This article was published by TalkPoverty.org.
My daughter was born 26 weeks into my pregnancy. When Charlie arrived she weighed one pound and 12 ounces, and she was just as long as my finger. During the first few weeks of her life, I watched her overcome what felt like insurmountable obstacles. She struggled to breathe, her stomach wasn’t mature enough to digest food, and her skin was so thin it was agony for her to be held. I worried that we were asking too much of her, but she fought to survive. Today, she is a joyous 5-year-old, though she has residual effects of her significantly premature birth. Charlie was incredibly susceptible to infections, and she has delays in speech and fine motor development. She will go through life with a disability: she needs help tying her shoes, using scissors, and opening her lunch.
Throughout 2017, my family and I have fought constantly for Charlie’s health care. I have marched, spoken at press conferences, and met with more representatives than I can count to try to explain what Congressional Republican attempts to repeal Obamacare and slash Medicaid funding would do to my family. I’ve spent days, hours, and weeks travelling back and forth between my home in Charlottesville, Virginia, and Washington, DC, because I knew fighting for Charlie’s life meant fighting for affordable, accessible, and comprehensive health care.
When Charlie was an infant, I would often sit and watch her. Sometimes, she would forget to breathe and I would gently remind her with a nudge. When we defeated Graham-Cassidy, the last attempt to overturn the Affordable Care Act, it finally felt like we could both breathe more easily.
But now there is a new threat on the horizon: HR 620, the ADA Education and Reform Act, has already passed the House and is at risk of being taken up in the Senate. If it’s passed, the bill will change key provisions of the Americans with Disabilities Act (ADA), shifting the burden of accessibility from businesses to people with disabilities.
Sometimes, Charlie would forget to breathe and I would gently remind her with a nudge
For 28 years now, the ADA has given people like Charlie the unassailable right to be part of public life: They cannot be discriminated against at work or in school, and businesses have to be accessible by including things like curb cuts and accessible bathroom stalls. Over the years, people with disabilities have needed to pursue litigation under the ADA when businesses refuse to become accessible. And it’s worked. Our society is much more accessible today than it was nearly three decades ago when disabled activists had to climb up the steps of the Capitol to get attention. But HR 620 threatens to send us back to that time — a time when people with disabilities were excluded from public life.
Under HR 620, people with disabilities will have to notify businesses that they are violating the ADA, citing very specific details regarding the provisions of the statute that apply to their particular situation. Business owners would then have up to six months to make “substantial progress” toward fixing the issue, but they don’t have to be fully accessible. That is at least six months before the person filing the complaint can access a restaurant, or a movie theater, or a book store that’s effectively barred its doors to people with disabilities — even though accessibility has been the law for almost 30 years.
No other marginalized community needs to demonstrate why they deserve to access a public space, let alone cite specific legal provisions, in order to be able to access that space. Why should Charlie have to?
The ADA made the American Dream possible for a generation of people with disabilities. Now my child is being told the American Dream is no longer available to her. This isn’t the United States of America I know, and it isn’t the society I want to live in.
Truthout Is Preparing to Meet Trump’s Agenda With Resistance at Every Turn
Dear Truthout Community,
If you feel rage, despondency, confusion and deep fear today, you are not alone. We’re feeling it too. We are heartsick. Facing down Trump’s fascist agenda, we are desperately worried about the most vulnerable people among us, including our loved ones and everyone in the Truthout community, and our minds are racing a million miles a minute to try to map out all that needs to be done.
We must give ourselves space to grieve and feel our fear, feel our rage, and keep in the forefront of our mind the stark truth that millions of real human lives are on the line. And simultaneously, we’ve got to get to work, take stock of our resources, and prepare to throw ourselves full force into the movement.
Journalism is a linchpin of that movement. Even as we are reeling, we’re summoning up all the energy we can to face down what’s coming, because we know that one of the sharpest weapons against fascism is publishing the truth.
There are many terrifying planks to the Trump agenda, and we plan to devote ourselves to reporting thoroughly on each one and, crucially, covering the movements resisting them. We also recognize that Trump is a dire threat to journalism itself, and that we must take this seriously from the outset.
Last week, the four of us sat down to have some hard but necessary conversations about Truthout under a Trump presidency. How would we defend our publication from an avalanche of far right lawsuits that seek to bankrupt us? How would we keep our reporters safe if they need to cover outbreaks of political violence, or if they are targeted by authorities? How will we urgently produce the practical analysis, tools and movement coverage that you need right now — breaking through our normal routines to meet a terrifying moment in ways that best serve you?
It will be a tough, scary four years to produce social justice-driven journalism. We need to deliver news, strategy, liberatory ideas, tools and movement-sparking solutions with a force that we never have had to before. And at the same time, we desperately need to protect our ability to do so.
We know this is such a painful moment and donations may understandably be the last thing on your mind. But we must ask for your support, which is needed in a new and urgent way.
We promise we will kick into an even higher gear to give you truthful news that cuts against the disinformation and vitriol and hate and violence. We promise to publish analyses that will serve the needs of the movements we all rely on to survive the next four years, and even build for the future. We promise to be responsive, to recognize you as members of our community with a vital stake and voice in this work.
Please dig deep if you can, but a donation of any amount will be a truly meaningful and tangible action in this cataclysmic historical moment. We are presently looking for 464 new monthly donors in the next 8 days.
We’re with you. Let’s do all we can to move forward together.
With love, rage, and solidarity,
Maya, Negin, Saima, and Ziggy