Ep. 100: Raising Awareness | Disabled People (+ Their Parents) Do Not Owe Society Anything




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So often, we feel that as parents, we need to be raising awareness about issues relating to disability. Maybe we’re sharing our lives on social media in an effort to show that our child really isn’t that different from the next and deserves inclusion. Or perhaps we’re teaching about the importance of being an organ donor because our child wouldn’t be here today without generous donors. Or maybe we’re shouting the symptoms and definition of our child’s rare syndrome in the hopes that they’ll finally get the funding needed to research a cure.

There are many causes to fight for and many reasons for doing so. But it’s important to remember that we are not obligated to raise awareness about anything. Becoming a parent to a child with a disability does not require it.

In this episode, I invite parents to evaluate their cause and their “why” against the question: “is this serving me? Is it serving my child?” Because at the end of the day, that’s what really matters.

Episode Transcript

Madeline Cheney  0:00 

Hello, you're listening to The Rare Life. I'm your host Madeline Cheney, and I am so excited to share with you Episode 100, which is such a big deal. I'm so excited. I'm so honored that we've gotten this far with all of your support, and all of you listeners that make it all worth it. Today, in this solo episode, I am going to talk about the concept of raising awareness. And I'm sure that, you know, especially for those of you who are active on social media, we feel kind of this pressure as parents to raise awareness. And I thought it would be a good idea to kind of dive into that and dissect it a little bit. And, of course, this is all 100%, you know, my personal opinion and what I've kind of observed on social media especially. And I really hope that I don't step on toes and make any you feel bad I didn't, it was never my intention to make you feel like a bad parent or a bad person. And anyway, I hope that it resonates with you and maybe gets you thinking, and that's kind of my goal is for us to just kind of ask ourselves and take a little pause, and to really evaluate our, you know, our role as parents and our role specifically in raising awareness. So when I first got on Instagram after having Kimble, I think he was like a year and a half old. And when I got on there, I started following similar, you know, like accounts as like, wow, there's a lot of parents on here talking. And that was super cool. Because I suddenly was like, that was kind of my first taste of community. And there are a lot of parents, you know, quote, unquote, raising awareness. And I think, you know, that's something that like, we kind of look to each other like, "Okay, what do I do?" Like, I'm, I'm a parent, I'm in this community, I want to feel a part of this community, what are other parents doing? And so I think that, uh, lot of us just jump right into that without super questioning it or wondering what we're raising awareness about, or really fine tuning it. I think that some of that can happen, as you know, we go along, and we become more experienced, and we can kind of adjust things. But again, I'm kind of hoping that parents who feel just kind of like this obligation to raise awareness that you don't have to feel obligated anymore, that you can fine tune your raising of awareness, if you feel like you still want to do that. So when I was kind of formulating this episode, originally, I thought of raising awareness as making people aware of our children's specific rare diagnoses. Like, that's what came to mind when I thought of raising awareness is like, oh, you know, here's chondrodysplasia punctata x-link, like type one. These are the symptoms. This is how long their life expectancy is. This is, you know, they need a feeding to your beloved. Well, I got it going on like that. And it was really interesting, because I opened up a question on my stories on Instagram. Which if you want to participate in this kind of thing in the future, you're not following me yet, you can follow me at the underscore rare underscore life. There's a link in the show notes. When I asked parents on their okay, like tell me about, you know, raising awareness, like what do you raise awareness about? What's your why behind that? I was pretty surprised by all the different answers. And I was like, okay, like, there are a few of those saying, raising awareness about my child's specific diagnosis. But for the most part, there were lots of different reasons and different end goals. And I was like, okay, like, I feel like this is kind of shifting how I feel about the whole thing. And thus, this whole episode kind of evolved because of that. So thank you, to those of you who participated in that, you know who you are. So I just, there are a myriad of things that we raise awareness about, and a myriad of like, end goals and like, what our purposes are behind it. And so a few of them that like I gleaned from each of you and those who answered and just from my observations, some things that we raise awareness about could be the specific diagnosis, like I mentioned. So kind of like that. Here's the description. Here's like, what you could basically Google about this... this rare genetic condition, or maybe raising awareness about like one of the symptoms of that diagnosis. So maybe like, what it's like to have a child that's too bad, or, you know, has epilepsy or whatever. So kind of more general. Some of us raise awareness of what it's like for us as parents, you know, maybe what it's like for our child as far as we can tell as the parent. Several of you said that you raise awareness of the importance of being an organ donor. So cool. And I know a lot of us raise awareness in an effort to illustrate the value of children and people with disabilities, which kind of makes me hurt that that's even a goal that we feel like we need to have.


You know, you hope that that kind of thing is assumed and that society doesn't need that. But yes, that is a big reason a lot of people raise awareness is like, hey, like, my child is just as worthy as your child. And you know, my child also wants people to play with her, even though she's not, she's non speaking, you know, things like that. And then there are also those of us who raise awareness about a specific diagnosis, for the benefit of other parents who have a child with that diagnosis. You know, maybe they were like, hey, like, when I Google searched, you know, Pfeiffer syndrome, it was really bleak. And I had no idea what life would actually be like, and seemed just terrible. And so you know, there's people like, I guess I had on previously Felicia Johnson, where she was like, Hey, I'm gonna make an account. And I'm gonna talk about Pfeiffer syndrome, and what it's like for us in our family, so that there's kind of a more human resource that people can go and see and get a glimpse into what life might be like, and like, oh, that actually looks awesome. And I can do that, and, you know, just feels more human. And then another reason someone listed is, you know, social injustices for those people with disabilities. And so, you know, raising awareness about social barriers and an accessibility and, you know, trying to encourage people to reevaluate how they, you know, think or feel about people with disabilities, which I think is also very cool. So, I mean, like, and obviously, there are so many more reasons than that. And I hope that as I'm listing through these, you can kind of be asking yourself, if you consider yourself as like, oh, yeah, I raise awareness. Okay, like, so I think it'd be really pertinent to ask yourself, what do I raise awareness about? Is it one of those things I listed? Is it another reason I didn't list it, because I know, I didn't include everything. I think it'd be impossible to include every reason ever. And then, I also encourage you to ask yourself, What's my goal behind this? Because I think, again, if we enter this community of parents, and we're like, this is just what parents do. Like, that's not you probably don't have a, like an actual, you know, tangible goal, like, what do I see is like, the purpose in this other than this is just what I do. So I encourage you to think about that, like really evaluate, like, okay, like, What is my purpose in this. And, you know, some of those reasons might be to foster a greater acceptance of disability and of our children, and in hopes that people will better support parents and families, you know, if you're looking for that social change, or greater accessibility, and minimizing ableism. And, you know, maybe you want to help other families feel less alone, maybe you are sharing all about your child's rare diagnosis, because you hope that they'll get funding for research. And, you know, there was one message that I received that I actually just kind of want to read it word for word, it's from Meg Dolly. And I thought it just really was an interesting way to look at raising awareness. And in fact, to be honest, it did kind of shift my formulation of this episode. So I'm gonna read what she said. She said, "I would say I tend to bring awareness to things that I feel my old self, before becoming a mama to children with disabilities would benefit from. I hate to say it, but until three years ago, I wasn't making any effort to understand the appropriate language to use, or ways I could understand disabilities better, or grow in that area. I'm pretty sure I still thought disability was a bad word. And I didn't know where to turn to learn how to do better. So yeah, I'd say I post as if my audience is Meg, more than three years ago."


So that kind of goes along with like that social justice and you know, trying to eliminate ableism, and things like that. But I think that it can also be brought in to basically sum up, regardless of which answer you chose is like, hey, what's my why, and what am I raising awareness about?


I think we're raising awareness about things that we didn't know, before, that we didn't know before. And so we are like, hey, well, I wish I had known this before. And it's something I can share with other people. And so I think a lot of it is just sharing insight, when one form or another, we're sharing insight. And I think that it can feel kind of therapeutic. Or it can feel like we're kind of taking our power back if we feel otherwise powerless to help our child in different ways. Like, well, I can't save my child, which that's beyond words like to feel that way. And so I think a sharing insight and things that we've learned can kind of help us feel like we have a purpose, or that like the pain that we're going through has a purpose because we can share with other people and we can talk about things and improve the world in some way. And giving our pain purpose is is super healing. I found that with the podcast, I know that we've all found that in different ways, a lot of us have found that in different ways. And along those lines, like the whole, teaching people about our child's diagnosis, in hopes that they will get more funding for research or any funding for research. I've been approached by quite a few people who asked me to have them as a guest on the podcast, and they say they want to raise awareness about their child's diagnosis. And you know, I kind of, I'll say, kind of the same thing like, oh, I'm sorry, like, that's not what the point of this podcast is. Like, we actually talk very little about their actual diagnosis, which I know sounds silly. But you know, I do find that there's more value, we can help each other more, instead of knowing about each other's kids diagnoses, being able to raise awareness about what it's like, for us as parents, and so you don't feel alone. And you're that solidarity and that healing. But I'm kind of struck by how many people and I almost feel like this energy from them, like this frantic energy, like, I need people to know about my child's diagnosis. Like, it's so rare. No one knows about it. And if I can just tell enough people about their diagnosis, then they'll find a cure, they'll be able to research it and they can find a cure, my child will live. And oh my goodness, like that, that just oh, it's so heartbreaking like to, to feel that frantic Mama Bear energy, like I need to save my child. And this is how I'm going to do that. I had a specific instance that this really what it was kind of an extreme version of this, but she messaged me, this mom, and it was very clear, she'd never listened to my podcast, she was just messaging every person she possibly could and was like, Oh, please, like, let me be on your podcast. I want to tell everyone about my daughter's really rare diagnosis, you know, it's the genitive, she's gonna die from it, we need to get funding for research. And it's just, I gently told her like, I'm sorry, that's not what this podcast is for. If you want to talk about your experience with that, like, emotionally and personally, like, you listen to the podcast first, like, Yeah, let's do it. But I didn't hear back from her. And I just ached for her because I was like, I... I'll say this with a disclaimer, I'm not a research expert. I have a, you know, a pretty surface level knowledge about how this works of getting, you know, medical research done and funding for that. But with my little experience of that, and my little knowledge of that, I just think to myself, you know, that like all like there's there's things like my dad passed away from brain cancer. And it was the most deadly, but the rarest form of brain cancer, glioblastoma. And there's not a whole lot of money in that research, because it's, it doesn't affect as many people. And that sucks. And I was really sad when my dad died. I know that's very different than having a child die. But I guess what I was thinking and I kind of what comes to mind is, so if my dad with this brain cancer that is obvious. I mean, everyone's heard of brain cancer, like it's wildly more common than most of our children's rare diagnoses and rare diseases. If that's been under researched, then what hope do we have to get our children's rare diagnoses research? And I don't know, that might be this, like, super cynical way of looking at it. But I guess like, what comes to mind, like with this mom and other people that I hear from that are just frantic to help other people know about their child's diagnosis is kind of this idea of like, can you ask yourself very honestly, do you really think that this really will be fruitful?


to illustrate the value of children and people with disabilities, which kind of makes me hurt that that's even a goal that we feel like we need to have. Am I frantically going around sharing about my child's diagnosis? Just desperate for a cure? Right, like, as any parent would be just desperate, but is it doing anything? Is it really going to happen? Is it really going to be fruitful? And sadly, tragically, I'm not sure that always is the case that it really can make that much of an impact with research and with funding. Because, you know, unless we can have like, a huge amount of following and everyone's donating to that research like maybe that would be one way for people to like the more they know about it, you know, you become super famous on social media or something like that and people donate. But I guess what I'm saying is like I just don't for the for the Average Joe. I just wonder like if that is the best use of our energy and our time, because it breaks my heart like with that mom, and I'm sure that she was feeling like this sense of like trying to take back some control because I think that's part of it is like we're like, how do I save my child from their own body? And I think like, that's our desperation to save our kids, or to give them a better quality of life. You know, we'll do anything. And so I mean, like, just to share like a personal story with that really quick. I mean, this is kind of a side note, a close loved one of mine just was admitted to the psychiatric ward at a hospital to prevent them from killing themselves. And it's just that same feeling of like, you know, I, we don't feel this as much anymore with Kimble because he's stabilized so much, but just like that feeling of like, I can't, bow do I protect these people I love from their own body. Like, that is such a terrible feeling. Like, don't be like, I need to save you from your own body, I need to save you from your own mind. Like how on earth do I protect you from that? You know, if it's a bear, I can go fight the bear. If it's like some criminal coming to kidnap, so you can do things to try to protect and fight against that, but like, how do you fight against their own bodies that are, you know, you feel like are killing them? Or making them suffer? And it's just a feeling of powerlessness, unlike any other. So like, with this loved one that I have, it's like, what can I possibly do? Like, how do I, how do I save you from this, and from yourself? And so, anyway, I feel that and especially right now, because with that loved one, it just was yesterday, and it's been very raw and on my mind, and like all those feelings that I also had about Kimble. And you know, when we didn't know if he would live, just that feeling of I'll do anything to save you from your own body, to keep you here longer. And so I say that all of that with about raising awareness and stuff in that way, with the most love in my heart and my ache in my heart for those of you who are kind of fit in that category. And yeah, I just really hope that this is a chance for you to kind of take a step back and to be like, is there something that I could dedicate my time and my effort and my heart to that would make a bigger impact on my life and on my child's life and those around them? So I'll just kind of like pose that question. I don't know the answer. I don't know what would be best for each one of us. We're all very individual. But I'm just going to kind of put that question out there about that specific kind of raising awareness. And that kind of leads me to just general, you know, raising awareness, any of those reasons that I already listed, you know, a few, you're like, Oh, I fall under that category, or this category that, you know, whatever. I also I encourage all of us to question is my mode of raising awarenes, my what, and my why, and my how, are those things serving me?


Is it serving your child? And I know that I think a lot of the reasons we raise awareness is for the benefit of society. But again, I encourage you to ask yourself, is it serving you? Is it serving your child? Because I don't know if you feel like, you know, maybe you need, I'll give you this permission. I'm not that I need to give you this, but you don't owe society or anyone, anything. Let me say that, again. We don't owe society or anyone, anything. There's a lot of great reasons and a lot of great things to raise awareness about. And I do think that a lot of those things would probably benefit society. But just because our child was born with a disability, or a medical complexity does not mean that all of a sudden we owe society anything. Because we don't our child does not exist to educate others. We are not here to educate others unless we choose to do so unless we feel like it really does service. And I know that there are a lot of us that find a lot of fulfillment in doing that. And I think that's great. And with this, I hope that like if there are some of you out there listening, that have felt kind of like well, this is what we do as parents and I need to raise awareness, I need to help society be less ableist and da-da-da-da-da. Like, you don't need to. You don't need to win alternative to that. Like if you're like, Hey, I've been raising awareness about this, and this and this was my goal. And I feel really anxious about it. And I'm constantly thinking about it, and this is not serving me or my child. Well then I would just venture to say that if you pull back from that and decide to kind of like, either put the brakes on it or stop it completely. Just you and your child existing in society and not being ashamed or embarrassed or bashed about your child's disability, their medical devices or assistive equipment, all the things. If you are just living life with your child unabashed by those things. You're normalizing it and I think that's super powerful for, you know, society to see a disabled person, out and about and at the library with their feeding tube, things like that, like you are normalizing these things. And I think, again, you don't owe anyone anything, but just by living and existing. And you know, maybe you'd like to be on social media and you'd like to post pictures of, you know, your outings and what you're doing, and oh, my child's in the hospital, just life with a child with disabilities, you are normalizing it. And there's one out of four people living in the United States, and this probably is roughly the same other places, too, I can't see why it'd be very different. One out of four people are disabled. And so I think it's so funny, because there's like the phrase, we call it normalizing and I'm like, but it already is normal. Like, it already is so prevalent. But, you know, I think that we ought to get to the point where we feel comfortable giving a tube feed at the library, or, you know, talking about therapies with our friends, and you know, just living our lives without being ashamed or bashed or, you know, wreck losing ourselves and isolating ourselves because we're different. Like, one out of four, live with disability. And so I think allowing more of society to see those things just as we live our lives, like, I think is really impactful. And you don't need to be making posts about disability all the time. You don't need to be bringing up ableism all the time. If it doesn't serve you like you don't need to be.


Again as a reminder from the beginning like this is raising awareness according to Madeline. Like I this is my observations, my opinions from the years in this community, but I don't know I not doing really anything, you are still doing something for the cause or whatever, like you are still normalizing disability. And I think that's really cool. Because if you do for whatever reason feel like but I still need to help society like, there you go, there's your out, you can not do anything and still be doing something. And you know, along with that, like the feeling that we owe society like I got that from-- there's this book--this kids book. It's called What happened to you by James Catchpole. It's a fantastic book. I think it's my favorite kids book about disability. It is written by a man with a limb difference. And so you know, he's disabled. And it's basically a push back to the whole antic of just ask like, just ask us about our disability, we'll explain it all. And you know, we'll educate your kids. And we love questions like that kind of mentality where like, this book kind of explores, like our kids with disabilities, adults with disabilities, the parents of kids with disabilities, we don't owe anyone an explanation. And they're just some really great insight from disabled adults that I read online, on Instagram about that concept of like, respect privacy, and you can't just walk up to someone and say, “hey, like, why are you in a wheelchair any more than you could walk up to someone and say, "hey, why are you pregnant?" Or, you know, ask these really personal questions.


And with that, I just, I've learned so much from listening to the disability community, and, you know, listening to disabled adults, and what they have to say about it. And, you know, I think there is a lot we can learn from them about raising awareness. And I think I have this image in my head of like, ways that those of us who are you know, online and talking about disability, like a way to explain like, how I see it, so I picture that disability is maybe like something in the center of a semi circle. And the first line of people, by that something are disabled people. There are kids. There are disabled adults. There are people who are living with disability firsthand in their bodies. And the next layer of people, you know, maybe on the just one layer further from that object in the middle, which represents disability, that would be parents and caregivers. So we are there. We are not the people who are disabled, we are not directly impacted firsthand by disability, but we are very close to it, especially as our kids are young, and we are actively caregiving, and we're bringing them to therapies and we're at the hospital with them. And we feel so connected with them that it feels like it kind of is us, right? Like we're really close to that but there's still that layer of people that are directly touching that, that center that disability, and then outside of us is society. Well, maybe there's a layer right outside of us that's like our family and friends, right? Because they might have more of a glimpse and they're closer to disability and then there's just society. And when we are advocating or raising awareness or sharing our experiences, I feel like we are either facing outward towards society, or, and I think this is somewhat common. And so, I feel I feel like I am facing sideways. So I'm looking back at the row of parents, right? Because I'm a parent, what I post what I share in my podcast, like all of my advocacy, and my quote unquote, raising awareness is for the benefit and is directed towards parents. And you know, occasionally I'll I'll say something that's like, oh, society, but like, to be honest, can I confess something? So when I'm saying like, dear society in one way or another on like, Instagram, it's for the benefit of you guys. Like, it's the benefit of other parents. Because I know that like that feels rallying, you know, all the things I do are in an effort to uplift and strengthen, and comfort other parents. And so like, that gives me incredible direction, because I can kind of like, keep going back, like, okay, who's my audience, it's the parents like, they are the people I want to help. And then I think a lot of parents in that row with me are facing outward towards society. And that is kind of like the main goals like how can we help society understand disability? How can we help remedy these social and justices and accessibility and you know, all the things or how can we share with them what it's like for us, as parents. And I think, standing behind us as we're facing outward, kind of like a little army, but I hate to think of it as like this really aggressive thing, kind of like a little army, if you picture it that way. The people standing behind us are disabled people. And they are often directed towards society as well, I know that there are also disabled adults that are mainly directed towards, you know, sideways in their lines, so they're talking to other disabled people, or maybe even parents, but a lot of them are facing outward towards society and trying to make that social change. And I think it is very important for us to make sure that we are aligned with those people standing behind us the people that are closer to disability than we are, while also acknowledging that our lived experience is different than the people standing behind us, than disabled people. Because we are for the most part, I mean, obviously, they're, not everyone is this, but a lot of us are non disabled parents to disabled children or non medically complex parents to medically complex children. And so it's different. We do, we are both very close to the center of disability. But our proximity to it changes a lot of things like we can relate on lots too but like, it changes a lot of things, I think there's a lot of times that, you know, disabled adults are looking at things that we write, or we share and like, you don't understand what it's like to be disabled. And I think a lot of times, we as parents are looking towards what disabled people are saying and posting, and we say, but you don't understand what it's like to be the parent and watch your child go through this. And so there is that unique situation like, we are not the same line of people, we have not lived the same experiences. But we can be aligned, generally, we can be fighting for the same causes together. And again, that's why I really encourage looking at disabled adults and what they're writing and what they're saying. And so we're aware of those things. So we don't inadvertently raise awareness in a way or advocate in a way that goes against what they are trying to do. And you know, the social agendas that they are pushing, because at the end of the day, they are closer to disability. And they are living with that in their bodies. And so that is kind of a plug for that too.


I know that a lot of you do, you know, the research and you read the books and things like that, and I'll put links in the show notes for some of my favorite disabled people that I follow on Instagram and have learned a lot from and you know, some of my favorite books that they've written. But I think that's a really big part of this. I think if we march in and we start raising awareness towards society, but we have no concept of what issues disabled adults are facing, then we're not really going to be the most effective at that. And it needs to inform us and even if we say "I don't agree with this certain thing, and I'm going to do this other thing", which in some situations, maybe that makes sense, because you know, we're all unique, we all have different experiences, we have different opinions, you know, whatever, we're diverse, and I'll say do obviously, not all disabled people agree. Obviously not all parents agree, right? There's like this huge spectrum. But I think that like we need to be aware of that thing. So we're not ignorantly going against what they're saying. Or ignorantly spreading things that are less than helpful. And just even things like verbiage we use, like I mean, I was using the phrase special needs for a while because that's what other parents were saying. And then wow, like look at these posts that disabled adults are talking about how that's a pretty harmful term to use. Like okay, let me like see how I feel about this. Let me adjust how I'm speaking about disability. And so just things like that I think can be super eye opening and help us work together in a more unified way. And I will say to here is a little plug for episode 85 that I did a while ago, in season five, with disability activist Emily Ladou, it was a super great episode very popular. So I'm guessing most of you have heard that. But if you haven't yet, check the show notes for a link to that one, because we talk about kind of our relationship as parents with disabled adults and just some touchy things. But it turned out to be a great episode and very respectful. It was a very popular one. So I hope you go check it out, if you haven't yet. So I think we can, we can learn a lot from what disabled people do in raising awareness. And in my experience, and you know, those of you who do follow different accounts of disabled people and you know, read the books and things like that may have, you may have noticed this too, but there's not a lot said about their diagnosis about their specific genetic syndrome or chromosomal diagnosis or whatever. I couldn't tell you, for a lot of the disabled adults I follow, I couldn't tell you what diagnosis they have. There's a few of them, I think I do know, but it was very general. It was a mention I have SMA and then moving on. And I guess this is another case for kind of talking about more general things I think can be more impactful. I think that's probably why disabled people do this. So instead of, you know, talking all about chondrodysplasia punctata x-linked type 1 which has 125 people in the world with it, like, you know, that's my son's diagnosis, for those of you don't know, I can talk about having, you know, like, my son has dwarfism. And my son is hard of hearing. And my son has vision loss, like I can talk about these concepts that are associated with my son's rare diagnosis, but are more broad, like there's a lot more people with each of those diagnoses. And so and a lot more parents, right, because that's my goal, is to talk to other parents of these similar diagnoses to be like, "oh, like, let me talk to other parents that have kids with dwarfism, let me talk to other parents of kids that have feeding tubes" Like things that are much more common, rather than let me and I do find other parents with CVX as well like that there is a lot of value in that. But I guess, from my observation, and in my opinion, it seems that raising awareness about disabilities in general, can be really powerful. And raising awareness about a medically complex child can be really impactful, or a child with a feeding tube can be really impactful. And so that is food for thought as well. Like, maybe just ask yourself, :Okay, like, again, what am I raising awareness about? how impactful is this going to be? How likely is it that people who are reading this are going to meet someone with this diagnosis? Am I speaking from my experience as their parent instead of representing how it feels for my child to have a feeding tube?"


For the most part, we don't really know, like, we can pick up clues. But I think like, again, like this is something I've learned from the disability community is like, we need to be speaking from our experience our lived experiences. So you're the expert on what it feels to be a parent of a child with a feeding tube, or as a parent of a child with epilepsy like to speak to things that we are expert on is powerful, because we don't need to have lived experience with those disabilities to be able to speak about them, like we can talk about from our perspective. That's valuable, too. And so that's another thing to take into consideration. And I will say to like, again, another thing I've learned from the disability community, and I've evolved, right, like none of I feel like we all are launched into this, like, I'm a parent, oh, I should raise awareness. And then we like spew all of our children's like medical information and like pictures and I feel like, we all start there. For the most part, we all start there. Like, I am no exception to that. But I also encourage each of us to take in consideration our children's privacy, which I know can feel I feel like it's harder when our children are younger or their non speaking or you know, things like that because they can't really give us permission or deny us permission to post things. We're still not there with Kimball he can't tell me what he's okay with me talking about what he's not okay. So if you're in that situation, you have a child that for whatever reason, can't give permission. One thing that I've heard that I really like is to kind of ask yourself, would I be okay if someone posted this about me and posted this picture of me, right. And I think that can be a really good gauge, because then we're giving them the respect and the privacy that they deserve as a human being. And kind of going back again, like, as a disabled person, they don't owe society anything. And as their parents, we don't owe our child's privacy to everyone. We don't. And in fact, we need to be the protectors of that, you know, and I think that goes too far in person. Like, if we're at the library, and someone says, oh, like, you know, what's up with that feeding tube? Or like, why is he so short or whatever? Like, I think we can gauge that and be like, do I want to tell them, you know, kind of a general like, oh, he has a rare medical condition? Or do I want to be like, that's personal. I don't want to share that. Right. Like, because we do not owe society anything. So I think always taking in consideration, our child's privacy, you know, regardless of what we choose to, you know, like, Oh, I'm gonna raise awareness about a, and my reason is be. So now I can just share everything about my child, like, I think that's, you know, we need to be aware of our child's privacy. And I think that that can go a long ways is to be aware of that and to be thinking about it and to do our best. No one's perfect. I think we're constantly dancing, that line of like, how much is too much to share, because our stories are so intertwined. But and this is something again, that we talked about in episode 85. So again, go check that out if you haven't yet. And I've noticed that like, one day or month of the year, or maybe several, probably several, because our children usually have several sub diagnoses. But awareness days, I think, are really interesting, actually, to be honest, not a huge fan. Because we feel as parents, and I'm guessing that a lot of disabled people feel this too. But like, there's this pressure, it's like, all of a sudden, oh, if it's Awareness Day, then I need to go tell everyone about my child's diagnosis. And we don't. And, again, we don't owe anyone anything, we don't owe society anything. If it's feeding to Awareness Day, if it is, you know, your child's specific diagnosis, if that has an awareness day or month, I know it CDP x one Awareness Day, which doesn't exist, but maybe it would someday, I don't know. Like any of these random awareness days, or epilepsy Awareness Day, this is that awareness day, if you feel like sharing about you know, your life with your child with that are like, you know, whatever, like, power to you, but like, this is your official permissi, if you feel like you need it, to not post anything about it, you don't have to.


We, as parents, when we have a child with a diagnose some sort or a disability of some sort, we are not suddenly obligated to raise awareness about anything. And I know I've said it so many times. But that really is the theme of this is like you don't owe anyone anything. And so, in conclusion, I just I hope that this has been a good chance for you to really take a good hard look at the awareness that you are raising, if that's what you're doing to kind of reevaluate like, man, is this the best thing? Are there ways I can adjust this to better serve me? And to be more fulfilling for me? Or for my child? And if you want to ask yourself ,for society? And am I looking towards the disabled community for cues on you know what to say? Or how to say it, and to kind of just be on the same page with them? And you can also ask yourself, Do I ever feel guilty because I'm not on the raising awareness boat? No, like, maybe you're not on social media at all. And you've never raised awareness. And maybe you're like, This is the first time you've heard about this whole, like, this obsession. And let me just say right now, like, you don't have to feel guilty, like just continue normalizing. That's what you're doing. Just live your life and worry about you and your family. Like, that's great. I also want to like bring up to like that, regardless of what you've been doing, and what you are going to do if you're making changes, or if you're continuing what you're doing. I encourage you to deflect any kind of shame, or any kind of embarrassment or I'm not good enough and what have I been doing and any thoughts that might pop into your head like that, as you remind yourself that the things that you've been saying and doing in the name of raising awareness. I can basically guarantee I've been based in some level out of love, right like thinking you're doing the right thing, believing you're doing the right thing for your child for you for society being like "oh, this will fix everything if I just do this thing." Pretty much every response we have as parents is somehow based out of love and wanting to be you know, the best parent we can't be for our children. And so you know that right there is a huge deal. And I hope that you are gentle with yourself as you you know, adjust things if you feel like you need to or you keep on keeping on the way you've been going, and if you feel like emblazoned in like, Yes, this is, I'm so glad I've been doing what I'm doing and I'm going to keep doing it. I hope that you feel love and that you know that you belong in the community, regardless of where you fall in there and that you are not alone. Check out the shownotes for links to follow me on social media if you don't yet and for links to all of my favorite disabled adults that I follow for insight from them, and some of my favorite books. And there's also a link in the show notes for episode 85 with Emily Ladou about a relationship with a disabled community. And there's also a link for an episode I did a long time ago with a mom who she shifted, she used to like raise awareness a lot. And she shifted from that to helping shift policies like state policies to better serve disabled people. You know, she's been looking at like, Hey, where are the gaps for my son? We need to go advocate and you know, on a political level to have better rights for my son, or better accessibility or things like that. And that's, that was a really cool episode. So if that is something you're like, hey, you know, I want to like make an impact. And I want to make an impact on like, a really like ground level way that really affects you know, all the families in your state or where you live. Check that episode out. It sounds like it, I don't know, I feel like it sounds boring, but it is not. I thought it was so interesting. So I'll put a link for that in the show notes as well. Join us next week for Tiffany's story. Tiffany has two daughters, one who was born with trisomy 18, which is a rare chromosomal disorder, which is deemed incompatible with life. And so most doctors refuse to give the life giving care that she needs. It's a great episode. Don't miss it. See you then.

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Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a


Hex Code

68: Dipping My Toes into Educational Advocacy