WEBVTT

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(logo swishing)

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(bright music)

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(dramatic music)

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I am now introducing to you Wayne Connell.</v>

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Wayne is the president

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of Invisible Disabilities Association.

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IDA has been advocating and raising awareness

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for people with invisible disabilities since 1996.

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So we're delighted to have Wayne here with us today.

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Please welcome Wayne.

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(audience applauding)

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Okay, is my mute off? It is.</v>

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So welcome, Colorado.

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(audience cheering and applauding)

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Can I hear you guys? All right.

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So I thought today I tell you a little story.

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So I've got a little story here

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and I gotta get it kinda ready here in just a sec.

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So I thought, I thought I'd start a little story,

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and the little story starts out

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with these little shoes here, little ballet shoes.

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And there was a girl who grew up here

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who loved to dance as a little girl.

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And as she got older, you know,

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you get all those dreams and you get a chance to do things

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like cheerleading and stuff and do athletics.

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And you get involved in pompom girls, right?

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And I don't know if you recognize the colors,

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but these are actually Grand Junction colors.

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(audience cheering) So, all right!

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All right, I got some Grand Junction. Yeah!

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So, you know, love to cheer-lead, do pompoms,

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and all those fun things, right?

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Because that's what little girls love to do, right?

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They get up and do those things.

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And as they get older,

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you know, they may get an opportunity

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to do some beauty pageants, right?

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Like maybe even Mrs. Grand Junction, okay?

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But yeah, you have opportunity.

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Maybe you wanna do some modeling

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and some acting and those things.

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And so, you know, that's what little girls wanna do.

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I mean, they wanna grow up and do things

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and do amazing things and stuff.

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But it's more than just beauty

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and more than just acting and dancing,

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and maybe musical theater and drama and all those things.

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But it's kind of more than that

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because, you know, you wanna go out

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and you wanna make a change in the world.

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You wanna make a difference in the world, right?

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So you actually, you go out

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and you get all dressed up,

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you work hard in college,

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and you work hard in college,

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and you get a job and you're like,

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you're excited about this job, right?

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Because this job is allowing you to use those skills

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and talents and everything

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that you worked hard on, right?

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And maybe this job is about learning numbers

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and accounting and all those fun things.

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And you're thinking, "I got some dreams here."

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And maybe those dreams are, "I can make an impact on people.

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Maybe I'll get a job with the government

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and they'll help pay for maybe a master's degree

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so I can go and make a difference

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in people's lives and impact."

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And maybe this is...

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Maybe you're in your mid to late 20s

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and you're going, "Hey, this is like crazy amazing."

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And, I mean, life is like really good.

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And then one day you can't move your leg.

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It's kind of, doesn't move, it's paralyzed.

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But you know, you're this tough person,

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so you drive to work in a stick mobile,

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if you guys even know what a stick car is, right?

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I mean, kids nowadays don't know what that is.

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But you drive and you actually use

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your hands to push the clutch in and shift

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because you can't move your left leg.

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And so you're like moving your leg and shifting

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and, you know, doing all this (indistinct).

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Talk about distracted driver, right?

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So doing all those things

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and then all of a sudden, you know,

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both legs are gone, right?

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And you're paralyzed.

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You end up in the hospital trying to figure out

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what's going on, you know, what's happening.

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But there's visibility to what just happened

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because you're in a wheelchair from this paralysis,

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and people can see you're in a wheelchair.

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"You're in a wheelchair.

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Okay, I get it.

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You're in a wheelchair. I can see that."

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And you're thinking, "You know what?

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I'm still gonna change the world.

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I got these dreams and stuff.

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I can do it from a wheelchair," right?

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I mean, in Colorado you can do sled hockey,

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or you can do skiing or rugby.

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You know, a wheelchair doesn't necessarily

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limit a person, but--

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(child in audience speaking indistinctly)

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Yeah, exactly right.

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So, but what happens is,

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what if there's these things like pain?

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You know, what do you do with the pain, right?

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The pain's not going away.

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You're diagnosed with multiple sclerosis

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but there's this pain.

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You can't figure out that out.

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And as the pain comes along,

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there's this diagnosis of Lyme disease.

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And what is this crazy thing?

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And it's been going on for 14 years, you know.

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Here you are 28 years old

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and you're not able to work anymore,

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and you're not able to do these things.

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So what happens?

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You start to become invisible, okay?

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Oh, you lost one of the shoes, even.

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You start to become invisible, right?

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Because what happens is all those people that are like,

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"Hey, I'm gonna be behind you.

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I got you, I got you."

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All of a sudden they're like, "Well, wow,

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it's going on for like months and months and months

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and years and stuff.

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I don't know how to deal with it."

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So says, "I don't know what to do."

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Guess what I don't do? Anything.

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So I kind of move on.

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But, you're still here.

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Chronic is not always necessarily fatal.

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So chronic could be like 50 more years of your life.

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You don't know that.

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But your dream was always this, you know,

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"Hey, I wanna show people how amazing I am."

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So when you get a chance to go in public,

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you do it all up.

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Bling, bling, bling, big time, right?

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Okay, I bet you didn't even know these shoes existed.

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No, they weren't done with the Bedazzler either.

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I mean, these are the real deal.

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And bummers, they don't make 'em anymore.

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But you wanna show people,

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'cause your shoes are important, right?

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It's what you showed.

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You know, these are all these things

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and you want people to see you.

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You do exist.

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They just don't know you exist anymore, right?

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So you get the opportunity

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and you get married.

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Cool, right?

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Because you've been able to walk again, now.

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I mean, you got used to your legs,

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and you get married,

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and you think, "Okay, I got some dreams here.

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I'm gonna be a wife, and gonna get married

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and it's gonna be a..."

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you know, what does that look like, right?

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And the person you married,

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do they know what they're signing up for?

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Probably not. Okay.

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So we kind of move down, right?

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But life goes on,

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days and months and years and years go on.

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And all of a sudden those dreams of...

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You can't do it anymore, you know.

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People talk about being disabled.

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It's really when you're unable to do things, okay?

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You wish you could.

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You wish you could go back to this working thing.

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In fact, you might even have dreams.

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You wake up, you've got a job at the grocery store,

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and you're all excited.

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You're like, "Wow, I got a job."

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And you wake up and it's like, "Darn it.

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My life is not about that anymore

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and I wish I could do that."

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And people will say,

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"Well, you know, you're lucky you don't have to work."

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And you're like, "Well, lucky, you know,

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you're standing too far from me

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for me to get too close to you."

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So those things happen,

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and then you think, "You know what?"

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But you do have a little love in your life.

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And your love in your life is you love safari, okay?

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I mean, come on, who doesn't love animals, right?

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A trip to Animal Kingdom down there, and Disney World.

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Or maybe...

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But you'd love to go on on safari

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because you just love animals, right,

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'cause animals love you unconditionally.

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Okay, and so you got this,

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you think, "You know what, I want these in public too.

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'cause I want people to know that I love animals," right?

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So you kinda, you work through that.

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But you can't go on safari, right?

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You see all these safaris and you can't go on safari

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'cause it's just too far to go to Africa, right?

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So you get animals yourself, right?

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And maybe you get, you move in the country

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and you get a couple goats, right,

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'cause goats are cool, okay?

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You know what's great about goats?

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They love you, okay?

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And maybe these goats are named Pumpkin and Cookie, right?

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Like, who names their animals delicious names, right,

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Pumpkin and Cookie?

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And Pumpkin and Cookie actually become therapy goats.

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Okay?

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So they actually become goats

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because they love to cuddle,

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and they know that now mommy,

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who know, can't have children on her own,

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they become her children and they become her friend, right?

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Because she's got nobody.

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Everybody's abandoned her.

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They've left her, and she's out there all alone.

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And so what is life like today?

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Yes, it's fuzzy pajamas and slippers, okay?

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Good thing Walmart exists with millions

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of different kinds of fuzzy pajamas, okay?

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But this is what your life is now.

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It's at home. It's trapped.

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It's your lifeline is to the world through the internet,

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through Millions Missing.

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I mean, that's what happens is like,

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"That's my community now."

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And this is, and this is what it's about.

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It becomes this,

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'cause you're missing,

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and you're missing, you're not here today.

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So my wife, Sherri's not here today, okay?

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She couldn't make it.

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This is too hard for her today to come here.

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And yes, these are all her shoes.

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I couldn't believe I found them.

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(audience chuckling)

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And we're missing here, right?

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Imagine living with an illness that people can't see.

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I mean, many of you imagine that.

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You're like, "Nobody can see what I'm going through."

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But when they find it even harder to believe it,

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when you share with 'em and tell 'em this is what it is.

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You know, it's ME. It's grounding fatigue.

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It's multiple sclerosis.

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It's fibromyalgia.

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It's Lyme disease.

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It's all these different illnesses.

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It's PTSD.

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It's multiple chemical sensitivity, okay?

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But people don't believe it.

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You know, give an example,

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like multiple chemical sensitivity.

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That's another one of those names.

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It's like people who are ill from chemicals,

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but sensitivity?

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No, deathly ill, but we use this term,

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oh, we call it sensitive, right?

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It actually makes 'em really sick.

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And what's the main cure for something like that?

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Avoidance.

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Wow, how cool is that?

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You try not to be isolated

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and the only thing you can do

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is avoid people that are wearing it.

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So you actually have to be isolated to be around it.

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And you become out of sight, out of mind, right?

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That's what happens.

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And all of a sudden, your friends,

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yeah, hey, I always call it the 13-week club.

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They hang around for 12 weeks

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and at week 13 they're like gone,

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because that's all we can handle as humans.

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You know, it's kind of that old thing

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of how do we keep going?

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How do we keep on that?

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But you become out of your...

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You know, you put it out of mind.

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You become isolated alone.

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You get disregarded, right?

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I mean, you may spend a half an hour sharing with somebody

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and they're like, "What's your problem?"

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And you're like, "Well, let me tell you."

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You spend a half an hour with 'em,

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and they're like, as we mentioned earlier,

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"Yeah, well, I'm tired, too," you know.

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You mean you're tired because you went to the zoo

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and you went to the...

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(indistinct due to siren in background)

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"You're tired because you did things.

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You're not tired because your bones ache

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and your body aches," and they don't get it.

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So, but what if you have ME,

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or you have multiple chemical sensitivity,

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and you have Lyme disease,

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and you have multiple sclerosis,

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you have PTSD and you have all these things

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and people think, "Oh, you're just crazy."

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No, these are real things that you have.

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It's more than one.

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And still, we don't believe people.

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They just spent a half an hour

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telling you what they're going through

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and we don't believe them.

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Yet if we would only believe them, right?

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Right?

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I mean, that's what we wanna do, is we wanna...

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Come on, we need to believe people.

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This is why Invisible Disabilities was started, right?

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That the organization was started

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because people didn't believe.

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We park in disabled parking

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and people would scream at us.

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They're like, "There's nothing wrong with your wife,"

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And they'd scream at you.

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And we wrote a pamphlet called,

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"Don't Judge by Appearances,"

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because the person standing in front of you

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(indistinct due to background noise)

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That you're great, you're trying to defend them.

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Maybe that person right there

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that you're really trying to defend

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and you need to listen to them.

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But the story goes on and on around the world, right?

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This is why the Millions Missing is around the world.

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This is a world thing.

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It's not just here in the U.S.,

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but it's all around the world.

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So our organization is...

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Our desire to really encourage, educate, and connect.

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(loud siren in background)

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I hope that's person's okay, right?

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And I hope they get to 'em on time.

12:04.496 --> 12:08.220
So we're about encouraging and educating,

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connecting people, right?

12:09.240 --> 12:10.680
It is about connection.

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You know, it's about having a Facebook page

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and people connecting

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because you need a place where you can go

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and say, "Hey, this is what I'm going through."

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You need a connection.

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But we're trying to look at the deeper roots

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of society as an organization.

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Our organization is not about finding a cure of the illness.

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What we wanted is (indistinct due to siren in background).

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Because if your friends and family don't believe you,

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how are they gonna help you get help?

12:30.420 --> 12:31.650
If they think you're making this up,

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how are they gonna help you, right?

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So somebody needs to come in and do that.

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So that's what we're really trying to do.

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We're here to support the millions

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that are missing, right?

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All these here, these here,

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these people that are missing, right?

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And their caregivers, right?

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I mean, the reality is you didn't sign up up for it either.

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Okay, maybe I did sign up for it,

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but I didn't know what was I was totally signing up for.

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I just knew that there was this blonde,

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and I was like, okay, smart, funny, gorgeous.

13:00.450 --> 13:01.890
What do I know? Right?

13:01.890 --> 13:03.420
And amazing.

13:03.420 --> 13:05.640
So I did sign up for that, okay?

13:05.640 --> 13:07.260
But I didn't know, we didn't know,

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we didn't know what the whole thing was gonna be.

13:08.730 --> 13:10.470
We thought, "Hey, she's gonna be back to work

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and dancing and singing in like a year

13:11.880 --> 13:12.713
or something like that."

13:12.713 --> 13:14.337
We don't know.

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But the reality is, is that the caregivers,

13:16.950 --> 13:18.096
we wanna have an opportunity--

13:18.096 --> 13:18.929
(indistinct due to background noise)

13:18.929 --> 13:19.762
Right?

13:19.762 --> 13:21.450
To make changes in our society, right?

13:21.450 --> 13:24.810
Because our society needs to say it is real.

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If somebody shares it with you, it is real.

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Acknowledge what they're going through.

13:27.570 --> 13:28.950
Gee whiz.

13:28.950 --> 13:31.410
You know, nothing's worth being stuck in your home, right?

13:31.410 --> 13:33.960
You know, so I brought one more pair of shoes here.

13:34.830 --> 13:35.663
Okay?

13:39.750 --> 13:42.600
And these shoes are my trail runners, okay?

13:42.600 --> 13:44.490
And the reason why I got trail runner shoes

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is because it's a journey, a lifetime journey of running.

13:49.230 --> 13:51.210
It's a lifetime journey of trudging

13:51.210 --> 13:53.490
and climbing and all these things.

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So you gotta have trail runners with good soles

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and the ability to keep things moving along.

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And because the millions that are missing,

14:03.630 --> 14:06.120
while we want it to seem is that they are invisible no more.

14:06.120 --> 14:08.220
That's our vision as Invisible Disabilities

14:08.220 --> 14:10.050
is that you would be invisible no more.

14:10.050 --> 14:12.330
That means that your story would matter.

14:12.330 --> 14:13.980
That people wouldn't come to you

14:13.980 --> 14:16.110
and think you're any different than anybody else.

14:16.110 --> 14:18.090
Yes, you're going through difficult times.

14:18.090 --> 14:19.680
Incredible difficult times.

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But we should treat you like you're

14:21.060 --> 14:22.320
an amazing part of this human race.

14:22.320 --> 14:23.940
We should treat you the same.

14:23.940 --> 14:25.390
So that's why I've got these.

14:27.780 --> 14:30.360
And we actually made these cool little badges for a reason.

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I live with an invisible disability, right,

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'cause people say, "Well I don't have

14:33.060 --> 14:34.680
an invisible disability," right?

14:34.680 --> 14:36.174
I mean, (indistinct) what's that?

14:36.174 --> 14:37.290
Right, and that's what they're gonna ask you.

14:37.290 --> 14:38.880
What's cool is you pull these little cards out

14:38.880 --> 14:40.710
and it's a definition of invisible disability,

14:40.710 --> 14:42.240
and you give it to 'em, right?

14:42.240 --> 14:44.760
Because having to explain it sometimes

14:44.760 --> 14:45.897
is part of the battle, right?

14:45.897 --> 14:49.083
And so, I'm so thrilled to be here today.

14:49.980 --> 14:52.440
We founded Invisible Disabilities here in Colorado.

14:52.440 --> 14:54.480
I'm excited to be here in our home state.

14:54.480 --> 14:57.540
And so thrilled to see what you guys are doing

14:57.540 --> 14:58.680
with Millions.

14:58.680 --> 15:00.090
You know, I've been watching Jennifer Brier

15:00.090 --> 15:02.760
and the whole, the amazing story of unrest

15:02.760 --> 15:03.840
and all those amazing things.

15:03.840 --> 15:07.830
But really, you know, this is visibility.

15:07.830 --> 15:09.060
And as an organization,

15:09.060 --> 15:10.590
our goal is to make sure

15:10.590 --> 15:13.140
that you have huge visibility, okay?

15:13.140 --> 15:15.210
And I'll share you something that's very exciting.

15:15.210 --> 15:17.370
We haven't shared this public here really yet,

15:17.370 --> 15:20.310
but the state of Alaska has adopted our logo

15:20.310 --> 15:23.610
on state IDs and state driver's licenses

15:23.610 --> 15:26.700
to show visibly that you have an illness.

15:26.700 --> 15:28.872
And we are gonna go all 50 states for this, okay?

15:28.872 --> 15:29.705
(audience cheering and applauding)

15:29.705 --> 15:33.210
Because nothing's worse than your child with autism

15:33.210 --> 15:34.860
to be told that they're just acting up.

15:34.860 --> 15:36.810
And you can show them an actual state ID

15:36.810 --> 15:38.220
that has a logo on it.

15:38.220 --> 15:40.830
Says, yeah, you know what, this is real, okay.

15:40.830 --> 15:42.630
And so we're so excited about that.

15:42.630 --> 15:44.490
But we're so excited about coming alongside

15:44.490 --> 15:46.020
the other organizations 'cause you guys

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are doing amazing research

15:48.060 --> 15:49.650
and all those things to help support,

15:49.650 --> 15:50.670
and we're gonna support you too.

15:50.670 --> 15:51.830
So thank you so much.

15:51.830 --> 15:56.080
(audience cheering and applauding)

16:02.049 --> 16:04.632
(upbeat music)