Tuesday, March 31, 2020

Nope. Not lighting it up blue in April.

It's Autism Acceptance Week, so here's a repeat of my post about Autism Speaks.

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 , 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. 

#redinstead.

Friday, March 20, 2020

The choice to relapse.

2007. My life was a holy mess, and I didn't know how to clean it up. I had at least managed to finally get out of an unhealthy relationship, but the rest was a shit show.

So it was such a blessing having my sponsor come live with me for a while. He was brilliant and bigger than life and so wise and so much fun, and it was a relief to have a second grownup in the house. And someone with ten years sober, to boot.

It was about midnight when I heard the crash, and I went downstairs to investigate. There on the living room floor was my sponsor, naked. He couldn't talk, couldn't coordinate his body. It looked like a stroke, and I called 911. When the EMTs arrived, they wanted to know what drug he was on. Indignant, I said he's my sponsor and he didn't take anything.

But of course, I was wrong, and I knew it when he seemed overly anxious for me to fetch his gym bag. It was hydrocodone. A prescription filled only a day earlier, under a fake name, and he had taken most of them. After that, the empty beer cans were no surprise. He was in full blown relapse, and had been for quite a while.

And oh, how I wanted to join him! My life was so completely fucked up, I didn't really care whether I drank or not. Staying sober sure wasn't doing much for me. It was hard to imagine that drinking could make it any worse.

But I didn't drink, at least not yet. In the meantime, like any sick codependent. I told him I'd give him one more chance. The obvious happened, and I kicked my sponsor out of my house on the night of Christmas Eve, 2007.

Our friendship didn't end immediately. A few days later, when he and I were out and about, I locked us out of the car at a convenience store.

And that, that was the moment. I was ready. I was so ready, and this man was ready for me to join him. So when I said I really wanted a drink, he offered to go back into the store and get us some.

I don't know why, but I said no.  Whatever the reason, I've never regretted that decision.

I've heard so many people say it: "I've never heard anybody come back to the rooms after a relapse and say how wonderful it was."

Well, of course you haven't. If it's working for them, why would they come back at all?

On the other hand, I've never heard anyone say that they regretted not drinking.

Alcohol and drugs aren't going anywhere, and neither are my addictions. The choice to drink or use will always be in my back pocket, and perhaps there will come a time. Meanwhile, I lose nothing by waiting.

So for today, my plan is to stay clean and sober. And I'm  pretty sure that's a decision I won't regret in the morning.

Monday, March 16, 2020

Can't go to your 12-step meeting? Here's help.

These are scary times.  Twelve-step meetings, as a general rule, are rarely cancelled, but as the Daily Beast points out, this time it's different. Skipping some meetings may be wise, and perhaps even mandated.

That said, this is not the first time people in recovery have been unable to get to meetings. They might be in the battlefield, or in a remote location, or experiencing another kind of natural disaster. And said people have shown, time and again, that it is possible to stay sober even under these trying conditions. The literature has something somewhere about how soldiers in World War II stayed sober without meetings. (I'm frankly too lazy to look up where it is -- if  you know, feel free to drop the citation in the comments below.) They stayed sober, and they didn't have the internet. 

Here's the take-away: This is no reason to relapse. In fact, it's not even an excuse to skip meetings.
Nearly all these groups offer some version of virtual meetings. I've assembled some links below. I also included a link to any specific statements about COVID-19 that I found. If  you don't see your support group here, Wikipedia has a list of 12-step groups. If you want to add your group, feel free to do so in the comments.

Note to people with more than a year in recovery: Virtual meetings tend to have a lot of newcomers. So your voice is needed at these meetings. Please attend some, even if you're able to stick to your regular meeting schedule.

Stay safe, stay well, and stay sober, dear friends.

Adult Children of Alcoholics
Link to phone and online meetings: https://adultchildren.org/meeting-search/

Al-Anon
https://al-anon.org/pdf/covid19-info.pdf
Link to virtual meetings: https://al-anon.org/al-anon-meetings/electronic-meetings/

Alateen:
Chat meetings: https://al-anon.org/newcomers/teen-corner-alateen/try-an-alateen-chat-meeting/

Alcoholics Anonymous
https://www.aa.org/assets/en_US/en_updatesoncoronavirus.pdf
Online Intergroup: http://aa-intergroup.org/

Cocaine Anonymous
https://ca.org/content/uploads/2020/03/COVID-19-advisory.pdf
Online meetings: https://www.ca-online.org/

Co-Dependents Anonymous
Online meetings: https://coda.org/find-a-meeting/online-meetings/
Phone meetings: https://coda.org/find-a-meeting/phone-meetings/

Debtors Anonymous
https://debtorsanonymous.org/wp-content/uploads/Coronavirus_update.pdf
Virtual meetings (use drop-down for type of meeting): https://debtorsanonymous.org/meetings/?tsml-day=any&first-call=1

Eating Disorders Anonymous
links to virtual meetings:
http://eatingdisordersanonymous.org/meetings/?tsml-day=any&tsml-region=us

Emotions Anonymous
https://emotionsanonymous.org/file_download/5acea207-4fb5-4f06-bce6-65ea05b16a61
Link to virtual meetings: https://emotionsanonymous.org/what-we-offer/find-a-meeting/phone-and-internet-meetings.html

Gamblers Anonymous
Immediate assistance: http://www.gamblersanonymous.org/ga/hotlines

Narcotics Anonymous
Links to virtual meetings: https://www.na.org/?ID=virtual_meetings

Overeaters Anonymous:
https://oa.org/app/uploads/2020/03/OA-COVID-19-Letter-2.pdf
Links to virtual meetings: https://oa.org/find-a-meeting/?type=1

Sex and Love Addicts Anonymous
https://slaafws.org/wp-content/uploads/COVID-19%20Statement%2031420.pdf
Links to online and phone meetings: https://slaafws.org/meetings

Thursday, March 12, 2020

Okay, maybe there is a plan after all.

Dear Mom,

"If we can be together when we're 2,000 miles apart, then death isn't going to keep us apart."

Remember when you said that? It was comforting, although I was secretly pretty skeptical. But in that same conversation, I asked for a sign (if you could do it without scaring the shit out if me) and when it happened, you sent one. You were with me.

When I landed a dream job in Santa Fe, and a place to rent dropped right in my lap, I knew that the move was the right one, and I suspected you had something to do with it.

And when the house happened, well, then I knew for sure. You found me a historic house in perfect condition, that I could afford, right in back of the freaking clubhouse, for God's sake. Stepless, too, and on the bus line, with a grocery store within walking distance. So not only was it the perfect house for now, it was one I could grow old in. And thanks to my job, I would have a pension. I was in a city I loved, with great sobriety and solid support, the perfect job and a pension to boot. I was set. I was going to be okay.  Thank you a million times over!

And then, two years ago, the job went away, along with any hope of a pension. What the fuck?! This wasn't the plan. What did it mean that it all went away? That it was just coincidence? That you were gone now? That you were never there to begin with? The gifts you gave me, layered on top of your unwavering faith in a higher power, had given me a foundation for a vague faith of my own, a faith that I depended on: When I do the next right thing, the Universe seems to conspire in my favor.

So when it all went away, well....

But at least someone rented my Santa Fe house right away, so that wonderful little crib was still part of my future. The plan was bruised, but still viable.

Then I lost my tenant, and I couldn't make the mortgage. And again I had to ask, what the fuck?

With deep sadness (and renewed bitterness against That Person), I put my little house on the market. At least I wouldn't have the financial obligation anymore, but man, the whole thing really sucked. I mean, there was no plan anymore, and I was alone, really alone, stranded in the wilds of upstate bum-fucking New York. Wonderful job, yes. But nothing remotely resembling a plan.

Well. My little house sold in less than 24 hours, for the full asking price. It closed last week without a hitch. The smoothest, fastest real estate transaction I've ever had. And as it turned out, that house was a great investment. Like, really great.

And then I knew again. Mom. This was your plan B, or maybe this was the plan all along. You did once say you wished you could leave an inheritance. And that's exactly what you did.

This understanding makes it all okay. I can work with this, even if turns out to be just a comforting delusion. There is no down side to believing.

So thank you, Mom. I love you now and forever. And thank you for your tenacious and unconditional love.

I miss  you.

There's a parallel here. But at what cost?


From H.G. Wells' War of the Worlds:

In another moment I had scrambled up the earthen rampart and stood upon its crest, and the interior of the redoubt was below me. A mighty space it was, with gigantic machines here and there within it, huge mounds of material and strange shelter places. And scattered about it, some in their overturned war-machines, some in the now rigid handling-machines, and a dozen of them stark and silent and laid in a row, were the Martians—dead!—slain by the putrefactive and disease bacteria against which their systems were unprepared; slain as the red weed was being slain; slain, after all man’s devices had failed, by the humblest things that God, in his wisdom, has put upon this earth.

Monday, March 02, 2020

What patriotism looks like

It looks like Mayor Pete, who cares more about saving the nation than getting to be the president. Aware that too many moderate candidates are skewing the polls, he withdrew before Super Tuesday, rather than waiting to see how he does.

Buttigieg was my original choice, and I hope we haven't seen the last of him. We could sure use him in the Senate.

I'm not that wild about Biden or Sanders - Warren is my candidate now - but I'll gladly vote for either of them if that's what it takes to get that lunatic out of office. The nation can survive business as usual. And it can survive a socialist president. What it can't survive is fascism.

Vote blue no matter who.