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:
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.”
Bio: 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
Share your story too!
Let’s inspire each other in non-cheesy ways!
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.