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living with moxie:

sometimes what you fear the most to do is the very thing that will set you free – live your one precious life with a little moxie

This is continuing the conversation on living with courage – the original post is here, and the part about commitment is here. I’d love it if you shared your story about living with moxie, about what you are moving toward and embracing (form is at the bottom of the post)

Here’s our first guest post, by Cheryl Green:

“Interrupting Disableism”

My fear since a traumatic brain injury in 2010 has been thinking I could never interrupt disableism. Some people might not realize that people’s attitudes can be discriminatory against someone with a brain injury.

After all, we are usually described with positive terms like “miraculous recovery, a true fighter, and someone who can really overcome adversity!” But a serious injury to the brain can cause impairments that don’t always feel so miraculous or overcome-able.

Things like memory problems, lack of emotional control, really slow thinking, changes in how your body moves and energy level and sleep, difficulties communicating what’s on your mind reliably.

My fear has been thinking I could never interrupt disableism.

I was as oblivious to discrimination and oppression as anyone without a disability when I was young. Disability wasn’t in the conversation in my family because it must have seemed like it didn’t have to be. Just like world politics. We could keep the TV off and the newspapers folded and work our hardest to find and keep the happiness we deserved.

I’m not sure how it was that we bought in that we were more deserving of happiness than say, anyone else. But we did. And we perpetuated it without realizing it. Yet, that does not make us innocent. We are complicit.

I grew in consciousness around disability and the prejudice and fear people have around people with disabilities in my 20s. They are such casual targets of hateful jokes, off-the-cuff insults, abuse, and lower expectations and opportunities in society.

The jokes, the fear, the abuse:  these are all part of disableism and a very ingrained devaluing of people with differences that our society decided are unlikable. We talk about valuing diversity, but rarely is disability included in a discussion of cultivating and celebrating diversity and community pride. But if you are going to celebrate diversity with different ethnicities, languages, ages, sexual orientations, and gender identities, get ready. Each of those groups contains people with disabilities just as worthy of inclusion and self-pride as anyone else.

I get a lot of crappy statements and questions around disability. I am horrified by off-handed comments people don’t realize can be triggers for many of us (and especially horrified because I made them too, until I became disabled). Statements like “You’re crazy!!!” and “I’m feeling brain-dead today” and “I didn’t know someone with a brain injury could talk.” (I never said that last one.)

 I want to interrupt this, but I have a hair trigger.

The doctors call it poor emotional regulation secondary to traumatic brain injury. I can go with that. I’d like to add to that diagnosis that when you live with disability in your own life or in the life of someone close to you, you face so much garbage, intrusiveness, infantalizing, and objectification that it’s easy to understand you might feel called to lash out once in a blue moon. I try not to lash out. It’s socially unacceptable. Plus, I have been retaught that people feel bad when they’re yelled at. So it’s good to remember that and try not to yell at people. Nice is good. I have been pondering for a long time how to interrupt disableism and remain nice and non-yelling.

Finally, I did it last week. I did it once. Someone said to me, “I just have to know! What’s your disability?” I took a moment, took that deep breath the doctors ordered. An interaction earlier in the day led me to believe he was going to ask this the first chance he got. So this once, I’d had time to prepare. I made the choice to pretend to be upset instead of really getting upset. I just said, “Oh no, that is just such an intrusive question. How very awkward. Oh dear.” I made a look on my face like I was disgusted and in great pain. That was easy. I was feeling both.

He didn’t relent and rejected the notion that it was intrusive. After all, I had mentioned earlier that day that I have a disability. He reminded me I have the right to not answer just as much as he has the right to ask. So I went ahead and ripped him a new one, never yelling, but never calm. It took 25 minutes for him to stop demanding personal information and defending his right to know something about me I had already stated I wasn’t going to tell.

After all, he was “just curious.” I explained that people with disabilities are not objects to inquire about or be fascinated by. We are people. (That elicited an eye roll.) We are singled out and asked personal questions on vulnerable topics every day without any offer to reciprocate. I told him this was a no-win conversation, the only thing he agreed with. But he asked why I was making it no-win. He felt it’s pretty unfair that people shouldn’t be allowed to ask anyone’s race, or disability or anything else.

[Gosh, it must be hard to be so curious about The Other and feel like your freedom of speech and right to reinforce their other-ness is being attacked!]

 Thanks to my TBI memory problems, I don’t recall how this conversation finally ended.

But I did conquer my huge fear of interrupting disableism. I did it without crying, kicking the wall, biting my hands or resorting to a string of yelled cuss words. It took a lot of moxie to do it because I will continue to see this person regularly, and it’s not easy for me to speak up and defend myself to a middle-aged white man who’s a good bit taller and bigger than I am.

I’m embarrassed to admit that I haven’t slept well since.

I’m struggling with anxiety now.

But that is a small price to pay for me to know that I did it.

I let someone know that asking my disability is intrusive. The rest was either icing on the cake at best or just wasted breath at worst. Still better than knowing I’ve hurt someone deeply and saying “But I’m just curious!” instead of “I’m sorry.”

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Cheryl GreenBio: Cheryl Green, MFA, MS integrates her degrees in performing arts and speech-language pathology to explore how story can be used to break down stigma and barriers. She makes films that combine personal narrative and self-advocacy to create dynamic, artistic tools for Disability justice. She is on the board of Disability Art and Culture Project and served on the board of Brain-injury Information Referral and Resource Development (BIRRDsong)

You can find her at www.StoryMinders.com and

Film and Community Arts Blog: www.WhoAmIToStopIt.com

She’s also busy making “non-inspirational documentary about artists with brain injury” http://vimeo.com/87370381

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Share your story too!

Let’s inspire each other in non-cheesy ways!

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PS

And if you are cool with sharing your story on the main blog page, it’s up to you if you want your photo/name/website/blog linked. this can be as open or as anonymous as you want. YOUR CHOICE.

My parents both grew up in the San Francisco Bay Area. A liberal area, with conservative (Chevron-refinery-working) parents. My mom was never a hippie, but has always been pretty open. Open in a conservative way, if that makes any sense? That is, go organic, believe in and practice reiki and the healing power of oils, homeopathy, acupuncture and all that good stuff. But use your own spoon! Don’t be naked! No premarital sex!

One of the things I’ve admired about my mom is her leading by example. She wanted a different life for us than she had. She didn’t want us growing up in the Bay Area – and so she and my Dad – both city kids! – started a sheep ranch. A sheep ranch! How fun and how huge.

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What an impossible task, and how impossibly courageous!

What balls!

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Then, after a rather brief move into town, she and my Dad decided to move to the Fiji Islands in the South Pacific to become Baha’i pioneers (- “pioneer” is a Baha’i term for missionary).

Fiji! Tiny island nation with enormous mosquitoes, big diseases and few jobs for foreigners!

Fiji! Tiny island nation with lovely people, strong culture and a lilting rhythm in life.

Fiji! Where swimming can be an actual form of transport! – where cockroaches fly and spiders smaller than a hand span are small.

 

Yes, Fiji. Pre-internet. Fiji, when moving there from California necessitated newspaper and micro-fiche searches for information, books and enormous leaps of faith.

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***

We want so much for our kids, don’t we?

We want them to have what we wanted when we were younger, we want them to participate in life and enjoy every waking moment.

We want them to learn, grow, thrive.

We want their dreams to be sweet, we want the world to be kind to them.

I think we end up feeling that if we throw money at our bag of wishes and wants for our children, someone it will come to fruition.

If we buy the “best” toys, if we send our kids to “progressive” schools, if we clothe them in organic ware, if we pay for sports participation, camps, activities. If we spend time shuttling them to and from these scheduled things, if we arrange “playdates” with like-minded parents and friends, if we provide full-on “therapy” for our children with ‘special needs’/disabilities, if we all go to Music Together.

If-then.

If we do all that, any of that, more than that, then our kids will learn, grow, thrive, have. The world will be kind to them, their dreams will be sweet.

But see, I – the kid who was dragged kicking and screaming to the tiny island nation of Fiji where there were enormous flying cockroaches, the tiny island nation where there is actual breadfruit, where prawns live in streams, where avocados are the size of American footballs – well, I don’t buy it.

I don’t.

I think all that “if-then” will buy gloss and comfort. Gloss and comfort can be really great things, so don’t get me wrong here, I’m not dissing it. But I am questioning it. I’m questioning how necessary it is, I’m questioning our cultural obsession with it because you know what? In Fiji – that tiny island nation where I’d sit outside after school with my friends and dip the mangoes we picked into a blend of vinegar, raw cane sugar and freshly chopped chillis – in Fiji nobody I knew had any of of all this and people I knew were content in a way I’ve never seen people in the United States content.

People in Fiji had time for relationships. People.

Us kids had time to just ride our bikes around and free play. Go swimming. Sit and eat mangoes.

Schools – we didn’t have textbooks in the schools I attended in Fiji – we’d all have notebooks for each subject and we’d copy out what the teacher wrote on the blackboard. We would submit our notebooks for checking and we’d be marked according to our penmanship and drawings (- because we’d draw out the skeleton and so forth). All of that writing was reinforcing every.single.thing we were learning.

Those schools in Fiji were far, far from fancy by American standards but coming out of them, I easily jumped two grades when we moved back to the US. Easily. Schools in Fiji are that good and schools here are that easy.

***

I look at the courage of my mother and I admire it. I admire what she did, the chances she took. Even knowing what I know now, knowing how some of those chances did hurt, I still admire that she did it at all.

Because now… well, now I’m faced with the same chance. My knees are shaking and I am experiencing first-hand how hard huge leaps like this can be. I thought it would be easier than it has been. I grew up in Fiji, right?! Giant flying cockroaches! I counted bugs at night on my mosquito net like other kids counted sheep. This should be easy.

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I think of my Mom and how she led by example. She showed my brother and I how to grab life by the balls and really do the scary things. I want to be that way for my kids: I want to show them by my example – lead them by example – in a way that shuttling them to and from camp, school, progressive activity-upon-progressive-activity – never will.

I want to show them how to have courage in a world in which we can choose our destinies.

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I want to show them that they can be and do whatever they want: that there is no end to the learning and growing in our lives, there is no limit.

That at age 40, my own mother graduated from University (- it took her 2 years for her BA! Working full time! Caring for two teenagers!). And at age 40, I am embarking on a massive adventure.

There is no limit.

The learning will never end.

The adventures will never cease.

We can choose our destiny.

We can be, do and achieve all that we truly desire.

There is no limit: Lead by example.

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