* * *
I’m twenty-four, recently divorced, and finding my way through the daily tasks of living on my own. I’m leaving the grocery store with a giant tote bag on my lap where I’ve arranged the tidiest pile of grapefruits, cartons of milk and yogurt, boxes of cereal and microwave popcorn. I’m proud of my grocery stacking abilities. I’m also well aware that the teetering tower of groceries looks precarious to onlookers and part of this ritual includes a series of breezy and bright “no thank yous” to the inevitable offers of help. I decline the help for several reasons, like I am truly doing just fine; bringing someone else into this dance would actually be more difficult than simply completing the routine task myself; and I love the feeling I get when I fill my giant tote, transfer it to my car, lug it into my apartment, and put each item into its designated corner in my cupboard. I know it looks like I don’t, but really, I’ve got this.
On this particular evening, the light is fading and the air feels cool on my cheeks. I’m almost at my car when a man the age of my dad kindly offers to help me. “Oh, no thanks!” I say. “I’ve got a whole system.” I nod toward my passenger seat and swoosh my hands back and forth. It’s elaborate, and I don’t want to teach you, I’m trying to say.
He eyes me as if I’ve just claimed I’m about to jump clear over my car. “All right,” he says, taking five steps back to lean against the car parked beside mine and crossing his arms over his belly. His eyes don’t leave me or my groceries.
I start my routine: put the tote on the floor of the driver’s side, transfer from my chair to the car, take the wheels off of my chair and throw them in the back seat, pull the frame of my wheelchair over my body and place it into the passenger seat, and finally, lift the giant tote of groceries over my body to nestle in the frame of my wheelchair for the drive home. A little involved, yes, but no more so than flossing your teeth or getting dressed in the morning or doing laundry—once you’ve done it twenty times, you don’t even think about it.
I try to ignore the weight of the man’s eyes on me, but I feel my hands start to shake. Please just go away, I beg him silently. My temples and upper lip feel damp. His presence feels like a challenge, a threat, a bet that I’m bluffing. I’m rushing and fumbling, but I’ve gotten through all of the steps except the last one. I’m trying to pull the grocery tote over my body, but it keeps getting stuck, and the more I pull, the more frantic I feel, the harder it is to breathe.
“Actually,” I say, finally using my voice. “You’re making me really uncomfortable. Could you please stop watching me?”
Without a word, he walks to the other side of the car and stands with his back to me, still no more than fifteen feet away. So I can call out to him when I inevitably face the reality that I can’t do this task on my own? I start pulling out each individual item from my tote and tossing it toward the passenger seat. I have to get out of here. The bag is made smaller, I yank it up and over, slam my door shut, and peel out of the parking lot. I make it through two lights before tears start pouring down my cheeks.
* * *
I’m twenty-seven, living the life of a worn and weathered graduate student. I’m sitting alone in a busy coffee shop, earbuds tricking me into believing I’m invisible and alone despite the fact that every table around me is occupied. I’m in the throes of grading stacks of freshman English papers. As a girl nears my table, I keep working, hoping my busy fingers clicketing on the keys will drive her away, but I can see her in the periphery, standing within an arm’s length, her smile bright and hopeful. I yank out one earbud and look up.
“Hi, I’m Lydia!” She beams.
“Hi, Lydia,” I say. I smile, too. I’m hoping it’s the kind that says, You are intruding, but I am being patient with you.
“What’s your name?” Lydia asks.
Why would I tell you my name? I think. “Rebekah,” I say.
“Hi, Rebekah. I was sitting at that table over there,” she points to a spot across the room, “and I felt God put it on my heart to pray for you. Could I pray for your healing to be able to walk?”
Her smile is steady and sweet, and my head explodes with the word “No.” No. No. No, no, no, I do not want you to pray for my healing. As if my “happy ending” won’t come until I move from place to place with legs instead of wheels? Lydia can see the effects of childhood cancer on my incapacitated legs, but she can’t see anything else.
She’s taking a risk with me—reaching out into a world of strangers with an attempt at what I know she sees as kindness. But in a room full of all sorts of bodies, she has singled me out as the Defective, herself as the Pipeline to My Restoration. “Oh, no thanks,” I say. “I don’t think I’m comfortable with that.” I’m feeling very proud of myself for saying no. No is a newer word in my vocabulary, and it gives me a surge of pride and guilt to use it now.
“I don’t want to do anything that would make you feel uncomfortable,” Lydia says. “Could I just pray a blessing over you?”
I pause. I reach for my no-word. But who says no to a blessing? I don’t want to be the scowling woman in a wheelchair, raining on the parade of a smiling, optimistic do-gooder.
“Okay,” I say.
Lydia puts a hand on my shoulder; my stomach reaches for my throat. Does she have to place her hands on me? In fact, why does she have to involve me at all? Couldn’t she just as easily send a quick prayer from her seat? People are starting to look at us.
Lydia begins her prayer. “God, I want to pray a blessing over Rebekah this afternoon.”
I stare at my hands in my lap, avoiding the glances at the table of med students to our left and an elderly couple to our right. What do they think of the spectacle unfolding in front of them?
“You love her more than all the stars in the sky and more than all the sands on the beaches,” Lydia continues, her hand still resting on my stiff shoulder. “God, I pray that you would bring healing to Rebekah . . .”
Wait, healing? Healing, as in the prayer I said “no” to?
“Bring healing to Rebekah in whatever form she needs to be healed.”
Very nice, I think. Such clever maneuvering. Maybe you’ll get your way, and I’ll rise from my chair and walk across the floor yet.
“Amen,” she finishes.
“Thank you, Lydia. That was really kind of you,” I say, loathing myself as I express gratitude for the very thing that has left me feeling so small.
Why can’t I allow her to know how she has made me feel? Am I protecting her, or am I protecting myself? Lydia goes back to her table, and I stare at my reflection in the computer screen feeling empty. Stop being dramatic, I think. A sweet girl prayed a blessing for you. It’s like you’re pouting about the kittens cuddling too hard. And yet, my throat tightens, and my eyes well.
* * *
These stories are just three of many sprinkled generously over my past thirty years. They capture a brand of self-serving kindness that seeks to fuel an ego, a kindness interested in claiming the heroic role in the story, a kindness that hardly notices the actual consequence of the “good deeds” being dispensed. Like holding up a metal rod in a lightning storm, I run a risk of being struck by this version of kindness whenever I leave my house.
This is the part of the essay when some readers start furrowing their brows. “So how am I supposed to be helpful? Are you telling me I can’t open the door for a disabled person? I open the door for everyone! How do I know when someone does or doesn’t want my help? What are the rules?” These inquiries remind me a bit of the kinds of questions that come up when we try to talk about sexual consent. Human beings are complicated, and communication can be nuanced. “No, please don’t. This is making me uncomfortable,” isn’t always expressed directly through language. The point here is to pay attention to the human person in front of you. What signals are they giving you? What expression do you see on their face? Even if this isn’t intuitive for you, pay attention to their eyes—are they avoiding your gaze or looking toward you like they want to e
ngage? If you really can’t tell, you can always ask, but if someone says, “No thank you,” listen to them. You might get it wrong sometimes, but please don’t let the discomfort of “messing up” make you throw up your hands and leave this conversation. Because this part right here? It’s not really about you.
This deeply felt resistance I run into every time I suggest we complicate our understanding of kindness is so consistent I think it’s worth interrogating. What does our attachment to this type of kindness give us? And why are we threatened by the proposition to loosen our grip on it? I have a guess based on my own firsthand experience of privilege.
When we’re granted access to the world in a way that others aren’t, we often feel guilty. Whether we recognize the source or not, there’s a discomfort in watching another person struggle to navigate spaces that we move through with ease. We can alleviate some of that discomfort when we reach out a hand and pull someone along. Phew! I’m not one of those regular privileged assholes. I care, dammit! But our own discomfort is the driving force of that interaction, and when we’re focused on alleviating our own uneasiness, we’re not really looking into the face of the person whose hand we’ve grabbed. That feeling of discomfort is worth reflection—it’s a red flag, signaling that something needs attention—but a gut reaction to discomfort can do more harm than good. Thoughtful reactions take time and reflection. What does the person in front of you actually need? Do you even know? Is this really an individual problem to solve in the moment? Or does this individual encounter reveal a structural change that needs to be made?
* * *
I’m in the middle of running errands one afternoon, wearing my favorite steel-toe logging boots with red laces. I found them at a vintage warehouse shop. They’re heavy and big and make me feel rugged and powerful. I pull up to the car repair shop and see a man watching me pull my chair out of my car and put it together on the pavement. This setup ends with my feeling small so regularly, my prickles spike before I even process the emotions. I feel the sweat pop out on my upper lip as I will myself to throw my chair together at turbo speed before he can read me as desperate and flailing. I’m fine—I promise! Can you see how fast I’m moving? Can you tell how many times I’ve done this? Can you see how capable I am?
And then I hear him. Such a simple, casual sentence. “Looks like you’ve got this,” he says.
I look up. “Yes!” I say. “I really do.”
* * *
When I finally found an affordable house to move into that was “accessible enough” after months and months of looking, I signed a lease as quickly as I could. The house had a couple of steps leading up to the front door, but this felt like a solvable problem. Surely someone out there could build a ramp for me. But I quickly realized this task was much more difficult to accomplish than I had imagined. I didn’t really know where to start, so I called the Kansas City Housing Authority. After all, its expressed mission is to “develop, rehabilitate and manage decent, safe and sanitary quality affordable housing in a manner that promotes equal opportunity.” I called and asked whether any programs were in place that could help me build a ramp for my house. They acted like I was a bit ridiculous for asking. I emailed a few individual builders, and they also acted like my request was rather absurd. Then, my brother found an organization called Hope Builders. Like good wizards with magic powers, this group of lovely humans came to my house, bought and brought all the supplies, and constructed an actual path of freedom into my house, all in one morning. Unlike putting my chair together, I needed their help with this. They’d identified a real and powerful need in our community and set to work addressing that need, practically and systematically.
* * *
I’m not here to tell anyone they shouldn’t ever help a stranger in a parking lot or that a person has to start a nonprofit in order to be truly kind. But I do want to prompt a reexamination of when acts are, in fact, kind and helpful. In the ableist script that drives so many of our interactions, disabled people are either cast as helpless victims who need a hero’s help to survive or the inspirational figures who inspire nondisabled characters to be grateful for their beautiful able-bodied lives. The reality is, of course, so much more complicated. Like anyone else, disabled people are both capable and in need of some help. Just like every other human, their competence and needs are unique. You have to pay attention to understand them. And it very well may be that the “kindest” thing you can do with that uncomfortable privilege you possess is to support an organization like Hope Builders.
So when I think about a kindness that does good to those on the receiving end, I’m not thinking about the person who hands me a napkin when they see me trying to reach the pile located on a high restaurant counter; instead, I’m thinking of the person who notices the napkins are out of reach for anyone who is shorter, uses a wheelchair, or can’t stretch their arms and changes the location of the napkins. A kindness that brings about meaningful ease and access will lead to sustainable, systematic, empowering changes that make the world more accessible for more people. It sounds simple enough, doesn’t it? Historically, though, the application of this form of kindness still gets easily tangled.
* * *
My best girl Bertie invites me to a fancy-pants fundraising gala for a charity organization that supports disabled kids. I pull a black dress from the back of my closet, straighten my hair, and put on a pair of pantyhose with one giant run down the back that I hide by remaining inconspicuously in my chair like a classy-ass lady. Turns out I haven’t spent a lot of time circulating the fancy-pants gala scene, but I do my best to tidy up.
I’m nervous about attending this event, and not just because my usual wardrobe is mostly leggings and sweatshirts. With all of its dazzle and generosity, the premise of this organization—this event—rests squarely atop a fraught history. Disability and charity have long held hands in a confusing, often dysfunctional relationship that showcases how easily good intentions can slip into exploitation. Charles Dickens captured an early version of this dynamic with his pitiably frail and tirelessly chipper character Tiny Tim. Published in 1843, A Christmas Carol was written and read during a period when more and more people were being injured and impoverished by factory work, and Christian pastors were fervently preaching that their congregants should care for “the least of these.” Enter Tiny Tim, the sweetest, sickest child you’ve ever met, complete with a little crutch and a heartbreaking cough. (Is his cough actually described in the book? I don’t even remember! I just know I can’t imagine Tiny Tim without a weak smile and an even weaker attempt to clear his lungs.) This little fellow serves as the ethical push Ebenezer Scrooge needs to complete his moral transformation. The only thing that can move Scrooge’s cold, cold heart is the sight of Tiny Tim’s tombstone, a death that could have been prevented by his very own bounty.
There is no doubt: this story is Scrooge’s. Tiny Tim is here to inspire Scrooge’s generosity, to transform him from a crusty miser to a joyful philanthropist. Yay! Our unlikely hero has discovered the secret to life! This story was written almost two hundred years ago, but it remains the default script we follow, and it hovers in the back of my mind as I get ready for the event, feeling cautious but hopeful. It’s the twenty-first century, after all.
As soon as we move through the gold front doors to the bustle of the gala, I’m blown away by the glam and glitz. The opulent venue with shimmering, ornate ceilings and a red velvet–covered staircase, the twinkling chandeliers and staff circulating with delicate trays of bubbly beverages, the swishy dresses and dazzling smiles transport me. And it isn’t just the lavish decor and costume. I’m quickly struck by the warmth, care, and passion I feel from the people behind the organization. We wander through a maze of round tables and make our way to our assigned seats where we find handwritten cards individually penned by the organizer of the event. She must’ve written hundreds of these cards! She visits our table radiating warmth and earnest goodness. Honestly, I think I can see sparkles in the air a
round her. She’s the same onstage in front of swarms of people in their styled hair, suits, and pristine pantyhose. She describes the main goal of this organization, to raise funds to make Kansas City more accessible. This particular project aims to design an accessible park, because all of our kids deserve access to the outdoors. The vision she describes resonates to my core—let’s make the world a more inclusive space for all of us. Yes! Let’s! Please!
As I applaud wildly at my table, I feel at ease. I sip my fizzy gin and tonic, take bites out of every little treat on my plate (and Bertie’s plate), and chat with the other poised and polished people at my table. While this organization still brands itself as a “charity,” it seems to be setting its gaze at change that would actually empower the disabled community. Instead of simply setting us up to be dependent on a drip of gifts from our nondisabled benefactors, it seeks to reshape the landscape and pave the way for us to join the group through access. This feels good.
In the midst of my good vibes, Bertie and I decide we need more pasta. What’s the point of dressing up fancy if it doesn’t come with all the pasta you can eat? I push myself up the ramp along the edge of the room but start to lose steam about two-thirds of the way to the top. (It’s steep. Also, I never work out. Also, gin and tonics.) Bertie gives me a boost, and we wander around the tables of food, eyeing each steaming tray of treats. As I roll along, winding through clusters of elegant socialites, a familiar feeling creeps over me. Moving through a crowded room of chatting people standing upright has never been my favorite. My body carries countless memories of similar scenes reaching way back to seventh grade when all the sweaty preteen bodies would pack tightly together before we were released for our first classes. It’s a familiar feeling—being stuck, trapped, invisible, stared at, tripped over, talked over. But now I’m an adult wearing a black dress and pantyhose that appear to be fully intact. I can do this. I find the table with trays full of steamy noodles slathered in marinara sauce and hold out my plate for more, but still, there’s an eerie feeling I can’t shake. What is this? As I try to roll slowly down the ramp without the pasta plate sliding right off the incline on my lap, it dawns on me. I don’t see any other visibly disabled adults here. Suddenly, I feel like I’m at a charity for zebras, and I’m the one who’s escaped her cage and is roaming recklessly through the crowds of pretty party people.
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