1.20.2017

Yes, He Did. Now What Can We Do?

Of all the things that kept me crying during today's transition from functioning government to proto-dystopia—gut-wrenching fear for my children's future, executive branch corruption and incompetence, Betsy DeVos's staggering ignorance about special education and grizzly bears, ACA repeal—this is what made me cry the hardest:


[image: Tweet from @ObamaWhiteHouse: an image of the Obama family holding hands with Representative John Lewis and other civil rights activists, as the front line of a marching/rolling crowd. Followed by the text "Yes we can. Yes we did. Thank you for being a part of the past eight years.]

My heart cannot grapple with the Obamas being gone. My brain cannot process the extent of the toady- and corruption-scented void the Electoral College dragged into their place.

Confronting this new reality is horrible in an even-kittens-can't-fix-it kind of way (though my current status of living in a one cat household when I'm used to taking my solace under a pile of kitties? That is not helping).

If you find yourself lapsing into despondence like me, please remember what I keep telling myself: there ARE things we can do. Here are a few:
  • Protest, of course -- whether in person, or virtually. While fully embracing our rights to do so
  • Support organizations that will keep our Con-Artist-in-Chief as accountable as anyone that slippery can be, like the Electronic Frontier Foundation (They have a 100-Day Plan, too. Check it out).
  • Added 1/21: Stay on top of the damage being done, like the LGBT Rights section being removed from the Department of Labor site, all references to climate change having disappeared from the official White House website, etc. (I recommend following Kerima Çevik's list on this matter.)
  • Continue to call (if you can) your Senators and Representatives. Calling is gold. Gold, I tell you. Keep your public servants accountable. 
  • Rally for top-notch Democratic leadership, so we can dig ourselves out of this manure pile strategically, and effectively.
I have Opinions on that last one. Specifically, I am putting my marker on Tom Perez for leader of the DNC. As I wrote earlier this week at The Establishment:
"We need a leader like Perez, a former civil rights lawyer, if we are to protect the rights and well-being of people with disabilities and push back productively against Trump’s discriminatory beliefs, staff, and supporters. We need a Chairman with Perez’s history as a supporter and enforcer of disability rights. We need his proven ability to engage with his opposition constructively, rather than through ridicule or open combat. And we need to understand that Trump’s brazen cronyism and political strip-mining can be most effectively countered by someone with Perez’s personal understanding of the damage an authoritarian leader can unleash on a country. (Perez’s maternal grandfather, formerly the Dominican Republic’s ambassador to the U.S., was declared persona non grata by dictator Rafael Trujillo.)"
I am also trying to learn from Seymour, who is tied into news sources and philosophies that fill him with reassurance during trying times. He has been patting my shoulder, a lot. Bless him (sincerely).

This reality—of living under hateful, bigoted, ignorant leadership—is an awful one. But we will overcome. If there's anything to be learned from the decades of blood, sweat, and tears civil rights progress that preceded this backslide, it's that we cannot ever stop fighting for our rights.

1.13.2017

Looming ACA Repeal: Why It Matters to Us, and How You Can Help

Leo: sleeping during a sleep study
[image: close up of a sleeping white
teen boy's hand resting on his chest,
with a glowing red oxygen sensor
on his index finger tip.]
Leo got up at 2 AM this morning, and never went back to sleep. Why? We don't know. Though he wakes up early a lot, he is also generally cheerful (and ready to party). Except for sleep deprivation on his parents' part, this is just the way things are in our house: Leo doesn't wake early on purpose, and he needs our support whenever he's on the move. (We are lucky: I work from home and can pick up nap slack if need be, and on weekends his dad and I tag-team.)

But we still want to know what is disrupting Leo's sleep -- even though we already know sleep disturbances are common for autistic people -- and if it is related to the daytime unhappiness he's been experiencing for almost a year. So we took him in for a sleep study last month, the last in a series of appointments with at least seven specialty doctors and four different scanning/monitoring procedures.

It's been a month since he did that sleep study at a local research hospital, and, according to his referring doctor (who referred him in August, mind you) the results won't be in for another week or so. I'm frustrated, because it's been months and we still don't have answers, but this is also just the way it is. Apparently the sleep study results reading backlog is huge.

Just the way it is -- and we have good insurance. And live in a major metro area with world-class medical options and facilities. And are part of a fantastic, responsive medical group. We are 1) lucky, 2) lucky, and 3) lucky. For now.

But what if the GOP's ongoing attempt to repeal the Affordable Care Act succeeds? Will that affect us? Even if it doesn't, we know -- for a fact -- that a repeal would affect many, many people with disabilities, and/or their families, not to mention far too many other Americans. According to Families USA, the Congressional attempt at ACA repeal is:
"...the biggest threat to the health care law that we’ve ever experienced. And the stakes could not be higher. All the gains we’ve made in expanding health coverage to a greater share of people and strengthening the health care system in America are at risk."
What exactly is at stake for Leo and other members of the disability community? According to NPR,
"[Before the ACA] insurers would cover rehabilitation to help people regain functions they had lost, such as walking again after a stroke, but not care needed to either gain functions patients never had, such as speech therapy for a child who never learned how to talk, or to maintain a patient's current level of function. The Affordable Care Act requires plans to offer coverage for such treatments, dubbed habilitative care, as part of the essential health benefits in plans sold to individuals and small groups."
So, losing the ACA will, for many, be catastrophic. But what can you do? If you need specific guidance or reassurance about how you can make a real difference, Kit Mead put together #SaveTheACA - Affordable Care Act Resources and Actions, which is a great resource list, with sections for:
  • Direct action, calling, and sharing stories
  • Tips for calling and contacting
  • Background information 
And Naomi Kritzer wrote straightforward guidelines on strategic approaches to contacting your Congressional representatives, whether they are supporting policies you agree with or not, and without throwing other groups under the bus.

And if you don't have ties to the autism and disability community -- and aren't incredibly wealthy -- you should still be worried because The ACA repeal may affect you too:
Republicans’ planned bill to repeal the Affordable Care Act (ACA), which is expected to be similar to the repeal bill that President Obama vetoed in January 2016, would provide an immediate windfall tax cut to the highest-income Americans while raising taxes significantly on about 7 million low- and moderate-income families.
This is such a distressing time. (Protip: if the current state of politics is as dismaying for you as it is for me and you haven't watched the series Black Mirror yet? Now is a really bad time to start.) It is easy to feel like nothing matters and you can't make a difference -- but you can, and the best way to do it is to take action by contacting your senators and representatives. Even if you think it doesn't matter, it really, really does.

Please use the guides above to help you take whatever steps you can to #ProtectOurCare. And thank you. Especially if you'd rather be like Leo, especially if you'd rather Just Keep Swimming.

Leo blissfully hanging in a relative's pool on NYE. 
[image: white teen boy from behind, in a lighted-up pool,
at night, with city lights in the background.
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