Dawn Taylor| 08/11/2023

Transcript

Dawn Taylor

Good morning. It is me, Dawn Taylor, your host. And today, we get to talk to one of my favorite humans. Her name is Bean Gill. If you do not know Bean, you need to. She's a movie star. No, I'm just kidding. But she does have a TV show. Bean is an Indo Canadian woman who has lived through more adversities than most after being paralyzed by a virus in 2012. Yes, paralyzed by a virus while she was on holidays. We will get into that a little bit. She decided not to just lay down and die. She came back fighting and she decided that it was time to, well, not even time. I'm sure she was doing this before, but she stepped up in a major way and she co-founded the ReYu Paralysis Recovery Center here in Edmonton, helping hundreds of Canadians reconnect their brain to their body, retrain their nervous system, but also to figure out what is actually possible for somebody with disabilities. She's won so many awards, spoken on crazy stages. She has a CBC docu-series called Push that you can watch on CBC Gem. I highly recommend you do. And she is here today. So we're going to have a super fun conversation on this. But we're here to break some ideas on a few things around disability. So what are we talking about today, Bean?

Bean Gill

I'm muted. Thanks for having me.

Dawn Taylor

No problem.

Bean Gill

Conversation. Um. Yeah. What are we going to talk about today? We're going to talk about all the things most people don't want to talk about. We're going to destigmatize sex, incontinence, bodily functions, having a disability, the attitudinal barriers that people have, the stigmas and biases and stereotypes that people have and hopefully break a lot of those down.

Dawn Taylor

100%. So let's start at the beginning, even just with your story. So, you and I met a couple of years ago. Someone had connected us with a zoom call, hit it off, and then we're kind of, how have we described ourselves? We're both like really motivated, driven business women. And so when I came back to Edmonton, you were very high on my list of no, I actually want to, lik,e meet you in person and hang out. And we had a blast at lunch. It's so much good food and I had such a good time. But we've also had some really interesting conversations around like where this all started, what all happened. And I think if you're open, let's even start there of, let's start with Vegas.

Bean Gill

Sure. Yeah. So 2012 is where the bulk of my story begins. I guess, um, you know, 2012 was. And hope remains the worst year of my life. That year in April, I left my ex-husband after he beat me up for the first and last time. You know, and then a couple of months later, my dad left our family, and that was decades in the making, but still really hard to go through on that day. And then two weeks later, I was in Vegas on vacation. Woke up on Friday the 13th and we were supposed to go to the pool that day. I, you know, went over to the window, open the curtain, saw that it was raining. I walked back to the bed and those four steps that I took would be the last four steps that I would take on my own. As I got into the bed, I experienced the most excruciating pain I've ever felt in my low back. Um, the pain was like a 20 out of ten. Very, very bad. And then I couldn't move my right leg. So as I lay there trying to move both my legs, only my left leg was moving. And then a couple of minutes later, it went prickly from my hip to my toes and like a kind of motion. And I was left paralyzed from the waist down. Within ten minutes. 

Dawn Taylor

Okay. For you. For anyone listening. Hear that for a second? Like, trauma, like crazy. Probably finally on this trip, wanting to, like, rejuvenate, have some fun, find some laughter. And you literally go from standing and find to go to the pool to paralyzed in ten minutes. So, what happened? I mean, the medical reason for what happened. 

Bean Gill

I mean, my story is super long and complex. And so if you want to hear the full thing, you can go to rambling with ReYu. That's our podcast, episode one. Um, but I left with a misdiagnosis of conversion disorder because they couldn't find anything diagnostically or physically wrong with me while I was in Vegas. And so, that condition basically means that you're so stressed out that your brain tells your body to shut down. Now, given my year and also the 30 prior to it, it made sense. Back then, I couldn't talk to you like this. I wasn't able to communicate my feelings. I could not speak my truth. I buried everything inside plastic, a smile on my face and said, ”I'm fine. Everything's fine.” And it clearly was not. Um, but one of the blessings of this misdiagnosis is that it forced me to see a psychologist and still see her to this day. Just saw her last week. And it's been one of, like I said, one of the biggest blessings because she taught me how to communicate. She taught me how to love myself. She taught me how to work through all of the trauma I've gone through and am going through and will go through because that's what life is. 

Dawn Taylor

Yeah. Oh. Preaching to the choir. Why you reckon we bonded in that, in a weird way of like, yeah, life's been hard, but we both have fought really hard to be where we are. 

Bean Gill

Yes, we have. And then I didn't get my official diagnosis until three months after I was paralyzed. And my official diagnosis is transverse myelitis at t10 T11, which basically means inflammation of the spinal cord. And it can happen anywhere along your spinal cord. Mine happened at t10 T11, which is at my waist level, so my upper body is unaffected, thankfully. 

Dawn Taylor

So, it was a virus that just hit your spinal cord and caused this? 

Bean Gill

Yes. 

Dawn Taylor

So I know people from the outside listening might think, “Okay, well, it's a virus. Can't you just take pills for that or antibiotics and you're fine again?”

Bean Gill

No, no. It's not that simple. The fact of the matter is, like our bodies are super complex, super, super complex. And the virus that paralyzed me, I believe it was the Epstein-Barr virus. EBV is super common. If you've ever had mono, you have it, right. Millions of billions of people have it. And there's many different strains of it too. Just most of the time it lays dormant in your organs and it feeds off of excess heavy metals and excess hormones. Um, those lucky ones like me, when we'll get to stage four. So stage four is when this virus senses a spike in your cortisol level, which is your stress hormone. And when it senses that spike, that's when it says to itself, “Now's my chance to go attack the central nervous system.” and it will attack either your brain or your spinal cord. And for me, I'm just like, “Man, like you couldn't attack something less vital, like my fat cells or something?” 

Dawn Taylor

Can we manipulate this? Like we signed off on the design of this body, right? 

Bean GIll

I have beef to pick with this engineer who signed off on this.

Dawn Taylor

Oh, that's so funny.

Dawn Taylor

You walk in. Can I ask, how old were you when this happened?

Bean Gill

I was 30.

Dawn Taylor

So 30 years old and all of a sudden, I mean, no different than someone getting in a car accident and all of a sudden being paralyzed. What were the biggest other than the obvious? I mean, like, I have to learn how to work a wheelchair and I have to figure that out. What were, like, the big stigmas and the hidden parts of it that nobody ever talked to you about or explained to you that would come with this diagnosis and new health issue?

Bean Gill

Oh man, how much time do we have?

Dawn Taylor

Much as you have. 

Bean Gill

First and foremost would be like the attitudes, the attitudinal barriers that people with disabilities face. Of course, the physical barriers, right. Stairs, snow, whatever. But the attitudinal barriers is what really kind of took me by surprise. The judgment, the pity, the inspiration. You know?

Dawn Taylor

Can you explain that? Because you and I've talked about inspiration porn. It makes both of us very angry. 

Bean Gill

It is. It's basically, you know, people coming up to you in the grocery store and saying, “Oh, my gosh, it's so good to see you out and about. It's great to see you out here.” And it's just like, so, you know, in the beginning, those kind of comments would destroy me. I would leave. I would want to go home. I would cry. I would feel less than. Now, I flip it back on them and, oh, my God, they let you out. They let you out. Did somebody congratulate you and give you an award for brushing your teeth this morning? Let me do that person today.

Dawn Taylor

That's awesome. And it's like, how do you feel? Does that make you feel good? 

Bean Gill

No, no, it doesn't. But people say these things not to intentionally hurt somebody else, but to make themselves feel better because a lot of people don't know how to interact with people with disabilities. They don't know how to talk to them. They don't know what to do. And so they say what they are programmed to say, which comes from media and the media uses the medical model of disability, which is, “Oh, these poor people, they're invalids and they can't do anything. Let's call them vegetables. Right? Like, I just can't. It drives me absolutely bonkers. Um, like, do we need help? Sure. Sometimes. And do some people need help all the time? Yeah, they do. But that doesn't make them any less worthy of dignity and respect. So that's the biggest thing. And then add on being Indian, right? Layer of cultural stigmas and discrimination in my culture is If you have a disability, you are thought to bring shame upon your family. And, like my culture is one of the most toxic cultures because it's like everybody has to make sure our family looks perfect. If our family doesn't look perfect and the eyes of the community, we have failed. And so I'm here to point out all the imperfections in everybody's family. 

Dawn Taylor

I have a lot of people in my world, from clients to friends that are in your culture, and it is 100% that. 

Bean Gill

Yeah. And it's just like nobody's perfect. So where are these expectations coming from? Yeah, Colonialism from the British. That's where they come from. But I digress. 

Dawn Taylor

It's okay. So for someone who is sitting back and going like, “Oh, I think this is me, I've been the one who's treated someone this way.” Let's dive into misconceptions. So if you have, if you looked at the title of this episode, you realize we're diving in, we're getting right to the root of this. Let's talk misconceptions. 

Bean Gill

The biggest one for both males and females with spinal cord injuries is can you have sex? And if you're on a dating app or you're single and you're trying to meet somebody, that's one of the first questions you get. And it's just like, I get it. People want to know. People are curious, right? So that's why I'm open about these things because I want to dispel a lot of this stuff. Um, but yeah, most people can and you know, there's different ways of doing things. If you don't have any sensation, there's different parts of your body that do become erogenous. And that's different for each person because our bodies are so complex and actually very, very smart, right? Um, but yeah, that's one of the biggest questions that most people have, and we addressed that in season one of Push. My friend Brittany, her and her husband, he's able bodied, she's not. They do a video of the sex positions that they use and they're fully clothed, but they talk about and they show how they have sex. And you know, a lot of people want to know. So I'm glad she did it. 

Dawn Taylor

That's awesome.

Bean Gill

Yeah. But there's just like there, that's one of the biggest things. And then there's also a lot of taboo around that, too. Right? And you know, I have had that conversation before as well of, we need to erase the taboo ness around pleasure and intimacy because we all want it. We deserve it. We need to have it. And it's more than just sex. You can find pleasure and intimacy in the foods you eat and the clothes you wear in the activities you do. So, just kind of breaking those down and giving people permission to explore these different things and different avenues and also breaking down their own. Like biases as to what sex is and what pleasure and intimacy means to them. 

Dawn Taylor

So, what are some other taboo topics around paralysis and being in a wheelchair that people aren't, that we need people to be aware of?

Bean Gill

Sure. I mean, bodily functions. Right? So, a lot of people think, “Oh, you have a spinal cord injury or you can't walk. Oh, that's too bad.” But it's so much more than that. Like, our spinal cord controls our whole body. And a big part of that is temperature regulation, also bowel and bladder function. And I lost bowel and bladder immediately after I was paralyzed. And, as most people do. Um, and then so, you know, you're now using a catheter to pee, right? And to go to the bathroom, like, to poop. It's called digital stimulation and that's basically sticking your finger up your butt and stimulating the rectum for the poop to come down and out. And, you know, we talk about it openly now because. we're just so sick and tired of being made to feel ashamed of how we have to deal with our bodily functions. Every single living being on this planet, even amoebas, shit. So, why are we made to feel shameful and dirty and insecure about how we do it? So, that's why we're here, to dispel all these myths and to talk about these things so that they become normal, right? Like incontinence, like, so I can feel when I have to pee and when I have to poop, but I can't hold it. My sphincters don't work. And so when I need to pee, like, I need to pee now and you know. In the very beginning, again, if I peed myself, that would ruin my day. I would go home. I would cry, I would be mad. I would feel sorry for myself. Now, I'm just prepared for it, right? Like I'll wear pull ups. I will have extra pants on me all the time, extra underwear, all the stuff simply because this is a part of my life. And, if I could do something to fix it, trust me, I would. 

Dawn Taylor

Isn't it interesting? It's being in a wheelchair. There's the obvious disability piece, right? That someone can look at you and go, “Oh, yeah, okay, that makes sense.” Listening, right? Like, even I didn't know a lot of this. And I'm like, Thank you, thank you for sharing because I'm a curious human. And also it's like, okay, that makes more sense to things, right? But I've often said, like, I was at a lunch meeting the other day and if I get a tickle on my throat, my sphincter on the other end doesn't work. So I don't have my upper sphincter on my, over my stomach, right? So if I get a tickle on my throat because of being on life support, because of the brain aneurysm, I can't just clear my throat or cough or drink and have the tickle go away. I projectile vomit like a party trick. It's the dumbest thing ever. And I've literally been walking through a grocery store with someone who just reached over calmly and grabbed like a box of crackers and just opened it and peeked into it and closed it and set it in my cart. Oh, like more times than you can imagine. I've had to do things like this or a bag of chips or a coffee cup or whatever. And I was at a lunch meeting and I just, like, I have to push on my throat. Like I have to literally, like, shove my fingers in between that little V piece and find where the tickle is and actually, like push my throat to scratch it. It's literally like, I have to scratch that, right? Yeah. And they're looking at me like, “What the hell are you doing?” And I'm like, My eyes are watering and I'm like, “I'm trying to not throw up on your face. Like, I just need you to know this.” Like, because, if this comes out, it's like a 1980s horror movie and it goes, Oh, my husband literally measured it like eight feet one time. Like, I like no, it's like projectile forceful vomiting. Oh, yeah. It's hilariously bad. But it was interesting because after I was done, he was like. “Just so you know, that didn't look super weird. Like if you've ever doubted yourself in public when you've had to do that,” he goes, “It just felt like you were checking your neck or your throat.” Like, it wasn't like this big obvious like, what the hell's going on situation. I just wanted you to know that. And I was like, “You know what? Thank you. Thank you for telling me that.” But is this weird? Yeah. Covid was fun, by the way, when every, like, cough meant you were going to murder someone. But it is a weird disability, and it's a complication that I now have had to deal with for the last 25 years that most people would never have to deal with and have no idea. And it's it always makes me cringe but laugh when a new client comes to see me and I'm like, “Just a heads up, this happens and I might have to get up and go puke and come back.” I'm okay. And I'm like, Oh my word. “Like, it's such a pain in the ass.” But it's just part of my reality. And I wish I don't know if I've ever really talked about that as being like one of my biggest frustrations because it happens everyday. Right. It's just this weird thing that I have to deal with, right? Yeah, It's these, like, hidden little complications that and that so many of us have that nobody talks about. 

Bean Gill

And it's because of that. Like, I need to appear perfect, right? Like, I used to be a perfectionist and a people pleaser. And so, like, I've really had to dismantle all of that in myself to be like, “No, I am who I am and my body is the way it is. And I will always strive to be as healthy as I can.” That will always be my goal and my trajectory in life. But what I'm dealing with is my reality. And it's, I'm not alone in that. And so by sharing it, like, first of all, we created a huge community, right? Because now people don't feel alone, nor do they feel shameful or embarrassed of these things that all of us deal with. Yeah, it's important to talk about it and to destigmatize these things. 

Dawn Taylor

It is so important. And that's why that's why I was like, “Hey, do you want to come on my podcast and talk about this?” 

Bean Gill

Yes, yes, I do want to talk about this. 

Dawn Taylor

So are there any other big, I don't know,. You know, those curiosity things that people like, the stigmas that people put on you? 

Bean Gill

Yes. Okay. So another one was specifically with spinal cord injury is, people are like, “Oh, you're paralyzed. Oh, okay. So you can't feel anything. You can't move anything. Right?” That's what most people assume. But actually, the majority of people can feel and they can move. There is definitely a percentage of the population that cannot and I will not distract from them. They definitely can't feel, can't move anything, but the majority of us can. And so we need to, like, dispel that to that. Like, “Oh, you're paralyzed, you can't do anything.” That's not, that's not true. And then also, within the spinal cord injury world, your diagnosis is either complete or incomplete and have such a big beef with these words because so many people put so much of their identity on words. And what it means is what it's supposed to mean is a complete injury. People think your spinal cord has been severed completely in complete meaning and completely. But what it actually is, is the doctor will stick their finger up your butt. If you clench, you're incomplete. If you don't clench, you're diagnosed complete. Basically your sphincter function. But like I said, they wrap their–

Dawn Taylor

Okay. Can we pause on that for a sec? 

Bean Gill

Yes. 

Dawn Taylor

They seriously determine your level of paralysis based on your asshole.

Bean Gill

Not the level. The level is determined basically, like where your injury is. Yes, complete versus incomplete is they stick their finger up your butt and you clench or you don't clench. It's archaic. 

Dawn Taylor

That is. Sorry. Like I'm blown away at that. 

Bean Gill

Yep.

Dawn Taylor

Is that like, on any level? How is that okay?

Bean Gill

Because it was okay 50 years ago. It was okay 80 years ago. And these are the things that don't change. In 1920, there were researchers who said the central nervous system can regenerate. Those researchers were laughed at by the general research community. They were right. They were right. And these other people are the reason that this whole stigma is here is because they were closed minded. They couldn't see what these other people were seeing and their ego stopped them from opening their minds to what is actually possible. Our brain is very plastic. If you can learn to brush with your left hand, guess what that is? Neuroplasticity, you're learning so you can reconnect your brain to your body. You can do all these things because our brain is incredibly complex and incredibly intelligent. 

Dawn Taylor

It is. So do you find and maybe this is super controversial and you can answer it or not, but I find and I had this conversation this morning with a client that, it's very hard to fight for yourself. It is very hard to step up and actually say, “No, I'm not okay, settling with where I am.” Do you find that in your community as well, that a lot of people will just curl up and die and be like, “Nope, this is my diagnosis and I'm done.”

Bean Gill

Yeah. Straight answer. Yes. And it's because. Okay, so people with disabilities are the biggest minority in the world. There's over a billion of us, right? And disabilities don't discriminate. You can be from any walk of life. You can be any size, any color, have as much money or have zero money, and you can end up with a disability. So there's such a vast array of people. And what I have seen through my last 11 years of living with a disability is that most people are sheep, right? Most people are followers, they are not leaders. And these followers will listen to these experts who are typically able bodied people about what they can or cannot do with their disabled bodies and the limiting beliefs from the healthcare system, from the media, from cultural stuff will get placed on these people and then they will start to believe it. They will start to live those limiting beliefs and they will stay within those confines of those limiting beliefs. I was there. I trusted my health care professionals. I actually lost all of my own knowledge being an x-ray tech working out since I was 12 years old. I forgot all of that and put all my trust in my health care professionals. Did they help me? Yeah. Did they help me? To the best of their ability? No. And it wasn't until I started taking true ownership of my recovery journey that I started that. That's when I started seeing actual growth and actual recovery. Because it is up to you. And now being in the role that I'm in now, like I get asked many times, “Do you think I'm going to walk again?” And my answer is always, “Do you think you'll walk again? Because if you think you will, you will. If you think you won't, you won't. It doesn't matter what I think.” But yes, I believe everybody can walk again because that's literally my business, right? You know? .

Dawn Taylor

No, and thank you for saying that, because it's, I talk all the time about one of my one of my biggest whys behind why I do what I do is trying to eradicate this bullshit belief that there's a socially acceptable level of broken. And that's just as good as we're going to get. Yeah, no. You're just always going to struggle with anxiety and you're always going to struggle with depression and you can't actually heal and you can't actually. And I'm like, “No. Fuck that.” Excuse my language, but fuck that. Like because so many people have bought into it and they've just settled in. 

Bean Gill

And to these people, I say disrupt the system, ask your doctors, question them, do not take what they say as to be the definitive answers because they don't know. And now, I mean, I've been told that I'm a difficult patient and said, “Yeah, I'm going to make you work for all that money you're making.”

Dawn Taylor

That's awesome. 

Bean Gill

I'm not going to believe everything you say. I'm going to ask to see the research papers. I'm going to ask to see all these things. And so now I had a terrible situation with a women's clinic here in Edmonton. And when I went there, the doctor, without even making eye contact with me, she has a clipboard and she comes into the room. She's like, “Hi.” She's like, “Okay, so you have transverse myelitis, okay? So you can't move and you can't feel, okay.” And then I was like. “Um, excuse me. Hi. I'm actually a human being sitting here.” and these are the things I actually said to her, and I said, “I can feel and I can move. I can't feel hot, cold or pain below my level of injury, but I can feel and I can move.” And then she goes on to say, “Okay, so go ahead and tell me all of the things you can't do.” And I said, “All right. But before I do that, I'm going to ask you.” And I opened up my phone and I open up my notes page and I said, “You tell me all the things that you can't do. Have you climbed Mount Everest? Are you an Olympic swimmer? Are you a marathon runner? Are you a mountain climber? Are you an archaeologist? So go ahead. Tell me all the things you can't.”. And she looked at me and I held eye contact with her for like a minute and said, “How does that make you feel? Do you feel good about yourself?” I'm like, imagine how that makes all of these other people with disabilities feel when you don't even make eye contact with them and you assume these things and then you ask them to talk about all of their limitations. And I will say that to every single doctor, you know, I will be joined by anybody. I'm not scared of anybody. Don't care how many letters you have behind your name. If you're a human being, you're on the same level as me, man. And you sit down when you talk to me. That's my attitude. Because like, you have to write like, what do these people know what you've read in textbooks, what the what big pharma has taught you? 

Dawn Taylor

Oh, right there. 

Bean Gill

I get very passionate about this because it's so frustrating. I've said to him, I've said to one of my doctors before, “Okay, remind me again how long you've had your spinal cord injury for.” Oh, you know I don't have one. I was like, “Oh, okay. And so tomorrow you have a spinal cord injury. Are you going to accept the advice that you're giving me today?” And then they usually break eye contact and said “Absolutely not. You're not going to. You're going to use all of your money. You're going to use all of your resources to find the best therapies around the world to help you. But why are you going to stop your patients from doing that to.” Go home and reflect on that. It's tiring having to be this person to question everything, to, you know, educate constantly. But if we don't do it, these stigmas continue, these stereotypes continue and we will not disrupt the system.

Dawn Taylor

Oh, and it's, you know, it's funny, as I was just sitting here, as you were talking and thinking like what stigmas and stereotypes did I think? 1.4s Growing up of someone in a wheelchair. From watching TV, from watching movies, from just life and people talking. I always for some reason, and I don't know why. Because like, I grew up with Terry Fox, right, Like, and those sorts of things. But it's like. I always had a stigma that in order to be in a wheelchair and have a physical disability, you also had to have a mental disability.

Bean Gill

That's a big one

Dawn Taylor

RIght? That those two were intertwined. And sometimes, sometimes they are.

Bean Gill

Sometimes they are.

Dawn Taylor

Right? But it's like, it's like when someone who doesn't speak English and someone talks to them and they just think if they talk louder, they'll understand them.

Bean Gill

Yeah.

Dawn Taylor

And I think that as society we need to human better, like so much better And we do. We need to step up and actually get curious and go, “Hey, you know what? I don't understand your culture. I don't understand what it's like to be in a wheelchair. I don't understand what it's like to fill in the blank. Let me learn.” Yeah, let me learn so that I can human better with you. 

Bean Gill

Yeah. It's creating those safe spaces for these conversations to be had. Right. And like, as people with disabilities, as annoying as it is, we are the ones that have to go out into the able bodied world and show people where normal people do. We're regular people. Whether we have an intellectual disability or not, we are still regular people who deserve respect and dignity. So disability etiquette is something that I talk about a lot, right? Because like, we need to perpetuate that and it's something just as simple as making eye contact with somebody. 

Dawn Taylor

Okay. So give us some disability etiquette, okay? Give us some like, because I know like even when we went out for lunch, right, it was like it's a different thought of like, “Oh, we need to pick a restaurant that's really easy, that doesn't have stairs, that has space between tables.” Right? All those things. But yeah. What are some like, top disability etiquette things that people can walk away with?

Bean Gill

Some easy, easy, easy ones. First and foremost, making eye contact, right? So if you see you're walking down a mall or the airport or you're in the movies or you're somewhere and you see somebody with a disability, most people's innate reaction is to look away. Most people. But then we as people with disabilities feel ignored. We feel like we're not here, we're transparent, like you cannot see me. Do I not take up space? And I'm not worthy of taking up this space. So make eye contact. Just look at them. Crack a smile, right? Even if you're wearing a mask, you can still tell when somebody's smiling at you. Oh, that's all it takes is eye contact and maybe a head nod or something. Right. Now, that person like, to you in your day, a blip in the radar. Not even a blip. Right to that person. They now feel seen. And the three most basic things that humans need are to feel seen, to be heard and to be loved. That's it. And so simple. Simple. Make eye contact. Okay. Second, talk to them. If you want to talk to them, talk to them. But there's certain ways to talk to people, right? So one, of course, do not ever, never ask anybody, “Hey, what's wrong with you?” Don't ask them that.

Dawn Taylor

What? That's not appropriate.

Bean Gill

But a lot of people will. Because they don't know the language to use. And this is also like a very gray area of whether you should ask somebody about their disability story. Because, a lot of people it is very traumatic and a lot of people don't want to talk about the most traumatic incident in their life over and over, over and over again to complete strangers. However, totally, a lot of us are okay with it, too, right? So many of us don't mind sharing our stories. We don't mind telling people what happened. We're at the point now where we can make fun of it. We can laugh it off, however, so just be aware that you might run into some people who are super grumpy and don't want to talk to you and respect that as well. 

Dawn Taylor

So what is the right language to use?

Bean Gill

Okay. So, generally you can say, you know, you see somebody using a mobility device, you could be like, “Hey, like, I see you using a mobility device. Would you mind telling me a little bit more about it?” Or if you see a parent with a child with a disability can be like, “Hey, like, I see your kid has a disability? I would love to learn more about my community and I love learning about people. Would you mind sharing your story with me?”

Dawn Taylor

What a beautiful way to word it. 

Bean Gill

Right? Like when you come from that place of genuine curiosity. Like I actually want to know more about you. People will tell you too much, right?

Dawn Taylor

I can see that.

Bean Gill

But I've been asked. Oh, like. “So what happened to you?” And, you know, like, that's gossip. You're asking me so you can gossip about me? And that's the Indian community. Majority of it. Right. “Can you tell what happened? See what happened to these people so I can go talk about it with my family and with this person and that person?” Yeah. And in those instances, I'll still say like, “Yeah, a virus attacked my spinal cord.” And then they're kind of, like, because most people don't expect me to say that, they're like, “Oh, car accident.” or whatever, right. 

Dawn Taylor

100%. Yeah,

Bean GIll

But yeah, it's honestly, it's your body language. It's your tone of voice. It's your Intention behind asking the question. It will come through when you ask it. So ask yourself, “What is my intention here? Is it pure? Is it to gossip? Why do I want to know?”

Dawn Taylor

Which is awesome. You know what? I. I don't know at all what it's like to live in your shoes or to live your life. But after the brain aneurysm, I was in a wheelchair for a few months. And had half a shaved head and had doubled my body size in a hospital on steroids and. Man. I remember at one point I went to the dollar store because it was so sick of people looking at my head. It was like, stop staring at the scar. Stop staring at the big shaved section, stop staring at it. And it was going into summer and I had my husband, who was my boyfriend at the time, go to the dollar store and buy the biggest, ugliest fake tattoos he could find. And I covered my legs in them because it was like then people are so busy looking at my legs, it won't they won't notice what's going on with my head. I was just like, got to love being 18. Dealing with trauma. Right?

Bean Gill

The technique.

Dawn Taylor

The technique I used. Right? Like, it actually makes me laugh. Even that I told you that I was like, I love that. That's what I thought was a good fix instead of, like, calling people on their shit, right?

Bean Gill

Yeah,

Dawn Taylor

There was such a stigma and there were so many looks. And like, I remember sitting in the vice principal's office crying one day because I was like, I don't even know how to get to my classroom. Because it's all stairs. Yeah. Like I literally cannot go up the stairs. And he's like, “Oh, yeah, okay. There is an elevator somewhere.” And I was like, “Seriously?” Like, This shouldn't be so hard.

Bean Gill

Agreed, it shouldn't be, but our society is still so ableist and mean. You know, people are talking about diversity, equity, inclusion all over the place since 2020. But. Talk is cheap.

Dawn Taylor

Oh, there's no action.

Bean Gill

It's cheap. There's zero action happening as to, like, people actually being inclusive I mean, there are some people that are taking action. I'm not going to just distract from them. They are doing the work. But there's a lot of people that aren't and big corporations are a big part of that, that they are not actually doing what they can to make things more accessible or inclusive. And it's just simple things that they need to do to make things inclusive to be, for example, I want a very prestigious award last year and they told me everybody else will be going up on stage to get their award and you're going to come in front of the stage and said, “No, I'm not. I'm going on the stage.” And they said, Oh, but like the ramp didn't work for this other lady, blah, blah, blah. And I was like, “Get a better ramp. Good for her. I'm going on stage, figure it out.” And I went on stage and like, you are not segregating me and keeping me lower and not even just like the metaphorical action of it, but like I'm physically lower. No, I will not take this. And for me, one of the hardest things to get over after being paralyzed and I'm still not over it, is having everybody look down at me and having me to have to look up at everybody when they talk to me. I can't stand it. Absolutely cannot stand it. I used to be the girl who would walk in with six inch heels, be one of the tallest people in the room, Command attention. And now people don't even see me. Yeah, it's really hard.

Dawn Taylor

So what is the safe, comfortable way for that? Right? Because it feels, I think, on my end, like it would feel condescending or minimizing. To, like, squat down in front of you. Yeah. And do that, right? Like, maybe it is. Maybe it isn't. It feels. like, childish. And you're not a child, right? I don't want to be like that. But if that is the right thing to do.

Bean Gill

Yeah. I think it's situational. Okay, so, like, what I usually say is like, okay, say we're having like, you're coming to ask me a question. It's 30 seconds.. It's fine. Just bend over and talk to me.. Or like, it's fine. I can look up and talk to you. Or if you are a very tall person, like if you are six feet and above and we're talking for more than a minute, like ask be like, “Hey, do you mind if we move over here so I can sit down to talk to you?” Like if there's no chairs around, right? Or I will see people are getting uncomfortable. “Like, do you want to go sit down?” I'll just ask them, like, “Do you want to sit down?” Because it does get awkward and people don't know what to do or people will. They'll take a knee or they'll kneel or they'll squat, but then they can't get back up, right. Then they’ve got their hands on my legs. They're using me. But it's happened a number of times. 

Dawn Taylor

Okay, that's really bad but hilarious. 

Bean GIll

And so we just kind of use your judgment, right? Like if you're having a longer conversation. Just go ask to sit down somewhere so that you can speak or like at networking events where it's loud and hard to hear. Like it's really hard for me to project my voice up to somebody who's six foot two. So it's really situational. And depending on, like, how long the conversation is, I've had people kneel down to talk to me too, and that's fine too. I mean, it's hard to offend me unless you say something racist. It's hard to offend me. So I will just kind of like, correct people and like, you know, most of my friends will do the same thing, too. Um, so, yeah, I don't know, like, it's kind of there's no right or wrong way to approach this and mean like, you're not super tall. So when we were standing and I was sitting, it wasn't that awkward of a conversation because you were like, right there. 

Dawn Taylor

No, I'm real short. Tall for a hobbit. Oh, is there? Is there anything like I know one of my one of my personal struggles is I would love to host you and cook for you and love on you in my home, but I don't know how to get you in my home.

Bean Gill

I mean, wherever there is a problem, there is a solution, right? So myself, I am now able to walk up a few stairs. So if you can carry my wheelchair up for me, I can walk up the stairs or I could scooch over onto my butt and like, bum up the stairs and somebody else take my chair up and then I can hop back into my chair. Or if we have strong people around, they can just lift me up in my chair up the stairs. Right?

Dawn Taylor

Then I'm inviting you over because I love to feed people and cook. 

Bean Gill

Yeah. Love to eat. So I'm down 

Dawn Taylor

And have a quite wheelchair friendly house. There's lots of open space!

Bean Gill

I'm lucky and privileged to use a manual wheelchair. My wheelchair weighs like 30 to 40. Right. But somebody in a power chair doesn't have those luxuries. A power chair weighs a minimum of, like, 200. Right. So lifting one of those bad boys?

Dawn Taylor

Not happening. 

Bean GIll

Not happening. Right? And so, you know, there's, like, different levels to this. Right? People have different levels of ability. Different levels of independence. Yeah. Um, if our city didn't love stairs so much, the authentic upstairs, we would be able to have more visible homes or have more zero entrance homes. Right. Um, and this is just a big problem that we have here and that we will continue to have until we have true inclusion with universal design. 

Dawn Taylor

And it's true. We were talking before we got before we started the podcast, we were talking about, you know, even like for you to go to hotels or for you to go out and want to like hang out at a cabin somewhere or do any of those things, It's so hard to find places that are, that are available for you. that actually work.

Bean GIll

Yes, it is really hard. I mean there are more and more now thankfully, right, but yeah, they get booked up really fast and mean even take hotels for example. Okay. Hotels have to have wheelchair accessible rooms. They must by law, but they do not have to reserve those rooms for people who need them. I have called many hotels and even going to Mexico where you pay six months in advance to book a room, they will tell you that when you get to the resort that we cannot make sure we cannot hold the accessible room for you. Somebody else might be in it. And I'm like, “What? I'm literally reserving this room six months in advance. I've given you my money telling you I'm coming here.” And they still say you can't. And I've had like, you know, I've gone to other hotels, local hotels and stuff too, and been like, Yeah, like and luckily, like, I don't need a wheelchair accessible room. I can make a regular room work for me.

Dawn Taylor

But not everyone can. And that's not the point. 

Bean GIll

No. And so, you know, I've had people, hotels say, “Oh yeah, we have two accessible rooms, but currently they're being used right now.” And I'll ask, are they being used by somebody who needs their wheelchair accessible room “Oh, no. Can you ask them to move to a different room?” “No, we're not allowed to disrupt.” Oh, you can disrupt my life. That's not a problem at all. But these are. This is covert ableism. 

Dawn Taylor

So what are some awarenesses on that? Because I'm even thinking about that in regards to like it drives me crazy when people park in the wheelchair accessible spots at a grocery store. 

Bean Gill

It's funny you say that because tomorrow morning we're hosting a protest. We're holding a peaceful protest against our accessible parking stalls being taken all the time because we are so sick of it. Every single day we find somebody parked in our stalls and the excuses we get are just ridiculous, right? Like, “Oh, I'm just doing in for a minute and just picking somebody up, dropping somebody off.” Uber Eats and DoorDash are the worst. They're the absolute worst. Um, and so, yeah, we're, we're going to, we're going to have a protest tomorrow morning and just kind of disrupt the system a little bit and say, “Well, we're going to take your spots. How do you feel about that?” Yeah. And so now what my friends and I have started doing is just like, “Okay, you're going to park here for just a minute. I'm going to park right behind you so you can't move. And guess who's going to get the ticket and the tow? Fine. It's not me. That's you.”

Dawn Taylor

That's awesome. 

Bean GIll

And so that's what we've started doing is “Okay. Go ahead. You're going to be here for a minute. I'm going inside for a few hours. See you later.” Right. But also, people are violent and people get very angry. And so you have to watch out for your safety. It's the entitlement that people have. It's the privilege that people take for granted and don't check in themselves. And that oh well, this is my spot. Like go somewhere else. And it's just it's so frustrating. The bathroom stalls is another one, right? So going back to disability etiquette, simple things I say is don't park in our parking stalls. Don't use our bathroom stalls. And I'll show you a quick story with you as to why not to use our bathroom stalls. Okay. Like I said before, my sphincters don't work. So if I got a pee, I got to pee. Now, one day we were driving my mom and I was like, “Oh, I really got to go to the bathroom.” We saw a Walmart. So we pulled off, went into the Walmart and, you know, my mom pushed me into the bathroom and I'm wheeling by 15 regular stalls to the one accessible stall. At the end. I gotta a pee so bad I'm just wheeling, wheeling, wheeling. I ram into the door because that's how open most doors, right? I just ram into them. It's locked. Fuck. I look through the crack in under the bottom and I see two able bodied feet sitting at the toilet like. God. And so I'm sitting there, I'm like like kind of calming my breathing, relaxing my body, trying not to think about it. And, you know, 20 seconds, 30 seconds,. I'm like, okay. Then I knock on the door. “Are you almost done in there?” “No, I'm not. You're gonna have to wait till I'm done.” “Okay. Well, this is the only stall I can fit in, so you're going to have to hurry up here.” And this lady didn't. So I peed my pants sitting right outside the accessible stall, unable to fit in any of the other stalls. She comes out and not even a sorry or anything. And I gave her a mouthful. And then she goes to the sinks where my mom is, and my mom gave her a mouthful and I had to go into the stall where she took a giant shit. I have to sit in her warm shit smell to clean myself off. Is this dignified?

Dawn Taylor

Not at all. 

Bean Gill

Accessible bathroom stalls are there for people who need them. Not for people because they want the extra space to take a shit. And the gray area is with kids. Right. That's a gray area because most, most accessible bathroom stalls, that's where the change table is to. Which is a big no no. If you look at the ADA and actual accessibility legislation, you cannot put that in there. But most people do because, hey, space, we only have big stuff. So why not just stick everything in there? Right? And like, I don't get mad at moms with kids because this is the gray area. Where else are you supposed to go? Right. But when I was just in Seattle's airport, it was magnificent. They had a giant accessible stall and then all of their other stalls were also accessible. They weren't all big. They were big enough. The doors were big enough for me to go in. They had grab bars in all of the stalls and they were big enough for a mom and two kids to fit in there as well. So that's a solution. Make everything accessible, stop retrofitting it for us to be like, “Oh, wait a minute, Let's, let's pop this in there, there, now it's accessible.” That's what our city of Edmonton is great at, is retrofitting retro fixing mistakes from 20 years ago. Oh, look, they have such a hard time thinking about the future. Like if we just thought about universal design right now, you won't have to go back and fix this in 20 years. It'll already be fixed. 

Dawn Taylor

So as a business owner, what is something right now that a business owner could do? If they have a storefront property, they have a business, What is something that they could do? 

Bean Gill

Um, first and foremost, talk to your landlord about the snow removal company that they have contracted. Make sure snow removal is done properly. Make sure that there is at least. Okay. So code says one accessible stall per six regular parking stalls. Anybody who does code, ook at like all these big Costco grocery stores. There's no code following there. Right. So making sure that there actually is a wheelchair accessible parking spot or two, is there a curb cut so you can get up onto the sidewalk to enter your building? Is that curb cut in the accessible parking stall? This is also a big no no. But a lot of people do it because to save space and to save time, a lot of snow removal companies will shovel all the snow off the sidewalk into the accessible stall via the curb cut and leave the curb cut filled with snow and ice. It's terrible. So people need to educate themselves as to what curb cuts are, why they're important, and then talk to their landlord. And the snow removal company about making sure that it's done properly. As far as accessibility goes, having an automatic door button for your exterior door of your building, it's a cost, that's for sure. It's about $3,000. But now you're opening up your business to so many people that wouldn't be able to access it. If there is a step to get into your building, think of constructing a plywood ramp and having it whether you can. If you can't leave it out there all the time, but you see somebody trying to come in, be like, “Hey, hang on, I got a ramp for you.” And pop the ramp out, help them up, leave it there until they can exit. And then now you are an accessible place and that person is going to tell all their friends about that. “Hey, look what these people did for me. It was amazing. They actually made it accessible.” Because too many times we get, “Oh, sorry. No, we're not accessible. Sorry for your luck.” And it's like, “Well, can we go a little bit further and try?”

Dawn Taylor

Right? Because how many people do you think like or do you know in Edmonton need accessibility?

Bean Gill

Oh, buddy. Mean just look at my client list alone It's over 300 people in my Wheelie Peeps group chat. We have like 110 people. But, like, statistically Edmonton as a population have a million. So guaranteed at least 10,000 people have disabilities at least. 

Dawn Taylor

That's a lot of people. But it's not just the person. It's their entire family. Yeah. 

Bean Gill

Think of moms and strollers, right? People don't think about moms and strollers and that that opens people's eyes up to be like, Oh, yeah, yeah. There's a lot of things we could do simply if everybody just was more intentional about it and actually put thought into their actions and as to why things are there. But again, that requires people with disabilities going into the able bodied world, accessing these services and making it known that, “Hey, I have value, I have worth, I'm here, see me, hear me, love me, accept me.”

Dawn Taylor

I adore you. I hope you know that. I love you so much, I. I want to thank you on behalf of anyone and everyone that thinks I know you have to. You got a bail right away. This is a busy woman. I hope you guys know how amazing this is that you guys even get to listen to being on this podcast because her schedule is nuts, bonkers, but so incredible. Like, you're changing, you're changing the world, and that is so huge and so powerful. And on behalf of anyone and everyone listening, I want to say thank you. Thank you for your vulnerability. Thank you for your honesty, your openness. Thank you for being willing to have these conversations. Thank you for wanting to challenge the norm. Right and what society is doing. I hope for people listening that your challenge, that your challenge to actually see this as a problem and even if it doesn't affect you personally, I bet my life it affects someone close to you. It is affecting people. And how do we as a society make it a little bit more inclusive. 

Bean Gill

I think a big way in taking a step towards that is removing the gap between able bodied and disabled. Right now, there's a gap, right? Right. If you think about it, if you're out there and you're listening and you wear glasses or wear your contacts, guess what? You have a disability. Right. It is awesome. Classes are normalized. It's normal to have eyesight impairments. I don't. My eyesight is amazing. My legs don't work like they used to.

Dawn Taylor

Right. So why is, like, one socially acceptable and one not?

Bean Gill

Exactly. So let's lessen that gap. And that does. How many eyeglass places do you see? How many commercials do we see on TV for glasses and contacts and stuff? How many commercials do you see on TV for wheelchairs or prosthetics? None. Because that's a stigma. So let's remove that gap. Let's put everybody on the same playing field and then go from there. And then you'll see that, hey, we're no different.

Dawn Taylor

Well, I think even, pay attention to what your stigma is, what your, bias is, right? Like. It's so interesting. People were like, “Oh, no, I'm fine.” I have no issues. And it's like, “No, no, no. Get yourself into a situation where you're faced with it and then pay attention to what the thoughts are that go on in your head or what your ideas are on something or any of those things.” I mean, we've talked about this where the first time we met in person, I was like, I was like, “I've never even thought about this.” Like, is this weird to sit like this or stand like this or do any of those things? And I was like, “Oh my gosh, this is like, where did these come from? How did I learn these weird ideas? And I know where and how and why, right?” Like it's our childhoods and TV and movies and all of those things. But I think we need to all just, one little tiny change.

Bean Gill

Yeah. And then they get to dismantle it. Like I had to dismantle all of my stereotypes and stigmas that I had towards people with disabilities even after I became it. Right. Like, my thought was that they are a burden. They need help with everything. They are on social assistance. They're poor, they're fat, they're unhealthy, they're unsuccessful. They're unsexy. They're unstylish. Yeah. These were the thoughts that I had towards people with disabilities. And now I'm sitting here like, But that's not me. Not at all. So I had to unlearn all these things. I had to dismantle all of this and be like, “No, I can be wealthy, I can be sexy, I can be stylish, I can be successful, I can be fun, I can be healthy, I can be fit and have a disability.” Yeah, all these things. 

Dawn Taylor

Because you're no different than anyone else. It's a choice. It is a choice. Oh, Bean. This was so fun. Thank you. Thank you, thank you. I'm watching the clock. We're hanging out with us today. And for listeners, I really hope that you learn something from this. If nothing else, say no when they want to put you in the wheelchair. Accessible hotel rooms say no when you want to go in the bathroom, don't park there. Like even these little things that you have no idea how much that could change someone else's life and someone else's day. Right? Smile, make eye contact, say hi. And if you do have weird judgments and weird things, stop being such a judgey pants. Get curious. And ask questions, right? Help people to help yourself understand people that are different than you. There's nothing greater than that. And just getting curious about people. So join us again in two weeks for another amazing topic. Please tell your friends and check out our show notes located at the TheTaylorWay.ca. We will definitely be putting information on how to contact Bean, her business, all of that fun stuff. And the show notes are there so you have no excuse. You can go read if you don't want to listen to every single thing that you recommended that you do. And please subscribe now on Apple, Spotify or wherever you listen to your podcasts. See you guys in a bit.