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.

Fifteen

That's my sophomore year school picture. I was fifteen years old and attended The Lovett School in Atlanta, Georgia. We wore powder blue shirt-dresses in the warmer months that we were allowed to cinch with whatever belt we liked. We wore white or navy knee-socks and some kind of loafer from L.L. Bean or Wallabees from the department store. We were not allowed to wear sneakers or tennis shoes as we called them in the south. My necklace is a gold Catholic medal of the Virgin Mary. I was one of the few Catholics in my class. It was an Episcopal prep school. There were fewer Jews and no Muslims that I know of, but would a Muslim have announced it back in the late 1970s at a conservative prep school in the south? I was thought to be Jewish, probably because I was dark and looked faintly exotic. That's the word people used. My family had moved to the south from the New York area several years before, and while I had a southern grandmother, I never felt southern, never really felt a part of it. Why are you here? one of the blonde popular girls asked me once in front of the P.E. lockers. It was a Jewish holiday. I don't remember what I said even though I remember the question. There were even fewer people of color than Jews. We called people of color different names: black, Indian, Mexican. I remember every African American person's name in my class. I don't remember everyone in my class or their names, but some things stick out. I don't remember whether anyone was Asian. We didn't use the word Asian. 

This isn't a post about nostalgia and only a little about memory. It isn't about me. My mood over the last week, since we heard Dr. Christine Blasey Ford's account of her assault at fifteen by probably soon-to-be Supreme Court Justice Brett Kavanaugh, has been one of outright rage and then simmering rage and then depression and then disbelief and then some more rage and now -- well -- resignation tempered by rage. Dr. Ford's memory has been called into question, at best. At worst, she is thought to be a shameful liar. This is why I'm angry. I'm angry at privilege and male trumping truth and justice. I'm angry about the narrow interests of the Republican party. I'm repulsed, frankly, by those who support the vile human they've elected to be president.

There's absolutely nothing wrong with being angry. We're learning that, now.

Remember that black women have been doing this shit and dealing with shit for even longer. So have all people of color, actually, and all those with disabilities, too. Remember that. We're strong. You're strong. I'm strong. Get out the vote. Remember disenfranchised people, including prisoners who've been released (in Florida, particularly, according to a friend). If you need a rest, take it. Then get up and get a grip.

#Ibelieveher
#resist
#smashthepatriarchy

We Will All Take Care of Us

A new podcast is up at Who Lives Like This?! and I think you'll find it intense and interesting. Jason and I talk with Josh Fyman whose daughter was diagnosed with Aicardi Syndrome when she was an infant. Aicardi is a seizure syndrome with a wide range of severity, and Josh's daughter is among the most severe. In and out of hospitals for much of her short life, often with life-threatening illness, she only began to maintain stability and health when the Fyman's decided to place her in a residential home.  Anyone who is a caregiver to a child with severe disabilities has thought about how to best care for their child, and the prevailing culture informs us that living at home is what is best for that child. What if it's not, though? What if the situation is dire enough that one is forced to make a wrenching decision to live apart from one's child? Josh speaks honestly and eloquently about his own family's decision. My preconceived beliefs about this subject were blown wide open, as was my heart.

Read more and get the link to the podcast here

It's a difficult subject -- maybe even the most difficult subject outside of death that we caregivers wrestle with nearly every day. It never goes away, actually, yet morphs into truly existential questions. Who will take care of her when I can't do it any longer? Who will take care of her when I die? How will I do this and for how long can I do this? Will I be able to afford to take care of her for the rest of her life and mine and what are the costs?

Here's the bottom line. We live in a country -- a world -- that pays short shrift to the lives of persons with disabilities. Where we live, even down to the actual state in this wealthy, enlightened country, determines the level of quality of our healthcare. We have laws to prevent discrimination against the disabled and to ensure their freedoms and dignity, but we are forced to be vigilant in defending those laws in an increasingly transactional world.

Anyone can acquire a disability or become disabled at any point in a life. Recognizing this is an important step in removing the fear of the Other. You know what I'm talking about.

What can you do to help? You can participate in our political system by writing and calling your representatives and holding them accountable to their disabled constituents, especially when leaders in the disability community give you the heads up. You can pay attention. You can reach out to disabled persons in your own communities, get to know them and include them.

You can listen to these podcasts and stories, help support caregivers' efforts to make the lives of their children and families better. You can watch this astounding video that smacks of hard truths.

When Home is the Mouth of a Shark

Artist: Eleazar Velazquez

Mary Moon at Bless Our Hearts has written a magnificent post about the current POSPOTUS' administration's draconian policy of separating children from their parents at our borders. She included this poem by Warsan Shire, a British poet born to Somali parents in Kenya, East Africa. Such is the power of poetry that I've included it in my own and hope that everyone will read it and pass it along. I know that many of you reading my blog deplore my politics, my language, my view of this country. I hope you read it, too, and think deeply about it and about your own complicity in supporting the man you've voted into office and what he's done to this country.

Home

no one leaves home unless
home is the mouth of a shark.

you only run for the border
when you see the whole city
running as well.

your neighbours running faster
than you, the boy you went to school with
who kissed you dizzy behind
the old tin factory is
holding a gun bigger than his body,
you only leave home
when home won't let you stay.

no one would leave home unless home
chased you, fire under feet,
hot blood in your belly.

it's not something you ever thought about
doing, and so when you did -
you carried the anthem under your breath,
waiting until the airport toilet
to tear up the passport and swallow,
each mouthful of paper making it clear that
you would not be going back.

you have to understand,
no one puts their children in a boat
unless the water is safer than the land.

who would choose to spend days
and nights in the stomach of a truck
unless the miles travelled
meant something more than journey.

no one would choose to crawl under fences,
be beaten until your shadow leaves you,
raped, then drowned, forced to the bottom of
the boat because you are darker, be sold,
starved, shot at the border like a sick animal,
be pitied, lose your name, lose your family,
make a refugee camp a home for a year or two or ten,
stripped and searched, find prison everywhere
and if you survive and you are greeted on the other side
with go home blacks, refugees
dirty immigrants, asylum seekers
sucking our country dry of milk,
dark, with their hands out
smell strange, savage -
look what they've done to their own countries,
what will they do to ours?

the dirty looks in the street
softer than a limb torn off,
the indignity of everyday life
more tender than fourteen men who
look like your father, between
your legs, insults easier to swallow
than rubble, than your child's body
in pieces - for now, forget about pride
your survival is more important.

i want to go home, but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home tells you to
leave what you could not behind,
even if it was human.

no one leaves home until home
is a damp voice in your ear saying
leave, run now, i don't know what
i've become.

Warsan Shire

I agree with Mary when she writes, 

I wish that every ignorant, racist asshole who claims that "illegal immigrants" who try to enter our country to suck the tit of the Big American Eagle Good Life Without Earning It deserve whatever happens to them up to and including having their babies snatched from them (that'll teach 'em!) could be forced to read this poem over and over until they get a molecule of understanding and empathy. If that's even possible which I doubt. 

We the people need to stop this right now. If we don't, I imagine that we, too, the privileged of this country, will be leaving our own home -- that damp voice in our ear saying leave, run now, we don't know what Amerikkka has become.

CALL YOUR SENATORS AND REPRESENTATIVES AND DEMAND THAT THIS POLICY BE STOPPED. VOTE LIKE YOUR LIFE AND THE LIFE OF YOUR CHILDREN DEPENDS UPON IT.

Don’t Give Up

I have a feeling that things are going to change. Between the kids themselves stepping up and speaking clearly and demanding accountability, and the growing power of resistance groups organizing with renewed energy, we’re going to change things. Women’s voices, raised in anger and in force (not violence) will propel this change. We will make the opposition irrelevant.  I have a feeling. So don’t give up.

You don't need a weatherman to see which way the wind blows

10.  Practice corporeal politics. Power wants your body softening in your chair and your emotions dissipating on the screen. Get outside. Put your body in unfamiliar places with unfamiliar people. Make new friends and march with them.

Timothy Snyder, Professor of History at Yale University, from On Tyranny: Twenty Lessons from the Twentieth Century 

Disabled activists put their bodies into the fight and were literally dragged from the arena and told to shut up by those who work for them. Others who work for them did nothing, and I imagine that is because they were disruptive, shrill, out of control. 

The activists were called a sideshow.

What have you done to help disabled persons and the families of medically complex children fight for proper healthcare for everyone?

We are doing this for you, too.

Yes, it's a drag to have to beg, to applaud even those who waffle around about doing the right thing, but we're the sort of people that know fatigue and disappointment in ways that you might not imagine. We're stronger for it.

Help.

Make calls.

Put your body -- your healthy body -- into it.

Be shrill.

Be disruptive.

See the way the wind blows.

Pretty Girl

I have no idea.

I have no ideas.

Pretty girl.

Pretty smart girl.

I'm thinking about a lifetime of relax, calm down, I'll pay you $1,000 to be quiet, You're such an exaggerator, Your head's always been in the clouds, Get your head out of your poetry/ass, Book sense isn't everything, relax, calm down, you're crazy, you're basically a pretty girl with some smarts.

Elizabeth Warren in the hallway outside the hallowed chamber, still reading.

The Republikkkans have prioritized voter suppression, and they've specifically targeted black people and other disadvantaged groups. The Supreme Court, with a majority of conservative justices, gutted the Voting Rights Act and literally opened the gates to restrictions and obstacles that some could argue were the main contributors to how we got here. Here.

How we got here. 

The most intelligent members of even my high school class are arguing with, literally, the least intelligent. The least intelligent are gloating, smug, rich, KKKristians. Gun-lovers. Brain, they hissed back in the eighth grade when I walked down the hallway with my stack of honors. Brain as derision.

Make Amerikkka great again. 

The appointment of the racist Sessions and the billionaire Kkkristian DeVos took the breath out of me. Not only because he's an old-school racist but because of his stance on medical marijuana. He's not into it. Not only because she's intent on increasing God's Kingdom but also because she is purposefully ignorant and disdainful of the laws protecting the rights of the learning and otherwise disabled.  She's not into it. Will I have to stockpile Sophie's medicine? At least Sophie ages out of the public school system this May. It gives me little comfort to be living in the greatest state in Amerikkka, because I know just how long many of my comrades in the disability/seizure/epilepsy world have been waiting and hoping for an easement of marijuana laws. They're not getting it now. Their children will suffer, perhaps die. It gives me little comfort to be living in the greatest state in Amerikkka because I know just how dependent many of my comrades in the disability/learning disabled world are, how young their children are, how they are thriving in schools responsible to the law that will, perhaps, not be enforced.

Even as I type, I'm getting my breath back.

I'm going to the pool now, will dive in and begin the steady strokes. I'll hold my breath, blow out through my nose and twist my head to the side. I won't gulp in air but rather train myself to keep breathing, steady, propulsive. Forward. Breathing for myself and breathing for others.



















#resist

An Anti-Apocalypse Mixtape

Play these songs while you're OUT THERE shaking things up and resisting.

The Rescheduling Cannabis Desert

Sophie and I in the desert, 1998, when I didn't realize that it would be another 16 years and as many drugs before we'd find relief from Sophie's seizures

There's been a bit of hullabaloo in the medical marijuana world this past week, so I thought I'd chime in and give ya'll an update. The United States Drug Enforcement Administration announced that it will expand the number of growers of research-grade marijuana, but will not reschedule the drug. In case you've been living under a rock (and that's ok because, frankly, I wish that I lived under a rock in some other galaxy, far far away), marijuana was classified as a Schedule I substance in the last millennium, along with heroin and cocaine. That means the plant is deemed unsafe, highly addictive and of no medicinal value. That also means the process by which universities and other researchers can grow the plant and study it is still severely limited, and I won't go into how frustrating it will continue to be for people who live in states where it's still restricted to have access to the medicine.

Basically, if you're a Sophie living in a state that doesn't have laws making medical marijuana legal for epilepsy, you're screwed and will continue to be so until the plant is rescheduled. I don't feel like telling you all about the U.S. patent on the plant which is in, of all places, conservative Mississippi, but you can read about it on the CNN site or watch Sanjay Gupta's video. 

At risk of turning this post into a rant, I think I'll just do a question and answer kind of thing and then go pour myself a shot of frozen vodka and scream up into the heavens.

1.     What does this mean for Sophie and your family?

Well, not much in terms of access to the oil. We live in California and have relatively easy, albeit expensive access to the oil that has helped her seizures so dramatically for the past 2 1/2 years. We can't travel out of state with the oil, though, or send it anywhere. Thank god we live in California with access to much beauty, but it makes me sad that Sophie never gets to really go anywhere outside the state.

2.       Aren't there some CBD-only laws that are being passed in various state legislatures and even the U.S. Congress? What do you think of those?

Yes, there is much lobbying and ongoing controversy concerning CBD-only laws in various states. I have decided opinions on this and will try to make it short and snappy. Some people deplore CBD-only laws, believing them to be ultimately detrimental to the ongoing efforts to make whole plant medicine legal in every state. Others believe that getting CBD products to those who need it is of paramount importance and that the legislation is just a baby step toward the larger goal of making medical marijuana (including THC) legal for everyone. While I understand the concerns of the former, I'm also acutely aware of the difficulties inherent in lobbying ignorant, biased and very conservative politicians. While we do so, people are literally dying or seizing their lives away with no opportunity to even try cannabis. What I've chosen to do is support CBD-only legislation at the federal level AND continue to yell, shout and write about the need for full, comprehensive whole plant cannabis legalization.

3.       Why do you think cannabis should be legalized in general, including THC products?

Well, I think that can best be explained by Sophie's story. In December of 2014 Sophie was one of the first twenty families in southern California to get off the Charlotte's Web CBD waiting list and took her first dose of cannabis. That product was very high CBD and very low THC. At the time she was also on maximum doses of both Onfi, a powerful benzodiazepine, and Vimpat, a powerful anti-epileptic. She had been on both drugs for nearly eight years, and despite them being DRUG #21 and DRUG #22 that she'd tried, she continued to have as many as five tonic clonic (grand mal) seizures and hundreds of myoclonic clusters A DAY. She had never had a day without seizures in her life. She was nineteen years old.

Within a week of trying the high CBD product, Sophie had her first seizure-free days and within two months, she was going several weeks without a single one. We did not adjust her medication for nearly four months and then began to slowly wean her from the Onfi. What happened over the next several months was a lot of tinkering and adjusting to try to get the best response and the most seizure-free days, even as we began the arduous process of weaning her from one of the most damaging and addictive drugs she's been on. About six months in, we decided that we needed to add in a small amount of THC because we'd heard that some kids with refractory seizures needed it to get better control. That seemed to do the trick, so her regimen was the high CBD product three times a day with a small amount of THC added in at night. 

4.        Where are you now with Sophie's regimen and seizure control?

Sophie has about 90% fewer seizures than she had before she began taking cannabis in late 2014. She will go a few weeks with minimal seizure activity and then have a couple of "bad" days that are dramatically less "bad" than her best days pre-cannabis. She is on approximately 75% less medication, too. She continues to take a high CBD strain called ACDC three times a day at a very low dose (we figured out that she does better at a lower dose) and a bit of straight THC oil at night or as a rescue med on her "bad" days. 

5.         Why do you think the government is so stubborn about rescheduling marijuana? 

You know what? It's so ludicrous, and I'm so sick of it that I'm going to call a spade a spade. I think Big Pharma has everything to do with this clusterf@*k, and that they want the whole pie. I think our legislators -- both right and left -- have been bought off in what we call "politics." I think it's about money when it isn't about plain old ignorance and even stupidity. I don't want to turn this post into a rant, so I'll leave it at that.

6.          Do you think that even recreational marijuana should be legalized?

Absolutely. 

7.          What do you think of Big Pharma studies and the general tone of physicians regarding the need for more research and caution?

I've always had a problem with authority and don't give a damn about what the medical community thinks. I'm not going to apologize for that. I long ago lost faith in Big Pharma and am perfectly aware that I'm unreasonable and biased.

8.           What and who guides you then when you have to make changes in Sophie's regimen?

I trust in my own role as a mother/healer and in the wisdom and experience of many other parents of children like Sophie. I believe in the power of the whole plant, pure and simple. I have worked very hard to channel my frustration in how Sophie and tens of thousands of other children have been treated for decades into confident advocacy for cannabis, but it gets damn difficult sometimes, and I'm not entirely confident that we're going to "win."



Now I'm off to the freezer for that shot of vodka. If you poke your head into your freezer, you might hear my screams.

Lions and Dentists and Cops, Oh My

And then they were upon her. That's a line from Shirley Jackson's chilling story The Lottery, and even though I was probably about fourteen years old when I read it, I can still remember the hairs on my arms and the back of my neck rising up as my bewildered brain took it in and figured it out. If you've never read the story, go and do it and then come back.

God, I love a good short story. That one and Faulkner's A Rose for Emily are seared into my consciousness, and the line I quoted above is one that I kept thinking about over the last few days as the news of the big game hunter dentist's quarry trickled and then gushed out on social media. I find big game hunters just laughably gross, and this guy looked to be typical for the -- well -- breed, but honestly, I'm way more scared of the response I've seen on social media and in the press. There have been people with tiny stuffed lions and people dressed like lions lurking and protesting in the streets, people storming the guy's dental office and shaming him over and over. The internet mobsters have hounded him and his entire family, outed them and forced his business to shut down. I imagine they've gotten death threats, and you could probably figure that their lives are irrevocably changed, if not ruined. Whole businesses are already sprouting up selling lion tee-shirts, and it seems that nearly everyone seems to be caught up in it, jumping on the bandwagon. 

I feel uncomfortable. I find it terrifying that this asshole dude is figuratively being tarred and feathered, pilloried and otherwise destroyed because he killed a beloved lion in Africa. I'm aware that he perhaps is a stand-in for nearly everything that's going wrong on our planet -- the rape and exploitation of all that's beautiful and natural -- but I still can't shake the dis-ease.

On the other hand, I'm complicit in feeling a simmering rage about the apparent daily collision of civil servants and black people. The clusterfuck of cops shooting black people every single day for minor traffic violations or perceived insult is beyond belief, even as the deadly force is a stand-in for racism -- a deep-seated and pervasive disease that you could say is the rotten core of this country. The response, though, compared to that of the lion and the dentist, seems tepid. I'm not a moral relativist, but I find this unsettling.

The hysteria around the dentist is scary to me. I think everyone has gone out of their minds. They are literally upon him. Evidently, hundreds and hundreds of animals are illegally poached and slaughtered each year, yet the outrage is directed at one human being and his family. What next? 

While I wouldn't want an angry mob with pitchforks and burning torches to descend upon any number of police officers who have shot and killed black men and women for minor traffic offenses, what do we do with the rage?  

I don't have any answers, but I do think people should knock it off with the lion and the dentist. As for the rest of it, my own rage, simmering, is but a tiny drop and it behooves me, like many white people of privilege, to sit in the moment and listen. These are intense times, and during intense times, I'm going to go deeper within even as I listen, remain open and increase my awareness of what my fellow citizens of color are telling me.

I think the palliative for fear and anger is to stand firmly and wakefully in the moment. It’s like the old Zen master saying, “Come with me. Let’s fill the well with snow.” It’s a hopeless task: The snow melts; the process is endless. We don’t take action because we expect a certain result; we do it because it needs to be done. We pick up the shovel not because we’re going to fill the well with snow but because shoveling is the dharma activity of that moment. We show up for the impossible.

Bonnie Myotai Treace