance to talk with you and share a little bit about you.
Barb, thank you for joining us today. On our website, we will have details about how to get ahold of you, information about how to get your book, and how to book you to be a speaker or an advisor to maybe do the kind of consulting that you do with your partner, Aaron. I understand that you definitely expect your work to be properly compensated, and that all people with disabilities should be paid for what they do just like every other consultant. We will make sure we have that information on the website.
Barb Goode 28:54
Alex Abahmed 29:05
This has been the six part of The Power of Disability a special six part series of the Below the Radar podcast. The series is curated and hosted by the community organizer, social entrepreneur and author Al Etmanski. Theme music for The Power of Disability is “There is Nothing Wrong with Me, Epilepsy by Todd Oseki. The production of the series is supported by SFU's Vancity Office of Community Engagement.
[music, singing: “Disease, disorder, what can it be? There’s no need for sympathy. Disease, disorder, epilepsy. There is nothing wrong with me.]