Ady Barkan Profile picture
Dec 11, 2017 28 tweets 6 min read Twitter logo Read on Twitter
It’s been a long day. 20 hours of poignant conversations with journalists, parents, and activists about the state of our nation and our prospects for stopping this cruel bill. But I want to talk about my wife, @rachael_scar . And about women. In America. In 2017.
Her name is Rachael Scarborough King. She is a professor of English Literature at the University of California, Santa Barbara. And she is Carl’s mother.
We started dating senior year of college. We had worked together at the campus rag, @ColumbiaSpec. Within weeks, I felt like we were already settled into a long-term relationship. We just fitted.
We spent 11 blissful years together, in Ohio, Oregon, Connecticut, New York, and California. She worked as a journalist while I got my JD. I worked as a lawyer while she got her PhD (in a rapid 5 years). Both our careers were going great.
In fall 2015, we celebrated 10 years together by getting married at the courthouse and having a two-day party with 20 friends. In May 2016, Carl was born. His first scream is still so vivid; I laughed and laughed, overjoyed with relief & love after months of low-intensity worry.
Life was perfect. Our home in Santa Barbara, our chubby newborn, our fulfilling & well-paid jobs, our loving friends & family. We were the happiest, luckiest people we knew. We said it to each other often. So grateful.

And then, the morning after our 11th anniversary, disaster.
I’ll tell the story of my ALS diagnosis some other time. And I won’t talk about my misery and fear and rage and jealousy and self-pity in those first months here either. Because I want to focus on Rachael’s strength.
Rachael had been Carl’s primary caregiver for his first four months. I was supposed to take over (hat tip: good paternity leave) in Oct. & Nov., so she could write her book. But I was too depressed. Spending time with Carl heightened my sense of loss. So she kept caring for him.
I started doing more around New Year’s. Not 50-50. Maybe 60-40? But as the ALS progressed, I became less able. Dressing Carl became hard; then impossible. Carrying him became hard; after one fall with him in my arms, I stopped altogether. Then I couldn't pick him out of his crib.
My inability to care for Carl is the worst part of ALS. The vision that I won’t be able to teach him to write, play guitar, or box out; won’t teach him about Bayard & Cesar & Lyndon, Eleanor & Rosa & Dolores; won’t dry his tears when he’s down and out, when evening falls so hard.
I was going to be his best friend. We were going to laugh so hard, so loud, for so many decades. I was going to do more than 50% of the child care. Much more. We gave him Rachael’s last name because fuck the patriarchy. Yet here we are.
Today, Carl is cared for by great women teachers at his daycare. At home, Rachael does 90% of the care. Friends & family do 5%, and I do the final 5%. But even that’s getting hard – I can’t chase him, or keep him safe.
I can read, and make great faces, and tickle. But I am a shadow of the father I wanted to be. And I have so much farther to fall.
And, of course, now she’s caring for me too. 20 times a day, I ask her to bring me a glass of water or plug my phone in or hold my hand so I don’t fall.
Right now she’s sitting in the other room, waiting to help me take a shower. We’re staying with friends up north. We had to evacuate because of the wildfire smoke. It’s taking me a long time to write this because I’m typing with one hand.
She doesn’t complain. When other white moms whine about a minor inconvenience, she doesn’t tell them to get some perspective. She doesn’t make me feel like a burden. She focuses on the many joys we have, not the many joys we are losing.
Her strength has given me the emotional space to be depressed and scared and sad whenever I need or want to be. She has carried us all.
And she has done this all while being a superstar scholar. During this hard year, she finished her book: Writing to the World: Letters and the Origins of Modern Print Genres.
It's a brilliant exploration of how letters facilitated the rise of the novel, the newspaper, and the biography in the 18th century, and what that history teaches us about media and technology. Available on preorder now!
Speaking of genre conventions, is this thread way too long? It's my first one.

So, look. I really love my wife. And I want you to know that. And appreciate her. And, women: appreciate yourselves. And, men: appreciate the women in your life.
Women take care of my son. My neurologist, my home visiting nurse, our home cleaners: women. This is America. Women do most of our care work, from cradle to grave.
It is the most intimate, difficult, important work there is. And for that privilege they get paid 79 cents on the male dollar. Black women and Latina women significantly less.
And when they’re done working for $, they come home to work for free. Among my hetero friends (nearly all self-described feminists), I know no couple that actually shares the load equally. Rachael and I were going to be different. I was going to be different. The best laid plans.
We’ve seen this year how economic & power disparities in Hollywood, Washington, the media, and academia allow men to harass & abuse women – even relatively privileged white women. What do you think is happening to the Black and Brown women who clean, cook, and care?
This tax bill would make things much worse. It would raise taxes on nurses so that hospital executives can pay less. Raise taxes on teachers and lower them on real estate developers. Eliminate health insurance, raise taxes on the working and middle classes, and enrich the 1%.
We should be going in the opposite direction. Universal free child care (that provides good jobs). Guaranteed humane paid family leave that lets parents cherish that first magical year. Medicare for all.
An America where women get equal pay for equal work. Where parents are celebrated and supported, not stretched to the breaking point. Where men wash the damn toilet bowl at least half the time.
Doesn’t that sound like a better country than one in which my Medicare disability coverage is rolled back, and Rachael has to carry even more on her back? @SenatorCollins @JeffFlake @SenJohnMcCain, I'm begging you, for my wife, and for all America's women #BeAHero #VoteYourValues

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More from @AdyBarkan

Oct 7, 2018
2 years ago today, @rachael_scar and I walked into the neurologist's office. She was carrying 4-month-old Baby Carl on her chest.

We walked out an hour later with my death sentence. ALS would paralyze and then kill me, and there wasn't anything we could to stop it.
How would we persevere? What we do with the short time I had left? How could we find hope in the dark?

These were our personal challenges. But they became questions for the nation a month later when Donald Trump was elected president.
Over the past 24 months, I lost the ability to run, and then even to walk; the ability to cut food, and then even to feed myself; the ability to speak quickly, and soon even to speak at all.

And yet, this journey has been better than I feared. On most days, I am happy.

How?
Read 6 tweets
Oct 3, 2018
Do you want Brett Kavanaugh impacting your life for the next 30 years? If not, you have three days to #CancelKavanaugh.

Here are 5 things you can do. I promise you will be glad you did.

(Please RT to help save our democracy.)
1. Show up at a vigil Wednesday evening.

There are vigils happening all around the country. Find one near you, bring some friends with you, alert your local TV station, and tweet out some photos.

moveon.org/scotus
2. Come to Washington DC on Thurs/Friday.

We all saw what a huge impact @AnaMariaArchil2 had, simply by showing up to the Senate and telling her story. She wants you to join her. 9 am in the Hart Senate Office Building.

There are buses from major cities. bit.ly/WECANWIN
Read 6 tweets
Apr 7, 2018
.@WorkingFamilies comms director @joedinkin has a better answer than these data wonks:

Reject issue by issue silos & instead go for meta themes.

70: Trump is enriching the rich and powerful at the aexpense of ordinary Americas. (Trumpcare, tax scam, gov corruption all fit here)
30: Trump is dividing Americans from eachother & we can't let him do it. (Attacks on immigrants&muslims fit here, so do voting rights, mass incarceration, civil rights, lgbtq, metoo. This is actually all a pretty dopy way of framing things but the polling suggests it works.
“These are of course both framed in the negative but I'd also split these to be framed in the positive at least 60% of the time. I think people's feelings abt trump are pretty well baked so actually i'd say these should be mostly framed in the positive with the contrast assumed.”
Read 5 tweets
Jan 29, 2018
Like usual, @realDonaldTrump is attacking smart black people who disagree with him. Today's installment? Saying that Jay Z and @VanJones68 should be grateful to him for low black unemployment rates.

@shawnsebastian has a full rebuttal here. I'll give you the abridged version.
First, Donald Trump gets zero credit for the strong economy. Take a look at these 2 charts. The recovery started 8 years ago (under a Black president).

And it was propelled forward until now because Janet Yellen insisted on pursuing true full employment.

Trump fired Yellen.
Yellen was most successful Fed chair in history. She pushed unemployment down & kept inflation low. But Trump replaced her with a less qualified man because he wanted to make his mark on the Fed.

So, his taking credit for this economy is really rich.

politico.com/magazine/story…
Read 10 tweets
Jan 13, 2018
Wow look! Full employment makes "unemployable" people very employable. And it has tremendous ability to combat racial inequality.

*This* is why we launched Fed Up. Full employment is the most powerful public policy that exists for improving lives.

mobile.nytimes.com/2018/01/13/bus…
By empowering workers to quit if they want, full employment:
Raises wages,
reduces inequality,
combats racial discrimination,
promotes gender equity,
reduces sexual assaults/harassment,
stabilizes schedules,
facilities unionization,
reduces depression&suicide
Enhances skills.
I know there's no such thing as a panacea, but I think that's a pretty unparalleled list of benefits that come as a result of one policy intervention!

#FullEmploymentIsAwesome
Read 16 tweets
Dec 31, 2017
Some end-of-year thoughts about this moment, this movement, power, race, money, and what we need to do together over the coming 10 months. Please read it and retweet it if it strikes a chord with you. And, white people, *please* open your wallets before midnight tomorrow.
This year has been exhausting. For all of us. The racism & xenophobia has been out of control. To me, as a white person, it has been offensive & shocking. But you know what? Those feelings are negligible compared to what it's felt like to be on the receiving end of the hatred.
One example is the disparity between how @lsarsour and I get treated on Twitter. I have received overwhelming positive support. Linda receives daily waves of hatred, racism, and sexism. And death threats. She needs a security detail to get around her beloved Brooklyn.
Read 15 tweets

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