Wednesday, November 25, 2020
Thanksgiving, and I'm not okay.
Saturday, September 19, 2020
That time RBG came to Santa Fe and got me in trouble with my boss
Ruth Bader Ginsburg was coming to Santa Fe! I was working at the New Mexico Supreme Court at the time. She was speaking at a school or something, and then she was coming to the Court!!
RBG was scheduled for two events at the Court: First, a luncheon with the state supreme court justices. Second, a Q&A for some women lawyer's symposium (I keep thinking ladies' auxiliary but of course that's not what it was).
Now, a good boss would have made sure her staff got the once-in-a-lifetime opportunity to see RBG speak, even if it was remotely from another room. But that day, we were personae non gratae -- to the extent that the New Mexico chief justice acknowledged our existence at all.
My office was right across the hall from the courtroom, so it was hard to miss the hubbub. The lucky attendees filed into the courtroom and, after some settling, the doors closed.
You could see inside if you put your face right up to the gap between the double doors. I sidled up to the security guard and glued my face to that gap like a beggar looking in the windows of a Waffle House. The guard -- an ally -- said, "why don't you go on in?"
"Uh, I'm pretty sure that's not allowed."
"But," he said, "There are empty seats in there. At least you could ask for permission."
Well, I was wearing appropriate court attire, and there were empty seats, and I was the court-appointed State Law Librarian. So I tagged the woman who had the invitation list and I asked. She said it was probably okay but she wanted to check with somebody else. She disappeared, and after about five minutes, she returned and told me I could go in.
Score! I took a seat in the back.
Now, I don't remember what RBG talked about, except that she was wonderful. I was just thrilled to be in her presence, albeit a little uneasy. I confess I was also a little contemptuous of the privileged women surrounding me who had managed to get into this gig legitimately.
The chief justice glanced my way while she was introducing Justice Ginsburg. She didn't glare, but she didn't smile, either, which made me even more uneasy. Still, I drank in RBG's wisdom and kindness, and when she was done, I eased out the door (I correctly calculated that I shouldn't stay for the group picture).
I don't know who told the invitation lady that I could go in. I do know, however, that it wasn't the chief justice. She came to my office a couple of days later -- the only time during my tenure that she did so.
She was furious.
I explained that I had gotten permission, and I explained that the lady who gave me permission had gotten permission. She wanted names, which of course I didn't have.
In any event, she didn't particularly care how I had gotten in, just that I had. So I apologized. And I apologized some more. And then I sent an email apologizing deeply and sincerely. I pretty much prostrated myself while genuflecting. It didn't make any difference. I lost an important ally that day.
But given the chance for a do-over?
Yeah, you guessed right. I didn't regret it then, and I don't regret it now.
Rest in power, RBG.
Tuesday, September 15, 2020
There is hope for us yet.
I spent my seventeenth year getting high and drunk. Songbird, on the other hand, is doing some pretty spectacular political parodies.
If she is our future, I think we're gonna be okay.
Sunday, August 02, 2020
Black Lives Matter: I thought I got it. I didn't.
In the past few weeks I've discovered I was actually clueless.
I've known I can't fully understand what it's like to drive while Black, work while Black, breathe while Black, exist while Black. What I did know turned out to be wrong. I thought racism existed in pockets. It was in certain cities or certain regions or neighborhoods or social circles, or certain times of day or night. Basically, everywhere I wasn't, because it didn't seem to be affecting people I hold dear. It wasn't until I watched their frustrated videos that I realized I have it wrong. The effects of racism are everywhere and always. I didn't understand this. Or maybe I just didn't want to know.
I'm grateful for those videos, grateful for the education. But it's not the job of Black people to educate me, or to reassure me that I'm not a racist, or to make me feel comfortable. It's not their job to motivate me.
It's on me to take the initiative to get educated, and to identify and fight racism, especially in myself.
Acknowledging my white privilege isn't enough. I am called to weaponize it.
So, what now? Now I do what it takes to learn. I listen to people who want to talk, and then I listen some more. I contact appropriate organizations and ask how I can help. And when I screw it up and get it wrong -- which I'm bound to do -- it's my job to be teachable.
I have a lot of work to do. I have a lot to learn.
It's on me.
Friday, July 31, 2020
Congratulations to My Fabulous Disease!
The #GLAADawards for Outstanding Blog goes to... @MyFabDisease. Congratulations Mark! pic.twitter.com/4onGOXdpTj— GLAAD (@glaad) July 30, 2020
Saturday, May 02, 2020
What to do about Joe Biden?
The "me too" part of me echoes the New York Times editorial: These allegations should be investigated. After all, every outraged comment from the left is lifted straight from the Republican playbook: "Why did she wait so long?" "But there are inconsistencies." "This happened 25 years ago, so who cares anyway?" "The other side is worse." "Other women in his office say he's been a perfect gentleman."
There's not a thing being said by the left, in objecting to further investigation, that wasn't said about Kavanaugh, or Clarence Thomas.
Actually, that's not quite true. We on the left have added a new one: "She praised Putin!" Well, if that's not proof that she's lying, I don't know what is.
Unlike the accusations against Al Franken -- which were disheartening but not all that disturbing -- Biden is actually accused of violence -- of penetrating the accuser. That's a big deal. If a Republican candidate were accused of the same acts, we would be all over it -- as well we should be.
So as much as I would like this case to be different from Kavanaugh or Thomas, I just don't see how it is.
But then there's the "let's save the nation" part of me. Even if the accusations are proven true, I'm voting for Biden. So why go through the drama of investigating? Why risk the presidency? Why risk democracy? Besides, the other side really is worse. Trump has confessed to assault and has been accused numerous other times besides.
I can't, in good conscience, evaluate veracity based on whether the accused is red or blue. I need a standard that applies to both Democrats and Republicans. And that means we investigate, god damn it. And that really sucks.
That doesn't end the discussion, however. While it's important that we give accusers the benefit of the doubt initially, the accuser should still have the ultimate burden of proof. That's just as true when it's a Republican who's being accused. We shouldn't unconditionally believe an accuser on one side of the aisle, but completely dismiss accusations from the other side.
So how to apply this to the present case? Reade has accused Biden of sexually assaulting her. So far, there's no more reason to disbelieve her than we would disbelieve any other accuser. The fact that she was a Bernie supporter is relevant, but certainly doesn't settle the issue.
She now has the burden of providing some evidence, if she can (and let's note that the absence of evidence doesn't mean the crime didn't occur, especially when it comes to rape).
As of this writing no documentation has found regarding Reade's accusations, and this is certainly a problem for Reade. She claims that she filed a sexual harassment complaint in 1993 and surely finding such a document would be important evidence, although not dispository.
The left likes to point out that no documentary evidence has been found. However, given the large volume of documents to be sifted through, it is too soon to conclude that no such evidence exists.
I will say this, though: While the nature of the accusations aren't substantially different in nature, there is one big, big difference between the accusations against Biden and those against Thomas, Kavanaugh, and Trump: Biden has invited an investigation (as did Franken). That speaks volumes.
But it doesn't negate the need for an investigation.
Tuesday, March 31, 2020
Nope. Not lighting it up blue in April.
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.
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.
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.
"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?
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
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.
Friday, February 28, 2020
That time when Elizabeth Warren stabbed Stephen Colbert with a fork.
This video has me completely charmed, and has erased every one of my reservations. This woman will make a wonderful president.
Watch the whole thing. It's totally worth your time.
Wednesday, February 26, 2020
I fell asleep during the Guns of Navarone.
Well, yes, yes, I did. Last night I slept through The Guns of Navarone.
I tried to watch, I really did. It was hard to make out what anyone was saying because it was so chaotic and loud. It was downright traumatic. Yet somehow, I fell fast asleep, and that was that.
But I stayed awake long enough to see one thing very clearly: Warren, Buttigieg, Sanders, Biden, Klobuchar, Bloomberg, and Steyer -- the whole miserable bunch of them -- need to get their shit together. Or we're looking at four more years and the end of the American Dream.
I am fighting off despair.
Sunday, February 23, 2020
Nerd heaven
But nothing I'm doing can possibly compete with this video. Light, filmed at various speeds up to 10 trillion frames per second. My mind is blown. It's like seeing God.
https://youtu.be/7Ys_yKGNFRQ
Monday, February 17, 2020
In support of Michael Bloomberg.
The good itch.
Friday, February 14, 2020
Lesson in three parts.
Just_more_shit This makes me so sad and ashamed. If past me knew I would become this worthless disgusting filthy parasitic trash she would have done everything to stop it, she would have killed herself rather than let this monster free.
Wednesday, February 12, 2020
Shooting in raw.
After a shitload of research, I decided on a Canon M50, which is basically an entry-level mirrorless camera. It's smaller than a DSLR but otherwise does pretty much the same stuff. So I've been voraciously consuming YouTube videos on all things photographic (as well as videographic). And I've made a wonderful, wonderful discovery: Shooting in raw.
Oh. My. God.
I'm a little fuzzy on the details, but I guess raw files contain a lot more information than jpeg files (which I guess you can think of as regular digital pictures), so you can do a lot more in post production. In fact, you can pretty much work miracles. Plus, you get to use words like "post production," which makes you sound cooler than maybe you actually are.
Here's the picture I took (Yes, yes, I know it's just my bathroom ceiling. Whatever.):
I took the raw file, worked with it in Lightbook, and I turned it into this, which is actually what my eyes were seeing at the time I took the shot:
I mean, it's just fucking awesome, is all, and now I'm hooked.
Tuesday, February 11, 2020
The problem with self-awareness.
Wednesday, February 05, 2020
On Thirteenth Stepping.
Sunday, January 26, 2020
Monday, January 20, 2020
Old pics
Friday, January 17, 2020
The writer speaks.
Thursday, January 16, 2020
Damn, I missed it. But yay! for freedom of religion.
I got nothin'.
Wait... I might have something. ...
I was going to write about the Flying Spaghetti Monster because it's pretty awesome, but they like to think there's a stripper factory in heaven, and I find that a little problematic. That did not, however, stop me from ordering a sticker for my car, especially since the only Pastafarian dogma is that there's no dogma.
Snarky -- check.
Cynical -- check.
Now, contrary to what you might think, I do pray sometimes. I have a lot in common with religious people on the progressive left. I believe that there could be a god. I believe that the universe is sacred, and I believe if there is a conscious god, it doesn't give a shit whether you believe in it or not, as long as you do some good in the world. And by the way, I am an ordained minister with the Universal Life Church. Legal and everything. That's actually true. I can marry your sorry ass.
Respectful -- check, sort of.
Wholesome -- well, I think so.
So... whether or not you've been touched by his noodly appendage, I wish you all a belated Religious Freedom Day.
Monday, January 13, 2020
Why are autistics pissed off?
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.
Thursday, January 09, 2020
Prepare to be counted and analyzed. The Donald has found a workaround.
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.
Sunday, January 05, 2020
AA as patriarchy?
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.
Saturday, January 04, 2020
Kryptonite redux
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.