Embrace It with Lainie & Estela - Smashing Disability Stigmas
Embrace It with Lainie & Estela - Smashing Disability Stigmas
Embrace It: Episode 55 - 10 Things We'd Tell Our Younger Selves About Disability
In this heartfelt episode, join Lainie and Estela as they open up about their personal journeys in living with a disability. Delving into the depths of self-reflection, the duo shares an intimate list of insights they wish they could tell their younger selves. From navigating challenges to embracing self-love, this candid conversation unveils valuable lessons, offering a beacon of wisdom for anyone on a similar path. Tune in for a touching exploration of resilience, growth, and the empowering messages that transcend time.
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Welcome to the Embrace it series, where women with all types of disabilities can be real, resourceful and stylish. With each episode, you'll walk or roll away with everyday tips, life hacks and success stories from community leaders and influencers. So take off your leg braces and stay a while with Lainey and Estella.
Speaker 3:Hi, I'm Lainey and I have CMT. I'm a neuro-muscular disorder affecting approximately 2.6 million people worldwide.
Speaker 2:That's as many as MS. We believe disabilities should never get in the way of looking or feeling good. Both of us wear leg braces and have learned through our own personal journeys to embrace it Brought to you by Launchpad 516 Studios.
Speaker 3:each episode is designed to challenge your own stigmas and beliefs around disability. We want our listeners to get the most value for their time spent with us, so we interview some of the most empowering disability badasses in the world. Through storytelling, personal experiences and tips, we're all reminded of our own strengths and endless potential.
Speaker 2:For more information and exclusive resources. Check out our websites at trend-ablecom and hnf-curorg, and don't forget to hit the subscribe button for future episodes and special promos. Hi everyone, it's Lainey. Welcome to another episode of Embrace it. Hi Estella.
Speaker 3:Hey Lainey, Happy New Year.
Speaker 2:Happy New Year. We're not sure when you guys will be listening to this, but this is the first time I'm seeing Estella in 2024. Yes, you look the same. You look the same.
Speaker 3:Well, thank you, I appreciate that.
Speaker 2:You don't look any older.
Speaker 3:I feel older. It's been a hectic few weeks, but I'm very excited to see you again. As much as I love the holidays, it's definitely a relief to have everything out of the way now, and now we can get back to our regularly scheduled program and look forward to all the exciting things we have going on for 2024.
Speaker 2:Absolutely. With that said, you guys, we have a special episode today. We do not have a guest. We thought it would be great for Estella and I to talk about a subject that is something that came up in a conversation actually before we left for the holidays which is what things would we tell our younger selves if we could, about disability? We thought it was just a really cool subject and it gives food for thought. I compiled my list, Estella compiled her list. We came up with 10 things that we would tell our younger selves about disability. We want to know from you guys if you relate, if you don't relate, what you would add, what you wouldn't add. But let's just get to it and go through some of our things we would tell our younger self.
Speaker 3:Let's go Okay, Estella you do it.
Speaker 3:I'm starting. Okay, dear younger Estella, I would tell my younger self the first thing would be that my disability is going to provide so many more gifts than things that it's going to take away from me or experiences. This, of course, is, I think, hard for people to understand when they're in the midst of it, or maybe when they're newly diagnosed, I think, especially when you're younger and there's so many unknowns and you're wondering how your future is going to unfold. For me, this is definitely a hindsight. I think we definitely included this in our episode about the 10 gifts of disability For me. It's given me so many experiences, career opportunities, has brought so many wonderful people into my life, including you, lady, because of this disability. I think that would be one big thing. I would tell my younger self.
Speaker 2:I like that a lot. You think you're right. I think when you're young or even not so much young, maybe it's like when you're first diagnosed, or maybe you were in an accident or developed some sort of diagnosed autoimmune condition, whatever it is, telling someone that, by the way, if you embrace it, you will find that there's a lot of gifts that your disability will bring. Obviously, we don't want to necessarily tell someone that, because you want to hear them. Also, if someone had said that to me, I probably would have kicked their ass. I'm not happy, I would definitely not have been validating, but I do get that and feel that in a lot of ways myself. Okay, number two if I could go back and tell my younger self something about disability, it would be that, lainey, don't use your disability as an excuse to avoid things that are hard and that you don't like, like hiking trips and gym class and climbing up little hills. Don't avoid them, because if you can do them, you should do them. You shouldn't necessarily.
Speaker 2:I think I was so caught up in being perfect and not wanting to do things unless I could do them well, so I didn't do them at all. As a person who is now 53 years old, I finally realized that like that is not growing. You know, if you don't try things that are, you know, cliche as it sounds out of your comfort box and you're stopped and you never grow and a lot of things. I used my disability as an excuse and you know my mom did the best she could, but you guys have all heard this in an earlier episode that like she didn't, she got me a Doctor's note to get out of gym class because with Sharcoe Marie-tooth disease I was definitely picked last for teams. I wasn't coordinated. That didn't mean at the time I couldn't do those things. I could play catch, I could play dodgeball, I could do them.
Speaker 2:I just wasn't good and I was embarrassed and I would tell my younger self, like get over yourself, like you're not gonna be good at everything. But if you don't put it out there then you don't know if it's something you can do or not. And you know, the best, best example of this as an adult is that I think a couple years ago I started riding a bike like a bike, a real bike, not a bike with training wheels, but like an actual bike, and so I used Sharcoe Marie-tooth to say I couldn't ride a bike for all those years. Right, I found out I, I can, I actually and and love it. And an electric bike is like the best thing since slice bread, because you don't have to pedal if you don't want to, and like it really right. So that's what I would do. I.
Speaker 3:Love that. Yeah, I definitely agree with that one. I think for me there were some things that I probably could have tried that you know I just assumed that I couldn't do, and so you don't know unless you try it. And I think it's usually the fear of looking less than or awkward or clumsy that keeps us from trying those things. So the sooner we can address that, I think, the sooner we can take those risks. Okay, number three for me.
Speaker 3:I would tell younger Stella that she's going to be able to create a career with her creative skills and and her experience with disability. I think for so long I Put those things in two separate categories that I thought that I wanted to pursue a, wanted to pursue a career, but that my disability would always be Something that I would have to overcome or something that was gonna hold me back in my career. And it wasn't until a few years ago that I finally was in a place where I could confidently say no, I've been able to combine both those things to have even a more fulfilling career. So I think that would be my advice to anybody younger or who is struggling with finding out what they want to do with their career or transitioning from different type of work or or just starting something completely new, that your experience with disability is valuable and something that you can build into a career and Monetize off of and make something really truly unique out of.
Speaker 2:Yeah, and I love that. I mean, obviously, you know, and many people listening know, that I started trendable Based on like just exactly what you just said. I combined. I never occurred to me that, you know, having a social work degree, loving fashion, being someone who's you know like can find things this is before the internet, right? Like you, who was able to be resourceful, that those things combined With my disability and having shark marriage, who could really be something that I could do as a job and love it? And I started trendable by combining just the skills I had and and took fashion and applied it to. You know, the hacks that I use every day to be able to get dressed or put on makeup and yeah.
Speaker 2:So if you're listening and thinking I don't know what I want to do with my life, think about the strengths you might have from your disability and like what you like doing. Right, it shouldn't be like, oh, I'm just gonna go get a career like you the Stella decided to work for in organization that you know helps people with hereditary neuropathy right, that's. You made that a job. People who are listening, if it's not about work and it's just volunteering, maybe. Or, you know, getting involved in like something where people you know that, you know you've been through it, been there, done that that you can offer as a mentor to someone else. So okay. So my next one we're on number. What number are we on? We're on number four.
Speaker 2:Okay, my next one would be that I definitely Would have started working out Specifically doing Pilates, much, much earlier in life. That kind of goes along with the one I just had said before about using my disability as an excuse, because that was an excuse I used for not exercising. Oh, there's nothing I can do in a gym. Like I can't do cardio, like I can't jump, I can't run, I can't whatever, I can't do Zumba Well, like I can't go to a gym. And I found out at like 30 years old that was the first time I worked out that in fact there are a lot of things. If I can get over myself meaning not think of myself as like, oh, everyone's staring at you, which is usually not what's happening If I can get over myself and just try, like, the benefits of exercise, and group exercise specifically, are amazing. Yes, you can certainly use your iPad or whatever and Google some Pilates videos, but there's nothing as empowering as being in a room with other people. It's motivating, it keeps you on track and you know I am probably the only one with a physical disability in most of the classes I have and I've taught them a lot about what works and what doesn't work.
Speaker 2:With making, what is it called when you change Adaptions? Yes, making adaptions and stuff. And you know I would have started it much earlier because I believe my whole heart that is what is helping me to stay strong. I mean, I have a slowly progressive neuromuscular disease, right, and I don't think my feet and my legs and my like challenges with balance and walking, honest to God, I don't think that they've changed since I've started exercising. I think my hands, my fingers have gotten worse. I don't really exercise those other than I guess my husband says I use my hands a lot when I talk, but that's not the same, right. I mean, pilates has really helped to develop my core so that I can use that as a substitute when the muscles that are weak aren't working, so I may be able to use it to accommodate. Yeah, that would be my number.
Speaker 3:Yeah, no, I love that, and I think, especially for CMT and, I'm sure, for other conditions, we're told so many times that there's nothing that can be done and, unfortunately, whether that's healthcare professionals or anyone well, there's no cure. So there's nothing you can do. Just go home and I'll see you next year with really, we really do need to be our best advocates, and exercise not only is still beneficial physically, but mentally. There's so many benefits to just keeping a clear mindset and decreasing your risk for depression and all of these other neurological conditions. So I love that. Keep moving.
Speaker 3:Number five for me would be I think this is more so high school than anything else. But don't worry so much about fitting in. I think, of course, it's normal. All teenagers, for the most part, they want to feel like they fit in. There's the clicks and I think we have a disability.
Speaker 3:For me at least, it was hard to really integrate into one of those social groups in school because I wasn't athletic, I wasn't on the dance team, I wasn't on the band.
Speaker 3:In the band, you know, I grabbed it to you towards the art and theater, but I really wasn't great at those either.
Speaker 3:So I didn't really know who my people were. I had friends here and there in different groups and who were part of these, I guess, teams and sport teams. But it was hard. It was hard just not being like embraced into one of those groups and always having you or people in your group of friends that you knew you were always included with. So I would definitely tell my younger self that that's okay and you're definitely going to eventually find the people that you do fit in with. And fitting in is not all it's practiced up to be either, and I learned a lot of things by having no choice but to be left to myself sometimes and sitting on the outs on the sidelines of activities, and I think that gave me more of a work, that muscle, more of being an observer and picking up on things that not necessarily everybody was picking up on, or giving me opportunities to be more creative and think outside the box. So, yeah, don't worry so much about fitting in, and I think that it does apply, though, to adults.
Speaker 2:So a lot of adults are very, very you know, yes, I was the same way. I had a very challenging childhood and adolescence and I gave my mom absolute hell with insecurity and wanting just to blend in and fit in and not really understanding that my disability doesn't have to be a hindrance, and I worked so hard to try to keep it, you know, under wraps, so that no one knew.
Speaker 2:And all that time trying to fit in, you know I really could have like done what teenagers are doing today, which is they're taking what could be, you know, back when we were young well, I'm older than you- Estella but like taking things like today, like being different is so much cooler, like being different and putting it out there that you don't necessarily agree or want to fit in or be exactly like your friends and wearing the same clothes or whatever, you know it's very much accepted, like today, and I wish it was like that for us, but it wasn't and, you know, can't go back. But for those adults who still are trying to fit in you know which? There's many. I have many friends without disabilities that are still trying to just fit in and find their place. You know what? How about you have people find you like. If you're strong and you are confident and you are like this is who I am, take it or like or hate it, like, love me or not, you know you'll find that your tribe finds you too, you know, like those people.
Speaker 3:So it's the whole mentality of attract and not chase, right yeah yeah, exactly, let him.
Speaker 2:Let him call or her. All right, my next one would number six would be I would have asked my mom more questions about her CMT, her disability, her Charcomery tooth disease. My mom passed away it's now been six years, if you can believe it, goodness kind of when I started doing all this. Right, but my mom didn't talk about it. She didn't talk about it For my mom I don't think it was shame, I think it was more just. She just didn't let her disability stop her, so she didn't talk about it. She didn't talk about it with me and I inherited it. We never said oh, like how do you feel? I never asked my mom like, how do you feel about having this? What you know? What did you feel like growing up, mom? Like I would have asked those questions if I could go back to my younger self.
Speaker 3:Yeah, I think that's important, especially with conditions that are genetic and within the family. So many family members and generations have CMT and other conditions that sometimes we don't take those opportunities to really lean on each other and support each other and have those deep conversations and connect and be vulnerable and understand that we're not alone in it at the end of the day, right.
Speaker 2:Right, exactly, absolutely.
Speaker 3:Okay, number seven, I think this kind of falls in line with your exercise one, but I would have started meditation and yoga sooner. Again, very, very similar to you. Well, meditation not so much. It wasn't as big back in the day as it is now, but yoga wasn't even on my radar and again, it was one of those things that I assumed I couldn't do or it wouldn't be beneficial to me. But I did start in around the age of 30 as well, and I found it to be really helpful mentally, emotionally, spiritually, physically, and I did find, like you did, those ways to adapt in class and connect and really start to reflect on accepting my body and literally looking in the mirror in class every day and stop comparing myself to everybody else in the class and how I thought my body should look. So yoga was definitely a big turning point for me and I wish I started that earlier. But it's never too late and I'm glad I did. We'll be right back.
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Speaker 2:Okay, I love that. And you know it is the same but different, right, like the exercise and physical exercise of doing the Pilates and aerobic exercises you know is not only good for your body and your strength but also for your mind, where you know. And meditation and yoga, I mean I've said forever like I don't think I can meditate. I don't think I can meditate, but anybody can, even someone like myself who's like go, go, go, go, go go, and isn't so chill, like Estella, like meditation can be just walking and or, or rolling and noticing and paying attention to one color as you're walking, like I don't know if you taught me that, estella, or someone else, but like that's like meditation for dummies kind of thing, where you're just, you know, focusing and when your mind tries starts to go, you know, oh, what am I going to make for dinner? And my kids are failing geometry, whatever. You go back to the color or whatever.
Speaker 2:So, yeah, a few tools along the way to for that. And just breathing too, I mean, like we didn't say that, but breathing is something. Would learn how to do that earlier. You know for sure I never learned like breathing is so helpful, like practice breathing, I know you know, yeah, especially for the nervous system.
Speaker 3:you know CMT is a disease of the nervous system, so it really calms, helps calm, calm our mind and bodies.
Speaker 2:Yep, okay, so we're moving right along, all right. So my next one you know it kind of goes along with what we're saying, but I definitely would have told my younger self, like don't stress about the small little things, like don't worry about all the little things, like do your best to plan and you know, and and I'm talking as it relates to disability like, okay, you can't control everything, don't sweat what's going to happen if there's not a ramp, or what's going to happen if you know they, my friends, decide to go jogging and you can't like, you can't control everything and you don't know what's going to happen. You just do your best to. You know, be proactive. Like you, estella, you would call a restaurant and find out, you know, is it accessible? Can I get in? I, you know, for me, is there gonna be six flights of stairs? I can't do that, I can do one, but not six. Like I can't, Like not stressing about those little things that in the end you figure out a way to do or you don't do, you know?
Speaker 2:but like worrying it, just worrying and worrying, just it makes it worse and Both your body and just your emotional well-being. Like I would just sweat less about the small stuff.
Speaker 3:Yeah, no, I agree. I think it's so funny to you mentioned like I would have called a restaurant to see folks Accessible. My younger self never would have done that. My younger self would have worried my eye. That didn't. I always think you would do that like.
Speaker 2:No, not, you were cuz like. You grew up in a totally different way, like your parents you know we're very. They didn't have disabilities themselves, they don't have disabilities themselves, and your sister and you like were involved with muscular dystrophy and little models like Openly. Parents were into dancing and encouraged you to do all these things Despite having a disability, whereas my mom and you know and this is not to work on my mom, she's gone, but you know she did her best like I avoided this and it kind of taught me she didn't intentionally teach me this, but it did teach me that Having a disability, something's wrong with you that is bad. You can't you that. You should be ashamed. Your parents didn't raise you like that, so I'm shocked that you weren't automatically yeah, an advocate for yourself.
Speaker 3:Well, I don't. I don't even think I knew really what an advocate was. I knew, yes, my parents were great. I knew that Once I was in a situation I would figure it out or that people would help me. But I never thought to be proactive as far as accessibility Until later on. So I would worry about those little things whenever I was going somewhere new. So I think you know whether or not it's, it's easy to say don't worry, but I mean it could be just a phone call to kind of put your anxiety at ease, to find out whether it is accessible. I then make a choice depending on that or make a request Depending on what the answer is, instead of worrying and worrying and worrying for days or weeks about it. So I think it goes both ways, but it's definitely something that I think we both learned over the years to to be better at yeah, yeah, okay, are we up to nine?
Speaker 2:We are already up to nine. I know you guys are like, and I'm feeling like I need to change my nine, even though my nine was good. I like, you know, as we're talking, it's like I, my younger self, was so dumb that I feel like there's so many things. Please, how much time do we have? Oh, my god, we could be here for hours but truthfully, like I, I definitely Would have told my younger self, I would have just talked to myself that's my number nine.
Speaker 2:I would have spoken to myself in a nicer way. I would have given myself Like a break, I wouldn't have been as hard on myself. I would have learned self-talk, which is really just, you know, replacing those negative thoughts that we all have. Everyone has them, whether I have, people have disabilities or not. You know, there's like this little voice that says you suck, you're horrible, you're ugly, you're fat, you're this, you're that. I Would have if I could go back. I would have replaced those voices. I would have learned that skill to say wait, am I really fat or am I just not feeling great because I ate, like you know, two Reese's and a Snickers bar and it doesn't feel good. I would have given myself more of a break and talked nicer to myself.
Speaker 3:So that's my number nine, yeah, and it's right there. I think you and I share a brain yard because it's right there. With my number ten, I think it's pretty close. I wrote I would have addressed my internal ableism through therapy.
Speaker 3:Hmm, I think it's easy to say that we would have spoken Better to ourselves, but I don't think a lot of times we're even conscious that we're speaking to ourselves in a negative way. I think it's just so ingrained in how we see the world and see ourselves that we don't even realize it's something that can be Retrained or addressed or healed and we don't even know where it comes from. Right. So I think, having exposure to Therapy and kind of identifying that Shame that I did carry around, even though I had a great upbringing, there's still that level of internal shame that I had just because I had a disability and the world's Was so different than the way I was experiencing it. So I think by addressing that earlier, I probably would have made Different choices and maybe not tolerated some of the things that I tolerated in my younger years and had more confident to say, hey, this is not okay, mm-hmm, yeah, I, I, I can say no, I can create healthier boundaries.
Speaker 2:Yeah, I love that. No, you know, to conclude, you guys, this is a little plug, but I really think that I did a blog post and since this is the new year, 2024, obviously none of us can go back in time and I don't know if I'd want to. Even though I'm saying I'd want to, I don't really want to like right, I think I can make the changes now that you know I need to make and you know, looking back is sometimes helpful and what we just discussed is like helpful, especially if you're a parent and you want to do things different with your child with disabilities or, you know, maybe you're still working through some of those things and can parent yourself better. But I wrote a post that for the new year you remember those books, stella, I don't know, maybe this was my time and not yours when you got to choose your own ending. It was called an adventure books she's your adventure.
Speaker 2:And I wrote a blog post that I actually just republished and updated. I'm called choose your own adventure with the disability and the point of it really is that you know there are many endings Like this doesn't at 53, this is not my ending. Like I can choose other paths Right now, this is my path. But you know what, if I see that I'm going to the right and I'm not liking the right, I can just switch and go to the left, like, just like those books, like you get to choose how you want to live and how you want your story to unfold and if you're not liking how the story is going like, change the story, get to new characters, kick out whoever is, you know, hogging the scenes, whatever it might be, but you have the power. We all have the power to, you know, write our endings, to write our stories. So, with that said, happy new year to everyone.
Speaker 3:We wish you new beginnings. We hope some of these you know takeaways really resonate with you. We hope they bring value to you and maybe there's something that you can take to your current self from future self.
Speaker 2:Thank you all, and if you guys have a minute and would just leave us a review. I know it's hard to find, but if you're on Apple podcast right now, just go to the show and then scroll down and there's a part that says leave a review. This is really the only way that we get other people who might benefit from our content to see. It is that Apple says oh, there were good reviews. These must be a good show. Let's tell people about it. So, if you don't mind, we don't charge for these things. We love doing it, we love doing this podcast, but our payback or your payback to us really would be an awesome review that lets other people find us, so helps other people to find us, so always appreciated.
Speaker 2:Thank you all and goodbye. Until next time, let's embrace it. Bye, guys, take care.
Speaker 3:Hey Embracers, thank you so much for listening and supporting the Embracep podcast Brought to you by Launchpad 516 Studios executive, produced by George Andriopoulos and hosted by Laini Ispia and Estella Hugo. Our music and sound effects are licensed through Epidemic Sound. Embracet is hosted with BuzzFraud. Do you have a?
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