What Autism Safety Really Means

ableism, Autism, Disability, Education, Infographics, Writing

Last month I participated in a panel discussion on the topic of Autism Safety at a conference hosted by a local autism organization.

The two hottest takes when it comes to “Autism Safety” – in the “autism community,” that is – always seem to be wandering/elopement and police interactions.

Elopement or wandering refer to the problem of autistic children (not always children, but almost always) who run off unattended, often leaving an enclosed space like their home or school. And, as a parent myself, I do understand this worry – to an extent. Naturally the idea of one’s child getting lost and/or getting into dangerous situations takes one’s breath away to even imagine.

But in the grand scheme of an autistic life, how pressing is this issue really? Parent-led organizations sometimes run scary stories about the dangers of elopement. Recent studies have shown that about half of autistic children elope at least once, and half of those elope long enough to cause serious concern. That does sound worrying, but let’s keep this number in mind and I’ll return to it in a moment: 25% of autistic children have significant elopement incidents. Other factors to keep in mind: most of those children are nonverbal, and elopement peaks at age 5.

The other hot topic in safety is about police interactions. And while I whole heartedly agree that this is a key safety issues for autistic people, I find the ways that autism parent communities and neurotypical-led organizations discuss this issue tend to be highly problematic: most notably, that they ignore the racial issues at the heart of the danger. Skirting the autism-race interaction in conversations about police and first responders not only makes our conversations about safety incomplete, it also makes our proposed solutions severely inadequate at best.

What the parent community’s hot safety takes amount to tends to be a clamor for more neurotypical (NT) control over autistic people. Wandering? Police interaction? For NT parents and experts, the solutions are about GPS tracking devices, autism registrations, and more compliance training for autistics.

These solutions themselves are indicators of racial erasure. I think anyone who pauses for even one minutes to consider how those solutions might work for a black or brown autistic person could see how deeply flawed they are. How would a black family in America be affected by being in an autism registry or GPS service with their local police department? What kinds of issues might arise for a population that is already at risk of being racially profiled? What is the likelihood they would sign up for this voluntarily, given the downsides? Can you imagine a black autistic parent, or a Latinx immigrant family, being willing to be on such a registry?

And where to even begin with pushing more compliance training on non-white autistics. How well has compliance worked for black Americans historically in this country, when it comes to keeping them safe in police interactions? Eric Garner said it best: I can’t breathe.

My presentation on Autism Safety to my local community was cut short, as the moderator verbally nudged me to move on from the topic of safety – they mostly wanted me to list my credentials as a “self-advocate” and then sit down.

What I wanted to tell them is that NT parent/expert control of autistic people, stripping us of autonomy, and ramping up compliance training, all compound the most serious dangers we face in our lives. When parents, teachers, and autism “experts” have tunnel vision that focuses on autism itself as our main threat, they actively endanger us. I understand why they are reluctant to look at the real safety issues we face, because many of those issues are coming from them.

I’ll remind you now of the figure above that told us 25% of autistic children have seriously concerning elopement incidents, peaking at age 5.

Now let me tell you about what Autism Safety really means:

Abuse and Violence
  • Disabled children are 3.5 times more likely to be abused or neglected than non-disabled children
  • Disabled people are 3 times more likely to be victims of serious crime than non-disabled people
  •  Exact figures are unknown, but numerous studies have estimated that the number of people killed in police interactions who were disabled is at least 50%, and likely much higher as these calculations under-count people with psychiatric disabilities
  • Black people are nearly 3 times as likely to be killed by police than white people; therefore, we MUST include racial issues in addressing autism safety with law enforcement
Psychological Effects
  • 70% of autistic people also have a psychiatric disability such as depression or anxiety
  • 30-50% of autistic people have reported having suicidal thoughts or attempts
Bullying
  • 60-80% of autistic students report being bullied at school
  • 40% of parents of autistic students report their children were bullied
  • 22% of those who were bullied report being bullied all the time”
Restraint & Seclusion
  • While only 12% of public school students are disabled (covered by IDEA), 75% of students restrained at school are disabled and 58% of students secluded and isolated at school are disabled.
  • 25% of arrests and referrals to police are disabled students – that means a disabled student is twice as likely to be arrested for a disciplinary incident at school.
  • Federal data shows public schools reported 163,000 incidents of students being restrained in one school year.
  • 40% of students restrained at school are autistic
  • 50% of students secluded/isolated at school are autistic
  • Of the disabled student population, only 19% are black, but they make up 36% of those who are restrained and secluded – this means that among disabled students, black children are twice as likely to be restrained and secluded
  • 7,600 of the incidents of restraint involved mechanical restraints (i.e. not restrained merely with school staff’s hands/arms)
  • Students were secluded in scream rooms” 104,000 times in that school year
  • 20 public school students died while being restrained at school between 1988-2008
  • In many states (including mine), there are no legal restrictions on the use of restraint and seclusion in schools

Many of these risks to autistic children are much more prevalent and dangerous than the risk of elopement, and many continue to affect autistic people throughout our lives – as our high rates of depression and anxiety show. And yet, these are the dangers that are rarely discussed by parents and autism organizations. These risks do not seem to inspire as many panel discussions, safety curricula, training sessions, and special safety programs. Perhaps because, by and large, they require change on the parts of the everyone else but the autistic child.

Even more crucially, the parent/expert safety programs that are most popular – the GPS trackers, registries, and compliance training – actually put autistic people at greater risk to our real threats: abuse, victimization, discrimination, isolation, and psychological trauma. Trackers, registries, and compliance make us LESS SAFE. Worst of all, they will have the strongest negative effects on the segment of the autistic population that is already the most vulnerable – you know, the ones we never talk about? – those of us who are not white.

Of course we can’t wait around for mainstream culture to protect us, so here are some safety tips you can really use. And please see my Autism Safety PDF for more information and sources for all of the above statistics.

SAFETY TIPS
  • For Autistic People:
    • learn how to recognize and report abuse
    • learn what to do if you or someone you know is feeling suicidal
    • learn how to avoid interactions with law enforcement
    • advocate for community change that lessens the frequency of interactions with LE, and the risks of violence during interactions with LE
    • learn what to do if you get lost or need help in public spaces
  • For Families: 
    • learn to recognize and respond to signs of abuse, neglect, and bullying
    • learn strategies to reduce the risk of LE involvement and violence
    • learn to recognize and respond when someone you love feels suicidal
    • teach your loved one survival skills, including a safety plan for getting lost 
  • extra tip: medical ID bracelets are safer than ID cards or registries!
Image is a photo of a pair of dice, with text: Despite the eminent fairness of the rules, some of the players claimed to be at a disadvantage. Everyone began with the same amount of cash and had an equal opportunity to win the game each month, so if a player lost it was surely a lack of skill and perhaps a bit of bad luck? - "The Monopoly Game," erinhuman.com

The Monopoly Game

Writing
There once was a town whose bylaws required that the residents play a game: an ancient board game called Monopoly. Since the townspeople were all descended from four families, one representative from each family played the game on their family group’s behalf once per month. And since, as per the laws of the town, each family representative had always played with the same game piece, their clans had come to be known by the names of their assigned tokens. Thus, the town was made up of the Top Hats, the Boots, the Thimbles, and the Irons. 

 

At each monthly game, no matter what had happened the previous month, the players began with a fresh start. All started from the same point on the board with an equal distribution of cash, in the interest of fairness, naturally. Everyone played by the same basic rules, one turn per player, unless the player rolled doubles and could move twice, and so on. This was satisfactory to the players, as reported in the monthly Monopoly Review, published by the Top Hat family for all the townspeople to read and follow the progress of the games.

 

However, there were complaints, improbably enough. Despite the eminent fairness of the rules, some of the players claimed to be at a disadvantage. The Top Hats politely pointed out that everyone began with the same amount of cash and had an equal opportunity to win the game each month, so if a player lost it was surely a lack of skill and perhaps a bit of bad luck?

 

The Boot clan, it seemed, was especially upset. In fact they insisted the game was quite unfair: while it was true that everyone started with the same amount of cash, it was also true that the Top Hats always began with Illinois Avenue, B&O Railroad, and a house on Tennessee. What’s more, the Top Hats also had two Get Out of Jail Free cards at the start of every game!

 

The Thimbles and the Irons both chimed in that they felt disadvantaged by having to buy into each game with a payment of $200 to even begin it, despite being required by law to play in the first place, lest they be cast out of town.

 

Alas, the Top Hat clan felt much abused by all the griping among the other players. Again they had to stress that all of the conditions of the game were written into the very rules since the founding of the town that couldn’t be helped. And at any rate, they didn’t agree at all that their clan had an advantage. Anyone at all could buy and sell and win the game, beginning as they had with a fresh slate of equal cash and starting points on the board. If the Boots were so concerned about Illinois Avenue, why, they could make an offer! The Top Hats would be happy to sell, at the right price.

 

Sure, the Top Hats had won every game for as long as the Monopoly Review had been published, but that was because they simply were better, and tried harder. Perhaps if the Boots or Thimbles or Irons spent as much time studying up on the game and improving their strategies as they did moaning and groaning about whether the rules were fair, they could win a few.

 

The other players refused to concede. It was high time, they said, the rules of the game were changed. Everyone knew that the Top Hat family had written the rules in the first place. In fact it was said that the inventor of the Monopoly game, the one who included in the town bylaws that it must be played as a requirement for town residency, was the original Top Hat! The Boots suggested they should start the game with the cash equivalent of the Top Hats’ starting property value. The Thimbles proposed that they begin the game on credit and pay their clan’s buy-in only after they passed GO. The Irons went further and requested their buy-in be eliminated outright.

 

Now the Top Hats were quite offended. There was no need to change the rules, as the rules were entirely fair, and anyway, they were essential to the design of the game, built in for important reasons, by the game’s original inventor. Why should the Boots or Thimbles or Irons get special advantages, just because they kept losing? Why should the Top Hat member playing this month be punished and set back from his usual place, when he’d had nothing to do with writing the rules? He was only playing by them like everyone else, and so should the other players. And in the end, they couldn’t change the rules of the game unless the Top Hat clan agreed to the changes, so that was that.

 

Tensions rose and rose in the town. I’m sorry to say things got quite ugly at some of the games, as was reported in the monthly news bulletin published by the Top Hats. The Monopoly Review ran stories of Iron players cheating, Thimbles throwing a game to make a point, once or twice a Boots player even attempted to overturn the board. The Top Hats in town were horrified. They could see something had to be done, but none could agree on what to do.

 

Many Top Hats decided to be nicer to the other clans perhaps especially the Boots, as they seemed so aggrieved. Some Top Hats even came to games and cheered on the other teams, to boost their morale. Yet none of them, Boots, Thimbles, nor Irons, seemed to appreciate the kindness and sympathy of the Top Hats cheering for them; perhaps, the Top Hats wondered sadly, the others were simply poor sports after all.

 

A few Top Hats considered some concessions to the other players’ grievances; some conciliatory measures that would mend hurt feelings. Maybe they should give the Boots some extra cash to start the game not the full equivalent of the Top Hat properties, that would be too extravagant and punish the current Top Hat player unfairly but $100 or so, perhaps. A few Top Hats thought they should adopt the Thimble idea of letting them play on credit until they passed go. The main thing, of course, was they had to work with the game they had, maintaining order by making only minor tweaks. It wouldn’t do to punish the Top Hats of today for the original Top Hat’s lack of foresight. 

 

But still others in the Top Hat clan felt emphatically that enough was enough; the other players had shown themselves time and again to be not only losers, but poor sports, and if they couldn’t play by the rules, they would simply have to go. In the meantime, one thing was for sure there would be stricter security measures at all Monopoly games from now on. 

 

Dear readers, I’m afraid I have misled you if I have told this story in such a way that you were expecting a tidy resolution, a moral perhaps… or indeed any resolution at all. The truth is, the ending of this story has not yet been written. 

‘Cognitive Dissonance’ at NeuroQueer

Autism, Books, Neurodiversity, Writing

NeuroQueer is a very cool online journal whose editors are some of my personal heroes and favorite bloggers, so I’m honored and excited that they have published my review of In A Different Key: The Story of Autism by John Donvan and Caren Zucker. Many thanks to the wonderful Ibby Grace for making it happen!

***

The press release for In A Different Key : The Story of Autism by John Donvan and Caren Zucker says that this book was “written by two journalists personally committed to widening respect, understanding, and support for the loved ones in their families – and in every family touched by autism.” I want you to keep that sentence in mind as you read my review. I want you to note that the supposed object of this widened respect is the autistic person, and remember that as you read on.

In the preface the authors lay out the premise that this book will be about parents, and that “their two main goals – to find out why their children have autism and to make it go away – remain unfulfilled.” 

I Dreamed of a House

Autism, Identity, Neurodiversity, Writing

Dust particles catch the light, forming a glittering beam that looks solid, spearing the front door through its little square windows and ending in blocks of sun on the rug where we put our shoes. I turn to look outside and press my nose to the top middle pane of the window, touch my lips to the dark wooden sash. The wood always smells like rain and the rain always smells like this window. But it’s not raining now. It’s that time when the sun gets really yellow and loud, and you can’t watch TV because there’s too much glare even if you try to close the long green curtains.

I slide down into the couch and try to arrange myself so I’m sitting upside down, my legs up on the back of it, and my head hanging off the seat. When I’m sitting upside down I look at the ceiling and pretend it’s the floor. The living room ceiling has dark wooden beams across it, and I imagine hopping over them as I run across the room. After a while it starts to feel real, that I really live on the ceiling, and can walk from room to room on all the ceilings and see the whole house from there, looking down, or is it up, at all the furniture, and I start to wonder if I could ever invent suction boots that would let me walk up the walls and right over the ceilings for real. And then I am sad.

I once had a recurring dream about a house. It began in my teens and lasted through the next 20 years; every few months I’d have more or less this same dream: I am in a house, it’s my house but not like my house. I discover that there is space in this house that was always there but I never knew of it before. A secret wing, an attic, a basement – the space is vast, larger than seems possible for a room to be and still be part of my house. Finding this place is exciting and important, the key to everything. I wake feeling that a mystery has been revealed in my sleep, but forgotten as the dream fades.

Around the time I realized I was autistic, I stopped having that dream.

One question people ask when you identify as autistic in adulthood is, why find out now? What difference can it make at this point in your life? The answer is that it makes all the difference, for many reasons. For me it is hard to understand why anyone wouldn’t want to know themselves, but I know for some autistic adults this self discovery isn’t as important, and that’s fine for them.

But there’s also the reality that I can’t wear this old costume anymore. It’s coming apart at the seams and bits of the real me are sticking out here and there, anyway. Since my schoolgirl days people have always commented on my rigid posture, the way I pace when everyone is standing, the way I stand when everyone is sitting, the way when I finally sit down I sit at the edges of chairs, my hands tightly clasped or shoved under my thighs or balled into fists. “Hey, relax,” I’ve been told with a chuckle, too many times to count. “Sit down, you’re making me nervous.” I insist tersely, “I’m fine,” not even realizing. Every atom of my body holding tightly together to muscle my way through it all.

The easy part of it is surprisingly hard, and that’s finding out who I am now. What are my sensory processing differences? One would think that this would be obvious, but when you have lived a few decades not knowing that your perceptions of things are different from anyone else’s – assuming your reactions and responses to everything must simply be wrong – you end up having suppressed not only your reactions to stimuli but also your perceptions. Uncovering these is like unearthing a time capsule, from a time that never was – a time when I was truly myself, when I spoke, moved, felt, and thought with freedom.

Uncovering the natural movements of your own body is uncanny and startling. A lot of autistic people flap their hands when excited or agitated. I don’t flap. Until one day I read a disturbing news story, set down my phone and find myself flapping. And it feels familiar to do this. But where did this come from? It’s not as though I’ve gone looking for ways to act more autistic. By clearing away the dirt and detritus of a life lived trying to be someone else, by peeling away the layers of people that I tried to be, things emerge, unexpectedly.

I had a dream in my adolescence that I was a mummy. I walked down to the water near my house, trying to hide from passing cars in the night. I knelt at the water and tried to tear away the waxy bandages covering my body. But when I did, I found that my heart was exposed, red and beating in my chest. I was afraid. 

Image is a red brick wall with the text: First I must reassemble the foundational building blocks of my world. eisforerin

The hard part of this is disorienting and feels impossible at times: piecing it all together, trying to form a coherent life story for myself. Who I am now is just a moment. It seems important to reassemble the narrative, with this new information. The clues I have are few, because of the way the old stories I told myself distorted reality, and because of the way I’ve simply forgotten the rest, whether by will or by an inability to make sense of it – my brain refusing to allow long term storage to the incomprehensible – I cannot say. Sense memories are the memories that float up when I go dredging up the past, as if to reconstruct my very experience of the world. Feelings come to me – fear, anger, sadness, joy. I want anecdotes, but memory tells me – no. First you must reassemble the foundational building blocks of your world. This is what the sun felt like, this is how the water smelled, these are the sounds that filled the atmosphere.

I have my own bedroom at the back of the house, for a while anyway. The oak trees grow tall at this corner of the property and so it is always shady in the daytime and filled with the sounds of leaves rustling. In summer with the windows thrown open at night, fat junebugs hurl themselves at the screens while I try to fall asleep with a lamp left on, reading in bed. I have a pine wood desk with a tidy desk blotter that makes me feel like it is a real person’s desk where real work is done. I have stationery I use to write to my pen pals, eight pals at once at the peak of my correspondence – my online friends before there was an online. Later in that room I am a teenager and my parents have bought me a brand new oak wardrobe, a beautiful piece of furniture that makes me feel like a real person with a real place to keep my clothing. But one morning before school I have so much trouble trying to choose what to wear that day that I cry in a rage and slam all the doors open and closed and open until one of them cracks, badly, along one rail. I stop. I never tell anyone that I did this. I am ashamed.

Finding other people out there like you when you thought you were the only person like you is also strange, both unsettling and beautiful. When I was a child, I loved the story of the ugly duckling. The ugly duckling, of course, is not ugly at all, but is a cygnet born into the wrong world. Abused by the other animals in the barnyard for looking and behaving “wrong,” he flees the farm and seeks solace in other places, but is repeatedly repelled or put in danger from which he must again run away. He spends a season alone, and in his despair, he finally throws himself before a group of swans, expecting and even willing himself to be killed – but at the same moment, he glimpses for the first time his reflection in the water, and the swans accept him as one of them.

Since I realized I was autistic, I started to have a new recurring dream about a house.

I’m in a house, it’s not mine but it’s one that I have stayed in or am staying in and I’ve fallen in love with it. It’s unconventionally designed, rambling, even vast, with lots of surprising turns and hidden hallways. Each room is unique, quirky, with its own vibrant personality. Other people live here – some of them known to me, some not. They each have claimed their own space, but there are still rooms available. There are multiple kitchens and a huge backyard. Sometimes I am showing this house that I love to other people, showing off its charms. Sometimes I am exploring it alone. I think about moving in, but I hesitate. I love it, but can I live here?

And then I am walking through the house with my husband. We are planning out where the children could stay, how we could make this place safe for them. There is a realtor there, waiting for our decision. We tell him: we’ll take it.

And that’s the last time that I dreamed of a house.

The Question of Parental Oversharing

Parenting, Writing

As my kids have grown out of infancy, I’ve thought more and more about where the boundaries are around what I share here on my blog and on other forms of social media. I think about it quite a lot, and I’ve wanted to write about it many times, but I have backed off every time in fear of being too judgmental of other parents. I don’t want to add to all the noise in social media about how parents aren’t doing this or that right – I know intimately how completely overwhelming and crazymaking that can be when it reaches a certain pitch.

So this is not an advice column  – more of an invitation to work through this question with me, because it can be pretty tricky and confusing. How much is okay to share when it comes to our children? When it comes to photos, anecdotes, funny moments, hard moments, and when it comes to asking for advice or support?

I like to write about my life (obviously) and I’m not one to bemoan the evils of social media too much. I am an autistic parent, which means that most like parents, I have a need to connect with other adults who share similar interests and experiences, but like most autistics (and introverts, for that matter), I have a limited amount of energy to socialize in person or on the phone (actually I have NO energy to socialize on the phone and would rather stab myself repeatedly in the eyes with a fork thank you very much). So for me, Facebook and Twitter and blogging are pretty much the best things since sliced bread.

My kids are a big part of my life of course, and I’m with them almost all day almost every day. They take up a lot of my headspace. I love them and think they things they say and do are interesting and amusing. It’s natural for me to want to share some of that as I write about my days, I think, but the older they get they more I become aware that their stories are not mine to tell. So more and more lately I am trying to zero in on the incredibly fine line between writing about my life as their parent, and not writing about their lives as individuals who have a right to privacy but do not actually know what the internet even IS yet besides an endless fount of cool videos.

When I think back on my childhood, my parents are part of my story, an integral part, a shaping influence, but they aren’t the main characters. I am. And my kids are the main characters in their own stories, not supporting actors in mine.

So if you have noticed that I’ve been writing less and less about them here on my blog, it’s not just because my autism diagnosis has provided me with a lot of non-kid-related material, but also because I am deliberately moving away from oversharing.  

Image is a faded cartoon line drawing of a tree, a child, and a dog. Over that are printed blocky letters that say “My kids are the main characters in their own stories, not supporting actors in mine.”

I suppose “Mommy Blogging” seemed less problematic to me when the kids were babies. New parents are on a steep learning curve. I know that I was quite frantic at times to reach out and ask whether I was doing anything at all right! And since babies pretty much all do more or less the same things (eat, sleep, cry, poop), I don’t think anyone’s child will mortified to learn that his mom once asked whether the consistency of his poop was normal. Hey, we all wondered about that at some point. And all babies poop. They aren’t terribly private about it either, I’ll tell you what.

I don’t know when exactly they change over from Everybaby to little tiny people, but they definitely do. And then all the questions begin. What is okay to share? What isn’t?

The business of protecting privacy while sharing our lives is so complicated and multilayered. I have been developing a rather convoluted system of levels of privacy. I share pics of the kids on Instagram, but I monitor who is following me. I don’t share kid pics on Twitter. I do share some funny kid stuff on Twitter but without using their names. I share photos of the kids on Facebook a little less than on Instagram, and I do share funny or cute stuff about them with their names. But I also have some different friends lists for different levels of intimacy. I do share photos and names and some anecdotes here on my blog, but honestly I’m becoming less and less comfortable with that stuff and thinking about how to move away from that while still writing about being a parent.

Sometimes I wonder if I will lose followers who came here for cute kid stories and are getting bored of hearing about sensory issues or social justice or whatever else is on my mind. But hey, it’s my blog.

I do still like to read about other people’s family lives though, is the funny thing. Other people have come up with other solutions to this privacy issue, like blogging under pseudonyms. I decided a few years ago not to be pseudonymous here because this body of work is important to me and I want to have my name on it. Some people make their blogs private, another good strategy, but I didn’t do that for the same reason cited above. Perhaps I could have invented names for the kids, but that would probably be a flimsy wall to climb if anyone wanted to find them.

I like the idea of asking the kids’ permission to write about them, and probably will someday, but they aren’t old enough yet to understand what writing on the internet means. When I do write about my children, I try to keep in my mind the idea of them someday reading this. Or of their friends someday reading this. Or of their boss someday googling them and finding this. I never want them to feel embarrassed or as though I made their lives all about me. Though I would be happy for them to someday read this and know that I respected them, was proud of them, and felt privileged to stay home with them. I know I have not always managed this well, but I’m trying very hard to do better.

On Conquering Creative Fear

Creativity, Writing

Erin5two

When I was a little kid, probably only five or six as I was just beginning to be ready to sleep over at a friend’s house (and for sure there were some midnight calls home to my parents to come get me), the prospect of a sleepover with my best friend and next door neighbor Bethany was pretty much the most exciting thing I could think of. Whenever Beth or I would come up with the plan to have another sleepover, the very idea of it was so thrilling it was almost too painfully awesome to contemplate (even though we spent almost every day together and lived about 40 yards away from each other).

But sometimes our parents said no, for reasons incomprehensible to our kindergarten minds. Then, the disappointment was too devastating to bear (even though we spent almost every day together etc). So I came up with a plan: we would always just assume the answer was going to be no and start feeling sad about it before we even asked our parents. That way if they said yes, we’d be super happy, and if they said no, we’d feel pretty much the same. I felt that this plan was BRILLIANT. It’s etched so vividly in my mind as a stroke of utter genius that I can even remember exactly where I was standing when I revealed my amazing idea to Bethany – right on the border between our yards, near the tree that was shaped like a W.

As a Sleepover Disappointment Coping Strategy, it was pretty decent, but as an approach to life in general, I’ve got to tell you, it’s pretty lousy.

All too often in my life I have followed this protocol of protecting myself from disappointment, rejection, and failure by assuming things are not going to work out. I am probably in the running for an Olympic gold medal in Emotionally Dealing With Bad Things That Haven’t Even Happened Yet. Focus too much on what will go wrong, and eventually you don’t try so much. Don’t try so hard. Don’t dare.

What does all of this have to do with creativity? Well, it all comes down to fear. Fear of failure is something that lots of people deal with, probably all people at some point in life. I think fear of risk is something slightly different, and it’s even worse. Fear of failure means being afraid of the moment you crash to the ground. Fear of risk means being afraid to even leap. It’s a fear of being vulnerable at all. An addiction to safety. Unfortunately for safety junkies like me, being creative is ALL ABOUT being vulnerable. It’s taking something that you made and putting out into the world – it’s inherently risky. Giving form to your ideas is like exposing parts of your innermost self. Even if no one ever sees the things that you create, I feel that there is a risk in just bringing them into being.

fearmeme

Today is the last day of my 12 week course on “creative recovery” with The Artist’s Way, and in a bit of synchronicity it will be the last of my posts on creativity for the month of March (though I’m sure it’s a topic I will return to now and again). When I started the process of reading the book and writing the journal, I was skeptical of the idea that I was a blocked artist. I thought, I am an artist, I just happen to be TOO BUSY right now to create the things I want to create. Uh huh.

Much of The Artist’s Way for me was about admitting to myself that I really am afraid to make the things I want to make. It’s much safer for me to keep them inside and just keep telling myself I don’t have time for them, yet. Sure I have time to write a couple of blogs and moderate a few Facebook pages and do commission work as an illustrator and raise and homeschool two kids and start a co-op, but write a memoir? Nawwww. Draw a comic book? If only!

Though I did, through the exercises in the book, trace some of my personal insecurities back to comments that influential people have made to me along the way, ultimately I know that the buck stops with me. My fear can’t be placed at anyone else’s feet. I know that it scares me to be vulnerable and I’ve always been that way. But I am beginning to let myself set fear aside long enough to taste that excitement of doing the things I really want to do, as thrilling as letting myself anticipate a sleepover with my best friend when I was five.

On Doing Things Badly

Creativity, Writing

A lot of people talk about “failing well,” and I do love the concept. But, maybe this is just a linguistic quirk of mine, the word failure does not resonate with me a whole lot when it comes to creativity.

I see failure as a binary possibility – pass/fail, success/failure. You fail a test, fail a class. It’s a kind of non-doing. You did not meet the criteria or measurement of success. You failed.

What happens in the creative process seems less black and white, and definitely involves doing. Doing it badly perhaps. When you write a poem that just isn’t working, make a painting that doesn’t feel right, when your rhythm is off, when the solution isn’t coming to you, this may feel like failure. But it’s actually part of the creative process. It’s discouraging and frustrating, sure, but those clunky bits still have value.

Going back to the Facebook conversation I had with my friends and family and again back to my brother’s advice – he said that he believes the more you fail, the more you learn, though it may not feel that way at the time. He used the phrase “hidden knowledge,” which I love, to describe the learning that may go on beneath the surface when you are doing something badly or feel like you are failing. My brother Ryan is younger than me but I look up to him as an artist. I don’t know anyone more hardworking and creative when it comes to following their passion (you should check out his solo work as well as the duo Kodacrome).

Doing things badly is, in fact, an essential and inescapable part of the creative process. As much as I wish it were, it is not possible to be excellent the first or second or tenth time you try something. It’s a cliche, because it’s true, but think of a child learning to walk and how many times they fall as they learn. Most people are able to do some invisible work – mental problem solving, visualization, imagining – to help develop their skills, but there is always going to be some hands-on practice, and you know what they say about practice. That it makes perfect means you will spend a lot of time being imperfect first.

You absolutely have to be willing to do it badly for a while if you want to do something well, or do it at all really. It’s the doing that must be your focus, not your skill level or successes. In November, I set about writing a novel for NaNoWriMo knowing that it would not be good – why? I had never written a novel before. Hell, I’d only written a handful of short stories, back in college! I had almost no practice writing fiction so there was no reason I should expect to magically be great at it. I told myself I surely had at least one bad novel in me that I’d have to get out in order to find a good one. So that’s how I moved forward.

That doesn’t mean you don’t push yourself to do your best, but if you aren’t willing to make mistakes, you won’t even be able to begin. Failures will paralyze you. The pressure will stunt your growth.

I’ve not read any Malcolm Gladwell yet but I know that he is famous for writing that it takes 10,000 hours of practice to achieve mastery in any skill. This intuitively sounds right, though I don’t think we should be TOO literal about the numbers.

I do think of two problems with this theory. What are the two things that first come to mind, free association style, when you hear that 10,000 hours concept? Mine are Tiger Woods and piano. One problem with the 10,000 hours idea is that it makes us – or at least me – think primarily of technical skills. I don’t think of writing or drawing or singing or acting – things that, I suspect, we tend to think people are either born “good” at, or not. But in fact everyone needs to practice their skill to achieve mastery (or anything close to mastery).

The other problem is that the number 10,000 is overwhelming. If you do something one hour a day, it will take you 27 years to get to 10,000. I’m not so great at math, but I think that means that if you manage to practice your skill for four hours a day, you’re still looking at almost 7 years of practice. If you are, let’s say, a busy mom unschooling two kids and working at home and just beginning to work on your passion, you might think, EGADS, I have decades ahead of me to actually become good at this!

Here’s an antidote to that toxic thought spiral, from The Artist’s Way:

Do you know how old I’ll be time the time I learn to ______ ?
The same age you will be if you don’t.

On Working Through Dry Spells

Creativity, Writing

Last month I got super excited about writing about creativity all through March, and sketched out a posting schedule and topics I wanted to write about, but then, life happens. My flow was interrupted by the anxiety of waiting for my grandmother’s passing, by making travel plans, by traveling and being with family and all of the swirling thoughts and feelings that that entails, and by the busy schedule that awaited me when I came home. (I’m not always so busy, but busyness happens from time to time.) Before all of that, I was talking on Facebook with various people, including my brother Ryan and cousin Tricia, about the creative process and how to tap into that flow of authenticity and what to do when you can’t. Tricia reminded me of the Pablo Picasso quote, “Inspiration exists, but it has to find us working.” Ryan compared being an artist to being an athlete – you have to practice a lot and stay in shape.

There have been plenty of times when I’ve considered chucking this blog. It’s not REAL writing (whatever that is). I’ve worried that it’s distracted me from REAL writing (whatever that is). Or sometimes just having all of these thoughts of mine preserved in internet amber gives me the heebie jeebies and I want to somehow bury them and run away. But ultimately I think I keep blogging because this is my practice. This is how I stay fit and active, creatively. I just keep writing, and sometimes it’s just writing for the sake of writing and other times I get to tap into that Source and write something that feels real and whole. I try never to publish anything that feels totally wrong. But it doesn’t all have to be great, and having a low pressure outlet like this is an essential tool in my process. I have other outlets – I have been keeping a journal for a few months, hand written, where I write ANYTHING that comes to mind, good, bad, silly, anything. I’ve been dabbling in very loose memoir comics, keeping them super casual and just for fun. I think it’s also good to have outlets that are NOT directly related to your creative pursuits, though that’s something I’ve not been keeping up during the winter very well. Getting your body moving and/or doing physical work with your hands can get your creativity flowing in surprising ways. I enjoy doing yoga, tidying or reorganizing the house (spring cleaning is my JAM), taking walks with the kids when it’s nice out. I’m a pretty indoorsy and sedentary person but I do appreciate the way getting out of my head for a while can refresh and reset my mind.

Ultimately it’s about maintaining forward momentum when you hit a dry spell in your work. Don’t get paralyzed. Believe that you’ll hit your stride again and until then you have to just keep going in whatever clunky way you can manage.

A Month on Creativity

Creativity, Identity, Writing

Erin5four

Drawings I made at age five.

I believe that all people are creative. I know many disagree with that – often it’s the people who think they themselves are not creative. But creating simply means bringing something into the world that was not there before – it might be a drawing or a song, or a mathematical proof, or the execution of a football play, or just a solution to a problem.  Creativity is part of being human. The idea that we are “not very creative” is a story we tell ourselves, and it is false.

I do believe that everyone possesses this well of creative energy. It doesn’t mean that everyone is a genius or a master of something. It doesn’t even mean that everyone has to “do what they love” as a job. It just means that everyone is born with the ability to make something out of nothing. People themselves are works of creation, of course – a baby is a new person who never existed before.

I’ve always taken a special interest in children’s drawings – not just my own or my children’s. Nearly all children begin to draw at some point in their development; it’s a preliterate form of expression that has been with our species since before we invented an alphabet. Before adults begin to interfere with the process, all children – not just the “artists” among them – have a natural sense of composition and form. Ironically, it’s when formal instruction is introduced that children tend to lose that innate sensibility, and trying to get their drawings “right” is something that cuts them off from their own creative powers.

Erin5one

Another of my drawings from when I was five years old.

Last month I was at the local art museum with Mike and the kids and we went to visit the water fountain at the same time that a school group was there drawing the fountain – I would guess they were about second or third graders. I was surreptitiously watching them draw for a few minutes, though it seemed most of them had finished their pictures by the time we arrived. The students whose drawings I loved the most had a kind of confidence and immediacy to them – some done quickly, some undertaken with more care and time, but the best ones to me all possess a sense of freedom and uninhibitedness that can’t be faked.

I saw one girl, on the other hand, who had drawn a few timid lines, looked around at her neighbors, caught me watching her, and began to furiously erase her work until she literally ripped a role in the paper. Past a certain age – maybe kindergarten age? – I think there are always a few of these types of kids in any group. Sometimes they are in fact the Artists of the group who have been singled out by parents or teachers as being “good at drawing,” but sometimes they are at the other end of the ability scale, the ones who have noticed or had pointed out that their drawings don’t look as good as the other kids’.

Later that day when we were in the kids’ art space at the museum, I gestured to the wall of children’s drawings, things that had been done there in the museum and pinned up, and asked Mike to guess which one I liked the best. It wasn’t the most realistic, the painstakingly “shaded” close up of a flower, the most technically advanced, the one that probably 9 out of 10 kids or adults walking by would instantly pick out as best. It was a delightful still life, done in a simple line drawing style, terrifically out of proportion, the perspective nothing close to reality, but it was alive, and made perfect sense in its own little world on the page.

That drawing had the sort of energy that most adult artists try to tap back into for the rest of their lives. When I was a freshman at RISD, my first semester drawing teacher had us sit and scribble in large newsprint pads for the first 20 minutes of every class. We were not to draw anything representational or try to make it look “good,” whatever that might mean. When I was 18, frankly, that exercise was baffling and frustrating to me – I was there to make “good” drawings, why was I scribbling? – but now I totally understand it. To make something good, it must be real, and to make it real, you must let go of making it good. It’s at the heart of why early childhood drawings are so fantastic. They are not focused on making Art, they are purely making.

I’ve decided to write on the theme of creativity in this blog for the month of March. It’s something I’ve been thinking about quite a bit lately. Right now I am still reading and doing the 12 week course for The Artist’s Way and at the same time have also been reading Sir Ken Robinson’s The Element: How Finding Your Passion Changes Everything. There is considerable overlap between the two books so it’s been fascinating to read them simultaneously. At the heart of them is the idea that tapping into your passion – whatever form your personal expression of creativity takes – is to tap into your authentic self.

What’s It All About? Thoughts on Disability, Difference, and Dissatisfaction

Writing

We spend nearly every minute wanting things to be a little bit different, a little bit better. Even now, reading this, you might be thinking defensively: But I only want what’s best.

We call it wanting the “best.” We say we want “advantages” for our children. We say we are “enriching” their environment and “exposing” them to more “opportunities.” That’s all well and good, but what do we mean when we say that? Do we mean that we want them to turn out smarter? More talented? More popular? More attractive? More admired? More successful? More accomplished? With more status and money? Yes! We mean all of that and more! To what end? To serve whom? To serve ourselves? So we can be satisfied? We won’t be satisfied then unless we know how to be satisfied now.

What do we mean by all these things we want “for our children?” All these things we think they “need?” Whatever they are, and however, we acquire these things, the fact remains: desires are inexhaustible. Chasing them, however, will exhaust you. It will frustrate you. It will cause worry and anxiety, grumbling and dissatisfaction. It will disrupt your home and impose expectations on those around you. It will cost you money, and it will cost you time, all the while distracting you from your life, bountiful and precious, right in front of you.

– Karen Maezen Miller, Momma Zen: Walking the Crooked Path of Motherhood

I recently shared on Facebook a guest post by one of the bloggers I read regularly: Lisa Morguess’s “On the Possibility of Curing Down Syndrome.” In it Lisa talks about her thoughts on emerging technology that could potentially “cure” Down Syndrome by shutting down the extra copy of the 21st chromosome (this, in case you didn’t know, is what Down Syndrome is – an extra copy of that particular chromosome). At the crux of her position is this: “What bothers me about the question of whether I would change the fact that my son has Down syndrome that it’s just another example of how we value people based on arbitrary standards, like intelligence and achievement and performance.”

When I posted this, another friend commented to share a TED Talk by Andrew Solomon (and by the way Lisa has blogged about Solomon’s book too which made watching this talk a little weird for me knowing that Lisa did not find him to be all that diversity-friendly, but that’s a side note) in which he talks about the tension between new science that can or will allow us to prevent, treat, and cure disabilities and the growing social acceptance of people with disabilities.

In it, Solomon quotes Jim Sinclair, an autistic adult who co-founded Autism Network International: “Therefore, when parents say, I wish my child did not have autism, what they’re really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead. Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

This is a powerful message that shouldn’t be brushed aside: when you try to fix us, we feel that you want to erase us. I can’t pretend to know a lot about disability or how people with disabilities feel, but Sinclair’s statement reverberates within me. It seems to me that a lot of the disability in disability stems from the rest of us – mainstream, able-bodied, neurotypical people – refusing to make room for other ways of being.

Andrew Solomon compares disability to homosexuality in his talk, in the sense that gayness also used to be considered a condition or mental illness that should be treated and cured. I too thought of this comparison when I was reading Lisa’s essay. If we discovered a way to shut off the genes that make a person gay while still in utero, would people do that? Would we allow it? How is that different from shutting down Down Syndrome, or autism, or (to use some other disabilities that Solomon has researched) deafness or Dwarfism?

The question at the heart of all of this is not a small one. It’s the Big Question, really: What is the meaning of life? I don’t think many people would come right out and say that the meaning of life is living independently, finding gainful employment, choosing a life partner and reproducing, but these seem to be our unspoken assumptions about what makes a life meaningful. These are little more than American conventions and yet they are the goals that we drive people towards with great intensity and anxiety from the moment those little people are born without really ever explicitly asking ourselves what we truly value. Whether it’s Early Intervention for the toddler who doesn’t speak or working on literacy with your preschooler so that he’ll enter kindergarten ready to read – I think we have to stop and take a moment to ask ourselves what it’s all about.

This is why I put the quote from Karen Maezen Miller (author, mother, and Buddhist priest) at the top of this post. It seems to me that the desperation to give our children head starts and to “intervene” in the development of young toddlers and even to “cure” disabilities all arise from this same, fearful, inexhaustible desire to make everything better, different, to maximize potential, to do what’s BEST with really no clue what “best” even means or whether it’s something worth achieving.

Everyone must have a personal answer to the question of what life’s all about, but maybe as a culture we can come up with some new, less exclusive and materialistic values. I might be a bit of an idealist but I think it is possible. Maybe we can value people simply because they are people and not because of what they are able to achieve. Maybe we can encourage authenticity. Respect diversity. Ease suffering. Embrace difference.