Sophianotloren

At the beginning of the new millennium, I was writing content for a dodgy print-on-demand publisher in Manhattan’s Silicon Alley. In the first week of January, I received a call from Sophie Cottrell, who was then the publicity director of Pantheon, a venerable Random House imprint. Sophie had a debut author who’d written an epic literary novel, part of it created while living a fist-to-mouth decade in Paris. The novel was called House of Leaves and the author was Mark Z. Danielewski.

Sophie asked me if my website might want to do something that had never been done before: Did we want to do a complete online serialization of the 734-page House of Leaves before the publication date?

After our initial surprise, my company agreed. Using semi-primitive web technology, our coders in Nebraska spent hundreds of hours uploading seventy pages of House of Leaves every several days for a five-week period, up to the March 17, 2000 publication date. To prevent mass piracy, the book could only be downloaded one page at a time.

House of Leaves is a literary novel disguised as horror fiction, with an innocuous house in Virginia concealing a labyrinth that eventually consumes a film crew. Danielewski also takes the reader into the turbulent and violent life of Johnny Truant, a hero of the novel.

The online serialization caused a good media stir and some unsettling buzz in the publishing world. The difficult downloading process led to some comical moments. A book reviewer for Seattle’s alt weekly The Stranger read the whole book online and complained of blood on her keyboard.

Danielewski himself was a larger-than-life author, with high cheekbones, broad shoulders, and blue hair. Like a happy warrior, he dove into promotion. When attacked by participants in an online chat, he would give a full-throated laugh of appreciation.

After the serialization, Danielewski undertook a massive national book tour. He paired up with his rock-star sister Poe and toured with Depeche Mode, performing original House of Leaves music onstage from Poe’s album Haunted and doing spoken word from the novel. The book sold an incredible 200,000 copies in hardback.

Danielewski’s golden career continued. Only Revolutions, a fantastical history of the violence and triumph of America told in verse by two runaways driving down America’s highways in souped-up cars, was a finalist for the National Book Award in 2006. His short novel The Fifty-Year Sword hijacked the grisly campfire tale genre, putting a group of orphans in peril.

In his greatest gamble yet, Danielwski has just published The Familiar, Volume 1: One Rainy Day in May, which is the first installment of a projected twenty-seven-volume novel. At the center of the 850-page first volume is Xanther, a twelve-year-old middle school student going with her stepfather in a heavy rainstorm in Los Angeles to buy a dog. Xanther is epileptic and has been repeatedly bullied in the many schools she has attended.

Like short vignettes from a serial TV show, Danielewski cuts between about a dozen seemingly unrelated storylines: A ruthless tattooed gangbanger named Luther takes his crew on a violent mission. A police detective on the cusp of retirement named Ozgur visits several gruesome murder scenes. Cutting to Marfa, Texas, two elderly digital outlaws pursued by government agents try to protect “The Orb,” their eerie machine. An angry Armenian cab driver named Shnorhk experiences a miscarriage of justice in traffic court and then explores his people’s dark history.

Using the work of two extremely gifted artists and designers in the Atelier Z studio, the story in The Familiar and the design of the book are directly linked. A child’s deluge of questions becomes a storm of worlds that match the rainstorm outside the car window. In “The Orb” section, the type forms the shape of the mysterious machine. In a section set in Singapore, characters speak in pigeon English, with fragments of Russian and Chinese are mixed in. When Xanther runs through the rain to answer a cry for help, the words are stripped away down to the essentials, where the reader can feel Xanther’s drive, panic, and sense of purpose. The book is peppered with full-color plates of collages of letters, spacescapes, and a short graphic novel excerpt. Each section gets its own colored tab. Each storyline has its own font, for a total of 22 fonts in the book, from Baskerville to Minion.

In the storylines, Xanther’s rescue of a strange animal propels her to a new level of maturity. Luther commits his atrocious act. Ozgur visits a triple-murder scene. In the next volume, more will be revealed and developed, and more layers will be added.

I spoke with Danielewski by telephone to Los Angeles, where he lives, as the novelist prepared for the publication of The Familiar, Volume 1, and his short book tour. He spoke of why he needs to write twenty-six more volumes of his novel.

***

The Rumpus: When did the idea of a twenty-seven-volume novel come to you?

Mark Danielewski: The story that is focused on the cat, you could find old roots and examples in side projects, failed stories and things that persisted. I began working on it in full in 2005, after finishing up Only Revolutions. It’s been about nine years that I have been working on this. Only Revolutions begat its own form, the structure and the trip that Sam and Hailey were on. It was never clear until it was perfectly clear what the rules and dynamics at work were. That’s true of The Familiar. It began to create its own pacing.

There is a lot of meditation on the media I am interested in. House of Leaves remediated film and Only Revolutions remediated music. The Fifty-Year Sword does campfire stories. Television series began to play a role. It wasn’t a magical insight. You and I watched this cultural presence emerge and become pervasive. People were saying, “We are watching novels for the first time in way that film could never do. Then you have examples like The Wire, where the pacing was about character. It wasn’t about tearing up stories. It wasn’t about creating an entire story in just one episode, which was the old mode for serial books. It may be a long-running detective series, but each book contained its own mystery and its own solution, and maybe there would be an overarching villain. Then The Wire came along and showed a different kind of pace. There was a combination of an appreciation for a series like The Wire or The Sopranos, or Battlestar Galactica. It influenced my view on how this whole thing would unfold. In that sense I became more and more committed, seeing what each character could do, and what that involved with the structure itself. I think I was toying with it, how it was going to work. I think the boldness was in allowing the characters to proceed within the story as they now proceed, as you have experienced them. Certainly, you could tell the whole story in ten pages. You could accelerate it. You could have one of those shows that rapidly eat up plot points. In the devouring, you eat up all the nutrients.

I definitely call The Familiar a novel. In about two weeks, I will only have twenty-five volumes left to write. It is a specific novel. It may end up being my life’s work. As much as it contains my work, it is dominated by the personalities in it.

Rumpus: The central story in this volume is the twelve-year-old Xanther’s trip to get a dog with her stepfather. How did you develop such a heartbreakingly vulnerable character?

Danielewski: I am definitely going to be thinking about how I came up with Xanther over a vast number of volumes. What is wonderful about this novel is that it necessitated me to get out and to talk with people who were in LA gangs and to talk with parents, friends of mine. I have four godchildren, all girls. I have watched them grow up, as they head to school. I have not only heard how they speak, I also hear immediately afterwards how their parents speak about them. There is this correlation between the vast complicated obstacles that some of these children are facing, but they are not all that apparent in the way they were speaking to me. It’s about tapping into the parts of the self.

Rumpus: In an interview long ago, you told how after your parents’ divorce, your mother moved you and your sister from New York to Utah. You had this grim story of your sister dressed in a jacket painted with a Who emblem on the back getting on a school bus full of jocks and prom queens. She was like chum being thrown to the sharks. Did your experiences with bullying and being an outsider shape Xanther’s story?

Danielewski: It all comes from personal experience, but is taken beyond the personal experience to the absolute strange. Those moments gave me keynotes into those experiences. Utah was a very strange place to be a straight white male, basically exorcising me from these social bubbles. I remember the belittling, the bullying, the challenges that it brought up, and the benefits, as well. That was there. It was amazing how vital it was. That’s a question that I don’t have an answer to yet, why those moments do have a certain intensity that can burn away the intervening decades.

I have been in the same relationship for four years. When you are suddenly in a relationship that is nurturing, it is nurturing to this fragile thing that is growing, like this book. It has the potential to grow into the most beautiful thing, but needs to be stewarded through the difficult parts. Those kind of instincts, I might have been closed off to in the past. At the end of Only Revolutions, Sam and Hailey are on a mountaintop, wanting to rain the apocalypse down on everyone. There is also a hint, though, of wanting to return to a spring. I found that spring. There were some rough intervening years for me, but by coming to this place that is fragile, unexpected and open, by being willing to nurture it, this book has been made possible.

The thing about this book is the time that it is going to take to write and that no one’s time of Earth is guaranteed. It may never be more than what you’ve read so far or a little bit further. The book must continue to be fragile for years and years as it grows into being. That’s a terrifying feeling, but the only way to get through that terror is to embrace it and love it in its moment. To try to leap to the end would be to induce a phantamagoric panic that will make writing impossible.

Rumpus: Do you think writing a twenty-seven-volume novel is a dangerous career move?

Danielewski: Sure.

Rumpus: What happens if it doesn’t sell?

Danielewski: If it doesn’t sell, then it dies. This is one of those things that depends on the reader. As much as Michiko Clark [Pantheon’s publicity director] supports me, and as much as I love the people at Pantheon, this requires readers. It is too expensive to finance and takes too many human hours, if the readers don’t show up. By the time we get to Volumes 3 and 4, and there are only a few thousand readers, then it won’t continue. Like Xanther has this cat in her hands at the end of the book, the book is like the cat in people’s hands. Care, trust, love, and a protective spirit is offered. In that sense, I am terrified but also liberated.

I’ve always said that the book would be an open experience. There would be an element of the providential. Even the people in the Atelier Z are providential to a certain degree. I was desperate for an artist. Suddenly someone at a dinner party mentions that they know someone, then the next thing is that someone new is working at the Atelier. The book depends on others, where Only Revolutions didn’t. House of Leaves didn’t. House of Leaves was that self-born Paradise Lost, Satan on the side of the lake, “I will make a heaven out of hell.” This book does require others.

Rumpus. Did Atelier Z exist during The Fifty-Year Sword?

Danielewski: Yes. You could read that book in about an hour.

Rumpus: You’ve really upped your game with design on the new book.

Danielewski: I can’t disagree with you. I’m quite astonished by it.

Rumpus: Xanther has what appears to be an epileptic fit towards the end. The reader follows her as the text speeds up and rips through the pages. How does design integrate with the text?

Danielewski: It’s a big question. Particular to Xanther, over the nine years, the design changed. I was trying to settle on what would be right. The name and the look of the font is important. These changes are constantly going on. I am designing the text as I am writing. It is not like you write the text, then design it. They go hand in hand. When these moments accelerate, there is less text on the page. The meanings have to be more concentrated. You can be more verb heavy in terms of action, or you can be more poetic. There are times when I changed the font and that radically affected the number of words on the page, and that changed everything and suddenly her voice changed. There is a lot of that. She hears this cat through the three pink ellipses. One of the parts that always gets me about Xanther is the thought of writing twenty-seven volumes with her at the center is that this is the greatest privilege that I can imagine. I will be so lucky if I get to do this. All the characters in the book hear the cat, but she’s the one that answers and leaps from the car, and she goes to get it. All of the other characters are chosen, but she’s the one that answers. That’s the heart of the book for the writer and the reader. Do you answer the call?

Rumpus: In multiple books, you seem to have a keen interest in children in peril. There is the horribly abused Johnny Truant in House of Leaves, and the orphans endangered by the storyteller in The Fifty-Year Sword. Now, there is Xanther, who has a bleak future ahead. Do you see a trend in your writing?

Danielewski: Sure. It’s a point, a nexus, where the literal and historic, prophetic and prescriptive and the symbolic combine. Yes, we are talking about a child, but we have these young ideas at all ages, that if nurtured and cared for, can go up to bigger and better things. They may be as significant as a little impulse that a fifty-year-old woman has been holding on to, that she can nurture, and suddenly become this little gleam ten years later, and change her life in a way that is inspiring for everyone. Through a lot of practice of my own, whether it is physical practice like tai chi or yoga, it is this constant place of finding newness and beginnerness. A child is emblematic of that. It is a time when we are formed by powerful ideas and may be prejudiced by these ideas. From an early age, we are prejudicially slotted to a certain viewpoint. We always have an opportunity to engender a different viewpoint, yet it is very easy not to. It is this point when habits that start to reinforce bad things as well as good things have not quite formed or set, and there is an openness. There is such a vitality. At the same time, there is an age in The Familiar… it is very difficult for me to see the book as you see the book, for so much more of it is in place in my head, which I know is not in Volume I.

Rumpus: In terms of your working style, do you already know what happens in V. 22 and V. 27?

Danielewski: Yes. I absolutely know the ending and I am confident that the ending will be entirely different by the time that I get there. It is in place. There are stories that will be developed in much greater detail, like [the Armenian cab driver] Shnorhk and the [hardboiled LAPD detective] Ozgur, so there is this element of age, of older characters, as well, and to their own awakening and changing. Ozgur is coming around… he has a lot of balls in the air.

Rumpus: Each chapter had its own ember of violence, from Luther the gangbanger to Ozgur’s grisly murder scenes, to Xanther’s violent abrupt and dangerous epileptic fits. Did you intend this much violence or did it just happen?

Danielewski: The whole book did happen in one way, the moment of just writing it from nowhere. Then the book didn’t just happen, because there was a revisiting of the different sections. Your concern about the violence is right. There is a fear of violence, there is some experience with violence, the inherited stories of violence in my father having survived World War II. There is the maddening energy of violence. It’s a good point. There is violence and more violence coming.

Violence is a compressed moment that is shocking and abrupt and out of the ordinary in its comprehension, even though it speaks to something inevitable. That’s part of the literary argument, the compression of things, what is always so bewildering about time’s passage, about violence where time is accelerated, that it goes beyond our control.

Rumpus: Did you do extensive research to create Luther and his crew?

Danielewski: A lot of it is providential introductions to people. I’ve ended that cloistered, monastic part of my life as a writer, and I want to be much more open to the variables of change, and that took a lot more doing. I had to change aspects of my personality, further amplified by the examples of Salinger and Pynchon. Suddenly I said, “Let’s open the doors, let’s open the windows here.” That began to take place with The Fifty-Year Sword. I depended on other people and that led to introductions. It required personal openness that was very hard for me. I could be at a barbecue and start talking to someone. For some reason, this guy opened up to me about life in “La Pinta” [the LA Mexican gangs] and in jail. That led into Luther’s world. A lot of the taxi cab drivers in LA are Armenian. Suddenly, I was talking to them and having great conversations. You have this horrendous English, but through it you get these tremendous stories of the Armenian genocide, which was being echoed now. It is also about not getting confused by the small things, but focusing on the larger issues, the blunt subject of each chapter.

Rumpus: Some story threads in The Familiar V. 1 end abruptly. I thought they may be red herrings and dead ends. With twenty-six volumes to go, do you anticipate developing the shorter stories like the cancer-ridden cowboy or the elderly fugitive couple in Marfa, Texas, traveling with a mysterious machine called “The Orb” ?

Danielewski: Yep. The other thing is being open… I can anticipate this happening that for the first time, there will be reader feedback. As readers are drawn in and become more curious about things, these things may become amplified by the suggestions that may come. It will be much more open, but there will be times when I say, “That’s not going to happen.” There is something else that can happen, the introduction of ideas. One person who was helping me with the Armenian section opened up with a series of stories that she didn’t even think were germane to the book. They introduced me to a different set of literatures, which will influence what Shnorhk is dealing with in the novel.

Rumpus: Was it difficult to write the terrifying scene where Xanther bursts out of her stepfather’s car, into a blinding rainstorm?

Danielewski: It was. In some ways, it is the heart of the book. It was the heart of the last nine years of writing. It was the inevitable part that she was going to find something. The incredible velocity when you are finding something or losing something, the sense of elation that gives you purpose, that can drive Xanther through her run. I wonder if what readers are responding to, which is in the book, is the sense of loss that the parents feel they are losing her. They also understand that she is changing, that she is growing up, that there is an underlying tension that their daughter is starting to become who she is in a way they can’t control. This moment is literalized. Anwar experiences not only losing her, but for a moment is unaware of her leaving the car, because he is focused on the rain, the traffic and where they are going. Xanther is not losing Anwar. There is no point where she is thinking of him. Xanther is thinking of the purpose that she can hold on to through everything that will come at her. She’s just ahead of everything that will ask of her to fail. There is the reprieve that she grants to something that is voiceless and unknown. It is very moving. I feel those seizures of information that Xanther has. For me, it is the most effective part of the book. I am gratified by the early response of readers. I was moved writing it.

In this scene, Xanther is not prey to the usual television adversaries. It’s the rain, it’s the distance. It’s the peculiar calling of an unspecified thing that alters the relationship. It has a profound effect on the family in later volumes.

Rumpus: It’s been fifteen years since House of Leaves. For that book you toured extensively through bookstores throughout the country, as well as doing a tour with Depeche Mode and your sister Poe, where you performed onstage. For this book, you are doing a Middle American tour of four cities—Athens, Georgia; Tulsa, Oklahoma; Fort Collins, Colorado, and Portland, Oregon. Why this change of pace?

Danielewski: It is what I want to do. It is the book, like the cat, like Xanther, will survive because of Xanther, the book and the cat. There is not the time to do that extensive tour. It’s about pacing. Talking with my publisher, if we are publishing two or three volumes a year, I don’t have the time to take a month off to tour for each volume. It’s impossible. We settled on one week of touring. We are doing a limited amount of press, six to nine interviews. The idea is not to repeat the same cities. Over twenty-seven volumes, it may end up being the most expansive touring I have ever done, since touring with Depeche Mode and my sister.

We are not going to do New York and LA every single time. Spread it out… a few big cities and a few small cities. If the book does well, it will be more of a big event for the New York bookstores in later volumes. They are going to get a lot more people, which is always better for their business. It will be more of a good time. Ultimately, I want everyone to have a good time.

We did so many cities for House of Leaves, with Depeche Mode, then the Borders Bookstore tour. Then there were tours that Sophie [Cottrell, his old publicist] kept adding. You almost become an act.

The Familiar says everything. It took nine years to write and it probably takes about ten to twelve hours to read. It probably took you twice as long to read the first half of the book as it took you to read the second half. That’s part of the impact of the scene with Xanther in the rain—you know it’s going to speed things up. It’s craft. It’s plotted like her thinking. You’ve learned how to read her. You’ve been taught how to read her with the rising rainstorms, and finally she has the moment when she frees herself from that.

Rumpus: Fifteen years ago, on your extensive book tour, you made a point if inscribing artwork in the audience members’ books, and then stayed out late drinking beer with the bookstore staff. Did this help sell books?

Danielewski: I would interact with both the audience and the staff. That was taught to me by Sophie Cottrell. I read at Elliot Bay Book Company in Seattle and only four people showed up, and two of them were homeless. One of the people walked out during the reading and it wasn’t a homeless person. Sophie told me I was selling a lot of books. I had hung out with all the booksellers, who I loved, and they were selling my books over the week.

Rumpus: Why does every appearance of the word “familiar” show up in the color pink?

Danielewski: That is one question that I am just not going to answer. That’s like asking why “house” in House of Leaves always shows up in blue. The reasoning behind this is all rather extensive. I defer to the moment ahead where you have your “A-ha” moment.

Rumpus: Xanther’s natural father is Dov, a soldier who died a heroic death in Afghanistan. What interested you in giving Xanther a ghost father?

Danielewski: Good question. Lots of reasons, but that is in the category of “Why pink for ‘familiar’?” You are landing on important things.

Rumpus: Why do you frame most of the action in the book as literally taking place during a torrential rainstorm in that drought-stricken city of Los Angeles?

Danielewski: Part of it’s true. We are in the middle of a drought and suddenly the rain just drops from the sky. It feels like there is enough water forever, but there isn’t. The streets are like rivers. You see garbage cans swept away. The book is a love song to Los Angeles, way beyond what people associate with Los Angeles, its media persona.

As you work the material, it begins to give suddenly. “What’s a rainstorm?” There are cinematic instincts. You are looking at Xanther’s seizures and you can take it so far with the language that Xanther incorporates. Ultimately, for Xanther, the rainstorm moves into a visual representation of the sudden crash of many thoughts.

There was this moment in writing when I realized that every character was in the rain. If Kubrick was the patron saint of House of Leaves, Akira Kurasawa was sort of the patron saint of The Familiar.

***

Drawing © Mark Danielewski.

Related Posts:

• The Rumpus Interview with Sean Michaels
• The Rumpus Interview with Joshua Davis
• The Rumpus Interview with Susan Minot
• The Rumpus Interview with Edan Lepucki
• The Rumpus Interview with Shulem Deen

Important news to start your day: you’re pooping wrong.

Here’s some Japanese falconry woodblocks for you.

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Mat Collishaw, “All Things Fall” (screenshot by the author via Vimeo)

In a colossal carousel of horror, British artist Mat Collishaw and designer Sebastian Burdon reinterpreted the chaotic violence of Peter Paul Rubens’s 17th-century “Massacre of the Innocents” paintings as a 3D-printed zoetrope. The kinetic sculpture called “All Things Fall” was unveiled last October in Collishaw’s Black Mirror exhibition at Galleria Borghese in Rome, and recently Burdon shared the sculpture in action on Vimeo.

According to Burdon, it “took about six months of work and involved creating over 350 character figures, environment elements and architecture.” Burdon has collaborated with Collishaw on giant zoetropes before, such as “The Garden of Unearthly Delights” with 200 figures inspired by the creepy mayhem of Victorian fairy paintings, shown at MAD Museum in 2011. The zoetrope, also something of a Victorian fascination after their contemporary cylinder shape was designed in the 1830s by William George Horner, is basically a sequence of spinning images that appear animated when turned.

Mat Collishaw, “All Things Fall” (GIF by the author via Vimeo)

The precision of 3D printing for designing zoetropes has been inspiring projects like John Edmark’s sculptures that appear kinetic when spun or placed under a strobe light, and other artists have experimented with the unsettling effect of the jerky zoetrope, such as Gregory Barsamian‘s surreal synchronized sculptures. “All Things Fall” is exceptionally disturbing since Rubens based his two paintings on the biblical Massacre of the Innocents, where Herod orders the mass murder of babies when he heard news of the birth of a future king (outside of the Gospel of Matthew, this incident appears to have no historical truth).

In the Rubens, your eye flits from one grotesque scene to the next, babies flying this way and that. In the zoetrope, soldiers fight with mothers for their infants, and men toss babies out of windows in a loop. As a 3D printed sculpture, it lacks some of the finesse of the original Flemish Baroque, which was able to get by with the brutal chaos through beautiful brushwork. The zoetrope just reduces it to its violence over and over again, but it is creepily mesmerizing with its endless macabre turns.

Peter Paul Rubens, “The Massacre of the Innocents” (1611-12), oil on oak (via Art Gallery of Ontario)

Peter Paul Rubens, “The Massacre of the Innocents” (1638), oil on oak (via Alte Pinakothek, Munich)

h/t Stash

Yesterday’s bill in Los Angeles to ease in a $15 minimum wage is great. But it isn’t enough to live on in Los Angeles because housing is so expensive. A $15 minimum wage really just needs to be a first step in the larger fight for living wages for working people.

Larry Achiampong and David Blandy’s ‘Media Minerals’ at DOLPH, London (all photos by the author for Hyperallergic)

LONDON — How do you tell a story that does not want to be told?

Artists Larry Achiampong and David Blandy address this question in Media Minerals at South London’s project space DOLPH. Indeed, the story the two artists tell is not an easy one: the history of postcolonialism and its influences on the artists’ own lives.

The exhibition features objects, music, photos, props, and other source material used in Achiampong and Blandy’s HD video Finding Fanon (2015), the first segment of a yet-to-be-released work inspired by Frantz Fanon (1925–1961), a Martinique-born intellectual who studied the psychopathology of colonization and the social consequences of decolonization.

Achiampong and Blandy’s influences for Finding Fanon are vast: from global politics and sociology to hip-hop music, science fiction, comics, and trash TV. The artists organize these materials in the form of a concept board, displayed on two walls, associating key words such as “home,” “me,” and “happiness” with personal photographs, images from magazines, and reproductions of artworks and illustrations related to the history of colonialism. These associations, personally meaningful to the artists, speak a great deal about identity and colonialism — the word “mother” leads to a portrait of American author Maya Angelou, some photographs of the artists’ own mothers, and a picture of “Women of Algiers” (1834) by French painter Eugène Delacroix. Here the idea of maternity is cleverly put in relation to the feminine, exotic imagery painted by Delacroix, casting the shadow of colonialism on Western culture.

Larry Achiampong and David Blandy, ‘Media Minerals,’ exhibition view

The specter of racism, experienced from different perspectives, haunts both artists’ stories. Blandy’s grandfather taught British agricultural methods in Kenya, building a pineapple industry — a plant indigenous to South America that is featured in the exhibition as a bittersweet symbol of postcolonial politics and economic interests. As it is explained further in the script of Finding Fanon, reproduced in full at the exhibit, the growing of the fruit was a way for the British government to retain control over the local population in the 1950s and ’60s:

These pineapples would then be canned in huge factories and shipped to England. This agricultural programme, funded by the UK government, aimed to stabilize a conservative native middle class, and confirm the Mau Mau rebels as landless, in a last ditch effort to retain Kenya as a colony.

While Blandy’s grandfather did, in a way, participate in British colonialism, Achiampong’s uncle — some 40 years later — was placed in a British immigration detention center when he arrived in the UK in the early 1980s, experiencing the humiliation of being an immigrant — a trauma that the artist feels to be at the heart of his family.

Media Minerals also features a montage of the movies that inspired the artists in their creation of Finding Fanon. The montage, which mixes references like the collage-like concept board, includes footage from Spike Lee’s Bamboozled, a scene from the ’70s conspiracy thriller Parallax View, and the voiceovers of Chris Maker’s La Jetée and Sans Soleil. These multiple references work as a collection of media samples, taken from the artists’ personal histories and from our collective memory.

Larry Achiampong and David Blandy, ‘Media Minerals,’ exhibition view

Media Minerals takes topics that we might perceive as outdated and shows that they aren’t at all distant, implying the need to face unsolved issues still coming from a relatively recent colonial past. Achiampong and Blandy’s story is an open conversation: their work suggests that we all are, in one way or in the other, linked to a colonial past. The exhibition highlights the fact that history is not only made by major events, but also by the small, private memories shared by everyone. In this sense the public is invited to participate in the telling of Achiampong and Blandy’s story, because the postcolonial reality and its consequences concern us all.

Larry Achiampong & David Blandy: Media Minerals continues at DOLPH (47c Streatham Hill, Streatham, London) through May 23.

Jeb Bush Says His Brother Was Misled Into War by Faulty Intelligence. That's Not What Happened.

He and other Republican presidential contenders have a new and bogus spin on how the Iraq War began.

“Saddam chose to deny inspectors”

Bush repeated this bald-faced lie recently. The cowering press still lets him get away with it, but the public is no longer fooled.

Slowly but inexorably, as more and more information emerges, the conventional wisdom about the events leading to war in Iraq is shifting. The American public has joined the rest of the civilized world in questioning the arguments and motives of the war makers. Commentators who have habitually fashioned excuses for the White House seem to find that task increasingly burdensome and humiliating. The old lies no longer have much traction.

Yet even now, President Bush persists in blatantly falsifying the war’s origins — perhaps because, even now, he still gets away with it.

At his most recent press conference, that strange impulse to utter a ridiculous lie seemed to seize the president. It happened when he called on Hearst columnist Helen Thomas.

“I’d like to ask you, Mr. President, your decision to invade Iraq has caused the deaths of thousands of Americans and Iraqis, wounds of Americans and Iraqis for a lifetime,” said the venerable correspondent in her confrontational style. “Every reason given, publicly at least, has turned out not to be true. My question is, why did you really want to go to war?”

Bush responded by denying that he wanted war, a pro forma assertion that nobody believes. He blathered on for a while about Sept. 11, the Taliban, al-Qaida and protecting America from terrorism.

And when Thomas reminded him that she had asked about Iraq, he said, “I also saw a threat in Iraq. I was hoping to solve this problem diplomatically. That’s why I went to the [United Nations] Security Council; that’s why it was important to pass [Resolution] 1441, which was unanimously passed. And the world said, disarm, disclose, or face serious consequences — and therefore, we worked with the world, we worked to make sure that Saddam Hussein heard the message of the world. And when he chose to deny inspectors, when he chose not to disclose [emphasis added], then I had the difficult decision to make to remove him. And we did, and the world is safer for it.”

The official transcript notes “laughter” at that moment.

What was so funny? Were her colleagues laughing at Thomas, whose monopoly on testicular fortitude has shamed them all for so long? In the days that followed, the bully boys of the right-wing media enthusiastically abused Thomas, which was predictable enough. But have the rest of the reporters in the press room become so accustomed to presidential prevarication that they literally cannot hear a stunning falsehood that is repeated over and over again?

For the third time since the war began three years ago, Bush had falsely claimed that Saddam refused the U.N. weapons inspections mandated by the Security Council. For the third time, he had denied a reality witnessed by the entire world during the four months when those inspectors, under the direction of Hans Blix, traveled Iraq searching fruitlessly for weapons of mass destruction that, as we now know for certain, were not there.

...

Hovertext: I think, therefore... wait... do I think? Why do I think that?

 SUBMISSIONS ARE OPEN FOR BAHFEST(s) 2015!

The Doubleclicks are awesome! For a spoiler, check out their video.

moshita:

Sculptural Vesselware

Andy Paiko Glass

“The Keepsake: A Gift for the Holidays” (New York: J.C. Riker, 1853) (via Library Company Conservation Dept.)

For a few years in the 19th century, books bound in covers glistening with mother-of-pearl were a gift-giving sensation. Victorians were enamored of papier-mâché, that easily shaped paper pulp medium, and used it for snuff boxes, furniture, and even pre-fabricated housing. Mostly made in New York, papier-mâché books adorned with mother-of-pearl were part of a gift book fad, wherein a decorative tome of sentimental or religious poetry was bestowed upon a loved one, often around the winter holidays. The text was usually secondary to the gaudy cover, which was decorated to the extreme.

Undated portfolio cover (via Library Company Conservation Dept.) (click to enlarge)

The Library Company of Philadelphia has a thorough online database of 19th-century book bindings (which we heard about through a blog post from the Alcuin Society, a Canadian nonprofit for the “appreciation of beautifully produced books”). With almost 50 papier-mâché examples and eight portfolio covers, it’s one of the world’s best of such collections. Ornate bookbinding was hardly uncommon in the Victorian age, such as these beautifully embossed natural history books, and papier-mâché isn’t even close to the strangest style — this was, after all, the same century that saw books bound in human skin. But the mother-of-pearl embellishments, made from mollusk shells, represent an intriguing moment in decorative arts, a peak in bookbinding popularity, from which the practice would go on to slump like so much wet paper.

The Library Company notes that the bindings “appeared on American books only briefly — around 1850-55 — a time of increasingly elaborate book cover decoration.” The use of inlaid shell on books wasn’t new; tortoise-shell bookbinding existed in the 17th century, for example. However, the mother-of-pearl details on the papier-mâché bindings brought this shining, some may say garish, elegance to the consumer market.

Many of these examples are embedded with iridescent flowers; others have mother-of-pearl accenting pastoral vistas, echoing the popular romance of nature at the time. Oddly, nautical scenes doesn’t seem to have been too common, perhaps to avoid reminding viewers of the slimy invertebrates that once resided in the beautiful shells. While there hasn’t been a significant amount of research on this moment in publishing, Jennifer W. Rosner, chief of conservation at the Library Company of Philadelphia, did publish a 2013 essay on these book bindings in Suave Mechanicals: Essays in the History of Bookbinding, Volume 1.

Below are some selections from the Library Company of Philadelphia’s collection of papier-mâché book bindings, many donated by rare book collector Michael Zinman. More can be found on Flickr.

“The Keepsake” (New York: Riker, 1851) (via Library Company Conservation Dept.)

“The Christian Keepsake: A gift book for all seasons” (New York, published by Leavitt & Allen, 1855) (via Library Company Conservation Dept.)

“Leaflets of Memory” (New York: Leavitt & Allen, 1856) (via Library Company Conservation Dept.)

Cover of a book inlaid with mother-of-pearl (via Library Company Conservation Dept.)

“The Women of Early Christianity” (New York: D. Appleton & Company, 1852) (via Library Company Conservation Dept.)

“The Keepsake: A Gift for the Holidays” (New York: John Riker, 1852) (via Library Company Conservation Dept.)

“Friendship’s Token” (New York: Leavitt & Allen, [n.d.]) (via Library Company Conservation Dept.)

“The Emblem: A Gift for All Seasons” (New York: Leavitt & Allen, [n.d.]) (via Library Company Conservation Dept.)

“The Keepsake: A Gift for the Holidays” (New York: John Riker, 1852) (via Library Company Conservation Dept.)

penicillium-pusher:

“girls only wear makeup and dress nice for guys!”

false. 

The Los Angeles City Council voting 14-1 to increase the city’s minimum wage to $15 an hour is a very big deal. Doing this city by city or state by state is not ideal. But given the broken government at the federal level, it’s the best option we have now and could transform minimum wages around the state of California and beyond. A major victory for workers.

Personally, I look forward to the Fight for $20.

By Sean Waite and Nicole Denier

Over the last two decades there has been a growing interest in the labor market outcomes of gay men and lesbians. It has long been acknowledged that labor markets are stratified along multiple dimensions, such as gender, race and nativity. More recently new data has shed light on how labor market opportunities and rewards may also differ by sexual orientation. So far research has generally found that gay men earn less than straight men and lesbians earn more than straight women (in our work we show that this still means earning less than all men).

In most cases wage differences cannot be explained by differences in individual characteristics or choices, like weeks and hours worked, socio-demographic factors, education, and occupation or industry of employment. Researchers often interpret any wage gap that remains after accounting for these characteristics as discrimination. In other words, it is argued that employers and customers have a preference working with or doing business with straight men, rather than gay men. The wage advantage for lesbians relative to straight women is commonly interpreted as positive discrimination, i.e. since lesbians are less likely to be married and have fewer children, employers perceive them as more committed and less encumbered by family responsibilities than straight women. Taken another way, lesbians may experience less discrimination than straight women because they are perceived to be less encumbered by family and childcare responsibilities. But research so far has been limited by two big things. First, many data collection agencies don’t ask about sexual orientation in surveys (a great summary of this issue can be found on the Family Inequality blog), and if/when they do, it is often not asked in the context of questions about work situation. Second, research often focuses on one particular source of pay differences at a time, making it hard to evaluate the major factors driving wage inequality for gay men and lesbians.

Using Canadian Census data, we explore how various mechanisms contribute to wage gaps between gay men and straight men and lesbians and straight women, focusing on areas that researchers have identified as key determinants of how much people earn, including a 1) education and weeks/hours worked, 2) occupation and industry of employment, 3) sector of employment, and 4) family situation.

Canada is a particularly interesting case for studying the labor market experiences of gay men and lesbians. In 2003 Canadian provinces began recognizing same-sex marriage, culminating in the federal legalization of same-sex marriage on July 20, 2005–making Canada the fourth country in the world to federally legalize same-sex marriage. Ten years earlier the Supreme Court of Canada maintained that sexual orientation was subject to coverage under federal anti-discrimination laws outlined in the Canadian Charter of Rights and Freedoms. In addition to federal protections, all provincial human rights charters and laws prohibit discrimination based on sexual orientation in private housing and labor markets. As a result of this legal setting, the 2006 Census of Canada provides data on married and cohabiting same-sex couples across the nation–one of the first in the world to do so. Statistics Canada also went to considerable lengths to ensure that same-sex couples were correctly counted in the 2006 census. For instance, the Canadian Census asks respondents directly if they are in a same-sex common-law relationship. This is an improvement over US census data where researchers must infer a conjugal relationship between same-sex adults in a household.

Our most conservative estimates find a ranking of labor market outcomes by sexual orientation in Canada, such that straight men earn more than gay men, followed by lesbians and straight women (See Figure 1 below). These conservative estimates account for education, weeks/hours worked, occupation and industry of employment, and family situation. Source: 2006 Census of Canada. Note: Estimated using ordinary least squares regression. Sample includes non-visible minority, native-born employees with annual earnings above $1,000, and in married or common-law relationships. All wage gaps statistically significant at *** P ≤ .001.

What do the different mechanisms tell us about the sources of gay pay gaps? High levels of educational attainment lead to employment in lucrative occupations for sexual minorities, but within these occupations gay men and lesbians earn significantly less than straight men. Wage gaps are reduced in the public sector for straight women, gay men, and lesbians, indicating that the highest gay pay gaps are found in private sector jobs. Finally, we find that straight women experience a motherhood penalty, straight men experience a fatherhood premium, and both receive a premium for marriage; however, the presence of children and marriage have no effect on the earnings of either gay men or lesbians in conjugal relationships.

Although Canada has a long history of employment protections and a high level of acceptance for sexual minorities, labor markets are stratified by sexual orientation. Gay men in Canada appear to make choices to improve their economic fortunes, such as investing in high levels of education and working in high paying occupations; however, it is within these occupations that gay men earn less. For lesbians, investments in higher education, sorting into higher paying occupations, industries and working more hours per week play a significant role in their wage advantage, relative to straight women. A smaller, although not insignificant, portion arises from differences in returns to these characteristics for lesbians. This study has answered many important questions regarding labor market stratification by sexual orientation in Canada; however, many questions remain. Research on the economic lives of gay men and lesbians continues to offer an exciting and pressing arena for future research.

Sean Waite is a PhD candidate in sociology and graduate trainee at the Centre on Population Dynamics at McGill University. For information on his research, please click here. Nicole Denier is a PhD candidate in sociology and graduate trainee at the Centre on Population Dynamics at McGill University. For more information about her current research click here. Their co-authored article, “Gay Pay For Straight Work: Mechanisms Generating Disadvantage,” is available through Online First here. To view the article press release, click here and here.

J. S. Johnston, Bethesda Terrace at Central Park (1894) (via Thomas Warren Sears photograph collection, Archives of American Gardens)

In thousands of recently digitized glass plate negatives, the natural and landscaped grandeur of gardens past is revealed in freshly sharp detail. The Thomas Warren Sears Archives of American Gardens, named for landscape architect and photographer Thomas Warren Sears, at the Smithsonian Gardens includes over 4,600 glass lantern slides from 1900 to 1966. Documenting gardens both private and public around the United States and in Europe, there are several images that reveal the 19th-century experience of visiting New York’s Central Park.

A few decades after Central Park’s opening in 1857, the park scenes shown below capture well-coiffed patrons strolling the Bethesda Terrace with its angel sculpted by Emma Stebbins in the central fountain, and lounging in the adjacent mall in their top hats and feathered bonnets. The new scans are often over 20MB jpgs (and 140MB tifs), so you can really zoom in close to the finer black and white details. Smithsonian Digitization demonstrated the difference with the new scans in a Tweet, with the old online version above and the new below:

Amazing detail in this newly digitized glass plate negative from @SIGardens, at http://t.co/ujIsDPgnEw pic.twitter.com/BBRSp123iy

— SI Digitization (@SIxDIGI) February 24, 2015

Over 3,000 of the Thomas W. Sears plates were digitized in just nine days, part of the Smithsonian Institution’s new speedy program for putting collections online. According to a January article in Smithsonian Magazine, an effort to digitize 137 million objects across the institution includes a “rapid capture” process involving a conveyor belt and 80 megapixel imaging system. It was first in full-production for the currency in the collections of the National Museum of American History. Digitization program officer Ken Rahaim told the Washington Post that in 2013, the Smithsonian Gardens glass plates were part of a pilot project involving flatbed scanners with a camera.

The online images flying out of the Smithsonian encompass everything from 40,000 Asian artworks at the Freer Gallery of Art and Arthur M. Sackler Gallery to 40,000 bumble bees at the National Museum of Natural History. The consistent quality and increased availability is an impressive model for bringing other museum collections online. Items like the Thomas W. Sears garden glass plates aren’t the type of objects to often be on display with their delicate medium and incredibly specific focus, and especially not in their complete number. But now through the online archives you can promenade through parks, gardens, and private natural oases of yore at your digital leisure.

J. S. Johnston, Bethesda Terrace at Central Park (1894) (via Thomas Warren Sears photograph collection, Archives of American Gardens)

S. J. Johnston, “The Mall” in Central Park (1894) (via Thomas Warren Sears photograph collection, Archives of American Gardens)

Central Park slide (via Thomas Warren Sears photograph collection, Archives of American Gardens)

Central Park boating (1903) (via Thomas Warren Sears photograph collection, Archives of American Gardens)

J. S. Johnston, Bethesda Terrace at Central Park (1894) (via Thomas Warren Sears photograph collection, Archives of American Gardens)

J. S. Johnston, Bethesda Terrace at Central Park (1894) (via Thomas Warren Sears photograph collection, Archives of American Gardens)

Central Park slide (via Thomas Warren Sears photograph collection, Archives of American Gardens)

Central Park slide (via Thomas Warren Sears photograph collection, Archives of American Gardens)

Central Park slide (via Thomas Warren Sears photograph collection, Archives of American Gardens)

View more images from the Thomas Warren Sears Archives of American Gardens online at the Smithsonian Institution. 

The Trans Pacific Partnership is likely to be as disastrous on environmental issues as it is for labor and intellectual freedom.

In order to avoid dangerous climate change, scientists estimate that 80 percent of the world’s fossil fuels need to remain in the ground. But coal, natural gas, and oil left in the ground means profits left on the table for fossil fuel companies. And under the proposed Trans-Pacific Partnership (TPP), corporations will likely be able to sue governments that interfere with their business — even if it’s by enacting carbon reduction goals and passing environmental legislation.

“Creating a corporate bill of rights to protect investors is incredibly undermining to our ability to protect the environment,” Ben Schreiber, the climate and energy program director for Friends of the Earth, told ThinkProgress.

Previous trade deals have, in fact, led to lawsuits over fossil fuels. An American mining company, Lone Pine Resources, sued the Canadian province of Quebec in 2013 for passing a ban on fracking. The company says the ban cost them $250 million and that under the North American Free Trade Agreement (NAFTA), Quebec is liable for the lost revenue. That lawsuit is ongoing.

In another lawsuit, Chevron alleged that Ecuadorian activists had defrauded the company, after it was ordered to pay $18.2 billion in damages for environmental contamination.

What’s the moral to this story? Two morals: One, the Internet is awesome because, sometimes, if you ask, you will get pictures of squirrels playing polo on the backs of Pomeranians. And two:

But mostly: Squirrels on Pomeranians, playing polo.

Update: 1:48pm: The opposing team has now taken the field:

What a glorious day for Squirrel Polo.

Update, 5pm:

And now we have a league!

redditfront:

That awkward moment when Satan is a perfectly acceptable option for your kids

There is a popular new trend amongst Facebook users where people click that they are attending events they have no intention of going to in order to raise awareness of certain events or individuals. This practice has had some positive outcomes, Californian student Azeem Ward received Internet fame following the sharing of his flute recital, with thousands pledging to attend the event only intended for one hundred.

Unfortunately, like everything else on the Internet there is a darker side to this new trend. When thousands of Internet users, mostly white men, clicked to attend an even in Claifornia for Black Lesbians United, the group was quickly over run by racist and homophobic abuse.

The group were subjected to comments such as people asking if they can attend because they ‘know a black guy’ and offering to ‘bring the KFC’. Some Facebook users posted links to hardcore lesbian porn, whilst one individual commented ‘I’m a straight whit boy having ambitions to one day be a black lesbian.’

Following the massive amounts of abuse the group were subjected to they chose to remove the events page from Facebook, though the event itself is still planned to go ahead.

To be honest though, I’m not shocked that the group were subjected to this kind of abuse, we all know that there are a lot of very nasty and very narrow minded people on the Internet, and social media especially. What does shock me though is that once again Facebook is allowing people to get away with posting abuse of this level.

There are so many people and pages being reported every single day for spreading hate speech and abusing other Facebook users that you’d think the company would be quicker to step in when situations like this occur. Facebook needs to address these kinds of issues. They need to employ more people to stop this kind of thing from happening and they need to shut down the accounts of users that engage in these kinds of acts, not waiting for the victims to leave because they can’t take anymore abuse.

Fortunately not ever person who left comments on the Black Lesbians United page was there to cause harm. One commenter wrote, ‘To the black lesbians who only came to this page to find happiness and acceptance in their sexuality I want to give a sincere apology for the twisted sick people who have written racist or homophobic comments to you.

‘Nobody deserves to be treated that way, no matter how fucking funny those idiots think they are. Keep being proud of who you are and don’t listen to the insecure people below. One again I am truly sorry.’

Amy.

xx

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The post Facebook Group For Black Lesbians Forced To Shut Down AFter Racist and Homophobic Abuse appeared first on Planet Transgender.

sandandglass:

’Indiana Jones’ Reboot Starring Anna Kendrick

Sandy Rios is one of those apologists who thinks the motorcycle gangs are no big deal, and easily "retrainable" into some kind of fighting machine to unleash on the likes of "drug cartels and Islamists."

After nine people died in Waco, Texas, during a fight yesterday between rival motorcycle gangs, American Family Association governmental affairs director Sandy Rios noted on her radio show today the “senseless” violence and waste of life.

Instead of letting them fight each other, Rios said, the U.S. government could have just used these gang members to fight drug cartels and Islamists.“Police have their hands full fighting our real enemies, the cartels, the Islamists, and now they’re fighting motorcycle gangs?” Rios asked. “I find myself thinking, let’s have a little retraining for motorcycle gangs and put them on our side fighting our enemies. That’s what we really need.”'

Listen:

Note the veiled racism in her statement about who our "real enemies" are? She left off the reference to "Mexicans" in the drug cartel reference, and black people in the Islamist reference.

read more

(Warning for those who need it: discussion of rape scenes in storytelling)

So, many years ago, when I was still a very young writer, I made the acquaintance of Pamela Wallace, and she and I became friends. At the time I was a film critic, and she was a screenwriter — and not just a screenwriter, but one who had won an Oscar, for her work on Witness. She also wrote novels, which were at the time something I was thinking about doing at some point. So she and I talked a lot about movies and stories and the writing life. She was a very cool mentor for a young writer to have.

One day I was over at her house and I was talking to her about a story idea I had; I can’t specifically remember what the story idea was, but I vaguely recall it being some sort Silence of the Lambs-esque thriller, in which an investigator and a serial killer matched wits, you know, as they do. And at some point, I dragged the investigator’s wife into the story, because, as I was, like, 24 years old and didn’t know a whole hell of a lot, I thought it would be an interesting character note for the investigator, and a good plot development for the book, for the serial killer to basically rape and torture the wife —

— at which point Pamela immediately went from interested to disgusted, threw up her hands, and had them make motions that I immediately interpreted as oh God Oh God this horrible idea of yours get it off me right now.

Aaaaand that was really the last time I ever considered rape as an interesting character note or plot device. Because, I don’t know. If you’re a 24-year-old wannabe fiction writer and an Oscar-winning storyteller is physically repelled by your casual insertion of rape and violence against women in your story, mightn’t that be a sign of something? That maybe you should pay attention to? Perhaps?

Now, as I got older and became a more accomplished storyteller (and human), there turned out to be many other reasons for me to decide not to put those sorts of scenes willy-nilly into my books aside from “dude, you just disgusted your successful writer friend with your plot twist.” But I’m not going to lie and pretend that this very significant clue, dropped by my friend, did not in fact make a long-lasting impression.

Which continues to this day. I’ve written eleven novels now, most with lots of action, adventure, peril and danger to characters of several genders, and lots of tough scenes that show loss and violence (see: most of The Ghost Brigades). No rape scenes. They weren’t necessary for the narrative — and more concretely, as narratives to stories don’t just magically happen but are the result of the author’s intention, I chose not to make circumstances in my novels where they would be necessary.

Sadly, not every young male novice storyteller has a woman friend who is also an Oscar winner to set him straight on the errors of his shallow narrative ways. Would that they did! So for everyone else I would just say (and here I tip my hat to Robert Jackson Bennett, who wrote in more detail about this today) that while you can put these sorts of scenes into your work, maybe before you do, you should ask yourself why. Ask yourself what actual value they will bring to your work. Ask yourself if you are entirely sure about that value.

And while you’re asking yourself that, keep my friend Pamela’s reaction to my proposed rape scene in your head. She’s not alone in that reaction these scenes, nor was she wrong to have it. Neither are other people.

Last year, I did several posts on what I consider to be a profoundly misguided and potentially harmful type of law known as “right-to-try.” Beginning about a year and a half ago, promoted by the libertarian think tank known as the Goldwater Institute, right-to-try laws began popping up in state legislatures, which I likened to Dallas Buyers Club laws. Both Jann Bellamy and I wrote about how these laws are far more likely to do harm than good, and that is a position that I maintain today. The idea behind these laws is to give terminally ill patients access to experimental drugs—in some cases drugs that have only passed phase I testing—that might help them. It’s an understandable, albeit flawed argument. After all, it’s perfectly understandable why terminally ill patients would fight for drugs that give them hope, and it’s just as understandable why politicians and the public would see such a goal as a good thing. In practice, as I will explain again in the context of this update, such laws are far more likely to harm patients than help them. Indeed, as you will see, in the year since the first wave of right-to-try laws have passed, not a single patient that I can find has obtained access to experimental drugs under a right-to-try law, much less been helped by them.

Unfortunately, given how effectively “right to try” has been sold on grounds of providing terminally ill patients hope and as a matter of personal freedom, it’s clear that this wave is not going to abate. Since Colorado passed the very first right-to-try law almost exactly a year ago today, a total of 17 more states now have passed passed similar legislation, the most recent being Tennessee, and 22 others have introduced legislation. It’s a good bet that right-to-try will pass in all of those states, because, as I’ve explained many times before and in many interviews, if you don’t understand clinical trial ethics and science, opposing the concept of right-to-try comes across like opposing Mom, apple pie, and the American flag, and leaves opponents open to false—but seemingly convincing—charges of callousness towards the terminally ill on the order of enjoying drop kicking puppies through flaming goalposts.

The con game that is “right-to-try” metastasizes

As I’ve pointed out many times before, opposing right-to-try is actually pro-patient, because these right-to-try laws that are passing all follow an explicit template written by the Goldwater Institute, and that template is very much a sham. For one thing, states do not control drug approval; the federal government through the FDA does. Consequently, state-level right to try laws, while giving the appearance of giving access to experimental drugs to patients, do nothing to actually achieve that goal. Worse, even if a patient were to get an experimental drug through right-to-try, these laws very much reflect the think tank that created them in that they leave the patient basically on his own. He can be charged the full cost of the investigational drug, which means that the only people who might be able to take advantage of these laws are those who are already rich or who are very good at fundraising. Worse, these laws explicitly indemnify drug companies and physicians from any liability arising from adverse outcomes, which means that even if a physician committed malpractice in advising or administering right-to-try drugs he probably couldn’t be sued. Moreover, such laws explicitly bar state employees from blocking or attempting to block an eligible patient’s access to an investigational drug or treatment. Even though there is a clause that says “counseling, advice, or a recommendation consistent with medical standards of care from a licensed health care provider is not a violation of this section,” where does “advice” end and “blocking” begin? Certainly as a physician in what is now a right-to-try state whose law has identical language, I wonder.

Even worse still, many of these laws, such as the one in Michigan, are written such that if a patient suffers a complication from a right-to-try drug or treatment his insurance company can argue that it doesn’t have to pay for the resulting care to treat that complication. Indeed, Colorado’s law requires that informed consent for right-to-try must explicitly make clear that, “the patient’s health insurer and provider are not obligated to pay for any care or treatments consequent to the use of the investigational drug, biologic product, or device” and that “in-home health care may be denied.” Elsewhere, the Colorado right-to-try law states:

An insurer may deny coverage to an eligible patient from the time the eligible patient begins use of the investigational drug, biologic product, or device through a period not to exceed six months from the time the investigational drug, biologic product, or device is no longer used by the patient; except that coverage may not be denied for a preexisting condition and for coverage of benefits which commenced prior to the time the eligible patient begins use of such drug, biologic product, or device.

In other words, if you access an experimental treatment under right-to-try, and you suffer a complication from the investigational treatment, you could well be out of luck getting your insurance company to pay for the medical and/or surgical treatment necessary to treat that complication. If your insurance company so decides, you’ll be on the hook for everything subsequent to that treatment. Indeed, to me the language in some of these bills implies that insurance companies can deny coverage for any new problems that come up after the patient starts using experimental therapy, whether caused by that therapy or not. These issues have largely been ignored in the news coverage of these laws, but the oncology community is finally waking up to them, as demonstrated by an article published a couple of weeks ago in HemeOnc Today in an article entitled “Expansion of ‘Right to Try’ legislation raises ethical, safety concerns“:

“There are a lot of issues not addressed in the bill that make the feasibility more challenging,” W. Thomas Purcell, MD, MBA, associate director for clinical services at the University of Colorado Cancer Center and executive medical director of oncology services at University of Colorado Hospital, told HemOnc Today. “If the drug is made available, who is going to administer it? Who is going to pay for any side effects related to the treatment? Are insurance companies going to cover any treatment-related complications? There are a lot of practical things that come into play with the introduction of the law, although the law doesn’t address any of those things.”

Actually, although he raises the same concerns I’ve been raising for over a year now, Dr. Purcell is about as wrong as wrong can be about one thing. The problem is not that the laws don’t address these things. It’s that the laws do address these things rather explicitly. Dr. Purcell seems blind to how these laws address these things, which is in a way likely to be highly detrimental to patients. In fact, I wonder if Dr. Purcell has even read his own state’s law! It says right there in black and white that insurance companies don’t have to pay for care or complications related to such drugs! That means that either the patient does, or we taxpayers do when patients suffering such complications are forced to go on Medicaid because they can no longer afford their medical care.

Another example of someone echoing what I’ve said many times appears here:

“People do not actually read the bills,” Alison Bateman-House, PhD, MPH, MA, Rudin postdoctoral fellow in the division of medical ethics at New York University Langone Medical Center, told HemOnc Today. “They think ‘Right to Try’ sounds fantastic and allows access to treat terminally ill patients. How could you not support that? For the most part, the response that we’ve seen is that these laws don’t do much, aside from giving people hope.”

Dr. Bateman-House is also partially wrong. The problem is not that people don’t read the bills. It’s that people don’t understand the anti-patient implications of the bills in terms of insurance coverage, eliminating the right to sue, and the like; don’t understand clinical trials; and don’t understand that it is the federal government, not state governments, who control drug approval and access to experimental drugs. Indeed, when I’m in a cynical mood, I wonder if Goldwater Institute flacks do understand all these things but don’t care because they’re playing a long game designed to weaken the FDA in the name of an ideology that, against all evidence to the contrary, preaches that the free market can assure drug safety and efficacy better than any government agency. Indeed, this intent can be seen in one version of the Goldwater Institute template (and in the Michigan right-to-try law), which changed the term “terminal illness” to “advanced illness,” without really changing the definition. I would not be surprised if, a few years from now, after the majority of states have passed right-to-try, there is a push to open up “right-to-try” to serious medical conditions that are not terminal on the basis of “fairness” and “compassion.” It’s coming. Mark my words.

Finally, there are the issues of safety and false hope. As I’ve said before, as hard as it is to believe, there are things worse than suffering a terminal illness; for instance, suffering a terminal illness and then bankrupting yourself before you die or suffering a terminal illness and then suffering a major complication of an experimental treatment that you have to pay for, thus bankrupting yourself before you die. Now, consider this. The only requirement for an investigational drug or treatment to be made available under right-to-try is that it has to have passed phase I testing and still be in clinical trials (i.e., phase II or III studies). Again, as I’ve described before, this is an incredibly low bar for safety, given that most phase I trials include less than 30 patients and are meant mainly as screening trials to identify the worst side effects and an appropriate dose to use in phase II trials. Yet, as I described before, the Goldwater Institute blatantly describes drugs that have passed phase I testing as having had their safety adequately established. It’s a lie.

Indeed, as is pointed out in the HemeOnc Today article, the risk for toxicity is actually higher in patients who would exercise right-to-try because by definition such patients have to be ineligible for a clinical trial. Remember, clinical trials are designed to minimize risks and maximize potential benefits because it is an ethical imperative in human experimentation, codified in the Common Rule and the Helsinki Declaration. One way they do that is to design the inclusion and exclusion criteria to achieve that end. Moreover, there have been cases where the use of an experimental therapy has become popular based on public pressure related to early evidence.

An excellent example of just what I’ve been warning about for a long time shows up in the HemeOnc Today article citing Dr. Yoram T. Unguru, a pediatric oncologist at the Herman and Walter Samuelson Children’s Hospital at Sinai Hospital in Baltimore and bioethicist at The Johns Hopkins Berman Institute of Bioethics:

In multiple cases, access to an experimental therapy has been expedited due to an early benefit observed in early studies that was not substantiated in subsequent research, Unguru said. One example was the use of autologous bone marrow transplantation in women with metastatic breast cancer, based on preliminary data published in 1995 in the Journal of Clinical Oncology.

“This completely backfired,” Unguru said. “In addition to being poorly designed, the study raises serious ethical concerns and, ultimately, people did much worse, including some who even died. This is why we go through the laborious, lengthy and, at times, seemingly maddening trial phases.”

Although physicians and drug companies are required to report data attained from patients treated through the FDA’s compassionate use program, Right to Try laws do not carry such stipulations.

And, as Colin Begg, PhD, chairman and attending biostatistician in the department of epidemiology and biostatistics at Memorial Sloan Kettering Cancer Center, adds, echoing (again) things I’ve been warning about for over a year:

Eliminating the FDA from the equation may have many significant consequences.

“There is good reason we have the FDA,” Begg said. “The rigorous testing with scientific methods of drugs that come through the pipeline is absolutely essential. Without it, the market would be flooded with drugs that do not work. You would have a cupboard full of drugs that you would want to try, and you would have no idea which one to try because there would be no reliable evidence about the efficacy of any one of them.”

Right-to-try laws may create a precedence for additional changes to drug R&D.

“If we go down this road, there might be a loosening of the standards of drug approval in the first place, and that would be bad for public health,” Begg said. “This movement may ultimately lead to situations where … drugs, in general, would no longer have to go through such rigorous testing to see if they work.”

Unfortunately, what Dr. Unguru and Begg apparently fail to realize is that the libertarian Goldwater Institute cares little or nothing about the difficult balancing of patient rights versus patient safety and societal good that our current clinical trial system tries to maintain, with varying degrees of success depending on the specific situation. An argument, for example, that right-to-try might make it more difficult to recruit patients to clinical trials holds exactly zero water with the Goldwater Institute and most other supporters of right-to-try. Indeed, associated as it is with the “health freedom” movement, the goals of the Goldwater Institute’s right-to-try push appear to align quite nicely with the goal of some libertarians to eliminate most of the FDA’s authority because of an ideology, which views any government intrusion into the free market with a jaundiced eye and even believes that the unfettered free market will take care of sorting out safety and efficacy of drugs. We all know how that worked out before the passage of the original act creating the FDA in 1906 and the Kefauver Harris Amendment of 1962 that introduced the requirement that drug manufacturers demonstrate efficacy as well as safety to the FDA before a drug is approved.

Those of us who take care of breast cancer patients remember Dr. Unguru’s cautionary tale from the 1990s. Indeed, the clinical trial publication that fueled the demand for high dose chemotherapy with bone marrow transplant for advanced breast cancer was ultimately retracted. The bandwagon effect is a powerful force affecting politics and even prominent researchers and physicians before the evidence is adequate to recommend a treatment. If this can happen with a treatment as incredibly toxic and risky as bone marrow ablation with high dose chemotherapy followed by stem cell rescue, imagine how easily it can happen with less spectacular examples.

Over a year ago, when the states on the vanguard of the right-to-try movement were first seeing such legislation introduced, I learned the hard way just how willing the movement was to paint its opponents as those proverbial puppy-kicking, American flag burning, cold-hearted “scientists.” Indeed, back then almost the only people I saw routinely speaking out against right-to-try were noted bioethicist Arthur Caplan and little ol’ me, an insignificant blogger. When right-to-try was introduced into my own state’s legislature, my interaction with my state representative, who politely thanked me for pointing out the many problems with right to try, but made it clear through his response that he was likely going to vote for it anyway, showed that, from a political standpoint at least, ethics- and science-based medicine were not likely to prevail in Michigan or anywhere else over the emotional appeal of “doing something” to help terminally ill patients. It didn’t matter whether that “something” will actually do what it promises or not. Later, I met with an advocate of the biotech industry who testified against the bill. He described a scene in which he was the lone expert testifying against right-to-try versus a flack from the Goldwater Institute and patients with terminal illnesses and their families, the latter of whom all glared at him as though he were personally going to execute them or their ill family member. I learned that no one associated with a major cancer center was willing to publicly oppose right-to-try, even though they uniformly thought it was a horrible idea. If I had found out about the hearing in time to have made the trip to Lansing—as I recall, it occurred with little notice and on one of my operating room days—I honestly don’t know if I would have had the wherewithal to do so myself, given the pushback I had received from my previous posts on the matter.

As I said, right-to-try is a con game perpetrated on desperate patients, offering them false hope but instead delivering nothing of value that can’t be obtained under FDA compassionate use programs, as is pointed out by the opinion piece written by Dr. Jeffrey M. Peppercorn, a medical oncologist specializing in breast cancer at Massachusetts General Hospital, in a point-counterpoint forum included after the HemeOnc Today article that asks: Do the changes to the FDA’s compassionate use program eliminate the need for ‘Right to Try’ laws? Dr. Peppercorn takes the “yes” position:

However, the question is not whether promotion of access to promising drugs for patients with terminal disease is justified, but how this can best be accomplished. The same imperative that drives Right to Try laws underlies the FDA’s compassionate use program. The primary difference is that access to experimental drugs through compassionate use programs is regulated in the interest of both the patient and society. Physicians must seek FDA approval before a manufacturer provides the unproven drug, and the rationale for use of the drug, absence of alternatives, informed consent and review by an independent institutional review board must be documented. In addition, toxicities and outcomes after administration must be reported. This process promotes responsible practice of evidence-based medicine — even as the evidence evolves — and provides a chance for monitoring, both of the specific intervention and of the use of experimental therapy more generally. Although the process can be burdensome, the FDA has recently streamlined the application to allow for completion in less than 45 minutes and still allows for rapid approval of emergency access by phone when this is clinically justified.

Exactly.

The key difference between right-to-try and FDA compassionate use programs is that right-to-try strips pretty much all protections from patients who would use it; requires them to pay for the drug and any care related to the drug; prevents them from suing manufacturers and doctors if something goes wrong; prevents the state from taking action against the licenses of providers who give patients bad advice recommending right-to-try; tells insurance companies that, not only do they not have to pay for the investigational agent or device, but they don’t have to pay for any complications arising from use of the investigational agent or device; and makes doctors and other health care providers working for right-to-try states leery of advising too strongly against right-to-try, lest they be prosecuted for “blocking” access to experimental drugs. FDA compassionate use programs, in marked contrast, require review and oversight by an institutional review board (IRB). The other difference was that, although 99.5% of compassionate use/expanded access requests are approved by the FDA, the process was onerous. As Dr. Peppercorn points out, that is rapidly changing, arguably eliminating the “need” for right-to-try. Yet right-to-try marches on, because the reason for right-to-try is not as represented by the Goldwater Institute. Rather, it’s to weaken and ultimately neuter the FDA.

Other pernicious effects of right-to-try

Patients come first, and must always come first, which is why my key objection to right-to-try remains (and will always remain) that it is bad for patients. However, the HemeOnc Today article also points out other problems with the legislation. One is that it presents a major dilemma to industry. Now, I realize that few people are particularly sympathetic to industry, and even we “pharma shills” (at least that’s what right-to-try proponents and those supporting alternative medicine, groups that not-infrequently overlap, call us) recognize that pharma is nowhere near innocent in provoking that reaction. Now that right-to-try laws are metastasizing throughout the US, oncologists are finally taking notice of the alarms that we few have been sounding:

The fact that manufacturers are not liable if a drug obtained through Right to Try fails or causes significant harm may allow pharmaceutical companies to benefit from such legislation, Unguru said.

“The way the laws are written, pharmaceutical companies are under no commitment to release these drugs, but should patients be able to access them, there is almost no consequence in the event of a bad outcome,” Unguru said. “Bypassing the current regulatory system means that some drugs that may not be safe or ready for widespread use essentially get a ‘free pass.’ Some pharmaceutical companies might see such laws as a way to test their drugs in a way they typically would not be able to without being held accountable.”

This would pose significant safety issues to society.

“It is hard to argue that individual patients who are dying and want access to a drug should not get it,” Begg said. “But the concern I have is that the ability of drug companies to market drugs that have not been properly tested is not in the interest of the public.”

The Texas State Senate and House have passed versions of a Goldwater Institute-inspired right-to-try law. The only difference in the two bills is that the House version would allow manufacturers to provide experimental drugs to patients at cost, whereas the Senate version would require that companies that provide such drugs donate them. Assuming the two versions are reconciled and passed and the governor signs the bill, say goodbye to any chance of shutting down Stanislaw Burzynski, as the law would explicitly bar the Texas Medical Board from pursuing its current action against Burzynski’s medical license, given that he could claim his antineoplastons have passed phase I clinical trials and are in phase II, which makes them eligible for right-to-try. Even if the Senate version prevails, Burzynski’s business model of providing his unproven antineoplastons for free but charging big bucks for “case management” fees would remain intact.

Most drug companies are not as unethical as Burzynski, however, which is why most do not support right-to-try and the Pharmaceutical Research and Manufacturers of America (PhRMA) is not supportive, as described in the HemeOnc Today article. Pharmaceutical companies remember incidents like this:

In the past, public pressure has forced pharmaceutical companies to grant access under compassionate use.

Last year, Chimerix denied Josh Hardy — a then 7-year-old boy who developed an adenovirus infection after undergoing a bone marrow transplant for rhabdoid tumor of the kidney — access to the experimental antiviral drug brincidofovir (CMX001). After a social media firestorm — which included death threats to the company’s leadership — Chimerix commenced an open-label phase 3 trial so Hardy could enroll and receive treatment.

“This became publicized, and everyone assumed that if Josh Hardy got brincidofovir he would survive,” Bateman-House said. “He did get brincidofovir, and he did survive. Thomas Duncan, the man who died of Ebola in Texas, got the same drug and died. Chimerix is a small drug company and brincidofovir is its only drug in development, and its stock took a nosedive after Duncan’s death. If it were not for the fact that phase 3 trials were already close to completion, this could have killed the company. If Josh Hardy had died, that could have killed the company.”

In other words:

“It can go either way — you’re damned if you do and you’re damned if you don’t,” Unguru said. “If you release the drug and it does badly, then you’re going to get bad press. If you don’t release it, then you risk being vilified.”

And if the company charges for the drug and things go badly, it will be doubly vilified, even though small pharmaceutical companies often have just enough venture capital to make enough of the drug to do the clinical trials necessary for approval, and releasing drug jeopardizes its ability to do those trials.

Physicians are also put in a bind when a patient has exhausted everything and wants to pursue right-to-try. End-of-life discussions are very difficult to begin with, because, as I’ve pointed out before, no physician wants to be hope’s executioner. Yet, sometimes that is our job, and the best we can offer is palliation. Given that right-to-try theoretically requires less effort than an expanded access exception, there will be enormous pressure on physicians to accede to the wishes of a terminally ill patient to pursue right-to-try even if the physician thinks it won’t work. The option of right-to-try might thus actually provide a physician with an option to avoid the hard discussion that end-of-life care entails and just facilitate the patient’s getting the drug. As Dr. Charles F. Levenback, professor in the department of gynecologic oncology and reproductive medicine at The University of Texas MD Anderson Cancer Center, puts it:

“I’ve heard ethicists say physicians may go in the direction of compassionate use to avoid the difficult conversation about mortality and the limits of what we can provide,” Levenback said. “All of compassionate use is predicated on the physician’s responsibility to be candid about the purpose of treatment — palliative vs. curative — and setting the patient’s expectations correctly.”

Correct. However, some doctors are better at doing this than others.

The track record of right-to-try thus far

Given that it’s now been a year, or nearly so, since the first batch of states passed their right-to-try initiatives, I asked a simple question: Has a terminally ill patient obtained an investigational agent through right-to-try yet? Note that I didn’t even ask whether a single terminally ill patient has benefitted from right-to-try, because that’s much more difficult to ascertain. Doing extensive Google searches, I could not find a single example, although I did come up with a lot of examples of patients expressing hope that such laws would get them access to investigational drugs (like this one). My next thought was that, if anyone would know of a case in which a terminally ill patient has been granted access to an experimental drug under right-to-try, it would be the Goldwater Institute. So I engaged Christina Sandefur, Vice President for Policy, on Twitter thusly:

.@cmsandefur Except that #RightToTry laws don’t really do that. False promise.

— David Gorski (@gorskon) May 6, 2015

I then asked:

.@cmsandefur Has anyone anywhere gotten experimental drug under #RightToTry? It’s been a year now since Colorado. I know of no case. — David Gorski (@gorskon) May 6, 2015

Her response:

@gorskon these laws are just now going into effect,& it takes time to acclimate to overhaul of status quo. Offer to have a real convo stands

— Christina Sandefur (@cmsandefur) May 6, 2015

Which resulted in:

@gorskon Again,I welcome thoughtful,substantive discussion, but I’m not interested in unproductive back-and-forth. You know where to find us — Christina Sandefur (@cmsandefur) May 6, 2015

What’s irritating about this exchange is that I was trying to engage Ms. Sandefur in a “thoughtful convo”—or, at least, as thoughtful a conversation as you can have on Twitter. What is it with people like this who seem to want to try to get me on the telephone to discuss such matters when they can’t manage to engage me online, be it on Twitter, the comments of my blog posts, or even by e-mail, where you can have a really thoughtful conversation? I tend to suspect it’s because they don’t want to leave a “paper trail” (or an “electron trail” in the case of e-mail exchanges) documenting what they actually said. Perhaps I should respond to her that I’d be happy to talk to her on the phone, but only if she gives me permission to record the conversation. (In turn, I, of course, will give her permission to do the same.) In any case, I think it reasonable to assume that, if there were a patient in Colorado—or anywhere else, for that matter—who has successfully obtained an experimental drug under right-to-try, Sandefur would know about it and would not have hesitated to provide links to relevant news stories. She did not. Instead she chose to dodge the question and make excuses. Similarly, Kurt Altman, national policy adviser and general counsel for Goldwater Institute, mentioned no patients who had yet benefited from right-to-try in his “counterpoint” to Dr. Peppercorn’s opinion piece. I know he would have if such a patient existed. Certainly, if I were writing in favor of right-to-try, I would use the examples of such patients if they existed. Others have also noted that there appears as yet not to be a single patient who has obtained an experimental drug through a right-to-try law, much less benefited from it. Indeed, one man moved to Missouri to try to take advantage of right-to-try for his amyotrophic lateral sclerosis and has thus far failed.

Right-to-try laws: Bad for patients

I have little doubt that some version of right-to-try will likely pass in every state in which it has been introduced, which means we could be looking at up to 40 states, possibly more, with such laws by next year. It must be emphasized that the vast majority of legislators proposing such bills and passing them into laws and the patients lobbying for right-to-try do so with the best intentions, believing such laws will help terminally ill patients. These patients, according to mistaken popular belief, have nothing left to lose when in fact they do, even though it might not seem that way. In the idealistic desire to help the terminally ill, supporters of right-to-try either don’t pay attention to or downplay the significant negative aspects of these bills, which permit the loss of insurance coverage, stripping of IRB protections that patients receiving such medications through expanded access programs, the economic injustice in which only the rich or those capable of raising large sums of money could benefit if the drug company was unwilling to provide the investigational drug for free, and the potential additional risk of harm that can come from using experimental drugs outside the rigorous design and protections of clinical trials. Most people are similarly unaware that granting less controlled access to such medications is far more likely to cause an individual patient harm than good. Moreover, liberalization of expanded access programs to vastly decrease the burden of paperwork and effort on the part of physicians and patient has already been placed in draft guidelines, rendering right-to-try unnecessary.

So why are right-to-try laws so popular? In an editorial last year published in JAMA Internal Medicine entitled “The Strange Allure of State “Right-to-Try” Laws“, Patricia Zettler and Henry Greely ask the same question, noting that a recommendation from a physician is no substitute for the evidence of safety and effectiveness that comes from later-phase clinical trials:

So what is the point of these laws? A skeptic might point out that opposing experimental treatments for dying people is unpopular. Patients have publicized—and gained public support for—their efforts to obtain experimental treatments through social media. Lawmakers have little to lose politically by supporting these laws. Companies, seeing their ineffectiveness, have no powerful reasons to oppose them. And libertarians can celebrate an attack on big government. The problem is that all these efforts are unlikely to actually help the patients with life-threatening diseases. Indeed, these laws may be harmful if they draw attention and resources away from efforts to develop effective treatments, engender confusion about the FDA pathway for compassionate use of medications, or create false hopes for terminally ill patients.

All of which right-to-try laws do, and worse.

There will always be a conflict between personal freedom and protecting patients, as well as ensuring maximal societal good. We see this in opposition to school vaccine mandates, support for cancer quackery and dubious stem cell clinics, and, of course, right-to-try. Unfortunately right-to-try laws represent dangerous placebo legislation. They only give the illusion of doing something given that the FDA, not the states, controls drug approval. The reason for their existence is not so much to help patients, but as part of a long game to build a groundswell of support for policies that would ultimately hobble the FDA’s ability to oversee the efficacy and safety of drugs. These laws are bad for patients, bad for doctors, bad for drug development, and bad for science. That’s why going through the states is the wrong way to attack this problem. If we as a society believe that terminally ill patients should have easier access to investigational drugs, then reforming how the FDA handles compassionate use exemptions, not a patchwork of state laws with no teeth, is how it should be done.

1. The illusions of “right to try” laws
2. “Right to try” laws and Dallas Buyers’ Club: Great movie, terrible for patients and terrible policy
3. The Compassionate Freedom of Choice Act: Ill-advised “right to try” goes federal
4. The false hope of “right-to-try” metastasizes to Michigan
5. Using the fear of Ebola to promote the placebo legislation that is “right to try”

Elsewhere:

How State Right-To-Try Laws Create False Expectations.

The authors get it:

Putting aside the invalidity of RTT laws and the false hope they create, these laws also fail to address more fundamental health and safety issues. RTT laws seek to grant vulnerable patients access to unproven and potentially harmful drugs or other medical products without any expert safeguards, such as scientific or ethical review by an Institutional Review Board or similar body.

Moreover, these laws undermine the clinical trial infrastructure regulated by FDA, which was developed to ensure that medical products are tested on a sufficiently diverse population in a scientifically sound manner to bring safe and effective products to market. By allowing anyone to obtain an experimental treatment outside the confines of a regulated clinical trial, RTT laws reduce incentives to participate in clinical trials, increasing the complexity of recruiting sufficient study participants.

Further, due to complex manufacturing requirements, there may be only limited amounts of investigational product available, so RTT laws, if they resulted in patients receiving investigational treatments outside of clinical trials, may divert resources needed for those clinical trials. As a result, the trials—upon which FDA approval ultimately depends—may be slowed. Although touting ostensibly laudable goals, RTT laws do not take any steps to navigate the thorny issues raised by use of experimental treatments, including potential delay in getting FDA approved products to the market, where they can benefit the public at large.

real-faker:

stutterhug:

Calling up A Friend

Nekomancer

Feel Magic

I have a particularly uneasy relationship with food. Buying it, cooking it, remembering to eat it. I will go hungry for hours, sometimes days when the headweasels are particularly bad. I develop this dread of dealing with food that causes me to freeze and want to just sleep until the anxiety goes away.

I’ve always had some sort of weird tension around food, from what I can recall- when I was a child, I would break into the baking cabinet and binge on chocolate chips until I was sick. It’s sort of funny, as back then, I was skinny as a rail- it was only when I started taking medication for depression and thus gained weight that I went from devouring everything in my path to picking at what was on my plate. I learned how to ignore my body for hours, and am still unlearning the damage, even while people scowl at me in restaurants for eating at all.

I feel like most people, when they need groceries, or want a snack, just pack up, go to the store, and buy what they want. None of the individual things are particularly difficult for me- making a list, driving, finding what I need, paying for it, unpacking. But because of all the the above trauma, when I need to go to the shop, I spend sometimes weeks persuading myself that I can do it. I put it off by buying takeout, and portioning it out for several days. I go through my pantry and eat random things that don’t really go together in order to procrastinate going to the store. I find friends to go to dinner with.

With the advent of the internet, it’s much easier than ever to get all sorts of things delivered, including the dreaded groceries. I did that for the first time today- had a stranger buy my groceries for me and bring them to my apartment so I didn’t have to leave. And as I clicked the “order” button and was flooded with a sense of relief, I wondered- was I doing self care, or was I avoiding challenging myself and my fears? Was the fact that I am now more willing to pay extra for someone else to bring food to me actually making my anxiety around food and cooking worse?

I’m not sure. Sometimes it feels like a reward for doing something I find difficult, like finishing a hard piece or getting an unpleasant task done. But sometimes, it’s simply because the idea of going into the fridge and figuring out what to cook is just that horrifying for me. While I appreciate that my partners cook for me, I don’t want to be frozen in place forever on my own, only eating fruit and vegetables that require no more prep than rinsing them off.

I’m trying to give myself small challenges, like today I made guacamole, and also I made my own french fries from scratch. Nothing too complex, but quick and easy enough that I could make them and be eating food that came from my veg box and would end up going bad. I like the food I make, but I’m still exploring why I have so much panic about the process. I suspect that it comes in part from having multiple kitchens in my life that were difficult to maneuver or cook in, which often stood in the way of me taking care of my food needs. Now I have an open kitchen and the dishes are always done, so I’m very slowly becoming less tense around food prep.

In the meantime, as I slowly breathe through this, I’m trying not to feel guilty when I pay someone to do my grocery shopping for me. It feels so ridiculously privileged, but it’s also the only way I’d eat sometimes. I struggle a lot with wondering if my mental health issues make me seem like a bougie bitch when really it’s just that people terrify me, seemingly more and more so each year. I suspect the hardest part is going to be giving myself space to need that kind of task done for me, for a while, as I keep pushing forward in relearning how to be outgoing. The world doesn’t feel very safe, and for now being in retreat makes sense… but it’s not where I want to be forever.

How do you balance taking care of mental health issues with not wanting to give into the spirals that hold you back?

siddharthasmama:

Myth: women of color, particularly black women, abuse the system and are “welfare queens”.

Reality: white women/families are the biggest recipient group and are also more likely to abuse the service and commit fraud.