Rebecca Sturgeon: 0:33

Hello and welcome to interdisciplinary Healwell's podcast about people who take care of people, and all the places and perspectives that lift us up. We love science. We love meaningful dissent, and we love to support our fellow humans and making a world that is just equitable, and loving beyond our imaginations. This week, we have another repeat episode for you. This is Cal Cate's and Cathy Ryan's conversation with Kelly Mack. This was originally broadcast in September of 2020. And we hope you enjoy and learn a little something new in the process. Please take a moment to write us a review. Wherever you listen to this podcast, the reviews really help us. It helps other people to find us. It helps us to be more visible to your friends and family and pets and neighbors and anyone who would benefit from this podcast. And if you have a minute, check out our Patreon. We have some super secret squirrel bonus content, including some extended interviews, some special episodes, and lots of interesting stuff in there. So we would love to have you join us there. That's patreon.com/interdisciplinary. So for now, please enjoy this conversation with Kelly Mack.

Cal Cates: 2:00

As you know, we like to start our episodes with a little pun. And last week, I was able to scare up a massage therapy pun, but they're they're running thin. So I thought I'd go I'd go sort of physiological pickup line today. You guys ready? Oh, yeah, baby, you must be a neuron, because you've got some action potential.

Cathy Ryan: 2:25

That's right. So Right.

Cal Cates: 2:29

Ding ding ding. To that end, we have a fancy informed guest joining us today. Kelly Mack, I'm so glad that you are here with us. And I'm, I'm not even going to try to mess up an introduction for you. But I'm so glad that you've decided to join us. And you, you know and can talk circles around us in terms of, I think when I reached out to you, I was hoping that someone could help us better understand what we call the ableist narrative. And really how that fits in or really doesn't fit in to what we do as massage therapists and healthcare providers. So welcome to the show.

Kelly Mack: 3:06

Thank you so much. And thanks for calling me fancy.

Cathy Ryan: 3:11

Extremely fancy. No.

Kelly Mack: 3:15

I should have worn my feather boa. Oh, well, we

Cal Cates: 3:18

just tell everybody you're wearing one.

Cathy Ryan: 3:20

Okay, not too late.

Kelly Mack: 3:22

It's purple. And it's sparkly.

Cal Cates: 3:24

It's i Wow. It's like movie star. Definitely. Nice.

Kelly Mack: 3:31

Well, so, um, I have a bit of a story in that I have had rheumatoid arthritis. Since I was a small child, I was diagnosed at age two. And I had a pretty severe case of it, I Well, I still have it. And I'm now 43. So I've had it for you know, quite quite a minute. And it's resulted in not not just a It's not just a health condition, but I have disabilities because of it that have impacted my mobility, I use a motorized wheelchair, I need to use a lot of assistive equipment and, and just adjust to these changes that have happened over the course of the disease and my life. And but I am a very happy, engaged busy lady with a disability and a chronic illness. So it's all you know, a nice little package.

Cal Cates: 4:40

And so and what do you do for work now? Kelly, you you do things that are related to this conversation?

Kelly Mack: 4:46

I do actually. So I work in communications. I've been a communications professional for a long time. And I work in the health sector. And I am just really passionate about health issues and communicating about them. And also about disability and learning that health and disability are an intersection and they overlap in some places. But in other places. It's it's very different and not the same thing.

Cal Cates: 5:20

Yeah, and I think, you know, one of the things that I want to really make sure we touch on is our, we've had an opportunity in, in recent weeks, for sure, in recent months to do some work around unconscious bias and things like that. And it seems that particularly when we bring this information to people in what are often called sort of the healing professions, there's this sort of automatic response of I love all people, I love all bodies, everyone is beautiful and and it's this very conscious impression management response that's like, I know what I should do. And, and we're unwilling and unable to see a kind of like, we're, it's hard to see privilege, we don't see our biases, and, and I really am hopeful that our listeners will be open to the fact that they are discriminating against people based on their ability or disability, and how you see that in your life. And I know, in reading to prepare for this episode, I was looking at some of the sort of micro aggressions, as they're called, which, you know, I know some people now sort of turn off when they hear that like, it's like, well, yeah, like that, you know, we are we are being rude without knowing it, and we are adding to this problem. So, yeah, I mean, what are the mistakes people make? I mean, I don't even know where to start. There's so many ways that we could just do better.

Cathy Ryan: 6:43

Well, I'm just having a macro aggression towards the concept of a micro aggression. It's interesting. It

Cal Cates: 6:51

is indeed,

Kelly Mack: 6:53

oh, it's hard to know where to start. And I would say that maybe one of the things just to start with is, you know, thinking about what, what do I not know? Or what questions should I be asking? And, you know, how does this person want to be interacted with want to, you know, what should the approach be? And just asking, that's a lot of what I, I want, when I'm, you know, interacting with a doctor or a massage therapist or nurse, is, if you don't? If you're not certain, just ask, and maybe even if you are certain, just ask, you know, don't be so sure that you actually know what you should be doing. Yeah,

Cathy Ryan: 7:47

I think the best time to ask is when you feel really certain.

Cal Cates: 7:52

Truly. Oh,

Kelly Mack: 7:54

I like that. I like that.

Cathy Ryan: 7:58

As a massage therapist, Kelly, I have certain things that will, you know, when I hear them all, just kind of send me off. For you. I mean, are there certain things that you particular to healthcare that are just like, Oh, please?

Kelly Mack: 8:13

Oh, man, there's a bunch of well, meaning, I mean, I can't remember how many times you know, I've been asked, you know, are you married? Do you work, um, you know, basic things that most people would just assume, or, you know, take for granted about other people. And, um, you know, I have a very rich and full life. I've worked full time. And sometimes it's very surprising to people to hear, sometimes it surprises me, it makes me tired. You know, all these things, like I, you know, I have a very, I'm very, very busy. And sometimes it's very surprising to, you know, medical professionals, they're like, why do you know, you, you have all these things going on in your life, and you can't just spend a whole day waiting for me to see you and test you and poke you. Yeah, I, I kind of get get going. So those those are some of the big things the assumption that you know, I don't have things going on in my life, and I can just drop everything to be the guinea pig for whatever reason.

Cal Cates: 10:22

So I feel like this is this is one of these things where it really is about just ask I'm trying to remember when when I first worked with you, Kelly, we work together in my I mean, it was very early in my massage career. And I feel like I kind of got lucky because you are a clear communicator and pretty assertive. And I imagine that it was you actually who made it pretty easy for us to work together. And maybe just because I was so new, I didn't even pretend to know what the heck I was doing. And so we weren't we weren't in each other's way. But I, you know, so I'm imagining many of our listeners sort of saying okay, so someone comes to your practice in a motorized wheelchair. And, you know, one of the things that that I was reading in preparation was, you know that one of the sort of microaggressions is that, as people without a disability, we see a person in a wheelchair, and we assume that they can't not be in a wheelchair, and that many people who use a wheelchair also on some level ambulatory, and so, but as a person who has not used or needed to use a motorized wheelchair, if someone came into my practice, and I didn't know you and didn't have that experience, I might be like, um, what do we do here? And, obviously, it's very different for every person, but my inclination would be tell me how I can best support you getting on the table. Yeah. And then hope that that person feels like, that's an Okay, question. Is there a better way to manage that?

Kelly Mack: 11:49

No, well, I like that a lot. And I think that's why I think we worked so well together was you would ask questions, and you, you know, we're just really open. And I think that's the way to approach it. Because, like you said, I do walk some and I can transfer from my chair. But not everyone can. And also different people have different approaches to transfer or different strengths. Some people who are paraplegic are much stronger in their arms than I am. So it really depends on the condition. And I think the best thing is, is to ask, you know, how can I help? Or do you need help? Or what is the best way to set up the room for your needs? I think, you know, I am proactive. So if I'm making an appointment, I will call and I will say, you know, are you wheelchair accessible, all these kinds of things, and hopefully, most people coming in will, will have that approach, because you don't necessarily know, you know, over the phone or online what their situation is. And I think also, another thing to be open to is just moving things around the room, or just adjusting your setup some if possible, because I'm thinking, you know, my, my wheelchair specifically can get into tight spaces. And I'm pretty good driver, I'll say. But not everyone can do that. And some people need more space than others or turning or what have you. So definitely ask, but you're right, every situation may be different.

Cal Cates: 13:41

Yeah, yeah. And I think like Kathy was saying, like, sort of almost the more experience we get the dumber we get, like, Oh, I've seen this before, I'm just gonna, you know, plow it in and do what I did with this other person who seemed vaguely affected the way that this other person I know, is.

Cathy Ryan: 13:59

You and I think, you know, for me, I the communication is so important in life, and certainly in my professional capacity as well. And and I'm not afraid to ask questions, you know, and even if I'm in the leadership role, you know, for example, if I'm teaching leading a workshop, I'll let people know, hey, I don't know everything. Like if you've seen something different here. Can I ask you questions about that? So I'm not afraid to ask questions. And I think that's a really important thing for all of us, as a healthcare provider, to not be afraid to ask questions, you know, and just simply ask someone, what do you need me to do? So that this is the best possible experience for you? Yeah, do you need my assistance or not? You want me just stay out of your way? You know, what is the best thing that I can do? Yeah, yeah.

Cal Cates: 14:52

Well, and I wonder, Kelly, if you can speak also to and I want to really acknowledge we had a gentleman on who was talking with us a couple of months ago now about how to be more sensitive to the needs of First Nations people. And he said that, you know, in his advocacy work, it's kind of exhausting, because part of how you teach people is to talk about your own really personal, hurtful experiences and to say, like, you can, you can not do this to someone. And the way I'm going to teach you is to tell you what's happened. But I'm curious if, like one of the one of the recommendations is that or one of the habitual things that people do is they say, What happened to you? Or what do you have are like, sort of these rude and tactless ways of of getting at what's useful as a provider? And I think I mean, Kathy kind of pointed at it. It doesn't actually I don't need to know the diagnosis or, you know, what I need to know is what's it like to be in your body? Yeah. And sort of, how are you willing to share? Do you have stories of people who have just really botched that question and kind of what we can do to be better about gathering the information we need to just be useful to you and your body? Yeah,

Kelly Mack: 16:07

yeah, no, that's a really good point. And it can be really hard for people with any sort of condition to talk about these kinds of things. And I, you know, I've had a lot of not so great encounters, you know, like, the question like, what's wrong with you or something, you know, something like that. And, you know, I prefer to not think it's really wrong. It's just how I am. And some days, I wish it were easier. But um, you know, this just the situation, I guess you could say, and I think what you were saying about framing it, as, you know, what are you experiencing today? Or what is, you know, how are you feeling even? Why are you here for treatment? You know, what are you hoping to get out of this? What challenges are you facing right now, I personally don't mind telling people my condition, because I think it does help some people who are familiar with rheumatoid arthritis to say, okay, so she's dealing with this maybe cluster of things, and I can ask her about that. I don't mind sharing that. But it does depend on the person. I know that I have a severe case of rheumatoid arthritis. So I will say that outright. And I will say, Look, I'm dealing with pain here, or stiffness here. And I really want people to be informed when I'm getting treatment about what's going on. I will also say, I don't always know. So you may touch me, and I will be surprised that it hurts. And I just want you to know, that might happen. You know, I, I think you know, I'm trying to educate but also say I don't always know myself, like, one day, you know, I will be okay. And another day someone touches me and I'll be like, yowzer, you know?

Cal Cates: 18:11

Yeah, yeah.

Cathy Ryan: 18:13

Well, and you know, as a massage therapist, that is classic, you know, with with any person that might come into my practice, you know, that we stay say, Okay, well, this has been sure. And, you know, can you help me with that? Sure. No problem. And, and then perhaps I'll shift to another area, because there might be, you know, some kind of connecting piece there. And they're like, Whoa, I didn't even know if that was sore. So I mean, that's just such a common thing for massage therapists and, and Kelly, one of the one of the things that you talked about, and some of the information that you graciously provided us ahead of time for this talk. was, No, I just lost my train of thought maybe, maybe it'll come back to me. But there was one thing that I wanted to touch on, that I thought was really important. But yeah, come back to me, I'll think about that. And I have to remember, I lost it.

Cal Cates: 19:07

I'm interested also, since we love to talk about the uncomfortable sticky things. It's interesting, I spent this morning actually reading a variety of articles that sort of relate to systemic marginalization, I guess I would say in a variety of populations. And I, I was thinking about how, you know what, what we call the ablest narrative is really kind of like the, the able bodied person's version of white supremacy. That, you know, it's the basic idea is that if I don't need a wheelchair, I'm better than you. Yeah, yeah. You're sort of nodding. So. So I mean, you know, one of the papers I was reading talked about the weathering hypothesis, and sort of actually the relationship of systemic racism to birth, mortality and infant mortality, and in African American women in the US, and, you know, I think about, I think about people with disabilities and it, there must be a very similar experience that, like, when you wake up in the morning, and you go, it's gonna be hard to insert thing, right? And then you go out in the world, and I mean, you're in a motorized wheelchair and you get the look and you get the like, can you talk a little bit about like, how exhausting it is to make everybody else feel okay, about you having a motorized wheelchair?

Kelly Mack: 20:33

Well, that's a really good question. I mean, it is an everyday thing, right. And I actually have a little bit of a pandemic story about that. So I started teleworking early March. So I've been working from home continuing to be able to work thankfully yet. And so I hadn't been out for at least a month. Um, Um, for a, you know, in April, and then you know, really kind of I would go out a little bit, but not much since then like to doctor's appointments and essential things. And my spouse was doing the central shopping and we are ordering in. And I was really excited in July because our community has a pool. And I find aquatic therapy extremely beneficial. And I hadn't been able to do it because my indoor pool had closed for the pandemic. So I was very excited that they were able to do that in July. I think it was mid July. And so, you know, we, we had to book a time, all this stuff. So we go out there, and I do my therapy. And it's hard because it's been a while. And I'm really tired. And there's something in the back of my mind when I get back inside. And I'm like something else is going on that is making me so tired. And I realized it was the people looking at me watching me staring. And it wasn't unkind it was probably curiosity was like, Oh, we haven't seen this person, she has a wheelchair, you know, my husband had to lift me into the pool. You know, I needed help. And all these things I'm I you know, I'm not someone that doesn't go unnoticed. So I realized I was after months, you know, kind of being in my own little world at home, with my husband, sometimes going to the doctor's, I was no longer used to kind of the constant attention that I get on the metro and the bus and commuting and going to the pharmacy and all I was just it was like the armor had fallen off. And I had to just get used to it again. And, you know, people I you know, we were, we've been going now in the pool's about to close, and people have gotten used to me. And it's not I no longer feel it so much. But it was so shocking to me. And it took me time to realize that was what was happening. And it was okay. It was definitely a drain on my energy. But, you know, I was showing people I'm okay, we're okay, I'm different. It's okay.

Cal Cates: 23:40

Yeah.

Cathy Ryan: 23:41

Well, just the fact that you have to do that, right. I mean, that just in and of itself is anyway, my brain, came back around, and I found I found what I had lost. And it was you talking about how knowledgeable you are about your own body. And for health care providers. I mean, as a as a practicing professional, I have a body of knowledge and skills that hopefully I can provide something of value to the people come to see me. But one of the things I always have a conversation with my patients about is like you live in your body every day. Truly, You are the authority, you have information internally, and and as well, medically, that is probably far beyond my capacity. So please share that with me. And I know that's one of the things that you talked about is don't assume that people are not informed. You are the most informed.

Kelly Mack: 24:37

And I appreciate you you having that approach. I mean, I gotta be honest, not a lot of people I've encountered really think like that. And and, you know, I had, I had an experience recently where I was having a recurring ear infection. And my rheumatoid arthritis really just complicates my immune system. And the medication I take suppresses my immune system. So infection is really a big concern, and I was having such a hard time getting treated. And I kept saying, I know it's not right. I know it's coming back. I need a longer treatment than most people do. You know, they were giving me the standard five day and I was like, this is just not working for my situation, my body. And it, you know, I I felt very frustrated that I felt people weren't listening. And, you know, I did eventually get where I needed. But, you know, I think it can be really hard to persuade folks that I know what I'm talking about when like you said I Have the body I have the story. You know, I've had other infections I've had already since I was two. I have a few clues. I'm not always right. And I have a few clues that I know.

Cal Cates: 26:17

Yeah. Well, and I feel like I mean, this is such a, unless you're an able bodied white dude. You know, healthcare providers think they know more than you a lot of times. And yeah, I mean, it's just another place where you just become exhausted saying no, for real. For real. I'm in here. This is like, Yeah, wow.

Kelly Mack: 26:40

Yeah, this is what's happening. You know, I mean, I'm not making it up. But I don't really want to be on antibiotics longer than I need, you know, like, yeah.

Cathy Ryan: 26:51

I love those come on.

Kelly Mack: 26:56

Yeah, yeah. So it's kind of, you know, I'm, I'm fortunate that most of my doctors are really great. And listen to me, and I think a lot of it is, and like my rheumatologist, they're just so few people like me, or similar case, you know, there just aren't a lot of folks with very severe rheumatoid arthritis for 40 plus years. Like, that's just not a big thing. So in a lot of ways, at least, he feels like he's got to learn from me. And so that's a really great relationship to be having with a medical practitioner, you know? Yeah.

Cal Cates: 27:43

So one of the things that we, I'm really interested in all of these places where we're trying to improve equity, and just notice how we contribute to inequity. And one of the things I was thinking about is how, how, first of all, you know, we're all in this place of fatigue, that we're just so tired of having to, you know, welcome all humans, and make the world a place that's welcoming to all humans. And that one of the ways that we don't, we don't know we're doing this, but like, we organize a meeting, for instance, in the old days, where we used to physically get together, and you don't care about you just if you don't need a wheelchair yourself, you don't think about accessibility. And that there are other places where we I was reading this one article where this woman said, you know, one of the things that, that people do, who don't need assistive devices is like you're you're at a conference with someone who does, and you like, rest your legs, or your arms on their right. I know, that's the face I made. I was like, Are you kidding me? I would never, but people do that. And that's one of the tiny, one of those tiny cuts, right? Where you say, like, Oh, this is just my, my arm rest, or whatever. And I'm

Cathy Ryan: 28:52

glad I'm not the only one that had that reaction when I read

Cal Cates: 28:56

all of our listeners of like real back in horror, but I think like you said early in the episode, Kelly, so much of the harm we do is unintentional. And I think that's really where we can make so much progress is just being more thoughtful about that kind of stuff. And just noticing the dumb things that come out of our mouths. And it doesn't make you a bad person. It just means you need a little space between your thinking and your expressing. All right.

Kelly Mack: 29:27

Little learning. We're all learning, you know, like, one of my one of my phone system

Cathy Ryan: 29:34

recognition. An ounce of consideration, right?

Kelly Mack: 29:40

I have a lot of times where people grab my wheelchair on public transit, or lean on me. Yes, and I think to me, it's outrageously shocking. And I am not always reacting the best. How dare you towards the lady who grabbed my chair? And I, I did like one of those dog training maneuvers. I said No! You know, so, I, you know, I admit that people need to learn, but I know I can get impatient. And, you know, I think there's a little bit uh, you know, we need to give each other space for both of those things.

Cal Cates: 30:30

Oh, well, we had we had Dr. Jpop came and talked with us about performative ally ship and, and the various ways that we, you know, where and how to learn the things we need to learn. And she said, you know, you've really got to make room for people like in this case, she was talking about people in the BIPOC community and she said, You know what, lots of us have been dealing with this for a long time. And you just might hit us on the wrong day where we don't have time for your uneducated crap. You know, yeah, you you as the person who is not in the in the marginalized dehumanized group, could you get over yourself and be like, oh, that didn't go well, moving on.

Kelly Mack: 31:11

I will learn from that. Yeah,

Cal Cates: 31:14

right. Exactly. And we'll learn that we made the mistake. Not that people in wheelchairs are cranky. Right. Yeah.

Kelly Mack: 31:21

Right. Although sometimes I am. Yeah, well,

Cal Cates: 31:25

aren't we all? Yeah,

Kelly Mack: 31:28

I think I think you're right. I mean, we need to think about I think a lot of people don't understand my wheelchair to me is my body. It's not furniture. It's how I get around. It's not it's not a car. But it's very personal and intimate to me. So if you are touching it, I trust you and know you.

Cal Cates: 31:53

Yeah. Oh, that's such a good point.

Cathy Ryan: 31:56

And simply, it's yours.

Cal Cates: 32:00

Right. You wouldn't touch my backpack you wouldn't touch you wouldn't touch me.

Cathy Ryan: 32:05

Right? Is it? Like, you know, I don't know if this is massage therapists conditioning, but you just don't touch anyone's anything uninvited? Just don't?

Kelly Mack: 32:15

Yes. I've often wondered about that. Like, I I think I wouldn't go up and grab a random lady. Like, on the bus like I would? Yeah. I wouldn't do that. So treat me the same way. You know? Definitely.

Cathy Ryan: 32:33

It'd be like pulling someone's hat off their head. Oh, yeah. Can I just like use this on the armrests couldn't love it. So? Yeah. Wow. If I if I look shocked, I am Kelly. I am shocked. Talking

Cal Cates: 32:48

I imagine using a person's wheelchair or the person in the wheelchair to like, period. Let's just put a period right there. Yeah.

Cathy Ryan: 32:58

And there is a person, there's a person in that equation.

Kelly Mack: 33:01

I think one time I did say don't do that I'm a person. And, you know, I was pretty upset. But I was trying to be instructive.

Cal Cates: 33:12

Yeah. Well, and I want to get back to this, this thing you said that I think is really important about that for you. And I imagine this is not unique that your wheelchair feels like a part of you. And I think that in our in our haste and initial discomfort, maybe in working with someone who uses a wheelchair, we can't when the person comes out of the wheelchair, I think sometimes you can you can find yourself treating the wheelchair like furniture, right? That, you know, when when a person transfers onto the massage table to be really mindful about if you need to move the wheelchair to be able to do what you're doing to sort of say, do you mind if I move your wheelchair over here? Or like, you know, what's the where's the best place to put this or, you know, to really treat it like an extension of that person.

Kelly Mack: 34:00

That's very important. And I often will ask if if I'm transferring, you know, to a table or exam table? Where do you want me to put my wheelchair, and some of it is a negotiation, I need to be close enough to the table to transfer. But I want it to be out of the way. And the reason why I ask is because my motorized wheelchairs really heavy, you can't just push it. You know someone in a manual wheelchair, you could do that if you ask them. But, um, so you know, someone who doesn't know me isn't going to feel comfortable moving the chair. Yeah, so I want to get it right. Before that situation occurs. But, um, so I think, you know, if you're working with someone, you can say, Where's the best place to you know, have your chair for your needs? And, you know, the professionals needs and kind of negotiate the best outcome. Yeah.

Cathy Ryan: 35:07

Wow. Clear, clear communication. Wow.

Cal Cates: 35:11

Yeah, there we are, again, there we are, again, back to that bedrock. I feel like this is a place to where we we trip over ourselves because as the person who is not in the wheelchair, I think there's a sometimes there's a sense of wanting to not mention it. Right. You know, when it becomes this elephant in the room that is only an elephant for you. Like, you know, the person who came in in the wheelchair is cool with that. And so pretending we're trying to talk around it isn't necessary. Being frank and direct is actually a great way to create safety and build relationship and the things that we want to do.

Kelly Mack: 35:50

Yes, and I can tell you, I am very comfortable talking about my wheelchair. I could talk about it for hours. I love it. It get's me around. It makes me speedy, I can do really quick turns. It's fabulous. You know, people who use assistive devices love them. I mean, you know, I think if, if you're new to it, there's an adjustment. But once you, you know, adjusted, they are indispensable. They are beloved. You know?

Cal Cates: 36:24

Yeah, yeah. So I want to talk a little bit about the sort of, I don't know if you call them the legal implications or whatever. But I know when when I've worked in a hospital setting in an ambulatory hospital setting where like, my massage office was on a hospital campus, but people would come to the office, there was a lot of hand wringing, about transferring. And, you know, I know in your case, you're able to kind of get yourself up and pivot and pretty much transfer without a whole lot of help. But I know that there are some people who really need to basically be lifted onto the table. And as a massage therapist, certainly in private practice, I would, I would want that person's spouse or caregiver or someone to assist with that, because I'm not really covered to be able to do that. And I guess I just want to put in a plug for making sure that all the bases are covered for your safety as the client and for the safety of the practitioner in those situations.

Kelly Mack: 37:23

Definitely, and I think talking about that in advance is perfectly appropriate, if you know, when the person's making an appointment says I need this kind of help. And, you know, I want to bring this person or you can ask, can you bring someone to assist? I mean, I think having that conversation ahead of time is great. Ideally, even. And I think, I think it's a little tricky, because everyone needs to be safe. But I know that they're also, you know, I've encountered it at, you know, hospital type places that there's a lot of concerns about liability that sometimes I think, get a little bit over over much. Yeah, I, you know, I had a hospitalization last year. And I brought my motorized wheelchair. And I needed to be able to get in and out of bed into the chair so that I could use the restroom. And when I unknowingly they had put an alarm on my bed, that I couldn't get up. And they had decided without talking to me that I was a fall risk, which is probably really true. But I know what I'm doing. I can fall Yeah. But I do know what I'm doing. And I can transfer myself and again, it would have been, you know, I had to argue take this off. I'm going to be getting up and you don't want this going off. Yeah, I think it would have been better had they had that conversation with me. Yeah. And they would have been more comfortable. And I wouldn't have gotten so irritated. Yeah, absolutely.

Cathy Ryan: 39:13

And that is such an important point, Kelly, and I think in healthcare, there needs to be dialogue that involves the individual, the patient. So when those kinds of decisions are being made, you know, the healthcare professional can say, you know, this is what we're thinking of doing. And this is why we're thinking of doing it. What are your thoughts on that? Or how do you feel about that? Or, you know, do you feel that it's necessary? And if not, explain to us why you feel that's not necessary so that we can figure this out here together. Yeah,

Kelly Mack: 39:48

yeah, I think that's really right on and, you know, I think it goes to one of my kind of pet peeves and that, you know, I need to maintain my autonomy and make decisions. And I respect that there are other concerns. Let's talk it through. Right? Like, you know, I, I'm gonna go to the restroom, you don't want an alarm going off, let's figure it out. And realize that I am an autonomous person, I'm going to make decisions. And you may not always like them. Right? That's, that's just gonna happen. Yeah,

Cal Cates: 40:32

right. Well, and I think that I mean, it's different but shades of similarity as I as I think about the history of restraint and overmedication and the ways in which people with disabilities have been sort of limited in their autonomy for the convenience of health care providers, that there the long legacy of that and for us, as present day health care providers to just be aware that even though maybe the person in front of you hasn't directly experienced that, that sort of fear and concern is not unfounded. And how can we be sensitive to that in a way that really makes it clear that my goal here is for us to have an effective safe session? That you're kind of the boss of as much as possible? Yeah. And yeah, I think we and this comes back again, to like Kathy said, I mean, I think the most, we do the most damage as practitioners with our mouths. And, and this is another place where unwittingly, we we make mistakes, either by not using our mouths or by using incorrectly. Yeah,

Kelly Mack: 41:39

yeah. And there's, you know, two big fears that a lot of people with disabilities have, and I've experienced this one being controlled all the time, you know, either accidentally or purposefully, through, you know, medical treatment, and two not getting the treatment that I actually need. Yeah. And, you know, it's two polar opposites. But I've experienced both.

Cal Cates: 42:12

Yeah.

Cathy Ryan: 42:14

Oh, um, you know, I think something that is rather unique about you, Kelly, I'm sure there are many things that are rather unique about you. But no, one of the things that I observed is your capacity to advocate for yourself. You know, that that is something you know, certainly I've seen it generational, you know, my parents generation, for example, you just did not question anything, any medical professional said, You just did what they said, I'm, I'm not of that ilk. I think you are respectful of the professionals that you're engaging with, because you're going to them for their perspective on something. But I, you know, so many people don't know that they can actually advocate for themselves. So there, there are many folks that, you know, their autonomy is completely obliterated for a variety of reasons. And folks, because they're not advocating for themselves,

Kelly Mack: 43:05

yeah. Or they fear retribution, right. I speak up, is this doctor or whomever going to refuse treatment? I mean, that's a real, that's a real fear. Yeah. And

Cal Cates: 43:20

it happens. Absolutely. Yeah. will refuse treatment or just not give you the optimal treatment?

Kelly Mack: 43:25

Right? Yeah. Well,

Cal Cates: 43:27

I think that when you when you said that about, you know, your two biggest fears, and thank you for sharing those because they're really clear and things that we can, you know, operationalize in our awareness. But the second piece, I think, as massage therapists, I would be surprised if a lot of our listeners didn't say, oh, yeah, doctors. And, you know, I think about massage therapists and how often we talk in oncology massage about under treatment is just as bad as sort of wrong treatment. And so I think when we see a person who is in wheelchair uses assistive devices, or maybe lives with a chronic disease, we think, Well, I'm just going to work lightly. Right. And that might not be the right treatment. You know, you have to learn about this person and how whatever it is they're living with affects their body and what type of treatment is effective for them. And that may not happen on the first session, but it only happens through communication and curiosity, and, and a willingness to not be an expert. And to just say, like, yeah, so let's get as close as we can to what's the most useful for you? And caught on? Yeah. Yeah, and this human gig is complicated. So as we as we close out our, our discussion today, Kelly, are there. I mean, there been so many words of wisdom already. Are there things that like you don't want our listeners to go to bed without knowing?

Kelly Mack: 44:58

I think kind of reiterating offering choice as much as possible. Recognizing each person has their individual differences, quirks, things like that. And realizing every situation just needs that great communication.

Cathy Ryan: 45:26

Excellent.

Cal Cates: 45:28

I swear Cathy and I did not pay Kelly to say that. It's I'm sure our listeners think that every one of our guests is kill. But this is this is it if there can be one important skill in caring for humans, it's communication,

Cathy Ryan: 45:43

communication and informed consent. Yes.

Cal Cates: 45:49

Well, thank you for being with us today. Kelly. It's been an absolute treat, and I hope our listeners have learned some things.

Kelly Mack: 45:57

It's a pleasure. Thank you.

Rebecca Sturgeon: 45:58

We hope you enjoyed this conversation with Kelly Mack from September of 2020 Interdisciplinary we'll be back next week with a brand new episode. And we hope you enjoy it. Please give us a like write us a review the reviews and words definitely help us out a lot. Check out our Patreon at patreon.com/interdisciplinary and we hope to see you around. Interdisciplinary is produced by Healwell. Our theme music is by Harry Pickens. new episodes are available weekly through your favorite podcast outlets. And you can send us an email at podcast@healwell.org podcast at Healwell dot org. Thanks for listening