Thursday, June 28, 2018


Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.

The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance
Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.

Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 

When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 

Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.

It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.

*  You can easily look up the lessons, but I typed them out on the blog HERE
**Here's a list of things you can do if or when Roe v Wade is overturned.


  1. Obeying is something I was taught well to do as a child, and it is something that I feel is altogether unnecessary these days. Fuck obeying. I'm fighting. I'm tired, but I'm fighting. Love you.

  2. I left a message at the post you linked to with the word "HERE," forgetting I had left this blogpost. Thank you for all the information you shared today, including the good news that Sophie has a new wheelchair. Who is the artist who painted the new and entirely beautiful image at the top of your blog? Sending love to you and Sophie.

  3. Yes. We certainly do not have to obey in advance and in all reality, we don't have to obey at all if we can get away with it. As Bob Dylan said once, "To live outside the law you must be honest."
    I'm so glad that Sophie got a new wheel chair because I know how much that will impact your life and your daughter's. For the better!
    And your new header picture is divine.

  4. I am in agreement that obeying in advance is risky. I am someone who doesn't conform easily, if at all, so that helps me to rebel easily I suppose and be controversial, outspoken and confrontational when it is necessary or the right thing to do while advocating for those with no Voice. Here's to being Loud.

  5. I feel despair so reading a post like this means a lot. It helps me know I can hold on. Thank you.

  6. I’d like to be in that car. I want to tell Sophie my secrets. So glad she got a new, more comfortable wheelchair. This helped me in my despair.

  7. Not obeying, not believing us getting fucked is inevitable. I too am very loud. Carry on!!!

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  9. Please add my mouth to your group of louds.


  10. my comment keeps disappearing in the middle of typing it! perhaps it is trying to tell me to keep it short. i remember them from when you first posted them but reading them again, it's stunning how prescient they are turning out to be.



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