Autistic begging Sia for representation are #literally not patrons of the arts

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If performance artist Sia is autistic, she too has a right to tell her story. If a thousand volatile people want to project their feelings of job inequity, then go ahead, don’t watch the damn movie.
👉Sia has Ehlers-Danlos syndrome, and #EDS is tenfold in the #autistic population, including myself.
👉Nearly 100% of autistic people have #perfectpitch (97%, read my study). Sia’s clarity in her vocal range is very impressive to my trained ear.
👉Hiding the face with extreme costumery is a brilliant stunt to create social distance between fan chitchat, eye contact demands, and any interaction outside of the live performance.
I offer this clip where you can decide if you can spot an autistic on Ellen DeGeneres. Can you see the 🕶️ masking, the forced speech, the hand fidgets, the tight ankle cross, the scripting from lyrics, and the use of stress laughter to make conversation? How would you act if you are #autistic and are on the Ellen Show? The costume deterred Ellen from hugging and petting, which we all know is a part of live TV. Score!
The outrage by #autistics begging for “authentic representation” by way of #actuallyautistic talent is an old cry. It stems from lack of #inclusion in training programs, which I advocate for on an hourly basis.
When I was studying music therapy, I was regarded as an imposter and hacker, someone who had to be defeated. My art has been misunderstood, my talent 🎹 has been blamed on scammery, and my inclusion was blocked through denial of #accommodations. I pulled through 🎓 because I paid more attention to my goals than they gave to destroying my soul.
The arts requires stellar 🎩 representation to a storyline. Any media attention is positive attention (so go ahead and + hate me too +).
I would much rather have 25 more Rain Man movies come out this year, than none at all.
Thank you Sia for selecting seasoned and talented actress to portray the gifts and capacities, the use of #AAC typed communication (which is the law), and above all, the story of  ❤️❤️❤️INCLUSION IN THE ARTS.
Signed,
An #actuallyautistic artist who is delighted that you choose to tell your story in your unique and artful way.

Elissa Milne

Wow. Lots of people calling Henny “sweetie”.

Lots of big feelings.

Feeling outraged is a choice we’re all quite good at these days.

It takes a bit more work to actually engage with ideas, and it’s perfectly understandable that a lot of people in late November 2020 are a bit too emotionally wrung out for that kind of engagement.

This whole question is about what representation is in the performing arts.

https://www.pinterest.ph/pin/224687468885941223/Does the stage musical of the Lion King require a lion in the lead role? Is it wrong for the story of a lion to be told with a human in the role?

Is it wrong to perform Shakespeare in a historically accurate manner, with men playing all the parts?

Would it be wrong for a woman to play Richard III?

Is it wrong for an Asian opera singer to play the part of Violetta in La Traviata? And is it appropriate for any singer to take that part unless they have already died of tuberculosis?

Henny Kupferstein, Ph.D.

Here I am sitting on my fainting couch, laughing way too loudly. It’s about time we see a lion on stage!!

Elissa Milne

WE COULD GO FURTHER.

Is it wrong to depict assault on stage, if the actor is not actually assaulted?

Is it wrong to use stage craft to communicate plot points THAT ARE NOT ACTUALLY HAPPENING TO THE ACTORS?

etc etc

Representation in the community is a completely different kind of representation to what we talk about when we refer to “representation” in the performing and recorded arts.

Vocalists have all kinds of effects added to their tracks – their voices are a part of the finished “representation” that is a song on Spotify, but we’re not literally hearing that person’s voice and that alone – it’s all adjusted, treated, transformed, compressed, amplified, all kinds of things.

The product you consume in the arts is made up. It’s not a naturally occurring thing. Duh.

Henny Kupferstein, Ph.D.

The only naturally occurring thing in this post is natural selection.

Elissa Milne wins the internet. Maybe covid20 will be all the #autistics searching for tuberculosis to be authentically represented in the arts. Natural selection is naturally self evident. 

Elissa Milne

Is it wrong for an Asian opera singer to play the part of Violetta in La Traviata? I don’t think so.

Is it wrong for a woman to play Richard III? I don’t think so.

There is so much missing from an understanding of the performing arts in any take that says that the character must be portrayed by an actor with the same characteristics, it’s really hard to see a place to start with helping develop a more informed perspective.

Look at the work of Caryl Churchill (link below) for an example of creating work where distancing (in a Brechtian kind of way) is accomplished by casting characters into unexpected bodies, and where the impact is a subversion of power and a highlighting of abuses of power.

Consider theatrical traditions where roles are cast very deliberately against physical types.

The profundity of human theatrical expression that relies on the performer not being the thing being performed is immense.

Elissa Milne

Is it wrong for an Asian opera singer to play the part of Violetta in La Traviata? I don’t think so.

Is it wrong for a woman to play Richard III? I don’t think so.

There is so much missing from an understanding of the performing arts in any take that says that the character must be portrayed by an actor with the same characteristics, it’s really hard to see a place to start with helping develop a more informed perspective.

Look at the work of Caryl Churchill (link below) for an example of creating work where distancing (in a Brechtian kind of way) is accomplished by casting characters into unexpected bodies, and where the impact is a subversion of power and a highlighting of abuses of power.

Consider theatrical traditions where roles are cast very deliberately against physical types.

The profundity of human theatrical expression that relies on the performer not being the thing being performed is immense.

Henny Kupferstein, Ph.D.

Elissa Milne Even the Jews had to wear a penis prosthetic to fill the role of perfect human form for athleticism during the olympic games, because their circumcision represented mutilation or lameness.

Elissa Milne

Gosh – I’m not quite sure what to do with that information!

But now you have mentioned penises…

Hugh Sheridan musical Hedwig and the Angry Inch cancelled after outrage from transgender activists

Henny Kupferstein, Ph.D.

Elissa MilneOf course we must mention penises. A star’s show gets ‘cancelled’ (the show biz kind, not the online kind) because he is the wrong rainbow on the flag? Well, as we’ve learned from Orange is the New Black, not every Laverne has a Cox to play her pre- and post-.

#goals

Resources
  1. If you need help, try reading Karma Can Crush Creeps Autistics – AUTISTICS FTW! My Autistic Brain has at least 4 Logical Ways tot End Cyberbullying

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The Joys of Shabbos

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Henny Kupferstein as a bride, fasting and praying before the ceremony, Feb 18, 1997

Imagine if this book was an inspirational book, full of sacred references. The commentaries would guide you to a holy place. You would credit their wisdom for the feelings you experience each weekend. What if this book is a cynical anthology of anecdotes. How I was possessed by the shabbos demons. How I was released and liberated to be the queen herself. Perhaps a collection of miles which I have trekked in my journey to come face to face with shabbos herself. I had some things to tell her. You didn’t know this would be a parody on The Joy of Sex classic, or the Kosher Sex handbook by Rabbi Shmuley Boteach. Yeah, nobody told me either.

When I finally confronted the shabbos queen, she was anguished. She expressed rage as though a betrayal of a fellow sister was the worst kind. Maybe like cheating with the neighbor’s spouse in the garage. Worse than calling God by His name. I tossed and shook, like a rabid dog frothing at the final frontier of razor sharp teeth. I was armed and loaded, ready to shoot her down. 

I shot in the dark, and saw the explosion of light around my shot. The halo made me remember the days when I first lit the shabbos candles as a newly minted married woman. I had just turned 19, and I told myself these were magical flames. I would light them so earnestly, each Friday night at sundown. I convinced myself that the kindling of the candle releases my prayer to god. The blessings were personal, written just for the married woman who lights the shabbos candles. It felt so intimate, so private that I bashedly covered my eyes in emotional prayer. 

Henny Kornbluh, a chassidic bride fasting and praying before the ceremony

Henny Kornbluh, a chassidic bride fasting and praying before the ceremony.

Nobody ever told me that the tradition was from medieval times, when couples fought over saving their candles for one meal a week. When candle fat was so scarce, that weeknight meals were pure misery. After a week of hard work in the market, at the silversmith, the cobbler and the butcher, everybody wants some comforting time with the loved ones. Without a candle or a hearty meal, it was merely an extension to the week. 

Friday night was the special time. It was a time for ambience, predetermined meals to express lavishness, and a time for hot food without the hassle of preparing it fresh. They never told me that enjoyment was derived from everyone eating together, instead of a spouse slaving in the kitchen. They never warned me that he would be expected to be served as a king, while he sat on his shabbos throne beating his fist on the mahogany table covered in a $1,200 Wall of China white cotton tablecloth.

To avoid infringing on the labor prohibitions, extra precautionary provisions were added. Everyone was encouraged to bathe specifically in time for candle lighting. The nicest clothes were donned for the evening. Cooked food was kept on a low fire to keep it heated until after the evening prayers were completed. If you had any pure white articles of clothing, you were encouraged to visibly don it. Women began to wear a frilly white apron reserved for the weekend. Those who wore kerchiefs reserved the white silky ones for shabbos. 

Nobody told me that he was waiting for the shabbos ambience to get into the mood. And by mood, I mean me. They didn’t warn me that his extretions would smell like a bleach spill on Friday night, but a sardine factory by Saturday afternoon. They didn’t tell me I’d be dribbling his stewing eggs in uncontrolled flows, making me feel as though a jellyfish crawled out of me every time I stood up or shifted my weight on the couch. I didn’t realize that most hygiene rituals would be prohibited, leaving me with an unrelenting compulsion to alter my body smell and disposition. I fantasized about the day when I would use a baby wipe, and clean up. I was delighted with the wicked thought that one day, I would accidentally open the hot water faucet in the bathroom sink. Anyone hearing from outside the door wouldn’t be able to ever know my secret. The anonymity of this dreadful sin had me tickled. I planned these elaborate ideas which empowered me, and helped me see my present through the future’s liberation. 

I also smelled of his body odor. It was a mixture of Marlboro, minty breath freshener, germy teeth plaque mixed with old cheese, and aqua net hairspray on his beard. I was dumb, dumb, dumb, when I surprised him with cologne for his 30th birthday. He doused himself so extensively that weekend, that I smelled of him, his deposits, and his cologne. The horror of this sensory violation can only be described as the dollar store lavender bathroom spray mixed with the smell of a giant poo. I thought of myself as a walking port-a-potty. I felt like the blue water, a vessel accepting everything and turning all of it into a mysterious disappearing reality. I was always shit sprayed on the walls, with pee splatter for extra embellishment. 

Six years into the marriage, I finally used my words to make him hurt as much as he hurt me. After about 14 minutes of humping a wall of dry ice, he walked himself back to his bed. I shouted after him, “don’t forget to flush!”. The purple circles on his cheeks spread to his ears, and he was steaming from his nostrils. Rather than his ear sirens going off with a shriek, he screamed through clenched teeth, “How can you even say such a thing?!!!”

Nobody told me that I could say such a thing. And that it would liberate me from the pits of my hell. That I would now have permission to cry, laugh, talk to myself, or anything, but he would still get his job done without disturbing my mind. Oh how wonderful those trips were. I would fly first-class to exotic islands with turquoise seas. The mineral baths and sauna were always so exciting. I saw them opening my pores, seeping into my skin, and nourishing me with hygiene and invisible endocrine stimulants. Those dreams took me so far, that I would ride the high from my travels for a day or two. Sometimes, I even needed a vacation from my vacation. Those vacations always had me squeaky clean, and my hygiene fantasies were very fulfilling.

I hated myself so much, that I couldn’t even bother taking off my expensive shabbos house robe for naps. After the shabbos morning meal, I would pass out from exhaustion. I often slept for 2-4 hours, and it was a major boost for the week. Something in me thought that going to bed in clothes would be a signal for how exhausted I am, and that I should be left alone. I was never warned that the image of a shabbos queen in traditional clothing would fulfill his Freudian appetite and the love for a matronly figure in his own bedroom. I stopped shaving my head the day after he put his hands under my turban, feeling my peach fuzz. I knew he thought about his mother in that moment, and I was determined to discontinue that fantasy. I will not be degraded into being thought of as sex idol for a practice that was designed to downgrade me to a disgusting beast like all the abused women. 

Prisoners were shaved in Auschwitz. I knew my hair would set me free. My dreams now had me walking down the main street with my hair blowing in the breeze. I saw the smooth thick waves bouncing on my shoulder, growing long way past my face to hide my double chin. It would be as long as I wanted, and I would no longer be forced by my mother to have short bangs. I knew I owned my hair now, and I used it to regain the power I needed to survive. 

I had no idea that he would like my hair. Now he started mocking my head coverings whenever he entered the bedroom. “Take off that corny thing on your head. It makes you look so ugly.” The children would barely be asleep, and I couldn’t have any of them walk in and see me without a headcovering. It never occurred to me that they would see way more disturbing things than a mother in a ponytail. 

Women who didn’t shave their heads made it very obvious. It was a status symbol, a sign that she was more “modern” than her neighbors with a naked skull. They usually pinned the hair up in the back. We saw the giant bump in her headwear. Over time, women with ponytails finally developed a new style of headcovering so they didn’t explode inside a turban. They began to wear snoods, and it was a very hot trend. This is because the snood is merely an oversized knitted hat with a tight band for the face. Women would put up the appearance that they are casually overworked, and the frumpy style was to have the snood accidentally show some hairline. Now those ladies were the real tramps. 

When my hair first started growing back, it was thick. It was almost 15 months with horrible migraines. The short pointy ends stood straight up and hit the turban like a tight squeeze to a mophead. The competition was fierce, and the turban always won. After 7 months, the hair finally began to bend to a side, and I was able to brush a side-part. It began to stay down for the first time. It felt so exciting to have this secret growing in the privacy of my own sleep. I finally grew my hair until I could gather into a ponytail close to two years later.

I worked myself up the status to have a conspicuous ponytail bump at the back of my wig. I personally hated those mushroom heads, and vowed to never be that woman. I wasn’t. I figured out a technique for tucking my hair up and held together with giant flat barrettes. The back of my wig was snug and revealing of my true head shape. Nobody would know unless they touched my wig in the back and felt clips behind the net. He hated those clips. He always asked me to take them down and shake my head back and forth. It made me dizzy and I felt like a cow shaking off her teats after a milking. 

He was told that Shabbos was his special time with his queen. Me me me, all about his ego and his power. With every flick of a match, I silently put myself into the flaming hole of my weekend. The smell of the sulfur was a sign of my consenting acquiescence. I got sucked into the vacuum of the wick catching the flame, and I melted into the halo over the candles. I remained dazed and frozen until the thaw of the havdala candle, signaling the end of the shabbos. The havdala candle was kept in the freezer to prevent rapid dripping during the havdala ritual. How I love putting the smelling candle with a freshly burnt wick into the inviting freezer. I imagine crawling into it together with the candle, having a dark cold, silent and insulated cocoon to defrost my rage. I preferred to die from lack of oxygen, than use my oxygen to kindle him. I needed a way out. I wanted my loins back. They never asked me before they made the rules. “Oh, the shabbos queen has arrived,” he said as I lit the candles for the last time with him breathing down my neck. I was 31.

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Why I created #whinywednesday for my FaceBook followers

On Wednesday, August 21, 2019, I posted an invitation asking my FaceBook followers to post their crankiest issue of the day. The teaser introduced #whinywednesday hashtag was accompanied by a photograph of myself in a hospital setting. I replied to every comment, with a sarcastic twinge and dorky emojis and animated gifs to complete the mockery of the absurdity.

It’s #whinywednesday. Post your complaints below. I’m serious. I love being distracted 😀

Humor and sarcasm has always been my default perspective on life’s complexities. I live with genetic comorbidities known to cause complications in autistic people. As I started a new treatment this year, I found myself in the infusion clinic, surrounded by people receiving chemotherapy. The energy in the space was threatening the sanctity of my positive thoughts.

I fought back by posting a picture of my IV arm, and a goofy grin. The teaser offered an opportunity for anyone to make a laughing stock of life’s complexities, by reframing them as trivialities. The original premise was to showcase my attitude during a challenging moment, while inviting the observer to join me in silly play. I was not prepared for the awakening I experienced when reading about people’s daily grind.

Hey hey hey, it’s #whinywednesday today. So please share, what’s the crankiest ☔️ thing that happened to you today? For me, my mint plant 🥦 decided it no longer wants to live outside, so now I have green stuff in my kitchen. Okay, your turn 😀

One person shared that he just completed his oral defense for his dissertation proposal. When he got home to celebrate, he found that his brother had drank all of the scotch that he was saving for 20 years for this occasion. Others spoke about their hassle with paying their taxes, the struggle to buy printer ink at the Best-Buy, and the muscle pain of finishing physical therapy only to be followed by a gym workout.

Overall, this experiment is helping me be a better person to myself, and a more compassionate member of a community of support. Our shared interests seem to be aligned toward acceptance of autistic people, and a world that works together to create a safer space for people who are made to feel that their existence is a threat to the species. One week later, the commentators have thanked me for creating this space for safe whining. But have I created this, or have they made it what it has become? 

An Unorthodox Life: Radio interview with NPR KQED, April 25, 2017

This 30-minute episode aired through KQED to NPR two years in a row. Three years later, people still write to me about smilier stories and sharing good wishes.

Direct link: An Unorthodox Life: Radio interview with NPR KQED, April 25, 2017 (click the red play button)

Transcript

An Unorthodox Life

LISTEN

33 min

 (Deborah Svoboda/KQED)

Henny Kupferstein grew up in the Belz sect of ultra-orthodox, Hasidic Jews in Borough Park, Brooklyn. From early childhood, she felt like a misfit. After getting married to a virtual stranger at age 18, Henny began secretly rebelling against the confines of her sect. When she was 34, a startling diagnosis would lead her on a dramatic path away from the Belz and everyone she knew, including her four children.

You can read about Henny’s work with autistic kids and her book, Perfect Pitch in the Key of Autismon her website.

Music for this episode was composed by Nicholas DePrey, Chris Colin, Seth Samuel, and Henny Kupferstein.

Henny Kupferstein, age 18, with her paternal grandparents on her engagement day.
Henny Kupferstein, age 18, with her paternal grandparents on the day of her engagement. (Henny Kupferstein/KQED)
Henny Kupferstein concealed by her veil on her wedding day.
Henny Kupferstein concealed by her veil on her wedding day. (Henny Kupferstein/KQED)
Henny and her husband on their wedding day.
Henny and her husband on their wedding day. (Henny Kupferstein/KQED)
Henny Kupferstein and her four children in front of the New York Aquarium seven years ago, on the last day that she saw them. Her children were 12, 10, 5 and 15 months at the time.
Henny Kupferstein and her four children in front of the New York Aquarium seven years ago, on the last day that she saw them. Her children were 12, 10, 5 and 15 months at the time. (Henny Kupferstein/KQED)
Henny Kupferstein holding a picture of her and her four children in front of the New York Aquarium on the last day she saw them. (Deborah Svoboda/KQED)