As Kelly knelt on the floor folding her lighting equipment into her duffel, she looked up at me and said in earnest, “I feel like we have to do this fast. These stories need to get out now.” I felt the sick sink in my stomach because I knew she was right, but we just got started.
I half jokingly refer to Kelly as “my photographer” only because “this girl who agreed to come along to take the photos of interviews I am doing for this idea I had and had no idea what she was getting into” sounds lame..and lengthy. Plus her quiet role moving about the room with the important strangers who agreed to bare their souls to me for two hours gave them legitimacy. What do you call the person who helps provide authenticity to an experience? I don’t get to own that part.
Kelly bore witness to a world she knew nothing about three months before she spoke those words to me in an Airbnb in Dallas, Texas. I met Kelly randomly through a friend the previous summer at a concert. She was a confident, ticketless passenger on the way to a sold out show and found a scalper feet from the venue. I appreciated the cajones and thought she might be someone I would want to know. I did not realize that five months later, on January 27, 2016 we would be sitting for our first interview of a few dozen across the country.
We officially started a whole year ago as of today. Happy anniversary Kel.
Words like inclusion, rights, entitlements, supports are finally part of every day vernacular but even by definition imply separatist “us from them”mentality and leave out the miles of mountain range between the first mile and the last. But to me, those words felt like more than just a start.
When I got up off the pavement a year ago, I believed society and disability subculture were starting to speak some of the same language. I also believed that some of the narratives were getting further and further apart causing a rift within the movement. The time felt ripe to help normalize the experience of being disabled in a way that was not out of pity but rather in a way that lit up the path to be traveled. It was time to assume that folks were coming from a place of not knowing and not from a place of not caring. My personal mental exhaustion was not about my child or his disability, but the wholly unnecessary loneliness, barriers and misunderstanding by the world around us. How off the hook is it I believed changing the world around us would be simpler and more empowering than kicking those pebbles out of the path one at a time?
At the time, not so hookless. I gave a TEDx Talk about the first step in climbing the mountain of disability advocacy as a society. The itty-bitty baby steps of encouraging the general public to lay down misconceptions and engage in discourse with someone who is disabled. I encouraged people to unabashedly just ask about things they don’t know. I called upon the disabled and their caregivers to collectively lift the stigma of living with disability by being honest and non-defensive in talking about what it’s like and what they need. I traveled the country and spent hours and hours recording and photographing and connecting to regular people in extraordinary circumstances to put into pages and immortalize moments on glossy paper for them. I shined up a little piece of the internet for myself under a pen name to create and share in the most balanced way I could. People were believing in what I was saying. People were hopeful. I changed minds. Momentum. Or so I thought.
Through this process, I held the value of neutrality and being non-partisan. Everybody’s story resides in the same place within them regardless of the story’s beginning, middle or end. Allowing people to tell their story while providing them with unconditional positive regard served as a catharsis for both myself and my interviewees. I found it was not difficult to empathize with people whose world I didn’t fully understand or framework I did not fully agree. In social media, I shared stories of injustice or cruelty without solution or politics. Awareness is the first step of acceptance…it is not the end result.
Alas, I am not an advocate. I am a storyteller.
One year later, I am sitting at the same desk but in a very different place. I feel scared. Was I was horribly wrong about this genesis of readiness for change? It has been a challenge to remain non-partisan especially in a time when it seems that perhaps these stories sink to the bottom of the advocacy pile.
The other night as I sat hunched over my computer trying to put a cap on my 1 year experience, I tearfully told my husband we are beyond storytelling at this point. I am fearful of having too much opinion out of concern of not holding my neutral credo for the greater good. It goes against my nature as a social worker. There is a war going on between human rights, human entitlement and government in a narrative that is getting louder and undeniably self-serving to each individual yelling. This goal of reasonable human rights only has a matter of time before we are splintered into pieces again and we are fighting against each other get what we need. It is hard to see where or how this will end right now. Issues that are truly a big deal today may seem like the good-ole-days in the near future. I worried about the juxtaposition of storytelling in an ocean of endless islands of stories. I was feeling disheartened and selfish that evening that this project was down the tubes.
Instead of walking away like he might during a moment like this, my husband turned and said “What if this is about change for the better after all?” He went on to contemplate the lack of passion and purpose as a whole in this country in our lifetime. The things that divide us and crawl under our skin has created less listening and more waiting for our turn to talk. Or worse yet, NOT waiting for our turn to talk and yelling over the opposition instead. He optimistically reframed this unprecedented business-as-politics as the catalyst of the birth of this generation’s common cause. The most powerful man in the world and those who surround him believe that there are “alternative facts” leading the rest of us into a state of despair and confusion over the possibility of never understanding what is true or real. This is the stuff of propoganda and crazy-making.
“But…hasn’t that been your truth for years?” my husband asked.
He was right. Those of us who live with oppression in some way or another in this country have been working off the premise of alternative facts for a long time. At least those of us who are caregivers to those with disabilities who may not be able to speak for themselves, we are told over and over to accept half-truths or are simply told “no” for nebulous reasons when asking for inclusion, equality or safety. Or else we are dismissed,discounted or ignored. This is not new. Some of us sink into deep holes of acceptance of this and others of us jump up and down and yell as loud as we can. And sometimes we do both in intervals. It is through this collective place we can pull together instead of being one small group spitting into the wind while down wind from us is some other oppressed group covering both of us in spittle.
“I wonder if there will grow a common one big enough to make the noise it needs to? People as a whole are a lot more awake than they were…and maybe that is not so bad” he mused.
Regardless of what you believe or how oppressed or even how entitled you are, it is time. Listen calmly. Don’t wait for your turn to talk. Take the information you get from other people’s stories and learn from them even if you disagree. Even if you don’t understand. These words may help heal or give you the tools to fight even harder or maybe even change your mind. We can yell as much as we want in the faces of those who don’t want to hear….collectively it may eventually work…but individually, that will not change their minds in a world where people are desperately trying to cling to what they think they believe.
It is time. We all have a story. Kelly can tell you what it is like to bear witness to that listening from behind a camera first hand.
Or as she might tell you, it will make you woke AF.
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There are some days that my heart breaks selfishly a bit.
These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.
Running through Water 