ABOUT THIS EPISODE
Season 03, Episode 05
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Wayne Connell
INTRO [Music playing in background]
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VOICEOVER: Disabled Lives Matter. Here we go.
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VOICEOVER: Hello,
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VOICEOVER: and welcome to this week's episode of the Disabled Lives Matter podcast.
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VOICEOVER: Let's welcome co-hosts Nadine Vogel and Norma Stanley.
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NADINE VOGEL: Hello and welcome everyone,
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NADINE VOGEL: to another fabulous episode of Disabled Lives Matter.
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NADINE VOGEL: We are more than a podcast. We are a movement. This is Nadine Vogel,
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NADINE VOGEL: one of your hosts, and I am joined by my fabulous co-host, Norma Stanley.
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NORMA STANLEY: Hello everybody.
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NADINE VOGEL: And Norma, you just got back from a wonderful vacation, didn't you?
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NORMA STANLEY: Yes, I was in Tanzania, Africa, and it was amazing.
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NORMA STANLEY: I'm so thankful that I had a chance to go,
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NORMA STANLEY: but I'm so excited to be back and back on Disabled Lives Matter.
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NADINE VOGEL: Absolutely. So we are joined today, should I say,
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NADINE VOGEL: by the infamous Wayne Connell. Um,
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NADINE VOGEL: he is, uh, with Invisible Disabilities Association. He is not only with them,
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NADINE VOGEL: he is the president and C-E-O and founder.
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NADINE VOGEL: The organization's been around since 1996, so Wayne, welcome.
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WAYNE CONNELL: Oh, well thank you so much, Nadine. I appreciate it.
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NADINE VOGEL: Yeah. So tell us, well,
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NADINE VOGEL: first tell us what is I-D-A and then let's talk about why you founded
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NADINE VOGEL: it.
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WAYNE CONNELL: So, uh, invisible Disabilities Association is a 5 0 1 C three nonprofit. Um,
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WAYNE CONNELL: uh,
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WAYNE CONNELL: founded in 1996 and incorporated as a a a
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WAYNE CONNELL: non, an actual 5 0 1 C three in 2004. Um,
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WAYNE CONNELL: and what we do is we are an awareness education organization, um,
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WAYNE CONNELL: helping people understand invisible disabilities.
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NADINE VOGEL: Okay, great. And, and that's really important.
NORMA STANLEY: Um, very much so.
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NADINE VOGEL: One of the things, I'm just gonna start right outta the gate with,
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NADINE VOGEL: cuz there's always controversial stuff when it comes to disability, right?
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NADINE VOGEL: Is this issue of some people refer to an invisible disability as a hidden
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NADINE VOGEL: disability. And I, I dunno, I, I have a,
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NADINE VOGEL: it doesn't feel right to me for some reason. Right? It just like,
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NADINE VOGEL: like someone's intentionally hiding it.
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NADINE VOGEL: So I'm just wondering if you have any perspective or any thoughts on that.
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WAYNE CONNELL: Well, so how about if I, you know, you mentioned, you know,
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WAYNE CONNELL: why did I start the organization?
NADINE VOGEL: Yeah.
WAYNE CONNELL: Cause I'll kinda tell you about that.
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WAYNE CONNELL: So, really, uh, the, the story is, is that my,
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WAYNE CONNELL: I met my wife and my wife when I met her year before, uh, 1991,
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WAYNE CONNELL: had been diagnosed with primary progressive multiple sclerosis.
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WAYNE CONNELL: And what that really is, is MS with no good days. Right? That's, uh, um,
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WAYNE CONNELL: you know, and so we met, um, I was, you know,
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WAYNE CONNELL: sh why wouldn't I want to marry this gal. She was amazing and funny and all these
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WAYNE CONNELL: other things I didn't even think about disability, had no, you know,
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WAYNE CONNELL: didn't think about it all. She was unable to work,
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WAYNE CONNELL: had a couple college degrees and in the prime of her life at 27, you know, uh,
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WAYNE CONNELL: been struck down by this illness. So, um, when we met,
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WAYNE CONNELL: she was also diagnosed with Lyme disease from a tick bite. And, um,
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WAYNE CONNELL: we can trace that back to when she was 14. Um, and she had been sick on and off,
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WAYNE CONNELL: but doing musical theater and acting and all this crazy stuff and sick as well,
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WAYNE CONNELL: right?
NADINE VOGEL: Um.
WAYNE CONNELL: you know, just to really pushing through,
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WAYNE CONNELL: but finally caught up to her. Um, but in, I,
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WAYNE CONNELL: after we got married in 94 and in 96,
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WAYNE CONNELL: she coined the phrase invisible disabilities.
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WAYNE CONNELL: And the reason why she coined that phrase is we'd park in accessible parking and
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WAYNE CONNELL: people would scream at us. They're like, you're not disabled.
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WAYNE CONNELL: You're not in a wheelchair, or you're not a senior, or whatever. They would,
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WAYNE CONNELL: yeah, they would just get angry. And if you really understand that it's a,
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WAYNE CONNELL: it's really an anger because they want the right person to park there.
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WAYNE CONNELL: And so my wife had written some little pamphlets, um,
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WAYNE CONNELL: and one of her pamphlets she had written,
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WAYNE CONNELL: cuz friends and family would always ask her, what's multiple sclerosis?
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WAYNE CONNELL: So she wrote, she wrote one about multiple sclerosis, you know what,
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WAYNE CONNELL: and so she wrote one called Don't Judge by Appearances.
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WAYNE CONNELL: And at the end of the pamphlet, I really like what it says at the end. It says,
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WAYNE CONNELL: the person standing in front of you, um, uh,
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WAYNE CONNELL: you know, excuse. Yeah. So the, it really is about that,
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WAYNE CONNELL: that the person that has the right to park here may be standing in front of you,
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WAYNE CONNELL: right? So they have the right to park there, but we, you made,
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WAYNE CONNELL: they made it look like they don't.
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WAYNE CONNELL: And so that's why invisible disabilities was really kind of key.
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WAYNE CONNELL: And what we really define it as, it's, it's really the symptoms of an illness,
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WAYNE CONNELL: right? So it's, it's pain, fatigue, dizziness, cognitive dysfunctions,
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WAYNE CONNELL: brain injuries, learning disorders, you know, mental health,
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WAYNE CONNELL: all these different things that you can't see. Um,
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WAYNE CONNELL: a lot of illnesses or disabilities may manifest themselves visibly,
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WAYNE CONNELL: where you maybe persons in a wheelchair or maybe you see they have a limp or,
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WAYNE CONNELL: you know, um, you see some physical acting out or whatever it is,
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WAYNE CONNELL: it's causing something that we can see.
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WAYNE CONNELL: But it's those invisible things that people don't believe and don't understand.
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WAYNE CONNELL: Um, and we use the term disability for a reason. It's a real, it really is a,
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WAYNE CONNELL: it's a technical definition, right?
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WAYNE CONNELL: Says definition of you're some part of your life is impaired, right? I mean,
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WAYNE CONNELL: think about it. When we wear glasses, um, we have an impairment of our vision,
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WAYNE CONNELL: right? People don't think about that, right? And so we don't use it as like,
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WAYNE CONNELL: it's this negative term. If you have a disability, oh,
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WAYNE CONNELL: you're this second class citizen. Although society does do that,
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WAYNE CONNELL: but we don't do that.
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WAYNE CONNELL: That's what we're goal is an organization to bring awareness to that. Um,
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WAYNE CONNELL: but it's those invisible things that people don't get, they don't understand.
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WAYNE CONNELL: So when you use terms like hidden or things like that, right? Um,
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WAYNE CONNELL: we're not trying to hide anything. In fact, our,
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WAYNE CONNELL: our vision statement of our organization is that people would be invisible no
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WAYNE CONNELL: more. And we would treat everybody the same. Right?
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WAYNE CONNELL: I always say the most abnormal people or people climb Mount Everest or run
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WAYNE CONNELL: Ironman triathlons, right? I mean, the rest of us are,
NADINE VOGEL: I'm with you. Yeah.
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WAYNE CONNELL: Seriously. Uh, you know, but you know, it, it's,
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WAYNE CONNELL: it's not a definition of normal or not normal.
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WAYNE CONNELL: It's that we should treat everybody the same.
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WAYNE CONNELL: And a lot of times with use of an assistive device,
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WAYNE CONNELL: which may be glasses or maybe a cane or maybe medicine, um,
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WAYNE CONNELL: that people are able to accomplish things they couldn't do before, right.
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WAYNE CONNELL: Because of their disability. So that's really what it is about, is that, um, uh,
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WAYNE CONNELL: words are really important. And in fact, I want to clarify the word, uh,
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WAYNE CONNELL: disabled versus disability, right? Yeah.
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WAYNE CONNELL: This is a whole big thing is that disability is, you know,
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WAYNE CONNELL: somebody has something that's impacting them.
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WAYNE CONNELL: Disabled means that they're unable to do major life functions like work, right?
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NADINE VOGEL: Mm-hmm.
WAYNE CONNELL: They're unable to do those things. And what's happened is,
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WAYNE CONNELL: in societies we've said, we've, we've actually labeled people say, oh,
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WAYNE CONNELL: you're disabled. Well, those are people that may be in a wheelchair,
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WAYNE CONNELL: but they're, you know, they can go, I'm in Colorado, they go skiing,
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WAYNE CONNELL: they do sled hockey, they play rugby, they're all in a wheelchair, right? Um,
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WAYNE CONNELL: they're, they're not disabled. They have a disability.
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WAYNE CONNELL: And so we wanna be real clear on that.
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WAYNE CONNELL: And that's why you see the term disabled and they capitalize the A and stuff.
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NADINE VOGEL: Mm-hmm.
WAYNE CONNELL: Well, the problem is, is that there are people that are unable.
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WAYNE CONNELL: So you can't label one or the other. You just use the term as what it is.
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WAYNE CONNELL: And those people who, who are actually disabled, they're unable to do things,
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WAYNE CONNELL: but that doesn't change their value. Right? That doesn't mean mean oh,
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WAYNE CONNELL: they're not productive. So we don't care about 'em. No.
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WAYNE CONNELL: They're just as valuable as anybody else. Um, you know,
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WAYNE CONNELL: I always say spend 30 min 30 minutes with somebody who's been chronic from
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WAYNE CONNELL: chronic pain for 30 years and your life will be changed.
NADINE VOGEL: Oh yeah.
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WAYNE CONNELL: What they do every day just to make it is like it is climbing Mount Everest for
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WAYNE CONNELL: them. Right. And it's amazing, you know, what they're doing. And so that's,
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WAYNE CONNELL: that's why I really want, so, so using terms is very important and yeah,
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WAYNE CONNELL: I don't think people are trying to hide things.
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WAYNE CONNELL: The only reason why anybody would wanna hide anything is because people don't
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WAYNE CONNELL: believe 'em. And that's a problem. And we're about believing people.
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NADINE VOGEL: Right? No, absolutely. And, and I think it,
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NADINE VOGEL: it equates also to this whole issue of person first language versus identity
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NADINE VOGEL: first. You know, I, I have a disability,
WAYNE CONNELL: right?
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NADINE VOGEL: Versus like you said, I'm disabled or, you know,
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NADINE VOGEL: an autistic man versus a man who has autism. I, I that's, that's been coming up.
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NADINE VOGEL: You know, it's interesting. When the A-D-A first started,
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NADINE VOGEL: we moved to person first language appropriately, so,
WAYNE CONNELL: right.
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NADINE VOGEL: But what we're finding, um, and Norma,
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NADINE VOGEL: I think you and I talked about this just recently, is that
NORMA STANLEY: absolutely,
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NADINE VOGEL: we're finding some of the millennials, um, and then certain communities,
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NADINE VOGEL: deaf community,
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NADINE VOGEL: autistic community are starting to go back to or have an interest in identity
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NADINE VOGEL: first.
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NADINE VOGEL: And so I'm wondering if you have any thoughts on that as it relates to invisible
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NADINE VOGEL: disability.
WAYNE CONNELL: Well,
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WAYNE CONNELL: It is part of your identity in the sense of it what makes you who you are,
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WAYNE CONNELL: right? You have blue eyes, you know, have a disability, right?
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WAYNE CONNELL: In some sense it does. You know, you think of actors who, um,
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WAYNE CONNELL: some great actors who might, you know, live a depression, right?
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WAYNE CONNELL: And it makes them this incredible actor because it's part of who they are.
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WAYNE CONNELL: So you can't separate it out. Um,
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WAYNE CONNELL: but it doesn't mean that we have to label people and say, oh, they're this way.
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WAYNE CONNELL: Right? Well, um, autism, what I love about autism in the sense of that,
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WAYNE CONNELL: that they, that they said we're on a spectrum, right?
NADINE VOGEL: Yes.
WAYNE CONNELL: So, so spectrum.
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WAYNE CONNELL: But as a friend of mine who was diagnosed with autism at 55, right?
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WAYNE CONNELL: So not as a child, right? Um, he talks about,
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WAYNE CONNELL: it's not a spectrum like in a linear spectrum, it's actually more of like a, a,
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WAYNE CONNELL: a pie or a circle where it's
NADINE VOGEL: Right.
WAYNE CONNELL: It's all over. You know?
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WAYNE CONNELL: And this is how all disabilities are. Cuz what if you have multiple,
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WAYNE CONNELL: like my wife has, right? You know, people always wanna say, oh,
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WAYNE CONNELL: your wife has ms. Oh, is she in a wheelchair? That's the thing they always ask.
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WAYNE CONNELL: It's like,
NADINE VOGEL: yes,
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NADINE VOGEL: Yes.
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WAYNE CONNELL: But a wheelchair is for somebody who is unable to walk, right?
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WAYNE CONNELL: And so your ms, which is multiple scars on the spine and in the brain,
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WAYNE CONNELL: may not necessarily be impairing your walking as much now.
NADINE VOGEL: Right?
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WAYNE CONNELL: She originally couldn't walk when she was first diagnosed. Um,
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WAYNE CONNELL: but I know if we go anywhere, uh, any long distances, you know, I,
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WAYNE CONNELL: I will push her in a wheelchair. She can't push herself in a wheelchair.
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WAYNE CONNELL: It's just too hard to do. Or she might use a walker,
NADINE VOGEL: right.
WAYNE CONNELL: Or a cane.
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WAYNE CONNELL: But a lot of times if it's a short distance, she doesn't Right. But we, we,
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WAYNE CONNELL: we go immediately to, oh,
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WAYNE CONNELL: she's not in a case she doesn't have a cane or she doesn't have a disability.
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WAYNE CONNELL: Um, and by the way, like some special privilege to have a disability or,
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WAYNE CONNELL: or some special privilege to park close. Let me tell you.
NADINE VOGEL: Right.
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WAYNE CONNELL: Most people with a disability, if they were feeling up to it,
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WAYNE CONNELL: they would rather walk anyways. Right?
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NADINE VOGEL: Absolutely.
WAYNE CONNELL: But
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WAYNE CONNELL: I, I was actually challenged by somebody that said who didn't have a discipline.
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WAYNE CONNELL: They said, but what they said,
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WAYNE CONNELL: what's tough for them is when they go into parking lot and there's a bunch of
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WAYNE CONNELL: accessible spots that are empty.
NADINE VOGEL: Yes.
WAYNE CONNELL: They said, Hey,
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WAYNE CONNELL: if you have the right to park there, please park there so we can get a spot.
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WAYNE CONNELL: Cuz you just took my spot that I can't take yours. Right. And I, I'm like, wow,
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WAYNE CONNELL: I hadn't really thought about that.
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NADINE VOGEL: I hadn't thought of it that way.
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But back to this person centered, um, you know,
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WAYNE CONNELL: the ADA did some great things on accessibility, right?
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WAYNE CONNELL: The wheelchair symbol is an accessibility symbol.
NADINE VOGEL: Right?
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WAYNE CONNELL: I would say the problem is it's become a disability symbol and that's created
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WAYNE CONNELL: this whole dynamics. And that's why invisible disabilities,
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WAYNE CONNELL: and we'll talk about this a little bit later,
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WAYNE CONNELL: what we're doing with our symbol and really making it the symbol of
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WAYNE CONNELL: disabilities. Cuz it's, it's an inclusive symbol,
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WAYNE CONNELL: but really the whole aspect of, originally, if you think about it,
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WAYNE CONNELL: you're in a wheelchair and people, you say, oh,
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WAYNE CONNELL: you must need help or you can't do anything. And so they'd be like, Hey,
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WAYNE CONNELL: I don't wanna be your inspiration. I don't need your help.
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WAYNE CONNELL: I don't need any of those things, which is legitimate, right?
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WAYNE CONNELL: There's a lot of people that don't. Right. You know,
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WAYNE CONNELL: they're doing amazing things. You know, back to Mount Everest. I mean,
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WAYNE CONNELL: think about Eric Rimer who climbed Mount Everest and he's blind, right? I mean,
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WAYNE CONNELL: so it's, it's, it's not, um, what people can do or can't do.
NADINE VOGEL: Yeah.
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WAYNE CONNELL: But one of the things we wanna think about is, is that, um,
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WAYNE CONNELL: there are people nowadays that are like, Hey, I need help. But the problem is,
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WAYNE CONNELL: is we, society has said for 30 years,
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WAYNE CONNELL: people with disabilities don't want your help.
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WAYNE CONNELL: They don't want your pity or whatever. Well, I can tell you what,
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WAYNE CONNELL: when you lose a dream because of you become chronically ill and somebody says
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WAYNE CONNELL: to you, I'm really sorry for your loss, that's okay.
NADINE VOGEL: Yeah.
WAYNE CONNELL: The problem is,
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WAYNE CONNELL: we've tried to say it's not, don't say that to them, you know? Well, it's,
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WAYNE CONNELL: it's a person. Each person's different. Right. So you interact with a person,
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WAYNE CONNELL: and I say, you get to, you gotta get to become a friend first.
NADINE VOGEL: Yep.
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WAYNE CONNELL: Once your friend, then you can interact on it. Right?
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NADINE VOGEL: Absolutely. No, no. A absolutely. So, Norma, I'm just curious, you know,
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NADINE VOGEL: Sierra Norma's daughter uses a wheelchair, so I'm just wondering what, you know,
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NADINE VOGEL: what you are thinking, hearing this? What are your thoughts?
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NORMA STANLEY: Well, you know, that's everything he shared is,
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NORMA STANLEY: is is something that I've definitely experienced.
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NORMA STANLEY: And me having an invisible dis disability myself with the epilepsy. I mean,
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NORMA STANLEY: I can't tell. I never know when a seizure might come on. And by the grace of God,
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NORMA STANLEY: I haven't had one in over four years. But you just never know.
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NORMA STANLEY: Um, and so I, the whole point is, I mean,
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NORMA STANLEY: I think it's really important that people understand that this is something that
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NORMA STANLEY: we still have to educate people on because they do. I've had situations where,
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NORMA STANLEY: um, you know,
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NORMA STANLEY: people have gotten a little testy because I parked right in that dis
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NORMA STANLEY: disability spot.
WAYNE CONNELL: Right.
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NORMA STANLEY: My
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NORMA STANLEY: Daughter, my daughter wasn't necessarily with me.
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NORMA STANLEY: I try not to do that that often, but, you know, I'm a little older and, and,
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NORMA STANLEY: and, you know,
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NORMA STANLEY: because of taking care of her sometimes it has made me not as physically able
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NORMA STANLEY: as I once was. So sometimes I do park there, um,
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NORMA STANLEY: but I don't do it often.
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NORMA STANLEY: But the point is that people shouldn't be judging people without knowing their
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NORMA STANLEY: situations.
NADINE VOGEL: Right.
WAYNE CONNELL: Right.
NADINE VOGEL: We
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NADINE VOGEL: Are a judgmental society.
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NORMA STANLEY: We are.
WAYNE CONNELL: Exactly right. Well,
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WAYNE CONNELL: we wanna rate everybody on a scale of one to five stars. And we wanna say that.
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NORMA STANLEY: Yes.
WAYNE CONNELL: You know, you, you know, um, uh, I mean,
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WAYNE CONNELL: I think about all these rating systems like American Idol and Facebook and
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WAYNE CONNELL: everything, and what they've done to our society is, you know, uh Right.
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WAYNE CONNELL: You put up a picture about something you love. Like, we, we have two goats,
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WAYNE CONNELL: which are actually therapy goats to my wife.
NORMA STANLEY: I wanted
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NORMA STANLEY: To ask you about those goats.
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WAYNE CONNELL: Yeah. They're incredible. They're, they're amazing.
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WAYNE CONNELL: But my wife will put up a picture, one of 'em, and somebody goes, I hate goats.
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WAYNE CONNELL: And we're like, we didn't ask for your opinion. Okay. Sorry. It's like,
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WAYNE CONNELL: you know, but, but you're, you're absolutely right.
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WAYNE CONNELL: We prejudged by what we see in five seconds.
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WAYNE CONNELL: So think about a person walking across, you're, you're pulling into the,
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WAYNE CONNELL: the grocery store and they're walking on the crosswalk and they're rocking real
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WAYNE CONNELL: slow. Okay. And they're not texting. Right. They don't have their phone out. So,
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WAYNE CONNELL: so our first response is, hurry up, I'm trying to get to the store and we're,
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WAYNE CONNELL: we're angry at 'em.
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WAYNE CONNELL: Or it's the person that's driving slow on the highway in the right lane. Right.
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WAYNE CONNELL: And they're driving slow and you're like, oh,
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WAYNE CONNELL: they must be like 90 or something like that. You're thinking,
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WAYNE CONNELL: but the reality is,
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WAYNE CONNELL: is that we don't know by a quick judgment of what they're going through.
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WAYNE CONNELL: I would've no idea that you have epilepsy.
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WAYNE CONNELL: But the reality is for you is you're like, Hey, if I'm having a problem,
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WAYNE CONNELL: I need to be able to get to my car. I need to know where my car is. Right.
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WAYNE CONNELL: You know, those things that we, we forget about why people need to park there,
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WAYNE CONNELL: and as you said is, Hey, let me tell you,
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WAYNE CONNELL: it's just like getting a service animal.
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WAYNE CONNELL: We actually wrote a whole pamphlet about service animals.
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WAYNE CONNELL: They actually almost counsel people not to get 'em,
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WAYNE CONNELL: because you're gonna get ridiculed for having one. People go, well,
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WAYNE CONNELL: I wish I could have my pet in the restaurant. Right,
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NADINE VOGEL: Right.
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WAYNE CONNELL: Or whatever it is.
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WAYNE CONNELL: And they have no idea the ridicule you get for having an some
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WAYNE CONNELL: sort of assistive device. Right. Or, I, I, I remember we went to, uh,
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WAYNE CONNELL: we went to Disneyland, um, when my wife and I were first dating,
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WAYNE CONNELL: and we went with my family, you know,
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WAYNE CONNELL: and we gotta go on the back end of the lines at the time, you know,
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WAYNE CONNELL: we rode Space Mountain twice while my brother,
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WAYNE CONNELL: younger brother was in line with my mom. Right. They were like, oh, you lucky.
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WAYNE CONNELL: It's like, Hey, you know what my wife would say? Yeah. I, she goes,
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WAYNE CONNELL: I would park in the end of the parking lot. You can,
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WAYNE CONNELL: we have a great bumper sticker that says, if you want my parking space,
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WAYNE CONNELL: take my disability with it. Right.
NADINE VOGEL: I
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NADINE VOGEL: Love it.
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WAYNE CONNELL: I mean, the reality is, you know, hey, if you, you know, it's not a joy,
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WAYNE CONNELL: but it's, it's a necessity.
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NADINE VOGEL: Right. Well, and it's interesting too,
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NADINE VOGEL: and I know we need to go to commercial break, but, but before I, before we do,
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NADINE VOGEL: I do wanna say one thing because Norma, you said, you know,
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NADINE VOGEL: now you have epilepsy,
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NADINE VOGEL: you have c you try not to use the accessible spot that often.
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NADINE VOGEL: That that alone speaks to our societal issues of actually
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NADINE VOGEL: feeling guilty for using it.
NORMA STANLEY: Yeah.
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NADINE VOGEL: When you are entitled to it because of your medical issues. Right.
NORMA STANLEY: Yeah.
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NADINE VOGEL: But I think that that really says a lot about exactly everything you're saying,
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NADINE VOGEL: Wayne, is that, you know, judgment and, ugh, I can't speak.
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WAYNE CONNELL: Well, that's why our mission is, uh, you know, it,
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WAYNE CONNELL: it's not going away anytime soon.
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WAYNE CONNELL: I can tell you that we haven't solved society's problems yet,
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WAYNE CONNELL: and it's a long road, but,
NORMA STANLEY: oh boy.
WAYNE CONNELL: But we're in the fight.
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WAYNE CONNELL: 26 years we've been doing this, and we're not, we're not going away.
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NADINE VOGEL: No, no. That is for sure.
NADINE VOGEL: And today we are here with Wayne Cannell,
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NADINE VOGEL: and I do have to apologize publicly. I've been saying his last name wrong,
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NADINE VOGEL: and that's really bad.
WAYNE CONNELL: That's
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WAYNE CONNELL: Okay.
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NADINE VOGEL: Well, but I know you that's even worse, right? So Wayne Connell the,
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NADINE VOGEL: um, invisible Disabilities Association, president, C-E-O, and Founder.
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NADINE VOGEL: So we're having this just fabulous conversation about society and
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NADINE VOGEL: stupidity. I'll just chalk it up to stupidity, uh, and judgment. Right. And,
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NADINE VOGEL: and things like that when it comes to the,
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NADINE VOGEL: especially when it comes to invisible disabilities. Um, so,
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NADINE VOGEL: you know, you mentioned something, uh,
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NADINE VOGEL: Wayne earlier about having an inclusive symbol.
WAYNE CONNELL: Yes.
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NADINE VOGEL: Um, instead of, you know,
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NADINE VOGEL: the wheelchair as always the symbol for disability and, and more so,
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NADINE VOGEL: so that it can be more accessibility. So what, can you talk to us about that
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NADINE VOGEL: A little bit?
WAYNE CONNELL: Yeah. So, so our, our vision has always been,
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WAYNE CONNELL: like we talked about earlier,
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WAYNE CONNELL: the wheelchair symbol is a great symbol for accessibility. You can park here,
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WAYNE CONNELL: here's a restroom you can use. Here's a door you can use.
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WAYNE CONNELL: It really is an accessible symbol. Um,
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WAYNE CONNELL: but 80% of the people that have a disability don't use any assisted device.
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WAYNE CONNELL: Right.
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WAYNE CONNELL: So there's this huge percentage of the population of people with disabilities as
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WAYNE CONNELL: well as chronic illness. Right.
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WAYNE CONNELL: We consider chronic illness and disabilities varies very along those same lines.
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WAYNE CONNELL: Um, 50 50% of Americans have, uh,
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WAYNE CONNELL: at least one chronic illness and disabilities could be 20 to 25% of the
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WAYNE CONNELL: population. I mean, it's a, it's a big number. Um, so, uh, so our symbol, uh,
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WAYNE CONNELL: which is a person, or some people like to say, it's funny, they say it's a,
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WAYNE CONNELL: it's a person with their arm around you, or it's an angel with their wings.
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WAYNE CONNELL: I've heard of, it's a superhero with their cape.
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WAYNE CONNELL: Somebody said it's somebody breaking the tape, you know,
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WAYNE CONNELL: putting their arms back and breaking the tape. But all these different things.
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WAYNE CONNELL: But what's real exciting is, is that, uh,
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WAYNE CONNELL: we first did this in the state of Alaska. It's now in Colorado,
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WAYNE CONNELL: and it's now in Utah as of, uh, October this year where you can actually, um,
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WAYNE CONNELL: uh, um, on your driver's license or a state id,
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WAYNE CONNELL: you can actually apply and get a designated symbol. And it's, the symbol is our,
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WAYNE CONNELL: our symbol of our disability on those driver's license or state IDs.
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WAYNE CONNELL: So that when you are in a situation maybe with law enforcement or, or maybe, uh,
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WAYNE CONNELL: you know, your, your,
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WAYNE CONNELL: your son or daughter has autism and they're at school and they're like, oh,
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WAYNE CONNELL: they're just acting up and they actually have a ID that's got on and say, no,
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WAYNE CONNELL: this is a really legitimate, I have autism. Right.
NADINE VOGEL: Right.
WAYNE CONNELL: So it brings us,
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WAYNE CONNELL: and our, our goal is to do that nationwide. Um,
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WAYNE CONNELL: and around the world we've been talking with, uh,
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WAYNE CONNELL: a lot of the other countries as well about this because it really is a symbol
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WAYNE CONNELL: of, it's, it's a person. Because if you think about it, that's the key. Uh,
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WAYNE CONNELL: you know, um, it's not a, it's not a, uh, a device like a wheelchair.
NADINE VOGEL: Right,
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WAYNE CONNELL: right, right. Um, in fact, some of the states even have a,
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WAYNE CONNELL: have the wheelchair where they're in motion. Yes. You know,
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WAYNE CONNELL: where they're leaning forward. Well, um, a lot of people with, with, uh,
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WAYNE CONNELL: invisible disabilities and chronic illness,
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WAYNE CONNELL: they can't push themselves in a wheelchair. Right. So it just,
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WAYNE CONNELL: all it does is it, it ma, when you use that symbol,
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WAYNE CONNELL: it makes them feel like they're, they're, you know,
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WAYNE CONNELL: they're less than the community. Right. Instead of being part of the community.
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WAYNE CONNELL: And so that's what we're doing with our symbol. Um, we,
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NADINE VOGEL: You had it in three states, you said?
WAYNE CONNELL: Um,
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WAYNE CONNELL: It's in three states right now for sure. Right. Yeah. It's in, uh, Alaska, um,
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WAYNE CONNELL: Colorado, and in, uh, Utah now. Um,
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NADINE VOGEL: So how do you get this into the state?
WAYNE CONNELL: You
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WAYNE CONNELL: Just, when you go to apply for your driver's license or you don't even have,
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WAYNE CONNELL: you can do it in,
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NADINE VOGEL: But how are you guys, how's the organization getting the states to embrace it?
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WAYNE CONNELL: Oh,
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WAYNE CONNELL: Well, it's a lot of work. Well, it's always been our,
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WAYNE CONNELL: our dream to do this. And so, um, uh,
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WAYNE CONNELL: and since we have such a national and recognized symbol,
372
00:19:31.650 --> 00:19:34.650
WAYNE CONNELL: that's one of the reasons why they're doing it. And as an organization,
373
00:19:34.910 --> 00:19:38.370
WAYNE CONNELL: you know, um, we've protected the symbol and it protects the states as well.
374
00:19:38.390 --> 00:19:41.610
WAYNE CONNELL: And that way they're just not picking something randomly or whatever. It's,
375
00:19:41.670 --> 00:19:45.610
WAYNE CONNELL: you know, we want consistency across, uh, it's an easy symbol to read, you know,
376
00:19:45.610 --> 00:19:48.050
WAYNE CONNELL: you can, it's scalable. That's one of the great things about it too.
377
00:19:48.310 --> 00:19:52.330
WAYNE CONNELL: And we even have IDs that you can get through our organ website for anybody.
378
00:19:52.670 --> 00:19:54.650
WAYNE CONNELL: You can order 'em in the US or around the world.
379
00:19:54.710 --> 00:19:58.690
WAYNE CONNELL: And one of the th our dreams is as you, they're, they're on a little placard,
380
00:19:58.710 --> 00:20:00.650
WAYNE CONNELL: you know, that you can put around your, on a,
381
00:20:01.050 --> 00:20:02.650
WAYNE CONNELL: a little chain around your neck or whatever. Right.
382
00:20:02.750 --> 00:20:06.610
WAYNE CONNELL: And so if you walk into a store, um, that is disability friendly,
383
00:20:06.630 --> 00:20:08.730
WAYNE CONNELL: and that would be our goal, is these stores would be educated.
384
00:20:08.730 --> 00:20:11.130
WAYNE CONNELL: They'd have a little sticker, maybe a little thing on their website.
385
00:20:11.390 --> 00:20:14.610
WAYNE CONNELL: As you walk in, the person, the first person that sees you would say,
386
00:20:14.710 --> 00:20:19.050
WAYNE CONNELL: how may I help you? Now you don't have to go find somebody you know,
387
00:20:19.050 --> 00:20:22.930
WAYNE CONNELL: at the back of the store and find a manager and then explain to them why you
388
00:20:22.930 --> 00:20:24.850
WAYNE CONNELL: need help. And they're asking you questions.
389
00:20:24.850 --> 00:20:27.170
WAYNE CONNELL: They probably shouldn't be asking you, what's your disability?
390
00:20:27.310 --> 00:20:28.530
WAYNE CONNELL: Why do you need help? You know,
391
00:20:28.530 --> 00:20:31.090
WAYNE CONNELL: all these things that they don't have really need to know. Um,
392
00:20:31.270 --> 00:20:34.770
WAYNE CONNELL: so that's really our goal is to really educate people to say, Hey, you know,
393
00:20:35.110 --> 00:20:39.890
WAYNE CONNELL: people sometimes need help. Right. And they're afraid to ask for help. You know,
394
00:20:39.890 --> 00:20:42.330
WAYNE CONNELL: we talked about parking, right? We're afraid to park in the parking. Right.
395
00:20:42.330 --> 00:20:45.890
WAYNE CONNELL: Because we're gonna get ridiculed. People gonna write nasty notes on my, uh,
396
00:20:45.890 --> 00:20:49.460
WAYNE CONNELL: that's the only reason why people don't park there, because otherwise you,
397
00:20:49.600 --> 00:20:53.140
WAYNE CONNELL: why wouldn't you park there if you need it? Right. And so, um,
398
00:20:53.280 --> 00:20:56.860
WAYNE CONNELL: that's what we're trying to do is just, just say, bring visibility to it. Right.
399
00:20:57.040 --> 00:21:01.100
WAYNE CONNELL: And the visibility is not a negative thing. And back to what we started Right.
400
00:21:01.100 --> 00:21:04.060
WAYNE CONNELL: Earlier about the whole issue of it is part of your identity.
401
00:21:04.570 --> 00:21:08.860
WAYNE CONNELL: It's not who you are, but it's part of Right. Who you are. Right. And so, um,
402
00:21:09.010 --> 00:21:11.380
WAYNE CONNELL: it's okay because guess what,
403
00:21:11.830 --> 00:21:14.580
WAYNE CONNELL: we're all eventually gonna get some sort of disability or chronic illness
404
00:21:14.700 --> 00:21:17.220
NADINE VOGEL: Absolutely.
WAYNE CONNELL: Which is gonna happen.
NADINE VOGEL: Absolutely.
WAYNE CONNELL: The older we get,
405
00:21:17.220 --> 00:21:19.380
WAYNE CONNELL: it's gonna happen eventually.
WAYNE CONNELL: Right. So, um,
406
00:21:19.560 --> 00:21:21.940
WAYNE CONNELL: we need to understand that that's part of life.
407
00:21:22.160 --> 00:21:25.580
WAYNE CONNELL: We need to treat people with value even if they can't work,
408
00:21:25.580 --> 00:21:29.980
WAYNE CONNELL: as I mentioned earlier. Um, you know, cuz our society's all about productivity.
409
00:21:30.090 --> 00:21:32.900
WAYNE CONNELL: Well, if you're not productive, well that's not right either. Right.
410
00:21:33.290 --> 00:21:37.740
WAYNE CONNELL: Everybody has value. My wife would love to work, but she's unable to work.
411
00:21:37.740 --> 00:21:39.700
WAYNE CONNELL: Right. In fact, we have people say to that, well,
412
00:21:39.700 --> 00:21:42.340
WAYNE CONNELL: you're lucky you don't have to work. You know, I'm like, I'm like,
413
00:21:42.340 --> 00:21:47.300
WAYNE CONNELL: you're lucky that she doesn't, you know, But she would love to. Um,
414
00:21:47.470 --> 00:21:48.340
NADINE VOGEL: Right. So she
415
00:21:48.340 --> 00:21:49.173
WAYNE CONNELL: Doesn't have visibil ability.
416
00:21:49.360 --> 00:21:53.300
NADINE VOGEL: Let me, let me build on that a second if I may. So just cuz you touched on work.
417
00:21:54.080 --> 00:21:58.580
NADINE VOGEL: So in the workplace we have a big issue with folks with
418
00:21:58.650 --> 00:22:03.420
NADINE VOGEL: invisible disabilities feeling comfortable disclosing
419
00:22:03.440 --> 00:22:05.580
NADINE VOGEL: the disability.
WAYNE CONNELL: Right.
NADINE VOGEL: Should they need,
420
00:22:05.580 --> 00:22:10.100
NADINE VOGEL: especially should they need an accommodation of some kind in the workplace.
WAYNE CONNELL: Yes.
421
00:22:10.440 --> 00:22:12.980
NADINE VOGEL: Um, any thoughts? I'm sure you have a lot of thoughts. Well, I'm sure you have a lot of thoughts.
422
00:22:12.980 --> 00:22:13.820
WAYNE CONNELL: This is, this is a,
423
00:22:14.100 --> 00:22:14.933
NADINE VOGEL: I know I have a few minutes.
424
00:22:15.130 --> 00:22:19.620
WAYNE CONNELL: This is a busy area for us, right? Um, this is a busy area for us. Is that, uh,
425
00:22:19.960 --> 00:22:22.220
WAYNE CONNELL: um, yeah. Trying to make it safe in the workplace.
426
00:22:22.680 --> 00:22:25.540
WAYNE CONNELL: And the only way we're gonna do that is just for people to understand that it's
427
00:22:25.760 --> 00:22:29.980
WAYNE CONNELL: normal in the sense for people to have disabilities. And that, um,
428
00:22:30.040 --> 00:22:33.460
WAYNE CONNELL: if a person's working for you and let's say they have bipolar disorder and
429
00:22:33.460 --> 00:22:34.660
WAYNE CONNELL: they've been working for you for four years,
430
00:22:35.280 --> 00:22:37.180
WAYNE CONNELL: why would we think that they're going to,
431
00:22:37.180 --> 00:22:41.980
WAYNE CONNELL: all of a sudden when they disclose it do work different? They're not, in fact,
432
00:22:41.980 --> 00:22:44.380
WAYNE CONNELL: the reason why they're disclosing is cuz they need an accommodation.
433
00:22:44.380 --> 00:22:46.540
WAYNE CONNELL: Like you said, you have to disclose it. Um,
434
00:22:46.720 --> 00:22:50.500
WAYNE CONNELL: and that accommodation will action help 'em to do the work even better. Now,
435
00:22:50.500 --> 00:22:54.900
WAYNE CONNELL: the key is with the workplace is if you can't do the work because of your
436
00:22:54.900 --> 00:22:58.060
WAYNE CONNELL: disability, then you can't do the work.
437
00:22:58.320 --> 00:23:01.660
WAYNE CONNELL: And so I always say it has to be reasonable. Right. And, you know,
438
00:23:01.660 --> 00:23:03.580
WAYNE CONNELL: an unreasonable one would be, you know,
439
00:23:03.580 --> 00:23:06.380
WAYNE CONNELL: your vision impaired and you wanna drive a bus and so they have to hire somebody
440
00:23:06.380 --> 00:23:09.340
WAYNE CONNELL: to drive the bus for you. Right? Okay. That's kind of unreasonable. Right.
441
00:23:10.080 --> 00:23:14.380
WAYNE CONNELL: But most accommodations are reasonable. And so it is going to be a,
442
00:23:14.600 --> 00:23:18.300
WAYNE CONNELL: and and it's, um, uh, when it comes to even in the workplace, you know,
443
00:23:18.300 --> 00:23:19.900
WAYNE CONNELL: when it comes to diversity, equity, and inclusion,
444
00:23:19.990 --> 00:23:21.780
WAYNE CONNELL: disability is normally not thought of very,
445
00:23:21.780 --> 00:23:24.180
WAYNE CONNELL: it's very low percentage of companies. Think about it,
446
00:23:24.250 --> 00:23:25.220
WAYNE CONNELL: it's kind of the last thing.
447
00:23:25.220 --> 00:23:29.340
WAYNE CONNELL: Even though it's the largest minority and of course disabilities, naturally,
448
00:23:29.460 --> 00:23:32.940
D-E-I, because it doesn't, illnesses no respecter of anybody.
449
00:23:32.960 --> 00:23:34.300
WAYNE CONNELL: It doesn't matter who you are,
450
00:23:34.530 --> 00:23:38.060
anybody can have a disability or a chronic illness. Right? So, um,
451
00:23:38.370 --> 00:23:41.300
WAYNE CONNELL: it's gonna take a lot of work and it's great work for like what you guys are
452
00:23:41.300 --> 00:23:45.980
WAYNE CONNELL: doing, Nadine and Norma and stuff. And it's, it is, but it's working together, um,
453
00:23:46.240 --> 00:23:49.500
WAYNE CONNELL: to, to help people just believe. People start believing people.
454
00:23:49.500 --> 00:23:52.100
WAYNE CONNELL: And that's what invisible disabilities does. In fact, our theme this year,
455
00:23:52.100 --> 00:23:55.660
WAYNE CONNELL: we just had our gala recently and Invisible Disabilities Week around the world.
456
00:23:56.200 --> 00:24:00.500
WAYNE CONNELL: Our theme this year for the years is time to believe. And the tagline is,
457
00:24:00.500 --> 00:24:04.700
WAYNE CONNELL: just because you can't see it doesn't mean it's not real. Right.
NADINE VOGEL: Hello.
458
00:24:04.730 --> 00:24:08.060
WAYNE CONNELL: Seriously. And so it's uh, um, and I think it's just,
459
00:24:08.130 --> 00:24:12.500
WAYNE CONNELL: it's continually educating and, um, understanding. Um,
460
00:24:12.600 --> 00:24:13.260
WAYNE CONNELL: and by the way,
461
00:24:13.260 --> 00:24:16.820
WAYNE CONNELL: I don't think people truly are trying to be judgmental in most cases.
462
00:24:17.260 --> 00:24:20.660
WAYNE CONNELL: I think they do, is they don't know what to say. And so, um,
463
00:24:20.840 --> 00:24:23.460
WAYNE CONNELL: that's why we wrote the book. But you look good, you know, book,
464
00:24:23.460 --> 00:24:26.100
NADINE VOGEL: I was just gonna ask you about this, that is about,
NORMA STANLEY: yes, yes,
465
00:24:26.210 --> 00:24:28.940
WAYNE CONNELL: that book is about what to say and what not to say. You know, we,
466
00:24:29.160 --> 00:24:34.140
WAYNE CONNELL: we wrote the first edition in, in, in, um, 1998. Um, you know,
467
00:24:34.140 --> 00:24:34.980
WAYNE CONNELL: it's out there on the,
468
00:24:35.080 --> 00:24:37.620
WAYNE CONNELL: you can get it on Amazon and all those on our website and stuff,
469
00:24:37.620 --> 00:24:40.340
WAYNE CONNELL: but people buy 'em in bulk even because they give 'em out to all their friends
470
00:24:40.340 --> 00:24:43.700
WAYNE CONNELL: and family because they don't know what to say. Invariably they'll say, well,
471
00:24:43.800 --> 00:24:46.500
WAYNE CONNELL: I'm tired too. Or You're tired. What? Well,
472
00:24:46.500 --> 00:24:49.620
WAYNE CONNELL: I went to work and then I went to the zoo and then we went to the theater and
473
00:24:49.620 --> 00:24:52.220
WAYNE CONNELL: then we stayed up late and watch a movie. You're tired from doing things.
474
00:24:52.520 --> 00:24:55.660
WAYNE CONNELL: People with a chronic illness, when they say they're tired, they're,
475
00:24:55.660 --> 00:24:59.460
WAYNE CONNELL: it's bone crushing. They're so exhausted they can't even sleep. And so,
476
00:24:59.720 --> 00:25:01.660
WAYNE CONNELL: but we try to relate, we always wanna relate.
477
00:25:01.760 --> 00:25:06.220
WAYNE CONNELL: The problem is we're not armchair doctors.
NADINE VOGEL: Right.
WAYNE CONNELL: You know, I mean,
478
00:25:06.220 --> 00:25:07.660
WAYNE CONNELL: we wanna think we are, but we're not.
479
00:25:07.880 --> 00:25:12.780
WAYNE CONNELL: And so it really is just educating people to say it's part of life in a sense.
480
00:25:13.030 --> 00:25:16.140
WAYNE CONNELL: Right. You know, um, we, we all could be impacted by it.
481
00:25:16.400 --> 00:25:19.460
WAYNE CONNELL: And if you wanna know something about what somebody's going through, one,
482
00:25:19.680 --> 00:25:22.540
WAYNE CONNELL: listen to them validate what they're going through.
NADINE VOGEL: Right.
WAYNE CONNELL: You know,
483
00:25:22.540 --> 00:25:24.500
WAYNE CONNELL: you probably hear this. They're like, I don't wanna talk to my friend.
484
00:25:24.500 --> 00:25:27.780
WAYNE CONNELL: All I wanna do is talk about their illness. Oh my goodness. How depressed.
485
00:25:27.800 --> 00:25:30.540
WAYNE CONNELL: And then you say, you know what, that's cuz you're not listening to them.
486
00:25:30.640 --> 00:25:33.980
WAYNE CONNELL: If you've listened to them and say, oh my goodness, lupus,
487
00:25:34.380 --> 00:25:36.900
WAYNE CONNELL: I don't know what lupus is. Can you tell me what lupus is?
488
00:25:36.920 --> 00:25:40.260
WAYNE CONNELL: I'd like to learn about lupus. Right. Ask them, they're an expert. You know,
489
00:25:40.380 --> 00:25:41.500
WAYNE CONNELL: I mean, Norma, you're an expert.
490
00:25:41.600 --> 00:25:44.780
WAYNE CONNELL: I'm sure when it comes to your seizure disorders. I mean, you're probably like,
491
00:25:44.840 --> 00:25:47.340
WAYNE CONNELL: oh, you know. Yeah. If somebody actually asked you,
492
00:25:47.440 --> 00:25:50.220
WAYNE CONNELL: can you tell me how it impacts you? And
NORMA STANLEY: Yeah.
WAYNE CONNELL: You know,
493
00:25:50.400 --> 00:25:53.660
WAYNE CONNELL: you would probably be like, oh, I'd love to share with you. Right. Otherwise,
494
00:25:54.000 --> 00:25:55.380
WAYNE CONNELL: you know, you're afraid to share.
495
00:25:55.800 --> 00:25:58.980
WAYNE CONNELL: And so the reason why people sharing is nobody's listening.
496
00:25:59.010 --> 00:26:03.660
WAYNE CONNELL: They're not making accommodations. They don't care. They, you know, and so, um,
497
00:26:03.660 --> 00:26:06.980
WAYNE CONNELL: then everybody keeps it inside. Right.
NADINE VOGEL: Exactly.
WAYNE CONNELL: You know, you know,
498
00:26:06.980 --> 00:26:09.820
WAYNE CONNELL: we think of it this in the veterans community, this is why I believe, you know,
499
00:26:09.820 --> 00:26:13.140
WAYNE CONNELL: you have a huge suicide rate in the veterans community because No,
500
00:26:13.410 --> 00:26:15.980
WAYNE CONNELL: they don't wanna share with anybody. Cuz if they share with somebody,
501
00:26:15.980 --> 00:26:18.260
WAYNE CONNELL: people will think, oh, look at this strapping, you know,
502
00:26:18.580 --> 00:26:21.980
WAYNE CONNELL: military guy and how come he's got, he can't go out in public anymore. Right.
503
00:26:22.400 --> 00:26:26.300
WAYNE CONNELL: You know,
NADINE VOGEL: he suddenly becomes the victim.
WAYNE CONNELL: Well, exactly right. Well,
504
00:26:26.320 --> 00:26:29.300
WAYNE CONNELL: if he had the opportunity to share or she had the opportunity to share and
505
00:26:29.300 --> 00:26:33.260
WAYNE CONNELL: people were listening Yeah. And they say, oh my goodness. You know, wow.
506
00:26:33.600 --> 00:26:36.540
WAYNE CONNELL: How can I help? And if the person says, this is how you can help.
507
00:26:36.920 --> 00:26:39.260
WAYNE CONNELL: The only person with a disability is the only one that can tell you that.
508
00:26:39.640 --> 00:26:41.220
WAYNE CONNELL: We always think we know how to help.
509
00:26:41.480 --> 00:26:44.340
WAYNE CONNELL: And that's what people struggle with originally with the A-D-A. Right.
510
00:26:44.600 --> 00:26:48.420
WAYNE CONNELL: We thought we knew how to help people and we didn't.
NADINE VOGEL: And we
511
00:26:48.420 --> 00:26:49.340
NADINE VOGEL: Still don't. Yeah.
NORMA STANLEY: That's real.
512
00:26:49.840 --> 00:26:50.673
WAYNE CONNELL: And we still don't. Right.
513
00:26:51.240 --> 00:26:52.420
NORMA STANLEY: We and we still don't.
514
00:26:52.690 --> 00:26:54.820
WAYNE CONNELL: Well, you gotta become their friend first. Right.
515
00:26:54.840 --> 00:26:58.980
WAYNE CONNELL: You can't go to the person on the street and tell 'em what you think you have to
516
00:26:58.980 --> 00:27:00.780
WAYNE CONNELL: say, Hey, you know, become their friend first.
517
00:27:01.000 --> 00:27:03.580
WAYNE CONNELL: And then you have the opportunity to ask them, Hey,
518
00:27:03.580 --> 00:27:05.300
WAYNE CONNELL: is there anything I could do to help? You know,
519
00:27:05.300 --> 00:27:09.100
WAYNE CONNELL: can I come over once a month and bring you lunch because I know how hard it is
520
00:27:09.100 --> 00:27:11.020
WAYNE CONNELL: for you to even or do a load of laundry for you.
521
00:27:11.160 --> 00:27:15.860
WAYNE CONNELL: Or I'm going to the store already, can I pick you some stuff up? You know,
522
00:27:15.860 --> 00:27:17.220
WAYNE CONNELL: things easy. Things like that.
523
00:27:18.200 --> 00:27:22.540
NADINE VOGEL: So, go ahead. I'm sorry.
NORMA STANLEY: Well, you know, I, I like, I was, you know,
524
00:27:22.580 --> 00:27:23.300
NORMA STANLEY: I was out of town.
525
00:27:23.300 --> 00:27:25.900
NORMA STANLEY: I was outta the country and my sister was taking care of my daughter for me
526
00:27:25.900 --> 00:27:29.700
NORMA STANLEY: while I was gone. And my daughter's total care.
WAYNE CONNELL: Mm. Sure.
NORMA STANLEY: And you know,
527
00:27:29.770 --> 00:27:34.300
NORMA STANLEY: when I came back and she said, I simply do not know how you do all you do
528
00:27:34.970 --> 00:27:35.803
WAYNE CONNELL: not caregivers
529
00:27:35.940 --> 00:27:40.380
NORMA STANLEY: A child and still be able to function. I said, well, you do what you have to do.
530
00:27:40.640 --> 00:27:41.380
NORMA STANLEY: And to me, well
531
00:27:41.380 --> 00:27:44.580
WAYNE CONNELL: Caregivers is a big part of what we do. Right. It's, it's,
NORMA STANLEY: you just do it.
532
00:27:44.580 --> 00:27:46.820
WAYNE CONNELL: You got first you gotta believe you're a caregiver.
533
00:27:46.930 --> 00:27:49.380
WAYNE CONNELL: That the person has an illness, that's their first step.
534
00:27:49.440 --> 00:27:52.340
WAYNE CONNELL: And that's why the book was written cuz people didn't even believe their family
535
00:27:52.340 --> 00:27:56.820
WAYNE CONNELL: members. Right. But yeah, caregivers are my heroes and, you know,
536
00:27:56.820 --> 00:28:01.220
WAYNE CONNELL: being one for 30, almost 30 years and myself, you know, uh, yeah.
537
00:28:01.220 --> 00:28:04.900
WAYNE CONNELL: It is difficult to, and um, even a lot of times we don't get it. You know,
538
00:28:04.900 --> 00:28:07.820
WAYNE CONNELL: sometimes I'm, I my wife will go, you just never get it.
539
00:28:08.060 --> 00:28:12.180
WAYNE CONNELL: Although she knows I do.
NADINE VOGEL: Right.
WAYNE CONNELL: But there are times where I look at her and go,
540
00:28:12.180 --> 00:28:16.780
WAYNE CONNELL: oh, you know, she can do everything and um, no she can't.
NADINE VOGEL: Right, right, right.
541
00:28:16.780 --> 00:28:20.420
WAYNE CONNELL: And she's on, you know, and so we, it is, it is a difficult thing,
542
00:28:20.420 --> 00:28:22.220
WAYNE CONNELL: but it is working those two together Right.
543
00:28:22.240 --> 00:28:24.020
As a caregiver and understanding and,
544
00:28:24.080 --> 00:28:26.620
WAYNE CONNELL: and giving a caregiver's breaks once in a while. Like,
545
00:28:26.620 --> 00:28:29.180
WAYNE CONNELL: your sister was gave you a break to allow you to go travel.
NORMA STANLEY: It's
546
00:28:29.180 --> 00:28:29.840
NORMA STANLEY: A blessing.
547
00:28:29.840 --> 00:28:34.460
WAYNE CONNELL: Oh my goodness. That's amazing. And so, um, yeah, it, uh,
548
00:28:35.240 --> 00:28:38.740
WAYNE CONNELL: we, we, we've, this is just part of normal society in a sense,
549
00:28:38.960 --> 00:28:42.500
WAYNE CONNELL: but we've made it like people with disabilities are second class or they're
550
00:28:42.520 --> 00:28:44.060
WAYNE CONNELL: lesser.
NADINE VOGEL: Right.
WAYNE CONNELL: Well, think about it,
551
00:28:44.570 --> 00:28:47.980
WAYNE CONNELL: it's like the only minority group where you're called a liar and a faker about
552
00:28:47.980 --> 00:28:51.420
WAYNE CONNELL: it. It's like, seriously, you know, I mean, that's horrible.
553
00:28:52.180 --> 00:28:55.860
WAYNE CONNELL: Somebody shares with you story and you go, oh, you don't look sick. It's like,
554
00:28:55.890 --> 00:28:57.500
WAYNE CONNELL: well, who asked you?
NADINE VOGEL: Right.
555
00:28:57.700 --> 00:28:58.533
WAYNE CONNELL: I just,
556
00:28:58.540 --> 00:29:01.260
WAYNE CONNELL: I just told you what I'm going through.
NADINE VOGEL: Right.
557
00:29:01.360 --> 00:29:02.900
WAYNE CONNELL: And now you're telling 'em you don't believe me.
558
00:29:03.230 --> 00:29:05.580
NADINE VOGEL: Right. No, it's, it's, it's true. It's,
559
00:29:05.840 --> 00:29:06.940
WAYNE CONNELL: So that's why that
560
00:29:06.940 --> 00:29:08.100
NADINE VOGEL: Much more, that makes it worse.
561
00:29:08.440 --> 00:29:11.780
WAYNE CONNELL: That's why our organization will, like I said, we'll always have a mission.
562
00:29:11.840 --> 00:29:15.860
NADINE VOGEL: You know, invariably somebody will say something really, sometimes it's mean.
563
00:29:15.890 --> 00:29:20.340
NADINE VOGEL: Sometimes it's just un you know, uneducated or unaware.
NADINE VOGEL: Right. Um,
564
00:29:20.440 --> 00:29:23.810
NADINE VOGEL: but we'll always be there. We hear those stories every day.
565
00:29:24.110 --> 00:29:26.730
NADINE VOGEL: And some of 'em are heartbreaking. You know, some of 'em heartbreaking where,
566
00:29:27.270 --> 00:29:31.370
NADINE VOGEL: uh, you know, a wife becomes, uh, disabled after 20 years or,
567
00:29:31.470 --> 00:29:35.610
and the husband says she's just faking it and takes the kids. And the, the,
568
00:29:35.990 --> 00:29:39.170
NADINE VOGEL: the judge says she's faking it and now she's out totally out of everything.
569
00:29:39.170 --> 00:29:42.180
NADINE VOGEL: And we, we hear those stories, you know, um,
570
00:29:42.180 --> 00:29:44.980
NADINE VOGEL: or doctors who are married to doctors and they don't even believe their,
571
00:29:44.980 --> 00:29:48.180
NADINE VOGEL: their family member is, their family member was in a car accident.
572
00:29:48.260 --> 00:29:49.940
NADINE VOGEL: I know a specific one of that. It's like,
573
00:29:50.840 --> 00:29:53.060
NADINE VOGEL: it it's on the news that they were in a car accident.
574
00:29:53.060 --> 00:29:54.860
NADINE VOGEL: This is real what they're going through. Right.
575
00:29:55.310 --> 00:29:58.620
NADINE VOGEL Right. They, they deem it as fake news, which is the whole
NADINE VOGEL: Well,
576
00:29:58.640 --> 00:30:02.900
NADINE VOGEL: And and I'll tell you what, when you value people, um, nobody said it was easy.
577
00:30:02.900 --> 00:30:05.500
NADINE VOGEL: Like you were talking about Norma, I mean, with your daughter. It's not easy.
578
00:30:05.580 --> 00:30:08.100
NADINE VOGEL: I can tell you that, you know, people always say, how can you, you know,
579
00:30:08.100 --> 00:30:11.060
NADINE VOGEL: I've been married, uh, over 28 years. Hey,
580
00:30:11.120 --> 00:30:13.740
NADINE VOGEL: we didn't know it was gonna be this hard even though I signed up for it. Right.
581
00:30:13.900 --> 00:30:17.300
NADINE VOGEL: I mean, I knew when I went into this that, that there was a disability. Right.
582
00:30:17.760 --> 00:30:20.620
NADINE VOGEL: But we didn't know it was gonna be hard. But you know what it is, day to day,
583
00:30:20.620 --> 00:30:22.660
NADINE VOGEL: that's the only way I can make it. It's day-to-day.
584
00:30:22.880 --> 00:30:27.260
NADINE VOGEL: And it's doing things like this. Hope is when you hope is not about a cure.
585
00:30:27.810 --> 00:30:31.140
NADINE VOGEL: Hope is when we can share with each other how we make it through each day.
586
00:30:31.150 --> 00:30:33.300
NADINE VOGEL: Right?
NORMA STANLEY: Absolutely.
NADINE VOGEL: That's what hope is. You know,
587
00:30:33.300 --> 00:30:36.740
NADINE VOGEL: hope is that people will believe me, people will care about me.
588
00:30:36.740 --> 00:30:39.660
NADINE VOGEL: People won't abandon me. You know, if you think about that.
589
00:30:39.660 --> 00:30:41.300
NADINE VOGEL: Cause that's what happens, right? We stop calling
590
00:30:41.500 --> 00:30:44.420
WAYNE CONNELL: E
NORMA STANLEY: and encourage each other to keep moving and, and
WAYNE CONNELL: yeah.
591
00:30:44.610 --> 00:30:48.420
NADINE VOGEL: It's a day-to-day thing, right? And, and so, um, yeah.
592
00:30:48.930 --> 00:30:53.580
NADINE VOGEL: Yeah. It's, it's really important. So as we are running out of time, um,
593
00:30:53.720 --> 00:30:58.380
NADINE VOGEL: sad to say what two things. One, what's next for the organization?
594
00:30:58.800 --> 00:31:01.020
NADINE VOGEL: You know, is something big, something exciting?
595
00:31:01.240 --> 00:31:03.860
NADINE VOGEL: Is it just we're gonna keep on trucking, keep on doing what we're doing?
596
00:31:04.200 --> 00:31:05.033
NADINE VOGEL: So what's next?
597
00:31:05.080 --> 00:31:09.180
NADINE VOGEL: And then I absolutely want you to share how folks can get in touch with you and
598
00:31:09.180 --> 00:31:12.780
NADINE VOGEL: the organization.
WAYNE CONNELL: Sure.
NADINE VOGEL: Um, because, you know, as you were talking about,
599
00:31:13.240 --> 00:31:15.540
NADINE VOGEL: you know, the, the states that have embraced the,
600
00:31:15.600 --> 00:31:18.340
NADINE VOGEL: the image for like the license and things, I'm like, well,
601
00:31:18.340 --> 00:31:22.540
NADINE VOGEL: maybe there'll be someone listening who's from another state who'll say, yes,
602
00:31:22.710 --> 00:31:26.180
NADINE VOGEL: let's do it. Um, so yeah. So share both of those please.
603
00:31:26.290 --> 00:31:27.980
WAYNE CONNELL: Well, what's exciting is, you know, obviously right,
604
00:31:27.980 --> 00:31:30.820
WAYNE CONNELL: getting into other states and stuff with the symbol and really bringing that
605
00:31:30.820 --> 00:31:33.780
WAYNE CONNELL: visibility, um, out there. I mean, we're even looking at,
606
00:31:33.780 --> 00:31:37.100
WAYNE CONNELL: in the web three space and other places where, um, you know,
607
00:31:37.120 --> 00:31:40.900
WAYNE CONNELL: or with sports teams, you know, what all areas can that symbol be where people,
608
00:31:40.960 --> 00:31:44.540
WAYNE CONNELL: you know, maybe it's on a different type of id, right? Maybe it's, uh, you know,
609
00:31:44.560 --> 00:31:46.980
WAYNE CONNELL: on a, you buy a ticket somewhere and it's got the symbol on it.
610
00:31:46.980 --> 00:31:49.700
WAYNE CONNELL: So when the person takes the ticket, they go, oh, hey, by the way,
611
00:31:49.700 --> 00:31:52.980
WAYNE CONNELL: these are the resources we have.
NADINE VOGEL: Right.
WAYNE CONNELL: You know, things like that. So it's,
612
00:31:53.250 --> 00:31:57.140
WAYNE CONNELL: it's really, it's really trying to find ways to, uh, to embrace and,
613
00:31:57.160 --> 00:32:00.860
WAYNE CONNELL: and to really get businesses involved, to be disability friendly businesses.
614
00:32:00.860 --> 00:32:04.660
WAYNE CONNELL: Right. And where they can do simple things. We all think it's so hard.
615
00:32:04.660 --> 00:32:07.860
WAYNE CONNELL: And the reason why is cuz we've got laws like ADA and we've got HIPAA
616
00:32:07.910 --> 00:32:11.900
WAYNE CONNELL: we've got all these crazy, these laws which were put in place for good reasons.
617
00:32:12.200 --> 00:32:12.780
WAYNE CONNELL: The problem is,
618
00:32:12.780 --> 00:32:16.140
WAYNE CONNELL: is that we are using them as excuses not to do things in a sense, right.
619
00:32:16.140 --> 00:32:18.300
WAYNE CONNELL: Because we're afraid, we're afraid we're gonna get sued,
620
00:32:18.300 --> 00:32:21.220
WAYNE CONNELL: we're afraid that these, these things are gonna happen. So, um,
621
00:32:21.240 --> 00:32:23.180
WAYNE CONNELL: but we're looking at, like I said, in the web three space, right?
622
00:32:23.180 --> 00:32:26.260
WAYNE CONNELL: So when you're looking at virtual stuff online, you're looking at, you know,
623
00:32:26.260 --> 00:32:27.093
WAYNE CONNELL: in the gaming world,
624
00:32:27.120 --> 00:32:30.140
WAYNE CONNELL: all these places where there are people that are living with disabilities and
625
00:32:30.140 --> 00:32:32.300
WAYNE CONNELL: if, and if they wanna self-disclose, by the way,
626
00:32:32.300 --> 00:32:34.540
WAYNE CONNELL: these symbols are self-disclosed on these driver's license.
627
00:32:34.920 --> 00:32:37.460
WAYNE CONNELL: You don't have to get 'em if you don't want people to know.
NADINE VOGEL: Right? Right.
628
00:32:37.460 --> 00:32:39.980
WAYNE CONNELL: You don't have to get it. But it's not, and that's why it's done that way.
629
00:32:39.980 --> 00:32:42.420
WAYNE CONNELL: In fact, it doesn't tell anybody what the disability is.
630
00:32:42.830 --> 00:32:43.530
NADINE VOGEL: Right.
631
00:32:43.530 --> 00:32:44.620
WAYNE CONNELL: It's for a conversation.
632
00:32:44.720 --> 00:32:47.700
WAYNE CONNELL: And that's what we wanna have is just to strike up a conversation Yeah.
633
00:32:48.040 --> 00:32:50.780
WAYNE CONNELL: For it to be a different conversation than, um, oh,
634
00:32:50.780 --> 00:32:52.940
WAYNE CONNELL: they're slurring their speech. They must be drunk. No, maybe they,
635
00:32:53.010 --> 00:32:56.300
WAYNE CONNELL: from their stroke, they, they slur their speech, right. They're able to drive,
636
00:32:56.760 --> 00:32:59.860
WAYNE CONNELL: but there's a slurred speech issue, you know, aphasia or something like that.
637
00:33:00.000 --> 00:33:02.180
WAYNE CONNELL: So, um, so that's really our,
638
00:33:02.240 --> 00:33:06.300
WAYNE CONNELL: our focus is to continue to figure out how we can do that and to provide, um,
639
00:33:06.380 --> 00:33:07.580
WAYNE CONNELL: podcasts on our own. You know,
640
00:33:07.580 --> 00:33:10.900
WAYNE CONNELL: we do what's called the Invisible Encourage podcast that encourages,
641
00:33:11.060 --> 00:33:14.500
WAYNE CONNELL: I encourage, because we all need encourage in the midst of difficult times. Yes.
642
00:33:14.600 --> 00:33:16.180
WAYNE CONNELL: Um, uh, you know, to get through it.
643
00:33:16.180 --> 00:33:17.540
WAYNE CONNELL: You don't need courage when things are going great.
644
00:33:17.640 --> 00:33:19.460
WAYNE CONNELL: You need courage when things are difficult. So,
645
00:33:19.600 --> 00:33:22.740
WAYNE CONNELL: and it's been real difficult last few years, so we've had lots of courage.
NADINE VOGEL: Yeah,
646
00:33:22.960 --> 00:33:23.760
NADINE VOGEL: For sure.
647
00:33:23.760 --> 00:33:27.100
WAYNE CONNELL: So it really, it's continued to put out great resources in those things. Um,
648
00:33:27.160 --> 00:33:29.540
WAYNE CONNELL: but we are a very small organization and, uh,
649
00:33:29.540 --> 00:33:32.180
WAYNE CONNELL: it takes a lot to fund stuff around the world. Right. So,
650
00:33:32.970 --> 00:33:36.580
WAYNE CONNELL: best ways to get ahold of us obviously would be invisible disabilities.org.
651
00:33:36.710 --> 00:33:40.060
WAYNE CONNELL: We're on all the social media platforms, and if people got, you know,
652
00:33:40.060 --> 00:33:42.220
they've got ideas or they, you know, like you said, they,
653
00:33:42.220 --> 00:33:45.300
WAYNE CONNELL: they got a connection to a congressperson or something. Um, by the way,
654
00:33:45.400 --> 00:33:49.060
WAYNE CONNELL: we do have in the Congress right now, it's called the Disability Id Act of 2022.
655
00:33:49.560 --> 00:33:53.460
WAYNE CONNELL: Um, it's k it's kind of overshadowed by a few other things happening right now.
656
00:33:53.880 --> 00:33:55.460
WAYNE CONNELL: But, um, it, uh, you know,
657
00:33:55.460 --> 00:33:59.100
WAYNE CONNELL: it's in one of the committees and it would provide grant funding to other states
658
00:33:59.160 --> 00:34:01.580
WAYNE CONNELL: to be able to do the same thing that they're doing in these three states.
659
00:34:01.920 --> 00:34:05.180
WAYNE CONNELL: So hope, we're hoping that, that once we get through this political season,
660
00:34:05.180 --> 00:34:08.820
WAYNE CONNELL: that somebody will start looking at the, those bills and we can get it through.
661
00:34:09.170 --> 00:34:12.180
WAYNE CONNELL: It's a no-brainer. Everybody should want to be behind it. So,
662
00:34:13.040 --> 00:34:17.020
WAYNE CONNELL: but you can get it. You can reach as a contact@invisibledisabilities.org.
663
00:34:17.040 --> 00:34:20.500
WAYNE CONNELL: That's the best way to do it. People send us stuff all the time. They're like,
664
00:34:20.840 --> 00:34:23.700
WAYNE CONNELL: you know, news media stuff, or they wanna, you know, they know a,
665
00:34:24.100 --> 00:34:28.300
WAYNE CONNELL: a person that needs some sometimes help. You know, we, we don't, you know,
666
00:34:28.300 --> 00:34:29.780
WAYNE CONNELL: we're not a funding organization.
667
00:34:29.780 --> 00:34:33.980
WAYNE CONNELL: We don't provide legal advice or medical advice. Ok. We're cure of the heart.
668
00:34:33.980 --> 00:34:35.140
WAYNE CONNELL: We go home with you when you're,
669
00:34:35.290 --> 00:34:36.860
WAYNE CONNELL: when you need help with your friends and family.
670
00:34:36.960 --> 00:34:38.940
WAYNE CONNELL: So that's a big thing we love to do. So.
671
00:34:39.530 --> 00:34:44.020
NADINE VOGEL: Well, we wanna thank you for your heart today. Uh, Norma, this has been amazing,
672
00:34:44.020 --> 00:34:45.060
NADINE VOGEL: hasn't it?
NORMA STANLEY: Yeah. Thank
673
00:34:45.060 --> 00:34:47.860
NORMA STANLEY: You so much. I, I'm looking, I'm gonna look you guys up again.
674
00:34:48.890 --> 00:34:51.220
NADINE VOGEL: It's, it's such a, you know, it's such an important, I mean,
675
00:34:51.220 --> 00:34:54.820
NADINE VOGEL: all the topics that we talk about are important, but it is so impactful to,
676
00:34:54.880 --> 00:34:58.540
NADINE VOGEL: it is so many people. Right. And, you know, for all the reasons that you said,
677
00:34:58.540 --> 00:35:02.680
NADINE VOGEL: Wayne, you know, it's, it's the disabilities we don't see. And,
678
00:35:02.680 --> 00:35:03.320
NADINE VOGEL: and those are the,
679
00:35:03.320 --> 00:35:06.600
NADINE VOGEL: those are the individuals that are getting really hurt in many ways. The most.
680
00:35:06.790 --> 00:35:10.480
NADINE VOGEL: Whether it's because they're working, but not because they were like, you know,
681
00:35:10.480 --> 00:35:13.000
NADINE VOGEL: there's just so many things going on behind the scenes. So,
682
00:35:13.260 --> 00:35:15.160
NADINE VOGEL: and I think one of the things you said, you know,
683
00:35:15.550 --> 00:35:20.120
NADINE VOGEL: just because you don't see it does not mean it's not real.
WAYNE CONNELL: Yep.
684
00:35:20.460 --> 00:35:24.720
NADINE VOGEL: That's, and, and it doesn't matter what it is that is just true. And we,
685
00:35:24.720 --> 00:35:28.920
NADINE VOGEL: and we have to remember that fact. So, um, Wayne Cannell,
686
00:35:29.410 --> 00:35:33.680
NADINE VOGEL: thank you so much. Thank you for the Invisible Disabilities Association.
687
00:35:34.290 --> 00:35:38.260
NADINE VOGEL: Thank Sherry, your wife for, because she's half of this, right? So everything
688
00:35:38.360 --> 00:35:40.500
WAYNE CONNELL: Oh my goodness. Yeah. I couldn't do it without her for sure.
689
00:35:40.920 --> 00:35:42.340
NADINE VOGEL: So thank you. And let's,
690
00:35:42.340 --> 00:35:45.460
NADINE VOGEL: let's give you that email one more time so folks know how to get ahold of you.
691
00:35:45.570 --> 00:35:45.860
WAYNE CONNELL: Yeah.
692
00:35:45.860 --> 00:35:48.500
WAYNE CONNELL: Contact@invisibledisabilities.org.
693
00:35:48.990 --> 00:35:50.180
NADINE VOGEL: Great. So for our,
WAYNE CONNELL: and that's
694
00:35:50.180 --> 00:35:51.013
WAYNE CONNELL: : On the website too, so.
695
00:35:51.120 --> 00:35:54.020
NADINE VOGEL: Oh, good. Okay. So for our listeners, go there, go there now
696
00:35:55.520 --> 00:36:00.460
NADINE VOGEL: go back. Right. Keep going back, Norma. Another great episode.
NORMA STANLEY: Yes, thank you.
697
00:36:00.460 --> 00:36:04.780
NADINE VOGEL: Well, very much. And thank you for our listeners of Disabled Lives Matter.
698
00:36:04.780 --> 00:36:07.420
NADINE VOGEL: Just remember, we're more than a podcast. We are a movement,
699
00:36:07.420 --> 00:36:12.220
NADINE VOGEL: and we will see you next time.
NORMA STANLEY: Be blessed everyone.
WAYNE CONNELL: Thank you.
NADINE VOGEL: Bye.
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700
00:36:16.410 --> 00:36:20.640
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701
00:36:21.100 --> 00:36:24.120
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