Part of the Story: Lego, Neil Gaiman, and the Importance of Inclusion

wheelchair guy

The new wheelchair-using Lego MiniFigure (Photo by Daniel Karmann/AFP/Getty Images)

My friend Alex just sent me a truly wonderful write-up from the Guardian about the newest member of the Lego MiniFigure family, who happens to use a wheelchair. He will be a part of their Fun in the Park set, which you will be able to buy for me as a half-birthday gift this June.

Even though you can build your own Lego-Person-in-a-Wheelchair, people are rightfully stoked over this new arrival. Even Lego was taken aback by the enthusiasm. Why all the hubbub? Because making something widely available that represents a person with a disability as a typical member of the community is the type of classy move that should become normalized. Like opening the door for someone else, or wearing a monocle.

For many people with disabilities, it is still remarkable to see examples of our experience in popular culture that are not somehow tinged with pity, otherness, or negativity. Think of the movies, television, commercials, books, art, modeling, and photography you’ve seen recently.

When did you last see

Someone using a wheelchair, walker, cane, or crutches?

A deaf or hard-of-hearing person?

A blind or visually-impaired person?

An autistic person?

Someone with an intellectual disability?

Someone with an “invisible” disability?

A person with mental illness?

And what was their story like? How well and fully did you get to know them: their flaws, their quirks, their sense of humor?

It doesn’t work to have a person with a disability in every story, playing every role, etc. And I don’t consider myself someone easily offended or looking to pick a fight in that arena. But disability is a big part of our human story. So, I’d appreciate an acknowledgement of that fact that more than a handful of times a decade.

And the way a story is told is important, too. 2108198

To be honest, I’m still surprised every time I see someone with a disability represented in media, art or pop culture in anything other than a stereotypical manner. If the disabled character isn’t a token, a poster child, a weakling, a burden, an utter inspiration, or a saint, it’s safe to say I’m sufficiently shocked.

Playing a part in the pop cultural/social/artistic narrative- and the complexity/significance of that role- has far-reaching importance. When I see someone I identify with, I am reminded of my own role in the world. It is a welcome affirmation of my own significance my community, and in the lives of those around me. But when my experience is wholly absent from the most popular media, the most widely read stories, it is difficult to believe that society expects me to play an important part.

Of course, I know there examples and exceptions beyond our Lego friend. One of the more notable ones is Odd & the Frost Giants by Neil Gaiman. I won’t give anything away except the part that made me cry snotty tears (thanks, Neil). When Odd is offered a chance to have his “bum” leg exchanged for a “better” one, he refuses. It’s a pain sometimes, but overall, Odd likes himself and his life the way they are, weakness and all.

Odd shows us that the adventure of life should be inclusive; and that life is more about goodness than perfection. And Lego Guy reminds us that people with disabilities are pretty chill for the most part, and spend a lot of our time doing non-inspiring things.

But perhaps the most important thing Odd and the Lego Guy are teaching me is this: one sure way to fill the gaps of cultural invisibility is with creativity, with art, and with the truth of my own story.

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Fear & Shaming in Nashvegas

Calvin & Hobbes by Bill Watterson

Hello. I’m Beth.  And I am afraid.

I am afraid I am not really a writer because a real writer wouldn’t be afraid to write, or wouldn’t wonder whether or not she was a writer.
I am afraid that other people don’t think I am a writer, either, because anyone can blog.
I am afraid I am not a writer because writers are artists, and sharing your opinions, struggles, or personal stories is not art.
I am afraid of my own opinions about social and cultural issues: that they are too too lax or too controversial for my religious friends, too intolerant for my friends who are not religious or who are not a part of my religion, incorrect, inaccurate, biased, or in some other way wrong.
I am afraid when my opinions are popular, because that makes me a conformist, a sheep, godless, or one of those weirdo Christians (depending on the day, and the issue or topic being explored).
I am afraid when they are unpopular because they might be off-base, informed by some unknown bias, or outright wrong.
I am afraid to have conversations or to post writing about these opinions on social media because I am afraid of being judged, criticized, or proven wrong in a way that makes me feel small.
I am afraid to send my posts to Huffington Post anymore, because one piece that took me months to write drew pages of criticism and trolling.
I am afraid to post to my own blog anymore, because who calls themselves a blogger that never blogs, or: who the heck wants to read a blog about someone who just talks about how afraid she is of literally everything?
I am not a good enough writer because I am not a strong-stable-or-together enough woman, an independent-enough advocate, or a smart-enough blogger.

***
I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.- Nelson Mandela 

“There is no fear in love. Perfect love casts out fear.”- 1 John 4:12

I realized recently- after a series of debilitating panic attacks and depressive episodes- that so much of what I did (or don’t do) was driven by fear and its close cousin, shame. This realization wasn’t due to some philosophical epiphany or accrual of great wisdom, but because whenever John or another loved one asked me what was wrong, my answer would invariably start with either “I’m scared [or worried] that. . .” or with a litany of things I disliked or even hated about myself.

Then I started connecting the dots. I hadn’t produced anything creative in months upon months, in spite of yearning to write to you all to share my stories about my totally rad new marriage, my struggles with the unpredictability of nonprofit sector employment, or my resolution to read more books (which I am actually keeping, because I barely read any books last year: score!).  I had stopped stirring the pot in conversations and on social media, and was posting way less satire or evocative writing from others I admire. People were asking me questions like “How are you doing. . . really?” and making their best concerned faces.

“Fine,” I would say. But I was really just a time bomb composed almost entirely of frustration, tears and calling myself names that I would never call someone else.

In my rush to keep my negative emotions and struggles with shame, fear, and self-loathing a secret (so I wouldn’t burden anyone, or be perceived as a weak, weepy, weirdo, etc.), I kept the joys and triumphs a secret, too. I numbed and closed off all my emotions (because you can’t pick and choose what you numb), and kept connection and intimacy at bay across the board.

I finally got to the point where I was afraid of how ashamed I was, and ashamed of how afraid I was. “That’s enough. This has got to stop.” I actually said those words aloud, and that was when the clouds began lifting.

In addition to leaning in to the rigor of the Lenten services and prayers, I began reading and discussing (amongst a few loved ones) Daring Greatly by Dr. Brené Brown.

[Note: although my theology shares a lot of common ground with the principles in the book, it is research-based and practical in nature: I would highly recommend it for your personal enrichment, Lenten or otherwise.]

I admit, I was embarrassed to buy a book from the self-improvement section, but to say my self didn’t need any improvement would mean I should also be buying books about lying.

Anyway, Dr. Brown gets into the nitty-gritty of shame and vulnerability and how they cripple creativity, relationships, and self-worth. She unpacks over a decade of research, and suddenly I found myself saying “I am scared of everything, and that is a problematic situation in several ways. It’s science!” That was when I really started to grasp that fear and shame were not only holding me back from being creative, but were suffocating and hiding entire parts of myself and my struggle through the joys and the difficulties of life. I was fed up with who I had become, and the fact that I neither knew nor recognized her.

So I decided to take baby steps by posting a detailed account of this battle for you and God and everyone else to read about and weigh in on via the Internet.

This doesn’t mean I can say I will blog every week or every month, or that those fears I listed up at the top have stopped, or will stop anytime soon. I haven’t figured it out, I haven’t vanquished any foes. I have just realized that all of these things, even if they are huge and scary, can be pushed through, can be voiced, and their power over me can be diminished.

I don’t want to deprive anyone of my creativity or my individuality, or of my regular ole weird self, because I would rather look back and say, hey, my writing was worth it to me. Or, hey, at least I pushed through it. Being brave doesn’t mean that you’re not scared of the monsters under the bed, it means you call them out and fight back. This is a vulnerable process and we have to do it in some way every day. But I’m starting to see just how “worth it” the fight is.

What we give to the world out of our uniqueness is our art, whether it is a painting, a blog, an academic paper, a good meal, or an honest connection to another person. Whatever you do to be your true self is worth it, even though doing it is scary. You are not alone. Success is not having no battles to fight, it’s fighting and and strengthening and pushing through that makes us better in the long run.

There’s no way I could end this post saying “That’s it, I’m done with fear.” But I am done with being ruled by fear (and shame). I’m done with making excuses, with disconnection. I want to be myself, and for people I encounter through my writing or in my life to actually know who that is.

in case of Mayan Apocolypse.

Okay.

It is probably safe to assume that people like me-with the attention span of a hummingbird, and an equally overdeveloped guilt complex-should not focus too much time or energy on resolutions for the new year [or on how I may have dismally failed to keep the ones from years prior].

But now the Mayans are going all Televangelist on me and telling me it’s going to rain blood and explode badness at the end of 2012. That means I need to set at least one goal I can feel good about. You know, just in case I get thrown down some kind of Doom Pyramid. [To be fair, the Mayans were a little intense. They probably looked forward to that sort of thing.]

S0. If things are going to get a little Kubrick by the end of next year, I might as well take every opportunity to Carpe Year, as it were. Don’t fret. I don’t plan to throw responsibility to the wind and give over to Bacchanalia. And I don’t mean to pull a Thoreau, quit paying taxes, and become a forest dweller. I just need to continually engage in pursuits that make me feel whole and happy, while I have the chance.

My resolution for the year? Be creative. I mean, embody the term; redefine it if I have to. . . it is high time to push my creativity to the limit. Challenge it. Grow it. Do whatever it takes to more fully participate in it.

Because, along with being in Sacred space, being in creative space gives me peace and joy. It makes me feel like I am more fully myself. It shows me new parts of myself. It humbles me and makes me proud. It gives me crystalline awareness of the human and the Divine.

While taking part in a collage night a few weeks ago, my friends and I adopted a new rule: The answer is Yes. Should I give FDR giraffe legs? Yes. Should I place the words “The Strangest” across an American flag? Absolutely. Should I give Baby Buddha robotic hands? Of course you should.

When it comes to Being Creative, if I ask myself “Should I try this?”, I am starting to understand the answer should be yes. [I’m not saying that every single impulse has to be indulged and obeyed, or that every endeavor will be successful. There’s just no reason I should limit myself in an area where everyone is meant to drop the limits.]

How is this goal going to be quantified? I’m not sure. But the nice thing about having a resolution completely based in creativity is that my approach can be, too.

I have been thinking on this for a while. And the glimpses of freedom and joy I have felt while immersing myself in creative projects is something I had to make a bigger part of my life.

I have basked in the love of my friends and family long enough to know that you guys will not only support me and hold me accountable, but that many of you will jump on the bandwagon [which undoubtedly resembles the bus from Magical Mystery Tour] and join me in my foray.

And knowing how talented so many of you are, and how much you inspire me, we seem to be well on our way.

Look out 2012. Look out Mayans. We’re painting this town red. Or blue. Or decoupaging it. Whatever. We’re making it beautiful and sparkly and awesome. And in that way, we are claiming it. We are promising to make it new.

we are all made of arts

Last night was great.

And not just because I stayed in, ate cherry pie a la mode, and spent time with my favorite Bird Lady. I also had a series of fascinating conversations [somewhat simultaneously; insert begrudging sense of appreciation for the immediacy of modern technology]. All of them were focused-one way or another- on creativity, art, and how we as people-beings express ourselves with them.

"The basis of art is truth, both in matter and in mode."

At one point, Chris-who had called me looking to collaborate on a project-said, “I knew you were an artist, so I figured we should.”

“What kind of thing did you have in mind?” I asked him. I was flattered, but confused. He forgot to call me a blogger. He had just said I was an artist, and I had this odd compulsion to clear the air as a result.

But as we were talking, I remembered. I write songs often. I paint occasionally. I draw in little notebooks. I even sing, when the opportunity [a gracious audience full of gentle souls I probably know very well] presents itself.

And I thought about Patti Smith for the first time in a while.

"When I was younger, I felt it was my duty to wake people up. I thought poetry was asleep. I thought rock n' roll was asleep."

At any given time, she has been a writer, a singer, a model, a photographer, an actress, a songwriter, a visual artist [painting, drawing, collage], and a poet: probably all at the same time. She has the right idea. She is an artist. Art is her medium.

The more I thought about it, the more I realized that- in an effort to explain my quirks in a concise fashion-I had been cheating myself. Limits are for the professionals and mathematicians. They are not for me to impose on my own creativity or desire to learn.

So, I guess what I’m saying is. I’m not “just a blogger” anymore than someone who paints is “just a painter”. We are all artists.

So, do what you love. Find something new. Try everything. Learn from it all. Enjoy all the parts of who you are.

i blame punk

Today was relatively low-key. I sent some emails, worked on things that involve words like “file” and “document”, paid a bill, messed around with my bank account, and put away some laundry. A casual observer may be worried: you guys may think I am losing my edge. But, fear not, grasshoppers.

"plain and simple": acrylic on canvas by yours truly

Tonight I painted a picture. This picture, as a matter of fact. It started in my head as a much more elaborate concept, but by the time I finished, it looked like this. I realized there wasn’t much more I could do for it after about 27 mistakes, and decided it was finished.

Disappointed, I thought to myself, “A kid could have painted that”, and fumed about it for a minute or two before I realized: maybe that comparison isn’t such a bad thing. After looking at it-and pondering on love as the subject matter-I understood: “That probably is how a kid would see love: nice and bright, plain and simple”.

You’re probably wondering: when did you start painting?

Tonight, apparently.

Why?

Patti Smith- the Godmother of Punk Music- in all of her dissonant glory, can be said to be [at least partially] responsible for  my latest creative resurgence. I read her memoir Just Kids recently. And aside from wanting to weep, wail with solemnity and purpose into a microphone, and travel to France on a whim, I also found myself wanting to make more art.

Not just art I was accustomed to, either. That’s why I have, in the past couple of weeks, written not one, but two songs, scribbled out several poems, and completed a painting.  I couldn’t explain it, until I realized Patti’s approach to art had helped serve as an impetus.

south tower, patti smith

I realized a lot of things from reading her story. Here are a few of them:

No one is going to tell me I am an artist. I have to tell them.

There is no reason why I have to stay in one realm of art. It’s not like being an athlete, where most people that play football aren’t great at baseball. An artist can own any art form if he or she is confident enough to do it.

There is no reason why I can’t get my friends involved. Just Kids, more than being Patti’s autobiography, is a biography of her friendship with the late Robert Mapplethorpe. The interplay of their lives and how it affected their art is something to behold.

Loving the creative in others brings it out. The reason why Patti, Robert, and the friends in their community were so prolific with their poetry, photography, drawing, painting, acting, modeling, and playwriting [I think I got all of them], is because they were a group that encouraged and bolstered one another. They never gave up on each other. So each individual, in turn, never gave up.

If you set our lives side-by-side for comparison, Patti and I don’t have that much in common. And our style of art differs considerably [although if I flatter myself, I sometimes imagine similarities in our prose]. I don’t pretend to have had some immediate personal connection with her as an artist. However, I did feel completely connected to her as someone sharing a very human set of experiences in a beautiful and empathetic way.

And with that, she woke me up.  I started to think about where I am and who I’m with, and what I have to work with. And I saw that I am surrounded  by creative, fascinating, and inspiring people. And I realized that-although there are plenty of situations I have to cope with that are beyond my control and influence, the only one truly limiting my expression of my own creativity is myself. And I got over that quick when I realized anyone can find a way to put paint on a canvas.

So. I guess what I mean to say is: Gracías, Madrina.

shark fins

Holding hands

Is what people in dreams do

Dancing stars

Fall between me before you

And we lose ourselves

Shopping malls

Look better in outer space

Waterfalls

Wash the freckles from your face

And we lose ourselves

Will I find you

Will I find you

When I wake up
Roller skates

Are more fun on the sidewalk

Rainbows scraped

On the driveway in orange chalk

And we close our eyes

Lemonade

Fills a glass in a diner

Running late

Life has never looked finer

And we close our eyes
Will I find you

Will I find you

When I wake up
Children play

In the dirt on the playground

Dinner bells

Make obtrusive alert sounds

And you see my face

Picture frames

Made of pasta and sequins

Swimming pools

Full of hands making shark fins

And you see my face
You have found me

You have found me

And I wake up

– Beth Hopkins

(Please ask permission before copying and sharing with others. Many thanks!)