Who do you look to?

A collection of 9 pictures of me at different stages in life indoors and outdoors in different outfits and with many different hairstyles. In some pictures I am teaching or smiling or laughing and in some pictures I am working at my computer or drawing at my desk.

Starting where we are: I thought about changing the language of the question. Could I honour the folks with vision impairment by not insisting upon eyesight as the source of knowledge? Must we look in order to know? The answer is no. But then I looked up (searched for) the definition of “look to” as a phrase, and found these definitions from a few different online dictionaries, and pulled them all together: 

look to

verb

1.     To seek inspiration or advice from someone.

2.     Turn one's interests or expectations towards.

3.     Be excited or anxious about.

In the spirit of these three ideas, I ask again.

Who do you look to?

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Forming reality is a constant collaboration. We are each other’s environment as much as the buildings we live in, the land we live on, and the social and political systems we organize. We encounter one another, and we encounter conversations, ideas, and images. All of this forms what we know to be reality.

The encounter itself is how we come to know it. Did we get an idea from a loved one, in a gentle conversation? Did we come across one image of happiness or success so repeatedly, and so casually, that we didn’t even consider there were others? Did we learn about ourselves through someone else’s behaviour towards us, however unconscious it may have been? Did we choose what to believe, on purpose?

I’m interested in all of these things about myself, the way an archeologist tries to understand a culture from the past. Where did my concept of me come from? How did I solve problems when I was young? What beliefs and limitations was I surrounded by, steeped in? Who did I have to look to, as I formed my understanding of the world?

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When I took driver’s education classes, they asked us, “when did you start learning how to drive?”

Surrounded by surly and self-conscious 16-year-olds, I was the first to raise my hand after the reluctant pause and say “the first time I sat in a car.” The teacher was surprised, clearly expecting to deliver that pearl of wisdom herself. If we think that learning is only a conscious act, something we choose to do and work hard at, then this idea — that we are passively learning without even trying — would be revolutionary. Yet, it’s also obvious. Like so many things we take for granted, the passive learning we do is not talked about nearly as much as the valiant effort of applying oneself to graded schoolwork, so it fades into the background, even though we are capable of realizing its presence at any moment, feeling our lived truth of it as soon as the idea is spoken.

Sure you can work hard to learn something. But the things you learn most easily are the ones you don’t even notice you are learning, and that learning goes deepest.

I recommend you forge your own intimacy with the science of neuroplasticity. I’ll write about at some point, but it won’t be enough. Seek it out, if you’re curious. It’s always relevant, and always evolving.

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When I was a young whippersnapper, getting all sorts of unsolicited advice from adults about how to pursue my artistic talents as a career, I was told over and over again to find my personal brand – the thing I could focus on and get really really good at, an aesthetic identity that people would seek, and that would make me indispensible.

As a millennial, I’m part of the bridging generation between the pre-internet world, and the digital ubiquity that we now have. I was a kid when computers came home. I was a young teenager when the internet went corporate. Adults were giving me advice based on the promise of the internet age that they had not experienced themselves. Adults who had learned to use the internet in their 20’s and 30’s were now telling me I had to do something at age 16 that they had never done: grow into adulthood as a brand of artist, turn my personality into a product, get a website, post my portfolio, find my niche and sell it, the faster the better. Reflecting back, it’s bizarre and pressured and doesn’t even make a lot of sense. Fuck.

Since these adults were not walking the walk while they got busy talking the talk in my ear, I had to search elsewhere for examples. I could perceive the visual brand identities of others – personalities, celebrities, even artists in my community were everywhere around me, and it was easy to recognize their thing from the outside. What I never found was somebody who could show me what it’s like to construct a life as an artist from the inside; how it felt, how to navigate it, what might guide me, how to remember the purpose of art while the outside world pressed in.

It was all trial and error, all conversations with other young people flapping about trying to find themselves and forge an artistic brand at the same time.

Who could I look to?

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Getting sick, in any form, is an isolating experience. People around you don’t deal with your sickness very well. Lots of trial and error, only there isn’t always learning on the other side when someone fears what you’re going through, and tries take care of you at the same time. Sometimes the people around you just panic, and panic some more, and avoid things, and keep doing that until you can’t take it anymore. I hate this, but…in my life, the people who panicked about my wellbeing rather than facing their feelings, they couldn’t figure that out before I needed them to stop. I had to leave them because I couldn’t be sick, and take on the labour and stress of fielding their emotions and behaviour. Illness is enough labour.

But the isolation of illness is not just done by others. Isolation is part of illness itself. If you’re contagious, isolation is non-negotiable, and that’s actually a lot easier in my experience. The daily negotiations, weighing of risks and outcomes, valuing qualities, and pushing limits to meet the demands of life (usually financial ones) — those negotiations are draining. And then there’s the demand of symptoms. It takes a lot of energy to be in pain. Being sick requires rest, it demands quiet, sleep, boredom, low stimulation. Usually, this state and all its complications is temporary, but for some of us, we live most of our time that way. It’s isolating when the people around us don’t understand all of that.

My chronic pain and my extreme autistic burnout are both long term. The burnout could shift, if I respect my brain’s current restrictions, but I can’t function in the present if I’m holding that hope as a goal. Me, I’m very pragmatic. What is here, what is now, that is my main concern. It’s not a week or a month that I need to navigate fluctuating energy levels, sensory sensitivities, pain flares, profound exhaustion, and other super fun and flirty symptoms; it’s a mysterious timeline determined only by my body and brain, and I will not know the change as a lightswitch turning on or off again. It’s slow, daily attunement, trial and error, grief and acceptance, for always. And yes, I spend a lot of time alone, but also, I am committed to having a beautiful, meaningful life.

How does one make meaning through sickness? How does a sick life work when most of our wisdom for illness is focused on the short term? How do we know what to do, how to think, problem-solve, plan for the future, respond to the present, advocate for ourselves, build a very specific life of personal accessibility and health, without role models?

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There are plenty of us out here. Disabled folks, neurodivergent folks, injured and chronically ill folks, and more, who are living in ways that nobody demonstrated for us, that we are learning as we go.

The price of a miscalculation, or the trial-and-error process, when you’re sick? Sometimes it costs you days, weeks, or limited essential supports if you get it wrong. It can be as simple as working for an hour after you notice your body starting to complain, and you’re in bed for a week, your projects on hold. Sometimes you have a scant few of hours of help from somebody, and you have to calculate how best to use that help, but you forget something essential. You realize your mistake, but it’s too late, the help you’ve received didn’t do what you actually needed, and you can’t get that help again. Oops.

Mistakes are a huge part of life, as is failure. What I needed along my journey of adulthood and disability was an example of life that was practical for me. I can only imagine how helpful it would have been to see an adult with neurodivergence applicable to mine living on their own terms, differently. I needed to see someone engaged in the work to undo the internalized ableism we’re all given as we grow up in an ableist society. Someone to give me advice about how to navigate pain, when to push and when to stop, when to seek medical advice and the usefulness of creating a paper trail of my horrific experiences with the medical system. I needed someone to show me that sometimes it’s just a mess, and you need to hold each other through it. “Your symptoms are not your fault” would have meant the world to me.

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I started learning about shifting my mindset in my early thirties. It’s unbelievably powerful — unquantifiable, in fact. My surroundings as a child had modeled a lot of unhealthy mindsets, perspectives, and skill sets for me to learn from without even trying. I unconsciously practiced and dare I say, perfected the skill of expecting the worst, learned helplessness in the face of adversity, and anger. When I started to make conscious choices about how I wanted to conceive the world, and myself, and to form personal values to help me navigate the challenges I face, I started to feel more like…me. Suddenly I wasn’t just a collection of deprivations, wafting through the world on the fumes off my anxiety machinery. I was something to explore. Like a wild landscape to discover.

When you’re trying to change your mindset, it feels very theoretical to start believing something new. The old stuff has a ton of evidence, lived experience, to show that the old reality is strong, and the most true. For a new mindset to become belief, it has to be shown and felt even more than it is told.

The skeptical mind likes to say that it’s being realistic.

“Sure that sounds great, but it’s just not feasible.”

“Well that would be ideal, but it would never actually happen.”

“Yes, I would prefer that, but realistically…”

The idea of realism as the counterweight to fantasy is very powerful. There are many ways in which imagination and dreaming are perceived as dangerous, and there’s wisdom to those warnings; our shared reality is what allows us to connect, and how much we actually share with each other is tenuous at best. We must hold the parts that we can experience together, to survive the parts that we must experience alone.

However. Dreaming is not the antithesis of reality, but the birthplace of it. Imagining is a beautiful part of being alive. It’s the spark of creativity. “What if?” is not a naïve question. In a culture that thrives on inequality, oppression, victimization and cruelty, it is a necessary one.

I choose to believe it is realistic that we can treat each other beautifully, truthfully, honourably. I choose the conviction that fighting against harm is worthwhile, and that fight can succeed.

I believe those things with my mind because I want them to be true, and I behave as if it already is. I believe them with my whole body because I’ve lived it.

As a welcome contrast to impoverished care endemic in capitalist culture, I have received the beauty of care that is possible when we subvert what we’ve been taught and encourage moments of support rather than structure our lives to avoid needing it. I have been part of activist efforts that did not succeed yet bonded my comrades and I in the fight, creating so much friendship and connection in the furnace of our shared values, in celebrating our experiences. I have been loved without shame, or scarcity, or pressure. It put me back together.

And still, I live in the world that taught me otherwise, where people around me reflect these teachings unconsciously on a daily basis. I don’t blame anyone for things they don’t know, and I want for them to be held the way they need. If they have never been given the option to even KNOW what they need, let alone receive it, then there is a lot of caring unlearning to be done. For me, I didn’t need to change the whole world to start believing that better options exist, are realistic, even easy to do – I only had to taste a drop to know what I wanted to drink.

Now I spit out the poison that is served to me as inevitable, indestructible, too big to fail. I even want to laugh at capitalism’s bullshit, because nobody can ever take away from me the beauty I’ve known. I will spread it everywhere I go, and live it every day, in my messy human body.

I want sick role models. I have some, and they humble me: Imani Barbarin, Alice Wong, Johanna Hedva, Ismatu Gwendolyn. These women have kept me breathing.

It would be the honour of my life to be among them as a role model for others. What can I contribute? What can I give, when I’m so sick and tired?

Remember the landscape? The wild terrain of me that I awoke to? That’s where I look.

I look to the journey of my learning, and feeling, as an offering. I want to show you one example of a life lived with love for myself.

You know the slogans, and they’re good, but there’s a wide gap between a lovely idea and a change in your foundational beliefs.

Live authentically! Yes, but how?

Practice compassion for yourself! I want to, but how?

Listen to your body! I know! But how??

I told you that I’m pragmatic. I like the day-to-day, the details. I enjoy making maps, lists, guiding questions, orders of operations, tasks, delegation, and above all, the basics. I document, reflect, and create plans for action, with space for feeling.

This is what I want to contribute. I don’t want to perform some boss’ list of duties to make money, I want to get paid for the studious and thoughtful work I’ve been doing my whole life, to stay alive. My work is to show you how I do things. I write, and I post on social media, to demonstrate a way of living that works for me. Whether you learn from it or not, whether you like it or not, is up to you.

Sickness is isolating. Disability is demanding. I’m not asking anything of you, I’m not even concerned with what you think of how I’m doing things. I just want to be one example of a person living out a sick, disabled, privileged, fraught, complicated, easeful, difficult, painful, artful, messy, loving, miserable, thankful, spiteful, fucked up, frayed, contradictory, and catastrophically beautiful life.  

I want to show myself becoming me, so that you have someone to look to, as you become you.