Why Agencies Overlook Invisible Disabilities and How You Can Lead the Change

Why Agencies Overlook Invisible Disabilities and How You Can Lead the Change

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Hello dear listeners. Welcome to CareSmartz360 On Air, a Home Care Podcast. I’m Erin Cahill, Account Executive at Caresmartz. Today, we have Wayne Connell on the panel who is a visionary advocate redefining how the world sees invisible disabilities. As founder and CEO of the Invisible Disabilities Association, he

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spent nearly three decades amplifying the voices of those living with illness, pain, and disabilities often unseen. From creating invisible disabilities week to hosting global summits and authoring “But You LOOK Good: How to Encourage and Understand People Living with Illness and Pain”

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Wayne’s mission is simple yet powerful to transform misunderstanding into empathy and silence into awareness. Today we explore how his movement continues changing hearts, homes, and workplaces. Welcome to the podcast, Wayne. Oh, thank you so much. Really happy to

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be here. So, we’ll jump right in. The first question that we have for you is why do agencies often miss invisible disabilities? Well, it really kind of comes down to if you think about what invisible disabilities are, and I really what we really talk about invisible disabilities

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are really that invisible nature of illness that you can’t see. It’s the things that may be visible signs depending on the illness. I mean, it could be fibromyalgia, chronic fatigue, could be MS, Lyme disease, but it could be somebody in a wheelchair who has chronic pain, right?

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It’s that invisible disability is that thing that you can’t see. Um, it’s addictions, phobias, um, a whole bunch of different things that we kind of put in there. Um, as well as a chronic illness, chronic pain, those things. But about 80% of the people that have a disability um, don’t

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use any kind of assisted device on a regular basis. So you wouldn’t know that they actually are living with an invisible disability. And that’s the biggest issue is that we don’t see it with our eyes and so we miss it. And so uh we actually we also there are things that become unbelievable to us too,

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right? And in the things we’re like you mean you can’t do this, you look like you can. Um or what do you mean you’re you know fragrances bother you? That doesn’t make any sense. it doesn’t bother anybody else or whatever those we have these preconceived notions of

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what we see. Um you know I think of even the person in a crosswalk walking slow or driving slow in the slow lane. We have these notions are they 85 years old or why are they walking slow? Um it’s just that real invisible nature that uh um that catches us. Um and

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what’s the one symbol we think of is the wheelchair. And the wheelchair is a visible symbol. It’s an actually it’s an accessible symbol. So um you know IDA invisible disabilities is really trying to lead the way in helping people understand that um what an invisible disabilities,

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right? And how does stigma impact care delivery? Well, one of the big issues is with, you know, if you think about stigma, we use the term invisible disabilities, okay? It’s a technical term, right? And I want to kind of talk a little bit more about that, too, is that uh the

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difference between invisible between a disability and somebody who’s disabled, too, because that’s one of these little stigma things, too, is that, you know, a disability um with an accommodation allows people to do lots of amazing things. I mean, people run

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Iron Man triathlons who have some sort of assisted device, right? and but they have a disability. But disabled is really means you’re unable to do a major life activity and you’re you not able to work anymore. Those things. So people who are disabled have disabilities.

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People with disabilities are not necessarily disabled. But we have we’ve kind of in our society have said, “Oh, they’re disabled.” And then of course then you have the reaction of I’m not disabled. I’m disabled. And they capitalize the A and all this stuff which really creates this kind of

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craziness in that area. And we also have the notion of uh we create new words for everything right you know we create these new words where we say you know you know like with children are special who have developmental disabilities and children are special who have gifted and talented

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supposedly to twice whatever they want to call it but what about the kids in the middle are they special no we need to quit creating words in the sense of so the term invisible display is a technical term that’s first part that’s how you look at stigma um where as

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Well, as you look at this prevalence, as we talked about a little bit ago, is this 80% um you know, 27% of adults in the US have a disability. Um 57% of chronic illness. It’s actually the normal thing to actually have. It’s not the abnormal thing in that sense. And so

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what happens is that’s how we overcome the stigma is that um it’s helping people uh understand that it’s okay to share, right? it’s okay for them to reveal that they have disabled because it’s actually not the uncommon thing, it’s the common thing. As well as I want to say is that

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Disabilities are part of life. So in the sense of not that it defines you and makes you like a lesser person because that’s not what it does, but it’s part of who you are. I mean, you may live in Indiana, have brown hair, and have Crohn’s disease. Okay. Well, that

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Crohn’s disease is part of who you are just as much as being right-handed is, right? It’s that that thing that you have to live your life differently. How does it impact you? I have to look at my diet, how do I eat, you know, how do I deal with doctors, you know, how do I

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get care, those things. And so, um, we want to make it, and this is a big part of invisible disabilities, kind of our mission is to change the way the world sees disabilities, is that to not see disabilities as this negative thing, um, but it’s part of who we are. And maybe

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that’ll allow people to start to share and reveal what they’re living with and then be able to get the care they need, right? I mean, that’s the whole point. Yeah, absolutely. And what subtle signs should caregivers watch out for? Well, um, obviously if somebody shares

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they have a disability and you don’t see them with an assisted device right off the bat, right? Are they using wheelchair? Are they using hearing aids? Are they using things that you can actually see? Um, we need to make sure that we’re not um uh um thinking differently about that. were

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like h you know you don’t look like you have a disability right so because of that I mean we wrote the book but you look good for that reason people would say well but you look good and they disregarded somebody just shared their story and if you don’t believe their

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story more and we’ll kind of talk about that a little bit later too what that looks like but the reality is that the subtle signs are maybe not so subtle somebody’s sharing about it but it doesn’t seem like it makes sense to us but it’s not about us making sense of

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Um, we think about I think about the pain scale, right? The pain scale was developed by doctors and said because doctors couldn’t determine your pain. You can’t see it. I mean, yes, somebody may be grimacing, but for them, the grimacing may be like a three because

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that three is a level of, you know, I think about my wife who has MS and Lyme disease and been disabled for 30 plus years. Um, her pain scale, you know, what a three on her pain scale would be like a 10 on mine, right? So, so she needs this difference. But you can’t

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just go by how people look. Um, you can’t go by how people um uh this is a struggle that people with disabilities, especially invisible, struggle when they go to the doctor. They try to look like they have it all together. They dress up nice. They smile. And then the doctor’s

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like, “Well, doesn’t look like anything’s wrong.” But what they need to do is actually what do they look like every day, right? You need to show up in in pajamas because that’s what you’re in most of the time. then maybe that’s what you need to do, right? And don’t look like

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you have it all together because you don’t. Um, and so that helps that perception too, right? And how can agencies safely encourage disclosure? It’s about developing a relationship. And I know that’s hard in that in an agency’s model, but the reality is you’re going to spend time with a person

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is developing a relationship with them first. And that’s uh um that’s about you know listening to them right um uh you know uh our theme in 2025 here is called see the invisible right so how do you see the invisible well you do it in three ways you listen you

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believe and you support right so first thing is you listen right so you got to take the time to listen right and obviously an agency it’s like that’s their role initially anyways is to get you know what’s going on what are we learning about. So listening, but truly

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listening to what the person’s saying, right? All the things they’re saying. Next step is believing what they share. That’s the hard part, right? Because some things seem incredulous, right? You know, I kind of mentioned it earlier, you know, where people maybe they get

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sick from uh somebody get sick from fragrances and you’re like, well, you know, hey, fragrances, I mean, why would the government allow something out there like fragrances if it makes you sick? We can buy cigarettes still, too, right? I mean, there’s things that that uh we can

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choose to do. Um, and some people are impacted by it. So, we’ve got to think about or maybe somebody’s like, you know, I can’t ride in a car for more than five minutes. I can’t I can’t uh mornings are so tough for me that it takes me four hours to get ready. It’s

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like, really? Come on. No, no. Believe what they say. You have to believe it. No matter how much you don’t think this is what has happened in their life, it’s like the pain scale again, right? It’s you got to believe it. And then the final thing as I say is provide support

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as needed. Right? So if you think about sometimes the believing and listening is what they is that’s the thing they need most of all right that may be a big solving of the just that whole thing but providing that safe encouragement. you develop the relationship first that

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then allows you to step into that next step of listen to them and find out maybe somebody’s got lupus or Lyme disease or something and you’re not an expert in it. They are. So say, “Hey, I’d like to learn more about it. Tell me about it.” You know, I don’t understand

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how does it impact you, you know, in different areas. What how does it impact you in traveling in a car? How does it impact you in your home? How does it impact you with your diet? those things really being sincerely interested in what they’re going through and letting them

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be the expert. That’s the hardest part. I mean, doctors struggle with this, too, right? Health care professionals struggle with this all the time. It’s like they spend 15 minutes with the patient. Patient spends their whole entire life with this. They’re the experts. And with the obviously with the

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internet, you know, and all this amazing stuff where um you know, you can find out whatever you want on it, right? You can be an expert. So that’s what I would say. And Wayne, what policy changes foster inclusion? You know, I think it’s it is back. I want to go back to the really seeing

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this invisible thing. So what what’s a policy change? The policy change is that maybe the intake time is um not just so much about filling out a bunch of forms, right? It’s like tell me your story. you know, I’d like to learn may, you know, um, you know, within reasonable

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what’s acceptable, what they can learn, right? I mean, obviously there’s laws and things like that, HIPPA and ADA and all these other types of laws that come into this place, but if you’re going to care for a person, you’ll learn about them because what you’re going to learn

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about is how does their disability or illness impact their daily lives and how has it impacted them over time, right? has changed maybe over time or things like that and maybe there’s ways that um they need help. You know, I think about um uh back to that kind of

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that notion of uh where we call people disabled who were not. Maybe they were in wheelchairs and we say, “Oh, you’re disabled.” You know, like it’s some big negative thing. And they would say, “Hey, I can do anything you can do.” Right? I mean, I think about it. You

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know, I live in Colorado and you can you can do sled hockey. You can ski, you can do I used to say you couldn’t go upstairs, but now they got cool wheelchairs that go upstairs. They go up in the mountains, you know, with treads and go hike. I mean, all kinds of amazing

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stuff, right? And these people in a lot of cases are saying, I don’t need any help, right? I mean, you know, I can do the all these amazing things. I can work in a wheelchair. I can do all those things. But what happened is we thought, well, that’s how everybody with

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a disability is. They don’t need any help, right? that, you know, um that’s not the case. A lot of people with invisible disabilities actually need help. The problem is they look like they don’t, right? And so there’s this notion of so the story is so critically important to learn about that as

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you’re filling out all these forms about what about this, what about this, what about this. It’s really saying I want to know about you as a person because if I’m going to have a relationship where I’m going to take care of you, I need to know more than just how do you

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help somebody with lupus, right? Do this, this, this, and this. These steps that we’ve learned or how do you deal with anxiety or whatever, right? We it’s really I think those policy changes are as much as it’s difficult you know doctors can’t do this more than 15

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minute thing but I will tell you what um a lot of these people with disabilities who need care they’ve got their life in books they’ve got their they’ve got it all in spreadsheets and all this stuff and maybe it’s like hey send me those I’d like to learn more you know give me

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what I can do to help you better right and most of all how do you need help, not how this is how I think I’m going to give you help. That’s the big thing is the person who has the disability or illness or invisible disability, they’re the ones who are the experts in how they

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need help. And sometimes it may be simple, sometimes it may be complicated, but we really got to understand we can’t just say, “Well, this is how all people with MS need this kind of help, right? We can’t just make judgments because um if you think about it, autism really did

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a great job of saying autism is on a spectrum. All illnesses are on a spectrum and many people have multiples or they have diabetes and maybe they have lupus. And how do those interact? That’s totally different than just somebody with lupus or someone with diabetes. And we can’t

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make assumptions. For example, people say this all the time with my wife. Well, is she in a wheelchair? Well, she was diagnosed with primary progressive MS at the age of 27. So 30 plus years ago, it primary progressive is MS with no good dates. Okay, a wheelchair just defines a person with

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MS is where the lesions are and the impact, but it doesn’t necessarily say the illness is more progressive than it isn’t. So we can’t make decisions on because we see an assist of devices that this must be worse off. We don’t know that, right? Think about glasses, right?

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We don’t know. Do you wear glasses for driving, for reading? That’s a by the way, that’s a disability, right? same type of thing, right? We can’t judge by what we see or hear. So that’s what I would say. The policy changes really have to be the story, right? And my last question for you,

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Wayne. What priority steps should agencies take to lead change? Um, I think taking the reality is taking visible disabilities is it’s real. It’s the biggest edge. Um, it’s the thing that limits people in a sense. you know, kind of go back to this wheelchair thing. You know, if you’re in a

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wheelchair um and maybe um somebody’s a paraplegic and they had lost the use of their legs or they, you know, there was they were injured in war and they had an ampute or something along those lines, but they’re doing amazing stuff. They’re doing iron mans, they’re

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running, they’re doing races, they’re doing all this stuff, but what if they have PTSD? It’s the PTSD that’s the limiting thing. Or what if they have chronic pain? You know, I think about a lot of people with paralysis. They have sometimes they have phantom pain or they

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have other types of pain that um is a totally different thing that’s invisible. That invisible nature. So, we need to think about what are those things that are not visible that would impact the way I give you care, right? That that I that may be the thing I’m focusing on. Yes, I may need be able to,

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you know, have a wheelchair accessible van or something if somebody’s in a wheelchair, right? Or there are other things. For example, boy, one of the things that really gets me is accessible parking spots were are designed for people in wheelchairs, right? So, so there’s curb cutouts, you

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know, there’s markers that go across parking driveways and stuff. The problem is a lot of times you’re not close to the to the store or to the restaurant because of that. Well, a lot of times people with invisible disabilities don’t use a wheelchair on a regular basis. They might use it for

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long distances, like if you go to the amusement park or something where they’re going to be going all day. But in most cases, they don’t use a wheelchair. They might they might have a cane, they might use um a walker, or they might not use anything. And the problem is that the location of the

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spot is so far away that it’s going to be just overwhelming for them, right? So, in that case, it may be, well, let me drop you off at the door instead of parking in the spot, right? Or maybe it’s like um would you like to take the elevator or the stairs? Right now, we

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Think about that. Hey, taking the stairs is healthy, right? Well, a lot of people may not be able to take the stairs or in the age of COVID and things like that. They don’t want to be in an elevator because they have a mute deficiency thing, and they’re got they’re willing to

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Take the stairs, right? So, it’s giving people choices. It’s saying, do you need me to drop you off at the front door? Do you need me to, you know, how can I, you know, um, you don’t use a wheelchair on a regular basis. Do you need a wheelchair because we’re going to?

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go to the mall, right? Do you need a wheelchair, or do you want to use one of the scooters there? Right? You know, it’s that really it’s taking those steps to think about invisible disabilities is extremely important. And the other thing is to say you’re

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valued. You know, we’re all about valuing people. is you’re not lesser because you have a disability. Like I said, back to what I talked about earlier, it’s part of who you are now. Right. Right. It’s the thing that is part of who you are. So, how can I value as a

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person with a disability, right? It’s just part of who you are. So, what can we do? What kind of accommodations we do? What extra care things can I do? What can I do special for you? Right? That step of really saying um uh believing people. I’m going to go back to this the whole thing of listen,

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believe, and support because believing is the one of our biggest things that invisible disabilities is believing people when you can’t see it. Seeing, you know, uh we always think of seeing is believing. Well, not anymore, right? You know what it is? It’s listening is

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believing. Actually, it’s an interesting dynamic change of seeing is not believing. So, listening is believing. I think that that agencies could really take the lead on that by understanding even though we can’t see it, even though it doesn’t make sense, when the person

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says they need care, provide them the care, believe it. And sometimes it’s even hard for insurance companies to understand that and they’re like, well, they really don’t need the care, right? So, it’s going that extra mile to say, yes, you know, it’s important, right? Yeah. Absolutely. No, I love

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that. Um, well, thank you so much, Wayne. We really appreciate your time today. And to all our listeners. We’ll see you next time.