Why are autistics pissed off?

Karen McCarron was desperate, or so she said, when she put her three-year-old autistic daughter in the car for a ride. After a while she parked, put a plastic bag over her daughter's head, and suffocated her. That was the day before Mother's Day, 2006.

Four days earlier, Autism Speaks had released a short film, Autism Every Day. The documentary, full of unmanageable children and hopeless mothers, portrayed devastating images of families living with autism. Alison Tepper Singer, one of the mothers interviewed (and the executive vice president of Autism Speaks at the time) said the following:

“I remember that was a very scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jodie in the car and driving off the George Washington Bridge. ... It’s only because of Lauren, because I have another child that I probably didn’t do it.”

She was speaking, by the way, in front of her autistic daughter. (6:10 minute mark)

Ali Elmezayen, on the other hand, wasn't desperate; just greedy. So, after purchasing six million dollars worth of life insurance, he rolled down his car window, drove his two autistic sons and his domestic partner off a Los Angeles pier, and then swam to safety himself. The boys didn't survive. A third son, not autistic, was away at camp. That was in July, 2019.

According to the Autism Self Advocacy Network (ASAN), 600 people with disabilities have been murdered by their parents or caregivers in the past five years. The problem is pressing enough that ASAN has published an anti-filicide toolkit. 

Murder of the disabled is unspeakable and unfortunately, it is timeless. But in the case of autistics, special credit for encouraging filicide goes to the one organization that was supposed to advocate for them: Autism Speaks. 

Yes, that Autism Speaks, the one with the puzzle pieces and the happy-go-lucky fundraising walks and the "Light it Up Blue" campaign every April.

Autism Speaks has ingrained American society with the stereotypical image of the autistic child: unresponsive, screaming, unmanageable, and not even really there. 

AS was formed in 2005 by Suzanne and Bob Wright (Bob Wright was an executive at NBC) after their grandson was diagnosed with autism. After an infusion of $25 million by Bernie Marcus -- the founder of Home Depot -- AS quickly became the organization purportedly advocating for the autism community.

Dollars that had previously gone to local organizations for family services were quickly siphoned off by AS and diverted to research, lobbying, and "education."

Autism Speaks wasn't interested in providing services. Its mission was to find the cause of autism and eradicate it. Among its highest priorities was research exploring the link between vaccines and autism. 

From the beginning, AS used fear to vilify what it saw as the scourge and tragedy of autism. The image we have of autism today is a direct result of this very effective campaign. 

AS's message was clear and consistent: Your child is gone now. And the burden of caring for what remains of them will inevitably lead to divorce, poverty, and constant shame. 

Consider this excerpt from AS's very dark 2009 video, "I am Autism." The mood is grim: The foreboding sound of a haunting wind. A relentless parade of lost-looking autistic kids. And, from a menacing narrator: 

I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently. And with every voice I take away, I acquire yet another language.

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined.  

And if you’re happily married, I will make sure that your marriage fails.Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain. ....

I am autism.... I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?  

In 2013, AS issued a "call to action" written by Suzanne Wright:

If three million children in America one day went missing -- what would we as a country do? .... These families are not living. They are existing. Breathing -- yes. Sleeping -- maybe. Working -- most definitely -- 24/7.  This is autism. Life is lived moment-to-moment. In anticipation of the child's next move. In despair. In fear of the future. This is autism.

Following Wright's statement (later removed from the website), the sole autistic in AS's leadership resigned in disgust. 

Autism Speaks has significantly cleaned up its act, and has actually done some good, but only under heavy pressure from the autistic community. The organization has yet to take responsibility for its dark history. And while AS finally conceded that there is no link between autism and vaccines, its priority is still research, lobbying, and education. A whopping 2% of its budget goes toward direct services for families. Far more goes for bloated executive salaries. 

AS buoyantly notes that it took the word "cure" out of its mission statement in 2016, and indeed autistics had been pressing for this because they don't see autism as a defect to be cured. However, AS doesn't acknowledge this perspective. They only say that they've stopped looking for a cure because they don't think they'll find one.

Meanwhile, AS has never allowed more than token representation by autistics on its board. There have never been more than 2 autistics on a board of 28, and currently there's just one. Imagine if the Ms. Foundation had only one woman on its board!

It's also troubling that some of the original board members still serve, and Suzanne Wright continues to be glorified as a hero on the website. So it's no wonder that autistic self advocates continue to condemn the organization. 

All in all, Autism Speaks has a long way to go before I light it up blue in April. 

Prepare to be counted and analyzed. The Donald has found a workaround.

Remember that pesky Census 2020 question about citizenship that Trump wanted to put on the census? And the courts stopped him?

Well, he found a workaround via executive order. And so, on December 20, the Department of Homeland Security quietly released a privacy assessment about an agreement to exchange information with the Census people.

Now, I figured there was something up Trump's sleeve, but I didn't expect it to be this pernicious. This isn't about gathering numbers anymore. It's about Donald Trump's executive agencies specifically matching names, addresses, social security numbers, visa applications, race, etc. etc. to decide whether you -- yes, you personally -- are a citizen of the US. 

Here's some of the language DHS buried in the middle of the report:

     The Census Bureau plans to use several administrative data sources of citizenship and immigration status in a statistical model that will produce a probability of being a U.S. citizen, a lawfully present non-citizen, or an unauthorized immigrant on April 1, 2020, for each person in the 2020 Census. The citizenship and immigration status probabilities will be used together with age, race, ethnicity, and location information from the 2020 Census . . . . 

     ... Person records in each administrative and survey data source, including the 2020 Census, will be validated and assigned a unique person identifier, called a PIK. The PIKs will be used to link each person’s citizenship information to his/her 2020 Census record. The validation process ... involves comparing records received by the Census Bureau to reference files using fields such as SSN or ITIN, name, date of birth, gender, and residential address.  

     ... The model will produce a citizenship and immigration status probabilities for each person, which will then be combined with age, race, ethnicity, and location information from the 2020 Census to produce the CVAP statistics.

In other words, the United States government is going to combine all the information it has about you (which is considerable), and then take a guess as to whether you're here illegally.

What could possibly go wrong?

DHS says that the purpose of this project is "to determine the number of citizens, lawfully present non-citizens, and unauthorized immigrants in the country."

Just the number? Just statistics?

Then why the need to create an identification profile for every single person at every single address?  Just so they can count us?

Or is it so they can go door to door and round up the people they think don't belong here?

It just keeps getting better and better.

AA as patriarchy?

Recently the New York Times ran an opinion piece by Holly Whitaker, a recovering alcoholic, titled "The Patriarchy of AA." Whitaker has been sober since 2013, but she didn't get sober through AA. As a woman in a male-dominated society, she already lacked power and had always been expected to accept things unquestioningly. A 12-step program, then, was the last thing she needed, and so she found sobriety another way.

Her thesis is that the twelve steps, formed within a patriarchical culture, are best designed to break down white male privilege, but can be destructive for women.

Whitaker is careful to point out that AA does work for many people, including many women. But she challenges the assumption that there is only one way to get sober.

And on that point she is absolutely right.

Earlier in my sobriety I felt really threatened by criticism of 12-step programs. For me, it was Stanton Peele's insistence that alcoholism is not a disease and that moderate drinking is an appropriate goal for alcoholics.

Peele's assertions scared me. What if he was right? What if this miraculous new life was an illusion, a mirage, and it would come crashing down because it never really worked to begin with?

Old timers assured me that any alcoholic who tried moderate drinking would fail.

But... what?

Many times I've heard people smugly predict that someone is going to drink again because they're not working the program the "right" way. I've done it myself. Even the founders were guilty of it, bemoaning the fact that an atheist was staying sober month after month.  "When, oh when is that guy going to get drunk?"

It's like we want them to fail. But do we, really? Would we rather the person die of alcoholism than demonstrate that there are other roads to recovery? I certainly hope not.

I no longer freak out if I read something heavily critical of 12-step recovery. I just remind myself that it's right for me. For all I know, it may be the only thing that works for me, so I'm disinclined to experiment. But AA as an organization has never claimed to have a monopoly on sobriety.

Criticism is nothing to be afraid of. It doesn't diminish my recovery in any way, as long as I keep doing what works for me. Recovery is not a zero sum game.

And if someone else finds a different road to recovery?

It means they get a second shot at life, too. And that's worth celebrating.

Kryptonite redux

Well, now. That was self-indulgent, wasn't it? For those who saw my last post (it made it all the way to 7 before I took it down), not to worry.  I'll be talking to the shrink about changing up my meds. And thank you for reining me in.

For those who didn't see it, here are the takeaways: First, our local roundup did a recovery show a few years ago that turned out being pretty magical, and I'm really proud of it because I wrote the original script. And second, Anita Mann is beautiful.

So there ya go. I love you all.

Is that a She-wee in your pocket, or are you just happy to see me?

And I thought it would bring down the patriarchy.

Remember oh, so long ago, when I did that post about female urinary devices, or FUDs? Of course you don't, so here it is.

I thought I would do an update - you know, see how the feminist uprising is coming along. Once women can pee standing up there's just no stopping us, right?

First, the bad news. The patriarchy is alive and well. You may have noticed that yourself along the way.

In other sad news: the Shenis appears to have gone to that great big ladies' lounge in the sky. A few artifacts have survived, though, including a Facebook page and an entry in the Urban Dictionary. Oh, and this rather disturbing YouTube commercial that demonstrates the reason for its demise better than I ever could.

Now for the good news: the uprising continues.  Time was, the only people who knew about female urinary devices were obscure bloggers desperate for a topic and, well, other pioneers like myself.

No more! The GoGirl, in particular, has flourished. She is readily available on Amazon. And at Walmart. And at Bed Bath and Beyond, for christ sake.

About the only person not hawking these things is the ShamWow guy.

Even Wish has a knockoff for two bucks plus shipping. (I'm tempted to do a YouTube review to see how it stacks up against the Shewee (10 colors!), the GoGirl (comes in khaki!), the P-Mate (disposable!), and the Tinkle Belle (ridiculously expensive!))

Meanwhile, the Equal Rights Amendment is coming back, and women are running for president. Coincidence? I think not.

The FUD is working. Hear us roar.

If you don't like the way I drive, get off the sidewalk.

I flunked Driver's Ed in high school.

My contribution to the school's literary journal that year was an essay about how I made my driving instructor cry. An exaggeration, of course, but hey, it got me published.

I drove for a while in high school, but after I put a hole in the gas tank -- backing out of the garage -- I had had enough.

So I drove less and less, and ended up not driving at all. By the time I stopped drinking, I was afraid to start the car, much less put it into drive.

I didn't start driving again until I had been sober for almost a year. I had moved to Albuquerque to take care of my mom, and it was either drive or starve. But then we moved to Boston, where it seemed wisest to let my husband take back the wheel. Because, you know, Boston. Eventually I did learn to drive, but my knack for fucking things up meant I didn't always have a car.

Now I have a better understanding of why learning to drive was such a nightmare,  and if my parents had known what I know now, I probably never would have learned to drive.

But drive I do. I've driven on a snowy mountain road at night in the middle of a blizzard. I've driven on I-285 during rush hour. I even drove in Boston once when I accidentally poked my husband's eye out and had to drive him to the hospital.  (Yeah, I really did that.)

Anyway, I drive, and after decades of practice, it's mostly second nature. And because I can drive, I don't have to wait for someone to pick me up from work. I can stay ten minutes late and my ride doesn't get pissed off. I can run to the store any time I want. I can take a drive down an inviting road just because.

After having spent so many years depending on others for rides, it's hard to overstate how liberating it is to drive.

Okay, so I occasionally try to put diesel in the gas tank, and sometimes I drive away with the gas pump still in the car, and if I get distracted I make mistakes, which is why you should drive when we go somewhere together.

But I drive. I drive.

And that right there is a bona fide fucking miracle of sobriety.

A TERF by any other name...

You may have heard by now that J.K.  Rowling has a problem with trans women. That's a big disappointment, since she has generally been a supporter of the queer community.

Sometime last year I was having lunch with a lesbian meetup group and someone mentioned that a trans woman had asked to join. "How cool!" I thought. "No way!" said the others. A civilized argument ensued, and I was most definitely in the minority.

Thus was my first introduction to terfdom. TERF, for those who don't know, stands for trans-exclusionary radical feminist. Basically, a terf believes that trans women are not real women and therefore should be excluded from women's spaces. It's rumored that terfs killed the venerated Michigan Womyn's Festival rather than admit trans women.

The idea, at least according to my lunch companions, is that trans women can't  possibly know what it's like to be a woman, because they were raised as men. They don't know, for example, what it feels like to feel unsafe in a bathroom when a man enters.

Wait, what? I call bullshit.

First, I'm pretty sure a trans woman feels a lot less safe in a public bathroom than the average cis woman. And that's probably true whether she's in the men's room or the women's room.

Second, no one can know the experiences  of another. So if women's spaces are only for women with shared experiences, which experiences are we talking about? Because a white woman has experienced a very different life from a woman of color. A wealthy woman has not experienced life as a woman in poverty. If you insist on experience as a basis for inclusion, then you are destined to be in a group all by yourself, my friend.

In any event, the whole "experience" argument is pretense. This became clear when some of the women at lunch said perhaps a trans woman could be included in the group if she has had surgery.

I'm sorry, what on earth does that have to do with common experience?

The bottom line is this: terfs are transphobic. Their beliefs may be sincere, but that doesn't make them any more palatable.

Now, at this point I should address the whole language thing. Many women object to the word "terf " They consider it to be a slur. They prefer "gender critical." In other words, they are demanding politically correct nomenclature.

Sorry, but bigots don't get to play snowflake.  And they don't get to obfuscate their agenda by cloaking it in softer, gentler words.

Not racists. Not misogynists. Not Nazis.

And not terfs.

Deleted.

So for the past few days I've been working on a very compelling post, all about how I'm more messed up and pitiful than you are.  Turns out it was just me being terminally unique.

So I'm trashing that one and posting this instead.  After all, who am I to deny you the opportunity to be messed up and pitiful, too?

Still, it's a bummer because it was really well written.

I love you all.

Our president. Unhinged. As usual.

So elequent:

 "You have cheapened the importance of the very ugly word, impeachment."

Yesterday, President Trump sent Nancy Pelosi a six-page screed on the impeachment "coup." It was typical Donald Trump, complete with references to his "perfect" phone call with Zelensky, his "landslide" victory in 2016, the firing of James Comey as "one of our country's best decisions," and the piteous cry that the Salem witch trials provided more due process.

The New York Times fact-checked the letter and found numerous misleading statements and out-and-out falsehoods. Knock me over with a feather!

Given the number of Capitalized Words in the Letter, the number of Explanation Marks!, and the level of hyperbole, I'm betting that the Donald composed this letter himself, although it was no doubt checked for grammar and spelling by someone who actually knows the language. I wonder how long he had to sit on the toilet to dictate it.

The really bad people in the world tend to self-destruct eventually. This guy will self-destruct as well. But how much more damage will he do before he implodes?

Moving. The Drama.

Prelude

No, I'm not moving. I wrote this years ago but never posted it. It's still my basic playbook for When Stuff Happens.

Chapter One

I need a new place to live, and I need it fast. Okay, well, I can do this. One foot. Then the other. Let’s see what happens. It could be great!

Chapter Two

Fuck. Fuck, fuck, fuck, fuck. I can’t do this. I can’t do it. I am not strong enough. If I can’t fucking move my finger to dial the phone, how the hell am I going to move a family? Fuck it. It’s over. We’ll have to live under a bridge, And I’ll keep everything I own in a shopping cart – no, wait, I’ll need two. One for my kid. One for me. I hope we can find a bridge in her school district. FUCK.

Chapter Three

Okay. I’ve got two weeks. As my mother used to say, pick up the bobby pin, wash the dish. Just keep moving. Just keep calling. Just keep doing the next right thing, and when I can’t figure out what that is, do the next thing right. Call the phone numbers in the ads. Talk to strangers. Tell them the truth. Ask the hard questions. Do you take pets? Do you care that I have bad credit? Be willing to hear the hard truth; better to know right now. Visit the houses that survive the inquisition. Let the Universe do its thing. Keep an open mind. Keep an open mind. Keep an open mind.

Chapter Four

I’ve made a decision. It feels right. I hope it’s right. What if it’s not? Shut up and pack. Just keep packing. Change over the utilities. Forward the mail. Reserve a truck. All these fucking details. I wish I could do this more gracefully.

Chapter Five

I am in moving hell, I think to myself. But that’s just for effect. The truth is, I’m really in moving heaven: I have some stuff worth moving. I have lots of help. I have a truck. I even have someone who knows how to drive a truck, thank God. I am in charge of this project. For better or worse, it is proceeding, and I am moving forward. 

I am moving forward. Oh, my God. I am moving forward.

Of all my fears – and there have been many – my greatest, my most intractable, has been the fear of moving forward. And here I am. I’m doing it.

Chapter Six

I think it's going to be okay after all. 

Elections Have Consequences.

For those of you who so despised Hillary Clinton that you sat out the 2016 election;

For those of you who decided Clinton's politics weren't pure enough for you, so you voted for a third-party candidate: 

Here are just a few of the stories in the New York Times over the last two days:

• Barr Dives Into the Culture Wars, and Social Conservatives Rejoice 
• Despite Warnings, Trump Moves to Expand Migrant Family Detention
• Trump Brings 2 Officers He Cleared of War Crimes Onstage at Fund-Raiser
• Trump Cripples W.T.O. as Trade War Rages
• For Trump, Instinct After Florida Killings Is Simple: Protect Saudis

This is on you. But so is the solution.

Mask, meet face.

Patience, please. Being diagnosed as autistic was a game-changer. I've got some processing to do and, well, I have this blog, so… yeah. 

I'm thinking today about masking. The act of trying to look normal. Every human being does it, of course. In the autism community it’s a big thing, and it’s generally considered unhealthy. 

And I am very, very good at it. 

As I recalibrate my self-esteem post-diagnosis, I have to ask: Where does the masking leave off and where do I begin? And how much of that mask do I really want to lose? 

See, I like that smiling is second nature to me now, even though I had to consciously train myself to do it. I like that I’ve mostly overcome my fear of driving. I like that I managed to get through law school. These things never would have happened if I hadn't masked my brains out.

On the other hand, all that masking is exhausting, and it doesn’t always work. Yeah, I masked my way through Harvard, but then I tanked as a lawyer because I tried to fake it and I failed. 

And as I've mentioned before, it’s not just the big stuff. It’s anything that’s new to me. All the small, new things that arise every single day, constantly, relentlessly, unless I confine myself to bed, which isn’t terribly practical, or fun.

I guess what I’m asking is this: Does it make my world bigger or smaller if I admit to you that I need help figuring out how to take the train across town? I mean, I’ll figure it out on my own eventually, I always do.  But I’ll arrive completely spent emotionally and physically. And I’ll tell you the trip was fine, because it couldn't have been as hard as it felt. 

In other words, I’ll lie to you. Just like I’ve been doing my entire life. And I'll barely notice that I'm doing it, because masking has become such a part of me. 

But here's the thing: because I masked, I finally did make it across town to get to you, and that's a very good thing. And I didn't have to let on, and next time, it probably won't be so hard.

So I wonder: Is it better to keep what's hidden, hidden?

The Subversive Librarian humbly takes her place on the throne.

So, here's something I never thought I'd say:

I am the Snow Queen. 

My boss's exact words. And me, raised in Phoenix!

Growing up, I saw snow exactly once a year when we would drive up to Flagstaff to play in it. One year my brother and I built a snow lady. She fell over because she was too top-heavy. But I digress.

When I moved from Phoenix to Chicago with my dad, we saw all this white stuff on the ground as the plane was approaching the city. My father assured me that it couldn't possibly be snow.

It was snow.

A few weeks later I walked half a mile through a blizzard to get to the mall for holiday shopping because I didn't know it was a blizzard.

And now, here in the wilds of rural upstate New York, with all of its wind and cold and its 131 inches of annual snowfall, I am the official, designated, honest-to-God Snow Queen.

My royal duties are appropriately light. I am the authority on whether we open or close in bad weather, based on who's willing to risk their lives to come in. And then I let people know, via two brief emails. Piece of cake, albeit frozen.

I am the Snow Queen. My boss says all I need is a tiara. I am patiently waiting.

On college finals and life in general

It's time for my bi-annual email to our library student workers. Since I'm actively blogging these days, and since now I'm a student myself, I'm posting it (again) here as well.   

I want to convey my thanks to the students who have done such great work for the Library. I'd also like to offer some advice. (Hey. I'm a mother. It's what I do.) 

As you head into finals, I know that you are facing a lot of pressure: pressure to study, pressure to get good grades, pressure to handle schoolwork and career and family, pressure to know everything!

Now, I’m not about to tell you to blow off your exams. But please keep things in perspective. Your grades are important, but they are not nearly as important as holding a child, watching a sunset, or counting your blessings. By the time the Hale-Bopp Comet comes around again (in about 2,400 years), no one will care if you got a C in English 101, or if you ranked last instead of first. Indeed, in the grand scheme of things, it really doesn’t matter whether you graduate at all.

What does matter – and what actually might matter in 2,400 years – is how you live your life. Not after you graduate, but today. Did you hug your loved ones? Did you treat yourself and others with dignity? Did you play fair? Did you take time out to listen to the people you care about? When things got so rough you couldn’t help yourself, did you give others the honor of helping you? Did you pass that favor on when things eased up? Did you do your reasonable best?

Many years ago I lost one of my students to suicide. Melissa was so loved that if she had just said one word – help – dozens of friends and family members would have been at her side instantly. Sadly, she never said a word to anyone.

Please don’t let life get so hard that it seems unbearable. And if it does, please – please – tell someone you need help.

Let college take your time and your energy. But don’t let it take your heart.

Blogging again from the bed.

It's the holidays. If you're depressed, you're not alone. For context, below is an old post about my depression. Please know, there is hope.

But first, you need to watch Gary Gulman's HBO special, "The Great Depresh." It's the best thing I've ever seen on depression, and it's also very funny. Here's the trailer. And no, I don't know how to fix the formatting.

Get yourself a 7-day HBO trial subscription so you can watch the whole thing. It's well worth it. 

And now, my old post:

At this moment, I am blogging on the bed. Next to me are two used cups; four cereal bowls with spoons, all licked clean by the dog; two empty yogurt containers, also licked clean; an almost-empty bottle of club soda from a couple days ago; my purse; a couple of used paper towels; and crumbs. Quite a lot of crumbs, in fact, both in and on the bed.

I’ve been living on my bed for the past three months. Eating on the bed. Playing cellphone games on the bed. Listening to NPR on the bed. Watching movies on the bed. This, even though I have a perfectly good living room and dining room and office. My day is spent traversing well-worn paths, and every damned one of them leads to my bed. Which, by the way, is on the floor because I've never put the frame together -- because I won't let anyone in my house to help me.

Depression. I've had it since I was about twelve, although back then I didn't know it had a name. You can see when it happened in the family photos: the light went out of my eyes. There was no there there. Alcohol brought the light back, until it didn't anymore. Later, sobriety brought relief. But even now depression is a frequent visitor. Thank goodness for meds that take the edge off.

Like addiction, depression is cunning, baffling, and powerful. It's just as patient, too, and as subtle.  It intrigues me, seduces me into unlit, unsafe places. Sometimes it breaks the door down with some big calamity like a death in the family. More often, though, it wafts in through the cracks by way of a small mistake, or a brief lapse in integrity, or a familiar sound that reminds me of failure. Sometimes I summon it myself by listening to really dark songs again, and again, and again. The buzz I crave.

Once depression gets a toehold, it takes on a life of its own. It convinces me that I'm just fine, while it reprograms my mind and my heart like malware running silently in the background. Before I know it, I'm in its caress, warm and thick and downy, sequestered from the world like a fetus in the womb – but also cut off from anyone who would help me find my way out. And honestly, at that point, I don’t always care if I find my way out or not.

Despair, with an isolation chaser.

I may not even know depression has taken hold until someone asks the right questions. Ask me how I am, and I'll tell you, "I'm fine. Now let's talk about you."
 
But ask me about my actions: Did you get the mail today? Did you open it? When’s the last time you changed your sheets?  Are there dishes in your bedroom? Have you been listening to sad music? When's the last time you showered? Have you been ignoring phone calls? How many meetings have you made in the last seven days?

By writing this post, I know I’m making the decision to stop. Frankly, I’m not thrilled. But if I waited until I felt like doing the right stuff, I’d rarely accomplish anything of value.
 
That's as far as I got with this post. Writing about it was all the action I could muster. It was just enough. 

It's not the sunshine I miss
but the summer storm
So seductive in its wrath,
so gentle in its caress
of the mountain behind me.
The smell of rain mingling
with earth, so crisp -
so inviting.
The eerie copper gleam of Sun's reflection
on wet pavement:
it is always evening when the rain comes.
I breathe deeply, and more deeply,
drawing in the fresh moist air,
perhaps one last raindrop
dancing on my face.
The storm is over but I linger on
in the arms of fading thunder
while a cool breeze bathes me
as if I were its child.

On God, or whatever.

I don't believe in Bible God.

There, I've said it. I don't believe that there is a personal, conscious god who grants wishes commensurate with the fervor of my genuflecting.

I admit the Universe does seem to conspire in my favor when I do the next right thing, and sometimes in a weird way.  I still believe the Universe is mere energy devoid of consciousness.

But I think maybe that's only part of it.

See, here's the thing. I sank into adolescent depression after my parents split, and I muddled through. I battled an undiagnosed eating disorder for decades, and I lurched from one diet to another, and I muddled through. I got married, got drunk a lot, got sober, graduated from college, somehow got through law school, practiced law for a few years. had a daughter, moved to the Navajo Nation, got divorced, discovered I was gay, got to be a law professor for a while, got a gig as a lobbyist and somehow successfully faked that for a few years, got a master's degree, entered and exited two destructive relationships, lost everything, rebuilt my credit, moved to Santa Fe not knowing anyone, ran a state court library, bought a house and a car, had a sleeve gastrectomy and lost 100 pounds, lost my job, and found another job across the country where I could reboot my career.

And so at age 61 I rented an apartment sight unseen, packed my car with two dogs and a cat and all the sundry stuff I could jam inside and on top, drove 1,900 miles by myself, carried everything up a bitch of a dark flight of stairs, and set up housekeeping, sort of, in a town completely foreign to me in the land of Oz. And I'm still sober.

That's a lot for anyone.  For me it's a freaking miracle. I mean, how did I manage all of that?

I did it with help. A whole lot of help. A shitload of help! Financial help. Logistical help. Truck-loading help. Cleaning help. Lots and lots of emotional and spiritual help. Help across the years, from many people, to whom I am very, very grateful.

But that's not God.

Meanwhile, we live in an ordered, unsentient universe constructed from the mystery and beauty of mathematics. Also not God.

I've always considered these two entities -- the help I've gotten over the years, and the matter and energy in the universe -- as unrelated. There are the people who help me, and then there's mathematics, and while both are exquisite, neither is supernatural.

The separateness is what I'm rethinking. Maybe they aren't so separate.

There is a lot about the universe we just don't understand. Light can be either a wave or a particle. A cat can be both alive and dead. A quantum particle in one part of the universe can act on another particle a billion light years away.

The Big Book says that god is either everything, or it is nothing. I disagree. I think it can be everything and nothing. Energy alone is essentially nothing. It's simply a force that holds atoms together. God is a noun, without much meaning or relevance, at least to me.

But maybe when that energy merges with the consciousness of the people in my life, God becomes a verb. It envelopes me, becoming everything. Maybe, somehow, the combination allows a collective consciousness to work actively in my life to help me get through each day.

To put it another way, maybe God is the Singularity without the computers.

Okay, so I'm willing to entertain the idea that when the universe and people combine, they somehow synthesize something new and conscious and even helpful. A kind of alchemy.  I suppose if it works, what do I care if it's true?

All my life I've felt like i was in a small boat in a hostile sea, and all my energy went toward just hanging on for dear life with one hand while I desperately tried to row against the waves with the other. Maybe instead my boat was being towed all along, and my oars were never of any use anyway.

Singularity. Huh. That could work.

But whatever it is, God or not-God, I am so grateful to all the people - all of you - who have been towing my little boat steadily along. Words simply can't suffice.

More, revealed.

I am a cornucopia of comorbidities. I thought it was just me, but turns out it’s all related to autism. Who’d a thunk? 

There’s dyspraxia. Dyspraxia used to go by the charming name of “Clumsy Child Syndrome,” and it’s common in autistics. I’ve been regularly tripping on my own feet since kindergarten. Sometimes I have trouble coordinating a knife and fork. And if you’re trying to give me directions, please don’t tell me “left” or “right.” Just point, okay?

And then there’s dyscalculia, which I won’t attempt to pronounce. Also common in Autistics.

If I go out to lunch with a group, don’t ask me to figure out what I owe if you want to leave before the waiter goes home. Just tell me. If it sounds even halfway fair, I’m not gonna argue.  

Add to that face blindness, or prosopagnosia, which I also won’t attempt to pronounce. Translation: You know that well-dressed guy in the gray suit that’s always hanging around campus? We met six times before I was finally able to recognize him. He’s the university provost. Spelled B-O-S-S. 

Not to mention my terrible short-term memory. Your fifth step is safe with me, honey, because I probably won’t remember about two-thirds of what you tell me. And it’s not that I wasn’t listening, either. I drank in every word, I really did, and it mattered to me. 

And so, when I talk to you, if it seems like it's all autism, all the time, that's because it is. Every aspect of my life has been steeped in autism and its comorbidities, and I’m only just now finding out. It has always been there, it's never going away, and I’m good with that, but it’s taking some getting used to.

My life, in context.

Bill Maher's Shiny Tin Foil Hat

I watch Real Time with Bill Maher even though I suspect that he’s sort of a jerk in real life and I find some of his positions offensive. But I agree with him about most things, and I appreciate that he invites conservatives onto his show, so it’s not a complete echo chamber. And, well, he makes me laugh.

Anyway, the point is, I watch Bill Maher, and I watch him religiously (see what I did there?). 

But a couple of weeks ago, Maher added something new to his wardrobe that I didn't expect: a shiny tin foil hat. And it wasn't at all becoming. 

Maher's opening guest on Friday was pediatrician Jay Gordon, who is a vaccine skeptic. And inexplicably, it was a softball interview. Their united message was this: we can't be absolutely sure that vaccines don't cause autism.  And while neither man was telling the audience to avoid vaccinations, the clear message was that it's perfectly okay if you do, because doctors don't really know what the fuck they're doing anyway. 

Nowhere in the discussion was it mentioned that correlation does not equal causation. Neither Maher nor Gordon brought up policy implications or the concept of herd immunity. You would think those would be worthy of a casual mention at the very least, but no. Maher did offer this bit of unimpeachable evidence, though:  one time when he got a flu shot, he got the flu right away. 

So Maher and Gordon want you to know that there is a one-in-a-million chance that your kid could get autism from a vaccine. 

This, as you already know, is not only ridiculous, but dangerous The study that linked autism to the MMR vaccine has been roundly debunked. Indeed, the researcher was such a bad actor that he lost his medical license over the study. The recent measles outbreaks are effective reminders of the impact anti-vaxxers have on public health.

Autistic self-advocates find the anti-vaxx movement highly offensive for another reason as well: When an anti-vaxxer decides not to vaccinate their child, they are really saying that they would rather have their kid die from a terrible disease than to be autistic. 

Autistics aren't so okay with that sentiment.

As most Autistic self-advocates see it, autism is a feature, not a defect, and while most Autistics need support -- and some need a whole lot of support -- that doesn't mean they all want to be cured (although this isn’t universal). Many of them -- of us -- see autism as an essential part of who we are. What we want is not a cure, but accommodations.

The perception many people have of autism -- a terrifying fate worse than death and a destroyer of families -- is the result of a well-funded, 15-year fear campaign led by Autism Speaks, the most well-known association related to autism. The organization has justly earned a great deal of criticism by most Autistic self-advocates for its scare tactics and dogged efforts to eliminate autism at all costs. Indeed, it is considered downright villainous by some. Autism Speaks has cleaned up its act somewhat, but it has a long way to go. I’ll talk more about that another time.

The point is, Bill Maher is a moron when it comes to this subject. So get your ass vaccinated, and vaccinate your kids, for Christ sake. Because even if vaccines did increase the risk of autism -- and they don't -- autism is not a fate worse than death. And frankly, we're not inclined to be eliminated.

The Upside of Getting Older

Lake Ontario's waves are glittering in the sun like dancing stars, and the warm breeze is gently teasing my face. I contemplate the steaming plate of poutine in front of me — my new favorite comfort food -- while an impatient gull eyes me from the next picnic table. This is not the life I anticipated.  

It's been thirty years since I graduated from law school. Thirty years! Now I'm in college again, working on a second bachelor's in creative writing. I don’t expect to finish it — I just want the discipline that comes with due dates. 

Backing my Subaru out of the gravel parking lot, I coast back to the library, passing dozens of students walking to their next classes. Someday they'll be accountants, drug dealers, grocery store clerks, hedge fund investors, homemakers, white collar criminals, lawyers, construction workers. 

But today, right now, they’re just kids. Kids with furry slippers, plaid pajama bottoms, and cat ears. Kids with green hair and bow ties. Kids carrying beat-up backpacks and kids pulling their books behind them on designer wheels. Kids of every body type, every color, every opinion, every gender. Just kids, in all their glorious diversity.

As I stop to let a couple of them cross the road, it occurs to me that they have no idea what lies ahead. They don’t know if they’ll live until they’re 93 or die at 25.  Whether they’ll ever be homeless. Whether they’ll be loved or reviled. They don't know how much joy or pain they can endure. They don't even know if they'll graduate.

And then it hits me: I don't have to figure out my life, because it has been laid out for me. I already know how it most of it will turn out:

There will be marriage, and a beautiful, wonderful daughter.

I'll get drunk a lot and end up clean and sober, at least for a while. I'll break a few bones, but recover easily. I’ll graduate squarely and honorably in the middle of my class at Harvard Law. 

I'll lose jobs unjustly, and I’ll get jobs I don't deserve. I'll be a lawyer and a librarian and a lobbyist and a professor. I'll screw that up and be a barista for a while, and that is where I'll find redemption. 

I will write over a thousand resumes.

I’ll live on the Navajo Nation, and in Santa Fe, and in Georgia, of all places.

I will have amazing friends and wonder what they see in me. I'll write a little play and get to see it produced, and I'll sing on stage. I will help Tibetan monks release a mandala into the Great Lakes.

Some of it is going to be really rough. There will be a divorce, followed by a lot of terrible decisions. I'll live without electricity or hot water. The sensation of fleas on my scalp will become almost routine, and I’ll sleep on a chewed-up mattress marinated in urine. Worst of all, my devastatingly poor judgment will weigh heavily on my daughter, and I will know that this shit show was completely of my own making. I’ll spend the rest of my life seeking forgiveness, mostly from myself.

Still, in the middle of this wreckage I'll haul two newborn foals from Kentucky to Georgia in the back of a rented cargo van, and that part will be miraculous and incredible and absurd.

I will survive every single one of these things, and I will live for at least 62 years. So I already know it’s going to be okay, and I am filled with relief and gratitude. 

Someday these kids will have their answers, too.