1
An angry father once accosted me after I told his teenage son that he could not pray over my child. We were stopped at a highway rest stop; I was sitting next to my son, lying on a small quilt in the grass, while my partner ran into the restroom. The boy hadn’t said hello, hadn’t asked my toddler’s name, hadn’t introduced himself. His presumption—that he knew what my kid needed, that he had a line to God that I didn’t—turned my stomach to acid. The father-son duo wore collared polo shirts, Levis and had tight cropped hair. Despite my “no,” they reached out their hands to begin a prayer.
The day had been lovely. We were traveling home, up I-5 from Portland to Seattle, on a warm afternoon. Lucas was looking at the flowers in a way only a three-year-old who can’t lift his head off the ground might. His ventilator tubes snaked along the ground, connecting to the artificial airway in his neck and raising and lowering his chest in perfect rhythm. I love lying down and looking at the grass the way Lucas does—peering through the strands with an inchworm’s perspective on the world. I had been handing him the dandelions that grew out of reach, plucking them and placing the feather light stems in his soft, soft fingers, when the aggressive praying pair approached.
Some days I am charitable. On another day I might have taken the time to talk, to introduce Lucas. I might have tried to blow the young man’s small mind by pointing out that Lucas might be just as happy as any other little kid. That he moves differently in the world, and that’s OK. That maybe he doesn’t even want healing from his chronic, uncurable disease.
Their forcefulness, though, their unwillingness to see us beyond first glance—to even ask his name—enraged me. Travel was hard enough for us. I wanted to take my kid out in the world and be left alone. Maybe a quick hello, maybe a compliment on his penguin shirt from the passing stranger. And then we all agree to move on. This is the social agreement, I thought.
The aggressive praying men left when Burke came back from the bathroom and backed me up. We joked later, reimagining the scenario where my muted ferociousness turned violent. We told a story of Burke walking out of the restroom, seeing me pulling back my clenched fist, and then him, in movie-style slow motion, running across the lawn to hold back my punch. Burke often softens me with humor, helping me let go of things that I would otherwise stew on for days. Weeks.
The rest stop incident was ten years ago, so I guess I don’t let go easily. But every time we leave the house, I am aware that we are being observed. Some days I want to stay home.
2
Lucas is thirteen now. When we go out for a walk (he says we should still call it a “walk,” even though I walk and he rolls), I see strangers’ eyes casually passing by us, then involuntarily looking back at us and then jolting away again. People wait until we’ve passed to turn and watch us from behind.
They watch us in the store, in the parking lot, at the movie theater, at the beach. They approach us and tell us they are moved and inspired by us. That we are such good parents. There are two little boxes for disability narratives: pity and pedestal. When people tell us what they think of us, they speak of inspiration. We are so amazing.
Sometimes I watch them stare, and I read the other narrative in their gaze. The pity. When our whole family is out for a walk I lag behind, holding my daughter’s hand as she takes her little-kid time to walk down the sidewalk. She and I end up far enough behind that strangers don’t register the four of us as a family. Then I can watch them openly gawk at Lucas after he passes. He looks so unique, my kid with his extremely weak muscles that have not been able to resist gravity all these years. Gravity has pulled his face long; his weak and unused muscles make him skinny under his baggy clothes. His neuromuscular disease renders his body reliant on assistance with everything, even breathing, so his giant wheelchair is laden with medical equipment, wires and tubes people have never seen connect directly to a human body before. I would be curious too. But it is not just curiosity that makes them stare. I know sometimes they are also secretly relieved in looking at us. They might not pray, but they can think, whoa, my life could be worse. It is terrible being made into someone else’s measure of low.
3
I try not to let the awareness of their gaze distract me from being present with Lucas when we’re out together. I try to let them imagine what they will without needing to perform our disability. But I feel the tug of their needs. I imagine what they’re seeing, and I want it to look good.
There are moments that their gaze offers me a meta-cognition, like the witness consciousness I seek in meditation. Through their eyes, I imagine seeing what is present and visible: there is an adult pushing a lanky teenager in a wheelchair covered in stickers through the park. The adult is leaning over from behind, her face in his hair to hear or be heard. They stop and look at a tree. She pushes her foot down on the wheelchair’s brake, then steps off the path to collect pinecones, which she then holds up for him, each one six inches in front of his eyes. He does not lift his arms – she is arms for both of them. They seem relaxed with each other. She uses a machine hanging off his chair, inserts tube into his mouth. The machine is loud, but they don’t pause their conversation, their bodies making these tube-to-mouth movements so easily that it looks second nature. They are a kid and an adult in an unusual dance, but her movements look like muscle memory. They look like a parent and child enjoying a walk in the park, one with a body that needs different kinds of assistance than most.
I feel proud of this projection, this story others witness. It feels important to me that they know: we have fun within the confines of our bodies’ capabilities. In fact, our enjoyment sometimes feels peak, pinnacle even. The other parents in the park are sucked into their phones, posting pictures of their kids or reading the news, the texts, the work email. I am present—my limbs barely enough to keep Lucas’s chair moving, suction machine operating, my body bringing the world closer in. In these moments, I am not performing. I am just there with my kid, attentive, generous, grateful. Some days I really am the parent I want them to see. Some days they are not wrong if they see a family that is happy despite life’s obstacles.
4
People in disability communities sometimes make a distinction between visible and invisible disabilities. We talk about this in our family, since many of Lucas’s peers in special education at school have more social, cognitive or behavioral differences, while his uniqueness and barriers are so physical.
We live in such a visual culture. We believe what we see. Disability justice artist and activist Aurora Levins Morales explains that as a person with an invisible disability, she constantly faces doubts about her requests for access. She struggles to convince the world to believe her when she asserts her body’s needs. But, she continues, people with visibly obvious disabilities don’t make out any easier. They have to constantly prove to the world their mental capacity, their worthiness of a life of dignity, that they are as human as anyone else. So there are differences in the lived experiences of different kinds of disabilities, but the disability community casts a wide net because people in both categories must struggle to make the world care about them and their needs. Must struggle some days for access to the most basic survival.
Lucas is in the second category. His disability is so extremely visible. I hate the idea that we have anything to prove. And I can’t shake it when we’re out.
5
If they are going to watch us, I want them to see a more complicated picture of us, a more complete picture. But I don’t know if I would trust them to understand—to not further other us—if I let them see.
Some days I feel like a terrible mother. Some days we are not a shining, happy disabled family. I get tired and I start to resent the work that comes with caregiving. Some days I look at those parents, parents who have the luxury of turning to talk to another adult while their kid scampers away on the playground, with envy. Some days, when we’re at home and out of sight, I want to shout at my kids to just give me a few minutes to finish what I’m doing. Some days I do snap at them, but then I feel the waves of guilt, feel I’ve abandoned Lucas. Even though he can do some things alone—a few games on the i-pad when it’s in just the right position; his homework, when the teachers have uploaded the accessible digital versions. I still feel awful because, if I’m snapping at him, it’s because he has asked me for help with something he needs.
I do not resent disability or our bodies’ variations. But if I let people see that I get tired of the intensity of Lucas’s needs and the fact that getting him the care he needs, which is more than Burke and I can humanly offer, is so complicated, will they understand the difference? I resent the months we spent this summer hoping and worrying and essentially begging through social media for people to help us find a homecare nurse to cover the shifts we need. Will they be able to see that the problem is not Lucas’s body? I resent the low wages for home care workers, not my son’s need for them.
When I am at the park performing/not performing happy-disabled-family, people see me picking up leaves or pushing a wheelchair, but they can’t see how guilty I feel when I get to the place where the trail starts to roll down hill and I have to calculate if I have the strength and energy to push his heavy chair back up. My mind spins. How many times have we taken Lucas on a walk around the same five-block loop through our neighborhood? I don’t want them to see the struggle because I am afraid it is confirming what they already imagine about our disabled life: that it is hard. And that we are other.
What will happen when he’s even bigger, I wonder, when even this easy loop around the park gets harder for me to manage? Lucas is an amazingly content kid – he enjoys the accessible walks and hikes we take, and he doesn’t seem to worry about things we can’t do. But I know the things we’re not doing, and the wondering if we could do more to get him more places, more experiences, weighs on me.
My mind spins a familiar loop: What if we advocated to get him a power wheelchair? What if we demanded, got a lawyer, challenged the system that says insurance won’t pay for a manual wheelchair and a power wheelchair? Lucas needs the first chair, and the second might allow us to go more places. Do we spend hours and days and months fighting for something that might not even be functional, given the architecture of our house? A power wheelchair might not be functional for Lucas, given that he can’t lift his head to look down and see where the sidewalk drops, where a few inches from sidewalk to street could flip a four hundred pound wheelchair in an instant. Or do we use our time to advocate for the other things he needs? The paraprofessional assistant he needs to make his school work accessible? And inclusive after school program so that we, his parents, are not his entire social life? The repairs to the manual chair that might alleviate some pain, but that insurance denied on a technicality?
The churning, the worrying — have we correctly triaged his needs — squeezes down and in on my chest like a thousand pounds of wet sand. Some days, when I let my mind spin the list of things I haven’t done, needs I haven’t met, I can barely breathe. What if they saw that?
6
When Lucas was ten years old he was obsessed with Classic Rock. And his obsessions never stay within the canon: Metallica, Ozzy Osborne, Stairway to Heaven. Lucas goes into the minutia and the obscure. At the height of his obsession he could tell you the order of Black Sabbath’s albums and who was drummer and lead singer on each record. He could name all the members of The Who and Led Zeppelin (he named our friend’s four miniature donkeys after them, my favorite being John Bonham in Lucas’s best British accent), and he could tell you who had the loudest, longest recorded scream on a rock song (Roger Daltrey on “Won’t Get Fooled Again.”)
We moved to Seattle when Lucas was two and found a loose collective of people doing disability justice work. Although the other participants were adults with disabilities and chronic illness, they welcomed our family at events. They saw Lucas as one of them, even before he was old enough to see their shared identity. At the height of Lucas’s Classic Rock phase, some of our new friends had the idea to throw a karaoke party that featured Lucas’s favorite songs. They offered to have the party at our house, a space that they knew would work for him.
Lucas usually hates parties. He can’t run off with the kids and play. Even if we could push him to the place the kids are, he can’t do what they’re doing, and he has to stay in his wheelchair and next to us. So at any social gathering – dinner with friends or a potluck at school –Lucas is stuck sitting by his parents, impatient with our adult conversations. We try to include him, but he gets bored and wants to go home. A party planned around Lucas was exciting. Thrilling, even. Lucas’s needs would be centered.
Organizing an event for a group of people with various disabilities is complicated. People had chemical sensitivities, mobility impairments, chronic illness with flair ups that were unpredictable. One friend had a long list of severe allergies, and we were planning to eat together. The organizing for our four families to gather took months of a growing email string, but we did it. We gathered with potluck food that would work for everyone and cued up YouTube karaoke songs on the TV.
Nine-year-old Lucas, and his little sister, barely four, had learned Joan Jett’s “I Love Rock-n-Roll,” so our family kicked off the singing. We held up a cardboard tube-as-microphone to Lucas, and he sang in his muffled, quiet-but-enthusiastic voice.
Lucas was happy at first. But his intensity of focus meant he assumed and wanted everyone else to focus with equal measure. Side conversations drove him crazy. Our friends were excited to also see each other, so they stood off to the side catching up. Lucas was horrified, and his quiet, slurred voice he kept asking and demanding, “Why isn’t everyone singing? Everyone should be singing!” Big, frustrated tears ran down his reddened cheeks.
Lucas also has a visual impairment, so his chair was parked front and center, near the screen. And because his voice is so quiet and slurred, no one else noticed he was upset.
It is hard to know as his parent—do we amplify his kid voice and demands, making sure people hear him? If he can’t throw a disruptive tantrum or storm out of the room, do we somehow enact that frustration for him? Or do we soothe him like any other parents might tend to their frustrated kid, asking him to balance his desires with the wishes and needs of others?
The party had wonderful moments. Another kid passionate about old folk songs—which Lucas also liked—sang “If I Had a Hammer” with exuberance for every single syllable. People gathered around Lucas and sang along to Heart and David Bowie and Journey hits. Lucas got to be part of a party that—sometimes—worked for him.
It was imperfect, but still. The premise that we can try to create events that are radically accessible, that take into account the needs of everyone involved, is medicine for my tired heart.
7
I am so grateful for disability culture and the principles of disability justice—this incredibly creative commitment to taking all our bodies’ needs into account and creating events or meetings or communities that work for everyone. These critical principles of interdependence. Of centering the needs of the most marginalized. Parenting and caregiving, though, complicates the paradigm. I would like to always give Lucas what he needs. Sometimes it is medical care. Sometimes it is being the pusher of his chair or his fetcher, bringing him to the world or the world to him. Often it is doing the physical or administrative work of adjusting and adjusting and adjusting. Adjusting his body to a difficult world, the world to make space for his body. But I am not without my limitations. I would like to honor my body’s need for rest. For being more than a parent. I love imagining and working toward a world filled with webs of mutual care, a world where we meet each other’s needs, and I mourn that we don’t live in that world right now. Which is why, so often, Burke and I try to summon super human strength to give Lucas everything he needs.
Every parent knows the conundrum, but when your child is nearly paralyzed the stakes are higher. There was a heavy summer day when Lucas and I were out and something was off for me—I was abnormally exhausted, and my body said I could no longer prioritize his needs over mine. My body demanded I stop and lie down in the grass, hoping to recharge like a dying cell phone. I hated the idea of resting, resting in public, where people could see me not tending to my child. Not performing happy-disabled-family.
When I first encountered women’s studies in college in the 1990s, I loved the idea of gender as performance. I loved the way a concept could pull back a veil and help me see everything in a new light. But also, I felt uneasy with this sudden awareness. I wondered how much my own sense of self as a girl and woman was shaped by the expectations of others? Is this shirt a performance? This gesture? The words I am speaking? I looked around at parties and saw everyone performing, and I was so overwhelmed by the question of how to find authenticity that I often stayed home instead.
8
I want to leave the house without feeling like I need to perform. Lucas doesn’t seem to care. He either can’t see or ignores the stares. Maybe it is because he has always lived this way—so visually interesting to the world—and I have not.
The pressure I feel to perform mounts, though, because we are not well represented. I worry about Lucas never seeing a character like him in a book, a movie, or a T.V. show. He hasn’t met an adult with a trach and vent like him since he was a baby. People like him, families like ours, aren’t visible in part because his kind of disability is rare. We’re not visible because of the physical challenges of getting up and out of the house each day. And then, once we’re out, there are the constructed barriers to easily and safely rolling around a city. And there are the stares, the comments. The way we are consumed or rejected by the watchers.
There are elements of our disabled life that are not rare, though. Plenty of elderly people and people with injuries and disabilities need assistance getting out of bed, getting dressed, or going to the bathroom. When was the last time you saw a scene on the big screen of a family member or caregiver helping to bathe or dress a disabled person? Putting Lucas’s clothes on—stretching the neck to draw a shirt over his head without squishing his eyes, pulling the arm hole out to just the right angle so we don’t displace his shoulder as we coax his arm into the sleeve—is a task that is both intimate and mundane. Maybe if these images were more prevalent I wouldn’t feel like I needed to be a diplomat for disabled families so much when we just want to go out and see the fall colors.
9
I have thought over the years about the aggressive Christians, wondered if they thought they had a special direct line to Jesus for my near-death son. I have wondered if they thought my heathen ways were going to keep my baby out of their heaven.
I wish they had been interested in my reckoning with a God I barely knew. When Lucas was a baby and we were tasked with keeping him alive in our apartment, there were sweet moments of ease holding him and reading board books—if you can ever call holding a fragile baby on life support easy. There were moments of adrenaline spikes, of not knowing if we would keep him breathing with the efforts of our own hands.
When things were quiet, when the baby on the ventilator surrounded by life-saving medical supplies fell asleep and Burke left the apartment and I was alone, I would keel over in pain, asking the God I didn’t really believe in what I had done to deserve this. What had I done wrong? This question, this pleading with the universe to answer for itself, to explain its dis-order, felt like a breaking. I felt awful and ugly for asking the question, felt shattered as I pleaded for an answer.
But one day, like a clearing of a fog, I felt myself not broken down but broken open. I knew, not from a voice that spoke words but in a clarity that felt divine, that the things that happen—natural disasters or the accident that killed my father or the unique genetic sequence that would drain my son of strength for movement—had nothing to do with God’s will or karma or deserving or a cosmic order. This shit just happened sometimes. The realization felt both minor and magnificent. I could let go of asking questions about the why of my child’s disease, and by extension, my child. I released any idea of cosmic punishment. That moment, that surrender, that dropping into an ease of loving my kid exactly as he is, was my experience of God. If I could have shared that grace with that father and son at the rest stop, I would have.
10
If you are going to stare. If we must be so visible. I want you to know some of the depth, the multitude, the layers of us.
I want you to see how long it takes to get Lucas ready to leave the house: getting his braces on under his clothes, using the lift to get him up into his chair. How much time it takes to get his glasses on, his hair brushed, his teeth brushed, his shoes on, his head adjusted, his supplies gathered and thrown over our shoulder, just to get out the door.
I want you to see the frustration of the planning, the time we spent figuring out: is there a parking lot with a place to safely unload a wheelchair, is the trail paved, will there be a place to lie down if he needs it? And then the hours fighting in insurance hell. I want you to watch as Burke tells me that the wheelchair repair company won’t let us purchase out-of-pocket a $200 part that Lucas needs urgently to replace a broken component. Watch us as we feel our powerlessness, as I curse the systems and Burke goes McGyver on the internet, finding a person selling a similar chair on eBay. Watch as he exchanges messages, reports that they are willing to take their chair apart and ship us the wire we need. I want you to see the amount of time we spend on the inane administration of disability in a system that does not care if my child has what he needs. Feel with me the rage at knowing the “health care” system withholding care doesn’t care if my child lives or dies.
And I want you to stay long enough to see more. That living with disability is painful sometimes, but also beautiful, too. To see that while it’s not a precise equation—more effort does not always equal more pleasure—sometimes there seems to be a correlation. There are times when we finally have all the other tasks of caregiving done and we’ve set up our big screen right where Lucas can see it to watch a movie, or when we get all four of us into the backyard on a summer evening and watch the tears of laughter form at the corners of Lucas’s eyes when we read a well-placed poop in a Madlib, or when we manage to get Lucas onto a hardpacked forest path that leads us high up on trestle-turned-trail curving through the Douglas Firs with the sound of roaring river below and a view of mountains for miles. In these moments I wish people could see our joy, our heart-overflowing contentment, our deep happiness that can’t be disentangled from the struggle.
Krista Lee Hanson lives in Seattle, home of the Coast Salish people, with her partner and two children. Her work has appeared in The Write Launch, Rad Parents anthology, and forthcoming in The Rumpus. Krista loves helping things grow: wild yeast into bread, seeds into gardens, audacious ideas into organizing strategy and piles of paper into stories to be shared.
Photo by Torsten Kellermann