(logo swishing)
(bright music)
(dramatic music)
I am now introducing to you Wayne Connell.
Wayne is the president
of Invisible Disabilities Association.
IDA has been advocating and raising awareness
for people with invisible disabilities since 1996.
So we're delighted to have Wayne here with us today.
Please welcome Wayne.
(audience applauding)
Okay, is my mute off? It is.
So welcome, Colorado.
(audience cheering and applauding)
Can I hear you guys? All right.
So I thought today I tell you a little story.
So I've got a little story here
and I gotta get it kinda ready here in just a sec.
So I thought, I thought I'd start a little story,
and the little story starts out
with these little shoes here, little ballet shoes.
And there was a girl who grew up here
who loved to dance as a little girl.
And as she got older, you know,
you get all those dreams and you get a chance to do things
like cheerleading and stuff and do athletics.
And you get involved in pompom girls, right?
And I don't know if you recognize the colors,
but these are actually Grand Junction colors.
(audience cheering) So, all right!
All right, I got some Grand Junction. Yeah!
So, you know, love to cheer-lead, do pompoms,
and all those fun things, right?
Because that's what little girls love to do, right?
They get up and do those things.
And as they get older,
you know, they may get an opportunity
to do some beauty pageants, right?
Like maybe even Mrs. Grand Junction, okay?
But yeah, you have opportunity.
Maybe you wanna do some modeling
and some acting and those things.
And so, you know, that's what little girls wanna do.
I mean, they wanna grow up and do things
and do amazing things and stuff.
But it's more than just beauty
and more than just acting and dancing,
and maybe musical theater and drama and all those things.
But it's kind of more than that
because, you know, you wanna go out
and you wanna make a change in the world.
You wanna make a difference in the world, right?
So you actually, you go out
and you get all dressed up,
you work hard in college,
and you work hard in college,
and you get a job and you're like,
you're excited about this job, right?
Because this job is allowing you to use those skills
and talents and everything
that you worked hard on, right?
And maybe this job is about learning numbers
and accounting and all those fun things.
And you're thinking, "I got some dreams here."
And maybe those dreams are, "I can make an impact on people.
Maybe I'll get a job with the government
and they'll help pay for maybe a master's degree
so I can go and make a difference
in people's lives and impact."
And maybe this is...
Maybe you're in your mid to late 20s
and you're going, "Hey, this is like crazy amazing."
And, I mean, life is like really good.
And then one day you can't move your leg.
It's kind of, doesn't move, it's paralyzed.
But you know, you're this tough person,
so you drive to work in a stick mobile,
if you guys even know what a stick car is, right?
I mean, kids nowadays don't know what that is.
But you drive and you actually use
your hands to push the clutch in and shift
because you can't move your left leg.
And so you're like moving your leg and shifting
and, you know, doing all this (indistinct).
Talk about distracted driver, right?
So doing all those things
and then all of a sudden, you know,
both legs are gone, right?
And you're paralyzed.
You end up in the hospital trying to figure out
what's going on, you know, what's happening.
But there's visibility to what just happened
because you're in a wheelchair from this paralysis,
and people can see you're in a wheelchair.
"You're in a wheelchair.
Okay, I get it.
You're in a wheelchair. I can see that."
And you're thinking, "You know what?
I'm still gonna change the world.
I got these dreams and stuff.
I can do it from a wheelchair," right?
I mean, in Colorado you can do sled hockey,
or you can do skiing or rugby.
You know, a wheelchair doesn't necessarily
limit a person, but--
(child in audience speaking indistinctly)
Yeah, exactly right.
So, but what happens is,
what if there's these things like pain?
You know, what do you do with the pain, right?
The pain's not going away.
You're diagnosed with multiple sclerosis
but there's this pain.
You can't figure out that out.
And as the pain comes along,
there's this diagnosis of Lyme disease.
And what is this crazy thing?
And it's been going on for 14 years, you know.
Here you are 28 years old
and you're not able to work anymore,
and you're not able to do these things.
So what happens?
You start to become invisible, okay?
Oh, you lost one of the shoes, even.
You start to become invisible, right?
Because what happens is all those people that are like,
"Hey, I'm gonna be behind you.
I got you, I got you."
All of a sudden they're like, "Well, wow,
it's going on for like months and months and months
and years and stuff.
I don't know how to deal with it."
So says, "I don't know what to do."
Guess what I don't do? Anything.
So I kind of move on.
But, you're still here.
Chronic is not always necessarily fatal.
So chronic could be like 50 more years of your life.
You don't know that.
But your dream was always this, you know,
"Hey, I wanna show people how amazing I am."
So when you get a chance to go in public,
you do it all up.
Bling, bling, bling, big time, right?
Okay, I bet you didn't even know these shoes existed.
No, they weren't done with the Bedazzler either.
I mean, these are the real deal.
And bummers, they don't make 'em anymore.
But you wanna show people,
'cause your shoes are important, right?
It's what you showed.
You know, these are all these things
and you want people to see you.
You do exist.
They just don't know you exist anymore, right?
So you get the opportunity
and you get married.
Cool, right?
Because you've been able to walk again, now.
I mean, you got used to your legs,
and you get married,
and you think, "Okay, I got some dreams here.
I'm gonna be a wife, and gonna get married
and it's gonna be a..."
you know, what does that look like, right?
And the person you married,
do they know what they're signing up for?
Probably not. Okay.
So we kind of move down, right?
But life goes on,
days and months and years and years go on.
And all of a sudden those dreams of...
You can't do it anymore, you know.
People talk about being disabled.
It's really when you're unable to do things, okay?
You wish you could.
You wish you could go back to this working thing.
In fact, you might even have dreams.
You wake up, you've got a job at the grocery store,
and you're all excited.
You're like, "Wow, I got a job."
And you wake up and it's like, "Darn it.
My life is not about that anymore
and I wish I could do that."
And people will say,
"Well, you know, you're lucky you don't have to work."
And you're like, "Well, lucky, you know,
you're standing too far from me
for me to get too close to you."
So those things happen,
and then you think, "You know what?"
But you do have a little love in your life.
And your love in your life is you love safari, okay?
I mean, come on, who doesn't love animals, right?
A trip to Animal Kingdom down there, and Disney World.
Or maybe...
But you'd love to go on on safari
because you just love animals, right,
'cause animals love you unconditionally.
Okay, and so you got this,
you think, "You know what, I want these in public too.
'cause I want people to know that I love animals," right?
So you kinda, you work through that.
But you can't go on safari, right?
You see all these safaris and you can't go on safari
'cause it's just too far to go to Africa, right?
So you get animals yourself, right?
And maybe you get, you move in the country
and you get a couple goats, right,
'cause goats are cool, okay?
You know what's great about goats?
They love you, okay?
And maybe these goats are named Pumpkin and Cookie, right?
Like, who names their animals delicious names, right,
Pumpkin and Cookie?
And Pumpkin and Cookie actually become therapy goats.
Okay?
So they actually become goats
because they love to cuddle,
and they know that now mommy,
who know, can't have children on her own,
they become her children and they become her friend, right?
Because she's got nobody.
Everybody's abandoned her.
They've left her, and she's out there all alone.
And so what is life like today?
Yes, it's fuzzy pajamas and slippers, okay?
Good thing Walmart exists with millions
of different kinds of fuzzy pajamas, okay?
But this is what your life is now.
It's at home. It's trapped.
It's your lifeline is to the world through the internet,
through Millions Missing.
I mean, that's what happens is like,
"That's my community now."
And this is, and this is what it's about.
It becomes this,
'cause you're missing,
and you're missing, you're not here today.
So my wife, Sherri's not here today, okay?
She couldn't make it.
This is too hard for her today to come here.
And yes, these are all her shoes.
I couldn't believe I found them.
(audience chuckling)
And we're missing here, right?
Imagine living with an illness that people can't see.
I mean, many of you imagine that.
You're like, "Nobody can see what I'm going through."
But when they find it even harder to believe it,
when you share with 'em and tell 'em this is what it is.
You know, it's ME. It's grounding fatigue.
It's multiple sclerosis.
It's fibromyalgia.
It's Lyme disease.
It's all these different illnesses.
It's PTSD.
It's multiple chemical sensitivity, okay?
But people don't believe it.
You know, give an example,
like multiple chemical sensitivity.
That's another one of those names.
It's like people who are ill from chemicals,
but sensitivity?
No, deathly ill, but we use this term,
oh, we call it sensitive, right?
It actually makes 'em really sick.
And what's the main cure for something like that?
Avoidance.
Wow, how cool is that?
You try not to be isolated
and the only thing you can do
is avoid people that are wearing it.
So you actually have to be isolated to be around it.
And you become out of sight, out of mind, right?
That's what happens.
And all of a sudden, your friends,
yeah, hey, I always call it the 13-week club.
They hang around for 12 weeks
and at week 13 they're like gone,
because that's all we can handle as humans.
You know, it's kind of that old thing
of how do we keep going?
How do we keep on that?
But you become out of your...
You know, you put it out of mind.
You become isolated alone.
You get disregarded, right?
I mean, you may spend a half an hour sharing with somebody
and they're like, "What's your problem?"
And you're like, "Well, let me tell you."
You spend a half an hour with 'em,
and they're like, as we mentioned earlier,
"Yeah, well, I'm tired, too," you know.
You mean you're tired because you went to the zoo
and you went to the...
(indistinct due to siren in background)
"You're tired because you did things.
You're not tired because your bones ache
and your body aches," and they don't get it.
So, but what if you have ME,
or you have multiple chemical sensitivity,
and you have Lyme disease,
and you have multiple sclerosis,
you have PTSD and you have all these things
and people think, "Oh, you're just crazy."
No, these are real things that you have.
It's more than one.
And still, we don't believe people.
They just spent a half an hour
telling you what they're going through
and we don't believe them.
Yet if we would only believe them, right?
Right?
I mean, that's what we wanna do, is we wanna...
Come on, we need to believe people.
This is why Invisible Disabilities was started, right?
That the organization was started
because people didn't believe.
We park in disabled parking
and people would scream at us.
They're like, "There's nothing wrong with your wife,"
And they'd scream at you.
And we wrote a pamphlet called,
"Don't Judge by Appearances,"
because the person standing in front of you
(indistinct due to background noise)
That you're great, you're trying to defend them.
Maybe that person right there
that you're really trying to defend
and you need to listen to them.
But the story goes on and on around the world, right?
This is why the Millions Missing is around the world.
This is a world thing.
It's not just here in the U.S.,
but it's all around the world.
So our organization is...
Our desire to really encourage, educate, and connect.
(loud siren in background)
I hope that's person's okay, right?
And I hope they get to 'em on time.
So we're about encouraging and educating,
connecting people, right?
It is about connection.
You know, it's about having a Facebook page
and people connecting
because you need a place where you can go
and say, "Hey, this is what I'm going through."
You need a connection.
But we're trying to look at the deeper roots
of society as an organization.
Our organization is not about finding a cure of the illness.
What we wanted is (indistinct due to siren in background).
Because if your friends and family don't believe you,
how are they gonna help you get help?
If they think you're making this up,
how are they gonna help you, right?
So somebody needs to come in and do that.
So that's what we're really trying to do.
We're here to support the millions
that are missing, right?
All these here, these here,
these people that are missing, right?
And their caregivers, right?
I mean, the reality is you didn't sign up up for it either.
Okay, maybe I did sign up for it,
but I didn't know what was I was totally signing up for.
I just knew that there was this blonde,
and I was like, okay, smart, funny, gorgeous.
What do I know? Right?
And amazing.
So I did sign up for that, okay?
But I didn't know, we didn't know,
we didn't know what the whole thing was gonna be.
We thought, "Hey, she's gonna be back to work
and dancing and singing in like a year
or something like that."
We don't know.
But the reality is, is that the caregivers,
we wanna have an opportunity--
(indistinct due to background noise)
Right?
To make changes in our society, right?
Because our society needs to say it is real.
If somebody shares it with you, it is real.
Acknowledge what they're going through.
Gee whiz.
You know, nothing's worth being stuck in your home, right?
You know, so I brought one more pair of shoes here.
Okay?
And these shoes are my trail runners, okay?
And the reason why I got trail runner shoes
is because it's a journey, a lifetime journey of running.
It's a lifetime journey of trudging
and climbing and all these things.
So you gotta have trail runners with good soles
and the ability to keep things moving along.
And because the millions that are missing,
while we want it to seem is that they are invisible no more.
That's our vision as Invisible Disabilities
is that you would be invisible no more.
That means that your story would matter.
That people wouldn't come to you
and think you're any different than anybody else.
Yes, you're going through difficult times.
Incredible difficult times.
But we should treat you like you're
an amazing part of this human race.
We should treat you the same.
So that's why I've got these.
And we actually made these cool little badges for a reason.
I live with an invisible disability, right,
'cause people say, "Well I don't have
an invisible disability," right?
I mean, (indistinct) what's that?
Right, and that's what they're gonna ask you.
What's cool is you pull these little cards out
and it's a definition of invisible disability,
and you give it to 'em, right?
Because having to explain it sometimes
is part of the battle, right?
And so, I'm so thrilled to be here today.
We founded Invisible Disabilities here in Colorado.
I'm excited to be here in our home state.
And so thrilled to see what you guys are doing
with Millions.
You know, I've been watching Jennifer Brier
and the whole, the amazing story of unrest
and all those amazing things.
But really, you know, this is visibility.
And as an organization,
our goal is to make sure
that you have huge visibility, okay?
And I'll share you something that's very exciting.
We haven't shared this public here really yet,
but the state of Alaska has adopted our logo
on state IDs and state driver's licenses
to show visibly that you have an illness.
And we are gonna go all 50 states for this, okay?
(audience cheering and applauding)
Because nothing's worse than your child with autism
to be told that they're just acting up.
And you can show them an actual state ID
that has a logo on it.
Says, yeah, you know what, this is real, okay.
And so we're so excited about that.
But we're so excited about coming alongside
the other organizations 'cause you guys
are doing amazing research
and all those things to help support,
and we're gonna support you too.
So thank you so much.
(audience cheering and applauding)
(upbeat music)