The train conductor had his face right up next to mine. I was sitting down, and he was leaning over, hands on his knees.
“Nothing,” I sniffled.
He pursed his lips. “Then why are you crying?”
In August 2014, Facebook sensation George Takei posted a meme of a thin woman, standing up from her wheelchair and reaching for a bottle on a high shelf. The caption read, “There Has Been a Miracle/In the Alcohol Aisle”.
I’m a huge George Takei fan, as is most of my family. He is a gay-rights activist and an Asian American activist — his Facebook posts are hugely popular. But every once in a while, he posts something, like this meme, that sparks negative remarks. Commenters were quick to note that some people use wheelchairs but can stand up and walk for short distances. The meme was intended as a joke, but anyone with experience in a wheelchair is familiar with the trope — a bystander is shocked, feeling somehow that they have caught you in the act. “Do you really need that?” they ask, surprised.
Takei later apologized, saying that he had never intended to imply that everyone who uses a wheelchair couldn’t walk or stand at all. But, in the intervening days, the blogosphere lit up with passionate writers from the disabled community. One Huffington Post correspondent wrote a piece titled “Bullying Disabled People Is Never Okay – But It’s Even Worse When You’ve Got 8.7 Million Fans Watching,” describing the harassment that people with limited walking abilities receive just for going about their daily lives.
It’s probable that Takei just didn’t know. Most people unknowingly equate wheelchair use with complete paralysis and don’t have any experience to tell them otherwise. Disturbing, however, is the fact that the photo was taken from behind — the young woman probably had no idea that she was being photographed until her meme was made viral and controversial by Takei’s post. I go shopping, sometimes in a wheelchair with my boyfriend pushing me. Sometimes I stand up. My image could just as easily been shared with almost 9 million people.
I developed a chronic pain condition in my senior year of high school. At some level, it happened slowly — rock-climbing injuries that never seemed to heal, chronic knee problems while hiking — but within a few short months, I went from climbing several times a week to struggling to walk up stairs.
Chronic pain is not an unusual medical problem. Experts estimate that 100 million Americans suffer from chronic pain, most of them elderly. In some cases, it is the result of a chronic medical condition like cancer or diabetes. In others, it is essentially a brain misfire. An initial acute event occurs and passes, but the pain continues, driven by the nervous system. There are risk factors like activity level, stress level, depression, eating disorders, age, and genetic predispositions like hypermobility. Some people experience chronic pain in a specific spot – for example, back pain or migraines, while others experience delocalized aches and pains from conditions like fibromyalgia.
Treatment options are varied, but grim. When, a year later, I found myself at the prestigious Stanford pain clinic, the psychologist instructor was very clear. “We cannot cure your pain,” he said. “Our goal is just to improve your level of function.” Medications, physical therapy, occupational therapy, meditation, mindfulness techniques, acupuncture: if time and finances allow (which, for many patients, they do not), it is best to try everything.
Chronic pain presents an interesting conundrum. When it comes about as a result of ongoing physical damage such as spinal problems, the underlying cause can be treated. When it doesn’t, a variety of physical and psychological therapies are recommended on a trial-and-error system. Unfortunately, chronic pain does not respond well to the “push through it” mentality. No obvious physical damage should equal no activity problems, right? But, in reality, most sufferers have to regulate activities extremely carefully to avoid flare-ups that perpetuate the neurological pain cycle.
My class at Stanford was designed to teach patients how to increase activity without increasing flare-ups. We classified daily activities into “high-impact” or “low-impact”. Washing the dishes might be high-impact, while reading a book would likely be low-impact. (Yes, unfortunately reading a book would have some impact for those with back or upper extremity pain). We were encouraged to do 2 to 5 minutes of a high-impact activity, 10 to 15 minutes of the low-impact activity, and then continually switch back and forth. All chronic medical conditions impinge on people’s lives in this way — activities that were once trivial become roadblocks. It becomes hard to work or to fully live.
This is where scooters and wheelchairs come in. Imagine a world in which walking is high-impact, limited to two minutes at a time and perhaps half a mile a day. Walking to class is impossible and grocery stores start to resemble marathons. Will there be a place, somewhere in the frozen food section, to sit down? The scooter is a tool that eliminates limitations. For me, it opened up the world of Princeton. It makes things possible.
Last fall break when I went to visit friends at Harvard and MIT, I brought my scooter on the trains. Amtrak and NJ Transit are both accessible. All I had to do was ride up a ramp to get in and down one to get off. On my way home in early November, with my feet on top of my duffel bag and a backpack on my shoulders, I felt a bit like Don Quixote — ridiculous, but capable of travel.
It happened to be the Sunday of the New York Marathon, so the NJ Transit train filled quickly. I stayed sitting in my scooter, so as not to take up extra space, and noted the people standing around me. A big guy with a backpack who leaned against the door to the bathroom, a college-aged girl resting on her boyfriend’s shoulder, and a tall woman with black, curly hair who was listening to her iPod. In between two stops, I got up to use the bathroom, catching myself on the armrest of my scooter as the train swayed. “Excuse me,” I said to the large man who was leaning against the handle.
When I stepped out a minute or so later, I was surprised to find a conversation going on between the college-aged girl and the guy.
“I don’t want to assume nothing,” he was saying. “It’s just that, growing up where I did — I can’t be sure that people aren’t playin’.” The girl was nodding, wide-eyed. “It makes you wonder,” she said.
I sat back down on my scooter, eavesdropping. The man said, “I don’t want to ask, but I’m just saying it makes you wonder. Like you said.”
The girl pulled on her ponytail. “Anyone would,” she reassured him.
I started to feel a little bit uneasy. For some reason I had a hunch that they were talking about me, but the idea seemed so self-centered as to be ridiculous. The tall woman was giving both of them a look that could only be described as the evil eye. “It’s none of your business,” she said in a warning tone.
The man turned to look at me. “I don’t mean anything,” he started, “but how often do you use that thing?” He pointed at the scooter.
Everything clicked. I had stood up and that had confused everybody. I looked around the car. Some people standing in the aisles were craning their necks to see what we were talking about. I felt somehow depleted. These were not my fellow travelers; they were an army of confused, staring faces.
“Excuse me?” I said, voice shrill. I gestured wildly at the girl and her boyfriend. “Is this what you all have been talking about behind my back?”
The man held up his hands. “I just want to make sure that you aren’t playin’,” he said. “I’m just wondering why you’re in that thing.” “It’s none of your business why I’m in this scooter,” I shot back. I was impressed by my own assertiveness. “Do you want my medical history too?”
The girl came to his defense. “It’s not just him,” she said. “I was wondering too, I mean, my dad uses a scooter, but people wonder why you use one when you can obviously walk!” Her boyfriend was watching, silently, like it was a tennis match.
“So I have to explain myself to everyone?” I blabbered. “You think I take this scooter on the train just for fun?” It was as though everything I had ever wanted to say came flooding out in one moment. Who were they to interrupt my train ride? Who were they to ask about my health?
If my goal had been to avoid attention, I was failing. Everyone in the train car was now looking at us. Never one to hold up in emotionally charged situations, I started to cry. The tall woman, spurred perhaps by my tears, broke in. “You should be ashamed of yourselves,” she shouted. “It’s none of your business “—she pointed at the man — “and you should know better!” She glared at the girl. “You are old enough to know that you do not ask people about things like this.”
The girl’s face had turned bright red. “I’m not saying she has to explain herself to everyone,” she tried. “I’m just saying that people would wonder!”
“So wonder!” the woman said. “Once you get off the train you can talk about it with your friends, you can talk about it with your boyfriend. But it’s not your place to ask.”
“I was just saying —“ the girl began.
“Look at her crying!” the woman shouted, pointing at my face.
I just sat there while they shouted at each other. Having started the fight, I no longer had the energy to continue with it. At the center of the argument, I was also somehow ignored. The girl started to cry very quietly. The man kept shaking his head and saying, “I didn’t mean it like that.” The woman was taking her role as protector to heart and yelling at them both. Everyone else in the car stared at us silently.
Finally, the conductor came over. We all tried to look like nothing had been going on, but of course I was still crying. “These people are asking whether I deserve to be in a scooter,” I blubbered when he asked me what was going on.
“I did not say that!” the man said. He put his palms over his eyes.
“If y’all can’t get along, please shut up,” the conductor said, then moved on. A moment later the woman tried to get one last remark in at the girl, and the conductor shouted from the car up ahead, “Be quiet!”
For several days afterwards, I couldn’t stop asking myself: Was I wrong? Should I have just answered his question? When George Takei posted his meme, he received a barrage of negative comments— some of them calling him “ableist” and “fag” in the same breath. I had always fancied myself the center of attention, had always wanted interesting strangers to find reasons to talk to me — What an interesting book you’re reading! Oh, you are a poet? Me too! —but not like this. The fact is that they didn’t know and had never encountered someone in such a situation. Without thinking, they had decided wheelchair or scooter could only be used by a paralyzed person, and thought that they had caught me in the act of deception. Gotcha! Faker. Or maybe nothing that malicious — when the girl got off the train, tremblingly, at New Brunswick, her eyes were red from crying and she said, “I’m so sorry.” Her boyfriend gave me a sad smile.
And perhaps I was wrong. After all, I am an imposter. I am aware of it every time I park in front of the dining hall, get up, and walk through the doors. It is confusing. It does make people wonder. I would never pretend to be completely unable to walk, but somehow my scooter pretends for me. So am I cheating a system that provides accommodations to the “disabled”? Have I received pity when I did not deserve it, assistance when I did not need it? I am lucky — I can walk into a professor’s office or go to a job interview and no one will ever be the wiser.
Curiosity is natural. Wouldn’t I rather people ask than make judgments? Several times, scootering across campus, I’ve been stopped by people who ask, So what’s the deal? Or, You are in a scooter but I’ve seen you walk. It’s inevitable and logical. The part of myself that I care about the least is both visible to everyone and confusing to everyone. They should feel free to ask! It is out there and public.
But if they ask, I am marked.I am separate. I had always imagined my scooter as a kind of trusty steed, an amazing tool that got me from point A to point B. The train reminded me that it was something else, something culturally constructed, something with a voice that was not my own.
So what do I owe the confused public? I want these questions to be answered, but I paradoxically don’t want to be the one to answer them. By writing this article, perhaps I’m trying to make some sort of public statement and regain my voice.