Dangerous Assumptions

Autism, Books, Neurodiversity, Parenting

Trigger Warning: This post will discuss ableism, abuse and filicide of disabled children and adults, dehumanizing language about autistic people, and harmful behavioral therapy. I’m placing a trigger warning here as a matter of courtesy to readers who have forms of PTSD that could be triggered by these topics.

I recently read a book called Ghost Boy by Martin Pistorious. This remarkably compassionate and sensitive memoir relays the story of how Pistorious fell ill with a virus at age 12, went into a kind of waking coma for a few years, and reemerged into consciousness in his mid-teens. When he awoke from that blackout state he had very little control over his body, so that he was unable to signal to anyone in any way that he was again aware, listening, and wanting to communicate.

Eventually an attentive caretaker noticed that he seemed to want to communicate and she advocated for him to be evaluated as a potential AAC (Augmentative and Alternative Communication) user. He was able to use eye gaze to prove that he could communicate, and eventually, with hard work and great passion, learned to use a few different AAC tools, including of course typing out his memoir of these experiences.

Meanwhile, I’ve also been reading Typed Words Loud Voices, a book of essays edited by Amy Sequenzia and Elizabeth J. Grace. It’s a slim volume out of Autonomous Press but I’ve been savoring it slowly. These essays (and a few poems) are all written by people who type to communicate; some are autistic, some are not, some are functionally non-speaking, some are partially non-speaking, and some speak most of the time but communicate better through typing than through talking. A common thread through these works is the experience of typed communication as freedom for the authors – freedom from the pain of being misunderstood.

A book review came out in The New Yorker last week that has set my mind on fire. In “Seeing the Spectrum,” Steven Shapin reviews the new book In A Different KeyThe Story of Autism, but he has a few choice editorial comments to make about autistic people himself. I’ll leave my thoughts on the book for another time as my copy is currently in the mail and I plan to read and review it fully.

One of Shapin’s remarks goes thusly: “It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

His choice of words here strikes me as notably harsh and hateful, but the truth is, the sentiment beneath them is far from original. The idea that having a child who does not speak or like certain kinds of touch is soulless and tragic is, unfortunately, not only not new – it’s terribly commonplace. Shapin, like everyone else who parrots this narrative, leaves aside the question of why such a child might self-harm, but let’s not.

A common straw man argument that people use against autistic adults who argue for acceptance is that we are not like those so-called low functioning children and therefore cannot speak for them or even about them with any credibility. This argument assumes quite a lot: it assumes, for one thing, that none of us are parents to autistic children. It assumes that none of us were once non-speaking children who were thought to be “low functioning.” It assumes that functioning is a set of two static, binary categories. And it assumes – and this is so important to point out – that none of the autistic activists fighting for acceptance and equality online, in articles, in blog posts, and on Twitter, is actually non-speaking themselves.

Shapin makes the absurd distinction that “the capacity for independent living is an important factor in whether an individual is held to be ‘high functioning’ or ‘low functioning’.” I’ve also heard it said that the ability to hold a job is what qualifies an autistic person as high functioning. Of course, the ability to live on one’s own and hold a job are things that are only pathologized for disabled people, right? Lots of non-disabled people struggle with those things without being called low functioning.

If you stop to think for even a few seconds about what these labels mean, I think – I hope – you will see how little sense they make. Which label do you slap on a person who does not speak, needs significant daily live-in care, but can write a book? Which label do you slap on a person who speaks fluently, and lives alone, but relies on disability payments for income? I hope that it is obvious how arbitrary it is to qualify a human being’s “functionality” if you really consider it for a moment or two.

Of course, people like Shapin bolster their arguments by dismissing out of hand those who require assistance to use AAC – sometimes called “supported typing” or “facilitated communication” (FC). (The link in previous sentence goes to an awesome post on Unstrange Mind that includes videos of FC users in action.) FC was supposedly “debunked” in the 90s, but that research is now known to have been bad science, and there are many wonderful FC success stories, including that of Amy Sequenzia (co-editor of Typed Words mentioned above) and poet Tito Mukhopadhyay (one of the autistics featured in Spectrum: The Film). By dismissing both the autistics who speak and those who don’t but use assisted typing to communicate, the people who want to discredit the neurodiversity movement get us both coming and going.

Where am I going with this and how does it all relate? I want to return to Shapin’s statement about the searing experience, if you can bear to reread it: “It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

By dismissing the voices of those who type to communicate, by erasing the souls of children who do not talk, Shapin and others who perpetuate this kind of narrative dehumanize autistic people. Dr. Ivar Lovaas, the founder of ABA therapy whom Shapin extols in his piece, once said of autistic children, “You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense.” I hope that if you ponder it for even a moment, that quote runs a chill down your spine.

This dehumanization and dismissal of autistics as not-people, as not really there, as soulless, as without thought, is precisely the kind of story – the kind of lie – that leads to abuse and murder of autistic children and adults. We don’t have to speculate that such awful things could happen; they do happen, with disturbing regularity. What sorts of things would people, in their carelessness, callousness, and sometimes cruelty, do to a person whom they think is not really, in any practical sense, there?

Martin Pistorious tells us in Ghost Boy of the awful things that were done to him when he was unable to communicate. He was treated like a thing, like an annoyance, treated worse than an animal, when people viewed him as not-a-person simply because he could not speak.

Aaron Greenwood tells us in Typed Words, “i was never ok with being treated like i needed to change. it is a horrible reality only to have people in power treat you like an object only without asking you or respecting you.”

It’s inexcusable, inhumane, and utterly irrational to persist in the belief that people who don’t speak do not think, when over and over and over again – given access to some usable communication tool – they tell us that they do.

There’s a concept from Disability history called “the least dangerous assumption.” As applied to people with communication differences, including non-speaking autistics, it means that in a very real way, the least dangerous assumption parents, teachers, caregivers, and the public can make about a person who currently is not able to verbally communicate is that they have complex thoughts and feelings just like any other person, but are not yet able to express them.

What harm, after all, could be done by treating this person with respect and assuming that they do understand you, they do feel a wide range of emotions, they do have thoughts and opinions, and that the ways they do communicate – be it laughter, echolalia, screams, or even self-injury – are meaningful? At worst, they never do find a method of expressing their complex thoughts, but have been treated like a human being.

The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.

Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?

The desire to be seen is perhaps the strongest craving in a human being. To simply be seen or heard by another person is the most basic level of communication; and I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you. Martin Pistorious did this with only the smallest movement of his eyes at first – and a person who was willing to see him. Aaron Greenwood (again from Typed Words) wrote of his “life’s longing to be part of this world.”

Everyone wants this: a place in the world. And everyone can have it, if we truly listen. 

Image is a photo of the Earth in space, as a background to the text in capital white letters: “Everyone can have this: a place in the wold. And everyone can have it, if we truly listen. eisforerin.com”

My Top Ten Books of 2015

Autism, Books, Neurodiversity

I did not read as many books in 2015 as I usually do, and many of the books I read were graphic novels – so, much lower word count this year, if I were counting. It was hard for me to focus my attention on anything book-length, unless it were especially compelling. As a result, of the books that I did read, there are some real superstars. Here are my top ten, in chronological order.

(Note: book links will now take you to Goodreads, since linking to my Amazon affiliate shop is a pain in the ass and I never make any money on them anyway.)

Nerdy, Shy, and Socially Inappropriate by Cynthia Kim. Although this book talks about “Asperger’s syndrome,” terminology that I reject and Kim later did as well, this is one of my favorite books about being autistic. Like me, Kim found out she was autistic as an adult, after her “work-arounds” in life started to fail and she began to wonder why exactly she was having a difficult time coping. Obviously this is a great book for anyone who has an adult diagnosis (self- or otherwise) of autism, but it’s also really great at explaining the various aspects of being autistic, just in general. She talks about marriage and parenting a little bit, gives a lot of relatable stimming examples, and I believe this book contains probably the best explanation of executive functioning ever.

This Is How You Lose Her by Junot Diaz. Diaz is an author I need to read more, and I’m not sure why I haven’t except that I keep forgetting. This book made me uncomfortable, but in a good way. Yunior, the character at the heart of these short stories, is an asshole and a womanizer, a man I was both drawn to and repulsed by. The writing is raw and honest and has an energy that pulls you in and holds you there.

Blankets by Craig Thompson. Blankets is the book that ignited my passion for graphic novels this year. It’s a beautiful, heartbreaking memoir about falling in love and losing your religion, about dysfunctional families and the exhilarating heartache of adolescence. I loved it so much I wished I had written it.

Schulz and Peanuts: A Biography by David Michaelis. This is a special interest topic so I’m sure not everyone would enjoy this book, but I really enjoyed it, and it was enormous so it took up a lot of headspace for me this year! Despite the way the author seemed disdainful and misunderstanding toward Charles “Sparky” Schulz through much of the biography, I felt that Sparky shone through as a complicated, often lonely person with a deep passion for his cartoons.

Stitches by David Small. Another outstanding graphic memoir, the word that always comes to mind when I think of Stitches is “haunting.” It’s dark and devastating, but beautiful. The genius of this book is in the way the words and images are perfectly interwoven to tell the story; often the drawings take over the storytelling when words simply cannot. I never wanted this book to end.

I Was A Child: A Memoir by Bruce Eric Kaplan. I adored this weird, weird little memoir. Kaplan is better known as BEK, creator of the minimalist, scribble-like cartoons that the New Yorker made famous. What would a minimalist cartoonist write if he wrote a memoir? A series of little moments of memory, small keyhole views of childhood, perfectly described. Thinking about this book makes me want to read it again and again.

Furiously Happy: A Funny Book About Horrible Things by Jenny Lawson. I have to admit that this book just barely edged out some others to make my list. I enjoyed this book a lot, it was funny and entertaining and made me feel good, but it didn’t take over my mind the way the other nine on the list did this year.

Between the World And Me by Ta-Nehisi Coates. It is difficult for me to review or even summarize this book because everything I try to write about it feels small next to the magnitude of Coates’s writing. The book takes the form of a long letter to his son, in which he weaves together his own life story with the larger story of systemic racism – the experience of being black in America. His central argument is that we cannot know how to move forward without taking an honest look at where we’ve been and where we are – but he does this with more elegance and beauty than I can rightly convey.

Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently by Steve Silberman. I had, and still have, a complicated mix of thoughts and feelings about this book. Its strength lies in telling the world the true history of the pathologization of autism and the way the false concept of an autism epidemic came about – the stories of Asperger, Kanner, Lovaas, and assorted historical figures of that era like Bernie Rimland and Bettleheim and such. Many people have correctly criticized him for white-washing, male-washing, and geek-washing the autistic community and wished that he had done a better job of portraying autistic diversity. Over time I’ve come to think that he should have actually cut even more from this book and just limited his scope to his areas of strength – telling the history of autism research. Autistic people can do a better job of describing our own culture.

The Real Experts: Readings for Parents of Autistic Children ed. Michelle Sutton. As a fitting follow up to Neurotribes, here is an excellent collection of autistic people describing their own culture and sharing their experiences of the world. It’s another book that’s hard to sum up, in this case because of the rich diversity of voices and topics it covers, with essays from Nick Walker, Ally Grace, Emily Paige Ballou, Alyssa Hillary, Cynthia Kim, Kassiane Sibley, Sparrow Rose Jones, Michael Scott Monje Jr., Elizabeth J. Grace, Briannon Lee, Morénike Giwa Onaiwu, and Amy Sequenzia, with introductions to each author written by Michelle Sutton. I highly recommend to anyone who is interested in what it means to be an autistic person in the world, from the point of view of those who know best.

Listening to The Real Experts

Autism, Books, Neurodiversity, Parenting

Image is the front cover of The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton. Front cover blurb reads: “Full of practical advice… a landmark book.” – Steve Silberman.

The Real Experts: Readings for Parents of Autistic Children, a collection of essays written by autistic authors and collected by editor Michelle Sutton, is a challenge for me to review. In my efforts to do so, I read through the entire book twice, once just to enjoy it, and then again to highlight my favorite passages. Even so, when I try to sit down and write a review, all I can seem to come up with a bubble of excitement in my chest and a wordless feeling that is kind of like a whole body fist pump, and then the equivalent of a third grader book review: “This book was AWESOME! You should totally read it!”

But why, Erin, tell us why. Yes, I still remember the format: a brief synopsis, then tell us what you think of it and why.

Michelle Sutton is a writer, neurodiversity rights activist, and mother in a neurodiverse family (for those new to the term, neurodiverse means that within her family are a variety of neurological types). She put this collection together by selecting a group of essays and articles, all written by autistic people, as a guide for parents – and other people who know, love, or work with autistic children – but mainly for the parents.

These are the people (or some of them, anyway) whose work and words have guided her in her own journey of parenting autistic children and now she wants to share them with others. I would not, however, want to limit this book only to people with autistic children in their lives, because in my view, it appeals to an even wider audience: anyone who is interested in learning more about what being autistic means, anyone who has a passion for equality for marginalized people, and anyone who cares about disability rights (and really, shouldn’t that be everyone?) will get a lot from The Real Experts. 

The authors in the book (including Sutton herself) are also all people from whom I have learned a lot – about parenting, about being autistic, about activism, about writing, and even about friendship, as some have personally been mentors and friends to me. I can imagine how difficult it was for Sutton to choose only one or two pieces each from the impressive bodies of work these authors have created.

What is covered by The Real Experts, in a purely topical sense, are a range of subjects of interest to everyone with a connection to the autistic community – communication, sensory processing differences, “passing” as neurotypical, ABA therapy, functioning labels, identity first language, disclosure of diagnosis, intersectionality, all kicked off by Nick Walker‘s well known article “What is Autism?” (Link goes to the book’s foreword, republished on his blog.)

Those are all important, useful, even crucial topics, but even those thought provoking questions and answers are only a part of what The Real Experts offers. The rest is the thing that gives me that bubble of excitement that I can’t quite put into words. There is power here. Beauty that almost hurts. Pain that almost heals. Vulnerability so real it leaves you a little breathless. There is love, expanding beyond what the page can contain.

Ultimately, The Real Experts is a book not only about parenting, or autism, or disability, but about humanity. This is a book in which autistic voices call out to the world with strength and clarity: we are here. We are people. We think, feel, love, hurt, and wonder. We thrive when you nurture us, but we will also triumph if you reject us. This is a book that challenges you: we will find our place in the world even if you try to stop us. And it’s a book that invites you: find that place with us.

*

The Real Experts can be ordered directly from Autonomous Press, an independent press cooperatively owned by disabled workers. 

Uniquely Human: Book Review

Books, Neurodiversity

Image is the book cover for Uniquely Human by Barry M. Prizant, PhD.

Author Barry M. Prizant is a consultant and “autism expert” who works with the families of autistic children. His new book Uniquely Human is popular in the autism community right now because it proposes “a different way of seeing autism” (per the subtitle), which is that autistic people are not diseased or disordered, but, well, uniquely human.

I have so many mixed feelings about this book it’s hard to know how to approach it in a review or even in recommending it to people in casual conversation. Just looking at the book cover makes me feel a little sad because… is it really “different” to see autistic people as human? This book is striking a nerve with a lot of people, so obviously the answer is yes, this idea that autistic people are human beings who happen to experience the world differently from neurotypical people does sound like a revolutionary message to many readers. His message of compassion is revolutionary. His message that no one should try to extinguish “autistic behaviors” is revolutionary, to many people (not to most autistics, I can assure you).

As with Steve Silberman’s NeuroTribes, I would say that this is on the whole a good and useful book but there are some important critical points that I want to make about it, many of which are about language choices.

One comes up right in the Author’s Note at the beginning, which is about Prizant’s use of person first language (“person with autism”) versus identity first language (“autistic person”). Though he acknowledges that some (I would argue most) autistic people prefer identity first language, he chooses to use person first, without actually explaining why. I wish he had given some reason for this as I find it an odd choice coming from an expert who rejects the pathology model of autism (that is to say, rejects the notion that autism is a disease) and considers autistic people the real experts on autism. To me, “person with autism” always sounds like “person with a disease.” But oh well. Moving on.

Prizant rejects the idea that so-called “autistic behaviors” like flapping, rocking, echolalia (repeating words), spinning things, and so on are symptoms that should be extinguished, but instead are coping strategies to help an autistic person deal with an often overwhelming world. I totally agree with this and love that he says it, but I was little mystified that he also rejected the words “stim” and “stimming” for some of those actions. Those words were once part of the language of pathology but, like the word “autistic” itself, are now reclaimed words in the autistic community. I know lots of autistic people who enjoy talking about the joys of stimming. I felt that Prizant should know this if he really does put the experiences of autistic people first in his research.

Similarly, he rejects the word “obsessions” for the deep, specific interests that many autistic people experience. Again I appreciate that he is trying to move away from the language of pathology, but when replacing negative words I wish that he would use the words of autistic people. Instead, he replaces “obsessions” with a word coined by a parent of an autistic child: enthusiasms. Is it me or is that word a little patronizing? Can you imagine praising Nicolas Tesla for his “enthusiasms” in electricity and engineering? (Not saying many autistic people will be the next Tesla, but, y’know.) Most autistic people I know use words like interests, passions, special interests (another reclaimed phrase), or even – sure – obsessions.

There were other moments in this book when I felt that Prizant was sort of benevolently condescending toward autistic people – I won’t comb through and cite them all. It was just something that popped often enough to make this book problematic for me as a piece of advocacy.

And tying that into my larger qualms about both this book and NeuroTribes, as autistic advocate Judy Endow has written, these books by non-autistic authors and experts seem to be necessary to move the conversation on autism forward because the voices of autistic people are largely still not heard, respected, or trusted as sources of information on autism. That’s a problem and it bothers me. Still, I hold hands with allies knowing that we need them to help us make progress. (It reminds me of how Tim Wise talks in White Like Me about how some white people will only listen to truths about racial justice from other white people, like him, when really black people should be the authorities on their own civil rights, but… reality.)

Which brings me to the GOOD things about this book, in case you thought I wasn’t ever going to get there. Uniquely Human is, in essence, a humane way of seeing autism. Being autistic is a valid way of being and the autistic mind is part of human diversity. “Autistic behaviors” are never meaningless, and parents, teachers, and professionals’ jobs are not to eliminate them, but to understand the person behind them. I felt that Prizant was refreshingly bold in his indictment of autism professionals who do not work with the children in their care, but against them. And he was not Pollyannaish in his portrayals of what the lives of autistic people are like; I think in that regard he probably went a step further (in a good way) than Silberman in showing how autistic people face lifelong disabilities, and will need lifelong support in varying ways and degrees. Not all will become Silicon Valley tech geniuses, but all are valuable, because all are human.

As an operating manual for non-autistic people who care for autistic children, this is surely the best book on the market today. For anyone who is raising/teaching/caring for an autistic child, I would recommend you read this book and give it to everyone else in your life who regularly interacts with that child. But, as with NeuroTribes, after you read this I would highly recommend you move on to reading the words of actually autistic people too – you will learn so much. I am working on a new autistic references section of this blog, but in the meantime a few good places to start for parents and caregivers would be PACLA, Respectfully Connected, and We Are Like Your Child.

What Are You Reading? Graphic Memoir Edition

Books

tomboy

 

Image is the cover of Tomboy by Liz Prince: a cartoon drawing of wood background and a blue rectangle similar to a bathroom sign, with the symbol of a female body and a frowning girl’s face. Underneath the symbol are the words “Tomboy: A Graphic Memoir by Liz Prince.”

I love graphic memoirs. I love reading them and I want to write one. I’m totally obsessed with getting my hands on any and all graphic memoirs I can find. Pat Grant, (whose graphic novel Blue I actually didn’t love all that much), has written beautifully on how comics are such a perfect medium for telling the stories of one’s childhood and adolescence – they evoke the language of that era of life, tapping straight into the feelings of youth in a visceral and immediate way. These are a few graphic memoirs that I have loved in the last few months.

(This post contains affiliate links.)

* Tomboy by Liz Prince. This is a delightful memoir that’s so funny and genuine and endearing that I just wanted to give it a big hug. Prince tells an edgy but sweet tale of growing up not feeling like other girls, but also not like a boy – she endures confusion, bullying, and lots of social awkwardness as she tries to find her place in the world and figure out who she really is. As she finds her niche in the world of zines and comic artists and finds other people who both defy gender roles and accept her as she is, she learns that gender is more complicated than just being a boy or a girl, and that’s a good thing. Though this may sound like heavy or academic fare, Prince’s gift is her ability to handle big questions with humor and a down to earth charm. Ultimately this book is just about feeling comfortable with being yourself.

* I Was a Child by Bruce Eric Kaplan. I admit I am stretching the boundaries of the term graphic memoir by including this – it really isn’t one. It’s a memoir with small cartoon illustrations on each page. But I feel like I can shoehorn it in because it’s about the kind of material that graphic memoirists use – the important images and scenes from the author’s childhood – and also because Kaplan is a cartoonist, better known as the New Yorker’s BEK. The stories in this book are incredibly stripped down, raw, visceral – as are the illustrations, which look like someone scribbled them in the dark on the inside of a paperback after waking from a vivid dream. It’s hilarious, it’s weird, it’s uncanny. Definitely my favorite of everything I’ve read so far this year.

Smile by Raina Telgemeier. This graphic memoir geared toward the kid/tween age range is immensely popular, and it’s easy to see why. The drawings are super cute and the story manages to be both unique and highly relatable. In the beginning of the memoir, Raina falls and severely injures her two front teeth, which kicks off a very long series of awful, painful, and embarrassing dental work, right at the time when all kids are pretty much at their peak of self consciousness: middle school. I personally have an extreme fear of dentistry (don’t ask me when’s the last time I went), so this read like a horror novel for me, but the tone is so sweet and funny that it entertained even an odontophobe like me (yes I googled that).

A Game for Swallowsby Zeina Abirached. In a memoir about life during the Lebanese civil war of the 1970s and 80s, Zeina relates the story of a day when her parents go out for a short visit to the other side of Beirut and don’t come home for hours – during that worrying time, her neighbors gather in her apartment to comfort her and her brother, and each other, during the bombing. The artwork and the setting are heavily reminiscent of Persepolis – it’s nearly impossible not to make the comparison immediately – but I think that the tone is markedly different, both in the drawings and the storytelling. Abirached has a style that is whimsical and fairy-tale-like, almost reminding me at times of Tomi de Paola’s children’s books. She gives you a feel for the warmth of Lebanese culture that makes you feel as the children must, cozy and cared for in a safe little nest away from the dangerous world outside.

What Are You Reading? A Little of This, A Little of That

Books

I can’t believe how long it’s been since I last did a book post – apparently my last one was in February, so now I’m playing catch-up.

(This post contains affiliate links: book titles are linked to my Amazon Affiliate ID.)

papertowns

* This Is How You Lose Her by Junot Diaz. A series of short stories centered around the life of Yunior, a Dominican American young man living in Jersey – a womanizer, a cheat, a lover and a fighter, an asshole with a tender core. I found it irresistible the way Diaz played with my sympathy and my revulsion for Yunior, as he loved and lost and lost and lost. The juxtaposition of his depth and insight and loneliness with his shallowness and frequent contempt for women felt honest and real. Of course now I have to go find and read the rest of his work, including the Pulitzer Prize winning novel The Brief Wondrous Life of Oscar Wao.

* A Girl Is a Half-formed Thingby Eimear McBride. A very strange book whose stream of consciousness narration begins in the womb, with a fragmented and grammatically chaotic writing style, following the thoughts of a girl through her terrifying childhood, and through her tumultuous and heartbreaking adolescence. I was not surprised to read that the book was inspired by a reading of James Joyce’s Ulysses, which I haven’t actually read myself but I’m familiar with its style. A lot of people find A Girl is a Half-Formed Thing completely unreadable, and I understand why, though I was compelled to see it through and in the end I did find its story to be haunting and provocative. But I am still pretty baffled by the style of it – MY thoughts aren’t that disjointed and chaotic even at the worst of times, so I am not sure why this was the way to tell this tale, except maybe to distance us a bit from the horror and pain of it. Does that sound like a recommendation? I think few people would enjoy this one, but give it a try if you’re looking for something wildly experimental.

* Paper Townsby John Green. This YA novel is very John Green, so if you like John Green, you’ll like Paper Towns. What I enjoy about Green’s books is how well he captures that particular way that adolescence beautifully straddles self-centered, banal fixations and worries, and the biggest deepest questions about humanity and the meaning of life. I agree with the criticism some have made that all of his male narrators are kind of the same, but I’m not too bothered by that as I see the character as a teenage everyman and that works for me. In relation to his other books – THIS MIGHT BE MILDLY SPOILERY – I liked that Paper Towns did not employ the use of a dramatic tragedy to make its point; it was a little anticlimactic but still satisfying.

*Mud Seasonby Ellen Stimson. A memoir about city-slickers from St. Louis who move to small town Vermont and make themselves over as country folks, with mostly disastrous results. Stimson has a folksy sense of humor that sometimes made my teeth hurt, but she dropped enough F bombs into her tale to keep me going. Though she was self-deprecating and played her many failures for laughs, I couldn’t help cringing at how much she and her family behaved like bulls in a china shop in their new hometown – disrupting their peace with their fancy home renovations, buying the general store and running it into the ground (!!!), taking in farm animals with no clue how to care for them, and all the while looking down her nose at the locals. As a girl raised in a small tourist town myself, I often wanted to shake her silly. But I think it’s a fun read for New Englanders and others who can relate in one way or another.

* The Perks of Being a Wallflowerby Stephen Chbosky. This is an older YA novel, published in 1999 by MTV Books (?! who knew) and later made into a movie, which I haven’t seen but now would like to. I have to say I was deeply confused by this book and did not know what I was meant to make of Charlie, the teenaged narrator. He’s not just a wallflower, he’s extremely quirky at the very least – at times astoundingly immature and clueless, at other times implausibly insightful and mature. I could not decide whether Chbosky was writing a wildly out of tune version of what an adult thinks a high school freshman is like, or perhaps a dead on first person view as an autistic teenager??, though autism was never once mentioned. Near the end, an intimate conversation between Sam and Charlie nearly redeemed the entire book for me. I might have to reread sometime.

What Are You Reading? Offbeat Memoirs Edition

Books

Sometimes themes crop up in my reading list without being consciously planted there – I suppose I get on a jag of being into a thing for a while and sometimes don’t even realize I’m doing it. This bunch of book reviews are creative nonfiction works I read in the last couple of months (there were some novels too, but I’ll save those for another post), all a little different from your straight up memoir. I am sure that these found their way to me because I have been thinking a lot about how I would write my own memoir or autobiographical… something.

(This post contains affiliate links, which is to say, if you want to buy any of these books, click over to Amazon and I’ll get a few cents or whatever.)

* Brown Girl Dreaming (Newbery Honor Book)by Jacqueline Woodson. A memoir written in free verse poetry about growing up African American in South Carolina and New York City in the 60s and 70s; somehow I missed that this was a book of poems when I was reading about it. I tend to read fast and it was uncomfortable at first for me to slow down enough to appreciate the free verse form and the lyricism of Woodson’s writing, but like a long and beautiful ballad it slowly moved me. This is a masterful interweaving of the personal and the cultural, stories across generations and geography; even if you never read poetry (as I never do), you should give it a try.

* The Opposite of Loneliness: Essays and Storiesby Marina Keegan. The story behind this book is that Marina Keegan was a Yale college student who wrote for the Yale Daily News, had a job lined up at the New Yorker, and graduated Yale magna cum laude. Five days later she died in a car accident. The titular essay was written for the Yale paper and ironically speaks of how Keegan is ready to begin the adventure of rest of her life. I was worried that the circumstances of her death and almost too exquisite poignancy of her final essay would spoil my appreciation for her work, specifically that I would find it was only published because of the tragedy. But there’s no doubt that her talent shines through the backstory here – the mix of creative non fiction and fiction in this collection is vibrantly alive, pulsing with the intense feeling of late adolescence in a way that is beguiling and wistfully nostalgic (for an old fart like me).

* Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Lifeby Cynthia Kim. I have enjoyed Kim’s blog Musings of an Aspie for a few months now, so I picked up this memoir of her life as an autistic person who went undiagnosed until she was 42 years old – and, as it says on the tin, this is also something of an instruction manual for people seeking to understand autism better. Though it is undoubtedly useful as a “user manual,” I think it’s also an excellent resource for non-autistic people to learn about and better understand the autistic experience. With somewhere around 2% of the general population being autistic, that’s probably useful information for just about anybody – you could have an autistic family member, friend, or coworker and not even realize it. Kim has a way of explaining autism with clarity and simplicity without grossly oversimplifying things that I think is quite well done.

* Blanketsby Craig Thompson. I don’t even know where to begin with Blankets. If I could translate incoherent fangirl squealing into text, that is what I would put down as my book review. This is a graphic memoir, hundreds of pages thick but since it is image heavy it’s a quick read, about a boy who grows up in an emotionally barren family, falls in love at church camp with another lonely and romantic teenager, loses his religion, and – well, there’s no way to sum up the story that does any justice to the delicate beauty of this book. It’s heartbreaking and wonderful and I almost couldn’t stand it because I loved it so much I wished I’d written it.

* Syllabus: Notes from an Accidental Professorby Lynda Barry. Not exactly a memoir but certainly offbeat, this is a kind of published diary from a college professor who teaches creativity classes. Printed in the form of an embellished Composition Notebook (which her students use for their own journals), it includes her own doodles, some drawings from her students, copies of the various exercises and assigned readings, and is a kind of weird, semi-private musing slash course in how to draw and how to think and how to observe and remember. In a nice bit of serendipity in my life, she specifically recommends one of the short stories in…

* The Boys of My Youthby Jo Ann Beard. Yes, Lynda Barry recommended “The Fourth State of Matter” from this Beard book of stories that I was actually reading at the same time. Highly recommended (and also lent to me) by my friend KristineThe Boys of My Youth is series of short creative non fiction pieces. Her writing is a bit hard to describe, but there is a review blurb on the back that says something like ‘now when people ask what creative non fiction is, I can show them this book,’ which I think is the perfect description! Like the poetry form of Woodson’s novel, Beard’s work grew on me slowly until eventually it took me over. Carefully crafted, often languorous and almost dreamlike, somehow she conveys the immediacy of experience, the richness of emotion, and the fog of memory all at once.

What I Learned From A Week Without Media

Identity

My media brownout is over – one day short, but I’m done. If you missed it the first time or want the full refresher on what the terms of my brownout were, the original post is here. In a nutshell, I avoided watching TV or reading anything – that included books, magazines, blogs, articles, anything – and I kept my Facebook and Twitter use to a bare minimum. I tweeted but did not read my timeline. I updated my Facebook Pages and checked my notifications just to make sure I wasn’t ignoring anyone who needed me but I avoided responding to anything non-essential and did not read my newsfeed.

The purpose of all of this was to stop consuming other people’s words and ideas and focus on producing my own. Perhaps to turn my attention to some things I’ve been wanting to do but haven’t gotten around to.

What I Liked

There were some things I liked about the brownout. I did notice that I felt less distracted, less forgetful, less disorganized, and even in some ways less anxious and depressed – at least for the first few days. I organized the pantry, scrubbed the shower, baked bread, cleaned out some jpegs off the old digital camera.

I played with the kids more, and they definitely liked that – though I think I also snapped at them more because I didn’t get many restorative breaks from playing. I noticed that THEY spent a little less of their time on screen time, which made me realize how subtly my habits affect them, even though I always thought I was just sneaking away to Facebook when they were otherwise occupied.

I did some more writing and drawing than I usually do, though that was partly out of sheer boredom and lack of anything else to do. I got around to some little creative projects I’d wanted to do, like 4 minute daily diaries inspired by Lynda Barry’s Syllabus: Notes from an Accidental Professor.

What I Disliked

On the other hand, there was a lot about this experiment that I disliked. I felt like I was working all the time, because when I wasn’t taking care of other people or the house or my chores, I was writing and drawing. And even though I like writing and drawing, it feels like work. Work that I enjoy, but still work. None of the usual “treats” that I give myself for a hard day’s work were available, I was bored a lot, I ate more, and eventually the daily stress with no outlets really wore on me.

It felt wrong to be totally disengaged from the rest of the world. It seemed selfish and ridiculous to just shout my thoughts into the void without engaging in conversations online. I missed out on things that were actually important even if they were “just” on Facebook – sometimes when stopping in to check notifications I would see a friend having a problem and feel so guilty for not answering their call for support. If I hadn’t cheated I would have missed a pregnancy announcement, a marriage engagement, my brother’s girlfriend’s birthday, and who knows what else!

The thing about social media is it’s called social for a reason. I hated turning my back on it completely. My friends on Facebook and in the blogs I read are not just noise, they’re real people that I care about.

Jonesing

The Hardest Part

I think the hardest part of the day for me was the very end of the day when the kids were asleep and I sat down to relax with Mike. There was no pot of gold waiting for me at 10pm – just more writing, or bed. I did try going to bed earlier, but that didn’t mean I slept better.

Not reading at all was just sad and depressing. I missed my books. Friends would talk about books, Instagram pictures of books, even LEND me books, and I felt like an alcoholic trying to drink a soda water at the bar. It was just terrible. If I am addicted to reading, that’s an addiction I can live with. If anything, taking a break from reading made me appreciate reading even more. A life without words is no life for me.

What did I learn?

I did not feel like the brownout enhanced my creativity directly. Already by the end of the third day I felt like my well was running dry. To me, taking in other people’s ideas is part of the creative process. Other people’s writing stirs up memories and ideas; without them, I stagnated. The brownout did, however, free up time for me to write and draw more, and I think that having a more organized space indirectly made me feel more creative.

I noticed, by not being on my phone for all the little boring waiting-around moments of the day, how much everyone else is on their phones. I felt a little smug and annoyed but also very aware that I was partly just jealous and would be doing the same if I could – like being a pregnant lady or designed driver at a drunken party. I think a lot of people fantasize about disconnecting from the internet, but it hit me that in 2015 that means disconnecting from the world we live in, and that’s pretty unavoidable.

I learned that being on Facebook for much of the day definitely has negative effects for me. It makes me more distracted and spacey, I get less done, I have less energy, and I think that being connected to other people’s problems for too many hours a day made me feel depressed. I liked how it felt to be off Facebook all day – but I didn’t like NEVER being there. So I think I will just go on Facebook at night from now on.

My New Plan

In a general sense, I found a media rhythm to my days that felt natural. When my options were severely limited, I could think more clearly about how I really wanted to spend my time. Here’s what I came up with:

In the morning I think it’s good to be available as much as I can. Of course I check email every morning just in case there is something time sensitive and/or work related. I have breakfast with the kids, play with them, and write when they don’t need me, since I tend to have the most creative energy before noon. I putter around the house a bit, do some chores and some little projects if I have any. We go out if we have somewhere to go or something to do.

In late afternoon when the kids are usually vegging out by themselves, I need downtime. I’ll stay off Facebook still, but it would be a good time to read blogs and books.

I figure after 6pm going on social media is fine. Sometimes I like to write, or read blogs, or if I’m just beat I can look at Facebook.

There always comes a point just before bedtime when I am done with everything and the only thing I want to do, until the kids are ready to actually get in bed, is read a book. And that is what I will do, just as I always used to. This time sucked during my brownout – I usually just sat and stared into space, not thinking about anything.

After the kids are in bed, it’s my time with Mike. That can include TV time, since I did not feel like we had an awesome time without it! We are usually too tired to have scintillating conversations at 10pm, and you can’t do that other thing every single night (well, we can’t). It’s fun to enjoy TV together.

My time after that, if I’m not quite ready to sleep, is mine. Facebook, reading, TV, mine mine mine. I don’t feel bad about that one bit. Going to bed listening to white noise was sad and dreary. I didn’t sleep better and I hated it!

Youwantme

Would I recommend a brownout?

Do I think you should try this? Yes, with caveats. I definitely did not think I needed a FULL week to get what I needed to get out of the experiment. I started writing this wrap-up post on Day 4 and finished it on Day 5. On Day 6 I was really starting to reach my limits, and cheating more and more. I cheated to watch the Superbowl with Mike, which was fun, and after that it was over for me.

I don’t think that I got much out of not reading books. I guess it probably would have been less effective if I had simply filled up my day with MORE reading than I normally do, and continued to exist in a state of semi-distraction all day and night long. So if you can avoid doing that, I see no need to stop reading. It did not give me more creative ideas or energy and if anything did the opposite.

I think it’s worthwhile to give up Facebook and Twitter entirely for a short period of time, maybe a few days. It gives you a better sense of how much time you do want to spend on them, which almost certainly won’t be NEVER, but probably not as much as you were before.

As for TV, meh… that depends on your TV habits. If you feel you watch too much, try giving it up for a few days. I didn’t think I watched too much before and I still don’t.

If you do try this, please holler at me in some way – on Facebook or Twitter or in comments here – to let me know how it goes! I would love to hear about what you got out of your media brownout.

Media Brownout?

Books, Identity

I’m reading a classic book about unlocking your creativity – it’s called The Artist’s Way by Julia Cameron. The format is a 12 week long course with some reading from the book and a number of exercises that are supposed to help you “unblock” your artistic ability. Since starting the course, I have been writing three longhand pages of free writing each morning, taking myself on one “artist date” a week (if I can manage it) (the “date” just means going out ALONE and treating myself to a nice time), and doing many of the thinking/writing exercises.

For week four, Julia has asked me to take a break from consuming media. Her book predates the Internet, so she doesn’t mention it, but I think it’s safe to say she would include that in her prescription, in addition to taking a week off from watching TV, and also…

Reading.

She knows that the break from reading is shocking. She claims that blocked artists tend to be addicted to reading because it helps them stuff down their own creativity. I don’t know about that. If that’s true, I’ve been a blocked artist since I learned to read. I LOVE reading. I love books. Reading is like breathing to me. I MIGHT DIE.

Also, I’m kind of resentful slash dubious about the idea of a media break for myself, because without Internet, TV, or books, what kind of downtime am I going to get? That’s pretty much all I’ve got going on as far as relaxation and me time. Julia thinks that if we aren’t reading and watching the tubes we’re finally going to get to all those hobbies we’ve been meaning to try. Uhhhh, look, Julia. I am not running out to taking surfing lessons any time soon.

I’m a little unsure about the whole Artist’s Way endeavor, really, because I’m not so convinced that I AM a blocked artist. I feel pretty in touch with my creativity. What is preventing me from creating more than I do is a little thing called parenting. And I’m not about to give that up.

Still, I’m trying out the course, albeit slightly tailored to the demands of my current lifestyle. I have to admit that I have noticed an eerie synchronicity between some of the stages she talks about and things that are actually happening to me. The emotional phases, the vivid dreams, etc.

media

My weeks for the course run from Tuesday to Tuesday, so I started yesterday. Here are the terms of my brownout, tentatively so far. I put a question mark in my post title because I am not at all certain I’m going to stick with this for a week. Also, sad but true: if I can’t read OR watch TV on my phone, I really have no idea how I’m going to fall asleep. I haven’t done that probably since I was a toddler.

Facebook. I’m off my personal Facebook feed for the week. I can still get messages to my Messenger app, and I have the Pages app to monitor the Pages for my blogs and other projects (uhhh I have a few!). I’m permitting myself to scan my notifications just to make sure I am not tagged in anything urgent – but no responding unless it’s truly urgent!

Twitter. I’m tweeting here and there and responding to tweets (again, I count this as necessary blogger presence). I’m not reading my feed. I don’t look at Twitter all that much anyway so it’s no big sacrifice.

Blogs. I am writing blog posts (obviously), since I think that can be counted as creative work! I am going to take the week off reading blogs. I feel a little guilty about it, seems selfish of me to ask people to read mine when I’m not reading theirs, but I’ll catch up at week’s end.

Instagram. I haven’t been using Instagram that much and I don’t spend much time on it when I do, so I’m keeping it on my okay list. If only to record the events of the week.

Pinterest. I use Pinterest so seldom that I almost forgot to put it in the list. Meh.

TV. I am giving myself a husband loophole here. We usually watch ONE show together after the kids are asleep. I know there are other things we could do, but we are usually pretty fried by 10 pm. If we don’t watch any shows all week, what’s going to happen is he is going to surf social media while I stare at the walls, or… take up knitting in silence? Maybe I could sit and write. Hm. That might work.

Music. Julia does not forbid music, which gets the side eye from me, because what if I were a blocked musician? I’m not, though, so music stays.

Books. I… guess I will try this. I’m not happy about it. I might quit. I’m mostly just curious to see if I can do it and if I will magically start writing a novel if I don’t have any stories coming in to my brain for a week. It might even be good timing since I am not currently reading any library books, BUT I just had a hold come in on a book I’ve been waiting for for months. I might be able to read it in a week after my brownout is over. I won’t give up reading to the kids.

This post contains affiliate links.

What Are You Reading?

Books

This batch of reviews is a weird mix of YA fiction and spiritual nonfiction. Guess that’s where I’m at right now! Adding a note at the top to tell you that if you really want to delve into a delicious smorgasbord of book reviews, my friend Kristine is doing her annual 12 Days of Christmas review at The Suburban Prairie, and this year she’s individually reviewing ALL of the books she read in 2014! Loving it!

* Unspoken (The Lynburn Legacy Book 1) by Sarah Rees Brennan. This was the last pick for the Curtain and Pen online book club – a supernatural-themed YA novel, first in a trilogy. Set in a small town in England called Sorry-in-the-Vale, the story follows a high school girl named Kami as she sets about unraveling the mysteries of her home town, the strange Lynburn family who seem to hold some inexplicable power over the residents, and her own paranormal connection to a boy named Jared. The characters in this were maybe a little cartoonish, but felt original and appealing. Brennan did a great job of maintaining suspense about various plot lines while still creating twists that seemed logical. I found the relationship between Kami and Jared to be the most interesting storyline and the cliffhanger absolutely shocked me. I have the next book lined up in my reading queue. Also, Brennan was interacting with us on Twitter during our book club discussion – she is an active and friendly tweeter!

* Hand Wash Cold: Care Instructions for an Ordinary Life by Karen Maezen Miller. I love Karen Maezen Miller for the way she shows readers that ordinary life not only can be, but is, a spiritual practice. Her book about motherhood, Momma Zen: Walking the Crooked Path of Motherhood, is one of my favorite books ever and one of the few books I have read more than once. In this one she writes more about her personal life, her path toward Buddhism, the messy years when she was lost and lonely and what she learned along the way. Miller has a lovely, relatable way of explaining that we are all messy and lost and lonely and that’s all right. We are right where we are supposed to be. This is not a set of steps to follow to attain enlightenment – if only it were so simple, as the title playfully teases. There were many times during the book when I thought, okay, I think I’ve got it, do I need to keep reading? but then I would and be surprised once again by another simple and beautiful truth. Highly recommend.

* Raging Star (Dust Lands) by Moira Young. I can’t seem to stop reading YA trilogies, even though they always seem to disappoint in the end. I still really like the central character of Saba, because she is believably flawed, selfish, romantic, a risk taker, a little confused. The trouble is, this last book also felt confused to me. A lot of threads were left dangling in the emotional storyline, though the plot was tied up pretty neatly. Some of the characters did things that just didn’t make a lot of sense to me – DeMalo and Jack both seemed rather baffling in this installment – and others who intrigued me never really went anywhere – like Auriel Tai and Emmi. I am not sure whether to recommend this series or not; I still think the first book was great, and so after you read that you might as well read the rest, but prepare to end on a huh?

* Living with a Wild God: A Nonbeliever’s Search for the Truth about Everything by Barbara Ehrenreich. This book KNOCKED MY SOCKS OFF. I actually feel like writing the entire review in caps lock. I have loved Ehrenreich for years – ever since her 2002 book Nickel and Dimed: On (Not) Getting By in America, in which she investigated and wrote about the lives of the working poor by living and working alongside them – and I’ve read everything she’s written. So when I heard that her new book was a personal memoir about her adolescence, atheism, and grappling with the meaning of life, I was practically salivating to get my hands on it. I almost could not make it through this book because after every page I wanted to throw it down and scream with excitement; you see, I could relate so closely to her teenage ponderings it was rocking my world to realize that there was someone out there who was as strange as me at age 15. When I was finally done I went back to my old journals, some of which I’ve kept in digital form, and found several things that were similar to what Ehrenreich had described (though certainly she was a far better and more intelligent writer). I will say, though, that even though I ADORE this book, it’s a weird one and I can see why many people will just find it too odd to love.