They're Getting Kool-Aid™ Jammers and Animated Movies*

Children do not belong in detention centers. "Detention centers" appears to be a more acceptable term than "concentration camps." Families belong together. This is now a popular trending hashtag. So is Close the Camps Now. Last night I attended a vigil downtown at the Los Angeles Metropolitan Detention Center, where over 1000 men are being held. We gathered outside the facility with 4000 people, just over the 10 freeway. Some people brought Mylar blankets as a sign of solidarity, fashioning brilliant flags and scarves out of them. The incarcerated children have been given such blankets to cover themselves during detainment.

We held our flashlights, electric candles and phone lights up toward the building, and the men inside flashed their own lights through the tiny slits in the imposing walls. It felt futile to be there and powerful at once, but mostly futile.

One of Sophie's caregivers, a legal resident originally from Guatemala thanked me for going, and I felt ashamed. There is much tension in our city as families gear up for tomorrow's ICE raids.

Meanwhile, Terrible America provides snacks and movies to the thousands of children separated from their families, languishing in private facilities whose boards are stocked with profit-hungry rich men, rich men who've protected one another in the vilest of ways. Perhaps the vilest of them all, the POSPOTUS, plays golf, presides over rallies and is cheered by the most ignorant people in the country. The most powerful people in the country who continue to support him have lost whatever shreds of moral authority they might have had and will, I imagine, go down in history as spineless, lacking even a modicum of integrity.

I'm curious. I had an exchange last year with someone who objected mightily to my outrage over separating children from their parents when they sought asylum at the border. Anonymous, what do you think of the camps now? How about the children separated from their parents? How about the conditions of the camps where thousands of men, women and children are being held?

Is this who we are?

* So reported F*^king Vie President Pence after a recent "visit" to a detention camp in Texas and proceeded to blame Congress for the over-crowded conditions in the men's facilities. The photo of him and his entourage smiling their greasy smiles of paternal solicitude made me sick.

PSA for These Difficult Times

Letting my snaggle tooth hang out

You're exactly where you're supposed to be this moment. I tend to project all my fear out into the future, but you know what? It's my present that's terrifying at times, and I have to tell myself that I'm exactly where I'm supposed to be this moment, over and over and over. Sometimes cliches are necessary.

Here's the PSA part of this post:

Do you listen to The Daily? It's a daily podcast that digs deep into a pertinent issue for twenty minutes, five days a week. The New York Times does it, so I suppose some of you out there reading will say it's fake news or liberal biased media or whatever lazy cliches are being thrown about. I say lazy because we're all subject to lazy, particularly intellectual laziness, and these times call for us to gird our loins and pay attention and read quality journalism and listen to careful, investigative work. I think The Daily does important reporting, and from what I've listened to for many months, it appears to cover sides of an issue when that's pertinent but also THE FACTS as they appear to our eyes and ears.

Truth is always truth, contrary to what you might have heard out of the Powers That Be's very own mouths.

Today's podcast was Part One of a two-part series called Divided: How Family Separations Started, 

and it'll blow your mind and break your heart.

Recently, I wrote a post detailing my happiness at Sophie finally starting her new adult day program. One of my Anonymous commenters wrote this:

What, you are happy with a great program for Sophie. That is wonderful. But what about all the children separated from their parents at the border?

I replied:

Anonymous, what do you mean? Have I forgotten that our government kidnapped thousands of children and put them in internment camps. Never. Doing what I can — do you need info or resources on how you can help them?

I suspect that this is the same Anonymous who spent a lot of time on an earlier post of mine defending the separation policy, so I'm hoping that she listens to the podcast. I wonder, too, whether her feelings about the great tragedy on our borders have evolved at all. The reason why I'm wondering is because I think it's going to take as many people as possible to exact justice. Yesterday, the POSPOTUS himself blessed and spoke warmly to those who work for ICE and for their actions at the border. 

So what can we do about the clusterfuck beyond educating ourselves? The obvious solutions are to pressure your representatives to work toward reuniting these children with their families, to vote for those people who fight injustice, to donate money or even donate and subscribe to the ACLU, to protest whenever there are gatherings, to hold your government responsible, to speak the truth and refrain from arguing that there's any reason at all to separate any child from his or her parent because they are seeking asylum or a better life for their families and happen to have brown skin.

Here are some more ideas that I found on the Internets.

1. Become a child advocate.
2. Become a Court-Appointed Special Advocate (CASA) for young people in foster care or donate to your local CASA program
3. Donate to Comfort Case which gives backpacks of comfort items to kids in foster care
4. Volunteer to visit people in immigration detention.
5. Help transform your faith community or business into a sanctuary space.
6. If you happen to be a lawyer, paralegal or law student, a number of organizations are looking for pro bono volunteers.

Click HERE for more information and links to explore the above.

The Daily

#familiesbelongtogether

#resist

Merry Christmas Eve Resistors!

I tossed and turned last night and dreamt of moths. No anxiety dream, though, as I went to bed reading about moths. They build scaffolding, web-like things, lurk in dark closets burrowing into grains and stained clothing. They've been flying around our house like they own it. I've done the clean out the cupboards and throw away the open boxes, spray down the shelves with vinegar. I dislike their papery wings, their longing for water and light.


I figure baking and writing go hand in hand.** I've baked ten gingerbread forest cakes and am working on my fourth coconut cake this morning. My cottage industry gig, Everyone Needs Cake,™ has helped to fund Christmas this year. If there's a grosser phrase than help to fund Christmas, write it down in the comments because what's grosser than Consumer Christmas? My tiny men-children and daughter will reap the benefits of my returning to my pastry roots, and so has my writing. I wasn't writing at all the last few months, not so much paralyzed as overwhelmed and disgusted by the meaninglessness of all of it. Not just my writing, but the whole full catastrophe of Terrible America, fueled by the POSPOTUS* and his band of billionaires and Eddie Munster and The Turtle and all the rest of the Kochacracy (that's you, Susan Collins, and Murkowski, too, with the selling off of the Alaskan Wildlife Refuge to oil).

Anyway.

The writing and the baking go hand in hand, here in the gingerbread forest with confectioner's sugar snow, papery moth wings, and coconut clouds on the pale blue dot of home in the vast galaxy around it.

Merry Christmas Eve, resistors!

#RESIST




















*Piece of Shit President of the United States. Yeah, I know it's Christmas Eve and all is hallowed, but the acronym still stands.

** No moth infestation in the products used for Everyone Needs Cake™ -- just in my dreams.

Stop Kumbayaing and WAKE UP!

Dear Representative or Senator,

As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.

I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.

As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.

ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.

I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.

Sincerely,

Elizabeth Aquino


#RESIST

Here's a link for you to send your own letter.

Here's where you can call with a script. Do it. I beg you.

The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."

How You Can Save Medicaid (#Itsbeggingtime)

So last night, I stood on the steps of Los Angeles' City Hall with hundreds of people for a rally to support Planned Parenthood and women's health.

This morning, as you know, the Senate Republicans unleashed their vile version of TrumpCare, or the Ass Hole Care Act.

You know how I feel about repealing the Affordable Care Act, and I'm not going to rant about the horrific effects its repeal would have on me, on Sophie, on her father and on her brothers. Suffice it to say that it will be catastrophic.

"The defining feature of the Senate Republican health care bill is that, over the long term, it would absolutely decimate Medicaid—more so even than the House legislation passed last month. And it accomplishes this wrecking job with surprising efficiency, a mere six lines of text in a 142-page document."

from, Here are the six lines of text that could decimate America's biggest healthcare program 

As my friend Jeneva Burroughs Stone wrote so eloquently, "The cost shift here (to us) would be antithetical to the notion of American self-sufficiency and individual independence because the end result would be to bankrupt citizens, such as Roger and myself when our only "crime" against the State is giving birth to a child with disabilities."

That statement holds true to the majority of people whom I know who have children with disabilities. It also holds true for those who are caring for aging relatives or for those with chronic disease. 

You can help, particularly if you live in a state with Republican senators. Please help us.

Here's a script for when you make your calls. 


All information, plus numbers and action items is taken from Indivisible's guide to Stop Trumpcare.

#Resist

You're doing it for her and millions like her:

Active Empathy and Some Prom Photos

Have I told ya'll about our Indivisible group called Active Empathy? Indivisible is the national group that is resisting Trump's agenda in a methodical way. Active Empathy is what our local group is called, and a small group of us, including the four gorgeous founders, meet weekly to plan the BIG meeting which happens to be this afternoon. It's our second one, and we hope to galvanize people to really participate in the resistance. If you're local, please come or stay involved by getting our weekly emails. We have a facebook page and a website that are works in progress.

Activeempathy.org

Yours truly is heading up the Healthcare/Disability Rights working group. I'm using today's meeting to encourage people to be educated about healthcare law as it now exists, to know what Medicaid is, what block grants are, what single-payer insurance is, etc. etc. Education is everything, isn't it? It's everything, and we live under a regime that is not only ignorant but actively promotes ignorance. We're also, as working group heads, going to give our groups at least one ACTION item to complete this week. I know from the years of advocacy work that I did in disability and special needs healthcare, that doing one thing, however small, is essential and that this one thing should be done within days of getting all charged up and excited. One small thing.

So that's what's happening around these parts today.










On another note, I don't think I showed you these photos of my gorgeous son and his date from the prom last weekend. They appeared on Instagram and Facebook, but most of you who read the old blog are sane avoiders of social media, so here's my pride and joy, the light of my life, the little boy turned to man:

The Measure of Our Desperation

We've got two choices: resist or cut and run.

Cutting and running is the choice of the privileged and the desperate, so maybe it's more about the measure of our desperation.

Here's a poem:

Girdle

In our teens we all bought girdles
with rubber knobs to hold up our stockings.
We wiggled into them, our “foundations.”

So many things look absurd from a distance
that people still take seriously,
like whether there's a Heaven for pets.

What ever happened to my girdle?
One day I peeled it off for the last time
and all hell broke loose.

Connie Wanek, from Rival Gardens

I cut and pasted the poem here from The Writer's Almanac this morning after reading someone's post on Facebook. 

I bought a copy of Wanek's book and hope she doesn't mind that I've put her poem on my blog. Maybe you'll buy a copy of her book, too. 

So many people are throwing around their desire to flee the Disunited States of Amerikkka, Inc., and I get it. I'm a person who rarely feels sick to her stomach in the literal sense of the word and have probably actually vomited only about five times in my entire life, but I've felt more nauseous and fearful over the last few months than I have in the 53 years previous that I've lived on the planet. I wouldn't mind living in a small space along the coast of Costa Rica despite the bugs. I'd move to New Zealand, but traveling that far in a plane with Sophie might be worse than taking the fallout of a nuclear bomb from North Korea. 

You'll have to forgive my dark, tasteless humor if you're new here. 

Anyhoo.*

The thing is, I can't shake my privilege. What about all those who won't be able to cut and run? Are we as desperate as those people who travel thousands of miles through deserts and over barbed wire with only the clothes they're wearing? I'm not. This is as much our country as the fuckers who are ruling it right now. I'm going to have to remain fierce and resist the bullshit, even if the resistance amounts to nothing. If I take the measure of my desperation, I immediately plunge back into the many moments of watching Sophie seize and suffer, of watching my sense of control slip away, vomited up in some intense instant and then flushed down with water, my own face clammy against the cool of the bathroom floor. And still. Do you understand what I'm saying? I'm going to have to remain fierce and resist the bullshit. In this moment, this now, that ends the moments before and begins the moments after and on. 

It all sounds dramatic, maybe too dramatic. Peeling it off and letting all hell break loose sounds better.

#resist

*For those who are new, I hate this word and use it sparingly and in jest.

Super Human Resistance

The only person in these parts who is super human is Sophie. She's basically arisen from a fast-declining, near-comatose state that lasted for a good six weeks or so. I think that I, along with The Powers That Be In Neurologyland, had a hand in her demise when we raised her benzodiazepine Onfi by about four times. I think she was profoundly over-medicated. As I've mentioned before, CBD can raise the levels of Onfi, so once I'd decided that she was over-medicated (with the help of her father and Dr. Bonni Goldstein, cannabis doctor extraordinaire) and lowered said medication, she began to emerge. I also brought her back to Dr. Joy Jin (Chinese doctor extraordinaire) who is giving her Chinese herbs and The Osteopath who is treating her overall well-being with regular visits. A week or so ago I also had an amazing experience with Sophie in my home which so blew my mind that I am hard put to talk, much less write about it. It was a "sound bath," and I know by even typing that out, I am going to sound like a crazy lady from LaLa land. Trust me. I don't do drugs, but I imagine what we experienced was similar in intensity and beauty without the side effects.

So, yes, arisen. Sophie has arisen like some kind of secular Lazarus.

Yesterday, we went to the dentist, a trip that I loathe, probably, more than any other aspect of caregiving. Sophie actually stayed still with only minimal restraint, opened and closed her mouth on command with a bit of cueing, and the new dentist talked to her the entire time she worked. She works with adults with disabilities and has trained to do so at UCLA, is probably about fourteen years old but is an angel, a true angel. She even made a little tool out of six or seven tongue depressors wrapped in gauze that she used to prop Sophie's mouth open. The usual tool is this metal clamp thing that resembles some kind of nineteenth century gynecological device and is so uncomfortable that Sophie generally thrashes and screams when it's placed in her mouth. The tongue depressor contraption worked perfectly because Sophie likes to bite on things, and she could do so even as the dentist worked on cleaning her teeth.

Again, arisen. Sophie has arisen like some kind of secular Lazarus. With help.


She's AWAKE.


The other thing I wanted to say here is that I wake up every morning in a state of dread. I know ya'll do, too, and I know most of you want to not only resist the clusterfuck that is our current government but stay alive while doing so. This morning as I did my usual morning things, I thought about being in it for the long haul. I realized that I've been in it for the long haul as a caregiver. I've watched my child seize tens of thousands of times, an experience that some people have only once if at all. It never gets easier, but I'm still here. Sophie, despite having tens of thousands of seizures, is still here. I'm taking cues from Sophie. She's a resister. I can be a resister. You can be one, too.

In addition to caregiving and seizures, though, or despite it and them, is a life filled with family and friendships and reading literature and poetry. There's making love and writing and laughing and drinking and eating good food. There's going to the movies and bird-watching. There's taking care of my garden and beautiful house. There's meditating and thinking and allowing my rich imagination to flourish. In between having seizures and convalescing for Sophie there's music and walking outside, there's looking up at trees and out to the horizon at the edge of the ocean. There's eating and watching and drinking and swinging and taking baths. There's being held tight by brothers and a mother and a father. There are things to chew on and mermaids. There's a purple room.

What's my point? We can't keep up this resistance without help and without acknowledging the other parts of our lives. I read an article today that I thought I'd share here. It's called How To #StayOutraged Without Losing Your Mind by Mirah Curzer. Thank you, Mirah! One suggestion , among several, is that we pick one or two things to concentrate on. I'm picking healthcare and disability-related issues,particularly for the disadvantaged and minorities.

What are y'all going to do?






#RESIST