Embracing Identity and Community, Emma Farley's Story

In this episode, my guest Emma shares their personal experiences and reflections on living with a disability. They discuss identity, community, and the evolution of their acceptance of their disabled body from childhood. The conversation also delves into the challenges faced with societal perceptions, internalised ableism, and the impact of neurodivergence on their life. Additionally, they touch on the importance of language, mental health, and the role of the social model in empowering disabled people. Stay tuned for the second part of this insightful discussion!

00:00 Introduction: What Does Disability Mean to You?

00:35 Growing Up with a Disability

02:17 Building Connections in the Disability Community

05:35 Confidence in Discussing Disability

07:25 Mental Health and Neurodivergence

09:25 Medical vs. Social Model of Disability

14:21 Impact of Political Climate on Disability Perception

18:53 Language and Disability

23:38 Personal Reflections on Disability

25:58 Conclusion and Upcoming Episode

Transcript

[00:00:00] What does disability mean to you? Um, well, it's, it's my identity. Um, disability is, um, a community that I'm part of. It's a shared history. It is, um, it's a shared knowledge and it's. Yeah, yeah, it's it's a it's an identity and it's a community and it's history and knowledge. Yeah, those are good. Yeah And have you always kind of accepted the fact that you're disabled you're part of that community?
Well, I've always I was born with my disability. So yeah, I that's this is the only Body, I've ever known is a disabled one. So yeah, I mean because that's that's That's who I am. Um, that's part of who I am and [00:01:00] that's always been my normal. Um, I think where the community came into it was maybe like, as I, you know, uh, was in elementary school probably.
Um, yeah, that's when that sort of, I started to. Be introduced to the disability community through classmates of mine that were disabled. And then I started going to summer camps for kids with muscular dystrophy. What I have. Um, and that was where that part of disability came into my life. Um, but yeah, I've always accepted it.
I, I, I was raised to believe that, you know, being disabled is as normal and natural as having as me having like blue eyes and and brown hair. And, um. Yeah. I think where I had any conflict was just, um, the, the messages that I [00:02:00] receive would cause low self esteem, but it never caused me. To not want to be part of the community.
It just made me feel like bad about myself or like bad about maybe the way I appeared or the way I functioned. Do you think that gave you a better understanding of other disabled people? Like, I think one thing I find really, I was talking about this with my therapist the other day, like I feel like connection with other people that were disabled because although I don't know what their disability is like to live with, you, you feel a sense of like going to help that person and be, be there for them, just listening.
Yeah, because there's a shared understanding, you know, um, and there's that solidarity and I, I, I always was, um, wanting to do that. I, I was since going as far back as I can remember. Um, I would always like, find the disabled classmate of mine [00:03:00] and. You know, form, form a friendship or some sort of connection with them.
And, um, yeah, and I think that's because it, it wasn't just me getting something out of it. I, I felt like, or it wasn't just me giving something. I got something out of it too. I felt more at ease, more comfortable. Um, you know, because. Even though I was, as a kid, I was comfortable, even if I was the only disabled person in the room, it made me feel a lot, it improved when there was somebody from the community, like, also there.
And I think, I don't know how you feel, but you can be, like, surrounded by people but feel still isolated and still feel alone even if you're in that presence of, like, loads of people around you to support you. Yeah. Um, and well, do you mean, um, when you're in the presence of like non disabled people? Yeah, just non [00:04:00] disabled people or even disabled people who have a shared experience with you, but also don't necessarily know the ins and outs of your own disability.
So like, I guess just being surrounded by a group of people, you might not be alone, but you can still feel like misunderstood and just like your disability is the thing that they see and not you as a person, if that makes sense. Yeah, I think, um, I, yeah, definitely. I, I think I started, I, as you were describing that, I was thinking of, there were definitely times at like summer camp where, you know, everybody else was disabled too, but you know, there, I think it was mostly just like middle school when we were pulling and like not kidding along, but like, um, no, it did, it could feel lonely sometimes.
And, um, yeah, I think, I think you're not gonna, it's not easy to connect with others. Like, I mean, [00:05:00] for some people, they find it easy, but you, you're not going to establish a connection with everybody and there's going to be those moments when, yeah, you don't, it's just not, it's just not hitting and it does feel very lonely, but I think, yeah, I, I, I, I try to in those moments, um, You know, just remember that it happens, it happens, and it doesn't mean that I'm doing anything wrong, or maybe I am, I'm not sure.
Sometimes I probably am. You seem like someone who's quite confident in talking about the fact that they're disabled and the experiences you've been through. Has it always been that way? Have you always had that kind of desire to want to talk about the things you've been through? Yeah, I mean, I think my mom later, uh, uh, my mom's a nurse and she sort of laid this foundation of just [00:06:00] communicating very matter of factly.
And so I sort of took that on. Like, she was very chill about it. So I was, and I think that really kind of, um, you know, having her set that example, uh, laid such a healthy foundation for me to be able to talk about it. And, um, you Um, you know, and it started in doctor's office, just, like, sort of being able to comfortably talk and then talking to my teachers and my classmates.
And so it sort of evolved, um, in, in, in just the right way. Um, but, yeah, I've always been comfortable because. I, you know, there's nothing, I never felt like I had anything to be ashamed of, um, but I also think my, my disability, my, my type of muscular dystrophy, since it was slow, it's slowly progressive. So, I don't think I was ever faced with any [00:07:00] thing too harsh for me to be able to.
Handle I, you know, I think maybe I wouldn't have had such a comfortable or easy time. If my circumstances had been different. I'm not sure, but I think I think everything was sort of comfortable at the time that, you know, however, I was functioning, it felt comfortable at that time to talk about. And before we start recording, we're talking about mental health and how, like, important that aspect of life can be and kind of the support that you, you need and stuff.
As you've got older, you, you, you've spoken to me about the fact that you're neurodivergent as well. How has that and your mental health impacted on things? Yeah, well, I think because I, I wasn't diagnosed with, you know, till very later in my life. Um, and so it's sort of, and also I have dyscalculia as well, [00:08:00] which is like a dyslexia, but with like numbers, um, and having that just sort of.
Was sort of like a relief. It was like, Oh, all these things that happen, like make so much sense now. And I, it took a lot of pressure off because I, I mean, I didn't think anything was wrong with me, but I knew that. Like, well, the dyscalculia, like, that definitely, no, I was definitely self conscious about that because I would, like, fail every math class.
But, um, no, I mean, the ADHD, I just, I, I felt kind of like, why can't I get my, like, behavior in order? And then, um, It's just because I didn't have the, the tools that I needed, and it took a lot of pressure off. It took a lot of that, um, that negative internal dialogue that I had, I built up over the years. Um, so, yeah, it was a relief and I was happy to talk about it [00:09:00] because I was also at a point in my life just, um, developmentally, you know, and I was mature enough to.
You know, be, be okay with it and also having a background with muscular dystrophy as kind of like ADHD is like nothing like compared to like, you know, so I'm gonna be uncomfortable about anything. It's gonna be muscular dystrophy stuff. Not ADHD. And how do you kind of, obviously with the medical model says that us as disabled people need to be kind of cured and treated to fit into the world around us.
Obviously with your mum being a nurse, how did, how much did that influence your kind of understanding of disability compared to like the social model that kind of empowers disabled people to say that we're not the problem? So I actually was Was even though my mom is a nurse, um, and I think nurses are really, they're different than other medical professionals.
They're, um, they're very nurturing and very, [00:10:00] um, the good ones are anyway. But, um, I was actually pretty much raised on the, on the social model. I that are, uh, uh. Something like that, um, because my parents, neither of them, nobody in my family, not my, my, my parents, my siblings, um, they never, ever, uh, communicated that I, you know, any of that cure stuff.
That was not something that I heard at home from anybody. And that's, I know, that's not the way they felt. I, I think, um, my mom is really, really smart. Like I said, I think she kind of saw it as, You know, let's just get him what she needs. And like, we're good. I mean, cause also her experiences like she had, she had been, she had worked at Sloan Kettering, which is a cancer hospital in New York.
She had worked with, um, uh, in the eighties, uh, babies who had AIDS. I mean, she had seen people who [00:11:00] are need, you know. Medications and treatment and to get better. And that's not how she saw me. I wasn't sick. You know, I didn't have something that I needed to, um, that was doing me any harm. It was just the way I functioned and I think even with treatments, the best treatments in the world, like, it's still about finding that that support to still live your life beyond the treatment.
Yeah. Yeah. Um, it's, yeah.
Well, that's the thing about being, it's like any other part of your identity. It's like, you know, I also have, I have like physical needs as a female, but I also have like emotional, social, um, you know, there's, it's a, it's a whole experience and there's different types of needs for, you know, you're talking physical, social, emotional, um, there's [00:12:00] different support and.
That's because as humans, we're not just, it's not, um, it's a, it's a whole thing. It's a whole experience made up of lots of different little pieces and aspects to it. And something I've kind of, I've come to, to learn about and kind of see in myself is that disability is not stagnant. It's like, you can become disabled at any point in your life.
Like, I've been disabled for pretty much my whole life. Um, so it feels like my whole life, even though it's not been. Um, and I think like. People who I've met who've become disabled or who are chronically ill now, like they weren't, they were non disabled and they've acquired their disability and like just being open and being receptive to those people and stuff and letting them know that you're there if they need to talk and need to like chat and just even just to vent because sometimes it can be hard like coming to terms with the [00:13:00] fact that you've gone from being non disabled to having a disability.
Well, I think what individuals, depending on what kind of disability they acquire and when, but I think. I, I think a, a real struggle is also, um, having that privilege of being take a lot of privilege taken away and a lot of, um, you know, because they, they, you know, disabled people are seen as inferior.
That's just that's unfortunately the reality that we live in. And, um, I think if somebody acquires a disability, they're suddenly put in that spot and it's probably very a true shock to their system and. That there's a, there's a lot of just grief and to suddenly be seen as that is, is I can't imagine. Um, you know, and there's lots [00:14:00] of, um, you know, real eye opening experiences that that, you know, that come with that you're seeing a side to, you're seeing a world that you never was always there, but, you know, you never, um, paid attention to and now you're part of it.
And it's, that's a lot. And. Obviously you're based in America. How in the last month and a half has, has things changed in terms of the understanding of disability and the shift from, as you said earlier, like viewing disabled people as in inferior in quotes and kind of being that, that less than because they are disabled.
I'm just recalling the one incident where, um, President Trump talked about, Blind people being air traffic controllers and stuff like that and oh, he threw all disabilities under the bus like all of it You should hear the whole thing and [00:15:00] How does that influence or how has it influenced? The people that you interact with and even just on social media or in in the street?
Well, I live in Brooklyn, New York. So I am good. Like I don't run into a lot of conservative People, uh, especially in my neighborhood. It's very it's very like liberal But no, well, I I mean I know I haven't interacted with With a lot since the Trump started his term, but, um, no, I have, I have family that, like, definitely voted for Trump and like, um, yeah, but it's, I think, I think really that all of that sort of.
Rhetoric and that, that sort of behavior, it already existed. I had already [00:16:00] seen examples just like that of other people doing it. Not the president, but like, you know, um, people, people do that stuff. It's really offensive. And I think, um, I think what
it's like, I don't like, I'm not happy about, like, what's going on in my country, but I, I also feel like America really, at least privileged America, which is a lot of America. Um, it's kinda a wake up call about what's always been occurring that they've shut their eyes to. And now, you know, our president is saying and doing these things and it's like, yeah, like welcome to the party.
Like let's take care of this. Um, I think there's. I hope that there's opportunity, um, with, with Trump's being just so unhinged and out [00:17:00] of, like, out of pocket, uh, and offensive and, um, oppressive, but I think, I hope that, I hope it'll kind of open people's eyes because this stuff has already existed and people have been, it's not just disabled people.
It's like, it's every marginalized group has been fighting and it's like, you know, it's, it's reached a boiling point. I saw. I saw a clip on TikTok of a podcast interview, I can't remember her name, but she's talking to someone who was quite, like, present on social media, especially TikTok, in the lead up to the election, and he's saying that we shouldn't use the R word, and her comeback was, it's free speech, I'm allowed to say whatever I want, and I reacted to that, and I stitched it, and the amount of hate I got of people calling me the R word on social media, [00:18:00] And then I turned off the comments because I was like, I need to protect myself here because this is not, I, this is having an impact on me and someone from like South Africa commented saying on another one of my posts saying, why'd you turn off the comments?
And then he started direct messaging me saying I was narcissistic and how I didn't value free speech because I'm stopping other people from having free speech. That's not devaluing. That's, yeah, that's like, it's sort of like, you know, if somebody's yelling at you on the phone, like, I would like you hang up, like, it's the same thing, you know, click, nope.
And I looked at his social media and it said that he was like a drummer for a, uh, like a Christian band. And I'm like, how are you able to, on one hand, talk about Christianity and, and stuff, but then also someone who's protected themselves from online abuse? It's, it's interesting how someone that wants to help change the conversation who, [00:19:00] I don't know if he has a disability or not, but, or a neurodiversity or, or he's neurodivergent, sorry, but like, someone wanting to be an ally and want to change the conversation and then being shut down by someone who's just saying no, let's, let's carry on this, this negative rhetoric, how does that make you feel as a disabled person hearing those comments and hearing that language around like, The all word, I mean, it's see, I grew up.
Um, that was like a, um, when I was like a teenager, that was in a middle school. That was 1 of the popular words. That was. Use and we didn't, um, it culturally, we weren't there yet where we were really kind of understanding. Like, I, like, I used it in middle school. I'll admit it. It was really bad. Um, and, you know, but, but that was coming from complete.[00:20:00] 
Not complete, but it was coming from more ignorance where it was, but this is like, people really understand why that's because now that knowledge is there. We do understand why it's offensive. We do understand why we don't say that anymore. It's not acceptable the way it was in like 2004, like, you know, um, And so it's almost, it's more disturbing to me because it's, there's that, um, there's that awareness that is there that I know that I did not have in middle school.
I had it a little bit because I knew what it meant, but like, not I, yeah, um, it wasn't. The way that people are saying it now and throwing it around, it's because they know it's so harmful. That's why they're doing it. I think as well, like I did a talk recently where I was talking about language around disability.
And I said that [00:21:00] to say disability isn't a dirty word. And then we went on to like talking about someone who hasn't got a disability. How do you call them? And they were like able bodied and I'm like, Do you have a problem with that too? Do you not like it either? Bo. Yeah, I think, I think it, I hate it. I'm so glad.
I think it imp for me, it implies that there's an able way to be, and like a, a normal in quotes, kind of appearance. Yeah, no, I agree. I, I'm like, it's also like I'm able-bodied, my heart is beating. I am functioning. Like a person who's not able bodied is like dead. I'm pretty sure, like, I don't know. And it depends on the situation.
Am I, am I able on the soccer field now, but am I right here talking to you? Yes. Yeah. And with the right adaptations, anyone is able to do [00:22:00] anything. I think it's very light. And I was talking about this and they, they, some of the people couldn't necessarily understand why I was saying that it's not.
preferable to use that and kind of use non disabled. And they were like, well, I feel uncomfortable saying non disabled. And I'm like, the thing about language is also that it's not going to please everyone. You're not going to get it right all the time, but the fact that you're willing to try and to, to learn and to understand that for some people.
And like, I know some disabled people who don't like identifying as disabled, like they have a disability, but they wouldn't identify themselves that in that way. So it's, it's about. Recognizing that it is complex and you're not going to understand it all, but you can do something to try and understand and to help people.
Yeah, I think the people that I've met who don't want to be, I don't [00:23:00] want to identify as disabled. Typically, I've found that those are people really struggling with internalized ableism and, um, are really struggling with, with, um, yeah, some, some, some really, uh, harmful ideas that, that You know, they unfortunately took on, um, I would be interested to meet somebody who it's not coming from internalize ableism, but it's just just a belief that they have.
I haven't come across that yet though. Have you know, I'm just thinking about my own experiences. When you're talking, I was like, when I was like 10, 11, 12, I would have done anything to be non disabled. I would have done, I would have, I would have probably given a kidney away, done anything just to be non disabled.
Yeah. And I remember Even like six years old going after my [00:24:00] for my second surgery. He said you're from Brooklyn. I would dream about being spider man. Oh I'd go and go in for my MRIs and then they'd like normally when I was younger They'd like knock me out because I would fidget and I'd move around and stuff.
Yeah They wouldn't like knock me up physically. No, I know They'd like put you to like in a sleep sort of state. Yeah, and I would wait For the moment, the machine just suddenly broke, imploded, and I'd like absorb all this radiation, and it's not until I've become an adult I've realized that MRI scanners don't produce any radiation, it's all magnets and stuff.
So I was like, kind of wishing to the impossible, but I was like praying that I'd like get the superhuman powers and then finally my disability would be a positive because people would see me and go, Oh, he's a, he's cool. He's got, he's got superpowers like all this stuff and Like as I've got older, I've realized that I don't necessarily [00:25:00] need to change who I am.
Yes, there's things that I struggle with and I get annoyed with and come into terms with recently the fact that I might be neurodivergent and stuff like that. But like these little bits that kind of are who I am and I wouldn't want to talk about my disability in the same way. And I'd want to distinguish me from my disability.
But now. Like someone asked me, do you have any hobbies? I was like, talk about disability, that hobby. Like it's part of who I am. It's like everything that I believe in and I love about myself. And yeah, I still hate myself some days and wish I wasn't disabled, but that's liberating to kind of feel that way, I guess.
And also that's very normal. I think, you know, like there are some days, yeah. I wish I wasn't disabled either. There's also a lot of days where I'm like, I don't want to be a woman like happens. Um, I think that's because. Thanks so much for tuning in to [00:26:00] listen to this episode of the podcast. There's a second part to this, this chat that I had with Emma.
It's coming out in about a week or so. Um, so please stay tuned for that. I hope you've enjoyed it and please comment, like, and share this with a friend.
What does disability mean to you? Um, well, it's, it's my identity. Um, disability is, um, a community that I'm part of. It's a shared history. It is, um, it's a shared knowledge and it's. Yeah, yeah, it's it's a it's an identity and it's a community and it's history and knowledge. Yeah, those are good. Yeah And have you always kind of accepted the fact that you're disabled you're part of that community?[00:27:00] 
Well, I've always I was born with my disability. So yeah, I that's this is the only Body, I've ever known is a disabled one. So yeah, I mean because that's that's That's who I am. Um, that's part of who I am and that's always been my normal. Um, I think where the community came into it was maybe like, as I, you know, uh, was in elementary school probably.
Um, yeah, that's when that sort of, I started to. Be introduced to the disability community through classmates of mine that were disabled. And then I started going to summer camps for kids with muscular dystrophy. What I have. Um, and that was where that part of disability came into my life. Um, but yeah, I've always accepted it.
I, I, I was raised to believe that, you [00:28:00] know, being disabled is as normal and natural as having as me having like blue eyes and and brown hair. And, um. Yeah. I think where I had any conflict was just, um, the, the messages that I receive would cause low self esteem, but it never caused me. To not want to be part of the community.
It just made me feel like bad about myself or like bad about maybe the way I appeared or the way I functioned. Do you think that gave you a better understanding of other disabled people? Like, I think one thing I find really, I was talking about this with my therapist the other day, like I feel like connection with other people that were disabled because although I don't know what their disability is like to live with, you, you feel a sense of like going to help that person and be, be there for them, just listening.
Yeah, because there's a shared understanding, you [00:29:00] know, um, and there's that solidarity and I, I, I always was, um, wanting to do that. I, I was since going as far back as I can remember. Um, I would always like, find the disabled classmate of mine and. You know, form, form a friendship or some sort of connection with them.
And, um, yeah, and I think that's because it, it wasn't just me getting something out of it. I, I felt like, or it wasn't just me giving something. I got something out of it too. I felt more at ease, more comfortable. Um, you know, because. Even though I was, as a kid, I was comfortable, even if I was the only disabled person in the room, it made me feel a lot, it improved when there was somebody from the community, like, also there.
And I think, I don't know how you feel, but you can be, like, [00:30:00] surrounded by people but feel still isolated and still feel alone even if you're in that presence of, like, loads of people around you to support you. Yeah. Um, and well, do you mean, um, when you're in the presence of like non disabled people? Yeah, just non disabled people or even disabled people who have a shared experience with you, but also don't necessarily know the ins and outs of your own disability.
So like, I guess just being surrounded by a group of people, you might not be alone, but you can still feel like misunderstood and just like your disability is the thing that they see and not you as a person, if that makes sense. Yeah, I think, um, I, yeah, definitely. I, I think I started, I, as you were describing that, I was thinking of, there were definitely times at like summer camp where, you know, everybody else was disabled too, but you know, there, I think it was mostly just like middle school when we were [00:31:00] pulling and like not kidding along, but like, um, no, it did, it could feel lonely sometimes.
And, um, yeah, I think, I think you're not gonna, it's not easy to connect with others. Like, I mean, for some people, they find it easy, but you, you're not going to establish a connection with everybody and there's going to be those moments when, yeah, you don't, it's just not, it's just not hitting and it does feel very lonely, but I think, yeah, I, I, I, I try to in those moments, um, You know, just remember that it happens, it happens, and it doesn't mean that I'm doing anything wrong, or maybe I am, I'm not sure.
Sometimes I probably am. You seem like someone who's quite confident in talking about the fact that they're disabled and the experiences you've been through. Has it always been that way? [00:32:00] Have you always had that kind of desire to want to talk about the things you've been through? Yeah, I mean, I think my mom later, uh, uh, my mom's a nurse and she sort of laid this foundation of just communicating very matter of factly.
And so I sort of took that on. Like, she was very chill about it. So I was, and I think that really kind of, um, you know, having her set that example, uh, laid such a healthy foundation for me to be able to talk about it. And, um, you Um, you know, and it started in doctor's office, just, like, sort of being able to comfortably talk and then talking to my teachers and my classmates.
And so it sort of evolved, um, in, in, in just the right way. Um, but, yeah, I've always been comfortable because. I, you know, there's nothing, I never felt like I had anything [00:33:00] to be ashamed of, um, but I also think my, my disability, my, my type of muscular dystrophy, since it was slow, it's slowly progressive. So, I don't think I was ever faced with any thing too harsh for me to be able to.
Handle I, you know, I think maybe I wouldn't have had such a comfortable or easy time. If my circumstances had been different. I'm not sure, but I think I think everything was sort of comfortable at the time that, you know, however, I was functioning, it felt comfortable at that time to talk about. And before we start recording, we're talking about mental health and how, like, important that aspect of life can be and kind of the support that you, you need and stuff.
As you've got older, you, you, you've spoken to me about the fact that you're neurodivergent as well. How has that and your mental health [00:34:00] impacted on things? Yeah, well, I think because I, I wasn't diagnosed with, you know, till very later in my life. Um, and so it's sort of, and also I have dyscalculia as well, which is like a dyslexia, but with like numbers, um, and having that just sort of.
Was sort of like a relief. It was like, Oh, all these things that happen, like make so much sense now. And I, it took a lot of pressure off because I, I mean, I didn't think anything was wrong with me, but I knew that. Like, well, the dyscalculia, like, that definitely, no, I was definitely self conscious about that because I would, like, fail every math class.
But, um, no, I mean, the ADHD, I just, I, I felt kind of like, why can't I get my, like, behavior in order? And then, um, [00:35:00] It's just because I didn't have the, the tools that I needed, and it took a lot of pressure off. It took a lot of that, um, that negative internal dialogue that I had, I built up over the years. Um, so, yeah, it was a relief and I was happy to talk about it because I was also at a point in my life just, um, developmentally, you know, and I was mature enough to.
You know, be, be okay with it and also having a background with muscular dystrophy as kind of like ADHD is like nothing like compared to like, you know, so I'm gonna be uncomfortable about anything. It's gonna be muscular dystrophy stuff. Not ADHD. And how do you kind of, obviously with the medical model says that us as disabled people need to be kind of cured and treated to fit into the world around us.
Obviously with your mum being a nurse, how did, how much did that influence your kind of understanding of [00:36:00] disability compared to like the social model that kind of empowers disabled people to say that we're not the problem? So I actually was Was even though my mom is a nurse, um, and I think nurses are really, they're different than other medical professionals.
They're, um, they're very nurturing and very, um, the good ones are anyway. But, um, I was actually pretty much raised on the, on the social model. I that are, uh, uh. Something like that, um, because my parents, neither of them, nobody in my family, not my, my, my parents, my siblings, um, they never, ever, uh, communicated that I, you know, any of that cure stuff.
That was not something that I heard at home from anybody. And that's, I know, that's not the way they felt. I, I think, um, my mom is really, really smart. Like I said, I think she kind of saw it as, You know, let's just get him what she needs. And like, we're good. I mean, [00:37:00] cause also her experiences like she had, she had been, she had worked at Sloan Kettering, which is a cancer hospital in New York.
She had worked with, um, uh, in the eighties, uh, babies who had AIDS. I mean, she had seen people who are need, you know. Medications and treatment and to get better. And that's not how she saw me. I wasn't sick. You know, I didn't have something that I needed to, um, that was doing me any harm. It was just the way I functioned and I think even with treatments, the best treatments in the world, like, it's still about finding that that support to still live your life beyond the treatment.
Yeah. Yeah. Um, it's, yeah.
Well, that's the thing about being, it's like any other part of your identity. It's like, you know, I also have, I have like physical needs as a [00:38:00] female, but I also have like emotional, social, um, you know, there's, it's a, it's a whole experience and there's different types of needs for, you know, you're talking physical, social, emotional, um, there's different support and.
That's because as humans, we're not just, it's not, um, it's a, it's a whole thing. It's a whole experience made up of lots of different little pieces and aspects to it. And something I've kind of, I've come to, to learn about and kind of see in myself is that disability is not stagnant. It's like, you can become disabled at any point in your life.
Like, I've been disabled for pretty much my whole life. Um, so it feels like my whole life, even though it's not been. Um, and I think like. People who I've met who've become disabled or who are chronically ill now, [00:39:00] like they weren't, they were non disabled and they've acquired their disability and like just being open and being receptive to those people and stuff and letting them know that you're there if they need to talk and need to like chat and just even just to vent because sometimes it can be hard like coming to terms with the fact that you've gone from being non disabled to having a disability.
Well, I think what individuals, depending on what kind of disability they acquire and when, but I think. I, I think a, a real struggle is also, um, having that privilege of being take a lot of privilege taken away and a lot of, um, you know, because they, they, you know, disabled people are seen as inferior.
That's just that's unfortunately the reality that we live in. And, um, I think if somebody acquires a disability, they're suddenly put in that spot and [00:40:00] it's probably very a true shock to their system and. That there's a, there's a lot of just grief and to suddenly be seen as that is, is I can't imagine. Um, you know, and there's lots of, um, you know, real eye opening experiences that that, you know, that come with that you're seeing a side to, you're seeing a world that you never was always there, but, you know, you never, um, paid attention to and now you're part of it.
And it's, that's a lot. And. Obviously you're based in America. How in the last month and a half has, has things changed in terms of the understanding of disability and the shift from, as you said earlier, like viewing disabled people as in inferior in quotes and kind of being that, that less than because they are disabled.
I'm just [00:41:00] recalling the one incident where, um, President Trump talked about, Blind people being air traffic controllers and stuff like that and oh, he threw all disabilities under the bus like all of it You should hear the whole thing and How does that influence or how has it influenced? The people that you interact with and even just on social media or in in the street?
Well, I live in Brooklyn, New York. So I am good. Like I don't run into a lot of conservative People, uh, especially in my neighborhood. It's very it's very like liberal But no, well, I I mean I know I haven't interacted with With a lot since the Trump started his term, but, um, no, I have, I have family that, like, definitely voted for Trump and like, [00:42:00] um, yeah, but it's, I think, I think really that all of that sort of.
Rhetoric and that, that sort of behavior, it already existed. I had already seen examples just like that of other people doing it. Not the president, but like, you know, um, people, people do that stuff. It's really offensive. And I think, um, I think what
it's like, I don't like, I'm not happy about, like, what's going on in my country, but I, I also feel like America really, at least privileged America, which is a lot of America. Um, it's kinda a wake up call about what's always been occurring that they've shut their eyes to. And now, you know, our president [00:43:00] is saying and doing these things and it's like, yeah, like welcome to the party.
Like let's take care of this. Um, I think there's. I hope that there's opportunity, um, with, with Trump's being just so unhinged and out of, like, out of pocket, uh, and offensive and, um, oppressive, but I think, I hope that, I hope it'll kind of open people's eyes because this stuff has already existed and people have been, it's not just disabled people.
It's like, it's every marginalized group has been fighting and it's like, you know, it's, it's reached a boiling point. I saw. I saw a clip on TikTok of a podcast interview, I can't remember her name, but she's talking to someone who was quite, like, present on social media, especially TikTok, in the lead up to the [00:44:00] election, and he's saying that we shouldn't use the R word, and her comeback was, it's free speech, I'm allowed to say whatever I want, and I reacted to that, and I stitched it, and the amount of hate I got of people calling me the R word on social media, And then I turned off the comments because I was like, I need to protect myself here because this is not, I, this is having an impact on me and someone from like South Africa commented saying on another one of my posts saying, why'd you turn off the comments?
And then he started direct messaging me saying I was narcissistic and how I didn't value free speech because I'm stopping other people from having free speech. That's not devaluing. That's, yeah, that's like, it's sort of like, you know, if somebody's yelling at you on the phone, like, I would like you hang up, like, it's the same thing, you know, click, nope.
And I looked at his social media and it said that he was like a drummer for a, uh, like a Christian band. And I'm like, how are [00:45:00] you able to, on one hand, talk about Christianity and, and stuff, but then also someone who's protected themselves from online abuse? It's, it's interesting how someone that wants to help change the conversation who, I don't know if he has a disability or not, but, or a neurodiversity or, or he's neurodivergent, sorry, but like, someone wanting to be an ally and want to change the conversation and then being shut down by someone who's just saying no, let's, let's carry on this, this negative rhetoric, how does that make you feel as a disabled person hearing those comments and hearing that language around like, The all word, I mean, it's see, I grew up.
Um, that was like a, um, when I was like a teenager, that was in a middle school. That was 1 of the popular words. That was. Use and we didn't, [00:46:00] um, it culturally, we weren't there yet where we were really kind of understanding. Like, I, like, I used it in middle school. I'll admit it. It was really bad. Um, and, you know, but, but that was coming from complete.
Not complete, but it was coming from more ignorance where it was, but this is like, people really understand why that's because now that knowledge is there. We do understand why it's offensive. We do understand why we don't say that anymore. It's not acceptable the way it was in like 2004, like, you know, um, And so it's almost, it's more disturbing to me because it's, there's that, um, there's that awareness that is there that I know that I did not have in middle school.
I had it a little bit because I knew what it meant, but like, not I, yeah, [00:47:00] um, it wasn't. The way that people are saying it now and throwing it around, it's because they know it's so harmful. That's why they're doing it. I think as well, like I did a talk recently where I was talking about language around disability.
And I said that to say disability isn't a dirty word. And then we went on to like talking about someone who hasn't got a disability. How do you call them? And they were like able bodied and I'm like, Do you have a problem with that too? Do you not like it either? Bo. Yeah, I think, I think it, I hate it. I'm so glad.
I think it imp for me, it implies that there's an able way to be, and like a, a normal in quotes, kind of appearance. Yeah, no, I agree. I, I'm like, it's also like I'm able-bodied, my heart is beating. I am functioning. Like a person who's not able bodied [00:48:00] is like dead. I'm pretty sure, like, I don't know. And it depends on the situation.
Am I, am I able on the soccer field now, but am I right here talking to you? Yes. Yeah. And with the right adaptations, anyone is able to do anything. I think it's very light. And I was talking about this and they, they, some of the people couldn't necessarily understand why I was saying that it's not.
preferable to use that and kind of use non disabled. And they were like, well, I feel uncomfortable saying non disabled. And I'm like, the thing about language is also that it's not going to please everyone. You're not going to get it right all the time, but the fact that you're willing to try and to, to learn and to understand that for some people.
And like, I know some disabled people who don't like identifying as disabled, like they have a disability, but they wouldn't identify themselves that in that way. So it's, it's about. Recognizing that it is [00:49:00] complex and you're not going to understand it all, but you can do something to try and understand and to help people.
Yeah, I think the people that I've met who don't want to be, I don't want to identify as disabled. Typically, I've found that those are people really struggling with internalized ableism and, um, are really struggling with, with, um, yeah, some, some, some really, uh, harmful ideas that, that You know, they unfortunately took on, um, I would be interested to meet somebody who it's not coming from internalize ableism, but it's just just a belief that they have.
I haven't come across that yet though. Have you know, I'm just thinking about my own experiences. When you're talking, I was like, when I was like 10, 11, 12, [00:50:00] I would have done anything to be non disabled. I would have done, I would have, I would have probably given a kidney away, done anything just to be non disabled.
Yeah. And I remember Even like six years old going after my for my second surgery. He said you're from Brooklyn. I would dream about being spider man. Oh I'd go and go in for my MRIs and then they'd like normally when I was younger They'd like knock me out because I would fidget and I'd move around and stuff.
Yeah They wouldn't like knock me up physically. No, I know They'd like put you to like in a sleep sort of state. Yeah, and I would wait For the moment, the machine just suddenly broke, imploded, and I'd like absorb all this radiation, and it's not until I've become an adult I've realized that MRI scanners don't produce any radiation, it's all magnets and stuff.
So I was like, kind of wishing to the impossible, but I was like praying that I'd like get the [00:51:00] superhuman powers and then finally my disability would be a positive because people would see me and go, Oh, he's a, he's cool. He's got, he's got superpowers like all this stuff and Like as I've got older, I've realized that I don't necessarily need to change who I am.
Yes, there's things that I struggle with and I get annoyed with and come into terms with recently the fact that I might be neurodivergent and stuff like that. But like these little bits that kind of are who I am and I wouldn't want to talk about my disability in the same way. And I'd want to distinguish me from my disability.
But now. Like someone asked me, do you have any hobbies? I was like, talk about disability, that hobby. Like it's part of who I am. It's like everything that I believe in and I love about myself. And yeah, I still hate myself some days and wish I wasn't disabled, but that's liberating to kind of [00:52:00] feel that way, I guess.
And also that's very normal. I think, you know, like there are some days, yeah. I wish I wasn't disabled either. There's also a lot of days where I'm like, I don't want to be a woman like happens. Um, I think that's because. Thanks so much for tuning in to listen to this episode of the podcast. There's a second part to this, this chat that I had with Emma.
It's coming out in about a week or so. Um, so please stay tuned for that. I hope you've enjoyed it and please comment, like, and share this with a friend.