Ady Barkan isn't dying anymore

[Brad Lander for NYC Comptroller] Dear {NAME}, Some evenings at 7 p.m, I find myself listening for the cheer of gratitude that we raised every night at the start of the pandemic for the health care and essential workers who were risking their lives for others on the front lines of the crisis. Our cheers were only symbolic – they did not, alas, come with extra pay, or even basic health and safety protections. And yet, there was something genuinely beautiful about it. We had, for those few minutes, a profoundly collective sense of gratitude, for those who were working to protect and take care of the rest of us. The silence at 7 p.m. these days is symbolic, too. We have not come together around a world in which those who care for others are more valued. Sometimes it even feels like we are more bitter than grateful. So this Thanksgiving, I think our challenge is to find a path back to that kind of shared gratitude, and to reflect on its obligations. This past weekend, I got to visit my friend Ady Barkan, an activist who was diagnosed with ALS back in 2016, at age 35, just three months after his son Carl was born. You can watch Ady’s story in the powerful documentary, [Not Going Quietly]( if you’re looking for a way to reflect on gratitude this weekend. ALS has a life expectancy of 3-5 years – so Ady did not know if he’d survive the Trump presidency. But with courage that still surpasses understanding, he threw his whole life into activism – launching the organization [Be A Hero]( to help save the Affordable Care Act (which he & others largely succeeded at, despite repeated GOP efforts), and then to expand health care and home care to everyone (which they have not, yet). It’s weird to say it this way, but Ady isn’t, exactly, dying any more. ALS has stolen away his use of his body, and his ability to speak, breathe, or eat. But with the help of a ventilator, a feeding tube, eye-gaze technology that allows him to type (agonizingly slowly) with his eyes, 24-hour care from some extraordinary health care workers, and the powerful love of his family, Ady is still organizing people to fight for health care, and for justice. Last year, [Ady asked us]( to join him in fighting for the inclusion of a home care expansion in what we hoped would be the “Build Back Better” bill – and to make sure that care workers have the decent pay, protections and dignity that they need and deserve. Sadly, the home care provisions – like the child care expansion, child tax credit, and the “care economy” parts of Build Back Better – were killed by Senators Joe Manchin and Kristen Sinema. While I am most assuredly thankful this year for the urgent investments in renewable energy and climate transition that made it into the Inflation Reduction Act**, our obligation to deliver on those investments in care and care workers remains. Years from now, when we look back on the pandemic, I think we’ll be judged in large part by whether we transitioned to a “care economy,” one where the care people need – for kids, for seniors, for our health – is available and affordable to everyone, and whether the workers who provide it remain in precarity, or instead can flourish. Did we expand home care and pay home care workers a living wage, as [NY Caring Majority]( is demanding? Did we deliver respect, recognition, and rights to [domestic workers?]( Did we expand child care so all families could get good care for their kids, and raise the wages of early childhood educators so they did not live in poverty (and, yes, did we pay the childcare organizations on time)? Did we just clap for a few minutes on those evenings, or did we reflect on our gratitude, and then deliver on its obligations? I hope you have a beautiful Thanksgiving, surrounded by family and friends (a blessing Ady still receives) and some really good food (which he really misses). And I hope we’ll all heed the courage of his example, and his call to build a world where care is really what we value. With more gratitude – for Ady, and for so many other blessings – than I could type, in any medium, Brad **Don’t dismiss the possibility of solar power to save lives! Ady & Rachael installed solar panels on their roof, and a battery to store it. So when power in their neighborhood went out earlier this fall, it was off-the-grid solar power that kept him breathing. Lander 2025 68 Jay Street Brooklyn, NY 11201 United States info@landerfornyc.com Paid for by Lander for NYC [unsubscribe]( Was this forwarded to you? [Sign up here](.