Words like 'disability', 'differently abled', and 'identity-first language' might seem interchangeable, but as we peel back the layers, the significance of each term emerges, shaped by personal experiences and societal perceptions.
The episode casts a light on the journey of understanding and accepting disability, not just as a concept, but as a profound aspect of human diversity. Sharing the intimate progression of my relationship with my son's disability, I open the floor to the importance of honesty and the strength found in community support. Evoking change in our subconscious beliefs, we explore how language can forge new paths toward love, compassion, and authenticity. Join us as we challenge ourselves to grow and enrich our perspectives on disability, transforming how we relate to others and ourselves in this ever-evolving conversation.
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Words like 'disability', 'differently abled', and 'identity-first language' might seem interchangeable, but as we peel back the layers, the significance of each term emerges, shaped by personal experiences and societal perceptions.
The episode casts a light on the journey of understanding and accepting disability, not just as a concept, but as a profound aspect of human diversity. Sharing the intimate progression of my relationship with my son's disability, I open the floor to the importance of honesty and the strength found in community support. Evoking change in our subconscious beliefs, we explore how language can forge new paths toward love, compassion, and authenticity. Join us as we challenge ourselves to grow and enrich our perspectives on disability, transforming how we relate to others and ourselves in this ever-evolving conversation.
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Hello and welcome to the Special Needs Bomb podcast. I'm so glad you've tuned in today. I'm excited for this conversation. This is one that has been ruminating around in my mind for quite a bit and it felt like the right time. But before we get into the main topic, I thought I'd give you guys a little humorous story about my own personal journey over here.
Speaker 1:Last week I left by Overdrank Water, and when I mean Overdrank, one of his conditions is called diabetes and syphidis, which means that he can be very, very, very, very, very thirsty and drink a lot of water. I can't say exactly how much water he drank, but I think it was. I'm going to say it was between 32 ounces and 64 ounces. We could say that, and I didn't know it at the time, but I did know this when he got to the stairs and he vomited, and so you know, firstly, I'm worried about him. Why is he throwing up? What's happening? Like you know, it's like it was very sudden, and then, of course, we get him stabilized, and I'm now thinking about my carpet, that's like you know, a gallon of water is a lot of water. Okay, not to worry. I was like, let's just get the kids to school. I'm going to throw down some towels, that we'll deal with that later. I did not dealt with it later, but then I think it was the next day. It wasn't the same day, and when I say I dealt with it later, I mean a lot later. I think the next day. I was like what is that smell? Because it was not a vomit smell, it was a fish smell. I was like why does it smell like fish? In my house it smells real bad like fish. And then it occurred to me that he takes Omega 3. And what does Omega 3 come from? It comes from fish. And so, long story short, I then realized that tackling this smell was going to be the feet of this entry, because I've tried to get that smell out of things before and I will say it was tricky. It was a group effort. One of my neighbors gave me her cleaning solution for a carpet, the rental machine. Another friend, an old neighbor, dropped off her deem cleaner and we got to cleaning and I'm going to say we're like 90% better, but we're not 100% and I kind of have lost hope of getting to 100% with how much effort I've put into this. I think at this point I might need to just get new carpet, which is not altogether terrible, because maybe I needed to push to get new carpet, maybe I was already pushing it too far. Well, that is what's happening over here.
Speaker 1:Okay, moving on to the conversation that I'm excited to have with you and I mean, I'm saying conversation, but clearly it's a podcast, so I'm going to be talking the whole time and you are going to be listening. But if you're like me, oftentimes when you listen to a podcast you start thinking more deeply and you start kind of having your own thoughts, and so I hope that that is the experience that you're having. And I do have a space where we can have that dialogue. It would be over on Instagram, but maybe better over on Facebook, where I have a private group for this podcast community, where it's just nice to be able to go back and forth in conversation, Alrighty.
Speaker 1:So today's topic, today's main focus, is going to be around what I'm calling term confusion and the topic of these. Terms, like I said, have been on my mind for quite a while. If you're on social media, you've probably seen something about terms. My guess is that you have. If you're not on social media actually, my guess is that you haven't, but these are my guesses, because I hear a lot about it on social media. I do not hear a lot about it or see anything in the conversations in my local groups and community.
Speaker 1:And when I say terms, what I'm specifically talking about? Words like disability, differently abled, special needs, medically complex, identity, first language, handicapped, etc. So we could go on and on. But these are terms that historically have been used very different over time. Some of you might have some strong feelings about some of these words and not about others, and some of you might be like what are you talking about? I haven't heard any of this before. Well, welcome, we're going to talk about it.
Speaker 1:And the reason now I felt like the time I wanted to talk about it is that I was having a conversation with somebody I've just met and it's kind of getting to know her long story short. I asked if she identified as a special needs mom and she was like I don't know and actually I'm really confused. So I thought you know what? Let's talk about it, let's bring this conversation into the light and we all might still be confused because there's a lot around this, but we can talk about it together and I want to be clear here that this is again like a conversation, not me saying this is what you should do. So I'm very clearly not making a declaration of what's wrong and right. You'll hear that more later in the episode. And I will also say that this is a conversation or an episode that's heavily based on my own personal journey. So for some of you, you might feel like, wow, this was exactly my experience, and for others of you, you might have had a very different experience, which I think is perfect, because we like diversity and I think having people that have had very different experiences will aid in this conversation and help us develop our own thoughts and help us drive culture, and my intention is to create a space that is safe, that we can discuss and we can explore and perhaps learn from each other and our children.
Speaker 1:What's at the heart of all of this conversation around what we are supposed to and not supposed to call ourselves to describe our mothering experience or describe our children, I believe is a heart issue. It's a relationship to disability, or might I say it's a dysfunctional relationship. As we know, people with disabilities of any type have historically been marginalized. It's a very still to this day, as we know, because we're living in a very marginalized community and in many cases there have been many people that have been treated less than human in our history. And so from this vantage point I think it boils down to this point is that our society needs a heart change around disability.
Speaker 1:Now, this is not likely surprising to any of you, but I think the way that it trickles out into again the term confusion that I'm seeing, I think is still exposing our emerging and evolving relationships with disability, and so my assertion is that, because of this relationship or, as I said, dysfunctional relationship is kind of the heart of the issue that the term confusion that we're seeing is not caused by the language that we're using, but it's caused by the process or the evolution in changing and shedding what we subconsciously learned growing up in our culture. So I would say the vast majority of you that I've talked to have not grown up as a disabled person. There are definitely some of you that have. So therefore, many of us were grossly ignorant of the whole disability experience before we became mothers to children. We learned a lot of things growing up and, oh my gosh, my husband and I talk about the things we said that were socially acceptable back in the day and we're like wow, whoa, that is not okay and it's embarrassing to say, but I bet a lot of you could say the same thing, and I know you can because I've talked to you about it. So it's safe to say we're changing for the better, but we still have a little ways to go.
Speaker 1:The way people feel about terminology has to do with these disempowering and subconscious beliefs, and so we're gonna look specifically at two different angles to further explore this topic and to kind of I don't want to say challenge our thinking but I guess to inform our thinking, to help us be clear about what we want to do moving forward. So the way we feel about terminology, it's going to be very informed by the two things I'm going to mention here. The way we feel about terminology has to do with these disempowering beliefs that we are not usually even conscious that we have, and so we're gonna look, as we go on this conversation and this podcast, we're gonna look from two different angles to explore how to bring some of these unconscious thoughts and experiences to our consciousness, which gives us then the ability to kind of bring some intention, to bring some choice to the matter, instead of just operating on our default, we get to think with a higher a little higher thinking part of our brain and to ultimately then choose from a place of love and compassion and Openness and authenticity and all those things that I think will contribute to us really loving and loving. Well, all right, let's look at the first one here. We're gonna dive into the concept of relationships, actually have a whole episode on this. I will put it in the show notes. It was, I think, november of 2022, if I recall, and so I deep dive in relationships there.
Speaker 1:But I'm gonna give a quick little Snip bit on relationships and actually my favorite definition of what is a relationship Like what are you even talking about? And I Define a relationship as a collection of thoughts about a person or thing. But we look at this all the different thoughts that we have about something or somebody Will be the relationship that we have and, as we know, relationships grow over time. They change, some of them improve, some of them decline. So we'll start by looking at Relationships that we might have with our husband.
Speaker 1:So first I want you to think do I feel like I have a good relationship with my husband? Hopefully, some of you say yeah and I know some of you say no. But think about All the things. Like if I had to say what are the top three things that you think most about your husband, like what are the thoughts that you have about it? And if there are thoughts like he's got my back, he's reliable, he's smart and helpful, it's very likely that you would have what you would describe a positive relationship with your husband. Now, if you're like he doesn't listen, he doesn't pull his weight, especially with my children, and he doesn't value what I do Ouch and I know some of you are there that's likely going to expose that you are having a undesirable relationship with your husband. So this is just an example of how our Our thoughts, the collection of our thoughts, is the relationship we have with something.
Speaker 1:Let's look at one more, because this is just so fun Money. Ooh, money is a good one because money is so complex. There are so many different variations of relationship with money. Some of you could be like money is abundant, money is helpful, money is so easy to get. Some people have this relationship with money. I'm not quite there, but not that there is like better, but it does show it's an extreme. I'm purposely given an extreme, so this would indicate a very different relationship with money than somebody who has thoughts like Money is evil, money is hard to get, there is never enough money, so I'm just showing, hey, these are different collections of thoughts that would Create very different relationships.
Speaker 1:All right, now let's turn our eyes to our relationships with disability. What are your top three thoughts when you think of disability and I'm using disability as the broadest language, perhaps it's even just because I've more adopted it than others, even though I use a lot of different words synonymously. So maybe you say maybe the thing that comes in your mind is disability is hard. Or maybe, from where you're at, disability is unfortunate. Maybe, if you look back at where you started, you would say disability means that you're a less than Maybe, and this might still be where you're at, and that's okay. It's better to be not disabled than disabled. And I'm purposely choosing some of these thoughts because I know a lot of us started out with these thoughts and some of us still have them.
Speaker 1:Or perhaps you have thoughts like disability makes you unique, or thoughts like, oh, people are whole and complete. And actually this is a thought that I work with a lot of my clients on, because they'll find themselves trying to fix their children, and not just their disabled children. And when we relate to people as whole and complete, recognize they're not broken, it really changes our relationship to them. But let's not go down that little rabbit hole right now. Let's just go back to looking at our own relationships. So if you compare your before, I'm assuming that there was a before, that there was a time, distinctly, where you became a mother to a disabled child. Therefore, welcome to a new world. And if you look at your before and your after, or where you are now, my guess is that you see an evolution.
Speaker 1:I think back to the early days of my son's diagnosis. I mean it was a while ago now, it was like 12 years ago. I was so unfamiliar and distant from the concept of disability that I didn't even think to use that label or I can't recall thinking. But then I needed ways to describe my child, the people who had and met him, and I remember experimenting and saying things like, well, he's differently abled, or finding other creative ways of saying that he was different, which, yes, it does expose that I didn't have a relationship with disability that I wanted, as I wanted my son to be disabled or didn't want him to be disabled, and so we're winding that tape. It's very clear that I'd have different relationship with disability than I do now.
Speaker 1:And again, I'm sharing all of this transparently because I know many of you are evolving as well, meaning to say that either where you were, you look back and you're like, wow, I'm really ashamed of that, or you might even be ashamed of where you are now, and that's okay. I mean not that you're ashamed of it, I don't think you should be ashamed of it but it's okay, if you're honest with yourself, that you have things that you don't want to be true in terms of what you're thinking or believing, and I think this honesty is the first step in being able to change this relationship. You know, as I mentioned, you know the conversation that I had with my husband about the things that we can remember from our childhood. We have a lot to unlearn, a lot, I think, and I think it's kind of fun to actually reflect on how I describe my son now, and it's actually kind of fun because I usually say he's disabled.
Speaker 1:I will sometimes say he's medically complex or has special needs, and or I mean that's just a longer. To me is a lot of words. There's a variety of ways that I describe him, but no matter what particular words I'm using, I kind of feel like I'm name dropping about, like a famous person who everybody wants to know, and I feel like a little special, like, oh, I get to be, like close to him, like that kid who is so profound and a little ray of light and so complex, so, so complex and I don't know. It's interesting. I think I love that. I feel this pride of sharing who he is and that that I get to be his mother.
Speaker 1:But the point here is that relationships evolve and shame will not grow. Relationship, being honest with yourself and honest with your community will help you explore and develop new beliefs, where you see space for new beliefs, and I think this is where, when we associate with people who have different beliefs than we do, this is a wonderful way of expanding our relationships, where we thoughtfully consider what we might be missing, what may be working or not working in our own relationships, and I feel like you know this is another win for emphasizing community and the value of community. Okay, let's turn to the next concept that I want to bring into this conversation, and I think it's I mean, it's equally important relationships, but it's a big one. So the concept we're going to be focusing on here is context. Somebody said that context is everything. We cannot throw context out when we're talking about language. Language is so context dependent the English language I can't speak for others, but I think that's probably the case. So let's define. What do I mean by context? What am I talking about here?
Speaker 1:Context is the word that I use to describe the lens at which we're looking through. It's like the filter, it's how something fits inside of a bigger picture. One of the best examples, a visual example, is imagine if you were wearing a pair of sunglasses, and imagine if those sunglasses had green lenses. Everything that you look at would have a green tint, and that would be the reality that you would be experiencing. It wouldn't be right or wrong, it would just be what you are experiencing. And if you were to change the context or, in this example, remove the sunglasses, your experience would dramatically shift. So that's what I mean by context the lens at which we're looking, and for most of us, the lens that we've developed in this area has been over our whole lifetime, and so, as I was talking about you know, talking about relationships it's evolved over a whole lifetime and it'll probably continue to evolve. So our life experience informs this context.
Speaker 1:And here's the interesting part so much of context of our context that we're experiencing and living in is subconscious, like we're not consciously thinking that we're using anyone lens at the time that we are using it. It's so subconscious. And coaching is a tool that brings some of those subconscious ways of your brainworking and brings them to conscious level. So then we can begin to work with them, because when something's subconscious like it's literally not our awareness we can't do much. So it kind of brings it to our consciousness where we can evaluate it and we can make choices that we like.
Speaker 1:So giving an example of context that's unrelated to the topic we're talking about today, but just to give an example, would be a context of scarcity. Another way of saying it would be of not having enough. If we're looking through the lens of I don't have enough, we will see not enough everywhere. We won't realize this, but we'll just be living that experience. So if you're operating in a scarcity context, you're gonna look out when someone says, hey, can you meet me for a walk at five o'clock? Nope, I don't have enough time. If someone says, hey, oh my gosh, there's this $40 thing that changed my life and you should definitely buy it too and it'll change your life, even if you want it, you're gonna say nope, I don't have enough money. But it doesn't necessarily mean it's true. I know right, you're like wait, oh, but it feels true. I know that's how real context feels.
Speaker 1:So context is the reason that we can't isolate terms and proclaim them as good or bad or right or wrong or harmful in and of themselves. It matters how they're being used. It matters the context around them, and people use the very same words with very different contexts. So you can take words and you can use them in the way that I would say yeah, it's harmful, it's mean I would even, maybe even evil, but it doesn't necessarily mean that the word itself is the problem. Remember when I spoke earlier about like this is a heart issue.
Speaker 1:This is exposing our cultures again dysfunctional relationship with people who are disabled and I do think it's important to acknowledge the hurt and harm around how all of these words that I had mentioned earlier in the episode have been used, and I mean I didn't give a conclusive list, like there are many words that I didn't mention that are really considered to be bad words at this point in our community but not every community and actually it was just last week that my oldest son came home like really upset, like he was going on and on about some of the things that he was observing from his peers at school and he was really, really disturbed by him and he shared a couple things with me, but one of the things he shared was like, yeah, mom, people are using the word autism as like a slur. They're saying like, oh, my gosh, you're so autistic. And even hearing that and saying the story like, oh, it feels very yucky to me, it feels upsetting, and so of course, he and I talked about it a little bit, about you know how we handle that or how he's handling that more specifically, but one I think I feel so proud that he sees this that he had different conversations in his childhood than I had, so that's a win right, but it also exposes that the other teens out there are not having this conversation and therefore I think that, again, this is where we get to be advocates for all of our kids and their value and on how to talk about them and us in ways that is signifying the value that they have as you and beans and the needs that we have. Okay, now let's talk about context shift. So one of the first things in working with context is we want to identify the context we're in, and I think the context I see most prevalent in this particular conversation in terms of, like the term, confusion.
Speaker 1:What do I call myself, what do I call them, what's right, what's wrong Is a right wrong context, but what I've seen an adoption of is we do this, we don't do that, and I just think it's a little bit more complex than that, because I think if we start to say, if anyone community says this is the right and wrong language, then I think it implies that everything else besides that and everybody else's experience is wrong. And I think the likelihood that we're going to find consensus, meaning that everybody in the world agrees what's right and wrong about language, is quite low. And why is? Because we all have a very different relationship to disability, and that's okay. I don't think we all want to have the exact same relationship. No, I know some of us do want to change it. So I'm not saying that, and we do want to change how society relates to disability, but I don't think we all want the exact same belief. It's just so complex. If you interview people of any group, they're going to have different preferences, and I think that's okay.
Speaker 1:I think an example of this is that some people, in speaking about their disability, are so empowered by it that they would say I would never trade my disability for anything. If I could choose over again, I would choose this. I don't want to be cured or healed or whatever. This is how I want to be, Yay. And other people would say if I could take this away, I would in a second. And I fall into this category. If I could take the pain and hardship that my son has had to endure and will have to endure his whole life, I would in a second. And this is an example of neither one is right or wrong at all. You see how it's like oh, we can't say one's right and the other is wrong that it's context dependent. Now, this conversation is not over. I don't think. I think it's going to be a lifelong conversation and maybe things that are really empowering now won't be in the future and vice versa.
Speaker 1:So I hope that this has been thought provoking for you. I know that I have really, really benefited from having many different conversations with people from all different groups, ages, identities and all of that, and so I think that, as moms, we get to inform our children to a high degree, and how we relate to something will likely be how our children, by default, relate to this, and I know that I've spoken to some of you that haven't yet arrived at a place where accepting that your child is disabled feels empowering, and I know you're working on it, and what I want to leave you with is that you're where you're supposed to be, that you're not wrong for being honest, and that you can offer yourself grace and compassion, exactly where you are, without changing anything. Okay, thank you for joining me along. If you do want to have more of a back and forth conversation and you haven't already joined the private Facebook community group, I welcome you there. I'd love to hear your thoughts and we'll see you on the next episode.