I’ve Been Paralyzed Since I Was 3. Here’s Why Kindness Toward Disabled People Is More Complicated Than You Think

I am a magnet for kindness. Like the center of a black hole, my body attracts every good deed from across the universe to the foot of my wheelchair. I move through parking lots and malls, farmers’ markets and airports, bookstores and buffets, and people scramble to my aid.

O.K., so there are plenty of people who don’t seem to notice me, and some people who are actually repelled. They look down, pull their bag or their child closer to them, draw their legs up to their chest as I roll by. (Yeah, it doesn’t feel great.) But it’s the abundance of kindness that gets me all tangled. It’s the fly that won’t stop buzzing, won’t hold still long enough for me to swat it, won’t die.

It’s harmless, really. What damage can a tiny fly do? But then why do I feel like tearing down the house every time I hear its familiar buzz?

I’ve been paralyzed since receiving cancer treatments as a toddler, and I started using a wheelchair in first grade, so I’ve had 30 years to learn just how capable I am and just how often people assume I’m helpless.

As a culture, Americans are convinced that disability is something they’ve figured out. How could ableism exist when we’ve memorized the rules? Don’t say the R word; don’t make fun; disability doesn’t define anyone; try to be helpful; and the rule that guides them all: be kind. I’ve seen so many people perform these creeds in one form or another.

Like the folks who try to do me a favor by keeping me separate from this disabled body of mine: All I see when I look at you is a beautiful woman. I don’t even notice your wheelchair! It’s meant as a kindness, but it feels like erasure.

I think I understand how it happens: if you live in a community where disability is framed as tragic and inferior, then claiming not to see that so-called defect feels like a favor. We try to extract the disability from the person, because we think disability is ugly, and the rules tell us this separation is nice. But do we attempt to extract thinness, Ivy League education or wealth from a person? Of course not. We see these characteristics as inherently positive. Maybe individuals hold on to these features as part of their identity, maybe they don’t, but as a culture, we don’t take it upon ourselves to graciously inform people that we see past their fit bodies, fancy diplomas and piles of cash. There is no urgency to ignore thinness, no discomfort in recognizing education, no kneejerk desire to erase wealth. But deep within our cultural understanding of what it means to be a human with a body, we position disability below ability and at odds with health, beauty, wholeness, success and happiness.

Time and time again, people have become uncomfortable with or hostile to the stories I share about sitting on the receiving end of “kindness.” Maybe it’s because so many of us claim “kindness” as one of the most important qualities a human can possess. Disrupting our understanding of kindness is a direct threat to our sense of self and understanding of the world around us. But as a veteran Kindness Magnet, I’ve found people’s attempts to Be Kind can be anything from healing to humiliating, helpful to traumatic.

At least eight times a day, I yank and throw, pull and twist my wheelchair in and out of my beat-up 2007 Toyota Corolla, an ordeal that takes about 30 seconds. On this particular day, I’m assembling my chair when I hear a man yelling at me from across the parking lot. It’s safe to assume he wants to help me, and I have decades of data to attest that he will not be able to make this routine even the slightest bit easier for me.

I’ve got the body of the chair on the pavement by the driver’s seat, and I’m reaching into the back seat for the first wheel. I’m swift and strong. I’m sure it must look difficult for someone who’s never seen it, but I don’t falter. The wheel is firmly in my grip when I catch a glimpse of the man running toward me.

“Don’t fall, don’t fall!” he shouts.

“Oh, I’m fine!” I say. “See?” I begin to slip the first wheel into position.

The man sways on his feet, seemingly torn. I might look fine, but surely I’m not. I assemble the second wheel, flip the chair to face me and stand up to transfer. “Don’t fall!” he cries again. I hop into my seat and grab my bags.

I’m no longer trying to be pleasant. I’ve used my words and demonstrated through action: I’m fine. Why doesn’t he see that? He rushes to open the door for me. I roll my eyes.

The main messaging surrounding disabled people is that we’re supposed to Be Nice to them (or maybe its close cousin, Don’t Be Mean). Regardless of our age, socioeconomic background or education, we learn that disabled people need protection and assistance. If a disabled person is being made fun of, the Kind Person intervenes to say, “Stop that!” Or better yet, punches the Bully in the face and yells “Scram!” while the Bully scuttles away.

This is the power of the one-dimensional, deeply embedded ableist script in our culture. Some bodies are Victims, others are Heroes. Like royal weddings or animals of different species cuddling, we cannot get enough of stories that involve kindness and disability. There is even a whole genre of “news stories” on the Internet about cheerleaders and football stars asking disabled kids to the prom: “High School Football Star Becomes Internet Sensation After Taking His Disabled Best Friend to Prom and Leading Her in a Slow Dance” (Daily Mail), “This Student With a Disability Got Asked to the Prom in the Sweetest Way” (BuzzFeed) and “‘When Pigs Fly’: Girl Asks Boy With Special Needs to Prom” (NBC4 Columbus).

In 2018, 15-year-old Clara Daly was on a flight when she heard the call, “Does anyone know American Sign Language?” She learned that the flight included a deaf and blind passenger, Tim Cook, and the airline staff had no way to communicate with him. Daly had started learning sign language about a year before, and as she signed words into his palm, she became the conduit between Cook and the rest of his surroundings. There were at least four photos from their encounter posted on Facebook. In three of them, the camera focuses on Daly. Her blond hair and glowing cheeks look almost otherworldly under the light pouring in from the windows. Cook’s face is obscured. We see the back of his head, the side of his beard.

In an interview with his local news station, Cook said he was used to isolation and thanked Daly for reaching out to him. This detail added a sprinkling of heartbreak to the story and remained unexamined. The title of the article wasn’t “Deaf and Blind Man Sheds Light on Social Exclusion for Disabled Communities.” The article didn’t include a whiff of interest in solving the problem of disability stigma or social ostracism or even how to make airplanes more accessible for disabled folks. Instead, the events were transformed into a gooey celebration of the 45 minutes when one pretty girl talked with one disabled man so that its readers could get the feeling of being wrapped in a hug.

I get it. The world is dark and scary, and we need more feel-good stories. These articles didn’t try to fix the problem of ableism, but are they really so bad? Isn’t any form of being there for another person worth celebrating?

Well, here’s the problem: we have ignored the perspectives, stories and voices of disabled people for so long that their actual needs, feelings and experiences are hardly acknowledged. We look through the eyes of nondisabled people so regularly that we forget to ask even one of the many questions hovering around the disabled recipients of “help.” Did you want anyone’s help? Was it even helpful? What needs did you have that remained ignored or misunderstood? What could be put into place so that you aren’t forced to be dependent on the kindness of a stranger who may or may not be there next time? Did you know you were being photographed? Did you want those images shared? How did this experience feel to you? How many times have you been put in this position before?

I’m about 17, and my boyfriend Sam and I are “leaders” for a weekend youth-group trip. We’re scheduled to walk through some touristy caves that are clearly inaccessible, and as the group lines up, I mention that I’ll meet them by the exit.

“Bek! I’ll carry you!” Sam says. Sam carries me a lot, and usually it’s welcome and easy. But this time, I’m tired. Also, I don’t care about these caves.

“Sam, it’s like a mile long in there,” I say. “Don’t be ridiculous.”

“Aww, that’s nothing!” he says, flexing his biceps like a superhero.

“No, really. I’m tapping out of this one,” I say.

“Would you please just let me carry you?” Sam asks loudly. Other people are listening now.

“I really don’t want to,” I mumble.

Sam kneels in front of me. “Please let me carry you,” he says, quietly now.

“Aww,” say a few girls close behind us.

Why do I say yes? Who am I trying to please? What good do I think this will do?

One hundred feet in, I know I’ve made a mistake. My chest and cheek rest against Sam’s dampening back, and my arms and neck start to ache. As we reach a tight corner, Sam bends down, and I see a flash behind us. I turn to see a girl winding her disposable camera. She continues to take pictures of Sam carrying me through the cave throughout the tour, more interested in the performance of hero and damsel than the caves themselves. If this had taken place today, would we have become another viral Internet story? I can see it now: “Brave Boy Carries Disabled Girl Through Cave: There’s Hope for Humankind After All!”

With each step, I wonder whether my shoulders will pop out of their sockets. I feel like a deformity growing off Sam’s back. When we finally make it to the other side of the cave, we have to wait for my chair to arrive. Sam helps me prop myself against a wall, as person after person congratulates him.

“Dude, that was incredible,” they say. “I can’t believe you carried her that whole way.”

Sam doesn’t make a big deal out of it. Even so, I don’t want him to touch me.

I’m 24, 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 grape-fruits, cartons of milk and yogurt, boxes of cereal and microwave popcorn. I’m aware that the teetering tower looks precarious, and part of this ritual includes a series of breezy and bright no thank yous to the inevitable offers of help. Bringing someone else into this dance would actually be more difficult than completing the task myself; and I love the feeling I get when I fill my tote, transfer it to my car, lug it into my apartment and put each item into its designated spot. I know it looks like I don’t, but really, I’ve got this.

On this particular evening, I’m almost at my car when a man the age of my dad offers to help. “Oh, no thanks!” I say. “I’ve got a whole system.” 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. 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 tote of groceries over my body to nestle in the frame of my wheelchair. A little involved, yes, but once you’ve done it 20 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. 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 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 finally say. “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 15 ft. away. I start pulling out each item from my tote and tossing it toward the passenger seat. I have to get out of here. I yank the bag 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 27, sitting alone in a busy coffee shop grading freshman English papers. As a girl nears my table, I keep working, but I can see her standing within an arm’s length. 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 and I felt God put it on my heart to pray for you. Could I pray for your healing to be able to walk?”

My head explodes with the word No. No. No. No, no, no, I do not want you to pray for my healing.

“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.

“O.K.,” I say.

Lydia puts a hand on my shoulder; my stomach reaches for my throat. People are starting to look at us.

Lydia begins her prayer. “God, I want to pray a blessing over Rebekah this afternoon. You love her more than all the stars in the sky and more than all the sands on the beaches,” Lydia says, her hand still resting on my stiff shoulder. “God, I pray that you would bring healing to Rebekah …”

Wait, healing? As in the prayer I said no to?

“Bring healing to Rebekah in whatever form she needs to be healed.” Such clever maneuvering.

“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? 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.

“So how am I supposed to be helpful?” you might be asking. “Are you telling me I can’t open the door for a disabled person? How do I know when someone does or doesn’t want my help? What are the rules?” These inquiries remind me of the questions that come up when we 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 through language. You have 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 engage? If you really can’t tell, you can ask, but if someone says, “No thank you,” listen. 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.

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. Why exactly are we threatened by the proposition that we loosen our grip on this type of kindness? 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. 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 pull someone along. Phew! I’m not one of those regular privileged jerks. I care! But 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. What does the person actually need? Do you even know? Is this an individual problem to solve in the moment? Or does this individual encounter reveal a structural change that needs to be made?

Like anyone else, disabled people are both capable and in need of some help. Just as with every other human, their competence and needs are unique. You have to pay attention to understand them. If you want to be genuinely, actively “kind” to disabled people, invite them into your organizations, businesses and programs. Allow them to perform in more roles than the grateful recipient of generous philanthropists. Recruit disabled engineers and dancers and office administrators and comedians and lawyers and speakers and teachers to participate in your world, and do your best to make that world accessible to them. And if you insist on using “kindness” to describe this kind of inclusion, recognize that including disabled people is a kindness for all of us. Because listening to voices that are typically silenced brings to the table nuance, endurance, creativity, beauty, innovation and power.

I’m running errands one afternoon, wearing my favorite steeltoe logging boots with red laces. They’re heavy and big and make me feel rugged and powerful. I pull up to the carrepair 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 will myself to throw my chair together at turbo speed before he can read me as desperate and flailing.

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.”

This essay was adapted from Sitting Pretty: The View From My Ordinary Resilient Disabled Body