On this episode, I am joined by Rose Finlay. She had a catastrophic spinal injury as a teenager that left her as a quadriplegic, which has left her fighting ableism, government officials and to have her basic needs met.
We discuss the myths of disability coverage in Canada and how challenging it can be to find consistent caregivers. Rose has applied for medical assistance in dying (MAiD) not because she wants to die but because she isn't able to afford the necessary staff, medical care or essentials to her like a power wheelchair which puts her life at risk in alternative ways. In Ontario, it can take 8-10 months for the initial funding to be approved and often results in a denial, which leads disabled people who are already suffering to hire a lawyer to fight to get funding. MAiD is more accessible in her province than disability funding.
TW: sexual assault, suicide
Rose has a GoFundMe for a powerwheel chair: Fundraiser by Rose Finlay : Wheelchair1derWoman Needs a Power Wheelchair (gofundme.com)
Rose Finlay (@wheelchair1derwoman) | Instagram profile
Blog — W1W (wheelchair1derwoman.com)
Filled Up Cup - Unconventional Self Care for Modern Women
Ashley (@filledupcup_) | Instagram profile
On this episode, I am joined by Rose Finlay. She had a catastrophic spinal injury as a teenager that left her as a quadriplegic, which has left her fighting ableism, government officials and to have her basic needs met.
We discuss the myths of disability coverage in Canada and how challenging it can be to find consistent caregivers. Rose has applied for medical assistance in dying (MAiD) not because she wants to die but because she isn't able to afford the necessary staff, medical care or essentials to her like a power wheelchair which puts her life at risk in alternative ways. In Ontario, it can take 8-10 months for the initial funding to be approved and often results in a denial, which leads disabled people who are already suffering to hire a lawyer to fight to get funding. MAiD is more accessible in her province than disability funding.
TW: sexual assault, suicide
Rose has a GoFundMe for a powerwheel chair: Fundraiser by Rose Finlay : Wheelchair1derWoman Needs a Power Wheelchair (gofundme.com)
Rose Finlay (@wheelchair1derwoman) | Instagram profile
Blog — W1W (wheelchair1derwoman.com)
Filled Up Cup - Unconventional Self Care for Modern Women
Ashley (@filledupcup_) | Instagram profile
Welcome to the Filled Up Cup podcast. We are a different kind of self care resource, one that has nothing to do with bubble baths and face masks, and everything to do with rediscovering yourself. We bring you real reviews, honest experiences, and unfiltered opinions that will make you laugh, cry, and most importantly, leave you with a filled up cup.
Ashley:I am very excited. Today I have Rose Finley joining me. Rose is based in Toronto, Ontario. She's a single mom, author, keynote speaker, model, accessibility consultant, disability advocate, certified holistic health coach, and Reiki master. Today we're going to be talking about medical assistance and dying and Rose's experience. Thank you so much for joining me, Rose.
Rose:Thanks for having me, Ashley.
Ashley:Can we take it back to the beginning and can you tell us about your spinal cord injury?
Rose:So I was, it was nine days before my 17th birthday and I fell into a swimming pool. I was going to dive into the pool like I had many times before. And I just tripped my footing was off and I ended up going into the pool and not getting my hands up above me in time. So I hit my head on the bottom of the pool, broke my neck instantly, and I remained conscious throughout the whole thing. So which a lot of people find really unbelievable. But I remember floating to the top of the water, kind of waiting there and thinking, I wonder, How long it's going to take anyone to realize that I haven't come back up. Is this it? But life had other plans for me, and that wasn't it, and I was pulled from the pool. Unfortunately, I sustained quite a bit of damage to my spinal cord and I was left with paralysis in all four of my limbs. Thankfully, Over some time, I did recover some function in my arms, but not a lot, and it's led me down a very interesting path.
Ashley:That must have been so horrific, being awake for all of it, and I guess the waiting, did it feel like time had sort of slowed down, or did it feel like somebody helped you quickly?
Rose:It was weird. It was a weird moment in time. I was an athlete pre injury, so for me, like, I heard my neck snap, I floated to the top of the water, but, my whole body was tingly. So, even once they pulled me out of the pool, my response was like, Just give me a minute very much the whole, you know, walk it off mentality and it wasn't until I started feeling my lungs start to be affected by the paralysis that it was like, okay, call an ambulance somethings up. By the time I was in the back of the ambulance, I remember saying to the paramedic, so what do I do for a broken neck? Because I just, I knew, it was like, yep, I know what's up. So what's the plan of action from here? So I don't think I was really quite prepared for everything that Disabled life was going to entail. Of course. How could you be? I don't think anyone really can prepare for that, but yeah, it was scary. It was definitely scary.
Ashley:Absolutely. Did you find at that time at the beginning that it was easier to find, because I would imagine, say, having even like your house to be able to have your house set up for somebody who went from being able bodied to somebody who couldn't feel four of their limbs. Was it easy in the beginning, especially as a youth, to get some of the funding or some of the services available at that time?
Rose:Oh, this one's kind of a sensitive one for me in that I feel very passionately now that I have three kids of my own and all three of my kids have disabilities of their own. There's a huge discrepancy in the way we treat disabled youth and the way that we treat disabled adults. When you are a disabled youth, you can do anything you want. Despite your disability and da da da. And true, you know, and a lot of what I would call toxic positive. spaces, we still tote that narrative of you can do anything you want despite your challenges. And while that's true, I am very much a huge advocate of that. The system, here in Canada, at least, does not facilitate that. So it's like rah, rah, rah, we tote this narrative of, you can do anything and be anything you want, but There really is a cutoff for when they're going to stop helping you to. Accomplish those things or achieve those things. So, yeah, it was a much different experience as far as accessing resources. No, it was not easy. The difference then was that the burden fell mostly onto my family. The part that really made that a challenge for me is that my family's not very progressive in their mindset themselves. And so there is a lot of ableism. Even still to this day within my family structure, and that's why I am estranged from what is left of my family. Unfortunately, I've lost many family members to death. Mental health and addiction and all of those things. So,, it's unfortunate. But my family struggled, I would say more so than I did, with the transition.
Ashley:Which I think is so fair to point out, there is, I would imagine so much even on the most healthiest person, there must be so much mental health associated with going from one extreme to another, that there would be a grief involved. So I was born in the 80s to grew up in the 90s. The way that we talked about disabilities or mental health or any of it was. incredibly gross. Like we basically just taught that, your life is over if you can't do all of these things or you can't live up to the standard that nobody lives up to. So that we're all sort of growing up feeling less than, and then when something like an accident happens to basically be told, like, yes, on one hand you can still accomplish everything. But on the other hand, it's being like, But you're special and we're going to put you in this corner and just hope nobody looks at you and it's just sort of mirroring both of those must have been really difficult and difficult for your family, especially if they did have bias towards certain things.
Rose:We still have a long way to go when it comes to inclusivity. And I know at least here in Canada, we are really, you know, equality and inclusivity, but we are so, so far from actually ever. Accomplishing or achieving those things like it's insane but we've come a long way from where we were you know, in the 70s, there were still in specific states in the United States that had what was called the ugly laws. And while Canada isn't always as extreme as the States. We're basically just a watered down version in a lot of ways, and we practice the same things where we hid our disabled away. And even still today, there really isn't very much in the way of community resources and programs and things like that. You don't see a lot of disabled people out actively doing things like I do in the States. The States is still, it's more than 30 years ahead of us in that they have federal disability laws here in Canada. We still don't have that.
Ashley:Which is really crazy to think, especially because we do follow the States. Maybe in the Trump era tried to say that we were different and create this divide. But if they do something, we end up doing it. Mostly in like the negative things. So I do. I think that we do need to remember that we aren't so different and that North America really does sort of operate as one. So it is kind of silly that they would have stuff like that and we're so far behind.
Rose:It's still crazy to me that is a thing. And that disabled people in Canada, I mean, we have the Human Rights Code and In some ways, yes, disabled people are protected under human rights code but that's not an easy one to enact, so it would be better in my eyes, from my perspective if we had federal Laws that protect our rights as disabled people, but I don't know. We're not there yet, and I think that our government Largely uses it as an excuse to not have to put new legislature forward by saying well, you're protected under human rights code.
Ashley:Well, they do love to like divert from one pile to the other to basically be like don't look at the solution Look at our distractions in that sense, if there were people that maybe had never had experience with disabilities or don't have people in their life that this would affect, how can they get involved to try to. Help should they be writing letters to the MLA what would be something that would actually invoke change that people could feel like they were helping with
Rose:might not be the best person to answer that question because after the year that I've had and the things that I've experienced even just in my own interactions with government representatives this year. I'm feeling very hopeless, and I know that I'm not the only Canadian, but, I even look at things like our federal election coming up, and there's really no good options, and I don't really feel like our voice matters right now, which is not a good way to feel, but I feel like our democracy is dead.
Ashley:Well, and I feel like it's honest. I feel like a lot of people would share that opinion, It does feel like no matter what we do, things sort of get worse and don't get better. And there seems to be a lot of excuses, like obviously it's a very different issue, but in BC, they had a meeting of Congress or Senate or whatever they want to call about gas prices. And it was this whole, quote unquote investigation. And they found that there was like 18 cents that they couldn't figure out why was in our prices. But then again, after they're like, we'll figure it out, and they found out, and then nothing. So it does seem like there's always like a big hoopla, but no follow through.
Rose:Yeah, the ball gets dropped somewhere along the way. And we've seen that time and time again. So like, this year we passed... Bill C 22, which is a federal bill, and it is to basically put in place a federal disability grant, because they've projected that 22 percent of people with disabilities are living in poverty. And so this disability grant is then to help lift those people out of poverty and have, disabled people living above the poverty line because when we look into the fact that during COVID, we decided that the average Canadian needs at minimum 2, 000 a month to maintain and to live. But here in Ontario. Disabled people on the Ontario Disability Support Program are only receiving$1200. So make that make sense. People with higher needs, higher cost of living. Are receiving significantly less than what we have determined is the bare minimum.
Ashley:It doesn't make sense at all. And for Americans, I'm not sure what rent costs or even homeownership. In Canada, it is insane. In BC, a full house is anywhere between three and 5, 000 a month. And that's not even in a city. That's like in the Burbs. And then a home ownership for basically, like, I want to say a three bedroom, two story, like 2, 500 square feet is anywhere between 1.2 and 1.7 and that would be for like a fixer upper hasn't been updated since 1982, has a little backyard. Like it's insane.
Rose:So wild. Yeah, our housing here in Ontario is equally. as bad especially since the pandemic. It's concerning, especially for a lot of disabled people. A lot of people are becoming homeless and that's a very scary reality, especially for someone with more challenges. And the thing that I really struggle with is our society as a whole looks down on a lot of disabled people and thinks that they're not pulling their weight or useless or, all of those narratives where it's like, no, disabled people are very capable. A lot of them are even more capable than their able bodied counterparts because There's so many more moving parts to our life. I wear many hats on top of being a single mom, an entrepreneur living with a disability. Like, I am always juggling things. I am a very efficient multitasker. And it's because my life depends on it. There are things that I am capable of doing that able bodied people are not. However, I need certain specific support. And without those, I can't do X, Y, Z. So, it's really a no brainer, if you ask me because, you know, yes, disabled people need more support. But they are capable of contributing. We just need to be put in environments where we have access and opportunity.
Ashley:Absolutely, and I really don't understand, why it would be looked down, or why we can't get over the fact that, even if you did need more help, if you had the help in place, It's almost like this idea that people are taking advantage. It's like, just because people need help, it isn't taking advantage. I do think that it's, weird that this narrative hasn't been pushed forward further, but it's like, even if we take Say, people with disabilities, whether they're visual or not and put them against, say, mental health people. I feel like we champion people that need help with mental health, but we don't champion people with disabilities in the same way.
Rose:Well, I think that our government, our society in general, have this really sick obsession with making things trendy. And so it's like, oh! You know, we can use LGBTQ Oh, that's trending. Let's use this as our inclusivity, equality narrative. Oh, look, refugees. Let's use this. Let's use mental health. It's never consistent, because it kind of, it's like a flashbang. It comes out, we make a big deal out of it, and then that minority goes by the wayside, and they're forgotten. And so disability just hasn't been the trendy thing yet thankfully, in some ways. But in other ways, like, when I spoke out this year, I found myself in a situation. I was.. Sexually assaulted by someone that I was seeing at the beginning of the year. Prior to that, I was self sufficient, you know, yeah, life wasn't easy, but I was making it work. After being sexually assaulted, I wasn't able to work. My life kind of just Gobbled me up and became way more work than I was able to manage and that's how I found myself in a position where I needed to apply for ODSP disability support here in Ontario. The wait list to get that support was like way longer. I think it was at the beginning, it was six to eight months. And while I was going through the process, it then... It got longer. It was upwards of 10 months. And then, while I was going through the process I also learned that most people get denied the first time and have to hire a lawyer and go through an up to two year appeal process to get help. I'm sorry. How? What? Someone's like, Hey, I need help. And you're like, well, you're gonna have to get a lawyer and it might be two years.
Ashley:That is so horrendous., I've never met a lawyer that was, really helpful and did their job and, like, justified their paycheck. Can you get legal aid for that or that's something that would have to come out of pocket?
Rose:I think you can get legal aid, but that's another process in and of itself. And if someone is already seeking assistance because they're struggling, why would you then be like, Hey, you know what? We have a couple more processes you've got to go through just to get your basic needs met. Or we can offer you medically assisted death and that process is a whole lot easier.
Ashley:Which is really frustrating that MAID is offered first or makes it seem like a easier first option than a last resort, especially for people that that's not something that they actively are wanting first.
Rose:It's quicker and it's an easier process. Tell me that that's not intentional. Right.
Ashley:Can you tell us to sign up for MAID, what you have to do to go through it, like, what is that process like?
Rose:So, all I did was send an email to my doctor. Saying I'd like more information about the process. I am interested in exploring that and he came to my house because I wasn't able to get to him. So he came to my house. We did a two and a half hour. I guess meeting appointment where even though my doctor has been my doctor for the last eight, nine years, he knows my life very well. He said, okay, I need you to tell me about your life, you know, from birth until now pretend like I don't know anything, just tell me your story. He also had an intern with him, which was cool too. So I'm just kind of shadowing him to see what the process was like as well. I talked about my life and my challenges and, the way my life was and the way that it had become and all of those things. And then he told me more about the process which was, you know, now that I've signed this, application and we've done all this paperwork I have to wait 91 days. Towards the end of the process, I had to see another doctor, a physiatrist. Who just had to sign off, basically saying I had done the waiting period that my quality of life was in decline that I did have a permanent disability, those things and then when I was ready I just had to make a call to my doctor and book the appointment for final departure.
Ashley:It just seems so easy. Can I ask It
Rose:was very easy.
Ashley:where you are in the 90 day waiting period.
Rose:I'm done. My 91 days.
Ashley:Do you have a date to go through with it? What does that look like? After the 90 days has passed,
Rose:After the 90 days has passed, you can pick a date whenever you want. So the only reason that I was exploring MAID is because my quality of life was. Significantly deteriorated because of a lack of support, because I was stuck living in an area that didn't have proper infrastructure for supporting disability services, and so when I was working and self sufficient I didn't need to access those services. I could do it on my own. But being in a position where and it wasn't easy. I'm not saying that it was easy. The services were still severely lacking, but it was just easier to do it with more resources available to myself in terms of, financial. However You know, put me in a situation where I had to rely on government services, and they just weren't there. That said, there's also not public transportation, things like that. So ideally, what I needed for my quality of life to improve was to move to an area where those services are more readily available. However, areas like that would be more metro areas like Toronto. I wasn't in Toronto at the time. I was like an hour and a half east in a smaller suburban area. And Toronto really is kind of the hub of where Most of those services for disability are available. So I needed to get to Toronto, but Toronto was very financially inaccessible to me as well. And with applying for the disability support program, there was absolutely no way that they were gonna give me the funds to be able to make the move. And the waiting list for housing is... It's incredibly long. So there's another barrier to, okay, well, I need those supports, but the waiting list for housing is like eight years long.
Ashley:And disability friendly housing isn't always a thing.
Rose:No, it's very difficult. So what I did was took the initiative, started a GoFundMe and was able to raise enough money to come up with. What I needed to move to Toronto,
Ashley:which I'm happy that that part at least worked out. Can you explain what supports you need day to day?
Rose:So personal care support is basically the foundation of everything that I do. Without that, I'm not able to, meet my responsibilities as a single mom as a business owner all of those things. And keep myself well. Just point blank that's what I was dealing with where I was in the burbs, was that not having enough. Personal care support. I kept getting really sick from urinary tract infections that were turning into sepsis. And so Yeah, medical assistance and dying was a far better option than going septic because been there, done that and it's not a very nice way to go.
Ashley:No, absolutely not. can you explain what the government pays for disability care and what is the responsibility of the person?
Rose:So, the government offers a couple options. So what is covered is like a community care agency who can offer you PSW hours. You still have to fight to have enough hours to meet your needs, number one. My struggle was that. In the community that I was living in, these services were so unreliable. There were days where someone would just Not show up where you would get a call from the agency saying like, Hey, sorry, we can't get a hold of so and so. And we don't have anyone else to cover her shifts. So, you're gonna have to find someone else to help you today. And it's like that's like half an hour before someone's supposed to be here. Yeah, right? And so when you don't have backups. And so for me, not having that family support piece is like, okay, cool. So when my care providers don't show up, I literally can't get out of bed. I can't use the washroom independently. I can't get food like My basic needs aren't met, and if my basic needs aren't met, I then cannot provide care for my children. So, that wasn't working for me. The other option is that the funding that I have now for care is, still a government program but it's like a self managed care program. So, Basically, the government gives me an allotment of money to hire my own care workers, which works out really well in places like Toronto in smaller communities like where I was living. Very difficult to hire people still the same people who work for the agency are then those same PSWs that will work in your home. So, unreliable people, people who no show, people who steal, people who, use drugs recreationally and then forget to stop using them when they come to work. You know, just a really mixed bag of low quality workers. And when you're working with a vulnerable population like the disabled, I feel like those regulated care providers should be better quality.
Ashley:Yeah, absolutely. And ensured that they're properly trained health professionals. I just couldn't imagine the Stress and the trauma of the whole situation that this must make it all worse to know like it could be that I have safe people coming into my house all the time, and I'm in this environment where we're making it work versus the day to day stress of am I going to have somebody help me today? What's today going to look like? To not be able to plan your day in a safe manner must be beyond just stressful and frustrating.
Rose:It's really hard I find for myself when it comes to my self esteem, it's just like, really, like, that's how little I'm valued. It's a value statement, and I really struggle with that because... It's not true. I can contribute so much to the world and to my community, and I am worth more, and I am worth quality care and it's not my fault, and I shouldn't feel bad that I have extra needs, and I shouldn't feel like I'm a burden because I am willing to contribute, I'm willing to pull my weight, I'm willing to do all of these things but I'm just not given to Easy opportunities to and so I've been very privileged and very fortunate to live the life that I have and to accomplish, great things and I have empathy for members of my community that have not had the same stroke of luck that I have or perhaps just You know, having met the right people or don't have the same amount of determination. That said, they're still deserving of equal access and opportunities. So, that's something that I've been very passionate about for the last few years is how do I get More members of my community to have access and to be able to,, chase their dreams and still live a quality life like instead of, you know, if we're struggling to get our basic needs met, we're not afforded the ability to dream and to really set goals or achieve goals or like any of those things because how can you when and that was that was something that this year really made me more aware of is just. How little you are capable of doing when your basic needs are not met,
Ashley:We all deserve to have that childlike wonder again. We always kind of talk about with able people. It's like, once your kids grow up and are out of your home, like what's going to be next for you. we give able bodied people the opportunity of like. You could start this whole new life and you could do all of these things. Well, there really is no reason that people with disabilities can't be the same. Once your needs are met, it may not look like you're yachting around the world or doing the same things, but it doesn't mean that those options aren't less valuable. It is really frustrating that It seems so unattainable that they don't even try to consider what those might be.
Rose:Absolutely everything that I do with a disability is astronomically more difficult. Something that was really highlighted for me this year, just in moving from the suburbs to the city and that's like an hour and a half move. But as someone who is physically incapable of packing boxes, moving boxes, loading, moving trucks, driving, moving trucks, all of these things. It just, it really made me realize that, if at minimum. Disabled people didn't have to fight to have their basic needs met. It's not like our world is really full of wonderment because everything is so much more difficult just to do. So it's like, there's just so much more merit, I think, that should be awarded to small achievements, or really big achievements for those of us with disabilities because literally everything. Takes more effort and I'm not saying like, hey, we deserve a hero cookie, but for some moving from the burbs to the city is no big deal, you know, okay, cool Yeah, moving still sucks and it's a lot of work that everyone can do it It's not really no one gets a hero cookie for that You know what? I mean? Not saying that that I deserve a hero cookie for doing that What that meant for me the amount of effort that that took for me like I really am like wow Good for you, Rose. You did something that was a lot, that was heavy, but you pulled it off. And so, well, for everyone else, like, yeah, I moved. For me, I'm like, I moved. Like, I moved. And, it's an entirely different perspective. I just think that we shouldn't have to be fighting for basic needs. And the fact that, in going through this process, I saw how much of a fight it is even just to get disability support up to like two plus years plus hiring a lawyer just to be able to put clothes on your back and food on the table. It's unacceptable. It's unacceptable. And it's just, this isn't my Canada. And I guess that's where I feel very like, well, wait a second. This isn't like. The Canada that I learned about in school growing up, I learned to trust my government, to feel like my fellow Canadians had my back we paid taxes, and the reasons we paid taxes was because, we took care of Our elderly and are disabled. So to now be an adult and to be in that position where I need those supports and to realize that that's not actually what's going on was very eye opening for me, especially as a taxpaying citizen. We think that we pay into social programs. In case we ever need them but as someone who found themselves in a position to need them, and I'm not in a position that can be disputed. I don't have an invisible disability. I don't have a disability that, a doctor's like, well, me, I don't know. No, I'm very disabled, and I'm still not eligible for those supports.
Ashley:When you're involved in any system, whether it is disability, whether it's family court, whether it's anything sort of in the system, I find that From far away when you're looking into it, you're like, these programs work great and like we were raised, we support all of these people, we take care of people. Once you're in the systems, I feel like we realize what a sham they are and how a lot of them are so broken and how there is so much red tape that it makes it so unbelievably hard or expensive. That it ends up being like you do lose faith in our government and you do lose faith in humanity a little bit because it just seems like the common sense answer is always the hardest answer or not the one that they use most logically, so it kind of does feel like bashing your head against a wall that I'm sorry that you had to have that experience and I just wish that other people that maybe haven't would realize like how much of a sham of system can be.
Rose:Well, oh god, and this one, ugh, this one's tough for me, but throughout this process, I, did the meet with the MLAs, which here in Ontario is an MPP, MP, that sort of thing and I met with Erin O'Toole, he was the MP, but he was also the leader of the Conservative Party at the time and I think he was retiring. And so I spoke with him. And the meeting really didn't go anywhere. I mean, he was like, yeah, I'm leaving office. Someone else is going to be taking over, da da da. But he was polite and that was fine. He did say that he was going to help arrange a meeting between him and I and the local MPP at the time, who is still the local MPP there. He has a son that was born disabled and so part of his campaign, you know, are the things that he stands for or spoke about in his campaign days was that you know, disability is something that's very important to him. The night before I was supposed to be meeting with the MPP I was very heated. I had some things going on in my personal life, obviously. This was all also going on very publicly for me. I was being attacked online. My ex's family went on the attack on social media. So it was just, I was really upset. And... I said some things in a way that I'm not proud of, but my facts remain correct. So I had said on this live stream and someone recorded it and sent it to his office which I'll get into after, but I said, you know, I'm meeting with my MPP tomorrow. He is a privileged white man with a disabled son who likes to act like he knows what's what about disability because he has a disabled son. Meanwhile. His disabled son has never had to live like the rest of us with disabilities because his dad is a privileged white man. And the MPP declined to meet with me.
Ashley:Which is very frustrating because again, we're all entitled to our opinion. It is one of those things that you can't paint all disability people the same. So again, he can't. I don't necessarily think that his experience with his son from the perspective of not having needs met is going to be the same that to feel like that and to not hear it in that way. It's like you have to represent all people you can't just represent the people that you feel like or fit into your narrative or anything else and I feel like too many politicians are like that and don't want to see the big picture or want to ignore things. Because it feels easier to do that.
Rose:Well, and, it wasn't a proud moment for me. Because it was also a third party call with another organization that was helping me advocate. That's not how I want to be seen. But, the other thing that really kind of made me, like, shake my head or kind of go just another out of touch politician is like, Look at what I'm going through. This was all very public. This, maid campaign, and all of that you know, in the media. Like, I was being attacked. I was desperate. I was also living in a situation that had the potential to end my life, and I had two small children in my care. I was, very clearly in a position where acting irrationally was It's totally explainable. So the fact that he couldn't see that as, this is a mother like with children who is very desperate, like, yeah, I'm angry and I have every right to be angry. So the fact that he couldn't really see through the words and see the emotion and, where that was coming from just really kind of reaffirmed for me, he's just another out of touch politician.
Ashley:I can completely understand where you're coming from in that sense that you have to take meetings, especially when they're already on the books with people, whether you like them or not, whether you can see where they're coming from or not, and try to get down to the root cause, because we all have those days where we say things with that we're like, Oh, shit, I shouldn't have said it that way. Our reputation can't always be the worst day of our life forever and ever. Like, things change. Situations matter. Like, it's unfortunate that he was so petty.
Rose:You can't claim to really advocate for a population if you're not willing to really kind of get down in the dirt with, the people who are really, really struggling or really, really desperate or the people who really, really need your help. If you're not willing to listen, then you're not the right person for the job.
Ashley:Now, you had mentioned that you were getting a lot of hate online. Can you tell us a little bit about what that was like or what the hate was about?
Rose:Oh my goodness. I'm also in the process of going through a, Very lengthy, high conflict divorce so my ex's family were very vocal. My ex had to kind of tell them like, you're gonna need to, need to stop that and simmer down because the police got involved, it got really kind of ugly that way. But asides from the personal drama Yeah, that one's a tough one and I think this is one of the reasons why we struggle with advocacy when it comes to disability rights in Canada is because the disabled community is so victimized that they even attack each other. So not only was I attacked by people. Very conservative mindset why should the rest of us have to pay more for the disabled, you know? You guys don't contribute, you don't do anything, da da da, people who just really don't want to have to pay into social causes. They attacked me of course there's some people in the disabled community who some people who aren't as disabled who are like, I'm getting on just fine. You just got to make do with what you got. It's like, for some of us that doesn't work, like, good for you, great that the system's taking care of you. The other thing that I learned too, is that the system is not unilaterally the same. So, some people have easier access than others, and there's no explanation for why.
Ashley:Which must be really frustrating, that they just get the right person on the phone at the right time. Yep. To be able to push it through.
Rose:The process is not, it's just, it's not congruent.
Ashley:I would imagine to some degree, like all of Canada, there seems to be massive staffing challenges where You don't get trained properly for the job. A lot of the time, orientation, things like that they just aren't what they used to be. So it's like you get somebody who's maybe been doing the job for 10 years on the phone and they're able to go, you know, this, this, and this let's push it through. And then you get somebody who's new that doesn't know, and hasn't had the ability to get trained and is in this sink or swim position in the position that they're in. And they don't know. And then you get put on a pile. That it does seem ridiculous that these gaps aren't being prioritized as like an emergent situation so that we do have people that all can consistently offer the same practice.
Rose:There's just, oh my goodness, there's so many different, little holes here and there, everywhere that I found along the way and they're hopefully things that I will be able to help advocate for a change for in the future, but just needed to kind of take a little break after all this heat but the system creates dependency and I say that because so many people attacked me for, needing help and blah, blah, blah, and why should we be paying out more for you to be on the system and it was little things like, okay, well, so I'm not asking the government for like, oh, fine. Don't, don't give me the money then. I'll figure it out. I will figure it out because I've always figured it out. Fine, whatever. But. Can the government then just pay for my medical supplies, you know, my wheelchair, my, prescriptions, like, can they just cover those for me, please? No, you have to be financially dependent on the government for them to cover your medical needs. We'll make that make sense because if I'm then going to work, right, like everyone else, that's fine. But the government's not going to cover my medical needs. What? Like right now, I need a power wheelchair because I have a manual wheelchair. So the government will cover 75, 000, which leaves me with an outstanding bill of like 8, 300. Where, sorry, what? You want me to come up with an extra 8, 333 just to walk? But that's free for everyone else.. I don't have the same access to employment. I don't have the same opportunities for employment. My life takes longer, like, it takes me four hours to get up and get dressed and have a shower in the morning, where it takes, you know, everyone else, what, 45 minutes. So I have less available time in my day to work less available energy, because living with a disability takes more energy. But you want me to make... More money than everyone else because I have to cover more costs than everyone else because I have to pay every time I have to go pee. I have to pay for medical supplies. Like make that make sense for me.
Ashley:No, it doesn't. And I don't understand. Why for them, it would be such a divide of you would have to be poor and suffering and not want to do anything for yourself, which is sort of the, stereotype that they like to put on people with disabilities. Yep. But if you're actually not fitting into that mold, then it's going to be even harder because you don't like it really isn't logical I don't understand why there can't be a happy medium or why it's not on an individual scale. Instead of one holds fits all.
Rose:Sorry, but like post secondary education. Sorry, I'm going to get choked up about this because this one's really personal for me. Post secondary education. is not as accessible to people with disabilities as it is for able bodied people. So, already, we don't have access to education the same. Which means we don't have access to, those. Better paying jobs for higher educated people. But then you want our life to cost more, but you don't give us the opportunity to even earn more. Like you make it so much more difficult. It just, it's like the inequality there is so, so gross.
Ashley:even a minimum paying job in Canada for,, a working family, couple of kids, everything, even minimum wage wouldn't pay for, bare minimum anything. So like you said, like it is absolutely ridiculous. to expect you to pay double there's no way that you can do that. Even the highest paying job could still be a struggle in some economies that it's just, it is unrealistic that. With the lack of being able to have the education, the lack of just different things, the expectation just doesn't make sense.
Rose:No, this is a first world country. We should not be fighting to have our basic needs met. There are other countries in the world doing disability so much better. And the saddest part for me just on like a cultural level, there are third world countries Doing disability better than we are culturally as a society. That's so sad.
Ashley:It's just mind boggling. And what I don't understand, throughout the whole entire world, if we know, like, not pulling any examples, but like, say France had the best... Education system in the world and it's model could easily be implemented other places. I don't understand why I don't know. There's like an ego of the different countries where they're like, I insist on doing things my way instead of seeing like in France, they have great education I don't understand why we don't copy other countries and what's going right for them. I don't understand in countries like the U. S. or in Canada, where we do have the ability to do all of these things. I don't understand why we don't copy places that are doing it right and still insist on doing ours in the most broken way possible.
Rose:Profit over people. A hundred percent. That's what it boils down to. Even when you look at. The way our social support programs are set up, it's like anyone who doesn't think that's not, like, that's a business for the government. That's all that is. Like, even the way our medical equipment here in Canada is so expensive. Why? Because the government programs are funding a lot of it. When the money... It's just within the government, just exchanging hands from like one pocket to another pocket to another pocket to another pocket. They're making money on their money. That's all it is, you know? And so if you make medical equipment really expensive, and then you spend government money to buy the expensive equipment, well, like, see how it's like, okay, cool. But for those of us that aren't using the government money to buy the equipment, it makes it too expensive for the rest of us.
Ashley:I know Canada, especially, we love to champion on that, our free medical care. But so much of it really is privatized. Yeah. And they don't advertise that it's privatized. But it really is. So many things here are out of pocket. Whether it's prescriptions, whether it's medical equipment. Like there's so many things that don't actually fit on here.
Rose:There's so many more tests. Yeah. Like we're paying for things. You know, casts. Oh, how long have we been paying for, like, fiberglass casts and fracture clinics? A really long time. I had an injury at 12, and you still, like, you had to pay for casts. Yeah, it doesn't make sense. It's
Ashley:crazy. In a perfect world, what changes would you love to see implemented in Canada?
Rose:Oh, goodness. I'm really, I'm struggling. I've been feeling very lost the last little while after going through this experience, I think it's going to get worse before it gets better. I don't want to say that I'm hopeless, but I just don't see how things could get better. I mean, ideally I would love to see a world where disabled people, we're not the same as everyone else, and I think it's unrealistic to say like, oh, I'd love to see, you know, the day we were treated like everyone else. No, that doesn't work. We're not like everyone else. That said, we do deserve to be treated with respect, and we don't deserve to be fighting for our basic human needs to be met. And so, just in general, and not even, you know, on the Canada scale, but on a world scale, I think that there is enough to go around and there is no reason that anyone lives in poverty, but we're so far away, and what we're seeing right now, even with what's going on in the Middle East, we are so far away from world peace or equality, and that's kind of all this current world conflict is really kind of reaffirming and everything that I went through this year reaffirmed for me is that we are so far away from equality. And maybe there's value in that. Maybe that in and of itself is, the lesson is that. We need to truly acknowledge how far away from equality we are and how much work there is still to do instead of, we've got a liberal government here in Canada that likes to, you know, rah, rah, rah, equality, inclusivity, and all this great, happy, feel good stuff, and it's like, meh, no, no, sir, we don't have a whole lot to be feeling so happy about. We've been, doing this whole pat each other on the back and say, Well, we're doing a great job, look at us! And it's like, no, we're failing miserably, I'm sorry. This is not the time and place to be congratulating each other on how hard of a job, or how, you know, hard we're working, or how good of a job we've done on inclusivity. And accessibility we've got a long way to go, so maybe there's value in recognizing that, who knows, but that's kind of the cold hard truth of it.
Ashley:I think you're right in the sense that there is value, maybe in realizing that some of the things that we believe to be true really aren't true, and that we are so much farther away from things than we thought that they were. And maybe that we shouldn't be. So not complicit, but like, I don't know, comfortable and believing the things that we're told to maybe dig a little deeper and ask those questions and to not just believe everything that we hear and to really, you know, it's kind of frustrating in Canada that we don't have access, to the news we physically cannot log on and read a newspaper on social media and eventually Google. So it's like, we're getting limited information as it is, and maybe to question, question what we are seeing and how we're seeing it.
Rose:The other thing that kind of came up for me even more recently on social media, is how many people will just flip to a government website and go, blah, blah, blah, blah, blah, read what the government website says, come back to my story and say, you're spreading misinformation, this is all lies, this isn't true, because the website says x, y, z, and it's like, really? Hold on a second. You just point blank believe anything and everything the government says because it's the government, but you're discrediting the people, and I'm not the only person with this similar story of maid., there's a whole population of us that are saying the same thing. And you're going to sit here and say, Nope, it's not true because the government said it's not true. Nope. And it's like, wow, okay, I think we really need to listen more to each other, and maybe then we'd have a better chance of figuring it out, the reasons, the purpose in life, the why, the how, All of it, how we live as one, we probably have a better chance of figuring it out if we figured it out on our own, instead of just blindly following leadership that we've been indoctrinated to follow.
Ashley:Decades ago, there was such a community spirit. Everybody knew the people on their street, there was value in that. I feel like as time has gone on, we have started becoming more, I don't know, solo, you interact with people in your household, if you're close with your family, but there isn't that like, Oh, I wonder, you know, what's going on with my neighbors or my coworkers. There just isn't that. community like there used to be and we're so divided.
Rose:People don't hang out on their front porch anymore.
Ashley:Exactly. That it's like we do have to get back to where we care about each other and that we create that support systems within our lives and within our communities instead of it being this like I don't know, even us versus them, but with everybody.
Rose:Yeah, I totally agree, and I don't know what the answer is, and I was talking to one of my friends today, and she's from the Philippines, she's new here, and she asks, like, about, Canadian culture, and the stories I tell about what it is now compared to, well, when I was a kid, it was this, and you know, it was different, it's strange to her, coming from somewhere that's very culture rich that the culture has changed so much, like, she's just like, really? that's strange, like, I don't understand that. But it very much feels like Canadian culture, what was, is no more, like, what is our culture? I don't know.
Ashley:Maybe that's a question that we need to ask ourselves more. What are we here? What do we want to be known for? And really come back to it, because it definitely isn't like when we were kids.
Rose:Everyone's creating new traditions. It's like, why is that a thing? Like, oh, because we realize tradition's, like, dead. And it seems to be a very millennial thing. We're all like, oh, we're creating new traditions. And it's like, well, that's weird. Because we had a whole lot of traditions. When we were little, and now they're gone.
Ashley:When you had broached the subject about Maid with family and friends, I know you said you don't really have a strong, family unit. What was the reaction that you had gotten? Like, were people supportive of it? Did you get a lot of hate from, the people that you know about it?
Rose:No, everybody who knew me and knew my situation like understood obviously, everyone was kind of just like, fingers crossed that this creates enough momentum to change things. That was kind of, I think, what a lot of people were hoping for myself included. You know, even my doctor, when I was filling out the application, he's like, you're gonna take this to the media, right? You're gonna try and try to get yourself out of here, try and do something. And I was like, you know, I'm gonna try like I've got a pretty strong spirit in that way. But we all knew it was a very serious gamble it really sunk in, like, the, gravity of the situation, I have a letter from my doctor that says that if I continue to live this way, in this environment, it will lead to my death, and just, seeing that on paper, like, all of it you know, signing the maid application, this is really serious, and this is really messed up, and it's even more messed up that, This is possible in my country.
Ashley:It's, it's so beyond mind boggling and frustrating that again, it is an easier service than accessing whether it's disability rights or mental health services. There was a case, I think it's going back a couple months, but there was a lady that went to St. Paul's hospital in Vancouver and she was looking for mental health. Services and the first thing that they did was give her a pamphlet for MAID that I just don't think that it should be a first option for people. I feel like it should be situationally based, obviously, but like, a last resort or just not the first thing offered to people. How heartbreaking to be like, I need help, and they're like, have you thought about dying? Like, it just seems like a bad, like a bad walk into a bar joke, you know what I mean?
Rose:Yeah. No, it was. And that's the thing is, in no way did I want to make it sound like Maid was offered to me. I called my doctor and asked about it. My doctor even after explaining the procedure to me and like how it happens, he looked at me and he's like, I do palliative in the area, I'm usually the guy but I'm telling you right now, I don't think I can be the one to do this for you. He said I just I've been, and I get choked up, it's like, you know, I've been with you through too much, you know, I was there, I birthed your children, like, I, don't know that I can be. The one to do this for you. I said, I understand. I respect your professional boundaries. And I appreciate, you know, you even walking down this path with me. So very grateful for him as a human. He is one of the good ones. But yeah, it's, it's been very emotional. It's been an emotional year. It's been a lot.
Ashley:Have you hired a lawyer to try to sue to get the rights that Ontario should be providing?
Rose:No. Do you think that that will be something that you will try to do? I don't know. I don't know. We'll see what 2024 brings. I'm an artist at heart. That's kind of like what I want to get back to. The social justice warrior in me, man, she's tired right now. You know what? I can never say never. Because I often surprise myself. But it's a possibility. I just don't know. I want to do a little bit more of like the creative stuff for a little bit. But if I can do the two together, I mean, obviously that's the perfect balance. So I don't know. I don't know where we go from here. It's not the personal battles that really get me fired up. It's the ones per community. And seeing how many things within the system are broken and need to change. And I know that they're not only just affecting me. You know, I spoke with my OT a couple times throughout the process. And several times she said to me, you know, keep going. You are a voice for so many and you don't even realize she said, so many of my clients are facing the same problems you know, with not getting funding and not being able to afford their equipment and their supplies. She said, you're fighting for everyone. So, you know, keep going.
Ashley:I really do appreciate that you are bringing awareness to this and that, you know, it's never easy to. Share your story, especially because there are so many keyboard warriors that are quick to spread misinformation or spread hate about it. So I do think that it is really powerful that people are hearing this and hearing this from you and whether it ends up working in your favor the way that we hope that it does hopefully the movement will be able to enact change for other people as well.
Rose:There's power in numbers.. The more people speak out and share these stories and try and raise awareness, and I'm very It's a little bit repetitive in repeating the statistic, but the average Canadian spends eight to 11 years of their life with one or more disability. And so, just because disability rights aren't your fight today, because it doesn't affect you. It will affect you or a loved one at some point in your lifetime. And I promise you, that's not when you want to start the fight, because in your time of need is. Not the time to be spending your energy doing this kind of stuff. It's very taxing.
Ashley:I really appreciate you having this conversation with me today. If anybody is looking for you online, can you explain where they can find you and do you still have a GoFundMe active?
Rose:I do have a go fund me active. This whole power wheelchair situation is kind of my last hurdle for getting access to community where we are even accessing our local food bank. They have a waiting list for delivery. So our only way to access would be in person and without a power wheelchair. I'm kind of stuck like a sitting duck. So I do have a new go fund me going for that.
Ashley:It'll be in the show notes as well for anybody listening.
Rose:Okay, perfect. And yeah, if anyone wants to find me on social media you can find me usually under the handle Wheelchair Wonder Woman. I'm on TikTok though I haven't been on a whole lot lately I'm slowly finding my way back to social media but I'm also on Instagram or my website's at www. wheelchairwonderwoman. com. I have a blog over there. That I will find my way back to now that I'm kind of more settled and, finding my creative flow again,
Ashley:I look forward to seeing your art. Thank you. Thank you so much for having this conversation today.
Rose:No, thank you for being open to this conversation today.
Thank you so much for joining us today for this episode of the filled up cup podcast. Don't forget to hit subscribe and leave a review. If you like what you hear, you can also connect with us at filledupcup.Com. Thanks again for tuning in and we'll catch you in the next episode.