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Mia: Hi everybody. So excited to have everyone here today. Welcome to osTEAo, that's with capital TEA where OsteoWarriors in treatment and recent survivors spill the tea on all things osteosarcoma and cancer from the adolescent young adult patient perspective. Listen in on our honest and personal conversations about our osteo experiences and stories, and who knows what else we tend to get off track. This podcast discusses all aspects of the young adult cancer experience in a conversational format. Audience discretion is advised and make sure you like and follow MIB Agents on social media for all of the intel and Hot Goss. Sammy, what do we got coming up?
Sammy: Okay, ready as we kick off today's episode of the fourth season of osTEAo, spilling the Tea on all things osteosarcoma, an AYA cancer podcast. We would like to begin by thanking our incredible sponsors, the Moore family, who generously support this podcast.
We are so deeply grateful to the Moore family for their support. We couldn't do it without you. And now, let's get on with our third episode of the season, brought to you by the Moore family. We'd like to begin with a couple of announcements. So, FACTOR is in Salt Lake City, Utah in June is approaching very quickly. We are so, so excited. With that being said, FACTOR 2025, early bird registration is now open, so make sure you get on that as soon as possible. We hope to see everyone there. We have a lot of exciting things to look forward to at FACTOR, including FACTOR HQ and all of the really cool activities that we have set up. So, we hope to see everyone there, all of our osteo friends and family. We also have OutBidding Osteosarcoma coming up, and that's March 17th through the 31st. And there are a lot of luxurious hotel stays, beautiful Chappellet wines, artesian pottery, and more.
The hotels that are up for offer during this auction are the Boca Raton in Florida, The Sanctuary at Kiawah Island in South Carolina, the Enchantment Resort in Arizona, the Tides in Virginia, and so many more. So, if you're interested, please look into that. That's on the MIB Agent's website. And as always, we'd like to request that you guys submit your ideas for topics. We'd love to hear the viewer feedback. And if there's anything that you think is worth having a conversation about or you really want us to go over, please don't hesitate to reach out in any form of social media that you feel comfortable with. And Mia, back to you.
Mia: The FACTOR HQ is always so much fun. All the snacks, we've got TVs, video games, everything in there. We have art supplies and art classes. If you want to get out of the scientific presentations and everything and you want to go into a space that's all OsteoWarriors and just all fun activities, that's where to go. I am super excited for FACTOR this year, and I really hope that I get to go. I'm planning on it, so we'll see. And so, without further ado, welcome back everyone, and let's transition into, so what's the tea? I'm like literally, we're going to go around and share what we're drinking and review it and rate it and just tell you a little bit about ourselves. So I'll go, I'll start first. My name is Mia Sandino, your co-host, and I am 26 years old, which is crazy to say.
I think this is the first time recording that I'm saying that. I am from Los Angeles, California, and I am currently taking cannabis studies courses at Syracuse University in an online program. I'm really enjoying it. I was diagnosed with osteosarcoma in my right proximal tibia in September 2018. I have had every single chemo regimen, and every single immunotherapy drug under the planet it seems, and I have a right limb salvage. I've had a thoracotomy one each lung and over 35 now ablations to freeze and or burn tumors. So, over a hundred of my tumors have been taken out that way. And I am currently drinking this little Arnold Palmer. It's not sweet, which I really appreciate. I like my drinks on the drier side, so I'm going to give it a nine out of 10. It also comes in this super cute little can. I don't know. I'm obsessed with it. Anyway, Sammy, what do you got today?
Sammy: That is a really, really fun can for me. My name is Sammy. I am 22 years old. I'm an OsteoWarrior from Southern California. I would say about an hour away. I live in Redlands, California. I'm currently pursuing a degree in psychology, and I spend my free time co-hosting this wonderful podcast and also being the President of the Junior Advisory Board 2025, which I'm super excited about. I was diagnosed with osteosarcoma in August of 2022 in my right proximal tibia. Prior to my diagnosis, I was a division one cross-country runner, so I was very, very active up until the time of my diagnosis. Following my diagnosis, I underwent a lymph salvage surgery in November of 2022, where they placed an internal prosthetics. So, I do currently have my little rod in my leg. Her name's Tiffany. I know Mia has a really fun name for hers as well. We have Tiffany and Rodney.
And after my surgery, I continued treatment until May of 2023, and that's when I rang my bell. And I've been in complete remission ever since. And right now, I am drinking. I usually do cranberry juice if you guys tune in often. I love cranberry juice, but this time I decided to do almond milk, so it's like Silk vanilla almond milk. I am not usually a milk drinker, but I really, really like almond milk. I would say it's like 7.5 just because it wasn't my top choice right now. But I was kind of pushing it a little bit, so I just kind of served myself whatever. And it's super-hot, as Mia knows, in California, it's really hot. So, I cannot have tea, but I really like it. And yeah, me and my milk. Izzy, if you want to go next.
Isabelle: Okay, cool. I'm Izzy. I'm 25, going to be 26 soon. Scary. I'm from LA. I've known Mia for so long, 20 years since kindergarten. We were lifers together and right now I am a podcast producer at a comedy podcast, so very familiar with that world. And basically about six weeks ago I was riding my horse and she got scared, flipped over and I ended up breaking my pelvis and my nose. So, I had to get a cadaver and a bunch of pins put into my hip, both left side and right side. AndI'm currently not walking right now, but we're working on PT for that and everything. And I am drinking a really expensive matcha that is not very good, so I'd probably give it a six rating.
Sammy: Yeah, that pricing tracks. But I mean, I enjoy matcha here and there too, so every once in a while, we kind of got to splurge on ourselves. So always, always, always. And Inaaya, do you want to go ahead and go next?
Inaaya: Yeah, sure. Thanks for having me. Hi, I'm Inaaya. I'm 16. I'm a sophomore in high school. What else? I live in Naperville, which is a little outside Chicago, maybe like 45 minutes away, which isn't horrible if there's traffic. Yeah, what's going on? Nothing much, I'm just trying to figure out what to do after high school. I have my swim season starting next week. I have driver's ed going on. I haven't got my permit yet, but yeah, that's a hot topic right now - when I'm going to get that. I had osteosarcoma when I was 11. I did nine months of treatment, got a limb salvage, and then in 2023 when I was 14, I had osteosarcoma again, and then I ended up amputating last April. So, I have a hip disarticulation amputation. So basically, because not many are familiar with it, my surgeons, they removed my femur from my hip, so all I have on my right side is my hip and my pelvis. And yeah, so I'm really grateful to be on the Junior Advisory Board. And yeah, no, MIB Agents has been helping me out since I was 11, so it's kind of a full circle for me. And yeah, I'm just so grateful to be a part of this group. It's great. Yeah, my drink of choice is not that very interesting. It's chocolate milk. There's some ASMR, honestly, I'd give it an eight out of 10 because I went downstairs and I made it today. And that's it. Thank you so much.
Sammy: You can never go wrong with chocolate milk. I'm not going to lie. You and I both drinking milk right now. Just two different kinds.
Inaaya: I'm definitely not often a milk drinker. I used to only drink it with cereal, but I'll go for hot milk and it's cold.
Sammy: They used to always say that milk is really good for your bones and stuff. After all this happened, I thought to myself, I was like, maybe I didn't drink enough milk as a child. I remember I was, yeah, either. I think it was not enough, though, because I used to be afraid of milk. I still am always like, I'm sorry, this is off topic, but I feel like it's important, it's relevant to the topic of osteosarcoma. Does the milk help us or not? Because when I was little, I used to always drink the rotten milk, so I was traumatized by it, didn't drink enough milk, and then this happened.
Inaaya: Are you drinking a lot of milk, Sammy?
Sammy: Oh,I was the designated, I'm the middle child. I was the one who would test the milk to see if it was good or not.
Mia: Your designation,
Inaaya: Better testing milk, guys.
Sammy: It was my job. Thank you both for being here. It's so nice to meet you. I'm so glad to have someone, too, who's kind of outside of the sarcoma community but still understands the disability part of it. It's so important to hear how all of these experiences range and how accessibility is so different to different people. Our first question is, what does accessibility mean to you? I don’t know, if you want to start us off, Mia, tell us what accessibility means to you and what your perspective is when you think about accessibility.
Mia: Yeah, I mean, when I think about accessibility, I mean, it's such an umbrella term. I mean, it's basically just stating that a space is accessible to most groups of people or certain groups of people, and that's what we want. But unfortunately, that's not how the world is built, and that is something that I learned predominantly after I was diagnosed, and it just kind of is this buzzword almost of like, oh yeah, we're a space that accepts most people. We have a website that has videos. We have transcripts of the videos. That way, people who are deaf can follow along, and people who are blind can follow along with sound. Things like that. A lot of people see that little person emoji kind of on a lot of websites now, and those will give you the accessibility features of each website, which I think is great and amazing progress.
But a lot of the time, the world around us, not online, is inaccessible. And I feel like that's really frustrating, and people don't expect that. For people who are young like us, whether it's a new disability or something that we've had forever. There are also invisible disabilities. If I'm wearing pants and I have a very, my limp isn't noticeable anymore, so I get quite a lot of dirty looks if I'm in a wheelchair at the airport, and they're like, oh, you're taking it from these older people? And I'm like, no, there are tumors in my lungs and I have 15 inches of metal in my leg, technically 19 inches now that I have the screw in my ankle. So, if you really add it all up. But yeah, so to me, accessibility is just being able to safely, for lack of a better term, roam about the cabin in public and be able to enter a space that most people would be able to enter.
Sammy: Yeah, that's a really good point. I think, again, accessibility and disability are umbrella terms. There are so many things that fall under it. In our case, I feel like how you're saying, it's kind of just the world around us. Can we get about the way that we need to? Because I know a lot of the times when I go to plan activities or I know that I'm going somewhere, one of the things that now I have to add to my planning is can I get to this place safely or is it going to be comfortable for my internal prosthetic? Can I walk here? Is there an elevator? There are so many things that other people have the privilege of not thinking about, that for us, affect our day-to-day lives. So yeah. Isabelle or Izzy, do you prefer Isabel or Izzy?
Isabelle: Izzy.
Sammy: Izzy. I love the name Isabelle, by the way.
Isabelle: Thank you. When I'm in trouble, I hear Isabelle, so it makes me.
Sammy: Kind of like I go by Sammy. My full name's Samantha, but same reason I'm like, don't call me Samantha unless I'm in trouble.
Isabelle: Yeah, I'm like, it really gets my attention, so if you want to get my attention, you can use it.
Sammy: What does accessibility mean to you?
Isabelle: I think for a while; I used to think accessibility was more of a physical thing. I never really thought about closed captions on TVs, TV shows, or the things that you don't really think about. And so, for a while, I was like, oh, accessibility is just like if someone can get through with a wheelchair or something like that. But I think definitely in the last six weeks, my perspective has changed a lot, given that I'm also in a wheelchair, even if it's temporary. But yeah, I think echoing what you were saying, it's hard to have to consider the environment outside of just going to a restaurant the last six weeks had to call and make sure there was space for me that there was a way that I could get in and with work too, I couldn't actually go to work because our building is not accessible. And I think before that had never crossed my mind, because most people I work with are able-bodied or they're able to do it. So yeah, I think I'm able to see the world differently now and understand that accessibility goes beyond just, like, oh, you can go through the door, it's fine. There are so many layers to it. But yeah, it's definitely eye-opening.
Sammy: No, for sure. It's one of those things that how you're saying that right now you're in a wheelchair, it's one of those things that makes you more aware of the hurdles that people that do need those accommodations have to go through on a day-to-day basis, like how you're saying for work. And even it's as simple as going to a restaurant to make sure they can accommodate you. It's one of those things that you don't think about until it happens to you, and that's another form of privilege. Prior to my diagnosis, I was very privileged not to have to think about that. And now that I think about, for example, the college I used to go to, if I were going to that college now, I don't think I'd be able to get to my dorm comfortably because it's an older campus, it's not accessible remotely. A lot of the buildings actually don't have elevators.
So, it's one of those things that now, in retrospect, I think of all of the times that I took advantage of the fact that I was able-bodied. I didn't have to think about this. So, it's cool to see that other people also have that perspective and have those experiences that allow us to appreciate the little things. I get really excited when I go places that are accommodating not just to me, but to other types of disabilities because a lot of the time I think we don't feel seen and we don't feel accommodated, and it does make us feel bad because then we're limited in what we are able to do or what we want to do.
Isabelle: Right.
Sammy: Exactly.
Mia: And it's crazy just being in your early, oh God, now mid to late twenties, not talking about that. Obviously, you want to go out with your friends, and it wasn't an issue. My freshman year of school, I was diagnosed after my freshman year of college, and so I went to the University of Washington. I loved it, but it's all hills and stairs. It's a rainy city. It's more a drizzly city and just a lot of gray skies, but there's not a lot of heavy rain, but it's still when the leaves are falling in the fall, it's a slip hazard. And then a lot of the sidewalks are older and they have these big, gorgeous trees on campus, which is lovely, but those trees have big roots that disrupt the pavement and the bricks and all that. And so, it's really difficult. So, when I was a freshman and going to frat parties and dancing on elevated surfaces before I was diagnosed with anything, I didn't think about, oh, the bathroom's up a flight of stairs, or, oh, if I'm going to Pikes Place market, I'm going to have to be able to walk up and down these big hills, no problem.
And I can walk uphill decently fine. It's almost like cows where they can go upstairs but not down, and then they have to get airlifted out of spaces. It's almost like that, where it's like, I can walk uphill pretty well, but if you ask me to walk downhill because I have no control over the actual joint part of Rodney, it's almost like walking in heels with bad knees. If you think about that, I can't put my weight on Rodney if my leg is bent. I just can't do that. Otherwise, there's a high chance that it'll give out. So, thinking about walking downhill is really unsafe for me now. And so, it's like places will have ramps and that's great, and I can do stairs, and I actually prefer to do the stairs because if I walked down a ramp, there's a higher chance that I could fall.
So, these are things I never thought I'd have to think about at my age. And even going out being like, Hey, are there a lot of steps that go into the venue without a handrail, or is there going to be a place for me to sit? Do I have to shell out 500 bucks for us to get a table at this club if we want to go out just because they won't have open seating at the bar? So it's all these things that we have to think about, and that's really frustrating, but at the same time, eye-opening and kind of seeing what we can do better in the world. And I feel like being on this podcast is one of the ways to be like, Hey, things need to change. You need to have seating for people who might need it, and it might not be the people who look like they need it that actually do. So you can't just write off people's ability level because they look a certain way or are a certain age. So I think that's really important.
Sammy: That's super true. Yeah. What does accessibility mean to you? Hearing all of this, what is coming to mind for you?
Inaaya: No, yeah, no, thank you so much. Relating to Mia, definitely. Yeah, I got diagnosed in sixth grade, so I was 5'2 and 11 years old, and I was kind of skinny, so as I put on weight after chemo, you could definitely tell there's a difference in the size of both of my thighs comparably. But yeah, no, it was definitely weird coming back after the pandemic. I was on crutches. I looked like I had a buzz cut with a mask. People did not know who I was, even though I went to elementary school with them for three to four years. Oh my gosh. Anyways. But yeah, no, definitely at school, especially in middle school and high school, teachers definitely don't think about, oh, what can I do for a student who's going to be on crutches for nine months or can't get into the small desk because she has to keep her leg straight. Still healing. There's so much you think about. And then I feel like, especially since I got diagnosed a lot younger, it's kind of implemented in my head now. I have to think about all that stuff. I highlight the hotel room when we walk in like, oh, I'll need to fix that. This can't stay here because I'll trip on it. My prosthetic needs some space. I'll move the table on this side instead, or I can't bend down over there. I will move the lamp on the other side.
But yeah, no, especially with the limb salvage. When I had it for three years, my doctor did well at Northwestern, I was able to put weight on it, but it took me a year plus of PT to actually relearn the walk. And then it took me a bit more with my prosthetic and yeah, no, especially after getting amputated, it's more of a noticeable disability. So having both of them, the limb salvage compared to the amputated limb, you can definitely see the difference. Especially at airports, I feel like I get more looks than comparably, and with being amputated and being young, so especially from, it's either older people like my grandma or older or my little cousin who's five, and personally, I'm more tolerant of younger kids. So if there's a kid looking and then says, Mommy, she has one leg, I'm not going to mind. But if it's some older lady who's just staring at me giving an up-and-down kind of thing, I'll be like, girl.
And then my mom will be like, do you have a problem? Do you have a problem? So yeah, no, I definitely think that more hidden disabilities should get that recognition. I feel like it might be a little bit harder on them too, to get that inner validation like, oh, that I do need this. It's fine if I speak up for myself. I had a huge problem with speaking up for myself when I was 12 after my limb salvage, and luckily, I was 12. I was with my mom all the time, so she would do it for me. But now, as I'm getting older and now I have definitely more visible disability, I have to speak up for myself. I go out a lot more alone without my mom now. So yeah, speaking out is definitely a key thing to help yourself.
Sammy: Yeah. The part where you're talking about the, even just thinking about accommodations prior to even arriving, you were saying a hotel room, you walk in and you think, I need to move this, that I don't trip, or this needs to be moved so I can make it to the bathroom and such. It's one of those things that we have to plan ahead for. We're always thinking one step ahead because we're thinking about the what-ifs to try to take care of ourselves. Then also, it's even harder when we go in public and things aren't as accessible, and how you were saying people stare and such. Another thing that causes people to stare and kind of judge is when you speak up about it, and sometimes people are hesitant to do that because then people see it as complaining, but it really is not complaining. These are accommodations that we need, and whether our disability is invisible or visible, we should feel empowered and comfortable to express those needs to people without having backlash or getting dirty looks.
And again, our age is a big factor in it. How you were saying you were young and you get a lot of looks, I'm young, and I get looks when we get out of the car, and it's a handicap spot, and it's kind of just like, you don't need that. And I'm actually, Mia was saying, I have a huge metal rod in my leg. I promise you, I do need to be closer to the store. And then also a lot of the accommodations that are for people with disabilities, able-bodied people benefit from them. How many times do you see people walking into stores using the little disabled button to open the doors? That's kind of something that when the argument is that making things accessible is more expensive, it's kind of just like, but we're not the only ones benefiting from it. Or how many times have we seen people using ramps when they don't need to, but they prefer it, and that's perfectly fine.
So I think Mia was saying with this podcast and just speaking up and advocating, and I was saying, and Izzy was saying, doing all of this, hopefully, it helps push things need to move forward in a progressive way so that we don't have to have all these feelings surrounding accessibility. Our next question, or the next thing we wanted to talk about is what's a common misconception about accessibility? For example, when people are like, oh, no, well, we can go here, but there's a ramp, there's more to it. Like Mia was saying, the weather, it can be slippery. There are a lot of misconceptions. Is there anything that comes to mind for you guys?
Isabelle: I think for me personally, there's been moments where my parents have been trying to adapt to this, and we were renting a ramp and we were using it on our front porch, and it was really, really steep. And I think in their minds it's like, oh, it's a ramp. It's fine. You can go down it. But the problem is I can't go up it. So there have been times where I was in one room and was left there by accident, obviously, but everybody leaves and I'm like, I'm stuck in here because I can't go up the ramp. It's too steep. So that was definitely something where I was like, whoa, okay, this is a new perspective. I keep saying it's a new perspective on how things are accessible.
Sammy: No, absolutely. I think there's a lot that goes into that. Now that you are in a wheelchair, it does make those things more apparent. What about you Inaaya? Is there anything that comes to mind when you talk about misconceptions surrounding accessibility?
Inaaya: I guess a huge misconception for me personally, and I guess for the amputated community who uses prosthetics, it might be that, I guess a lot of people assume that once you get your prosthetic limb, it'll be easy. It's like a limb. You just got amputated; walking should just be like that for you. You've been walking for, I've been walking for 16-ish, maybe 14-ish years, or maybe 15. I don't count the one year that I was after my limb salvage, but yeah, the majority of my life, I've been walking fine, but it's a whole new way of thinking about how to walk. I am thinking about the exact moment when my knee will bend so I can push off my other leg and hit it on the ground. I'm thinking, when can my other leg support me as I take my next step? How should I stop? Should my leg be behind me, in front of me, or on my side? It is like you're thinking way too much, and then that becomes a problem when you're thinking too much about it; you're going to misstep, or you're not going to take this step at all.
Yeah, no. And then I got super frustrated last year, not even five months after getting my prosthetic, maybe three months after I was starting school, and I was totally walking off and not correctly, and I kind of just gave up on it for two weeks, and I wouldn't wear it. I went back to my prosthetic clinic, and I spent a day there and I started walking fine. There's a totally new relationship between a person and their prosthetic limb. Your body and your mind have to actually accept that you need it or you just don't want it because there's some people who just choose not to use it, and they'll use crutches if they have amputated leg or a wheelchair or if it's an arm, they just might not, they'll just adapt to one. And these are all choices. But I definitely want to try to adapt to using the leg. So it's just become a consistent thing. You have to keep on mentally challenging yourself, like, okay, today I'll wear it for all of school. I'll take a rest when I come home, and then at 5:00 PM when I have to go to driver's ed, I'll put it on again.
And allowing yourself that, oh, I don't have to wear it 24/7. I can wear it when I do have to 100% use it, but I can give myself that break physically, mentally, like, oh, I can take it off here and chill out.
Sammy: So you're highlighting the misconception that getting the prosthetic, is the solution. And there's not very much beyond that, but you were highlighting that there's so much more that goes behind that and that there's more to it than just you get the leg and you learn how to walk in right away the end.
Sammy: And then that you always have to use it too. The thing I think people don't realize is that with external prosthetics, like, you were saying, you don't always wear them.
Now, being a part of the osteosarcoma community, and having so many wonderful friends who are amputees and do have external prosthetics, I've been educated thanks to them. I'm a lot more educated on the topic, and I do see. I don't know what I thought beforehand, but I would think they have their leg on 24/7, but it's like, no, it's different for everyone. And there's that misconception that the solution is, or it's the same for everyone or the path is the same for everyone, whereas even if it's the same surgery and the same process, it's totally different, and you can all compare experiences at all. So each person is always going to have their own experience.
Mia: It doesn't matter if it's a limb salvage, an external prosthesis, or a pelvic salvage for Izzy's case, everyone's going to have their own kind of way of adapting to it. And having so many, Sammy, as he said, wonderful friends who are amputees because of osteo or for other reasons. What people don't realize is that blisters are extremely common, and if you're going through chemo, that can be a huge infection risk. So that's something that my friend Jasmine has to worry about a lot. And she was just here yesterday, and she's a total boss. She's great on her crutches. She's great with her prosthetic. She totally has it, but it took her a good year and a half to get her prosthetic properly fitted to the width of her thigh and things like that. And it took her a very, very long time. And I know Kara's talked about that in the past before.
Kara's our Social Media Manager here at MIB and a very good friend of all of ours, and she's also very famous on TikTok. Oh yeah, she's famous on TikTok. Her TikToks are great. But yeah, it's just adapting and learning to walk again, and having to think about every single step is weird. You do get used to it after a while, and there are obvious pros and cons with both an internal prosthetic and an external prosthetic. But what I think is so crazy about the internal is a lot of people, especially since we're young, don't realize that these are parts that need to be replaced. So for Rodney, I was diagnosed with osteo in September of 2018, so that's over six and a half years now, almost seven, which is crazy to think about. And so Rodney was put in late October- sorry, no, late September of 2018.
My bad. I started chemo in October of 2018. That's why I get my dates next up. But they put Rodney in, and I had to learn how to walk again. And it was scary. And I know, Izzy, this is something that we bonded over, that when you had to stand for the first time after your surgeries, it was terrifying. Your heart rate goes up, your blood pressure goes up, because there's that anxiety, there's that fear. Your body has to adjust to something completely brand new, and then you get used to it over time. But what is really crazy to me is if I wasn't, I never expected to make it to six and a half years. And I'm not saying that I'll make it to 10 years, but if I do make it to 10 years, that means that I probably have to get Rodney replaced at some point and get Rodney 2.0.
So that's nice, and maybe by then the technology will be better, but at the same time, that's got to be another three-to-six-month recovery of me learning to walk again. And I feel like when you change external prosthetics too, it's a very similar process. Again, you can correct me if I'm wrong. I mean, it's just completely, I don't know. It's just a whole other ballgame. And I feel like people have these misconceptions of, oh, you're getting an amputation, while that's got to be great. The technology's going to advance so much, and they already have ones where you can feel your fingers or whatever, and you're like, I don't care about that. I'm just trying to get from point A to point B. At the end of the day, I'm just trying to walk from one room to the other and make my life as easy as possible. It's a mobility aid. Aid is in the term. So I just feel like it's a misconception that a lot of people have of, oh, it's so great that you got to keep your leg, or, oh, it's so great that you have the potential to use this technology in the future when it's like, okay, but it still sucks.
We still have to look at the world with a completely different set of eyes and just see everything as a trip hazard. I feel like I'm in some sort of Terminator movie. I'm scanning, scanning poor hazards. My mom is so sweet. And she'll usually be like, oh, make sure you watch your step here. And in my head, I'm like, I clocked at 20 feet back. I am trained to look for all of this. So I feel like that's my little tangent about that.
Sammy: No, everything you're saying is super true. I love that we're all sharing our different perspectives, and it seems like we all have the same understanding of it all, which is also beautiful how we have this little community of support and that we all understand each other and that I'm sitting here watching everyone as everyone talks. We're kind of just nodding our heads because I'm like, oh yeah, we're all feeling what Mia's saying right now. I think the next thing we kind of wanted to talk about was real-life accessibility fails and wins. Do you guys have any specific stories that stick out where it was a really, really great experience with accessibility or maybe the opposite that it was just a really, really bad experience with accessibility? I know that happens a lot when you travel and such, but Inaaya, do you want to start us off? Do you have anything surrounding that?
Inaaya: I have to think about a fail, but definitely a win. A ton of international airports are so sweet and kind to people that they know are coming into the airport with a wheelchair or going through airport security. Last winter break, my family and I went to Dubai and went into the United Arab Emirates country and their airport, they're so efficient with it going in a wheelchair, they get me from point A all the way to point B. The only con about that is the lady or the guy or whoever that was, took me so fast all the way to where our car was. My parents are still all the way over there, and my dad finds some cop, and it's like, this guy took my daughter. I have no idea where she is.
And I'm just sitting, and I'm like, where are they? I was just with them, and I'm just sitting here on my phone, and my brother comes running out, and he was like, we were all the way over there. How did you get here? And I'm sitting by myself. I was like, you guys, we have to go. We have to go check into our hotel. We need to pick up the pace over here. And just sitting in the wheelchair and he's like, you get to sit in a wheelchair, you're fine. My brother's so desensitized. So he's like, he doesn't even care. But yeah, no. And then when we went back through the airport to go to Istanbul, when we checked in airport security here, it takes forever, especially when you ding in at the security checkpoint. I would ding all the time with my limb salvage, and it would be so annoying.
I'd be like, all right, pat me down, I'm ready, let's go. And now with the prosthetic, they make me sit on the side. I wait five minutes while they do a whole drug test all over the leg, and then they do my shoes and the wheelchair and my back and whatever. And that took forever. But in the Emirates, they didn't do anything. They took me into a little room, and the lady, she just was like, oh, do you have anything on you? Nope, I don't. She went like this, and then I get out and we go, we just go to our terminal. And that was great. I have never gone through airport security so fast in the last five years.
Sammy: That's crazy. Yeah, it's really nice. I mean, it's difficult to have airports. How are you saying, I don’t know, Mia, do you set off the metal detectors and stuff all the time?
Mia: Yeah.
Sammy: Yeah, I'm like a metal detector hates to see us coming.
Mia: They do. They do. They do. I actually warned Izzy that the next time she travels she's going to, I don't know what the official legal name of it is, but it's not the walkthrough metal detector, it's the Swooshy one. I have no idea. It's the only way to describe it. But if they don't have that one, I know it's just going to be annoying.
I guess I would call this both a win and a fail. So, as Izzy knows, because we went to school together, it was basically a fact that pretty much every senior at our school would go to Coachella. So I went my senior year of high school, and it's almost like a rite of passage in LA when you're a teenager and all that jazz. And so when I went to the University of Washington, I was like, oh, I want to go again and I want to go with some of my sorority sisters who also love music as much as I do. So Coachella presale goes on in June the year before, and the concert, the festival isn't until the following April. So you don't know the lineup, you don't know anything, but if you know you want to go, you can get tickets in advance, and it's usually the best way to get them.
So of course, I book the non-refundable hotel. I booked the non-refundable flights from Seattle to LAX, and I was going to drive us out the whole nine, and I have all this done. And then in August, they find the tumor in my leg. And in September I'm diagnosed. This is 2018, going into 2019. I'll never forget my first meeting with my oncologist. Obviously, I'm in shock. I'm terrified. I don't even know what questions to start asking. And that's honestly where MIB would've been super helpful. I wish I had MIB from the very beginning because of our awesome handbook and things like that where it walks you through the questions to ask your oncologist or what it means for your tumor to be in the right proximal tibia. That means, oh, it's on the right side, it's closer to the middle of your body. So it's terms like that. And so I didn't ask. He's like, do you have any questions? And I didn't ask him. I told him this was the first thing I said after his spiel; I'm going to Coachella in April.
Mia: I did not ask my oncologist if I could go to Coachella. I told him that I was going to Coachella, and so he was just like, okay, we'll give you a break off chemo that week. He's super understanding about the whole thing. And Rodney was put in September and then it was April. And so I was just kind of like, oh man, what am I going to do here? And thankfully, my sorority sisters were like, we don't have to go. It's okay. I'm like, no, no, we're going. We're going. We're going to make this work even if I can't because it's my right leg. So it's like even if I can't be the one that drives because I have to keep my legs straighter, we'll still make it out there. Megan and Lindsay were amazing, and they took turns driving. We got out there and I had not walked more than half a mile since Rodney was put in.
And our first day at Coachella, my phone clocked us at 6.5 miles and my thighs were chafed so badly because what another misconception is about chemo, and I think undergoing chemo is a disability because it makes you immunocompromised and it causes a lot of fatigue a lot of the time and infection risk, things like that. So I'm fully bald at this time. I have no eyebrows; I have no eyelashes. It was that one short period where I didn't have any brows. Any lashes. And obviously I have very dark brows. It's a very defining thing on my face. And Lindsay would draw my brows on every morning, and it was a very sweet way to start the day. It was very wholesome. Sister hoodie, the three of us all in one bed going to Coachella and all of that. And they were super cool with me being like, Hey, I probably can't go until 4:30 or 5:00 when the sun has kind of set a little bit because I'm photosensitive from chemo. And so it was a win and a fail in the sense that it hurt like hell. My feet were killing me, my back was killing me because I was probably way out of alignment, and my thighs chafed so much. A lot of people don't realize with chemo that, especially with osteosarcoma and the power of the drugs that they give us, it's the MAP protocol is what they call it for those who are unfamiliar. And that's methotrexate. Adriamycin, which is also known as Doxorubicin, AKA, the red devil.
As well as cisplatin, which is a platinum agent chemotherapy. And those doxorubicin and cisplatin are considered the two most toxic chemotherapy drugs in the world. And they are two of the only three medications that have been approved for osteosarcoma. And so that's what they start us on, and they start us on this MAP protocol. And the toxicities on the cis plat are especially brutal. And I actually ended up losing 15% of my hearing after my first round of cisplatin. And I know Sammy, I know that that happened to you too. It's a very common side effect with it. And so it was that, and I gained weight. So all the steroids that they give us, I gained nine pounds from when I had started treatment to my heaviest during treatment. And I was like, this is a lot to get used to. And it happens so quickly because of all the water weight and everything is changing so quickly and you're not moving as much. And I feel like a big misconception about disability is when you see people going through chemo or people who have cancer in popular media, like The Fault in Our Stars, which I wrote a whole paper in college, or My Sister's Keeper, I don't know, whatever cancer movie you want to think about, they're frail, they're in a hospital bed, they're bald, they usually have a cute cap on. You know what I mean? That's what people think chemo looks like. That's what people think.
I'm like, no, I am bloated. I still have hair. So some hair, I'm sitting in the hospital, I'm doing crosswords, trying to figure out my time. And it's not that I don't want to eat, it's just that everything tastes terrible. So suddenly just eating regular unsweetened, not even Honey Nut Cheerios, just bland Cheerios and shredded chicken, rotisserie chicken breast. The only two things I ate for a few months, but I still was just gaining and gaining and gaining. So I don't know, I just feel like people have so many misconceptions about going through cancer treatment and having disabilities and all of the weight, physical and emotional that comes along with it. And I just think that people don't realize it. And so going to Coachella was a win in terms of being like, yay, I'm here. This is great. We got to see Billie Eilish.
It was Lizzo before she really hit it big. I mean, it was a really, really great lineup in 2019, and it was worth the thigh-chafing. It was worth the sore feet. It was worth every single second of it. But that also just shows how inaccessible the festival was. And you would think it would be that it's just this giant open, what's usually I guess a polo ground in the regular year. But I remember looking for shuttles and stuff like that, and it just wasn't as helpful. You had to be a true wheelchair-only user to get around and have someone who's used to pushing you. There were no people who would push for you, or there were very few areas that were accessibility zones only, so getting good views and things like that. So I just feel like people have said to me a lot, oh, festivals are so much more accessibility friendly than you think. And I'm like, I'm sure they are now, but I still remember Coachella 2019, and that was 2019 still. That was only six years ago, and I don't feel like it has changed much. And now, disability or accessibility is a buzzword that can get cut from research. So I think that there's going to be a lot more misconceptions spread in the next few years. But I think that we're working in a great way to raise awareness and all those wonderful things.
Sammy: I'm so happy to hear about how, despite everything that you just described, I'm so glad you went into depth about it because I think people really do need to understand what goes behind all of this. Because it wasn't just you going to Coachella, you were simultaneously battling cancer, and with that comes A, B, C, D, just the list goes on. So I like that you look at it kind of as a win despite everything that was going on, you were able to have that experience
And that makes me so happy for you. Honestly, whenever I hear about anyone having these really great experiences despite the cards that life deals us, it just makes me so happy that people are able to actually do those things because a lot of the times, it's not feasible for me. So I live in Southern California, I go to Disneyland pretty often, and shout out to my brother-in-law. He works there so he helps us get in. But when we go, certain rides have elevators that you don't know that they have elevators unless you ask. So I get to avoid the stairs completely and just do the elevators. And it's so funny, and I always think it's a win, specifically the Autopia and the one where you drive, there's a really janky little elevator, but the stairs are steep and the alternative is doing the stairs.
So I always do the elevator and I think it's a win when I'm able to go places and I'm still able to go on these certain rides and able to actually get to the loading dock without it having to be a problem. A fail I would say would be at the airport and stuff sometimes. I mean I've had some because I've been traveling a lot more recently, I've had some pretty weird experiences, especially surrounding people being a little more disrespectful, especially because when we do set off these metal detectors and such, it takes a minute for them to pat us down and sometimes they don't pull you aside, they do it and everyone has to wait and people get annoyed and you're kind of like, it's out of my control. But so airports as a whole are kind of hit or miss sometimes because like I was saying, sometimes they're super-efficient.
Sometimes you have to wait and sometimes you might miss your flight because they're not there to push you in the wheelchair and stuff. So it's very hit or miss. I actually, I have a friend named Carrigan, I think we all know and love Carrigan. She actually reached out to me. She was going to be on this episode, but she wasn't able to. But she reached out with a story about an airplane experience that she had, and she is an amputee and she is in a wheelchair and she wanted me to share with everyone. And she said that she had an epic fail on an airplane one time and that she was using a prosthetic leg at the time, and she went to the bathroom and due to the limited amount of space in the bathroom, she had to take her leg off to sit on the toilet, which is not ideal, I think I've never seen an accessible airplane bathroom, which sucks, but I don't know when that's going to change.
Hopefully, it does because disabled people need to pee too. But she said that when she went to put her leg back on, she couldn't get a proper suction on it, and she ended up hitting the call bell by accident. And when they asked if they needed anything, she told them to call her mom and she ended up having to hop back to her seat. Mind you, the plane is going, it's moving and everything. She had to hop back to her seat and by the time she got there, it was a lot emotionally and stuff. She said that she was in a panic. She was out of breath. And since that experience, she has not been on an airplane ever since because it's kind of just one bad experience that can traumatize you and kind of ruin that whole thing for you. But she kind of just wanted to share the airplane bathrooms that need to be more accessible. And definitely the whole situation could have been avoided if she had more room. And I think this kind of concept is applicable to a lot of things, not just an airplane, but just in regular life. If things were already accessible, if they had already had people with disabilities in mind, then maybe these problems wouldn't arise and people wouldn't have to go through these traumatic experiences.
Mia: Another thing that I think is really important, just on the subject of flying and transportation and just being in public with a disability, what people don't realize is that there are associated costs that are unexpected almost. Even though I love sitting in window seats on planes, I need to sit in an aisle seat now because if I can't extend Rodney and the plane rides longer than two hours, he's going to cramp up and it just gets stiff. And if it's straight for too long, he gets upset. If I'm on a bar stool and he's dangling for too long, he gets upset. He's just a very cranky guy. And so having this cranky entity in my body is very frustrating, especially since I am someone who's lucky enough to get to travel a lot. And I just want to name-drop some airports that actually have been great.
Most of them are of course international airports, not airports in the US. I feel like LAX has upped their game lately, which I really appreciate. But I'll never forget, when I went to Reykjavik, which is in Iceland, it's the capital of Iceland. They had one of the most beautiful airports I've ever seen and the most accessible airports I've ever been in. And we got to cut the customs line, which was an hour long. It was awesome. So it was like a total win-win, win, win, win. But then when we changed planes in Boston on the way back, I will never forget, I brought my own travel wheelchair because we didn't know we were going to rent a wheelchair in Reykjavik. We were going on a cruise ship. We weren't sure if they were going to allow us to bring it on the cruise ship. We didn't know really what the plan was, but we did want something just in case. So we decided to get me a nice travel wheelchair and they were expensive. So we were at the Boston Airport and we checked my travel wheelchair. They had one at the airport for me, and at oversized baggage, they just trucked it out off the belt and onto the ground, and it broke. And this was a $250, $300 wheelchair. And it's like, okay, at least the trip was over. But at the same time, it's like, what if I wanted to use this for our next trip whenever we go on one?
So it's just kind of really frustrating that people's mobility aids aren't always taken seriously and treated with proper care. And I feel like that is definitely a real-life accessibility fail just like, oh, I have this amazing experience in Iceland where everyone was so accommodating and such a beautiful country. It's truly one of the best trips of my life. And then it just ends with some jackass in Boston. So I mean, it's just kind of like, well, okay, there goes $250, $300 and if you complain about it, they're like, well, bags get damaged all the time. And we didn't know it was a wheelchair; it was in a bag. And I was like, there's a tag.
Sammy: Yeah, it's different. I feel like that's not a valid argument. Like, oh, we didn't know it was a wheelchair. I feel like regardless; our stuff should be treated nicely. And especially with a mobility aid that sucks how you were saying they don't know if you were going to use it right after, they don't know if you were waiting to get that to use it. They just screwed you over. And thankfully that wasn't the case. But still, it kind of sucks because then again, you're going to travel again. You might have needed it in the future. And now that's not an option. And it is expensive because a lot of the time, insurance doesn't cover the things that we need, mobility aids and stuff, it really does suck. But sometimes even just to get a simple walker, one of those little gray ones you get from the hospital, they're not free guys.
And I wish that our mobility aids were treated with care and kindness and then a step further, I wish the people that need them, those of us who are disabled, are also treated with that same respect and kindness. And I think recently it's kind of disheartening to see that it's not like that and that there's a lot of negativity and just downright mean people that discount our experiences and what we need and what we don't need and stuff. And I think there's a lot of improvement that needs to happen in the world, but it's again, little things like this us sharing our experiences that hopefully reach an audience where it's people who feel compelled to make a change and help us improve just accessibility as a whole, because this is something that's not going to go away. Years and years are going to come and yes, technology will get better, but disabled people will never stop being around. There will always be disabled people, whether it's invisible disabilities or visible disabilities, we deserve accommodations and it'd be really nice if the world was more accessible to us so that we wouldn't have to worry about all this stuff. Yeah.
Mia: And I know we touched on the emotional side a little bit already, but Izzy, I know that everything that you've been through recently, how has it impacted you emotionally? Have you felt frustrated or left out? Has the FOMO kind of set in yet?
Isabelle: Yeah, I mean definitely. And I am so thankful to have Mia in my life because she was there with me through every emotion, even if it was at 2:00 AM, she was always there to answer me. But yeah, I think for the first few weeks it was definitely tough because I like to be very independent and so asking for help was a really big thing for me. And even for little stuff like brushing my teeth, I had to ask for help. And the doorways in our house are very small, so I couldn't get my wheelchair through it, so I couldn't use the bathroom on my own. So all that basic independent stuff I wasn't able to do was really weighing on me because just having to ask my parents for help and they're tired, they're stressed, they're worried about me, and then on top of all that, they have to help me do stuff that, I mean at 25, it's kind of awkward to ask my mom, Hey, I have to pee, can you help me?
Or I can't wash my hair, things like that. So that was definitely really hard in the beginning, but we finally found a groove and I can kind of navigate independently on my own now. But I think socially too, it was great. The first few weeks everyone was reaching out and I had a couple of people over a few times, but I was also really tired. So people were checking in a lot. And then kind of as time goes on, people they don't forget, but I think life goes on for them, which is great. And I want people to keep doing it, life doesn't revolve around me, but this is still very much something that's impacting me and will continue to impact me. So it kind of gets hard when the people who were so involved in the beginning stop checking in as much or I think they forget that I can leave the house.
I am not bedbound. I think that's kind of starting to set in now that I have to reach out to people again and be like, Hey, I'm still here. I still want to do stuff, but luckily the crutches too, hopefully, that will be able to get me out more. That was the big thing stopping me was kind of the wheelchair was heavy, it's bulky, it's hard to navigate. So I sort of became a hermit myself. But I mean there's a lot of emotions through it all, and I think the overarching thing is just being grateful that I have help.
Sammy: Yeah, no, absolutely. It's difficult because I think we are also very hard on ourselves, how you were saying it sucks to lose that independence and you're hard on yourself, especially because you want to be able to do things on your own and not have to ask for that help. And it makes it even worse for the world around you. Doesn't consider how you were saying that people kind of fall off, I think all of us who have gone through cancer and just how you were saying that you're going through right now something with your health, it's difficult because people seem to really care at first, and then it's like they stop caring and maybe that's not how they want you to feel, but it is really tough because we're already in our heads and when the outside world gives us more to worry about and whether they mean to or not, it is really tough. So I think we all felt that what you were saying right now, we all resonated with it. So thank you for sharing with us.
Isabelle: Yeah.
Sammy: What about you, Inaaya? Is there, what has the emotional side of the inaccessibility of the world or your experiences, how has that been for you?
Inaaya: I definitely do relate to Isabelle when you talk about FOMO on that level. I mean, I finished chemo right before I went into seventh grade, and that was kind of a sigh of relief. I was like, okay, this is ideal, but at least it's before high school. Oh my gosh. And then I got diagnosed my freshman year of high school, so I had maybe two or three months of being a normal high schooler with my limb salvage. I could do enough with my limb salvage. My restriction was just no competitive sports on the field. I wasn't on a swim team yet. But yeah, no, I was still swimming, and swimming was the best thing ever when I had my limb salvage. And then I got diagnosed in November, and then I was like, okay, let's do it again. everyone my age is online, TikTok, Snapchat, Instagram, whatever.
I'm happy that they're going through, oh, we're just in high school. We figuring it out. And then I was kind of at home doing chemo, doing school online. And that was kind of rough for me too because I was like, well, everyone else my age is kind of doing this and I'm kind of stuck here. I felt like I was 11 years old again. That was crazy. Yeah, yeah, no, I could have gone out, but it was just that kind of moment where it was super awkward. I didn't want to go out and be that one kid who's at home and it's kind of awkward. Yeah, yeah, definitely.
Sammy: Because on top of it being accessible, you also need to think if it's feasible for you. You were actively going through treatment and stuff, and maybe you could have gone out and done what these other kids your age were doing, but was it safe? No. So that kind of knocks out accessible maybe, but feasible, definitely not. So there's a lot more that goes into it.
Inaaya: Exactly. Even if I could have gone out and I did think about it, it just wasn't safe at the moment. And if I did have people over and it was my mom, she was like, oh yeah, just tell them they have to wear a mask. Even just telling them they had to wear a mask when they're in my bedroom. I was like, so I don't want to have to have my friends in my room when we're watching crap rom-coms and eating pizza, tell them to wear a mask while we're doing this stuff. It was just annoying. And then when I came back, I was first using my prosthetic, I had my friends carry my backpack and when I first had to ask them because my mom put it into my 504 plan at school, it was super awkward for me. I didn't want to have to make them do that. But then at some point, my friends, maybe a couple of weeks said they were the ones who were telling me to get out of class 10 minutes early so we could just roam around. And thankfully I have really good friends at high school, so they used the get out of five minutes early so they. can carry my backpack in the hallways as a perk for them too, so we can just get out of the lecture in history and roam around for five minutes and then go to our next class.
Mia: Yeah, I am not going to lie, I still tell my friends on the regular, I have the cancer card, use it as much as you want. If you are running behind on an assignment at work or at school or whatever, you can just be like, I'm so sorry, my really good friend has cancer and she had a procedure this week. It really is a useful card, but obviously only with permission should you use it. And I feel like that was a case of using it with permission.
Sammy: It's really nice though how you were saying that you have those friends that also they're helping with your backpack and stuff. I think we talk about this a lot on other episodes. It means a lot to have those friendships where it's an unconditional type of support that they do these things for you. You didn't even have to ask them; they just knew that it would help you. So they do these things for you so that maybe if the world around you isn't accessible, they do their best to make it a little bit easier for you to be able to go out and do these things. So I think it's really important to have that support system. And it's really cool to hear that right now you're in high school and you do have those people in your corner who make sure that they make your life a little bit easier because life is already really hard as a disabled young adult.
Sammy: Think the last thing we want to wrap up and we want to ask everyone how non-disabled people can be better allies, like what to do, and what not to do. Do you have any advice for people listening? How can other people that love us and are around us, how can they help us with this constant struggle with accessibility?
Mia: I can start just because I know I'm a rambler. I feel like I've gotten really lucky with so many wonderful friends who are very understanding of what I'm going through and we'll make sure that Izzy, who's one of my closest friends, made sure that when she was having a birthday party at a bar that we had a table. And so she reserved that ahead of time. And it's the small things like that where it's like you don't want to be like, Hey, do you mind changing your entire birthday celebration for me? And you have those people who are just like, oh, I know that this might be a lot easier and make the event seamless for everybody. I feel like that is a huge game-changer. So just taking into account anyone that you have on your guest list or things like that, if you're not disabled, that is kind of the best way to help us out, almost doing it without having to ask.
We feel seen, we feel heard, we feel understood, we feel appreciated, and we feel wanted at that event or at that person's house or what have you. And I feel like the biggest thing not to do, we just want normalcy. We want to be understood and we want to be heard and to be accommodated, but at the same time, we don't want people being like, oh, you're walking on two feet. Do you need help? Or it's like, I promise I can do it and I will ask for help when I need it. But it's just crazy sometimes when people are like, there was this woman, my mom and I like to go to the spa retreat. We're actually going at the end of the month and it's not the most accessible place by foot, but it's pretty good. And I just remember there's this labyrinth ceremony that we do and it's kind of like a tight path and you kind of walk through and it's like silent reflection kind of thing.
You write on a piece of rice paper, something that you want to let go of. There's a bowl in the middle of the water, and then so you drop the rice paper in the water and it dissolves and it's like a hole. It's very, very sweet. I've done it a few times now, so I know the path. This wasn't my first rodeo and this woman who had befriended us this week, and was so kind and I knew it was coming from a good place. She'd seen me walk and be in the dance classes and things like that there. So I don't understand what was really going through her head. Maybe it was that it was the last night of the week and that's the only night they really give us alcohol. So maybe it was that, but she is not my mom and my mom was with me.
This woman latches onto my arm to walk me through the labyrinth and no, that's really sweet. That is really, really sweet. But she was a little tipsy and I thought that it was almost like the blind leading the blind here. But I just remember her, the grip she had on my arm was just so intense and it was just kind of this really sweet, but also really awkward moment and my mom and I just kind of made eye contact and just shrugged. And so I feel like that is kind of like a what not to do, especially if you've seen someone be able to handle stuff. And I just feel like looking around a space and if you're there and you have your crutches, someone being like, oh, have my seat. That is an easy, nice way because it's awkward feeling like you have to ask sometimes. And obviously it's so important. It's crucial to advocate for yourself. There's a point where it gets just absolutely exhausting.
Sammy: Yeah, it's nice when people make accessibility a habit and not an afterthought. Instead of only thinking about accessibility when a disabled person is present, you should really try to integrate it into everything that you do because then it also makes those who are around you care about those who do have a disability of some sort. It makes them feel seen, loved and heard. It's listening. And then it's also how you were saying certain things you do want help with and certain things don't. A big thing is listening. I know sometimes people have good intentions and want to help us, but you also need to think we have our boundaries too, and there are some things that we do want to try to do on our own. So kind of just listening to your friends who are disabled and kind of also amplifying disabled voices because a lot of the times when we try to speak up about stuff that's unfair for us or stuff that we think needs to be changed and stuff, it's taken us complaining kind of how we started this podcast. We talked about how being an advocate for yourself, sometimes people just see it as you complaining when a lot of the times, well, it's never complaining, it's basic necessities. But if you're in discussions about accessibility, keep your disabled friends in mind and try to amplify their voices. And the best way to educate yourself is to listen to those around you. So I feel like that's a really, really big thing. Isabelle, do you have anything, any advice for people on how to be a better ally?
Isabelle: Yeah,I think ask questions instead of making assumptions. That's definitely something I've had conversations with my family about. I think a lot of the time my mom especially assumes that I would want full independence. Then there have been a couple of times where I'm like, okay, I need help. And she was like, oh, sorry, I thought you just wanted to do it on your own. And it's like, I would like to do it on my own. I just can't do it on my own. So I think I know there's a difference between asking, it's just knowing to ask the right questions, knowing what the right questions are, and being a helping hand without feeling like that's your role. My friends aren't my caretakers. They don't have to do that, but just step in when to step in. You know what I mean?
Sammy: Yeah. I love being asked when people ask me what my levels of comfortability are, what I need help with, and stuff. It helps me feel heard. And then also sometimes you're going to ask and people are going to have different reactions and stuff, but it's all like a learning curve. If you mess up, listen, apologize, and just do better next time because growth is part of being a good ally and any sense of that word. What matters is your willingness to learn and improve, and that will only happen if you take the necessary steps. So it's okay to, you're going to mess up sometimes it's not going to be perfect. Maybe you'll upset someone and stuff, but it's just like you learn and you move forth like that so you can make the world around you a better place for those people who have those added struggles that maybe you don't have to experience because you have the privilege of being fully able-bodied. You're not having to think about the accessibility part of any part of your life. Right. What about you, Inaaya? Do you have any advice for people on how to be a better ally?
Inaaya: I mean, just kind of going off Mia, just having that awareness with your friends ahead of time too. I've had friends text me before we hang out at someone's house, oh, by the way, it's going to be in the basement. Or by the way, we're going to hang out in the loft that's upstairs. Do you need anything for that or would you rather us just hang out in the living room because that's fine too, or whatever. And yeah, no, I can go upstairs, prosthetic and on my crutches. It kind of just depends on what we're doing or how I'm feeling that day. I remember at my friend's birthday party, we were hanging out in her loft upstairs and we went down to get food and we stayed down for food and we went back upstairs and we were eating chips and whatever else, like junk we were eating.
But yeah, no, when I was going up the stairs, my friend who knows that when I'm using the stairs, I usually have my crutch. I have a forearm crutch, so my crutch is here, and then I would have my hand on the rail so I could just literally just zoom up the stairs in under a minute. She's like, oh, do you want me to grab your crutch? And I'm like, yeah, sure. So I hand her my crutch, she goes up and I take a couple seconds to go up and then she gets it back and then we got chill. Just those little things, she knows I rather use one or something like that. It just makes you feel like her, like, oh, thank you so much, you're so sweet, blah, blah, blah. Or when we went down, my other friend was like, oh, let me take your crutch. Thanks. We go down, we eat, we come back up, whatever it is. Just those little things, I guess. Definitely that warms you up.
Sammy: I was going to say that in itself is beautiful. People letting you know ahead of time what the situation's going to look like. I know a lot of times when I go to venues, whether it be a concert or let's say going to a restaurant and stuff, you look up what it's going to look like and sometimes when you're hanging out with people and they're like, oh, we're going to do this activity, by the way, this is what it's going to look like. It really does take a lot of the stress off of those of us who are disabled because what I hate is showing up somewhere and then standing there and being like, I don't know how I'm going to get down this flight of stairs. I don't know how I'm going to do this. Whereas if you kind of go into it more prepared, someone kind of told you, you don't have that anxiety in the moment because you don't know what to do.
So that's really beautiful that you have friends that accommodate you because I'm pretty sure it gives you peace of mind too, knowing that you're going to go and maybe there are going to be stares, but also, they're going to be there to help you. It's not something you have to worry about. So that's one thing that's taken off your plate. Again, thank you both for joining us. It's so nice to have, we love having new faces on the podcast too, new perspectives, and again, we commend you guys for your vulnerability. I hope that you sharing your stories and experiences and your thoughts and emotions, you're reaching an audience that really, really needs it. I remember when I was actively in treatment, I would look for places like this, that kind of an environment that feels very supportive and understanding, and just commend both of you guys for taking the time out of your day and coming and joining us. And it was really fun getting to know you guys a little bit more too. And yeah, it's really nice. I'll pass it over to Mia so you can kind of get us into our closing messages.
Mia: Of course. Thank you. Just echoing. Sammy, thank you so much for being here. It means the world to us. We are so happy to have you on. And like Sammy said, new perspectives are always ultra valuable just in the podcast world. Izzy, as you know, in general, it's just when you hear different perspectives, it's just really, really helpful. So thank you again to both of you for joining us, Sammy, for being a wonderful co-host as always. And thank you again to the Moore family for their generous support of our osTEAo podcast and for creating a space for young adults like us experiencing cancer or disability to share, relate, and heal together.
Mia: Thank you all so much for tuning into osTEAo the Osteosarcoma podcast. Be sure to follow MIB Agents on social media at the links in the description for all of the intel and all of our Hot Goss. Thank you to Izzy and Inaaya for being here today and joining us. We will see you next episode and we're your hosts, Mia and Sammy. And that's the tea!
