♪♪ ♪♪ [ Birds chirping ] [ Indistinct conversations ] -With us today is Ady Barkan.
We have a picture of Ady's beautiful family here today, and I'm sure your son is incredibly proud of you.
If you recognize Ady's name, it's because he's been fighting like hell for his life and for all of ours.
I can't do Ady's story justice.
I will let him tell it.
Mr. Barkan, and the floor is yours.
-For 20 years, since I was a freshman on my high school debate team, I have been giving speeches, but never before without my natural voice.
Never before have I had to rely on a synthetic voice to tell the details of my personal story.
Three years ago, I felt like I had reached the mountaintop.
♪♪ I spent my career as an activist fighting for causes like this one, and I had a dream job working for social justice.
[ Cheers and applause ] Hey.
So, my name's Ady Barkan.
I'm the campaign director for Fed Up, which is our national campaign for a strong economy.
So we're here to raise our voices and to make sure that the perspectives and opinions and experiences of working families and communities of color all around the country get heard.
-All communities deserve good jobs and decent wages.
[ Cheers and applause ] -Let's give it up to all of you for being part of this movement for worker, racial justice, and economic justice.
[ Cheers and applause ] -I now pronounce that you are married.
You may kiss.
[ Cheers and applause ] -Rachael and I were college sweethearts.
She got a new job as an English professor at the University of California, so we moved to Santa Barbara right before we got married.
She's an amazing partner because she is brilliant and she laughs at my jokes, even when they're stupid... [ Laughter ] ...and she tells me, "Stop making stupid jokes..." [ Speaking indistinctly ] [ Laughter ] And then our son, Carl, was born.
[ Singing indistinctly ] Carl, you're going the stairs for the first time!
[ Laughter ] That's great!
[ Carl laughing ] Having Carl brought us even closer together.
We are about to give Carl his first bite of solid food.
We were so in love with him, and right away, we started talking about having another baby.
-[ Laughs ] -Are we rolling?
This slipped over.
Like any good husband... -[ Laughs ] -...I forgot that today is our one-year anniversary since we were married.
Um, and that wedding was incredible.
It's really been 11 years that we've been together.
Our 11th anniversary, on September 30th, was our last night before we got the first preliminary suggestion that something was really wrong.
[ Insects chirping ] I was diagnosed with ALS today... ...which is a... ...deadly, debilitating disease for which there is no cure and very little treatment.
So I can't sleep.
I'm reading about the disease, about living with ALS.
Although I am... so sad and so scared... [ Mid-tempo music plays ] ...I really, really want to make the best of what I have left with the people whom I love and who love me.
♪♪ ♪♪ ♪♪ -Can you fix his hair a little bit more and fix his collar?
-We can always fix his hair a little bit more.
[ Laughs ] ♪♪ [ Laughs ] ♪♪ -[ Laughs ] ♪♪ ♪♪ [ Vehicles passing ] -Hi.
Nice to see you too.
Nice to see you, Rachael.
How are you?
-The deterioration, as you can hear... -That's what I was reading.
-This most recent test that they did showed a decline.
-You may need a tracheostomy in order to maintain your airway.
-It's a hard trade-off.
Some patients say, "You know what?
I am fine with getting a tube to help me eat, but I would never want something to help me breathe.
I wouldn't want a tracheostomy."
And right now, your respiratory function has only started to decline, but it's something that we've put to the forefront earlier on so that you're thinking about it... -I wasn't exactly thrilled about extending my life without the ability to eat, speak, or breathe.
[ Mid-tempo music plays ] When I was diagnosed, they gave me three to four years to live.
The next month, Trump was elected president.
I realized that the country was, pardon my French, totally...
But I was in no place to return to activism.
♪♪ The only thing that brought me joy was spending time with Rachael and Carl.
And for brief moments, I could forget about my illness.
[ Laughs ] ♪ And I think to myself -- ♪ [ Laughter ] -♪ What a wonderful world ♪ ♪ I see Carls of white ♪ ♪ And Carls of blue ♪ ♪ The bright blessed day ♪ ♪ The dark sacred night ♪ ♪ And I think to myself ♪ ♪ What a wonderful world ♪ Good job, Carl.
[ Birds chirping ] [ Carl singing indistinctly ] Hey, Carl, do you have a bill?
How much is that for?
[ Carl coughs ] Look.
How much is this for?
That's the ventilator.
So they want to charge you.
-Invoice number 7... -And something something.
[ Mid-tempo music plays ] -The knowledge that I was dying was terrible, but dealing with my insurance company was even worse.
They denied coverage of a breathing machine that I desperately needed, calling it "experimental."
I decided to find out why.
My doctor's office said that in 60 years of prescribing this machine, they'd never once seen a denial.
Why was the machine deemed experimental?
-We are very sorry for your frustration.
We are not in business to create frustration.
That's not what we... -I already knew America's healthcare system was broken.
But I was experiencing its brokenness personally for the first time.
Then Republicans in Congress proposed a tax bill that would cut our healthcare system even further.
I realized I couldn't stay quiet any longer.
♪♪ ♪♪ -There is a chaotic rush right now to ram through a tax-cut bill.
This bill and the key Obamacare insurance mandate affecting up to 13 million people.
-Still no indication how Senator Jeff Flake will vote.
He says he still has the same concerns -- [ Television turns off ] -Oh, there's the money shot.
-I don't think I can do this anymore.
Ready to rumble.
[ Indistinct conversations ] We're here in Washington, D.C., trying to stop this bill.
I have ALS, which is causing me to become paralyzed quite quickly.
And as a result, I'm using a wheelchair.
My voice is no longer as melodious as it used to be.
To Senator Jeff Flake, you don't have to do this this way.
I understand that you want a tax cut.
I understand that you are conservative and I am not, and that's okay.
But you can get a tax cut without ripping healthcare away from tens of millions of people.
-This is Ady Barkan.
How are you?
-My name's Ady.
So, can I ask -- As you know, this bill is gonna cut Medicare and destabilize the entire national health insurance system.
He's still in the process of reviewing it.
He hasn't made a conclusive decision one way or the other.
We're, uh, we're grateful for you guys stopping by, though.
-Well, so let me tell him this -- A, We are human beings.
We all have dreams and hopes and love and relationships, just like he does and just like you do.
And message number two is if he votes for this bill, he will lose his job in 10 months.
So that's his choice.
-♪ Maxine Waters, this land was made for you and me ♪ -Our representatives weren't listening.
My voice was fading... -♪ ...that ribbon of highway... ♪ -...and it was time to head home.
[ Mid-tempo music plays ] Then, right as I was boarding the plane, I overheard a woman talking a mile a minute about politics and viral videos.
-When I first met him, he had been eavesdropping on my conversations.
Like, "Who the...is this?"
But it was, like, weird.
It was like this weird electricity.
-Turns out she runs political campaigns for underdog candidates.
And we had a lot in common.
-He said, "I was protesting the tax bill," and just before that, I had seen Senator Jeff Flake go on the plane.
I said, "Why don't you talk to him?"
He's like, "Will you film it?"
And I said yeah.
[ Engines humming ] [ Down-tempo music plays ] -Liz came up with a great hashtag... ...and the video went viral before the plane even landed.
-My next guest made headlines when he confronted a Republican senator on an airplane.
Ady Barkan is a 33-year-old attorney.
About a year ago, he was diagnosed with ALS.
-I was in search of a story that ended in something more than tragedy.
Paul Ryan, I'm gonna knock on your door.
[ Door rattling ] Liz and I had just met, but we made a good team.
We decided to try and start a movement.
We started to plan a 40-day, 18-state tour to flip the House in the upcoming midterm elections.
-These are the districts, and these are all of the incumbents.
So the idea was to stop in each of these key, critical districts that could be flipped.
If they voted for the tax bill, if they voted to cut healthcare for people like Ady, we would replace them.
-Some observers would say that you're exploiting his disease for political gain.
-Come sit on my lap.
[ Wind blowing ] -Ooh.
That's a fancy one.
Look at that airplane.
Wow, wow, wow.
-I'm pretty torn about Ady being gone for so long.
Where did it go?
Is it better to be here with me and Carl and making the most of, you know, whatever amount of voice he has left?
It's great for him to get the chance to do this, but hopefully he doesn't get too exhausted, because, you know, it's not just like us when we get tired, that we need to rest and sleep, but he actually has a lot of trouble moving when that happens.
[ Machinery whirring ] -Blow as hard as you can.
Blow, blow, blow, blow, blow.
Go, go, go, go.
[ Down-tempo music plays ] I've got a lot to say and not a lot of time left to say it in.
-What is Abba doing?
-Carl -- Yeah.
-Nate, if you tilt it back, there are wheels.
The only thing I can do now is boss people around.
I can't do anything for myself.
-[ Laughs ] -Carl!
[ Laughter ] I'm nervous.
Will my recliner fit in the RV?
-I have like an inch.
-Holy... -It's happening.
[ Laughter, applause ] [ Rattling ] -Whoo-hoo-hoo.
[ Down-tempo music plays ] -Uh, you want socks and shoes on?
I love you.
-[ Laughing ] Love you.
[ Insects chirping ] [ Machinery whirring ] [ Up-tempo music plays ] -We're rolling.
-Healthcare activist Ady Barkan is battling ALS, and he's been asking voters to be his hero and vote for candidates who will protect healthcare.
♪♪ -Thanks for coming.
Nice to meet you.
I'm a local doc.
I heard you were gonna be here today.
-Welcome to Arizona.
What are you doing here?
[ Vehicles passing ] -Yeah.
She's pretty good for an amateur.
-It takes time to learn how to dress a big boy.
-[ Laughs ] All right.
We're doing it.
Thank you so much.
-No, I think I'm at the right one.
-This is McSally, right?
This is not a government office, though.
It's the campaign office.
-So, when... -Sir, I'm sorry.
...when voters want to hear from -- That's okay.
[ Lock clicks ] We have two Arizona constituents right here, They're making decisions that are having huge negative impacts, and they won't even listen to our voices.
[ Birds chirping ] -Yeah.
I'm gonna push back and say some of the little stuff is gonna be more powerful than the big stuff.
People telling their stories is one of the key parts of this.
These online videos are what drives the whole campaign.
[ Mid-tempo music plays ] If you're willing to come and help us out for an hour or two tomorrow, that would be huge.
And then he can come and speak and he can just say, "We're so excited to be having a campus kickoff with Ady Barkan."
And then I have USA Today.
That's later this afternoon.
That is great.
[ Laughter ] -Answer the question!
-Answer the question.
[ Indistinct conversations ] -You know, it's just so important.
I know that -- Because you probably also have a pre-existing condition, don't you?
And you have wonderful coverage.
-Thank you again so much.
-I just really hope that you would be able to commit as the people ask.
[ Applause ] -All right!
[ Cheers and applause ] [ Mid-tempo music plays ] -I'm not familiar with them saying they want to cut anything.
♪♪ -People who are in his district will die because of the way that he votes.
♪♪ -He has never once in the past two years had a town hall for his constituents.
-We'll schedule a meeting, and we'll do it in a nice, civil, respectful, professional manner.
♪♪ ♪♪ [ Insects chirping ] -Oh, yeah!
Is it good?
[ Laughs ] -Olives!
-[ Laughing ] I love you too, sweetie.
[ Down-tempo music plays ] [ Vehicles passing in distance ] ♪♪ ♪♪ ♪♪ ♪♪ -When do you think he needs to do his next physical therapy?
-You know, I would say as often as he has time to get in, just being able to maintain his range of motion and flexibility as much as possible.
-Oh, I'm sorry.
That's a brutal schedule.
[ Birds chirping ] -So great to finally meet you.
-It's nice to meet you.
-Thank you for coming.
-Give me a hug.
We're working hard on growing a human.
That's so exciting.
[ Indistinct conversations, machinery whirring ] -It's really awesome to meet you.
-It's nice to have other people our age.
It's hard to be younger with this disease.
-It's the first time I've really felt like I wasn't included in the people our country cares about.
-And it's easy to think it shouldn't be as bad or getting a wheelchair shouldn't take four months, but it really does.
-And so we're really glad that you're out there speaking about it, because it's hard enough just to live every day, let alone advocate about it.
-It's really -- I don't want to say inspirational, because everybody says that, and it's super patronizing.
-It's a labor of love.
-So, you guys are 10 weeks away from a baby.
-I appreciate you saying it's really happy and terrifying, because that's, like, exactly how it feels.
And I think when we decided to have a kid, we waited almost a year after Jake was diagnosed, and as it gets closer, it gets more real and terrifying.
But I also think it's like a leap of faith, of saying, "I don't just want to live in fear, and I want to find joy and happiness, and we'll figure it out."
Jake's a little better at that than I am, which is good.
-It's that we want to not be afraid of living our lives because of the disease.
-Look at this hair.
He has to shower.
I can't deal with a talent like this.
-The ladies need to love him, and it's rough right now.
This is a rough situation.
-Hell, yeah, dude.
-[ Laughs ] -All right.
How do we do this?
One, two... -Hey!
Are you Liz?
-See where the tower is?
-So, that's the front doors.
So we'll follow you, and then we have a delegation of six of our key activists who have been working on these issues.
They don't like protesting here.
It's govern-- You know, it's the private airport, and it's the only place where his staff are located.
-Do you want to rest your voice?
We're gonna rest for a little bit.
-Such a pleasure to meet you.
I have Stage IV colon cancer, so I'm in there... [ Laughs ] ...fighting the fight for everybody.
I'm like Ady.
I just fight.
[ Laughs ] I just keep fighting.
-We're gonna say, "We're here to see Peter Roskam," and they're gonna say, "No cameras.
They're gonna keep trying to push that.
Say, "Why can't these things be transparent?
The people need to see."
You got it?
-I think this is a pretty nice event.
-Look at you.
You're less skeptical of me.
[ Crowd cheering, indistinct talking on megaphone ] -What do we want?!
-When do we want it?!
-What do we want?!
-When do we want it?!
-All right, everyone.
He's coming out.
Let's all go up.
How are you?
-My name is Veronica.
I'm with the congressman's office.
-Pleased to meet you.
-Now, we're not gonna -- we're not gonna have any press or media or cameras allowed.
It's a public office.
-It is our -- It is our longstanding policy when we have meetings that we don't -- -My longstanding policy is called the First Amendment.
-I understand, and you have -- We respect your First Amendment rights.
Let's meet right here with the cameras.
Alison, why are you here today?
-I've been incredibly frustrated by the lack of response from Peter Roskam.
Even when I've made phone calls to his office, the discourteous way I've been treated by members of his staff has been a continual source of frustration.
-The congressman is very clear that he supports protecting pre-existing conditions, um, in any -- -No!
-I do encourage everybody to please contact our office if you want to have a meeting.
Thank you very much for your time.
[ Crowd booing ] -This is what it means to live in a democracy, right, is to do something when we're dissatisfied with the results that we're seeing.
[ Mid-tempo music plays ] -One of the things we're trying to capture are people's personal stories and then use Ady's platform to lift those up.
-My son is 34 years old.
He has disabilities.
What is gonna happen when I die and my child is left to a society that no longer cares?
-We really do appreciate your coming.
-Loving each other, taking care of each other -- That was once the American way.
We've got to get back to that.
[ Toothbrush buzzing ] Come on, folks.
We're gonna build a society that we can be proud of.
[ Cheers and applause, drum beating ] All right.
[ Mid-tempo music playing ] ♪♪ ♪♪ Tomorrow you've got an interview when we have a rally at 3:00.
-I thought tomorrow was a rest day.
-Well, every day is a rest day.
Hope is a hammer... Hope drives us... Hope... [ Insects chirping ] [ Toilet flushes ] -We did see a big one take off, yeah.
And we saw some little ones, too, right?
-I love you, Abba.
-I love you too, Carl.
-See you soon.
-At the end of my life, when I look back on this moment... [ Keyboard clicking ] ...I want to be proud of what I've done.
[ Keyboard clicking ] [ Laughter ] -Stop.
-Did you just make a vegetable joke?
-We're not -- Why?
-I'm not ignoring the inevitable, which is why you get to have such a long...speech!
Every time you say that, yet you're still here.
There's like 2,000 people in there losing their... Yeah.
[ Indistinct conversations, mid-tempo music playing ] -Hey.
♪♪ [ Applause ] -Thank you so much.
It is an honor to now introduce Ady Barkan.
[ Cheers and applause ] -I am traveling across the country asking Americans to be heroes in this dangerous moment.
My voice is weak.
But when I join with you, when we bring our voices together, we can be heard loud and clear.
[ Cheers and applause ] Can you hear us, America?
[ Cheers and applause ] [ Mid-tempo music plays ] At the end of my life, when I look back, I want to be proud of what I have done.
I am willing to give my last breath to save our democracy, and I'm here to ask you -- What are you willing to give?
[ Cheers and applause ] I believe that we will win!
-I believe that we will win!
[ Clapping rhythmically ] I believe that we will win!
I believe that we will win!
I believe that we will win!
I believe that we will win!
[ Cheers and applause ] ♪♪ -That was really intense.
I really do.
I love you, too, Ady.
[ Indistinct conversations ] [ Machinery whirring ] -I can't believe this is our last night.
-[ Laughs ] -I'm gonna give it to Ady.
Give it -- Give it to Ady.
Give it to Nate.
-This is ALS-friendly s'mores.
Kind of amazing.
[ Chuckles ] -Nice.
[ Laughs ] What the... [ Laughs ] [ Door opens ] -What the hell is going on in here?
What did you do to him?
-I'll see you later, when you're done ragin'.
I'll see you tomorrow.
-Are you okay?
Do you need stretching?
[ Chuckles ] [ Birds chirping ] [ Child babbling ] [ Laughter ] [ Applause ] [ Laughter ] -Power to the people.
[ Cheers and applause ] [ Down-tempo music plays ] -He is truly an American hero.
♪♪ ♪♪ -♪ A, B, C, D, E, F... ♪ -[ Laughs ] -Boom!
-[ Laughs ] -♪ W, X... ♪ -Y and...boom.
-[ Laughs ] [ Explosions echoing ] -Wow.
-It is my honor and privilege to announce that I will nominate Judge Brett Kavanaugh to the United States Supreme Court.
[ Applause ] -.... -He will solidify a conservative majority that is expected to last for decades.
-This is bad news for healthcare.
[ Mid-tempo music plays ] [ Laughter, applause ] -We demand healthcare for all!
We say no to Kavanaugh!
We demand healthcare for all!
We say no to Kavanaugh!
[ Crowd chanting in distance ] -How are you?
-Good to see you.
-So good to see you.
[ Indistinct conversations ] -The system is corrupt.
-The system is corrupt!
-And that's why we disrupt.
-The system is corrupt!
And that's why we disrupt!
The system is corrupt!
And that's why we disrupt!
The system is corrupt!
[ Indistinct talking on radio ] [ Mid-tempo music plays ] -The bombshell accusation is rocking the confirmation process.
-This morning, new scrutiny of Supreme Court nominee Judge Brett Kavanaugh.
-Christine Blasey Ford claims he pinned her to a bed and groped her.
Some Republicans, like Senators Jeff Flake and Susan Collins, are now saying they need to hear more.
♪♪ ♪♪ -I thought Ady was going to speak, and he turned to me, and he just said, "No.
Senator Flake has an opportunity to be a hero and to protect democracy, to make sure that we do not continue the long tradition in this country of ignoring the violence that women endure from day one.
I myself... [ Indistinct talking on radio ] ...know about that violence.
I was 5.
-Get out of the hallway.
-He was 15.
-Get out of the hallway.
Get out of the center of hallway.
-You guys are gonna have to move against the walls.
-I was 5, and he was 15.
I told one person, and they did not believe me, and I learned the lesson -- that we are not believed when we tell our stories.
I want to make sure that in this country, we believe people who experience sexual violence.
-Get out of the way!
[ Voice amplified ] This will be your second warning.
-Senator Flake, this is not even a heroic act.
[ Camera shutters clicking ] Just vote no.
[ Down-tempo music plays ] ♪♪ ♪♪ -I didn't realize... -I didn't realize... -...at the time... -...at the time... -...that that was rape.
-...that that was rape.
-I expected the police... -I expected the police... -...to believe me.
-...to believe me.
♪♪ -The system is corrupt!
And that's why we disrupt!
-We knew Senator Flake might be the one that could vote against Kavanaugh.
We went back to Senator Flake's office.
He was running to the elevator.
I told the story of my sexual assault.
I told it because I recognized in Dr. Ford's story that she's telling the truth.
What you are doing is allowing someone who actually violated a woman to sit in the Supreme Court.
This is not tolerable.
What are you doing, sir?
-You can be a hero today.
-Be a hero.
[ Camera shutter clicking ] -Ana Maria Archila, you're very brave.
A lot of people confronted with that opportunity would not have jumped in and seized that moment.
This is what activist leadership looks like -- when they say, "Look me in the eye when you're making decisions that have an implication on my life."
-Be a hero and vote no!
Be a hero and vote no!
-[ Chanting, clapping ] Vote no!
-This country's being ripped apart here.
I do think that we can have a short pause and make sure that the FBI can investigate.
-I love you.
But you know, like, all of us are learning these with you, through you.
[ Birds chirping ] [ Carl speaking indistinctly ] [ Carl speaking indistinctly ] -[ Crying ] -Stop.
You got to put your -- I've been telling you it's time to put your pajamas on.
So it's time to put your pajamas on now.
[ Crying continues ] Let's put your pajamas on.
[ Ady speaking indistinctly ] -And get big?
-[ Speaking indistinctly ] -[ Laughing ] And head-bang.
-[ Speaking indistinctly ] -...and spare me the ability... -[ Speaking indistinctly ] -...tickle -- to tickle and... -[ Speaking indistinctly ] -...chase him?
Are you able to control anything with your eyes right here?
[ Computer beeping ] -This is halfway towards being a cyborg.
[ Laughs ] -"...but the zillow on my pillow always helps me fall asleep."
-You going to sleep?
[ Laughs ] Are you ticklish?
I don't think you're ticklish.
I'd better check.
[ Both laughing ] -[ Laughs ] You tickle me, Mommy.
-Let's tickle Abba.
-[ Laughs ] -Under here.
-[ Laughing ] -Too much?
At Carl's parent-teacher conference, Ingrid had a book about, like, a mom in a wheelchair, and she said that when they read it, Carl was like, "Oh, that's like my Abba."
[ Laughs ] 'Cause in the book, they, like, zoom around together.
I feel like he's been he's been really sweet with you lately, like he's been giving you a lot of cuddles.
-[ Speaking indistinctly ] -He's ridiculously outgoing?
I feel like one thing he does that's really like you is that...he, like -- He, like, pushes right up to the edge of what people are gonna take and then... he goes over it.
[ Laughs ] You used to do that a lot.
No, he definitely has a lot of your personality.
That's for sure.
Which is very nice.
That's, I think, much better than... being a shy, bookish introvert.
[ Both laugh ] -We begin with the midterms.
So many races razor thin tonight.
-We'll see you tomorrow.
-See you, guys.
[ Indistinct conversations ] -Peter Roskam has now called and conceded.
A significant... -Huge.
-The big story of the night -- The House is now -- will now be in the control of Democrats in 2021.
-Oh, my gosh!
[ Cheers and applause ] -...necessary to take control of the House of Representatives.
[ Laughter ] -This is a very significant defeat for Mr. Trump.
A historic accomplishment for the Democrats.
-Well... [ Laughter ] [ Mid-tempo music plays ] -It is the beginning of a new Democratic Party -- younger, browner, cooler, more women.
There's something happening out there, and I'm happy about it.
[ Turn signal clicking ] [ Cat meows ] -What's up?!
-Um, seeing your house, I have no idea how you left and went on the road with us for so long.
-I missed you two goofballs.
[ Laughter ] -I like the blue cheese.
-He does like the blue cheese.
-Hold it out.
-Here you go, Abba.
-Here you go, Abba.
-I'm gonna put it right... here.
[ Laughter ] I guess -- This falled over again.
You're doing a good job.
-One of the things we were talking about is, like, he might come and testify in front of the Senate about Medicare for all, right, which should be...amazing.
-The computer is terrible at emotions.
-I don't disagree with that, but I do -- I do think you should do one speech with this.
-What gets lost if somebody else reads the speech?
-What you're doing is, like, you're glossing over a real situation.
And one of the real situations is you've lost your voice, and the way you speak today is you use your eye.
And it's glossing over it if you bring some nice, young, beautiful woman to just chat with you.
Like, "It's really hard for him."
It's just like, that's bull... What's real is this.
And I think you force senators to look at that and to face it.
-This is -- This is powerful.
You want to get Medicare for all passed?
Do it this way.
Well, let's see if they let me testify.
[ Down-tempo music plays ] ♪♪ ♪♪ -You want that chair side by side?
-Yeah, and then we'll just pick him up and go in.
-One, two, three.
♪♪ -What do you need?
Hand -- The neck pillow.
-We already made the swap, so don't worry about it.
I appreciate it so much.
♪♪ [ Indistinct conversations ] -All right.
There you go.
[ Indistinct conversations ] -With us today is Ady Barkan.
We have a picture of Ady's beautiful family here today, and I'm sure your son is incredibly proud of you being here at the first-ever Medicare for All hearing.
And at this point, I will yield to Ms. Lesko.
-Well, thank you, Mr.
This is a very partisan bill, uh, and I'm sure that you know that most if not all Republicans in the House are probably going to vote against it.
So, you know, I don't know why we're doing this, but you know, we are.
So here we are.
So -- -Congresswoman Lesko, you said you're not sure why we're doing this hearing.
First of all, if you don't remember, I want to remind you that we last ran into each other in Arizona during your election -- that time when I asked you about Paul Ryan's plans to cut Social Security.
You had no idea what I was talking about.
Well, it seems you have chosen to not get your facts straight today either.
Why are we having this hearing?
To keep people alive.
-Um, I do believe we need to have high-quality healthcare at a reasonable cost.
-Well, I -- -Thank you.
Mr. Barkan, the floor is yours.
-Chairman McGovern and members of the committee, thank you for inviting me to testify today.
I am 35 years old, and I live in Santa Barbara, California, with my brilliant wife, Rachael and our beautiful toddler, Carl.
[ Down-tempo music plays ] Every month since my diagnosis, my motor neurons have died out, my muscles have disintegrated, and I have become increasingly paralyzed.
I am speaking to you through this computer because my diaphragm and tongue are simply not up to the task.
Although my story is tragic, it is not unique.
In many ways, it is not so rare.
Every family is eventually confronted with serious illness or accidents.
On the day we are born and on the day we die and on so many days in between, all of us need medical care.
And yet in this country, the wealthiest in the history of human civilization, we do not have an effective or fair or rational system for delivering that care.
Our time on this earth is the most precious resource we have.
A Medicare-for-all system will mean more time giving high-quality care.
And for patients and our families, it will mean more time doing the things we love together.
[ Music continues ] And so my closing message is not for the members of this committee.
It is for the American people.
Join us in this struggle.
Be a hero for your family, your communities, your country.
Come give your passion and your energy and your precious time to this movement.
It is a battle worth winning for my son, Carl, for your children, and for our children's children.
This is our Congress, this is our democracy, and this is our future for the making.
-He's a 35-year-old organizer who was diagnosed with ALS, an irreversible degenerative neurological disease.
-Ady's testimony was life -- was game-changing in terms of the whole context of the hearing.
[ Down-tempo music plays ] -The emotional testimony of Ady Barkan... -Incredibly powerful testimony today from activist Ady Barkan.
Barkan has continued his activism through his illness.
-Now, I want to have a chance to tell the story about my friend Ady Barkan.
-Speaker Nancy Pelosi even thanking Ady for helping win back the House for Democrats.
-He's been an activist and an organizer all of his life.
Fought to save the Affordable Care Act.
He's fought to stop the tax cuts.
He fought to stop Kavanaugh.
[ Cheers and applause ] Please give him a big hand.
♪♪ -Ady, I'm honored to be able to give to you the Power Award.
[ Cheers and applause ] -The paradox of my situation is the weaker I get, the louder I become.
-[ Chanting, clapping ] Ady!
[ Cheers and applause ] -Now that people are listening, Liz and I demanded the presidential candidates meet with me to talk about healthcare.
The crazy thing is it worked.
-Senator Booker, as president, will you push to expeditiously replace the private health insurance model with a single-payer model, or will you push for a more limited expansion whereby some people will have Medicare and others will have private insurance?
-I... -Senator Harris, your plan has a 10-year transition period until it is fully enacted.
Why do you think the transition should be so gradual?
-I think he is much more tired.
He's getting iller, and it's not as easy as it used to be.
-If Democrats do not take back the Senate, what will President Sanders try to accomplish by an executive action?
-You need to eat, man.
I know you don't want to, but you have to.
-The insurance industry and pharmaceutical corporations will throw everything they have at blocking progress.
How do you plan to fight back?
-So... -Liz, I don't feel well.
I don't think I can do this next interview.
[ Machinery clicking, air hissing ] [ Monitor beeps ] -I'm having trouble breathing.
I feel nauseous.
[ Siren wailing in distance ] [ Monitor beeping ] I have pushed so hard that I have failed to do what I needed to protect what little health I have left.
I've been doing the hero performance for too long, and I need to take a step back.
[ Birds chirping ] [ Mid-tempo music playing ] ♪♪ -The doctors were ready with the first aid kit, and the helicopter took the patient to the hospital.
[ Music continues, siren wailing ] Thank you, rescue team!
-Lift the ankle up.
Have you confronted any politicians recently?
-I'm leaving that to other activists now, but I have written my memoir.
-Goes on pre-sale in two weeks.
-You are in chapter one.
-[ Chuckles ] Now I'm nervous.
-I asked you then how long my life expectancy was.
You were brave enough to answer, unlike many docs.
You said three to four years.
So now the question is, if I get the tracheostomy, how much will it extend my life?
-There's very little data to put into the equation.
Everybody's ALS is different.
But with the tracheostomy, you can live for a very long time after that.
[ Mid-tempo music playing ] -♪ Hands are for clapping ♪ ♪ Clapping to this song ♪ ♪ Hands are for clapping ♪ ♪ Knees are for slapping ♪ ♪ Let's all slap along ♪ Slap your knees.
[ Music continues ] -Carl is at the age where he's beginning to form long-term memories.
-♪ Teeth are for brushing ♪ ♪ Brushing to this song ♪ -He's growing up so fast, and there's so much more I want to share with him.
-Go like this.
♪ Chh, chh, chh, chh, chh-chh ♪ ♪ Chh, chh, chh, chh, chh ♪ -Carl, Mom has some big news for you.
-[ Laughs ] -Can you tell me?
-Are you gonna have a baby sister?
-That is the news?
[ Liz laughing ] -I'm so happy for you.
I cannot believe she's gonna have a girl.
Are you...kidding me?
We are psyched.
It's crazy, but so is everything else.
-It is crazy.
-Well, we had always imagined having more than one kid.
We had lots of conversations about how ALS does or doesn't change that desire.
-There were lots of doubts.
I think it is gonna be a huge challenge.
Probably my biggest source of support through this has been my sister.
[ Carl crying ] And so that made me really want Carl to have that kind of relationship, too.
-Carl, do you think your baby sister will love popsicles?
[ Laughs ] -She can go to the store with us and get a popsicle.
And we get a popsicle for her.
What flavor do you think she'll want?
-[ Laughs ] -Today is a day I've been dreading for almost three years.
I'm going to get a tracheostomy.
-One, two, three.
[ Down-tempo music plays ] -There are lots of people on ventilators with small kids, and they seem to have fulfilling relationships.
But he won't be able to even talk the very minimal amount that he can now.
He won't be able to eat any food orally.
So last night he had a little bit of spaghetti carbonara as his last food that he ate.
♪♪ ♪♪ [ Monitor beeping, ventilator hissing ] [ Down-tempo music plays ] ♪♪ And a little more.
-Being on this ventilator is made tolerable by the idea that I could spend a decade fighting for justice and watching my children grow up.
-[ Laughs ] -There's a whole world to learn about and more stories than you could read in a thousand lifetimes.
♪♪ -Walking in to have a baby.
[ Mid-tempo music plays ] [ Baby crying ] ♪♪ ♪♪ -Hi.
♪♪ -My dear Willow, you are so new to this world, but I already adore you with my entire being.
And so do your mom and your big brother, Carl.
Mom and I had to think hard about whether to bring you into this world.
We knew that you would not have a carefree childhood, but we decided to be hopeful and brave.
We decided to believe our family can be joyful and at peace.
And despite all the challenges, we decided there is reason to be hopeful for our nation as well.
♪♪ ♪♪ ♪♪ ♪♪ -Whoa!
♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪