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Speaker 1: Hey, this is a Bridget and this is Anny, and

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Speaker 1: you're listening the stuff Bomb never told you. Now today

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Speaker 1: we're talking about the idea of quote overcoming disability. This

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Speaker 1: is the phrase I heard quite a bit after the

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Speaker 1: death of Stephen Hawking. A lot of folks were talking

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Speaker 1: about how it was so great that he was able

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Speaker 1: to quote overcome his disability to achieve something great. I

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Speaker 1: kind of couldn't help thinking that this whole idea left

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Speaker 1: a really rotten taste in my mouth. Yeah, it was.

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Speaker 1: It was a heavy sigh. It was a heavy sigh

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Speaker 1: moment for me as well. I'm I'm a very big

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Speaker 1: fan of Stephen Hawking. That's I read one fiction book

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Speaker 1: and one science book. I alternate, and I went through

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Speaker 1: all of his books and usually had to reread them

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Speaker 1: twice because it's danse It's dance. Anyway, That's not what

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Speaker 1: we're talking about specifically today. I mean it kind of

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Speaker 1: is because he is someone who I mean, his disability

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Speaker 1: was a big part of who he was, and he

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Speaker 1: was very vocal about that, and so you know, when

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Speaker 1: you're reading someone's contributions, like he's talked about how he

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Speaker 1: doesn't feel shame around being disabled, and that seems to

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Speaker 1: be something that plays at it as work. I would say, oh, yeah,

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Speaker 1: absolutely absolutely. Um and some numbers three you're here. They

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Speaker 1: were nearly forty million Americans with a disability in representing

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Speaker 1: at twelve point six percent of the civilian non institutionalized

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Speaker 1: population according to the US since this Bureau. But how

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Speaker 1: often do you see that in our media? Um, not

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Speaker 1: that often at all. We actually don't see nuanced depictions

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Speaker 1: of disability in the media really at all. When you

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Speaker 1: see someone who's disabled in a movie or on TV,

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Speaker 1: either A they're so tragic and they hate their lives

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Speaker 1: and you know, nothing good ever happens to them, or

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Speaker 1: be they only kind of exist to make the able

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Speaker 1: bodied person feel good and so you're only really experiencing

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Speaker 1: their situation via an able bodied person. And one of

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Speaker 1: the ways that I I really sort of have a

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Speaker 1: problem with this that it plays out is this idea

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Speaker 1: of quote inspiration porn, where it's these prom prosal favorite

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Speaker 1: where it's these prom posal videos where an able bodied

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Speaker 1: person will ask a disabled person to prom and the

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Speaker 1: subtext is, Oh, that's he's so brave, that's so big

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Speaker 1: of him, Like, what a what a good person? What

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Speaker 1: a good person, and then you feel like a good

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Speaker 1: person when you watch it because you're connecting with the

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Speaker 1: person who was doing the quote like brave act of charity.

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Speaker 1: But when you break that down, it's actually really insultating

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Speaker 1: because what you're saying is an able bodied person couldn't

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Speaker 1: possibly just want to go to prom with someone who's disabled.

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Speaker 1: You know, It's like it's like a it's like an

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Speaker 1: insult when you unpack it. Yeah, it really is on

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Speaker 1: a much lesser, much much lesser scale. My junior year,

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Speaker 1: this guy asked me out, I will say, probably out

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Speaker 1: of pity, and my mom thanked him in front of

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Speaker 1: all all of my classmates as if he had done

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Speaker 1: this grand gesture just to do me the honor of

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Speaker 1: asking me out, because no one else was going to

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Speaker 1: let's face it bridges. Yeah, I mean, couldn't he just wanted? Like,

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Speaker 1: what your mom was really saying is that anyone who

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Speaker 1: would take you out is do being an act of charity. Ye,

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Speaker 1: that's true. Yeah, and again this is a very minor

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Speaker 1: thing compared to what we're talking about today. But I

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Speaker 1: felt terrible. I felt really bad. Oh my goodness, I

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Speaker 1: guess like my value was less yeah, Well that's the thing.

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Speaker 1: Nobody wants to be somebody else's charity case. Nobody wants

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Speaker 1: to feel like they're you know, someone is spending time

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Speaker 1: with them or doing something with them as an act

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Speaker 1: of charity or to make themselves still good. And again,

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Speaker 1: why that's so problematic, it's because it totally it's it's

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Speaker 1: just almost invalidates the agency of the other person, right,

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Speaker 1: So like people aren't asking the disabled person how they

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Speaker 1: feel about this experience. You're only experiencing it to the

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Speaker 1: lens of the able bodied person. And that's not okay.

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Speaker 1: It's completely taking away folks as agency. After this quick break,

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Speaker 1: will be joined by Annie Laney another Annie, but this

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Speaker 1: one spelled a little bit differently than me. She is

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Speaker 1: a YouTuber, writer, artist, speaker, and advocate. Her video on

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Speaker 1: why saying someone quote overcame their disability was super helpful

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Speaker 1: in our understanding of why this perhaps well meaning sentiment

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Speaker 1: can actually be limiting. Annie, I am so so glad

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Speaker 1: you could join us today. Thank you so much for

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Speaker 1: being here, Thank you so much from finding me. So,

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Speaker 1: you know, we live in kind of a depressing world

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Speaker 1: where I feel like folks are thirsting for sort of

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Speaker 1: uplifting content on social media. But do you ever feel

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Speaker 1: that people with disabilities are kind of used as I

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Speaker 1: don't want to say inspiration porn, but inspiration porn where

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Speaker 1: you know, a seemingly heartwarming story goes a viral on

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Speaker 1: social media and everyone is supposed to swoon, but actually

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Speaker 1: when you break it down, it's actually a little bit gross. Right, Um,

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Speaker 1: well that's actually I don't know if you, uh, we're

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Speaker 1: aware or not, or if you just um stumbled upon

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Speaker 1: the word. But so yeah, the inspiration porn is actually

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Speaker 1: a coin term by a disabled activists sell a young Um.

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Speaker 1: She brought it up the first time and her ted

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Speaker 1: talks what was it called? I think it was called, um,

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Speaker 1: I'm not your inspiration something in one of those lines,

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Speaker 1: um about how like she, as a disabled child would

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Speaker 1: kind of like get these certain glamorized participation awards for

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Speaker 1: stuff that maybe she didn't even participate in. Um, and

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Speaker 1: she could tell that it was because of her disability. Um.

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Speaker 1: So inspiration part I want to like try and like

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Speaker 1: smash it into a small compact definition. It's essentially when

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Speaker 1: um in in a narrative, right, and a disabled person's narrative,

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Speaker 1: a disabled person is being objectified for the quote inspiration

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Speaker 1: of the non disabled gays or the abled gays. Uh.

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Speaker 1: So this happens a lot with like Um, I see

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Speaker 1: it a lot with like stories of disabled people being

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Speaker 1: asked out to a prom and even and you know

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Speaker 1: those promposals that go viral and things, and it may

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Speaker 1: not even be the most glamorous or viral worthy promposal.

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Speaker 1: It's just the fact that the disabled person was asked

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Speaker 1: to prom and people start crying and all these things.

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Speaker 1: And I have difficulty understanding that reaction to a degree.

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Speaker 1: I can understand that people think that it's sweet to

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Speaker 1: do nice things for people, sure, but also I think

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Speaker 1: that if people kind of really took it, took a

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Speaker 1: moment to think about what they're feeling and why, it's

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Speaker 1: typically because they have a certain bias about disabled people

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Speaker 1: and certain assumptions about disabled people, and so for them,

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Speaker 1: it may be very surprising that somebody would ask a

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Speaker 1: disabled person at the prom and it would be so

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Speaker 1: pity or for kindness and not because they genuinely want

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Speaker 1: to be with them. Um, which is a messed up

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Speaker 1: assumption to make. Um that that is inspiration point that

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Speaker 1: is objectifying disabled people for their own uh inspiration for

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Speaker 1: their own jolly is for their own good feeling that

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Speaker 1: they get for themselves. I think that's kind of where

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Speaker 1: it comes from. They use the word porn specifically, um

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Speaker 1: because it's kind of like a jerking off situation there.

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Speaker 1: It is, it's for their own feel goods without really

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Speaker 1: without really thinking about what it is that they're enjoying

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Speaker 1: themselves too. Does that make sense? Definitely? And I think,

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Speaker 1: I mean, I think the use of the word porn

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Speaker 1: is so telling because it really is not about the

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Speaker 1: disabled person. It's really about an able the able body

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Speaker 1: gaze feeling good. Like, oh, I just watched the video

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Speaker 1: of a disabled person being asked out to prom that

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Speaker 1: the able bodied person that must be so big as them,

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Speaker 1: Like they're such a good person and I am a

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Speaker 1: good person for feeling good at watching it, like everybody

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Speaker 1: is getting off on feeling good and no one is

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Speaker 1: thinking about this actual disabled person and what that experience

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Speaker 1: is like for them. Yeah, their actual autonomy and like

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Speaker 1: you know that they consent to go viral and things

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Speaker 1: like that. Uh, it's not just like proposals are like

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Speaker 1: my big example, but like it goes for you know,

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Speaker 1: there was like a news story about an artistic young

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Speaker 1: man who got a job at Starbucks and that went viral,

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Speaker 1: And I'm like, why why is it a viral story

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Speaker 1: that a disabled person got a job? I I honestly,

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Speaker 1: honestly don't understand that. Shouldn't this story be about job

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Speaker 1: inequality for disabled people? How can we make jobs more

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Speaker 1: accessible for them? Like? Shouldn't those be the stories that

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Speaker 1: we're reading? Not oh good on this one guy who

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Speaker 1: hired a disabled person pat on the back, Cookies for you,

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Speaker 1: trophies for you. I I don't. I don't see what's

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Speaker 1: so great about someone doing you know, the most basic decency,

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Speaker 1: the most basic equality that should be already normalized, but isn't.

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Speaker 1: Um and you know, and I already I can already

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Speaker 1: hear the you know, the comeback for that, like, well,

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Speaker 1: it's not normalized yet, so we should be rewarding it

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Speaker 1: whenever we see it. Um. Sure, but that's not the conversation.

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Speaker 1: We're not. Nobody's even trying to normalize it. They sense

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Speaker 1: that they sensationalize it every time, So so that's not

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Speaker 1: really valid either. You can't say we should reward it

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Speaker 1: in order to normalize it when you're not trying to

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Speaker 1: you're just sensationalizing it when ever you see it. Yeah,

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Speaker 1: I think that's a really important distinction, because if you're

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Speaker 1: talking about normalizing it, wouldn't normalizing it showing the reality

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Speaker 1: that a lot of disabled folks are up against an

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Speaker 1: ablest world that does not, you know, afford them the

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Speaker 1: same opportunities and afford them, you know, the same basic

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Speaker 1: things that we take for granted. Isn't wouldn't if we're

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Speaker 1: talking about normalization, it seems to me that we should

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Speaker 1: be reflecting this very serious reality and that an autistic

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Speaker 1: young man getting a job at a Starbucks. It may

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Speaker 1: be it may fill people with warm fuzzies for some reason,

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Speaker 1: but the reality is that people with disabilities, they're often,

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Speaker 1: you know, saddled with this unfair, ablest society that doesn't

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Speaker 1: afford them these these opportunities all too often, and that

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Speaker 1: that reality is more perhaps more difficult to show, and

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Speaker 1: that maybe doesn't give anybody warm fuzzies. And you don't

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Speaker 1: walk away from that feeling, you know, like you've done

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Speaker 1: something good or that you're you know, a quote unquote

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Speaker 1: good person. But that's the actual reality. But we're not

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Speaker 1: showing that. We're showing the one that gives warm fuzzies

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Speaker 1: to people who watch it on YouTube. Yeah, I mean

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Speaker 1: as well. Yeah, just to reiterate what I said is

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Speaker 1: just then if if your idea of rewarding them its

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Speaker 1: sensationalizing them the person who did the hiring, right, Because

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Speaker 1: because notice how will never in these stories really hone

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Speaker 1: in and talk to the disabled person about how they

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Speaker 1: feel about whatever is going on. It's always about the

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Speaker 1: person who hired them or the person who asked them out. Um,

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Speaker 1: It's always about you know, because people view any kindness

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Speaker 1: or equality that a disabled person who gets as charity, right,

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Speaker 1: and so then this charity should be rewarded. But if

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Speaker 1: we were really serious about it about you know, humanizing

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Speaker 1: a desailed person, giving their giving them their autonomy, um,

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Speaker 1: we should be talking to them first. And then we

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Speaker 1: should be to you know, asking ourselves these questions and

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Speaker 1: and turning these questions into action. We should be talking

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Speaker 1: about job inequality. We should be talking about accessibility. We

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Speaker 1: should be talking about why is this a story? Why

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Speaker 1: is it headline news that the sale person got a

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Speaker 1: job or that maybe they got asked out to problem?

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Speaker 1: Why is that news? Um? And how and how do

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Speaker 1: we fix the fact that it's news. How how do

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Speaker 1: we create a more equal society where this isn't a headline,

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Speaker 1: this isn't um shocking to people anymore. Um and and

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Speaker 1: so far you know that it's not the mainstream conversation,

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Speaker 1: but it ends at let's pat the person on the

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Speaker 1: back who did the quote charity that uh, you know

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Speaker 1: asterisk isn't really charity totally. So I actually found your

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Speaker 1: video that I love that. Folks haven't seen it on YouTube,

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Speaker 1: they should definitely check out your video on the idea

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Speaker 1: of quote overcoming disability. So after Stephen Hawking died, I

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Speaker 1: saw so many kind of I assume well meeting stories

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Speaker 1: about how he quote overcame his disability and went on

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Speaker 1: to be great. And I even saw this image that

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Speaker 1: I think I would say went viral where it's Stephen Hawking.

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Speaker 1: It's his chair kind of in the background and he

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Speaker 1: is standing walking sort of into the cosmos and kind

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Speaker 1: of I mean, I get what they are trying to

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Speaker 1: depict on this image, right, like in the afterlife, he

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Speaker 1: he can walk and he doesn't need his chair and

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Speaker 1: all of that. But when you actually think about that,

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Speaker 1: it's really a super problematic sentiment that you know, that

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Speaker 1: would depict somebody in the afterlife that way. I really,

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Speaker 1: I really, I was surprised to see that image go viral.

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Speaker 1: Clearly connected with people for some reason, but I was

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Speaker 1: really surprised to see that image sort of all over

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Speaker 1: the place. Yeah, well I can, I can very easily

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Speaker 1: tell you what people connected with. And again it's this

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Speaker 1: objectification of disabled people that they especially wheelchair users, people think.

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Speaker 1: It's very telling that the word people used over and

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Speaker 1: over and over again was that Stephen Hawking is now

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Speaker 1: free of his wheelchair, implying you know what they firmly believe,

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Speaker 1: which is that a wheelchair is a trap and um,

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Speaker 1: a wheelchair is a cage. Um. And so that was

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Speaker 1: really the big part that was very upsetting was was

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Speaker 1: that language, too, was with freedom and there was a

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Speaker 1: lot of elements that were problematic sure about the image

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Speaker 1: because also from what I understand, Stephen Hawking was also

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Speaker 1: an atheist and didn't believe like being a human form

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Speaker 1: in the after life anyway. He said that we would

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Speaker 1: just become stars ast that's what his belief was, right,

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Speaker 1: So this this painting of like him in human form

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Speaker 1: walking away from his wheelchair like that's not even respectful

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Speaker 1: to his beliefs either. Um, but he as a person,

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Speaker 1: you know, I didn't really talk about his wheelchair at

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Speaker 1: the trap. He he he talked about his disability in

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Speaker 1: a way that UM wasn't absolutely proudful, but you know,

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Speaker 1: proud of it. He would say that he wouldn't have

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Speaker 1: made as many discoveries as he did and know what

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Speaker 1: he knew what he knew and learned what he did

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Speaker 1: if it weren't for his disability. Um, he wouldn't be

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Speaker 1: who he was without his disabilities. Um. But people want

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Speaker 1: to cling onto this idea the disability is the end,

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Speaker 1: so much so that one of the most brilliant people

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Speaker 1: on the planet was disabled, and they couldn't wait two

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Speaker 1: seconds after he died to erase his disability from his

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Speaker 1: story to say, Oh, well, you're dead, so you're not

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Speaker 1: disabled anymore. Would we do that with like any other identity, right,

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Speaker 1: Like you're dead, you're not gay anymore, Like you're finally

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Speaker 1: free any other identity like that? Yeah, you're right. People

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Speaker 1: would not depict, you know, another kind of marginalized person

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Speaker 1: like a black person and gay person as being free

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Speaker 1: in the afterlife. And yeah, it's even even in death.

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Speaker 1: He it's like double disrespectful because people were taking up

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Speaker 1: taking it upon themselves to kind of crap on his

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Speaker 1: personal understanding of you know what happens when you die

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Speaker 1: and being ablest while doing it. It's like a double

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Speaker 1: it's like a double whammy. Yeah, it was. It was

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Speaker 1: really bothers him and and it is a complex conversation, right,

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Speaker 1: Like people like people got real sensitive about it, like,

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Speaker 1: I so my disability, I have a chronic illness degenerative

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Speaker 1: disease and um, similar to Stephen Hopkin something that like,

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Speaker 1: can you know, really slowly take away my abilities as

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Speaker 1: I get older which is E D s UM and

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Speaker 1: uh so and it and it causes a lot of

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Speaker 1: chronic pain too. So people got you know, they took

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Speaker 1: it personally and they're like, well, I would hope my

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Speaker 1: disability is chronic pains, and I would hope that in

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Speaker 1: death I'm not in pain anymore. I'm like, this is

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Speaker 1: not this is not invalid, like that that's totally valid. Um.

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Speaker 1: These are very complex conversations, right, It's not just you know,

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Speaker 1: one size fits all about these things, and everybody's gonna

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Speaker 1: have different beliefs talking about the afterlife is so hard,

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Speaker 1: Like everyone has different beliefs and different fears, you know.

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Speaker 1: Um and uh so it's it's not going to be

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Speaker 1: fit sold for everybody. But in regards to Stephen Hawkings specifically,

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Speaker 1: he was very vocal about what he believes, and he

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Speaker 1: was a vocal about how he felt about his disabilities,

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Speaker 1: and it really like was just astonishing as a disabled

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Speaker 1: person to see what an impact he a disabled person made,

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Speaker 1: and that the moment he died, people wanted to erase

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Speaker 1: that aspect of him. Um and and and visualize him

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Speaker 1: as a completely different person. You know, like that's that's

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Speaker 1: kind of scary. They're like, he he was a marvelous

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Speaker 1: person just as he was, and people wanted to, you know,

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Speaker 1: like reanimate him into something that he wasn't. For what

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Speaker 1: that's that's a good question. Why why when he died

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Speaker 1: did they feel the need to reanimate him into something

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Speaker 1: that he wasn't. Um. And that's something everybody should just

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Speaker 1: sit with on their own and figure out. Yeah, that's

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Speaker 1: such a good point. Um, what are some other ways

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Speaker 1: that people with disabilities are raised where you know their

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Speaker 1: stories and they're like I feel like that probably that

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Speaker 1: probably happens so often where you know, this part of

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Speaker 1: someone's identity is just stripped away as if it's a

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Speaker 1: shameful or bad thing. Well, there's a couple of different ways. Um,

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Speaker 1: I think I'm thinking of one person example and one

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Speaker 1: and the broad example. One person example, I can think

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Speaker 1: I was Free to call O, who you know has

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Speaker 1: a giant fandom at the moment. You know, millions of

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Speaker 1: people in the world are giant fans Free to call O.

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Speaker 1: But many of those fans quote unquote, I don't know

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Speaker 1: that she was disabled, and I don't understand how because

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Speaker 1: like that's you know, um, the majority of her n

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Speaker 1: is about her disabilities. Uh. Um, But that is the

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Speaker 1: fact that a lot of people don't know that. In fact,

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Speaker 1: I one of my videos, um is about that. It's

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Speaker 1: called why you Should Love Free to Call O, And

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Speaker 1: it's based on this viral tumbler post that went around

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Speaker 1: that was titled the same thing, was titled why you

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Speaker 1: Should love Free to Callo, and it had a bunch

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Speaker 1: of like cool facts about her that completely erased the

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Speaker 1: fact that she was disabled. Um, she had polio at

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Speaker 1: a really young age, should believe between like six and eight,

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Speaker 1: and so one of her legs. Her right leg was

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Speaker 1: smaller than the other, so she already had difficulty walking. Then,

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Speaker 1: of course her big bus accident when she was a

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Speaker 1: teenager um, which broke practically like every bone in her body,

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Speaker 1: and she dealt with chronic pain and weakness and illness

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Speaker 1: and miscarriages for the rest of her life, having to

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Speaker 1: spend most of her life lying down in bed because

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Speaker 1: of the pain. Um, she she had to make her

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Speaker 1: own accessible way of painting, or which her dad created

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Speaker 1: an diesel for her that would like face down at

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Speaker 1: her so she could paint while she laid in bed. Um.

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Speaker 1: And this is information that a lot of people just

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Speaker 1: were not aware of, and like, she's one of the

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Speaker 1: most famous freaking painters in the world, and people kind

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Speaker 1: of just really wanted to shove her disability under the

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Speaker 1: carpet and just forget that that it happened. And I

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Speaker 1: don't know how you can. You know, for me, her

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Speaker 1: art and her disabilities they're not really separable, but people

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Speaker 1: managed to do it. Again, I think it's really sad

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Speaker 1: that people, you know, in that way, we have like

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Speaker 1: such famous, marvelous people who happened to be disabled, and

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Speaker 1: people just they're so scared of disability. They don't want

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Speaker 1: to remember them way they or they don't want to

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Speaker 1: think about it. Things like that, you know, they make

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Speaker 1: it very very tragic, um, instead of realizing that it

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Speaker 1: was part of them, it was part of their experience,

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Speaker 1: their their life, it was part of their identity. Um.

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Speaker 1: So it's really sad that that happens. Um. But that

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Speaker 1: was just like, you know, that's just one particular example.

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Speaker 1: I think that in general today we also have people

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Speaker 1: who are scared of the word disability period um, of

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Speaker 1: the identity disabled period because a lot of people think

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Speaker 1: that it's a bad word um. And it's actually such

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Speaker 1: a huge umbrella, right, Like you could identify as disabled

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Speaker 1: if you have mental illness, if you have chronic pain,

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Speaker 1: if you have chronic illness. Um, And people are very terrified,

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Speaker 1: you know because for a long time, people I guess

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Speaker 1: they kind of equate disabled with like invalid, which is

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Speaker 1: really gross, um, you know, devalued ugly um. Definitely that

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Speaker 1: because one of the common things you get as a

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Speaker 1: wheelchair users you're too pretty to be in a wheelchair, um,

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Speaker 1: all those things. There's they have some kind of weird

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Speaker 1: phantom visual in their minds about what it means to

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Speaker 1: be disabled. Um, so I'll personally get things like you're

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Speaker 1: too pretty to be in a wheelchair, you're too young

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Speaker 1: to be in a wheelchair. Um, I'll get really rude

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Speaker 1: accusations of faking my disability because I stand up from

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Speaker 1: my wheelchair, which, again, as they mentioned, I have a

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Speaker 1: degenerative disease, so I haven't lost my ability to walk

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Speaker 1: entirely yet. I can still do a few steps, um

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Speaker 1: for short periods of time, but beyond a minute, maybe

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Speaker 1: five minutes of most, I mean my wheelchair, I can't.

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Speaker 1: I can't stand up for longer than than a minute

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Speaker 1: or so, really, And every time I do stand up

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Speaker 1: or do anything like, um, maybe squat or dance a

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Speaker 1: little bit, immediately people want to accuse me of not

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Speaker 1: actually being disabled. So people have a particular idea in

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Speaker 1: their heads, but what that means, And so I just

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Speaker 1: hope that we're moving in the direction where it becomes

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Speaker 1: more neutral and people are more accepting of it. Yeah.

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Speaker 1: One of the things in your video that I wasn't

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Speaker 1: really struck by was this idea that, particularly when it

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Speaker 1: comes to wheelchair use, people think it's a binary either

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Speaker 1: you're completely you know, depended on your wheelchair or you're not.

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Speaker 1: And so if you if someone sees you stand or

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Speaker 1: not using it, they'll you know, be like, oh, you're

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Speaker 1: faking it, you're not really disabled. And that's not actually

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Speaker 1: how disability works. But we see so few images of

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Speaker 1: disability that actually reflects, you know, the spectrum that is

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Speaker 1: a disability. But like, why why why are we not

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00:26:08,640 --> 00:26:10,959
Speaker 1: showing a more realistic depiction of what it's actually like.

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Speaker 1: I think it's like full circles, goes back into inspiration porn.

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Speaker 1: It's um. People like to think of most things is binary, right. Uh.

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Speaker 1: They think of sexuality is binary or either gay or straight.

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Speaker 1: There's no such thing as by asterisk. Of course there is,

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Speaker 1: um there you know, binary genders, um, black or why

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Speaker 1: that the people A lot of a lot of people

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Speaker 1: don't have room in their heads for mixed race people. UM.

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Speaker 1: So for a lot of people, I think it's just

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Speaker 1: simpler and easier to think of it in that way. Um.

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Speaker 1: But then again a lot of it falls under media

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Speaker 1: representation and the stories that people choose to tell. UM.

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Speaker 1: In Hollywood, in media and television, UM, disabled people don't

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Speaker 1: really often get to tell their own stories. Um. It's

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00:27:10,960 --> 00:27:17,040
Speaker 1: it's able writers writing disabled characters, and so already they

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00:27:17,040 --> 00:27:19,439
Speaker 1: think they're doing a charitable service just by writing a

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Speaker 1: disabled character. But then they write a disabled character as

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Speaker 1: what they believe it means to be disabled. Um. And

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Speaker 1: then on top of that, not just that, we get,

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Speaker 1: you know, this awful misrepresentation about what it means and

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Speaker 1: how life is and how we feel. Because the biggest

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Speaker 1: example I can give you is that the majority of

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Speaker 1: like wheelchair users that exist on TV and in movies,

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Speaker 1: they hate their life. They're like, the only goal I

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00:27:48,359 --> 00:27:52,440
Speaker 1: have in my life is to not be in this wheelchair.

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Speaker 1: And that's pretty much just a cookie cutter like character

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00:27:57,160 --> 00:28:03,680
Speaker 1: for any um, for any character with a wheelchair in media. Um.

428
00:28:03,760 --> 00:28:06,440
Speaker 1: But then they you know, twist that nice season further.

429
00:28:07,400 --> 00:28:11,160
Speaker 1: And pretty much any time in a in a movie

430
00:28:11,359 --> 00:28:13,600
Speaker 1: or a TV show that you see someone stand up

431
00:28:13,680 --> 00:28:17,680
Speaker 1: from a wheelchair, it's to reveal. It is to reveal

432
00:28:17,880 --> 00:28:22,479
Speaker 1: the person is faking and deceiving somebody. Yeah, that's true.

433
00:28:23,400 --> 00:28:26,800
Speaker 1: So far, I've never seen I have never seen a

434
00:28:26,840 --> 00:28:31,439
Speaker 1: wheelchair user stand up on TV or in a movie

435
00:28:32,440 --> 00:28:36,360
Speaker 1: just because that's what is in their ability to do.

436
00:28:37,119 --> 00:28:41,760
Speaker 1: It's always with a gun done down like Stella Novella reveal.

437
00:28:42,760 --> 00:28:47,280
Speaker 1: Uh oh, and you know it's the disabled villain trope

438
00:28:47,400 --> 00:28:52,680
Speaker 1: to this. It's uh, she probably was disabled and now

439
00:28:52,800 --> 00:28:58,000
Speaker 1: she's faking it and all this stuff. Um, it's pretty exhausting.

440
00:28:59,000 --> 00:29:04,120
Speaker 1: I really honestly blame media for that kind of Um.

441
00:29:04,240 --> 00:29:08,400
Speaker 1: I believe because if people they just eat it up,

442
00:29:08,760 --> 00:29:13,800
Speaker 1: they just eat it up. And you know, if it

443
00:29:13,920 --> 00:29:20,360
Speaker 1: isn't normalized in the media either, and so people believe

444
00:29:20,440 --> 00:29:26,280
Speaker 1: what they see, and so now real life disabled people

445
00:29:27,880 --> 00:29:34,920
Speaker 1: they get harassed, um, accused, assaulted in public if they

446
00:29:34,960 --> 00:29:39,080
Speaker 1: stand up from their chair. And weirdly enough, even when

447
00:29:39,080 --> 00:29:41,200
Speaker 1: you let go of your cane for a second, people

448
00:29:41,280 --> 00:29:47,920
Speaker 1: will have bad reactions. Um. I had a a friend

449
00:29:47,960 --> 00:29:50,880
Speaker 1: of a friend once to stay in front of me. Yeah.

450
00:29:50,880 --> 00:29:53,080
Speaker 1: I was arguing with this old man with a cane,

451
00:29:53,080 --> 00:29:55,959
Speaker 1: and all of a sudden he started, uh, he raised

452
00:29:56,000 --> 00:29:58,800
Speaker 1: his cane and started pointing around at things. So I

453
00:29:58,840 --> 00:30:03,560
Speaker 1: guess he really didn't need that cane. Huh. Uh. This

454
00:30:03,640 --> 00:30:06,400
Speaker 1: person was fired up, so I couldn't even like correct that,

455
00:30:07,400 --> 00:30:10,840
Speaker 1: and the guy was the villain in the stories. I'm like,

456
00:30:11,000 --> 00:30:13,200
Speaker 1: this is such a weird moment to like have to

457
00:30:13,280 --> 00:30:16,720
Speaker 1: correct that um, but just because somebody is waving their

458
00:30:16,720 --> 00:30:20,200
Speaker 1: cane around doesn't mean they don't need it. But it

459
00:30:20,280 --> 00:30:22,480
Speaker 1: was comments like that that really made me feel unsafe,

460
00:30:22,520 --> 00:30:25,720
Speaker 1: Like it's like you really you really believe in your

461
00:30:25,760 --> 00:30:29,840
Speaker 1: mind that because somebody picks up their cane or doesn't

462
00:30:29,920 --> 00:30:33,120
Speaker 1: lean on their cane pointing at something with their cane,

463
00:30:33,160 --> 00:30:38,640
Speaker 1: that means they don't need it. Why why would you

464
00:30:38,680 --> 00:30:43,040
Speaker 1: think that? And also it's not like it just shows

465
00:30:43,680 --> 00:30:47,680
Speaker 1: the ignorance of it all. It is ignorant, and I mean,

466
00:30:47,760 --> 00:30:50,400
Speaker 1: how many people out there are faking needing a cane?

467
00:30:50,680 --> 00:30:53,760
Speaker 1: It just it's sort of it's like this reality that

468
00:30:53,880 --> 00:30:58,720
Speaker 1: doesn't exist right, Like it's it's so doubling down. And

469
00:30:58,760 --> 00:31:01,360
Speaker 1: I think tropes that out disability that we've seen in

470
00:31:01,720 --> 00:31:04,920
Speaker 1: media that we think it's real, but I don't feel

471
00:31:04,960 --> 00:31:07,520
Speaker 1: like it is real. It's the conversation is very hard

472
00:31:07,520 --> 00:31:10,920
Speaker 1: to have because we don't have real statistics about it,

473
00:31:11,160 --> 00:31:14,760
Speaker 1: you know, like disability statistics are really really hard to find,

474
00:31:15,200 --> 00:31:19,400
Speaker 1: especially like how many people like are disabled in a country,

475
00:31:19,480 --> 00:31:22,760
Speaker 1: Like those statistics are so hard we we have like

476
00:31:23,600 --> 00:31:27,880
Speaker 1: of the country is is disabled, but what does that mean?

477
00:31:28,040 --> 00:31:29,840
Speaker 1: Like the truth we told a lot of people are

478
00:31:30,280 --> 00:31:35,880
Speaker 1: have undiagnosed disabilities. People have chronic migraines and allergies, mental

479
00:31:35,920 --> 00:31:40,239
Speaker 1: illness like that are not document them anything. So so

480
00:31:40,480 --> 00:31:45,800
Speaker 1: that's statistics is likely a lot more than of the country. UM.

481
00:31:45,840 --> 00:31:48,440
Speaker 1: And when it comes to statistics about saking, we just

482
00:31:48,480 --> 00:31:50,680
Speaker 1: don't have any. All we can do is kind of

483
00:31:50,680 --> 00:31:56,200
Speaker 1: try and trust what what our experiences are. And that's

484
00:31:56,200 --> 00:32:01,520
Speaker 1: where things get really muddy. UM because as uh so

485
00:32:01,640 --> 00:32:05,360
Speaker 1: I have you know, large social circles of disabled people,

486
00:32:05,560 --> 00:32:08,600
Speaker 1: and so what I bring to the table and my

487
00:32:08,680 --> 00:32:12,200
Speaker 1: experience and observation is how often they are harassed and

488
00:32:12,240 --> 00:32:16,880
Speaker 1: accused of faking their disabilities when they're not. UM. Most

489
00:32:16,920 --> 00:32:20,760
Speaker 1: of them have chronic illnesses and use mobility aids to

490
00:32:20,840 --> 00:32:25,400
Speaker 1: help them get around. UM. Without them, they wouldn't be

491
00:32:25,440 --> 00:32:33,040
Speaker 1: able to. But they're not paralyzed or or entirely reliant

492
00:32:33,160 --> 00:32:37,120
Speaker 1: on those mobility aids. UM. But then if I speak

493
00:32:37,160 --> 00:32:41,480
Speaker 1: with someone who is one of those angry people who

494
00:32:41,680 --> 00:32:48,960
Speaker 1: is on the hunt for disability fakers, UM, they'll tell me, uh,

495
00:32:49,040 --> 00:32:52,360
Speaker 1: in response to something like I don't think that really happens,

496
00:32:52,960 --> 00:32:55,880
Speaker 1: they'll say yes, because I know a person they told

497
00:32:55,880 --> 00:33:00,640
Speaker 1: me that they fake it just to just to get

498
00:33:00,800 --> 00:33:06,800
Speaker 1: their disability parking paths or whatever. And all I can

499
00:33:06,880 --> 00:33:08,560
Speaker 1: all I can respond with is like, that's such a

500
00:33:08,560 --> 00:33:16,400
Speaker 1: freaking anomally. So it's like that rarely happens, and and

501
00:33:16,520 --> 00:33:19,720
Speaker 1: people can still be wrong unless somebody fully admits to

502
00:33:19,800 --> 00:33:25,280
Speaker 1: you to your face, says hey, I'm faking this thing

503
00:33:26,320 --> 00:33:31,400
Speaker 1: because I want this thing, then you will never know.

504
00:33:31,480 --> 00:33:34,480
Speaker 1: I think somebody also said, oh, I know for sure

505
00:33:34,520 --> 00:33:37,840
Speaker 1: this person is faking. I'm like, why, how do you know?

506
00:33:37,960 --> 00:33:40,200
Speaker 1: I'm always waiting for them to tell me. This person

507
00:33:40,280 --> 00:33:44,280
Speaker 1: confessed to me that is the That is the the

508
00:33:44,440 --> 00:33:46,640
Speaker 1: answer I want. When I said how do you know,

509
00:33:47,120 --> 00:33:52,040
Speaker 1: the person said, I know that she's faking because she

510
00:33:53,080 --> 00:33:56,240
Speaker 1: was using her cane and then when she was about

511
00:33:56,280 --> 00:33:59,080
Speaker 1: to miss the bus, she lifted up her cane and

512
00:33:59,200 --> 00:34:03,040
Speaker 1: she ran to the us. I said, that's that's not

513
00:34:03,560 --> 00:34:06,480
Speaker 1: That does not mean the person if baking. I couldn't

514
00:34:06,480 --> 00:34:11,160
Speaker 1: do that too. I could do that too. It's called adrenaline.

515
00:34:11,840 --> 00:34:16,760
Speaker 1: It's called like I use a cane mainly for balance.

516
00:34:17,600 --> 00:34:20,960
Speaker 1: Uh my, my joints are very weak and they collapse

517
00:34:21,200 --> 00:34:24,160
Speaker 1: kind of like a those wooden toys that connect the

518
00:34:24,239 --> 00:34:28,960
Speaker 1: joints at the with a string. Basically, my joints are

519
00:34:29,000 --> 00:34:32,760
Speaker 1: like thin strings. Um, so I can easily like fall

520
00:34:32,800 --> 00:34:38,600
Speaker 1: down and injure myself. Um. And so while it is

521
00:34:38,680 --> 00:34:42,840
Speaker 1: a risk for me to like sprint a few feet

522
00:34:43,840 --> 00:34:48,840
Speaker 1: um when adrenaline kicks in, Like it's like, um, my

523
00:34:48,960 --> 00:34:51,680
Speaker 1: dog is about to get injured or run into the

524
00:34:51,680 --> 00:34:54,279
Speaker 1: street or something I might do. I might risk it.

525
00:34:54,600 --> 00:34:59,279
Speaker 1: I'll risk injury and like sprint um like five ft

526
00:34:59,280 --> 00:35:02,600
Speaker 1: in front of me or something. Um, but I risked injury.

527
00:35:02,760 --> 00:35:06,280
Speaker 1: I probably hurt myself. I probably am going to feel

528
00:35:06,320 --> 00:35:10,560
Speaker 1: it in my muscles with my alga pains later. That

529
00:35:10,600 --> 00:35:16,200
Speaker 1: doesn't mean that that my disability isn't real. Like, so

530
00:35:16,360 --> 00:35:18,880
Speaker 1: you can't you can't even look at situations like that.

531
00:35:20,239 --> 00:35:24,439
Speaker 1: Somebody hobbling and then going and then running doesn't mean

532
00:35:24,480 --> 00:35:27,799
Speaker 1: that they're not disabled or that they're faking it. The

533
00:35:27,920 --> 00:35:32,680
Speaker 1: only answer I'm willing to accept is somebody confessing to you.

534
00:35:33,160 --> 00:35:39,080
Speaker 1: But that's what's up, because your observations they they're they're

535
00:35:39,120 --> 00:35:44,560
Speaker 1: not full proof evidence of that. We'll pick up the

536
00:35:44,560 --> 00:35:57,040
Speaker 1: conversation after a quick break and we're back. This is

537
00:35:57,080 --> 00:36:01,160
Speaker 1: sort of a larger point or a larger frustration of mine.

538
00:36:01,600 --> 00:36:06,160
Speaker 1: But when people sort of appoint themselves the medical professional

539
00:36:06,280 --> 00:36:09,239
Speaker 1: of a stranger, so they'll say like, oh, you know

540
00:36:10,040 --> 00:36:12,200
Speaker 1: you're not really disabled because I saw you do X,

541
00:36:12,440 --> 00:36:16,319
Speaker 1: or you know you're you can't be you can't be

542
00:36:16,520 --> 00:36:20,840
Speaker 1: healthy because you are, you know, heavier. Like like, I

543
00:36:20,840 --> 00:36:22,120
Speaker 1: don't know how we got to a place in this

544
00:36:22,239 --> 00:36:26,960
Speaker 1: society where strangers will assert that they know something about

545
00:36:27,000 --> 00:36:32,439
Speaker 1: your personal like medical or physical body when they don't

546
00:36:32,440 --> 00:36:34,279
Speaker 1: even know you, Like who is this person who is

547
00:36:34,280 --> 00:36:37,279
Speaker 1: watching someone run for the bus and then you know,

548
00:36:38,760 --> 00:36:42,640
Speaker 1: making this, making this this giant leap, this giant claim

549
00:36:42,680 --> 00:36:46,040
Speaker 1: about their body. It's just I I will never understand it,

550
00:36:46,080 --> 00:36:47,759
Speaker 1: And I don't don't know how we got to this

551
00:36:47,800 --> 00:36:52,120
Speaker 1: place as a country, as a world. I try and

552
00:36:52,160 --> 00:36:54,400
Speaker 1: figure that out too. I try, And I think that

553
00:36:54,520 --> 00:36:58,880
Speaker 1: there's like a parallel with like beauty and status with it.

554
00:36:59,360 --> 00:37:05,359
Speaker 1: UM think that once we started because like once upon

555
00:37:05,360 --> 00:37:11,280
Speaker 1: a time, the the huge beauty narrative in our media

556
00:37:11,360 --> 00:37:16,440
Speaker 1: and advertising was you have to be thin, whatever it takes, right,

557
00:37:16,560 --> 00:37:19,720
Speaker 1: So everything was whatever it takes, whatever it takes, self harm,

558
00:37:20,160 --> 00:37:22,560
Speaker 1: do whatever you gotta do. But you've gotta be curving.

559
00:37:22,600 --> 00:37:25,440
Speaker 1: You've gotta be skinny whatever. The body trend of the

560
00:37:25,480 --> 00:37:33,239
Speaker 1: moment is um and uh. Very recently it became about health, right,

561
00:37:33,400 --> 00:37:37,200
Speaker 1: you Like, the healthy body is the most ideal body

562
00:37:37,239 --> 00:37:41,560
Speaker 1: now um and and people try to play games with

563
00:37:41,600 --> 00:37:44,600
Speaker 1: that working so much so like I'm okay as long

564
00:37:44,640 --> 00:37:47,680
Speaker 1: as they're healthy that and it's always very judgmental. And

565
00:37:47,719 --> 00:37:51,560
Speaker 1: it's judgmental because now health is such um and and

566
00:37:51,560 --> 00:37:54,960
Speaker 1: it always has been. But really now, especially in regards

567
00:37:55,000 --> 00:38:02,000
Speaker 1: to like beauty, like able status, right, people are really

568
00:38:02,920 --> 00:38:07,239
Speaker 1: really distrumental because they're insecure about their own stuff. They're

569
00:38:07,280 --> 00:38:11,000
Speaker 1: insecure about where they stand in regard to their house.

570
00:38:11,080 --> 00:38:12,759
Speaker 1: And it doesn't mean that they're not healthy right now.

571
00:38:13,840 --> 00:38:16,399
Speaker 1: In fact, a lot of them, you know, they prioritize

572
00:38:16,440 --> 00:38:20,440
Speaker 1: their health, but it's more about their insecurity about you know,

573
00:38:21,520 --> 00:38:24,440
Speaker 1: that kind of thing ever happening to them. There's you know,

574
00:38:24,719 --> 00:38:28,360
Speaker 1: for people, their biggest fears to become fat, their biggest

575
00:38:28,400 --> 00:38:32,480
Speaker 1: fears to become disabled. H And it's not something they

576
00:38:32,520 --> 00:38:36,200
Speaker 1: even try to hide. Like people will see me total

577
00:38:36,280 --> 00:38:39,879
Speaker 1: strangers will see me in public in my wheelchair and

578
00:38:40,000 --> 00:38:43,320
Speaker 1: say to me, you're so brave. I would kill myself

579
00:38:43,360 --> 00:38:50,960
Speaker 1: if I were you. Um which is not a compliment.

580
00:38:52,320 --> 00:38:57,840
Speaker 1: But they pour a little angels bless their hearts. Thanks,

581
00:38:57,880 --> 00:39:05,000
Speaker 1: so they think that it's a compliment. Um. And and

582
00:39:05,040 --> 00:39:11,320
Speaker 1: it's it's just the entire picture is just very very sad. Um.

583
00:39:13,200 --> 00:39:22,120
Speaker 1: And I thought that that quote compliment is disturbing and

584
00:39:23,120 --> 00:39:27,719
Speaker 1: just such a sad reminder, uh about what people think

585
00:39:27,719 --> 00:39:30,879
Speaker 1: about disability. You know, it all comes full circle. It's

586
00:39:31,080 --> 00:39:38,439
Speaker 1: that people have this unquestioned belief system about disability. They're

587
00:39:38,480 --> 00:39:42,800
Speaker 1: just ready to believe that it's tragic, that it's ugly, um,

588
00:39:42,840 --> 00:39:47,200
Speaker 1: that it's the end of something. Ah. When people say

589
00:39:47,320 --> 00:39:51,520
Speaker 1: something like you're so brave because you use a wheelchair.

590
00:39:52,960 --> 00:39:54,840
Speaker 1: So I've had people say I don't know how you

591
00:39:54,920 --> 00:40:00,800
Speaker 1: do it to say I wouldn't be able to do it. Um. First,

592
00:40:01,520 --> 00:40:10,799
Speaker 1: those kind of comments are based on misrepresentation. They they

593
00:40:10,840 --> 00:40:14,040
Speaker 1: likely don't know any other disabled people in real life.

594
00:40:14,520 --> 00:40:17,680
Speaker 1: All all they know, all they have to go on

595
00:40:17,880 --> 00:40:22,399
Speaker 1: is based on the movies and TV. And like I said,

596
00:40:22,440 --> 00:40:29,200
Speaker 1: all those characters hate themselves because they use a wheelchair, um,

597
00:40:29,239 --> 00:40:32,560
Speaker 1: which is not based on reality. I mean, sure there

598
00:40:32,600 --> 00:40:36,120
Speaker 1: might be you know, people who that does reflect their reality,

599
00:40:36,160 --> 00:40:40,160
Speaker 1: but that's certainly not everyone. Um. And the second thing

600
00:40:40,200 --> 00:40:44,120
Speaker 1: I have to say is that you can't say I

601
00:40:44,160 --> 00:40:46,359
Speaker 1: wouldn't be able to do that if I were you,

602
00:40:46,480 --> 00:40:51,280
Speaker 1: or I'm not as brave as you or whatever. Um.

603
00:40:51,440 --> 00:40:54,040
Speaker 1: People don't know what they're capable of until they're in it,

604
00:40:55,640 --> 00:40:59,360
Speaker 1: and um Like, clearly I haven't been to use a

605
00:40:59,400 --> 00:41:02,520
Speaker 1: wheel treats in my entire life. My abilities. I started

606
00:41:02,560 --> 00:41:06,479
Speaker 1: losing my abilities um about three or four years ago,

607
00:41:07,239 --> 00:41:09,960
Speaker 1: m losing my ability to walk. Now. My arms are

608
00:41:10,080 --> 00:41:14,640
Speaker 1: are a lot weaker as well, UM, mainly my hands,

609
00:41:14,680 --> 00:41:18,960
Speaker 1: Like sometimes I have difficulty cutting food because basically all

610
00:41:18,960 --> 00:41:22,400
Speaker 1: my joints are just you know, strings are jello, just

611
00:41:22,600 --> 00:41:28,839
Speaker 1: very weak, very fragile. UM. And so there's been moments

612
00:41:28,880 --> 00:41:33,040
Speaker 1: where it's been very scary. UM, But it's my body

613
00:41:33,040 --> 00:41:36,239
Speaker 1: and my life and you just have to you know,

614
00:41:37,080 --> 00:41:42,280
Speaker 1: work with what you've got. It's it's not I don't

615
00:41:43,440 --> 00:41:45,760
Speaker 1: I'm not like this because I'm tough or because I'm brave.

616
00:41:45,800 --> 00:41:49,480
Speaker 1: It's because it's my life. And and people need to

617
00:41:50,640 --> 00:41:54,280
Speaker 1: kind of get that picture together that honestly, we're all

618
00:41:55,200 --> 00:41:57,400
Speaker 1: probably going to be disabled at one point or another.

619
00:41:57,440 --> 00:42:03,120
Speaker 1: People equate getting old or becoming an elder with being disabled. Right,

620
00:42:03,200 --> 00:42:05,160
Speaker 1: they're like, Oh, I'm gonna be old, I'm gonna have

621
00:42:05,200 --> 00:42:06,560
Speaker 1: to use a walker, I'm gonna have to use a

622
00:42:06,640 --> 00:42:13,440
Speaker 1: cane or whatever. Um, So that's disability. We're we're all

623
00:42:13,440 --> 00:42:16,400
Speaker 1: probably gonna be in that space at one point or

624
00:42:16,440 --> 00:42:19,640
Speaker 1: another in our lives, and it doesn't have to be

625
00:42:19,680 --> 00:42:24,839
Speaker 1: such a scary thing, especially especially if we're all you know,

626
00:42:25,000 --> 00:42:31,120
Speaker 1: prepared for it in an emotional, psychological, physical way. Well yeah,

627
00:42:31,200 --> 00:42:33,440
Speaker 1: that's why I love so much of what folks like

628
00:42:33,480 --> 00:42:36,960
Speaker 1: yourself are doing, where you are sort of showing hey,

629
00:42:37,239 --> 00:42:40,759
Speaker 1: disability is not, you know, a dirty word. I saw

630
00:42:40,800 --> 00:42:44,560
Speaker 1: this shirt on your Twitter, disabled joy, and you know

631
00:42:44,680 --> 00:42:50,800
Speaker 1: it's a we don't allow for disabled folks to be happy,

632
00:42:50,920 --> 00:42:53,400
Speaker 1: love their lives. I'm thinking about this story that I

633
00:42:53,440 --> 00:42:55,759
Speaker 1: that I found out when I was researching for this episode.

634
00:42:56,360 --> 00:43:00,200
Speaker 1: This teenager who was an author, Melissa Shank, She support teen.

635
00:43:00,719 --> 00:43:03,560
Speaker 1: She wanted to write a book about a character who

636
00:43:03,600 --> 00:43:05,880
Speaker 1: looks like her. She's in a wheelchair, and so she

637
00:43:05,960 --> 00:43:08,320
Speaker 1: came up with this character who is in a wheelchair,

638
00:43:08,440 --> 00:43:11,239
Speaker 1: who loves YouTube, was very happy, who has a you know,

639
00:43:11,719 --> 00:43:14,320
Speaker 1: a great happy life. And when she went to pitch

640
00:43:14,360 --> 00:43:18,160
Speaker 1: this book, publishers were like, Oh, people aren't gonna buy

641
00:43:18,200 --> 00:43:20,359
Speaker 1: you know, she's too happy. People aren't gonna buy that

642
00:43:20,680 --> 00:43:23,480
Speaker 1: she's a no wheel chair and that she has a

643
00:43:23,480 --> 00:43:27,080
Speaker 1: great life that she loves, or could you make her

644
00:43:27,920 --> 00:43:31,160
Speaker 1: give her a sister and her sister isn't in a

645
00:43:31,160 --> 00:43:34,080
Speaker 1: wheelchair and she is. That's a more interesting story. But

646
00:43:34,080 --> 00:43:37,719
Speaker 1: what they're actually saying is we need to understand this

647
00:43:37,840 --> 00:43:40,840
Speaker 1: character through the lens of somebody who's able bodied, because

648
00:43:41,200 --> 00:43:45,120
Speaker 1: otherwise people's heads will explode. And if this character who's

649
00:43:45,160 --> 00:43:47,279
Speaker 1: in a wheel chair is just a happy, go lucky

650
00:43:47,320 --> 00:43:49,760
Speaker 1: fourteen year old who loves YouTube and ponies or whatever,

651
00:43:50,600 --> 00:43:52,759
Speaker 1: people won't buy it because she's not sad enough. And

652
00:43:52,800 --> 00:43:56,440
Speaker 1: I think that really shows a lot about how we

653
00:43:57,640 --> 00:43:59,960
Speaker 1: what we think about disability and and and the story

654
00:44:00,160 --> 00:44:02,400
Speaker 1: is that we're willing to sort of accept, you know,

655
00:44:02,440 --> 00:44:04,960
Speaker 1: I was really you know, I remember seeing on Twitter,

656
00:44:05,239 --> 00:44:09,600
Speaker 1: um this activist Kia Brown with her hashtag disabled and cute. Right, Like,

657
00:44:10,280 --> 00:44:12,640
Speaker 1: the stories that we tell about folks who are disabled

658
00:44:12,920 --> 00:44:15,640
Speaker 1: are so limiting, and it's like we're not We're so

659
00:44:15,760 --> 00:44:19,600
Speaker 1: not comfortable with anything else if it's not I'm disabled

660
00:44:19,600 --> 00:44:22,840
Speaker 1: and hate my life or I'm disabled and you know,

661
00:44:23,000 --> 00:44:25,640
Speaker 1: it's awful. We just don't. It's just it's and I'm

662
00:44:25,680 --> 00:44:28,319
Speaker 1: not saying those stories don't exist, because sure they probably do.

663
00:44:28,440 --> 00:44:30,920
Speaker 1: Like able body people hate their hate their lives, right like,

664
00:44:31,320 --> 00:44:34,880
Speaker 1: But if we only allow for that one, that one story,

665
00:44:35,280 --> 00:44:40,040
Speaker 1: you know, it's it's all we see, right Well, if

666
00:44:40,040 --> 00:44:43,000
Speaker 1: we did it to any other I'm going to go

667
00:44:43,080 --> 00:44:47,719
Speaker 1: back to uh, like gay representation and again I'm I'm

668
00:44:47,800 --> 00:44:52,320
Speaker 1: gay identify as clear um like. And that's also something

669
00:44:52,320 --> 00:44:54,960
Speaker 1: that we're that we're just now starting to see more of.

670
00:44:55,800 --> 00:44:58,920
Speaker 1: But once upon time and gave representation, it was just

671
00:44:59,680 --> 00:45:04,120
Speaker 1: so sidal gay people or gay people who had been

672
00:45:04,239 --> 00:45:09,560
Speaker 1: victims of violence or murdered, um. And so that was

673
00:45:09,640 --> 00:45:14,279
Speaker 1: just like one one take on what it meant to

674
00:45:14,360 --> 00:45:17,840
Speaker 1: be gay. It meant that you either became ill and died,

675
00:45:18,760 --> 00:45:22,160
Speaker 1: um we're violently attacked and died, or you hated your

676
00:45:22,200 --> 00:45:24,600
Speaker 1: life so much you committed suicide. That one up a time,

677
00:45:24,680 --> 00:45:26,920
Speaker 1: those were like the only stories gave people really got

678
00:45:26,960 --> 00:45:30,760
Speaker 1: to see. And now it's kind of like spreading into

679
00:45:30,800 --> 00:45:37,240
Speaker 1: more um and hopefully more keep coming, more happy endings,

680
00:45:37,600 --> 00:45:43,880
Speaker 1: more diversity in regards to LGBT representation. UM. But that

681
00:45:44,200 --> 00:45:47,040
Speaker 1: is kind of what's happening right now. I think with

682
00:45:47,160 --> 00:45:49,799
Speaker 1: the stabile representation is like people are only accepting this

683
00:45:49,880 --> 00:45:55,040
Speaker 1: one take. And UM, you know, if you don't live

684
00:45:55,040 --> 00:45:57,680
Speaker 1: in a very diverse place, if you don't have a

685
00:45:57,719 --> 00:46:02,120
Speaker 1: diverse group of friends, that's all you have. All you

686
00:46:02,239 --> 00:46:04,200
Speaker 1: have is what you get through the TV and the

687
00:46:04,239 --> 00:46:07,560
Speaker 1: movie screen. Um. And so those are the only ways

688
00:46:07,600 --> 00:46:10,839
Speaker 1: you can for form opinions about groups of people. And

689
00:46:11,320 --> 00:46:16,200
Speaker 1: you know, it just it breeds prejudice with people who

690
00:46:17,840 --> 00:46:21,560
Speaker 1: you know are only surrounded by their own communities. UM.

691
00:46:21,840 --> 00:46:25,480
Speaker 1: I think I'm thinking specifically of like you know, Middle America,

692
00:46:25,600 --> 00:46:30,560
Speaker 1: where like it's not very diverse in certain spaces. Um

693
00:46:30,600 --> 00:46:34,680
Speaker 1: and UM, you know, I just I really hope for that.

694
00:46:34,760 --> 00:46:37,480
Speaker 1: I really hope that we're in a time where like

695
00:46:38,400 --> 00:46:42,640
Speaker 1: disabled people are really starting to be heard. I hope.

696
00:46:42,680 --> 00:46:50,400
Speaker 1: So it's because it's the erasure has been very very heavy. UM.

697
00:46:50,400 --> 00:46:53,239
Speaker 1: A story that I'll mention sometimes is that in the

698
00:46:53,320 --> 00:46:56,560
Speaker 1: same year that the Pulse massacre happened, which was very

699
00:46:56,880 --> 00:46:59,880
Speaker 1: hit me very hard at Pulse of the place that

700
00:46:59,880 --> 00:47:02,120
Speaker 1: I used to go to all the time when I

701
00:47:02,160 --> 00:47:06,760
Speaker 1: lived in Orlando, even before that. UM. And I feel

702
00:47:06,760 --> 00:47:09,719
Speaker 1: like my little gay heart like grew up in that

703
00:47:09,800 --> 00:47:16,280
Speaker 1: place in a way. UM. And about a month after

704
00:47:16,360 --> 00:47:19,840
Speaker 1: that happened, and we saw like you know, so many

705
00:47:20,480 --> 00:47:23,520
Speaker 1: like large spaces, you know, like their buildings up in

706
00:47:23,600 --> 00:47:26,719
Speaker 1: rainbows and support and like there was It was a

707
00:47:26,800 --> 00:47:33,240
Speaker 1: moment where people kind of acknowledged the hatred that LGBT

708
00:47:33,400 --> 00:47:37,040
Speaker 1: people face, and they wanted to show their support. They

709
00:47:37,080 --> 00:47:39,239
Speaker 1: wanted to say, we know that some people out there

710
00:47:39,280 --> 00:47:41,640
Speaker 1: hate you, and some people are willing to murder you,

711
00:47:42,360 --> 00:47:44,440
Speaker 1: but I know that you are supported and that the

712
00:47:44,480 --> 00:47:50,440
Speaker 1: community has your back. UM. And then the following month, Uh,

713
00:47:51,080 --> 00:47:58,440
Speaker 1: it wasn't us, but it was still very vital in Japan. Um,

714
00:47:58,480 --> 00:48:05,319
Speaker 1: there's a massacre, the second largest massacre Japan has ever had. UM.

715
00:48:05,719 --> 00:48:12,399
Speaker 1: A man went in to a disabled community home at

716
00:48:12,520 --> 00:48:18,040
Speaker 1: night and UM massacred a lot of them. I think

717
00:48:18,080 --> 00:48:23,640
Speaker 1: that he ended He ultimately murdered nineteen people and injured UM.

718
00:48:24,440 --> 00:48:28,799
Speaker 1: I think like forty more. And it was with it

719
00:48:28,880 --> 00:48:31,720
Speaker 1: was it was an able massacres, an able to attack.

720
00:48:32,440 --> 00:48:38,080
Speaker 1: He had pre written to parliament that disabled people were

721
00:48:38,160 --> 00:48:41,440
Speaker 1: a burden on the economy and a burden on their families,

722
00:48:41,719 --> 00:48:48,239
Speaker 1: and that he knew how to get rid of them,

723
00:48:48,280 --> 00:48:50,200
Speaker 1: and that he said that he could get rid of

724
00:48:50,280 --> 00:48:55,160
Speaker 1: hundreds of them in one night, um for the betterment

725
00:48:55,280 --> 00:49:02,239
Speaker 1: of the country. Ah. And when that happened, there was

726
00:49:02,320 --> 00:49:09,040
Speaker 1: no international response, There was no response period, and that

727
00:49:09,360 --> 00:49:12,640
Speaker 1: like it really really hit me again. Like this was

728
00:49:12,760 --> 00:49:15,880
Speaker 1: one month after Pulse. I was already like in a

729
00:49:17,480 --> 00:49:21,200
Speaker 1: in a depression from that and then it and my

730
00:49:21,280 --> 00:49:27,240
Speaker 1: depression got worse because of the silence. Were the only

731
00:49:27,280 --> 00:49:31,120
Speaker 1: people I saw talking about this story were other disabled people,

732
00:49:31,680 --> 00:49:34,040
Speaker 1: And I kind of felt like disabled people were like

733
00:49:34,239 --> 00:49:37,960
Speaker 1: screaming like, look at this, look at this, look at

734
00:49:38,080 --> 00:49:41,880
Speaker 1: what happens. Look at how able is um kills people?

735
00:49:43,000 --> 00:49:48,279
Speaker 1: And nobody cared um. And it just felt and I

736
00:49:48,400 --> 00:49:52,200
Speaker 1: just felt like nobody would care if we disappeared. And

737
00:49:52,360 --> 00:49:56,759
Speaker 1: and that's the that's the that is the message that

738
00:49:56,880 --> 00:50:00,279
Speaker 1: just keeps being told all the time. Again it goes

739
00:50:00,280 --> 00:50:06,839
Speaker 1: back to Stephen Hawking, right, like he he became one

740
00:50:06,840 --> 00:50:10,920
Speaker 1: of the most marvelous, brilliant people on the planet and

741
00:50:11,040 --> 00:50:13,279
Speaker 1: he died. And the first thing people want to do

742
00:50:13,480 --> 00:50:19,280
Speaker 1: is a racist disability. People are constantly sending the message

743
00:50:19,320 --> 00:50:23,320
Speaker 1: they don't want disability to exist, they don't want anybody

744
00:50:23,400 --> 00:50:29,160
Speaker 1: to be different. They don't want anybody to um have

745
00:50:29,280 --> 00:50:34,480
Speaker 1: any different needs from them, or or different ways of

746
00:50:34,680 --> 00:50:41,480
Speaker 1: stimming or being quote weird around them or look weird

747
00:50:41,680 --> 00:50:47,520
Speaker 1: for them. They would rather just a solid be gone. UM.

748
00:50:47,560 --> 00:50:54,120
Speaker 1: So I say all that with the intention of kind

749
00:50:54,120 --> 00:50:58,480
Speaker 1: of rounding up like that is the deep dark space

750
00:50:59,600 --> 00:51:03,880
Speaker 1: where all these kind of biases and assumptions about disability

751
00:51:03,960 --> 00:51:06,840
Speaker 1: comes from. The bottom line for a lot of people

752
00:51:07,000 --> 00:51:10,600
Speaker 1: that they wish that disability wasn't real. The bottom line

753
00:51:10,640 --> 00:51:11,960
Speaker 1: is that a lot of people think that it is

754
00:51:12,000 --> 00:51:22,160
Speaker 1: a burden and it is tragic. Um. But optimistically, I

755
00:51:22,200 --> 00:51:25,560
Speaker 1: hope that that's the last time something like that happens,

756
00:51:25,560 --> 00:51:32,799
Speaker 1: not just the violence but the lack of response. UM.

757
00:51:32,840 --> 00:51:37,200
Speaker 1: I hope that the more visibility we have for disabled people,

758
00:51:37,239 --> 00:51:39,200
Speaker 1: the more people will care, and the more people will

759
00:51:39,280 --> 00:51:45,960
Speaker 1: learn um, and they'll see us as actually human, as

760
00:51:46,000 --> 00:51:51,439
Speaker 1: opposed to burdens, which a lot of them do. Mm hmm.

761
00:51:52,520 --> 00:51:56,399
Speaker 1: That is so real. I mean, damn, And I think

762
00:51:56,440 --> 00:51:59,920
Speaker 1: it's it's it's the silence, right, It's this awful thing

763
00:52:00,080 --> 00:52:04,439
Speaker 1: happened after Pulse and just the silence because it did

764
00:52:04,440 --> 00:52:07,960
Speaker 1: barely rate. There was no international outcry. And I think

765
00:52:08,120 --> 00:52:11,200
Speaker 1: it does to me. It does come back to exactly

766
00:52:11,239 --> 00:52:14,759
Speaker 1: what you just said about, you know you, whether it's

767
00:52:15,239 --> 00:52:20,000
Speaker 1: the lack of you know, disabled representation in media, movies, films,

768
00:52:20,560 --> 00:52:24,720
Speaker 1: or it's the silence when nineteen disabled people are are murdered.

769
00:52:25,280 --> 00:52:27,520
Speaker 1: You know that. I feel like both of those kind

770
00:52:27,560 --> 00:52:29,399
Speaker 1: of come from the same space, And I think you're right,

771
00:52:29,400 --> 00:52:31,960
Speaker 1: it's this discomfort. It's this we don't even want to

772
00:52:32,000 --> 00:52:33,319
Speaker 1: deal with it. We don't even want to see it,

773
00:52:33,320 --> 00:52:35,560
Speaker 1: we don't want to acknowledge it in any of the ways.

774
00:52:37,560 --> 00:52:40,359
Speaker 1: So we've talked quite a bit about, um, you know

775
00:52:40,800 --> 00:52:43,759
Speaker 1: how folks of disabilities sort of are not well represented.

776
00:52:44,120 --> 00:52:45,719
Speaker 1: Who out there is sort of getting it right or

777
00:52:45,719 --> 00:52:48,959
Speaker 1: their content creators or films or movies where you think

778
00:52:49,320 --> 00:52:51,040
Speaker 1: I want to see more of this kind of thing

779
00:52:51,040 --> 00:52:59,839
Speaker 1: when it comes to representation. UM. Well, first, Speechless, there's

780
00:53:00,120 --> 00:53:05,160
Speaker 1: the sitcom on ABC. Um is doing a really cool job. Uh,

781
00:53:05,200 --> 00:53:08,200
Speaker 1: And they do have disabled writers on staff too. They

782
00:53:08,200 --> 00:53:13,880
Speaker 1: have Zach Anner, which is a comedian actor YouTuber. UM

783
00:53:13,960 --> 00:53:15,960
Speaker 1: it was. It was really great. In the first season.

784
00:53:16,400 --> 00:53:20,239
Speaker 1: For the first time ever, I saw the characters used

785
00:53:20,239 --> 00:53:22,720
Speaker 1: the term inspiration for and I was like, oh my gosh,

786
00:53:22,760 --> 00:53:27,120
Speaker 1: that's great. It was like getting some like visibility for

787
00:53:27,200 --> 00:53:30,799
Speaker 1: like disability culture. Um. And they like, you know, did

788
00:53:30,800 --> 00:53:33,960
Speaker 1: a one oh one with it. They're like, I think

789
00:53:34,160 --> 00:53:39,360
Speaker 1: the disabled character um was being used in someone's essay

790
00:53:39,600 --> 00:53:42,400
Speaker 1: and and he said, oh great, he's using me as

791
00:53:42,480 --> 00:53:46,760
Speaker 1: inspiration for it. And somebody says, what's that and someone

792
00:53:46,800 --> 00:53:50,759
Speaker 1: responds to him, it's be a getification of disabled people too,

793
00:53:51,040 --> 00:53:56,239
Speaker 1: for the feel goods of able bodied people. UM. So

794
00:53:56,320 --> 00:53:59,200
Speaker 1: I thought it was really like brilliant moment on television

795
00:53:59,239 --> 00:54:04,080
Speaker 1: and got really meat. They got me really excited. Um. Uh.

796
00:54:05,080 --> 00:54:07,480
Speaker 1: The Switched at Birth I heard is kind of debatable

797
00:54:07,480 --> 00:54:09,959
Speaker 1: that they had a lot of deaf actors on that show.

798
00:54:10,000 --> 00:54:13,120
Speaker 1: I think anybody who was a death character was also

799
00:54:13,239 --> 00:54:17,359
Speaker 1: death in real life. That was really great, um. And

800
00:54:19,200 --> 00:54:21,759
Speaker 1: I'm sure I'm missing quite a few things like there's

801
00:54:21,760 --> 00:54:26,319
Speaker 1: been like, uh other things. I'm a big advocate for

802
00:54:26,480 --> 00:54:31,719
Speaker 1: disabled people playing disabled characters, meaning of course disabled actors

803
00:54:32,200 --> 00:54:38,080
Speaker 1: playing disabled characters, um, because that's another bias and discrimination

804
00:54:38,440 --> 00:54:42,479
Speaker 1: in the workplace that happens. Um. People will hire able

805
00:54:42,480 --> 00:54:45,919
Speaker 1: bodied people to say wheelchair users, and they don't even

806
00:54:45,920 --> 00:54:50,960
Speaker 1: give wheelchair using actors an opportunity because oftentimes their audition

807
00:54:51,040 --> 00:54:55,400
Speaker 1: spaces aren't wheelchair accessible, Like there's no elevator into the

808
00:54:55,560 --> 00:55:01,000
Speaker 1: audition room. Um. So that's another that's an their workplace

809
00:55:01,040 --> 00:55:05,880
Speaker 1: discrimination thing that happens. Um. And besides that, you know,

810
00:55:06,040 --> 00:55:10,840
Speaker 1: I think, you know, people creating their own original contents

811
00:55:10,840 --> 00:55:15,200
Speaker 1: a beautiful thing. So I think YouTube is a beautiful thing. Um.

812
00:55:15,280 --> 00:55:21,040
Speaker 1: There's a Jessica Kelgren Hayes on there who she does

813
00:55:21,040 --> 00:55:25,680
Speaker 1: a really great job at a showcasing her life as um,

814
00:55:25,800 --> 00:55:30,400
Speaker 1: a distabled lesbian. Uh. She also has a connective tissue

815
00:55:30,400 --> 00:55:37,320
Speaker 1: disorder and pots so very relatable for me. Um. Also, chronically,

816
00:55:37,400 --> 00:55:42,920
Speaker 1: Jackie is doing the Chronically Ill reality show of Our Dreams.

817
00:55:42,960 --> 00:55:46,680
Speaker 1: She produces a video every day of her life with

818
00:55:46,760 --> 00:55:50,839
Speaker 1: chronic illnesses, and she has one of the only times

819
00:55:51,440 --> 00:55:54,359
Speaker 1: I get to see, you know, on video, somebody who

820
00:55:55,360 --> 00:55:57,879
Speaker 1: is like me, who like uses a wheelchair but can

821
00:55:57,960 --> 00:56:03,080
Speaker 1: walk around a little bit still and and things like that. Um.

822
00:56:03,120 --> 00:56:08,920
Speaker 1: So I'm just hoping, you know, Internet content creation is

823
00:56:09,000 --> 00:56:13,680
Speaker 1: kind of small and relativity too, you know, mainstream media

824
00:56:14,640 --> 00:56:20,600
Speaker 1: like Hollywood or television. Um, but it's still big enough

825
00:56:20,760 --> 00:56:23,560
Speaker 1: that I truly believe that it can make an impact.

826
00:56:24,440 --> 00:56:30,319
Speaker 1: So for now, the real true like heroes for me

827
00:56:30,400 --> 00:56:33,719
Speaker 1: are the people that are creating their content on websites

828
00:56:33,920 --> 00:56:37,759
Speaker 1: like YouTube. UM. In your video you talk about how

829
00:56:37,840 --> 00:56:42,080
Speaker 1: the language of overcoming disabilities sometimes it's disabled people against

830
00:56:42,080 --> 00:56:44,839
Speaker 1: each other. Can you explain that a bit to us?

831
00:56:45,680 --> 00:56:53,720
Speaker 1: Oh yeah, UM, okay, well Jesus, I took seven minutes

832
00:56:53,800 --> 00:56:58,880
Speaker 1: to say all that. But UM, so yeah, the overcoming

833
00:56:58,880 --> 00:57:02,480
Speaker 1: disability UH in short, I don't like it because it

834
00:57:03,080 --> 00:57:10,640
Speaker 1: implies that, UM, whatever is being done uh with a disability,

835
00:57:11,080 --> 00:57:15,040
Speaker 1: that action and the disability are mutually exclusive, which if

836
00:57:15,080 --> 00:57:19,760
Speaker 1: you're using the term overcoming disability, that is clearly false.

837
00:57:20,120 --> 00:57:24,080
Speaker 1: It's an oxymoron that you just did. UM. But the

838
00:57:24,160 --> 00:57:30,200
Speaker 1: other way that is that is used is people who um,

839
00:57:30,280 --> 00:57:37,040
Speaker 1: you know, rehability or recover from something. UM. Specifically, it

840
00:57:37,080 --> 00:57:41,240
Speaker 1: will be used in regards to like a doctor saying, oh,

841
00:57:41,440 --> 00:57:46,920
Speaker 1: they'll never um do this action, and let's just say, oh,

842
00:57:47,000 --> 00:57:50,720
Speaker 1: we'll never walk again, um, and then look at him

843
00:57:50,720 --> 00:57:55,360
Speaker 1: now he's walking, prove that doctor wrong or whatever. And

844
00:57:56,960 --> 00:58:00,360
Speaker 1: people will use stories like that of like these quote

845
00:58:00,640 --> 00:58:07,720
Speaker 1: miraculous recoveries UM to put pressure on other disabled people

846
00:58:07,920 --> 00:58:12,680
Speaker 1: to do the same thing UM and that will come

847
00:58:12,720 --> 00:58:20,240
Speaker 1: from like family, friends, um, our our bosses, anybody. They're like,

848
00:58:20,360 --> 00:58:24,000
Speaker 1: if if this disabled person can do it, why can't

849
00:58:24,080 --> 00:58:28,360
Speaker 1: you um. And the implication there is that you are

850
00:58:28,400 --> 00:58:32,400
Speaker 1: you're lazy if you don't try as hard as that

851
00:58:32,480 --> 00:58:39,520
Speaker 1: person two not be disabled anymore. UM, which all that

852
00:58:39,600 --> 00:58:42,040
Speaker 1: is very toxic because it's not going to be the

853
00:58:42,040 --> 00:58:46,240
Speaker 1: same for everyone. And also sometimes doctors can be wrong

854
00:58:47,240 --> 00:58:51,240
Speaker 1: when sometimes doctors say this person is never gonna walk again,

855
00:58:51,360 --> 00:58:56,480
Speaker 1: see again whatever um is the case at the moment,

856
00:58:57,360 --> 00:59:00,440
Speaker 1: and they are just wrong. It's not some kind of miracle.

857
00:59:00,480 --> 00:59:03,240
Speaker 1: It's not because the person tried harder than other people.

858
00:59:03,640 --> 00:59:11,520
Speaker 1: Sometimes they're just wrong and things change. UM. And it

859
00:59:11,640 --> 00:59:16,840
Speaker 1: also just introduces us to um the belief that people

860
00:59:16,880 --> 00:59:21,000
Speaker 1: have that if you are not trying to not be disabled,

861
00:59:21,000 --> 00:59:24,439
Speaker 1: and you're not worthy of anyone's time, then you are

862
00:59:25,080 --> 00:59:28,760
Speaker 1: a lazy person. You are a burden to them because

863
00:59:28,800 --> 00:59:34,960
Speaker 1: you're not trying hard enough to not be disabled anymore, UM,

864
00:59:35,160 --> 00:59:38,520
Speaker 1: which is so toxic. Some people just they're disabled and

865
00:59:38,560 --> 00:59:43,360
Speaker 1: that's it, like sorry, they're they're not going to change,

866
00:59:43,440 --> 00:59:49,240
Speaker 1: They're not going to get quote better um. And instead

867
00:59:49,280 --> 00:59:55,600
Speaker 1: of inviting them to hate themselves, for it, it would

868
00:59:55,600 --> 01:00:00,200
Speaker 1: be much healthier. Two. You know, accept what's going go on.

869
01:00:01,160 --> 01:00:04,520
Speaker 1: Not to not to give up on your health necessarily,

870
01:00:04,600 --> 01:00:08,560
Speaker 1: that's not what I mean either. But accept what's going on,

871
01:00:09,240 --> 01:00:13,760
Speaker 1: try to enjoy your life anyway, and and do what

872
01:00:13,800 --> 01:00:18,200
Speaker 1: you gotta do. I think so I have again r P,

873
01:00:18,440 --> 01:00:23,160
Speaker 1: a degenerative disease UM, and I'm very accepting of where

874
01:00:23,200 --> 01:00:26,800
Speaker 1: my body is at. While it's there, I do continue

875
01:00:26,800 --> 01:00:29,160
Speaker 1: to push my body and push my limits, and I

876
01:00:29,240 --> 01:00:32,360
Speaker 1: focused on my health UM as best as I can.

877
01:00:33,000 --> 01:00:36,360
Speaker 1: But I won't hate myself for being sick UM and

878
01:00:36,440 --> 01:00:41,760
Speaker 1: I won't hurt myself just to prove that I that

879
01:00:41,760 --> 01:00:47,000
Speaker 1: that I'm capable of certain things. UM. I have to

880
01:00:47,160 --> 01:00:49,200
Speaker 1: I have to care about myself and I have to

881
01:00:49,440 --> 01:00:53,080
Speaker 1: love myself and love my life UM, no matter what

882
01:00:53,200 --> 01:00:56,440
Speaker 1: it looks like, no matter what's going on, I just

883
01:00:56,480 --> 01:00:59,400
Speaker 1: have to find I have to find the gratitude uh

884
01:00:59,400 --> 01:01:04,840
Speaker 1: and the accept of that moment. But again, because of

885
01:01:04,960 --> 01:01:10,600
Speaker 1: able is UM, people would rather pressure disabled people to

886
01:01:10,680 --> 01:01:15,080
Speaker 1: no longer be disabled and tell them that it's their

887
01:01:15,200 --> 01:01:20,320
Speaker 1: failure if they are unable to accomplish that, right. I

888
01:01:20,320 --> 01:01:23,840
Speaker 1: think there's this weird mentality of if I did something,

889
01:01:23,880 --> 01:01:27,080
Speaker 1: if I worked this hard to do whatever, then you

890
01:01:27,200 --> 01:01:31,160
Speaker 1: can to like, like what you said earlier about being lazy,

891
01:01:31,200 --> 01:01:37,240
Speaker 1: that there's this perception of laziness which is completely brong

892
01:01:37,560 --> 01:01:42,440
Speaker 1: and totally ignorant. I mean, especially in regards to like

893
01:01:42,520 --> 01:01:45,080
Speaker 1: invisible illness too. Like a lot of people just have

894
01:01:45,160 --> 01:01:50,560
Speaker 1: trouble believing how fragile my ligaments are. Because of my parents,

895
01:01:50,800 --> 01:01:59,280
Speaker 1: I'm like a thicker, maybe chubby, uh what, brown woman

896
01:01:59,360 --> 01:02:02,560
Speaker 1: and a tall woman, and so when I walked around,

897
01:02:02,640 --> 01:02:07,760
Speaker 1: like I think I probably have the appearance of someone's

898
01:02:07,800 --> 01:02:11,160
Speaker 1: like young and strong, but the truth is that I

899
01:02:11,280 --> 01:02:16,480
Speaker 1: have the fragility of what some would assume would be

900
01:02:17,320 --> 01:02:23,440
Speaker 1: of a like year old woman. Um, which is agism

901
01:02:23,440 --> 01:02:28,280
Speaker 1: by the way, because not all elderly people are disabled. Um,

902
01:02:28,400 --> 01:02:33,720
Speaker 1: but uh yeah, it's it's I think it's hard to

903
01:02:33,800 --> 01:02:38,360
Speaker 1: look at people with invisible illnesses and remember, like what

904
01:02:38,360 --> 01:02:44,440
Speaker 1: what their experiences are. And then sometimes it's not remember.

905
01:02:44,560 --> 01:02:49,520
Speaker 1: Sometimes it's just to believe. Sometimes people just don't believe, um,

906
01:02:49,560 --> 01:02:52,120
Speaker 1: what's going on inside your body. And that's really scary.

907
01:02:52,760 --> 01:02:57,120
Speaker 1: I think it's really scary as a person that's fragile

908
01:02:57,160 --> 01:02:59,640
Speaker 1: and sick and doesn't really look like it on the

909
01:02:59,640 --> 01:03:05,800
Speaker 1: out side. Um. It then creates an environment where people

910
01:03:05,840 --> 01:03:09,040
Speaker 1: have really high expectations of my abilities and I have

911
01:03:09,120 --> 01:03:15,040
Speaker 1: to constantly let them down or UM feel forced to

912
01:03:15,160 --> 01:03:18,800
Speaker 1: push my limits and harm myself because of those expectations.

913
01:03:19,640 --> 01:03:26,040
Speaker 1: Um because because personally, UM, I I feel pressure once

914
01:03:26,160 --> 01:03:29,640
Speaker 1: I make a commitment to something, and so I will,

915
01:03:29,960 --> 01:03:32,160
Speaker 1: I will push myself beyond my limits. I will probably

916
01:03:32,160 --> 01:03:38,320
Speaker 1: harm myself just two complete that commitment. But I do

917
01:03:38,400 --> 01:03:43,920
Speaker 1: wish in my personal life that like people would have

918
01:03:43,960 --> 01:03:48,360
Speaker 1: more consideration for that. But people can't consider those things

919
01:03:48,440 --> 01:03:52,800
Speaker 1: if they forget your condition or if they don't believe

920
01:03:52,840 --> 01:03:56,800
Speaker 1: in your condition. So all that's really hard. Any thank

921
01:03:56,840 --> 01:03:58,960
Speaker 1: you so so much for being here today. Where can

922
01:03:59,000 --> 01:04:00,800
Speaker 1: folks find out more about all the cool things you're

923
01:04:00,840 --> 01:04:06,080
Speaker 1: up to? Um? Well, I am online everywhere as Annie Laney.

924
01:04:06,880 --> 01:04:11,080
Speaker 1: Um that's a double N I double E l A

925
01:04:11,320 --> 01:04:17,400
Speaker 1: I N E y um on YouTube, Twitter, Instagram, and

926
01:04:17,440 --> 01:04:23,120
Speaker 1: I am Annie Sigara on Facebook. Um, and uh that's it.

927
01:04:23,240 --> 01:04:26,960
Speaker 1: I think. Yeah, I can't tell you how instrumental your

928
01:04:27,080 --> 01:04:30,160
Speaker 1: YouTube videos have been for me. When I was feeling

929
01:04:30,360 --> 01:04:32,800
Speaker 1: again kind of gross dad about that Stephen Hawking stuff.

930
01:04:32,840 --> 01:04:35,760
Speaker 1: We were talking about earlier in the episode. Your videos

931
01:04:35,880 --> 01:04:38,560
Speaker 1: just nailed how I was feeling. So if you haven't

932
01:04:38,560 --> 01:04:41,400
Speaker 1: seen any videos, definitely checked them out because they are amazing.

933
01:04:44,080 --> 01:04:47,200
Speaker 1: Thank you, thank you. Yeah, it's definitely overcoming disability. Was

934
01:04:47,240 --> 01:04:49,160
Speaker 1: a little bit of a sub tweet about all that

935
01:04:49,240 --> 01:04:52,560
Speaker 1: Stephen Hawking stuff too. I loved it. Well, thanks so

936
01:04:52,640 --> 01:04:57,919
Speaker 1: much for being here. Thank you at a good time. Well,

937
01:04:57,960 --> 01:05:02,160
Speaker 1: that was really in my evening conversation, and I am

938
01:05:02,240 --> 01:05:06,040
Speaker 1: so glad we got the chance to talk to Annie

939
01:05:06,160 --> 01:05:10,959
Speaker 1: about this, and I really hope that we'll see more

940
01:05:11,320 --> 01:05:18,040
Speaker 1: of these diverse stories soon. Um, and I hope that

941
01:05:18,880 --> 01:05:21,640
Speaker 1: you listeners enjoyed that conversation as well, and we would

942
01:05:21,640 --> 01:05:24,560
Speaker 1: love to hear from you. You can find us at

943
01:05:24,840 --> 01:05:28,520
Speaker 1: stuff Mom Never Told You on Instagram or at mom

944
01:05:28,560 --> 01:05:31,360
Speaker 1: Stuff Podcast on Twitter, or you can always send us

945
01:05:31,480 --> 01:05:44,760
Speaker 1: email Mom Stuff at how stuff works dot com.