Ideas for Safe and Calm

Writing

Infographic titled "Ideas for Staying Safe and Calming My Body and Brain." Full image description in body of post.

Ideas for Staying Safe and Calming My Body and Brain (PDF)

transcript:

Ideas for Staying Safe and Calming My Body and Brain

[Image of a smiling cartoon cat face at upper right.] 

In checklist format, two columns [with a large open box icon to the left of each text item and a graphic image to the right]:

Drink water ([image of a glass of water with ice and a straw]

Take a deep, slow breath [image of cartoon cat with open mouth, breathing out]

Ask for help [image of cartoon cat with sweat droplet, spiral icon and question marks above head]

Leave the room [image of a door]

Imagine being in a peaceful place [image of a landscape with green hills, road, sun, and blue sky]

Get a hug [image of a gray cartoon cat hugging a smaller white cat, with heart icon]

Stretch, jump, or run around [image of a cartoon cat arching back and tail in the air]

Listen to music [image of a musical note symbol]

Draw or write [image of a paper and pencil]

Look at a book [image of open book]

Spin a fidget spinner [image of fidget spinner]

Squeeze a squishy toy [image of a cartoon cat playing with a ball]

Remember everyone makes mistakes and it is okay to feel whatever you feel! [image of cartoon cat winking and blowing a kiss/heart]

erinhuman.com ©2020


I’ve also made a version of this infographic that you or your kids can customize by adding a few more of your own ideas. The image description is the same, but with four additional open boxes followed by yellow lines/spaces for writing in ideas.

version 2 of infographic, Ideas for Safe and Calm. Full image description in body of postIdeas for Staying Safe and Calming My Body and Brain: version 2 (PDF)

What Autism Safety Really Means

ableism, Autism, Disability, Education, Infographics, Writing

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 this is a key safety issue for autistic people, often the ways that autism parent communities and neurotypical-led organizations discuss this issue are problematic, particularly when they neglect the intersection of systemic racism with disability rights. 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 by their nature elide the realities of autistic and otherwise disabled people of color. What kinds of issues might arise for a population that is already at risk of being racially profiled? Given the risks, how can we assure people – is it even ethical to assure people? – who already feel unsafe or unable to trust law enforcement to protect them that they should entrust police and other first responders not to use their disability status against them in some harmful way. And that’s to say nothing of the ethical repugnance of pushing even more compliance training upon black and brown folks who historically have been shown how no amount of compliance will protect them from racist abuse.

Neurotypical parent/expert control of autistic people that strips autistic people (of any age) of autonomy and ramps up compliance training, in fact makes autistic people less safe in the long run. When parents, teachers, and autism “experts” have tunnel vision that focuses on autism itself as a threat to autistic people, rather than taking a careful accounting of how ableism affects disabled people – and how other forms of oppression intersect with ableism to compound the harm done – they actively endanger autistic people.

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. 

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.

What I’m Listening To: Perla

Writing

We’ve moved from Elmo to The Nields to Perla as the never-ending soundtrack of our lives in the Human house. We scored an early release copy of the EP by donating to the Kickstarter campaign that launched the record, so we’ve had this on heavy rotation for weeks, but it’s available now – right here – for digital download (pay what you think is fair!) or 10″ vinyl ($15).

Mike and I both love this record because the electronic music is poppy but substantial, upbeat but with a gritty edge, multilayered but also minimalist. Mike likes “All the Ama” best and I’m partial to the final track, “Dance Malady.”

If our raves aren’t enough, Miles also ADORES this music. In the car he gets mad if I try to switch to another CD, and at home he requests it multiple times a day by pointing to the ipod and saying “Blue. Blue. Blue.” (He has no word for the color white so he describes the album cover as blue.) He seems to like “Robbery” the best and imitates the beat with a “k, k, k” sound. At the end of “Dance Malady” there is a little chime that Miles calls “fishies” for some reason. As musical obsessions go, this one’s pretty enjoyable!

Check out the link to hear “The Bug,” their first single, in its entirety.