WEBVTT

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I know exactly what you're saying when you

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say like when you're sitting at home writing

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you're not like, I'm deaf, I'm deaf

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I'm deaf, I say the same for me

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like when I'm

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sitting around doing my makeup

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I'm not like ooh I'm blind, I'm blind

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Like, I'm not thinking about my

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blindness, I'm just living my life

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because this is our normal

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(Music)

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Hello everybody, we are back

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with my series , where I sit down

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with another person

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from the disability community

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and we disscuss all things

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life and disability related

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and this one is probably the

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most requested that I've seen.

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So we finally have Jessica

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and I'm gonna let you say your

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last name

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(Laughs) Jessica Kellgren-Fozard

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It's ok, I know, it's a difficult surname

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we literally like went over this before

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we started filming

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We've just been like talking on

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Google Meet

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And I was like, practicing the name

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and I was like no, you know what,

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I got here, I was too deep,

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I was like, I'm jumping

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out of the pool.

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She'll take over. So thank you-

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It's ok. It's complex.

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The Kellgren bit is Swedish,

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the Fozard is my wife's surname,

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it's from Normandy, smush it together,

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it's complicated for everyone.

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Or Jessica Out Of The Closet,

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which I think is a brilliant name

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because not only are you one of

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the most fabulous fashionistas

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that I follow on social media,

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but you are also in fact out of

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the closet, and so I think it's just

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such a fun username.

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(Laughs) Yeah,

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out of the closet in many ways.

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Out of the gay closet, out of the

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disability closet, just living life open.

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That's the way to live life.

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Being your best, most authentic,

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confident queen self. And that is

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exactly what you do.

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I watch your videos and I

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legitimately laugh out loud.

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Like you're one of, not only the most

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fashionable people I follow but one of

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the funniest people I follow,

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and I think that you, just by simply

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being you, break so many disability

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stereotypes and misconceptions,

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and I think it's so fabulous for just-

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so thank you for just exisiting

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on the internet.

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(Laughs) I mean, I could say

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the same thing about you, Molly.

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I woke up this morning and I was like,

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OK, Molly, you have to try to look, like,

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a little bit half fabulous

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because you're going to be sitting next to

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Jessica in a video and it's going

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to be embarrassing.

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Oh no, I think you are incredibly stylish,

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I must say. I always enjoy

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your Instagram as well.

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Thank you, I appreciate it.

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So, I know a ton of my audience

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knows and loves your content already

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but for those who don't, would you like to

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kind of give the brief introduction of who

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Jessica is in a nutshell.

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My goodness, okay, the elevator pitch

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of me, then, I guess.

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So, I'm Jessica, I'm a YouTuber,

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content creator. I make content that is

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generally fun, informative, educational,

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amusing, around things that are to do with

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disability, chronic illness, and LGBTQ+

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issues. So I have two genetic conditions,

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hereditary neuropathy with liability to pressure

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palsies, which means that there are gaps

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in the myelin sheaths that surround your nerves.

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For me that means that I can paralyze

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parts of myself, that my nerves are more

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easily damaged, which does things like

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affect my hearing and I have loss of

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vision in one eye because of it, and it

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can do things like my hands don't have

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any feeling because I paralyzed both of

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my arms for a year and a half when I was

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a teenager. And they came back to a

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certain degree, but they can't now feel

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anything, so it's like wearing gloves

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all of the time. And I don't get hot and

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cold, any of those kinds of things,

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or wet. Which is really annoying when

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you're trying to hang up the washing,

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'cause you're like, is this wet?

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Is this dry? Absolutely no idea.

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And I end up having to like, press my face

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to all of my laundry to see whether it's

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dry or not. Very strange thing.

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And then you just get a random cheek stain

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or random foundation stain on the side

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of your white shirt.

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I mean, I should add, I only do this when

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I'm not wearing makeup. (Laughs)

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Pro tip.

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And then I also have Ehlers Danlos

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Syndrome, which is about my connective

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tissue, and means that not only am I

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hyper mobile, and very flexible and bendy,

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which most people think is like, whoa,

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what a great party trick, and it is,

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it's a pretty good party trick that I

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perhaps overused when I was a child.

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I dislocated various things just to prove

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to people that I could. Don't do that.

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That's a terrible idea. Don't do that.

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But it also affects connective tissue in

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things like my internal organs,

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so I have some issues with my heart, and

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I have postural orthostatic tachycardia

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syndrome, which comes from that,

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which is just a regulating blood pressure

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issue, so I faint a lot. And I can't exert

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myself too much, basically I go up two

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flights of stairs and I'm like, oh gosh,

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there's a heart attack coming.

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Ok, wonderful, and then I've got to lie

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on the floor for half an hour.

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And the vintage fashion is just a layer

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over the top, just to make everything look

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gorgeous while we're here

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I think you should

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make more fashion content.

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I'm putting the pitch in now,

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and I think a lot of people

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in the comments will agree

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that you should have like a whole segment

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of your channel devoted to

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fashion content because we need that

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vintage inspo that you bring.

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We need your vintage wisdom.

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I was just, like, as we were talking

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before we started filming, I was

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peppering her with questions

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about the vintage fashion scene

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because I am fascinated by it

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and whenever I've tried to do it,

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it has not necessarily panned out

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So, I feel like you should make fashion

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videos and you know when I started

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doing fashion content

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it was kind of like a total mistake

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I wanted to make one video about, like,

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accessibility of online shopping

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and that was

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supposed to be it.

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But people requested me keep doing it

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and I was like

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"Well, If you want me to feed my addiction

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and talk about something I love,

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I am happy to do so"

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There is people

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in the disability activism community

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who have been upset by that.

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Like, they want me to kind of dedicate

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my channel to disability.

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And I can understand that, but

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to me, I am a human

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and disabilities are a very real,

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important topic to me

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and it affects my life daily,

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but so does fashion

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and the confidence that fashion gives me!

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So does makeup,

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so does my guide dog,

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so does dating,

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so do all these other aspects

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and I think it's very important

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for us, as a disability community,

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to show society the human side

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of our day-to-day life

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and the very normal, average

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human things that we love

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and that we partake in.

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Of course, of course

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I always link this back to

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children's books

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because I think it's the easiest way

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to understand people learning new concepts

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So, there are so many children's books

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that are about issues.

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It's about

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"Some people are in wheelchairs"

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or "some people have 2 mums"

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and kids don't love them.

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They don't want to read those books,

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because they're very much

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focused on this one object that you need

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to learn. It's not fun!

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Whereas, when they are reading

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like a fun, adventure book

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where oh, the main character just

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happens to have a disability

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or just happens to have a different

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family setup to the nuclear family.

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Then it's more engaging

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and they are more willing to learn things

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And I know the great things about

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having disabled content creators

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who are creating content

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that isn't just disability focused

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is that you are also bringing in people

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who wouldn't have necessarily have

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clicked on your video,

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being like "Ooh, I don't know,

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I don't know want to

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watch something about

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a blind person

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because I've never really

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met a blind person

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and that could be awkward."

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But if it's a video where you are

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doing something else

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and they click in,

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they are like

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"Well, you know what,

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this is actually really interesting!

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I'm gonna keep watching her

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other videos as well."

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And then, it's just a great way

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to lead people in, I think

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And they start to really be

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more involved in the issues,

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it's not something that's far away

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Now, it's "oh, my favourite

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content creator Molly

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also happens to have

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a disability and

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also happens to talk about that.

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And now I've learnt things about it"

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So I always think that's the best way,

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but, actually, Molly,

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two birds, one stone,

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to do with this fashion thing,

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I think the next time you come

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to England, I'm gonna have to give you

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a vintage makeover.

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Oh my gosh,

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absolutely!!

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Once this whole madness

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in this world is done,

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and we're all vaccinated,

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I'm coming out to England,

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so I can finally see my brother

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for the first time

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in over a year.

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AND I can see you

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and we are doing the vintage makeover

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I'm absolutely holding you to that.

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But I could not agree more with

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what you've just said.

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My favourite thing about what

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I do is that I get to

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make learning fun for people.

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I get to teach

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people in a way that entertains them

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that truly is the best way to learn.

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That's how I always

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learned the most growing up

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I was never somebody

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who could sit in class

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and hear you talk to me about something.

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I need to be the one

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that was getting up and doing it

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I was a very kinesthetic learner

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I need to be actually doing the thing

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and immersed in it

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to be able to understand it

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and being able to

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hopefully be entertaining to people

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um, while they- they learn

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and open their minds

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to new ways of thinking

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is so rewarding

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so I completely agree with you

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And I always say

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we talk a lot in the disability community

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about the fact that

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y'know that we're quite low

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on the totem pole of causes

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and of things that people care about

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and talk about or know about.

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You know, you often see those like

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"Diversity panels"

00:10:05.918 --> 00:10:08.193
and it's like everything is shown

00:10:09.536 --> 00:10:10.616
... except disability.

00:10:10.616 --> 00:10:11.804
And we're like "Hey now,

00:10:12.514 --> 00:10:13.214
"Hi"

00:10:13.214 --> 00:10:15.208
"Where are we at the table"

00:10:15.208 --> 00:10:17.275
I think so many different

00:10:17.275 --> 00:10:18.970
brands and companies

00:10:18.970 --> 00:10:20.740
think that they can kind of get away

00:10:20.740 --> 00:10:22.615
doing the absolute least

00:10:22.615 --> 00:10:24.635
when it comes to disability representation

00:10:24.635 --> 00:10:26.590
Whether that be in adverts

00:10:26.590 --> 00:10:28.988
or actually making things accessible.

00:10:28.988 --> 00:10:31.427
So many of them think

00:10:31.427 --> 00:10:33.217
"Oh, a person in a wheelchair

00:10:33.217 --> 00:10:34.399
and we're done.

00:10:34.399 --> 00:10:36.058
That's it we've represented every

00:10:36.058 --> 00:10:37.188
disabled person,

00:10:37.188 --> 00:10:39.547
we've covered everyone's needs, excellent.

00:10:39.547 --> 00:10:41.849
Of course our brand is friendly to the

00:10:41.849 --> 00:10:43.825
disabled community, we have a ramp!"

00:10:43.825 --> 00:10:46.274
And you're like, "Uh-huh, I see.

00:10:46.274 --> 00:10:48.954
And how are you helping every other

00:10:48.954 --> 00:10:50.582
disabled person?"

00:10:50.582 --> 00:10:51.332
Mhm, mhm.

00:10:51.332 --> 00:10:53.691
Like, people who use wheelchairs

00:10:53.691 --> 00:10:55.780
actually make up quite a small part

00:10:55.780 --> 00:10:58.650
of the disability population as a whole.

00:10:58.650 --> 00:11:00.779
And, people just cannot get this through

00:11:00.779 --> 00:11:02.492
their heads and, of course, having

00:11:02.492 --> 00:11:04.430
the disability symbol be a wheelchair,

00:11:04.430 --> 00:11:07.970
obviously a very visual way to get that

00:11:07.970 --> 00:11:10.400
across very neatly, but it does tend

00:11:10.400 --> 00:11:12.931
to make people forget everyone else.

00:11:13.577 --> 00:11:15.581
Yes and I- I don't know if this has been

00:11:15.581 --> 00:11:17.601
happening in England but over the

00:11:17.601 --> 00:11:19.564
last number of years I've been seeing

00:11:19.564 --> 00:11:22.672
in North America one change is

00:11:22.672 --> 00:11:24.974
certain places are adding other stickers

00:11:24.974 --> 00:11:27.188
that represent other disabilities.

00:11:27.188 --> 00:11:29.571
Which is nice because for example on

00:11:29.571 --> 00:11:33.146
public transit, like a bus, I need to

00:11:33.146 --> 00:11:35.374
sit down, it's not a question I need to

00:11:35.374 --> 00:11:37.341
be able to sit. Because balance is a

00:11:37.341 --> 00:11:39.185
combination, as I'm sure you know as

00:11:39.185 --> 00:11:41.081
deaf woman, of ears and eyes.

00:11:41.081 --> 00:11:43.039
And so my balance, not being able to see

00:11:43.039 --> 00:11:46.049
is quite off. And so standing on a moving

00:11:46.049 --> 00:11:48.631
vehicle, even if I'm holding a pole, is

00:11:48.631 --> 00:11:51.141
just not really a thing for me. So I need

00:11:51.141 --> 00:11:53.781
sit. And so when I get on a bus with my

00:11:53.781 --> 00:11:56.493
guide dog, people used to not register

00:11:56.493 --> 00:11:58.348
that I was somebody who they needed to

00:11:58.348 --> 00:12:00.198
get out of the disability seating for.

00:12:00.198 --> 00:12:02.081
Um, so they would just continue to sit

00:12:02.081 --> 00:12:04.025
there. But now they've added these

00:12:04.025 --> 00:12:06.441
stickers where it's like a man with a cane

00:12:06.441 --> 00:12:09.422
a person in a wheelchair and there's

00:12:09.422 --> 00:12:11.271
somebody with a walker and I'm like

00:12:11.271 --> 00:12:13.708
Thank you for showing multiple visuals

00:12:13.708 --> 00:12:15.745
of what somebody who might need to sit in

00:12:15.745 --> 00:12:18.152
disability seating could present as.

00:12:18.152 --> 00:12:20.358
Yeah, I've definitely seen in the last few

00:12:20.358 --> 00:12:22.338
years that kind of not all disabilities

00:12:22.338 --> 00:12:25.807
are visible stickers on a lot more things

00:12:25.807 --> 00:12:28.585
in public places. And it's so good to see

00:12:28.585 --> 00:12:31.742
because I remember when I very first-

00:12:31.742 --> 00:12:34.718
so I kind of grew up with a disability

00:12:34.718 --> 00:12:37.158
but it wasn't, well I'm not going to say

00:12:37.158 --> 00:12:39.332
noticed, but it wasn't diagnosed until

00:12:39.332 --> 00:12:42.359
I was 17. And then when I was 17 and I

00:12:42.359 --> 00:12:44.360
suddenly had this big health crisis and

00:12:44.360 --> 00:12:47.060
very much did need to use, you know,

00:12:47.060 --> 00:12:48.837
disabled toilets and I need to have

00:12:48.837 --> 00:12:51.767
access to things. I had a lot of issues

00:12:51.767 --> 00:12:54.973
with this. Because people were constantly

00:12:54.973 --> 00:12:57.138
trying to stop me from using things

00:12:57.138 --> 00:12:59.972
saying "Oh that's not for you that's for

00:12:59.972 --> 00:13:02.197
disabled people." And I'm like I mean

00:13:02.197 --> 00:13:04.910
I am, I don't know what I can do to-

00:13:04.910 --> 00:13:07.776
to make this more obvious to people, that

00:13:07.776 --> 00:13:09.603
I'm really struggling and things would

00:13:09.603 --> 00:13:11.835
help me like this. So it's, it is really

00:13:11.835 --> 00:13:15.042
lovely to see now. I worry less about

00:13:15.042 --> 00:13:17.239
using disabled toilets in public

00:13:17.239 --> 00:13:19.560
when they have a "Not all disabilities

00:13:19.560 --> 00:13:22.020
are visible" sticker on them. Because the

00:13:22.020 --> 00:13:24.699
dirty jokes I've received coming out of a

00:13:24.699 --> 00:13:27.921
disabled toilet on two feet is like, ugh.

00:13:27.921 --> 00:13:29.771
Well I think part of the problem with

00:13:29.771 --> 00:13:31.846
that too is how many able-bodied people

00:13:31.846 --> 00:13:34.597
just do use the toilet for people with a

00:13:34.597 --> 00:13:35.337
disability?

00:13:36.944 --> 00:13:39.028
Um, so many, so many able bodied people

00:13:39.028 --> 00:13:43.028
do use different facilities that are

00:13:43.028 --> 00:13:45.603
accessible and designed for people who

00:13:45.603 --> 00:13:47.523
actually need them due to a disability.

00:13:47.523 --> 00:13:50.069
And, so now I think when people see

00:13:50.069 --> 00:13:52.643
somebody presenting as able-bodied, they

00:13:52.643 --> 00:13:54.573
just kind of assume they're able-bodied

00:13:54.573 --> 00:13:56.553
because of how many able-bodied people do

00:13:56.553 --> 00:13:58.433
take advantage of having a little extra

00:13:58.433 --> 00:14:01.063
wiggle room in the stall for when they're

00:14:01.063 --> 00:14:03.207
pooping and they don't want anyone to hear

00:14:03.207 --> 00:14:05.067
it and I'm like that's not what, that's

00:14:05.067 --> 00:14:07.027
not what that was for. It's not for all

00:14:07.027 --> 00:14:08.777
you extra shopping bags, ma'am.

00:14:08.777 --> 00:14:10.857
It's for people who require either the bar

00:14:10.857 --> 00:14:13.687
for support, who require the extra room

00:14:13.687 --> 00:14:16.417
for a support worker, for a service

00:14:16.417 --> 00:14:18.627
animal, for a mobility device. Like

00:14:18.627 --> 00:14:21.618
there's many reasons that that exists.

00:14:21.618 --> 00:14:23.448
But your extra shopping bags or like

00:14:23.448 --> 00:14:26.361
extra room for popping, isn't what it was

00:14:26.361 --> 00:14:27.151
for.

00:14:27.151 --> 00:14:29.142
The unfortunate thing as well is that

00:14:29.142 --> 00:14:31.195
so many places will put their baby

00:14:31.195 --> 00:14:33.788
changing facilities into the disabled

00:14:33.788 --> 00:14:37.149
toilets. And it's not like a special

00:14:37.149 --> 00:14:40.699
um, weighted table it means that you can

00:14:40.699 --> 00:14:44.121
anyone larger than a baby. It's literally

00:14:44.121 --> 00:14:46.492
just there because they've lumped in

00:14:46.492 --> 00:14:48.962
parents, disabled people, sure. You can

00:14:48.962 --> 00:14:50.798
use the same facilities, it's fine.

00:14:50.798 --> 00:14:52.952
You know, you'll never need more than one

00:14:52.952 --> 00:14:55.266
person using it at the same time. And I've

00:14:55.266 --> 00:14:57.935
had things where I have walked out of a

00:14:57.935 --> 00:15:01.355
disabled toilet and a mother rammed her

00:15:01.355 --> 00:15:04.794
buggy into my legs and was like "Oh, not

00:15:04.794 --> 00:15:07.643
disabled or with a child then." And I was

00:15:07.643 --> 00:15:09.792
like uhhhh... And at the time-

00:15:09.792 --> 00:15:12.034
Actually very disabled thank you!

00:15:12.034 --> 00:15:14.862
And at the time I mean I was a teenager

00:15:14.862 --> 00:15:18.932
and I was too upset to say anything or do

00:15:18.932 --> 00:15:22.036
anything. I'd only just been diagnosed

00:15:22.036 --> 00:15:24.639
and I was like, oh this label of disabled

00:15:24.639 --> 00:15:26.649
do I get to use this? Do I have the right?

00:15:26.649 --> 00:15:28.807
Can I stand up to someone and actually

00:15:28.807 --> 00:15:31.131
say "Actually I am disabled?" And it

00:15:31.131 --> 00:15:34.960
really upset me inside and it was so

00:15:34.960 --> 00:15:36.830
heart wrenching. Despite at the time I

00:15:36.830 --> 00:15:39.915
had two paralyzed arms. Like, both of my

00:15:39.915 --> 00:15:43.081
arms were paralyzed and I needed to use

00:15:43.081 --> 00:15:44.971
the disabled toilet because it was the

00:15:44.971 --> 00:15:47.731
only way that I could go to the loo.

00:15:47.731 --> 00:15:51.051
Um, but for ages after that I would not

00:15:51.051 --> 00:15:52.884
without someone else around.

00:15:52.884 --> 00:15:54.951
You know, you've mentioned, I've mentioned

00:15:54.951 --> 00:15:57.121
that you're deaf, and I think there's a

00:15:57.121 --> 00:15:59.917
a lot of stereotypes that come with that.

00:15:59.917 --> 00:16:02.179
Just like blindness and people are like

00:16:02.179 --> 00:16:04.695
"Blindness, you can't see anything," a lot

00:16:04.695 --> 00:16:06.733
of people think being deaf you can't hear

00:16:06.733 --> 00:16:09.510
anything. Being deaf you can't speak.

00:16:09.510 --> 00:16:12.123
There's a lot of things like that and so

00:16:12.123 --> 00:16:14.495
And then you've mentioned you know your

00:16:14.495 --> 00:16:16.463
diagnosis or being disabled as a child

00:16:16.463 --> 00:16:18.453
and all of these things, but we haven't

00:16:18.453 --> 00:16:20.387
actually like dove into it. So for those

00:16:20.387 --> 00:16:22.357
of my followers who have never heard your

00:16:22.357 --> 00:16:24.437
story could you kind of give a synopsis of

00:16:24.437 --> 00:16:26.327
like, if you're comfortable, what your

00:16:26.327 --> 00:16:29.227
diagnosis is? I know that uh, things like

00:16:29.227 --> 00:16:31.413
EDS can be very hard to diagnose again,

00:16:31.413 --> 00:16:34.143
an invisible disability so what was your

00:16:34.143 --> 00:16:36.743
diagnosis journey to getting all of- all

00:16:36.743 --> 00:16:38.198
of these diagnoses?

00:16:38.198 --> 00:16:41.844
Well, with the NHPP, uh, the diagnosis

00:16:41.844 --> 00:16:44.754
was sort of straight forward in that it

00:16:44.754 --> 00:16:48.071
I'd always struggled with my hands and

00:16:48.071 --> 00:16:51.112
feet as a child. And just being kind of

00:16:51.112 --> 00:16:52.902
what was called "clumsy" because they

00:16:52.902 --> 00:16:55.314
didn't realize that it was because I

00:16:55.314 --> 00:16:58.224
couldn't feel what I was touching. And

00:16:58.224 --> 00:17:00.210
you don't realize things because you

00:17:00.210 --> 00:17:02.080
assume as a child that everyone else is

00:17:02.080 --> 00:17:04.471
like this. So I can't feel the front of

00:17:04.471 --> 00:17:08.081
my calves because when I was a baby I

00:17:08.081 --> 00:17:10.705
crawled around on them and I've never been

00:17:10.705 --> 00:17:13.196
able to feel my knees. And I just assumed

00:17:13.196 --> 00:17:15.176
no one can feel their knees, right? Like

00:17:15.176 --> 00:17:16.966
you can't feel the skin on your knees

00:17:16.966 --> 00:17:19.715
that's weird, who can do that? Um, but I

00:17:19.715 --> 00:17:21.775
thought this was totally normal til I hit

00:17:21.775 --> 00:17:26.863
17 and I was in an exam and I lent on my

00:17:26.863 --> 00:17:29.596
elbow for about twenty minutes whilst I

00:17:29.596 --> 00:17:32.385
writing. And I got a crick in my neck and

00:17:32.385 --> 00:17:35.623
woke up the next morning having paralyzed

00:17:35.623 --> 00:17:38.360
my arms. Because this crick in my neck had

00:17:38.360 --> 00:17:41.323
been so bad, I'm not helped by the stress

00:17:41.323 --> 00:17:43.297
of this exam and the fact I'd been on

00:17:43.297 --> 00:17:45.484
crutches for like six months before this

00:17:45.484 --> 00:17:49.639
point. Um, and I had paralyzed both of my

00:17:49.639 --> 00:17:52.288
arms and they stayed that way for a year

00:17:52.288 --> 00:17:55.188
and a half, which was very difficult. And

00:17:55.188 --> 00:17:57.138
I got rushed to hospital of course and

00:17:57.138 --> 00:17:58.978
they were trying to find out what was

00:17:58.978 --> 00:18:01.058
wrong with me, it could have been a stroke

00:18:01.058 --> 00:18:02.978
it could have been meningitis. And they

00:18:02.978 --> 00:18:04.898
ran all sorts of tests, did all sorts of

00:18:04.898 --> 00:18:06.779
things and then ran a genetic screening

00:18:06.779 --> 00:18:09.334
and were like "Oh, ah, you're actually

00:18:09.334 --> 00:18:12.667
missing a gene." I was like, oh right

00:18:12.667 --> 00:18:16.507
goodness. So I'm a mutant, which is great.

00:18:16.507 --> 00:18:18.595
Still waiting for my X-men powers.

00:18:18.595 --> 00:18:20.765
Fellow mutant here so I'm with you.

00:18:20.765 --> 00:18:22.768
There we go, see? Have you got your X-men

00:18:22.768 --> 00:18:25.050
powers yet? I'm hoping that mine will kick

00:18:25.050 --> 00:18:26.930
in soon. / Not quite yet. / A bit late

00:18:26.930 --> 00:18:28.810
you know? / Yeah I think they're in the

00:18:28.810 --> 00:18:30.760
mail but you know the mail's been slow lately.

00:18:30.760 --> 00:18:32.971
It has. We'll just keep blaming it on the

00:18:32.971 --> 00:18:36.593
pandemic. It's fine. It's fine. So that

00:18:36.593 --> 00:18:38.373
diagnosis was actually pretty

00:18:38.373 --> 00:18:39.903
straightforward because it was

00:18:39.903 --> 00:18:42.442
very much, "oh we ran your DNA, cool

00:18:42.442 --> 00:18:44.547
you've got this" There we go.

00:18:44.547 --> 00:18:47.670
But the EDS was a much harder

00:18:47.670 --> 00:18:50.116
diagnosis and funny enough,

00:18:50.120 --> 00:18:51.800
actually came from YouTube

00:18:51.800 --> 00:18:53.324
and my subscribers.

00:18:53.903 --> 00:18:56.483
So I was diagnosed with a thing called

00:18:56.483 --> 00:19:00.163
mixed connective tissue disorder. Which

00:19:00.163 --> 00:19:03.023
is also about being hyper-mobile

00:19:03.023 --> 00:19:05.349
and having collagen that is kind of

00:19:05.349 --> 00:19:06.700
too flexible and

00:19:06.700 --> 00:19:10.226
it also affects your internal organs, but

00:19:10.526 --> 00:19:12.650
there were parts of it that

00:19:12.675 --> 00:19:14.755
just didn't- i just didn't fit?

00:19:14.755 --> 00:19:16.815
I didn't like tick like all of the boxes?

00:19:16.815 --> 00:19:19.182
I ticked quite a few of them and

00:19:19.182 --> 00:19:20.903
my doctor was like, "Ah, well.

00:19:20.903 --> 00:19:22.912
I don't know, maybe it's cause you've got

00:19:22.912 --> 00:19:24.519
that other thing as well.

00:19:24.519 --> 00:19:25.948
And you know how doctors don't

00:19:25.948 --> 00:19:27.329
really talk to each other

00:19:27.329 --> 00:19:29.023
if it's not their specialty.

00:19:29.023 --> 00:19:30.612
They're like, "Oh, no, sorry.

00:19:30.612 --> 00:19:32.851
I'm very specifically an eye doctor

00:19:32.851 --> 00:19:36.101
so I don't talk to the brain doctor."

00:19:36.101 --> 00:19:37.885
Like, " Oh, thanks."

00:19:37.885 --> 00:19:39.675
But this is all one thing.

00:19:39.675 --> 00:19:41.441
It's all in- it's all in my head so

00:19:41.441 --> 00:19:43.399
if you could coordinate with each other?

00:19:43.399 --> 00:19:44.929
They're like, "Oh, no, no, no."

00:19:44.929 --> 00:19:46.869
Not my thing/It's also just one body.

00:19:46.869 --> 00:19:49.261
Yeah, yeah. One body. One human.

00:19:49.261 --> 00:19:51.287
All works. It's a system.

00:19:51.287 --> 00:19:52.287
And they're like,

00:19:52.287 --> 00:19:53.827
"No, oh no. Just this one thing"

00:19:53.827 --> 00:19:55.221
So they always just kind of

00:19:55.221 --> 00:19:56.748
chalked it up to that.

00:19:56.748 --> 00:19:58.273
That I had something else and

00:19:58.273 --> 00:20:00.073
therefore that's why I didn't really

00:20:00.073 --> 00:20:01.993
fit this profile and it was a bit weird

00:20:02.008 --> 00:20:04.678
and I talked about it on my YouTube channel

00:20:04.678 --> 00:20:06.058
I've got this and this

00:20:06.058 --> 00:20:08.030
but then in other videos I'd kind of

00:20:08.032 --> 00:20:09.660
talk about what I was struggling with

00:20:09.660 --> 00:20:11.570
and then say it's a bit hard because

00:20:11.570 --> 00:20:13.960
my doctor says: This doesn't fit the profile.

00:20:13.960 --> 00:20:15.870
And people in the comments were like:

00:20:15.870 --> 00:20:17.813
"That's probably because you have EDS Jessica."

00:20:17.813 --> 00:20:18.960
"Have you got checked?"

00:20:18.960 --> 00:20:20.220
"I think you've got EDS Jessica."

00:20:20.220 --> 00:20:21.660
"Pretty sure you've got EDS Jessica."

00:20:21.660 --> 00:20:22.720
"This is EDS."

00:20:22.720 --> 00:20:24.760
And I was like, is it?

00:20:24.760 --> 00:20:25.920
My goodness.

00:20:25.920 --> 00:20:28.230
So I went to my GP and said

00:20:28.230 --> 00:20:30.360
well I didn't say the internet says

00:20:30.360 --> 00:20:32.541
I have EDS. I was like:

00:20:32.541 --> 00:20:34.892
I just would like to be re-referred

00:20:34.892 --> 00:20:37.612
to rheumatology please.

00:20:37.612 --> 00:20:39.812
So they could maybe check to see

00:20:39.812 --> 00:20:41.482
whether I definitely have this thing

00:20:41.482 --> 00:20:42.732
that I was diagnosed with?

00:20:42.732 --> 00:20:44.883
Or maybe I have another thing.

00:20:44.883 --> 00:20:47.933
Ehlers-Danlos Syndrome? Heard of it?

00:20:47.933 --> 00:20:50.993
And my doctor: "Oh well that's not curable,

00:20:50.993 --> 00:20:52.773
so I'm not gonna refer you"

00:20:52.773 --> 00:20:53.613
What?!

00:20:54.569 --> 00:20:56.969
I was like... I'm sorry?

00:20:57.279 --> 00:20:59.389
Well we just shouldn't know if we have

00:20:59.389 --> 00:21:00.879
uncurable things.Obviously.

00:21:00.879 --> 00:21:02.269
What what what?!

00:21:02.269 --> 00:21:04.509
And he was like "Yeah they're very busy

00:21:04.509 --> 00:21:08.309
So, I'm not gonna refer you for them."

00:21:08.309 --> 00:21:09.989
Ok! Right!

00:21:09.989 --> 00:21:12.619
So I ended up having to go get a

00:21:12.619 --> 00:21:13.769
private diagnosis.

00:21:13.769 --> 00:21:17.073
Which, I live in England. We have the NHS.

00:21:17.073 --> 00:21:19.993
Doing private healthcare is like

00:21:19.993 --> 00:21:22.623
a weirdly out there type of thing.

00:21:22.623 --> 00:21:24.153
We don't do that much.

00:21:24.153 --> 00:21:27.070
So, I went to get a private diagnosis.

00:21:27.070 --> 00:21:29.320
Saw a private rheumatologist who was like:

00:21:29.327 --> 00:21:31.397
"Yeah, you've obviously got EDS."

00:21:31.397 --> 00:21:33.327
I was like, "Oh!

00:21:33.327 --> 00:21:35.717
Ok, well the internet was correct."

00:21:35.717 --> 00:21:38.443
See? Sometimes you can listen to the internet.

00:21:38.443 --> 00:21:42.173
Ok, that's how my Youtube subscribers

00:21:42.173 --> 00:21:44.613
wonderfully diagnosed me.

00:21:44.613 --> 00:21:47.930
What a story. I love that for you.

00:21:47.930 --> 00:21:50.477
Now do your two diagnoses

00:21:50.477 --> 00:21:51.952
often go hand-in-hand

00:21:51.952 --> 00:21:54.834
or are they rarely seen together?

00:21:54.834 --> 00:21:58.834
According to every doctor I have ever met,

00:21:58.834 --> 00:22:02.564
I am the only case of these two things

00:22:02.564 --> 00:22:05.804
interracting. Because, HNPP is quite

00:22:05.804 --> 00:22:08.706
a rare neurological condition.

00:22:08.706 --> 00:22:11.826
And it comes from my father.

00:22:11.826 --> 00:22:14.806
And my hyper mobility comes from my mother.

00:22:14.806 --> 00:22:18.806
So, I'm just blessed.

00:22:18.806 --> 00:22:20.036
What a combo.

00:22:20.036 --> 00:22:21.307
What a combo.

00:22:21.307 --> 00:22:23.567
Well, it's made quite a wonderful woman.

00:22:23.567 --> 00:22:26.007
So, I'm glad we have you.

00:22:26.007 --> 00:22:27.437
I'm not glad for your pain.

00:22:27.437 --> 00:22:29.327
I'm not glad for what you had to go

00:22:29.327 --> 00:22:30.497
through to get here.

00:22:30.497 --> 00:22:32.627
But I am glad our community has you,

00:22:32.627 --> 00:22:34.464
because we need more people like you.

00:22:34.464 --> 00:22:36.094
With such a powerful voice and

00:22:36.094 --> 00:22:36.944
a powerful story.

00:22:36.944 --> 00:22:39.114
As you've said, you've come out of the

00:22:39.114 --> 00:22:39.831
closet twice.

00:22:39.831 --> 00:22:43.831
As a disabled woman as well as being gay.

00:22:43.831 --> 00:22:45.930
Can you share some of that journey

00:22:45.930 --> 00:22:48.282
of intersectionality. Coming to terms

00:22:48.282 --> 00:22:51.002
with two different, being apart of two

00:22:51.002 --> 00:22:53.146
different minority communities.

00:22:53.146 --> 00:22:55.369
So I think I have a very different story

00:22:55.369 --> 00:22:57.529
and a very different journey to most

00:22:57.529 --> 00:22:59.169
young LGBTQ+ people.

00:22:59.169 --> 00:23:01.759
And I think in a way, that my disability

00:23:01.759 --> 00:23:03.460
really does play into that.

00:23:03.460 --> 00:23:06.850
So, I don't have a coming out story

00:23:06.850 --> 00:23:09.640
because I never came out to my parents.

00:23:09.640 --> 00:23:11.530
I was just always kind of like:

00:23:11.530 --> 00:23:14.050
"This is me. This is who I like.

00:23:14.050 --> 00:23:16.206
I really like this girl in the X-Men and

00:23:16.206 --> 00:23:18.216
we're going to date and I

00:23:18.216 --> 00:23:19.496
will marry her one day."

00:23:19.496 --> 00:23:21.242
And my parents were like:

00:23:21.242 --> 00:23:24.066
"She's animated but you do you."

00:23:24.066 --> 00:23:25.046
I'm like: Yeah!

00:23:25.046 --> 00:23:28.496
Um, I think partly my parents

00:23:28.496 --> 00:23:29.236
are Quakers.

00:23:29.236 --> 00:23:32.086
So they never put any expectation

00:23:32.086 --> 00:23:34.656
on me that I had to be a certain way.

00:23:34.656 --> 00:23:36.356
They never said, you know,

00:23:36.356 --> 00:23:38.336
"When you grow up and get a husband."

00:23:38.336 --> 00:23:39.557
It was always just:

00:23:39.557 --> 00:23:41.597
"When you grow up and if you choose

00:23:41.597 --> 00:23:42.667
to get married."

00:23:42.667 --> 00:23:43.763
I'm like, yeah ok.

00:23:43.763 --> 00:23:45.673
So it always felt very open and

00:23:45.673 --> 00:23:47.726
like I could kinda share that part of me.

00:23:47.726 --> 00:23:52.376
But, being disabled and having that with me

00:23:52.376 --> 00:23:54.554
as I was growing up.

00:23:54.554 --> 00:23:56.970
Not knowing that I was disabled but knowing

00:23:56.970 --> 00:23:58.824
that there was something about my body

00:23:58.824 --> 00:24:02.824
that was wrong, that other people weren't listening to.

00:24:02.824 --> 00:24:04.082
Weren't believing in.

00:24:04.082 --> 00:24:06.422
Because, my god, when you're a child

00:24:06.422 --> 00:24:08.282
and you try to tell adults things,

00:24:08.282 --> 00:24:10.382
it can be very difficult to explain

00:24:10.382 --> 00:24:12.932
medical conditions because people don't

00:24:12.932 --> 00:24:15.112
tend to believe children about these kinds

00:24:15.112 --> 00:24:16.372
of things. When you say

00:24:16.372 --> 00:24:17.772
you have a headache, they're like,

00:24:17.772 --> 00:24:20.102
"Yeah, but you know. Not really.

00:24:20.102 --> 00:24:21.062
Cause you're a kid."

00:24:21.062 --> 00:24:21.762
Like, no no.

00:24:21.762 --> 00:24:23.372
Genuinely, I'm having a migraine

00:24:23.372 --> 00:24:24.432
right now. I realize

00:24:24.432 --> 00:24:26.244
I'm a child but I'm having a migraine.

00:24:26.244 --> 00:24:29.984
And having that to kinda battle agaisnt

00:24:29.984 --> 00:24:33.174
and deal with made my sexuality

00:24:33.174 --> 00:24:36.354
almost a...it almost became

00:24:36.354 --> 00:24:38.012
something that I, of course,

00:24:38.012 --> 00:24:39.782
I would just accept it.

00:24:39.782 --> 00:24:41.732
Because I had something that was weighing

00:24:41.732 --> 00:24:43.992
quite heavily on me and my

00:24:43.992 --> 00:24:46.462
sexuality only brought me joy.

00:24:46.462 --> 00:24:49.112
It was only, I mean I'm not saying it

00:24:49.112 --> 00:24:50.442
brought me joy in fact like,

00:24:50.442 --> 00:24:51.522
I had lots of girlfriends.

00:24:51.522 --> 00:24:54.162
Because I really didn't, at all.

00:24:54.162 --> 00:24:56.412
But it brought me joy in that,

00:24:56.412 --> 00:24:59.362
I would have these beautiful really

00:24:59.362 --> 00:25:02.922
close relationships that I would

00:25:02.922 --> 00:25:05.175
have this massive crush on an actress

00:25:05.175 --> 00:25:07.905
and I get to like, watch her and things.

00:25:07.905 --> 00:25:10.265
and feel happy and I was like yeah!

00:25:10.265 --> 00:25:12.145
This being gay thing is great!

00:25:12.145 --> 00:25:12.965
I love it!

00:25:12.965 --> 00:25:14.885
But then the body.

00:25:14.885 --> 00:25:17.695
I'm like ugh, my body is useless.

00:25:17.695 --> 00:25:19.115
But at least I'm gay.

00:25:19.115 --> 00:25:20.835
So I've got that going for me.

00:25:20.835 --> 00:25:22.715
Yeah, it became almost a saving grace

00:25:22.715 --> 00:25:24.205
throughout my teenage years.

00:25:24.205 --> 00:25:27.205
Struggling against a body that didn't work

00:25:27.205 --> 00:25:29.605
and being told that it should.

00:25:29.605 --> 00:25:31.763
Being told that I was incorrect on something.

00:25:31.763 --> 00:25:33.763
And then having this thing that I was

00:25:33.763 --> 00:25:36.293
really sure of and really happy with and

00:25:36.293 --> 00:25:37.583
quite passionate about.

00:25:37.583 --> 00:25:40.303
So, it's definetly a different coming out

00:25:40.303 --> 00:25:42.523
to most LGBTQ+ young people

00:25:42.523 --> 00:25:45.873
but I, in a way, hope that it's something

00:25:45.873 --> 00:25:48.538
that we get more of going forwards.

00:25:48.538 --> 00:25:50.758
That it's more accepted.

00:25:50.758 --> 00:25:52.056
That children are able to

00:25:52.056 --> 00:25:53.298
just speak their mind.

00:25:53.298 --> 00:25:55.268
That people can support them.

00:25:55.268 --> 00:25:57.644
That's a really beautiful story. Honestly.

00:25:57.644 --> 00:25:59.820
You know a lot of my friends growing up

00:25:59.820 --> 00:26:02.790
were LGBTQ+ because I was the only

00:26:02.790 --> 00:26:06.350
disabled kid and they were the only gay kid,

00:26:06.350 --> 00:26:10.350
or the only trans kid, and so you know we

00:26:10.350 --> 00:26:11.845
just were like, "Hey!

00:26:11.845 --> 00:26:14.231
You're also different and not like the other

00:26:14.231 --> 00:26:16.745
kids in class. We should be friends."

00:26:16.745 --> 00:26:20.745
And so I really like hearing your story

00:26:20.745 --> 00:26:23.775
because it is very different than what

00:26:23.775 --> 00:26:26.328
a lot of my LGBTQ+ friends went through.

00:26:26.328 --> 00:26:28.980
There's actually a really big crossover

00:26:28.980 --> 00:26:30.260
between the disabled community

00:26:30.260 --> 00:26:32.259
and the LGBTQ+ community.

00:26:32.691 --> 00:26:35.645
I think, correct statistic, is that

00:26:35.645 --> 00:26:38.628
one third of people who are LGBTQ+

00:26:38.628 --> 00:26:40.117
also have a disability.

00:26:40.117 --> 00:26:43.149
And- which is a really interesting statistic.

00:26:43.149 --> 00:26:45.490
But I think a lot of it has to do with

00:26:45.490 --> 00:26:47.719
the fact that you have to come out

00:26:47.719 --> 00:26:50.519
about one thing, so you come out about

00:26:50.519 --> 00:26:51.869
something else. Like you're more

00:26:51.869 --> 00:26:54.479
comfortable with the other thing and

00:26:54.479 --> 00:26:55.779
you're like, "Look, let me just

00:26:55.779 --> 00:26:57.489
put this out here. You can all clearly see

00:26:57.489 --> 00:27:00.318
that I am disabled, so while I'm here,

00:27:00.318 --> 00:27:01.717
I'm gay too."

00:27:01.717 --> 00:27:05.717
Well yeah! It's like you already have this

00:27:05.717 --> 00:27:07.517
big thing to accept about yourself.

00:27:07.517 --> 00:27:09.640
You already have this big target on your

00:27:09.640 --> 00:27:12.160
back or you know a community runt

00:27:12.160 --> 00:27:15.210
so you're like, ok well, I've got one

00:27:15.210 --> 00:27:16.693
thing here's the other.

00:27:16.693 --> 00:27:19.643
Now I can see that statistic being true

00:27:19.643 --> 00:27:21.643
honestly because, as I said, so many of my

00:27:21.643 --> 00:27:24.209
friends are LGBTQ+ and I'm disabled

00:27:24.209 --> 00:27:26.637
so I kinda do have a lot of friends in

00:27:26.637 --> 00:27:28.704
both worlds and I see a lot of that

00:27:28.704 --> 00:27:30.894
crossover. I see that I've- now, at this point

00:27:30.894 --> 00:27:32.569
in my life for both communities.

00:27:32.569 --> 00:27:35.045
Met many people who do identify as being

00:27:35.045 --> 00:27:35.955
a part of both.

00:27:35.955 --> 00:27:38.085
When you met your wife did she know

00:27:38.085 --> 00:27:38.925
sign language?

00:27:38.925 --> 00:27:40.824
No! (laughs)

00:27:40.824 --> 00:27:44.054
She didn't. In fact, when I first met my wife,

00:27:44.054 --> 00:27:47.164
on our first date, I hadn't told her

00:27:47.164 --> 00:27:50.090
anything about my disabilities.

00:27:50.090 --> 00:27:54.090
I kind of wanted to see whether she

00:27:54.090 --> 00:27:57.446
even liked me because I'd been on so many dates

00:27:57.446 --> 00:27:59.838
where you spent so much time explaining

00:27:59.838 --> 00:28:02.664
what's up. / Yup! / and then you never hear from

00:28:02.664 --> 00:28:04.864
them again and ugh, it's such a waste of

00:28:04.864 --> 00:28:06.604
my time!/ Very much agree!

00:28:06.604 --> 00:28:07.794
But then you have to balance it with

00:28:07.794 --> 00:28:10.154
do I want to go on a number of dates

00:28:10.154 --> 00:28:11.804
or do I want to spend a whole month

00:28:11.804 --> 00:28:13.844
talking to someone and then I tell them

00:28:13.844 --> 00:28:16.164
and they're like, "Oh, I can't redo that?"

00:28:16.164 --> 00:28:18.542
And then you're like, "Ugh! Well I

00:28:18.575 --> 00:28:20.452
just wasted my month of talking to you.

00:28:20.452 --> 00:28:21.852
What a waste of time!"

00:28:21.852 --> 00:28:23.784
So when she first came up

00:28:23.784 --> 00:28:25.579
she actually thought that I was wearing a

00:28:25.579 --> 00:28:27.709
bluetooth device and was working.

00:28:27.709 --> 00:28:29.498
Cause she saw my hearing aids and was like

00:28:29.498 --> 00:28:32.278
"Oh, she's working hard! Continuing on

00:28:32.278 --> 00:28:33.848
with her bluetooth device."

00:28:33.848 --> 00:28:35.538
And I think to start with, thought I was

00:28:35.538 --> 00:28:37.915
a bit rude that I hadn't removed

00:28:37.915 --> 00:28:39.762
my headphones. I was like:

00:28:39.762 --> 00:28:41.571
"Umm yeah should probably tell you

00:28:41.571 --> 00:28:43.501
that I'm deaf."

00:28:43.501 --> 00:28:45.821
And so yeah she didn't know anything.

00:28:45.821 --> 00:28:49.821
But she was very blasé on our first date

00:28:49.821 --> 00:28:51.853
I didn't tell her, you know,

00:28:51.853 --> 00:28:53.760
"This is me. I have this disability.

00:28:53.760 --> 00:28:55.170
This is how it affects me."

00:28:55.170 --> 00:28:59.170
She was like, "Ok. Mmm. Do you still like

00:28:59.170 --> 00:29:01.225
to go for walks in the woods?"

00:29:01.225 --> 00:29:01.765
"I do."

00:29:01.765 --> 00:29:04.085
"Do you still like national trust properties?"

00:29:04.085 --> 00:29:04.675
"I do."

00:29:04.675 --> 00:29:07.926
And it was just like the basic things that

00:29:07.926 --> 00:29:09.786
she needed to know like, "Are you good

00:29:09.786 --> 00:29:10.506
around trees?"

00:29:10.506 --> 00:29:12.780
"I love a tree. It's wonderful."

00:29:12.780 --> 00:29:14.880
"You good around old properties?"

00:29:14.880 --> 00:29:16.480
"Love an old property."

00:29:16.480 --> 00:29:17.138
"Excellent"

00:29:17.138 --> 00:29:19.328
Basics of our marriage, that.

00:29:19.328 --> 00:29:20.478
We're country girls at heart.

00:29:20.478 --> 00:29:23.507
That is actually exactly how a first date

00:29:23.507 --> 00:29:25.488
with a disabled person should go.

00:29:25.488 --> 00:29:29.180
Word to anybody who ever goes on a date

00:29:29.180 --> 00:29:30.915
with a disabled person.

00:29:30.915 --> 00:29:33.134
That's how you know it's a good match:

00:29:33.134 --> 00:29:34.724
If you're able to be blasé and focus on

00:29:34.724 --> 00:29:36.754
the actual parts of them that are human

00:29:36.754 --> 00:29:38.314
outside of disability. Key!

00:29:38.314 --> 00:29:40.214
You will win a lot of points with us.

00:29:40.214 --> 00:29:40.734
(giggles)

00:29:40.734 --> 00:29:42.754
You mentioned something that like

00:29:42.754 --> 00:29:44.854
really hit me and maybe we can talk about

00:29:44.854 --> 00:29:46.574
it more on the video that we do on your

00:29:46.574 --> 00:29:48.274
channel cause this video is already

00:29:48.274 --> 00:29:51.539
forever long but it like almost got me

00:29:51.539 --> 00:29:54.014
like choked up because when you said it

00:29:54.014 --> 00:29:55.839
it resonated with me so hard.

00:29:55.839 --> 00:29:58.425
And that is: You look more capable than

00:29:58.425 --> 00:30:00.045
you sometimes are.

00:30:00.045 --> 00:30:01.075
Or you present more

00:30:01.075 --> 00:30:02.165
able-bodied than you are.

00:30:02.165 --> 00:30:04.005
And I think that is something

00:30:04.005 --> 00:30:06.065
that I have lived with my whole life.

00:30:06.065 --> 00:30:08.235
It is really challenging.

00:30:08.235 --> 00:30:09.995
It has its perks,

00:30:09.995 --> 00:30:11.656
It has its benefits.

00:30:11.656 --> 00:30:13.199
You know there are times when

00:30:13.199 --> 00:30:15.089
I can just like seamlessly

00:30:15.089 --> 00:30:16.359
fit into a group

00:30:16.359 --> 00:30:18.379
and not be discriminated against

00:30:18.379 --> 00:30:19.379
for a minute

00:30:19.379 --> 00:30:20.809
because nobody knows.

00:30:20.809 --> 00:30:24.349
But also, you know I remember being

00:30:24.349 --> 00:30:25.629
in middle school

00:30:25.629 --> 00:30:29.629
and actively losing most of my sight.

00:30:29.629 --> 00:30:31.799
I had another blind student at the school

00:30:31.799 --> 00:30:33.409
who was fully blind from birth.

00:30:33.409 --> 00:30:35.885
And the teacher turns to me and goes,

00:30:35.885 --> 00:30:36.705
"Molly!

00:30:36.705 --> 00:30:38.825
Help him. He's blind, he can't see it."

00:30:38.825 --> 00:30:39.915
And I was like,

00:30:39.915 --> 00:30:41.765
"No, no. I too am blind

00:30:41.765 --> 00:30:43.642
with guide dog. I don't know

00:30:43.642 --> 00:30:45.897
what you're not getting. I too cannot

00:30:45.897 --> 00:30:46.997
see the thing."

00:30:46.997 --> 00:30:48.717
And I feel like that's like the

00:30:48.717 --> 00:30:50.966
perfect example of something I faced

00:30:50.966 --> 00:30:52.096
almost daily.

00:30:52.096 --> 00:30:54.276
Is just like and I- I just recently

00:30:54.276 --> 00:30:56.546
watched your, you did an ableism

00:30:56.546 --> 00:30:58.226
video, which had me laughing

00:30:58.226 --> 00:31:00.607
out loud and again one of the ones

00:31:00.607 --> 00:31:02.735
you said, well many of the ones

00:31:02.735 --> 00:31:03.716
you said resonated

00:31:03.716 --> 00:31:05.606
but like, well at least you look good.

00:31:05.606 --> 00:31:07.536
And it's like a I get that all the time.

00:31:07.536 --> 00:31:08.666
Like, "Ugh I can't see"

00:31:08.666 --> 00:31:10.636
"Oh, at least your eyes are beautiful."

00:31:10.636 --> 00:31:11.396
And I'm like...

00:31:11.396 --> 00:31:12.536
Wonderful, thanks.

00:31:12.738 --> 00:31:13.829
Thanks.

00:31:13.868 --> 00:31:15.299
That really helps.

00:31:15.299 --> 00:31:16.579
And I- yeah

00:31:16.579 --> 00:31:18.699
It is, it can be very challenging

00:31:19.844 --> 00:31:22.135
and even withing your own

00:31:22.135 --> 00:31:23.649
disability community, I don't know

00:31:23.649 --> 00:31:25.379
if you find this you know

00:31:25.379 --> 00:31:28.089
with a part of- because you identify

00:31:28.089 --> 00:31:29.769
with so many different groups

00:31:29.769 --> 00:31:31.419
of disability, I don't know if you

00:31:31.419 --> 00:31:33.449
find this in any of your kind of subsections

00:31:33.449 --> 00:31:35.149
of the community, but

00:31:35.149 --> 00:31:36.349
if you don't do things

00:31:36.349 --> 00:31:37.569
the way a lot of them do

00:31:37.569 --> 00:31:38.809
because you're accommodating

00:31:38.809 --> 00:31:40.699
other aspects of your disability

00:31:40.699 --> 00:31:42.039
you're judged for it.

00:31:42.039 --> 00:31:44.857
And I feel like because

00:31:44.857 --> 00:31:47.751
being blind is the part of my disability that

00:31:47.751 --> 00:31:49.357
gets focused on the most,

00:31:49.357 --> 00:31:51.107
people assume I should accommodate it

00:31:51.107 --> 00:31:52.828
the way all blind people do.

00:31:52.828 --> 00:31:54.868
Or the way a lot of the community does

00:31:54.868 --> 00:31:56.618
And I'm like, "Well,

00:31:56.618 --> 00:31:58.128
there's also other layers

00:31:58.128 --> 00:31:59.358
to my disability.

00:31:59.358 --> 00:32:01.937
Like, living with PTSD

00:32:01.937 --> 00:32:03.946
and really bad generalized anxiety

00:32:03.946 --> 00:32:06.033
is disabling for me at times.

00:32:06.033 --> 00:32:07.863
And so that's a very real

00:32:07.863 --> 00:32:09.749
part of my disability that I have to

00:32:09.749 --> 00:32:12.379
accommodate separate to my blindness.

00:32:12.379 --> 00:32:15.693
Or like I'm just like very sensitive

00:32:15.693 --> 00:32:17.934
I have a very sensitive digestive system

00:32:17.934 --> 00:32:19.583
I've dealt with irritable bowel syndrome

00:32:19.583 --> 00:32:21.334
my whole life, so it's

00:32:21.334 --> 00:32:23.570
really hard for me to eat sometimes.

00:32:23.570 --> 00:32:25.050
And for me to take-

00:32:25.050 --> 00:32:26.920
I'm very sensitive to medications. Those

00:32:26.920 --> 00:32:28.650
are other parts of my human body

00:32:28.650 --> 00:32:30.453
that I need to accommodate.

00:32:30.453 --> 00:32:32.200
And I have other parts of my

00:32:32.200 --> 00:32:35.141
disability that I don't talk about on the internet

00:32:35.141 --> 00:32:37.510
or that I don't expose to the world.

00:32:37.510 --> 00:32:37.760
You know, things that I'm affected by

00:32:37.760 --> 00:32:41.510
Or you know, things that I'm affected by

99:59:59.999 --> 99:59:59.999
that I don't talk about.

99:59:59.999 --> 99:59:59.999