Fulfilling Disabled Life
Today is my last day in Baxter's Harbour.
Catherine texts me:
"Hi there, neighbour. All is quiet here. I've been puttering. Patricia has been erranding. Everything feels strangely suspended with your cruel departure imminent. Perhaps a 4pm rendezvous for cookies and film?"
I am wearing sequins by the sea, the layering of scarfs for warmth and fashion kept me warm and delighted yesterday, and i sat at the shore for two hours. But today, it has slipped a degree colder and I am stiff with too many layers of fleece and still shivering, my fingers sting as I text back:
"It is so cruel. I am at the wave deck pretending I will never leave but I came too late and I’m already too cold after 5 minutes which is also cruel."
"Meet you in the meadow?"
The meadow is the warmest place outside in the afternoon, a waning pleasure as the sun sinks sooner in the day and gets caught in the brambles and is strangled. I crawl into the hammock and pull the wool blanket I had over my lap and listen to Catherine's wheels crunch the stones under tread as she approaches.
Meadow, crunch, neighbour, cookies, waves, film.
I go limp, deliberately surrender urgency, there is nothing more I need to do to be satisfied. For the past two months, I have been here completely. Fulfilled by the freedom my body had to roam in nature on a daily basis, the giant windows to watch the landscape change colour when my body didn't feel like roaming so much. The food we prepared and shared. The guests who came and brought lively conversations. The films we watched that gave us so many feelings and thoughts to explore and creative ideas of our own. Sun-basking in the afternoons with Catherine where we pulled at the threads of our interconnected life's work. Hers: Disability Rights. Mine: Disability narrative. I engage by taking selfies and telling stories and Catherine sits on committees and, in a way, also tells stories.
To have stories to tell, you need to receive (or create) them, first.
Recently a student journalist asked me: What is your best adventure?
I hesitated for a moment and she chuckled. "I bet it's hard to pick just one, you've had so many."
I find it hard to relate to qualifiers like 'biggest' and 'best' - adventure was meant to be a lifestyle, not a goal. My desire was to saturate my life with romance and glamour and sensuality and adventurous experiences.
Most of that is just who I am, I am adventurous. I need to get that energy out and into the world on a regular basis to be well. But there is a part of my urgent differentiating between a one-off goal and something sustained that, I think, was influenced by a recurring phenomenon from my childhood.
It was fairly common for me to have extravagant experiences provided to me (and other disabled children) out of someone's --or an organization's-- sense of charity. They were these big, special, one-off events executed with incredible energy and conviction.
It's a delicate experience to share because I don't mean to imply the answer is to stop creating those types of peaks with others, I love the idea of creating joyous highs for one another. And I do think that having a grand experience at all is how I knew I wanted it again, it gave me the hunger to go for more. But, in it's artificiality, I observed that there was an undeclared cost.
Over and over again I noticed a melancholy. To be fair, I am a bit melancholy by nature, it's the romantic in me, but I was curious about this feeling. There it was again when I was older, whenever there was some kind of romantic moment between me and someone who then later turned out to not want to be in a relationship with me. Something distinct from my sense of rejection. something alongside the confusion. Something strange. An alienation --not between me and another, but within.
Over time, I came to understand that there was a whole ...almost like a structure... formed around the activities of my life, in which it is assumed a disabled person --I-- would not live a fulfilling life.
What anyone means by 'fulfilling' in these types of projections is sometimes based in the reality of the struggles we face as we become adults and can't get educated or find employment, our disabilities unfathomably exacerbated by economic injustice and poverty, the unending social and structural barriers. But it's also sometimes entirely undefined. Fulfilling to who? Fulfilling in what way? The kind of fulfillment that is built up in the day-to-day, made of small achievements and steady growth and relationships over time? We cannot have that?
It is widely believed that a person with a disability will not *actualize.* Instead of asking 'why not?' society pities. And in response to this specific pity of an innately, inevitably, irrevocably and unquestioningly unfulfilling life --I felt as if people had manufactured peak experiences for me (as a disabled child) as a kind of compensation. As if they wished to be my fairy godmother. As if to say: "you are Cinderella. So, here, have this one night of life. of love. of excitement. of joy. but be home by midnight where you will become disabled again and spend the rest of your days cleaning cinders out of the fireplace for your confusingly envious stepfamily with only this memory to keep you warm."
When I was about 15 or 16 a man who volunteered with a foundation that granted wishes to kids with terminal illnesses encouraged me to make a wish of my own.
"I'm not dying," I pointed out to him.
"You qualify," he said.
"Disabled people are not usually dying in that way. But we are culturally futureless," @lisamarietheswede pointed out.
When your dress and shoes and carriage are all magically created for you out of thin air, they have a way of disappearing back into thin air. It's not and never was really yours. It's not really your life --as special as those moments are.
Which, proves them right. You can't create fulfillment if nothing you experience is yours, if your best moments have nothing to do with your own actions, or influence. But that's not because you *can't* learn to craft an experience for yourself, or because you aren't naturally doing so. It's not because you *can't* learn how to build up toward a meaningful peak, or how to expand on one to sustain it's essence in your life, or how to apply effort and in which direction and for what purpose. Not because you aren't already determining what is meaningful to you all on your own. But because your ability to develop those skills and express your tendencies is being frequently interrupted.
That's the structure I saw: that the idea I would never be fulfilled led to this pity reaction --this rescue, this magical intervention-- and those were part of enforcing the circumstances that *could* manifest the reality of being unfulfilled.
Could, as in, was definitely not certain.
Me being unfulfilled wasn't inevitable. That fate didn't exist outside their structure.
That's when I realized that the weird come down feeling after these lovely and energizing experiences was grief. But it wasn't my own. To some extent, we all experience grief after a peak. that's just our chemicals sludging their way back to earth after glory. But this haunting melancholy, it was the grief and pity non disabled people felt when they saw a disabled child and they were chasing away their grief by creating these joyous occasions 'for me.' Sensible, in a way. Don't we all chase sorrow from us from time to time? don't we all, at times, request that our loved ones perform contortion on our behalf so we may avoid pain for just a while longer? Wasn't I chasing away a grief when I would say 'thank you, more please!" with each occasion? But I was tacitly, and sometimes explicitly, being told that more was impossible. The only reason I was being given this special moment was because there was no other access to it. Which wasn't true.
There's no need to chase away a grief for which the cause doesn't actually exist.
I reflect on how, when I draw from events from my childhood, I remind myself that I am reaching back from the position of everything I know now. Things I didn't know then.
In those childhood moments I loved the adoration, being the centre of attention, wearing pretty dresses and having my photo taken, being filmed and interviewed. I loved the activity or the gift. I got caught up in the group high. I still love those same things today.
And, now I can look back and see the patterns and acknowledge how disorienting it was to have emotionally intense experiences with strangers, people who most often treated me more like a doll than a being, people who didn't really understand me or my situation all that well. People I had not known yesterday and would never see again, today were my 'best friends.' Non disabled people who expected a certain amount of praise for their actions. But who didn't want to acknowledge or address the underlying reasons I was so 'doomed' in the first place. Sure, we could all have fun together --why not? I love communal fun. But what exactly is heroic or noble or virtuous about not having the stamina and commitment, honest self-reflection --the 'ability'-- so to speak-- to help me actually manage my long-term challenges?
It was never my goal to have one big or best adventure, it was my desire to make it an ongoing part of my life. To build relationships with people who led adventurous lives and who would share that with me over and over again. It was my goal to be fulfilled by my own actions, according to my nature and opportunities. It was my goal to be an influence in my own life, and to cultivate strong relationship with myself, and the people who were as committed to me as I was to them. The answer to what is my best adventure so far is: the one that is ever unfolding --my life itself.
Catherine's property, at what she calls 'the edge of time,' stands as a symbol for finding other access to where you want to go. The paths from the house and bunkie to the shore were created over a long period of time, based on her use, her presence here, her desires. They are rooted to the ground with eco raster that keep the stones in place, prevents erosion, and gives wheels traction. But the paths are steep. I struggle with the elevation. So, at one point during my stay, Catherine called Trevor, her 'bridge builder,' to see if we could cut new paths and spread that elevation out.
"You can power up these hills now, but I'm thinking of you in 40 years," Catherine said, and then asked, "Where would you build new paths?"