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Being Deaf & Being Blind - Chatting Disability Stuff w/ Jessica Kellgren-Fozard!

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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"
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    and it's like everything is shown
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    ... except disability.
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    And we're like "Hey now,
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    "Hi"
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    "Where are we at the table"
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    I think so many different
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    brands and companies
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    think that they can kind of get away
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    doing the absolute least
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    when it comes to disability representation
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    Whether that be in adverts
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    or actually making things accessible.
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    So many of them think
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    "Oh, a person in a wheelchair
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    and we're done.
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    That's it we've represented every
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    disabled person,
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    we've covered everyone's needs, excellent.
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    Of course our brand is friendly to the
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    disabled community, we have a ramp!"
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    And you're like, "Uh-huh, I see.
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    And how are you helping every other
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    disabled person?"
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    Mhm, mhm.
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    Like, people who use wheelchairs
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    actually make up quite a small part
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    of the disability population as a whole.
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    And, people just cannot get this through
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    their heads and, of course, having
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    the disability symbol be a wheelchair,
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    obviously a very visual way to get that
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    across very neatly, but it does tend
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    to make people forget everyone else.
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    Yes and I- I don't know if this has been
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    happening in England but over the
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    last number of years I've been seeing
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    in North America one change is
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    certain places are adding other stickers
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    that represent other disabilities.
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    Which is nice because for example on
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    public transit, like a bus, I need to
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    sit down, it's not a question I need to
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    be able to sit. Because balance is a
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    combination, as I'm sure you know as
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    deaf woman, of ears and eyes.
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    And so my balance, not being able to see
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    is quite off. And so standing on a moving
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    vehicle, even if I'm holding a pole, is
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    just not really a thing for me. So I need
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    sit. And so when I get on a bus with my
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    guide dog, people used to not register
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    that I was somebody who they needed to
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    get out of the disability seating for.
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    Um, so they would just continue to sit
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    there. But now they've added these
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    stickers where it's like a man with a cane
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    a person in a wheelchair and there's
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    somebody with a walker and I'm like
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    Thank you for showing multiple visuals
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    of what somebody who might need to sit in
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    disability seating could present as.
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    Yeah, I've definitely seen in the last few
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    years that kind of not all disabilities
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    are visible stickers on a lot more things
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    in public places. And it's so good to see
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    because I remember when I very first-
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    so I kind of grew up with a disability
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    but it wasn't, well I'm not going to say
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    noticed, but it wasn't diagnosed until
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    I was 17. And then when I was 17 and I
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    suddenly had this big health crisis and
  • 12:44 - 12:47
    very much did need to use, you know,
  • 12:47 - 12:49
    disabled toilets and I need to have
  • 12:49 - 12:52
    access to things. I had a lot of issues
  • 12:52 - 12:55
    with this. Because people were constantly
  • 12:55 - 12:57
    trying to stop me from using things
  • 12:57 - 13:00
    saying "Oh that's not for you that's for
  • 13:00 - 13:02
    disabled people." And I'm like I mean
  • 13:02 - 13:05
    I am, I don't know what I can do to-
  • 13:05 - 13:08
    to make this more obvious to people, that
  • 13:08 - 13:10
    I'm really struggling and things would
  • 13:10 - 13:12
    help me like this. So it's, it is really
  • 13:12 - 13:15
    lovely to see now. I worry less about
  • 13:15 - 13:17
    using disabled toilets in public
  • 13:17 - 13:20
    when they have a "Not all disabilities
  • 13:20 - 13:22
    are visible" sticker on them. Because the
  • 13:22 - 13:25
    dirty jokes I've received coming out of a
  • 13:25 - 13:28
    disabled toilet on two feet is like, ugh.
  • 13:28 - 13:30
    Well I think part of the problem with
  • 13:30 - 13:32
    that too is how many able-bodied people
  • 13:32 - 13:35
    just do use the toilet for people with a
  • 13:35 - 13:35
    disability?
  • 13:37 - 13:39
    Um, so many, so many able bodied people
  • 13:39 - 13:43
    do use different facilities that are
  • 13:43 - 13:46
    accessible and designed for people who
  • 13:46 - 13:48
    actually need them due to a disability.
  • 13:48 - 13:50
    And, so now I think when people see
  • 13:50 - 13:53
    somebody presenting as able-bodied, they
  • 13:53 - 13:55
    just kind of assume they're able-bodied
  • 13:55 - 13:57
    because of how many able-bodied people do
  • 13:57 - 13:58
    take advantage of having a little extra
  • 13:58 - 14:01
    wiggle room in the stall for when they're
  • 14:01 - 14:03
    pooping and they don't want anyone to hear
  • 14:03 - 14:05
    it and I'm like that's not what, that's
  • 14:05 - 14:07
    not what that was for. It's not for all
  • 14:07 - 14:09
    you extra shopping bags, ma'am.
  • 14:09 - 14:11
    It's for people who require either the bar
  • 14:11 - 14:14
    for support, who require the extra room
  • 14:14 - 14:16
    for a support worker, for a service
  • 14:16 - 14:19
    animal, for a mobility device. Like
  • 14:19 - 14:22
    there's many reasons that that exists.
  • 14:22 - 14:23
    But your extra shopping bags or like
  • 14:23 - 14:26
    extra room for popping, isn't what it was
  • 14:26 - 14:27
    for.
  • 14:27 - 14:29
    The unfortunate thing as well is that
  • 14:29 - 14:31
    so many places will put their baby
  • 14:31 - 14:34
    changing facilities into the disabled
  • 14:34 - 14:37
    toilets. And it's not like a special
  • 14:37 - 14:41
    um, weighted table it means that you can
  • 14:41 - 14:44
    anyone larger than a baby. It's literally
  • 14:44 - 14:46
    just there because they've lumped in
  • 14:46 - 14:49
    parents, disabled people, sure. You can
  • 14:49 - 14:51
    use the same facilities, it's fine.
  • 14:51 - 14:53
    You know, you'll never need more than one
  • 14:53 - 14:55
    person using it at the same time. And I've
  • 14:55 - 14:58
    had things where I have walked out of a
  • 14:58 - 15:01
    disabled toilet and a mother rammed her
  • 15:01 - 15:05
    buggy into my legs and was like "Oh, not
  • 15:05 - 15:08
    disabled or with a child then." And I was
  • 15:08 - 15:10
    like uhhhh... And at the time-
  • 15:10 - 15:12
    Actually very disabled thank you!
  • 15:12 - 15:15
    And at the time I mean I was a teenager
  • 15:15 - 15:19
    and I was too upset to say anything or do
  • 15:19 - 15:22
    anything. I'd only just been diagnosed
  • 15:22 - 15:25
    and I was like, oh this label of disabled
  • 15:25 - 15:27
    do I get to use this? Do I have the right?
  • 15:27 - 15:29
    Can I stand up to someone and actually
  • 15:29 - 15:31
    say "Actually I am disabled?" And it
  • 15:31 - 15:35
    really upset me inside and it was so
  • 15:35 - 15:37
    heart wrenching. Despite at the time I
  • 15:37 - 15:40
    had two paralyzed arms. Like, both of my
  • 15:40 - 15:43
    arms were paralyzed and I needed to use
  • 15:43 - 15:45
    the disabled toilet because it was the
  • 15:45 - 15:48
    only way that I could go to the loo.
  • 15:48 - 15:51
    Um, but for ages after that I would not
  • 15:51 - 15:53
    without someone else around.
  • 15:53 - 15:55
    You know, you've mentioned, I've mentioned
  • 15:55 - 15:57
    that you're deaf, and I think there's a
  • 15:57 - 16:00
    a lot of stereotypes that come with that.
  • 16:00 - 16:02
    Just like blindness and people are like
  • 16:02 - 16:05
    "Blindness, you can't see anything," a lot
  • 16:05 - 16:07
    of people think being deaf you can't hear
  • 16:07 - 16:10
    anything. Being deaf you can't speak.
  • 16:10 - 16:12
    There's a lot of things like that and so
  • 16:12 - 16:14
    And then you've mentioned you know your
  • 16:14 - 16:16
    diagnosis or being disabled as a child
  • 16:16 - 16:18
    and all of these things, but we haven't
  • 16:18 - 16:20
    actually like dove into it. So for those
  • 16:20 - 16:22
    of my followers who have never heard your
  • 16:22 - 16:24
    story could you kind of give a synopsis of
  • 16:24 - 16:26
    like, if you're comfortable, what your
  • 16:26 - 16:29
    diagnosis is? I know that uh, things like
  • 16:29 - 16:31
    EDS can be very hard to diagnose again,
  • 16:31 - 16:34
    an invisible disability so what was your
  • 16:34 - 16:37
    diagnosis journey to getting all of- all
  • 16:37 - 16:38
    of these diagnoses?
  • 16:38 - 16:42
    Well, with the NHPP, uh, the diagnosis
  • 16:42 - 16:45
    was sort of straight forward in that it
  • 16:45 - 16:48
    I'd always struggled with my hands and
  • 16:48 - 16:51
    feet as a child. And just being kind of
  • 16:51 - 16:53
    what was called "clumsy" because they
  • 16:53 - 16:55
    didn't realize that it was because I
  • 16:55 - 16:58
    couldn't feel what I was touching. And
  • 16:58 - 17:00
    you don't realize things because you
  • 17:00 - 17:02
    assume as a child that everyone else is
  • 17:02 - 17:04
    like this. So I can't feel the front of
  • 17:04 - 17:08
    my calves because when I was a baby I
  • 17:08 - 17:11
    crawled around on them and I've never been
  • 17:11 - 17:13
    able to feel my knees. And I just assumed
  • 17:13 - 17:15
    no one can feel their knees, right? Like
  • 17:15 - 17:17
    you can't feel the skin on your knees
  • 17:17 - 17:20
    that's weird, who can do that? Um, but I
  • 17:20 - 17:22
    thought this was totally normal til I hit
  • 17:22 - 17:27
    17 and I was in an exam and I lent on my
  • 17:27 - 17:30
    elbow for about twenty minutes whilst I
  • 17:30 - 17:32
    writing. And I got a crick in my neck and
  • 17:32 - 17:36
    woke up the next morning having paralyzed
  • 17:36 - 17:38
    my arms. Because this crick in my neck had
  • 17:38 - 17:41
    been so bad, I'm not helped by the stress
  • 17:41 - 17:43
    of this exam and the fact I'd been on
  • 17:43 - 17:45
    crutches for like six months before this
  • 17:45 - 17:50
    point. Um, and I had paralyzed both of my
  • 17:50 - 17:52
    arms and they stayed that way for a year
  • 17:52 - 17:55
    and a half, which was very difficult. And
  • 17:55 - 17:57
    I got rushed to hospital of course and
  • 17:57 - 17:59
    they were trying to find out what was
  • 17:59 - 18:01
    wrong with me, it could have been a stroke
  • 18:01 - 18:03
    it could have been meningitis. And they
  • 18:03 - 18:05
    ran all sorts of tests, did all sorts of
  • 18:05 - 18:07
    things and then ran a genetic screening
  • 18:07 - 18:09
    and were like "Oh, ah, you're actually
  • 18:09 - 18:13
    missing a gene." I was like, oh right
  • 18:13 - 18:17
    goodness. So I'm a mutant, which is great.
  • 18:17 - 18:19
    Still waiting for my X-men powers.
  • 18:19 - 18:21
    Fellow mutant here so I'm with you.
  • 18:21 - 18:23
    There we go, see? Have you got your X-men
  • 18:23 - 18:25
    powers yet? I'm hoping that mine will kick
  • 18:25 - 18:27
    in soon. / Not quite yet. / A bit late
  • 18:27 - 18:29
    you know? / Yeah I think they're in the
  • 18:29 - 18:31
    mail but you know the mail's been slow lately.
  • 18:31 - 18:33
    It has. We'll just keep blaming it on the
  • 18:33 - 18:37
    pandemic. It's fine. It's fine. So that
  • 18:37 - 18:38
    diagnosis was actually pretty
  • 18:38 - 18:40
    straightforward because it was
  • 18:40 - 18:42
    very much, "oh we ran your DNA, cool
  • 18:42 - 18:45
    you've got this" There we go.
  • 18:45 - 18:48
    But the EDS was a much harder
  • 18:48 - 18:50
    diagnosis and funny enough,
  • 18:50 - 18:52
    actually came from YouTube
  • 18:52 - 18:53
    and my subscribers.
  • 18:54 - 18:56
    So I was diagnosed with a thing called
  • 18:56 - 19:00
    mixed connective tissue disorder. Which
  • 19:00 - 19:03
    is also about being hyper-mobile
  • 19:03 - 19:05
    and having collagen that is kind of
  • 19:05 - 19:07
    too flexible and
  • 19:07 - 19:10
    it also affects your internal organs, but
  • 19:11 - 19:13
    there were parts of it that
  • 19:13 - 19:15
    just didn't- i just didn't fit?
  • 19:15 - 19:17
    I didn't like tick like all of the boxes?
  • 19:17 - 19:19
    I ticked quite a few of them and
  • 19:19 - 19:21
    my doctor was like, "Ah, well.
  • 19:21 - 19:23
    I don't know, maybe it's cause you've got
  • 19:23 - 19:25
    that other thing as well.
  • 19:25 - 19:26
    And you know how doctors don't
  • 19:26 - 19:27
    really talk to each other
  • 19:27 - 19:29
    if it's not their specialty.
  • 19:29 - 19:31
    They're like, "Oh, no, sorry.
  • 19:31 - 19:33
    I'm very specifically an eye doctor
  • 19:33 - 19:36
    so I don't talk to the brain doctor."
  • 19:36 - 19:38
    Like, " Oh, thanks."
  • 19:38 - 19:40
    But this is all one thing.
  • 19:40 - 19:41
    It's all in- it's all in my head so
  • 19:41 - 19:43
    if you could coordinate with each other?
  • 19:43 - 19:45
    They're like, "Oh, no, no, no."
  • 19:45 - 19:47
    Not my thing/It's also just one body.
  • 19:47 - 19:49
    Yeah, yeah. One body. One human.
  • 19:49 - 19:51
    All works. It's a system.
  • 19:51 - 19:52
    And they're like,
  • 19:52 - 19:54
    "No, oh no. Just this one thing"
  • 19:54 - 19:55
    So they always just kind of
  • 19:55 - 19:57
    chalked it up to that.
  • 19:57 - 19:58
    That I had something else and
  • 19:58 - 20:00
    therefore that's why I didn't really
  • 20:00 - 20:02
    fit this profile and it was a bit weird
  • 20:02 - 20:05
    and I talked about it on my YouTube channel
  • 20:05 - 20:06
    I've got this and this
  • 20:06 - 20:08
    but then in other videos I'd kind of
  • 20:08 - 20:10
    talk about what I was struggling with
  • 20:10 - 20:12
    and then say it's a bit hard because
  • 20:12 - 20:14
    my doctor says: This doesn't fit the profile.
  • 20:14 - 20:16
    And people in the comments were like:
  • 20:16 - 20:18
    "That's probably because you have EDS Jessica."
  • 20:18 - 20:19
    "Have you got checked?"
  • 20:19 - 20:20
    "I think you've got EDS Jessica."
  • 20:20 - 20:22
    "Pretty sure you've got EDS Jessica."
  • 20:22 - 20:23
    "This is EDS."
  • 20:23 - 20:25
    And I was like, is it?
  • 20:25 - 20:26
    My goodness.
  • 20:26 - 20:28
    So I went to my GP and said
  • 20:28 - 20:30
    well I didn't say the internet says
  • 20:30 - 20:33
    I have EDS. I was like:
  • 20:33 - 20:35
    I just would like to be re-referred
  • 20:35 - 20:38
    to rheumatology please.
  • 20:38 - 20:40
    So they could maybe check to see
  • 20:40 - 20:41
    whether I definitely have this thing
  • 20:41 - 20:43
    that I was diagnosed with?
  • 20:43 - 20:45
    Or maybe I have another thing.
  • 20:45 - 20:48
    Ehlers-Danlos Syndrome? Heard of it?
  • 20:48 - 20:51
    And my doctor: "Oh well that's not curable,
  • 20:51 - 20:53
    so I'm not gonna refer you"
  • 20:53 - 20:54
    What?!
  • 20:55 - 20:57
    I was like... I'm sorry?
  • 20:57 - 20:59
    Well we just shouldn't know if we have
  • 20:59 - 21:01
    uncurable things.Obviously.
  • 21:01 - 21:02
    What what what?!
  • 21:02 - 21:05
    And he was like "Yeah they're very busy
  • 21:05 - 21:08
    So, I'm not gonna refer you for them."
  • 21:08 - 21:10
    Ok! Right!
  • 21:10 - 21:13
    So I ended up having to go get a
  • 21:13 - 21:14
    private diagnosis.
  • 21:14 - 21:17
    Which, I live in England. We have the NHS.
  • 21:17 - 21:20
    Doing private healthcare is like
  • 21:20 - 21:23
    a weirdly out there type of thing.
  • 21:23 - 21:24
    We don't do that much.
  • 21:24 - 21:27
    So, I went to get a private diagnosis.
  • 21:27 - 21:29
    Saw a private rheumatologist who was like:
  • 21:29 - 21:31
    "Yeah, you've obviously got EDS."
  • 21:31 - 21:33
    I was like, "Oh!
  • 21:33 - 21:36
    Ok, well the internet was correct."
  • 21:36 - 21:38
    See? Sometimes you can listen to the internet.
  • 21:38 - 21:42
    Ok, that's how my Youtube subscribers
  • 21:42 - 21:45
    wonderfully diagnosed me.
  • 21:45 - 21:48
    What a story. I love that for you.
  • 21:48 - 21:50
    Now do your two diagnoses
  • 21:50 - 21:52
    often go hand-in-hand
  • 21:52 - 21:55
    or are they rarely seen together?
  • 21:55 - 21:59
    According to every doctor I have ever met,
  • 21:59 - 22:03
    I am the only case of these two things
  • 22:03 - 22:06
    interracting. Because, HNPP is quite
  • 22:06 - 22:09
    a rare neurological condition.
  • 22:09 - 22:12
    And it comes from my father.
  • 22:12 - 22:15
    And my hyper mobility comes from my mother.
  • 22:15 - 22:19
    So, I'm just blessed.
  • 22:19 - 22:20
    What a combo.
  • 22:20 - 22:21
    What a combo.
  • 22:21 - 22:24
    Well, it's made quite a wonderful woman.
  • 22:24 - 22:26
    So, I'm glad we have you.
  • 22:26 - 22:27
    I'm not glad for your pain.
  • 22:27 - 22:29
    I'm not glad for what you had to go
  • 22:29 - 22:30
    through to get here.
  • 22:30 - 22:33
    But I am glad our community has you,
  • 22:33 - 22:34
    because we need more people like you.
  • 22:34 - 22:36
    With such a powerful voice and
  • 22:36 - 22:37
    a powerful story.
  • 22:37 - 22:39
    As you've said, you've come out of the
  • 22:39 - 22:40
    closet twice.
  • 22:40 - 22:44
    As a disabled woman as well as being gay.
  • 22:44 - 22:46
    Can you share some of that journey
  • 22:46 - 22:48
    of intersectionality. Coming to terms
  • 22:48 - 22:51
    with two different, being apart of two
  • 22:51 - 22:53
    different minority communities.
  • 22:53 - 22:55
    So I think I have a very different story
  • 22:55 - 22:58
    and a very different journey to most
  • 22:58 - 22:59
    young LGBTQ+ people.
  • 22:59 - 23:02
    And I think in a way, that my disability
  • 23:02 - 23:03
    really does play into that.
  • 23:03 - 23:07
    So, I don't have a coming out story
  • 23:07 - 23:10
    because I never came out to my parents.
  • 23:10 - 23:12
    I was just always kind of like:
  • 23:12 - 23:14
    "This is me. This is who I like.
  • 23:14 - 23:16
    I really like this girl in the X-Men and
  • 23:16 - 23:18
    we're going to date and I
  • 23:18 - 23:19
    will marry her one day."
  • 23:19 - 23:21
    And my parents were like:
  • 23:21 - 23:24
    "She's animated but you do you."
  • 23:24 - 23:25
    I'm like: Yeah!
  • 23:25 - 23:28
    Um, I think partly my parents
  • 23:28 - 23:29
    are Quakers.
  • 23:29 - 23:32
    So they never put any expectation
  • 23:32 - 23:35
    on me that I had to be a certain way.
  • 23:35 - 23:36
    They never said, you know,
  • 23:36 - 23:38
    "When you grow up and get a husband."
  • 23:38 - 23:40
    It was always just:
  • 23:40 - 23:42
    "When you grow up and if you choose
  • 23:42 - 23:43
    to get married."
  • 23:43 - 23:44
    I'm like, yeah ok.
  • 23:44 - 23:46
    So it always felt very open and
  • 23:46 - 23:48
    like I could kinda share that part of me.
  • 23:48 - 23:52
    But, being disabled and having that with me
  • 23:52 - 23:55
    as I was growing up.
  • 23:55 - 23:57
    Not knowing that I was disabled but knowing
  • 23:57 - 23:59
    that there was something about my body
  • 23:59 - 24:03
    that was wrong, that other people weren't listening to.
  • 24:03 - 24:04
    Weren't believing in.
  • 24:04 - 24:06
    Because, my god, when you're a child
  • 24:06 - 24:08
    and you try to tell adults things,
  • 24:08 - 24:10
    it can be very difficult to explain
  • 24:10 - 24:13
    medical conditions because people don't
  • 24:13 - 24:15
    tend to believe children about these kinds
  • 24:15 - 24:16
    of things. When you say
  • 24:16 - 24:18
    you have a headache, they're like,
  • 24:18 - 24:20
    "Yeah, but you know. Not really.
  • 24:20 - 24:21
    Cause you're a kid."
  • 24:21 - 24:22
    Like, no no.
  • 24:22 - 24:23
    Genuinely, I'm having a migraine
  • 24:23 - 24:24
    right now. I realize
  • 24:24 - 24:26
    I'm a child but I'm having a migraine.
  • 24:26 - 24:30
    And having that to kinda battle agaisnt
  • 24:30 - 24:33
    and deal with made my sexuality
  • 24:33 - 24:36
    almost a...it almost became
  • 24:36 - 24:38
    something that I, of course,
  • 24:38 - 24:40
    I would just accept it.
  • 24:40 - 24:42
    Because I had something that was weighing
  • 24:42 - 24:44
    quite heavily on me and my
  • 24:44 - 24:46
    sexuality only brought me joy.
  • 24:46 - 24:49
    It was only, I mean I'm not saying it
  • 24:49 - 24:50
    brought me joy in fact like,
  • 24:50 - 24:52
    I had lots of girlfriends.
  • 24:52 - 24:54
    Because I really didn't, at all.
  • 24:54 - 24:56
    But it brought me joy in that,
  • 24:56 - 24:59
    I would have these beautiful really
  • 24:59 - 25:03
    close relationships that I would
  • 25:03 - 25:05
    have this massive crush on an actress
  • 25:05 - 25:08
    and I get to like, watch her and things.
  • 25:08 - 25:10
    and feel happy and I was like yeah!
  • 25:10 - 25:12
    This being gay thing is great!
  • 25:12 - 25:13
    I love it!
  • 25:13 - 25:15
    But then the body.
  • 25:15 - 25:18
    I'm like ugh, my body is useless.
  • 25:18 - 25:19
    But at least I'm gay.
  • 25:19 - 25:21
    So I've got that going for me.
  • 25:21 - 25:23
    Yeah, it became almost a saving grace
  • 25:23 - 25:24
    throughout my teenage years.
  • 25:24 - 25:27
    Struggling against a body that didn't work
  • 25:27 - 25:30
    and being told that it should.
  • 25:30 - 25:32
    Being told that I was incorrect on something.
  • 25:32 - 25:34
    And then having this thing that I was
  • 25:34 - 25:36
    really sure of and really happy with and
  • 25:36 - 25:38
    quite passionate about.
  • 25:38 - 25:40
    So, it's definetly a different coming out
  • 25:40 - 25:43
    to most LGBTQ+ young people
  • 25:43 - 25:46
    but I, in a way, hope that it's something
  • 25:46 - 25:49
    that we get more of going forwards.
  • 25:49 - 25:51
    That it's more accepted.
  • 25:51 - 25:52
    That children are able to
  • 25:52 - 25:53
    just speak their mind.
  • 25:53 - 25:55
    That people can support them.
  • 25:55 - 25:58
    That's a really beautiful story. Honestly.
  • 25:58 - 26:00
    You know a lot of my friends growing up
  • 26:00 - 26:03
    were LGBTQ+ because I was the only
  • 26:03 - 26:06
    disabled kid and they were the only gay kid,
  • 26:06 - 26:10
    or the only trans kid, and so you know we
  • 26:10 - 26:12
    just were like, "Hey!
  • 26:12 - 26:14
    You're also different and not like the other
  • 26:14 - 26:17
    kids in class. We should be friends."
  • 26:17 - 26:21
    And so I really like hearing your story
  • 26:21 - 26:24
    because it is very different than what
  • 26:24 - 26:26
    a lot of my LGBTQ+ friends went through.
  • 26:26 - 26:29
    There's actually a really big crossover
  • 26:29 - 26:30
    between the disabled community
  • 26:30 - 26:32
    and the LGBTQ+ community.
  • 26:33 - 26:36
    I think, correct statistic, is that
  • 26:36 - 26:39
    one third of people who are LGBTQ+
  • 26:39 - 26:40
    also have a disability.
  • 26:40 - 26:43
    And- which is a really interesting statistic.
  • 26:43 - 26:45
    But I think a lot of it has to do with
  • 26:45 - 26:48
    the fact that you have to come out
  • 26:48 - 26:51
    about one thing, so you come out about
  • 26:51 - 26:52
    something else. Like you're more
  • 26:52 - 26:54
    comfortable with the other thing and
  • 26:54 - 26:56
    you're like, "Look, let me just
  • 26:56 - 26:57
    put this out here. You can all clearly see
  • 26:57 - 27:00
    that I am disabled, so while I'm here,
  • 27:00 - 27:02
    I'm gay too."
  • 27:02 - 27:06
    Well yeah! It's like you already have this
  • 27:06 - 27:08
    big thing to accept about yourself.
  • 27:08 - 27:10
    You already have this big target on your
  • 27:10 - 27:12
    back or you know a community runt
  • 27:12 - 27:15
    so you're like, ok well, I've got one
  • 27:15 - 27:17
    thing here's the other.
  • 27:17 - 27:20
    Now I can see that statistic being true
  • 27:20 - 27:22
    honestly because, as I said, so many of my
  • 27:22 - 27:24
    friends are LGBTQ+ and I'm disabled
  • 27:24 - 27:27
    so I kinda do have a lot of friends in
  • 27:27 - 27:29
    both worlds and I see a lot of that
  • 27:29 - 27:31
    crossover. I see that I've- now, at this point
  • 27:31 - 27:33
    in my life for both communities.
  • 27:33 - 27:35
    Met many people who do identify as being
  • 27:35 - 27:36
    a part of both.
  • 27:36 - 27:38
    When you met your wife did she know
  • 27:38 - 27:39
    sign language?
  • 27:39 - 27:41
    No! (laughs)
  • 27:41 - 27:44
    She didn't. In fact, when I first met my wife,
  • 27:44 - 27:47
    on our first date, I hadn't told her
  • 27:47 - 27:50
    anything about my disabilities.
  • 27:50 - 27:54
    I kind of wanted to see whether she
  • 27:54 - 27:57
    even liked me because I'd been on so many dates
  • 27:57 - 28:00
    where you spent so much time explaining
  • 28:00 - 28:03
    what's up. / Yup! / and then you never hear from
  • 28:03 - 28:05
    them again and ugh, it's such a waste of
  • 28:05 - 28:07
    my time!/ Very much agree!
  • 28:07 - 28:08
    But then you have to balance it with
  • 28:08 - 28:10
    do I want to go on a number of dates
  • 28:10 - 28:12
    or do I want to spend a whole month
  • 28:12 - 28:14
    talking to someone and then I tell them
  • 28:14 - 28:16
    and they're like, "Oh, I can't redo that?"
  • 28:16 - 28:19
    And then you're like, "Ugh! Well I
  • 28:19 - 28:20
    just wasted my month of talking to you.
  • 28:20 - 28:22
    What a waste of time!"
  • 28:22 - 28:24
    So when she first came up
  • 28:24 - 28:26
    she actually thought that I was wearing a
  • 28:26 - 28:28
    bluetooth device and was working.
  • 28:28 - 28:29
    Cause she saw my hearing aids and was like
  • 28:29 - 28:32
    "Oh, she's working hard! Continuing on
  • 28:32 - 28:34
    with her bluetooth device."
  • 28:34 - 28:36
    And I think to start with, thought I was
  • 28:36 - 28:38
    a bit rude that I hadn't removed
  • 28:38 - 28:40
    my headphones. I was like:
  • 28:40 - 28:42
    "Umm yeah should probably tell you
  • 28:42 - 28:44
    that I'm deaf."
  • 28:44 - 28:46
    And so yeah she didn't know anything.
  • 28:46 - 28:50
    But she was very blasé on our first date
  • 28:50 - 28:52
    I didn't tell her, you know,
  • 28:52 - 28:54
    "This is me. I have this disability.
  • 28:54 - 28:55
    This is how it affects me."
  • 28:55 - 28:59
    She was like, "Ok. Mmm. Do you still like
  • 28:59 - 29:01
    to go for walks in the woods?"
  • 29:01 - 29:02
    "I do."
  • 29:02 - 29:04
    "Do you still like national trust properties?"
  • 29:04 - 29:05
    "I do."
  • 29:05 - 29:08
    And it was just like the basic things that
  • 29:08 - 29:10
    she needed to know like, "Are you good
  • 29:10 - 29:11
    around trees?"
  • 29:11 - 29:13
    "I love a tree. It's wonderful."
  • 29:13 - 29:15
    "You good around old properties?"
  • 29:15 - 29:16
    "Love an old property."
  • 29:16 - 29:17
    "Excellent"
  • 29:17 - 29:19
    Basics of our marriage, that.
  • 29:19 - 29:20
    We're country girls at heart.
  • 29:20 - 29:24
    That is actually exactly how a first date
  • 29:24 - 29:25
    with a disabled person should go.
  • 29:25 - 29:29
    Word to anybody who ever goes on a date
  • 29:29 - 29:31
    with a disabled person.
  • 29:31 - 29:33
    That's how you know it's a good match:
  • 29:33 - 29:35
    If you're able to be blasé and focus on
  • 29:35 - 29:37
    the actual parts of them that are human
  • 29:37 - 29:38
    outside of disability. Key!
  • 29:38 - 29:40
    You will win a lot of points with us.
  • 29:40 - 29:41
    (giggles)
  • 29:41 - 29:43
    You mentioned something that like
  • 29:43 - 29:45
    really hit me and maybe we can talk about
  • 29:45 - 29:47
    it more on the video that we do on your
  • 29:47 - 29:48
    channel cause this video is already
  • 29:48 - 29:52
    forever long but it like almost got me
  • 29:52 - 29:54
    like choked up because when you said it
  • 29:54 - 29:56
    it resonated with me so hard.
  • 29:56 - 29:58
    And that is: You look more capable than
  • 29:58 - 30:00
    you sometimes are.
  • 30:00 - 30:01
    Or you present more
  • 30:01 - 30:02
    able-bodied than you are.
  • 30:02 - 30:04
    And I think that is something
  • 30:04 - 30:06
    that I have lived with my whole life.
  • 30:06 - 30:08
    It is really challenging.
  • 30:08 - 30:10
    It has its perks,
  • 30:10 - 30:12
    It has its benefits.
  • 30:12 - 30:13
    You know there are times when
  • 30:13 - 30:15
    I can just like seamlessly
  • 30:15 - 30:16
    fit into a group
  • 30:16 - 30:18
    and not be discriminated against
  • 30:18 - 30:19
    for a minute
  • 30:19 - 30:21
    because nobody knows.
  • 30:21 - 30:24
    But also, you know I remember being
  • 30:24 - 30:26
    in middle school
  • 30:26 - 30:30
    and actively losing most of my sight.
  • 30:30 - 30:32
    I had another blind student at the school
  • 30:32 - 30:33
    who was fully blind from birth.
  • 30:33 - 30:36
    And the teacher turns to me and goes,
  • 30:36 - 30:37
    "Molly!
  • 30:37 - 30:39
    Help him. He's blind, he can't see it."
  • 30:39 - 30:40
    And I was like,
  • 30:40 - 30:42
    "No, no. I too am blind
  • 30:42 - 30:44
    with guide dog. I don't know
  • 30:44 - 30:46
    what you're not getting. I too cannot
  • 30:46 - 30:47
    see the thing."
  • 30:47 - 30:49
    And I feel like that's like the
  • 30:49 - 30:51
    perfect example of something I faced
  • 30:51 - 30:52
    almost daily.
  • 30:52 - 30:54
    Is just like and I- I just recently
  • 30:54 - 30:57
    watched your, you did an ableism
  • 30:57 - 30:58
    video, which had me laughing
  • 30:58 - 31:01
    out loud and again one of the ones
  • 31:01 - 31:03
    you said, well many of the ones
  • 31:03 - 31:04
    you said resonated
  • 31:04 - 31:06
    but like, well at least you look good.
  • 31:06 - 31:08
    And it's like a I get that all the time.
  • 31:08 - 31:09
    Like, "Ugh I can't see"
  • 31:09 - 31:11
    "Oh, at least your eyes are beautiful."
  • 31:11 - 31:11
    And I'm like...
  • 31:11 - 31:13
    Wonderful, thanks.
  • 31:13 - 31:14
    Thanks.
  • 31:14 - 31:15
    That really helps.
  • 31:15 - 31:17
    And I- yeah
  • 31:17 - 31:19
    It is, it can be very challenging
  • 31:20 - 31:22
    and even withing your own
  • 31:22 - 31:24
    disability community, I don't know
  • 31:24 - 31:25
    if you find this you know
  • 31:25 - 31:28
    with a part of- because you identify
  • 31:28 - 31:30
    with so many different groups
  • 31:30 - 31:31
    of disability, I don't know if you
  • 31:31 - 31:33
    find this in any of your kind of subsections
  • 31:33 - 31:35
    of the community, but
  • 31:35 - 31:36
    if you don't do things
  • 31:36 - 31:38
    the way a lot of them do
  • 31:38 - 31:39
    because you're accommodating
  • 31:39 - 31:41
    other aspects of your disability
  • 31:41 - 31:42
    you're judged for it.
  • 31:42 - 31:45
    And I feel like because
  • 31:45 - 31:48
    being blind is the part of my disability that
  • 31:48 - 31:49
    gets focused on the most,
  • 31:49 - 31:51
    people assume I should accommodate it
  • 31:51 - 31:53
    the way all blind people do.
  • 31:53 - 31:55
    Or the way a lot of the community does
  • 31:55 - 31:57
    And I'm like, "Well,
  • 31:57 - 31:58
    there's also other layers
  • 31:58 - 31:59
    to my disability.
  • 31:59 - 32:02
    Like, living with PTSD
  • 32:02 - 32:04
    and really bad generalized anxiety
  • 32:04 - 32:06
    is disabling for me at times.
  • 32:06 - 32:08
    And so that's a very real
  • 32:08 - 32:10
    part of my disability that I have to
  • 32:10 - 32:12
    accommodate separate to my blindness.
  • 32:12 - 32:16
    Or like I'm just like very sensitive
  • 32:16 - 32:18
    I have a very sensitive digestive system
  • 32:18 - 32:20
    I've dealt with irritable bowel syndrome
  • 32:20 - 32:21
    my whole life, so it's
  • 32:21 - 32:24
    really hard for me to eat sometimes.
  • 32:24 - 32:25
    And for me to take-
  • 32:25 - 32:27
    I'm very sensitive to medications. Those
  • 32:27 - 32:29
    are other parts of my human body
  • 32:29 - 32:30
    that I need to accommodate.
  • 32:30 - 32:32
    And I have other parts of my
  • 32:32 - 32:35
    disability that I don't talk about on the internet
  • 32:35 - 32:38
    or that I don't expose to the rest of the world.
Title:
Being Deaf & Being Blind - Chatting Disability Stuff w/ Jessica Kellgren-Fozard!
Description:

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Video Language:
English
Team:
Captions Requested
Duration:
39:13

English subtitles

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