My right eye is blind. When I was a baby my retina almost fully detached from the back of my eye, but a few cells must have stayed connected. If my left eye is covered the right eye can see light and dark and a waving hand, but not the number of fingers someone is holding up. It’s difficult to describe how this looks, the presence where there is usually absence, the bare bones Morse code of movement.
My blind eye has always supported its own agenda. I don’t have full muscle control over its direction, so in pictures it seems to be looking at something different than everyone else. If I were more romantic I’d tell you that my blind eye had special powers, could see rainbow auras floating around other people and gaze two minutes into the future. Maybe this is true, and my blind eye hasn’t told the rest of me.
I don’t often consider how the eye looks to others, but when I was an undergraduate and wrote a weekly opinion column for the campus paper, I published an article about being blind in one eye. I was invited to lunch by an administrator who was also blind in one eye and wanted to chat. Like my blind eye, hers was prone to wandering. Maybe its visions were more interesting than mine, but I was reminded of how when someone is speaking to us, we expect the attention of both their eyes. We don’t know how to interpret the free spirit, or what to do with things that don’t match, other than to push and prod and mold them to our liking.
Science has deduced that the people we deem most attractive are the most symmetrical. This puts those of us with independent eyes at a disadvantage, but people with disabilities have often been singled out. Some cultures have proclaimed us divine, have decided that anomaly must be God-given and that we have supernatural powers to make up for whatever is lacking. Other cultures have left us in forests to be found by lumbering bears. Still more have subjected us to knives meant to reshape, reconstruct, and reconfigure the parts nature got “wrong.” Some shut us in small rooms thinking we are not fit to be seen.
* * *
Drewi has spina bifida and has used a wheelchair since he was a kid. When we’re walking somewhere together, he says, “Remind me which side I need to be on. I always forget.” Not many of my other friends ask this question, but some of them don’t know I’m blind in one eye. The first time we met, Drew explained that he liked rock climbing and mosh pits and wanted to be in a marathon. He said he probably worked his joints too hard, and he’d resigned himself to early arthritis. I gave him a general account of half-blindness and walking through crowded grocery stores while bumping into people lost in the empty space on my right. I didn’t tell him how I sometimes pick my way down stairs because of my lack of depth perception, how I won’t drive in large cities because I don’t know who I won’t see, and how many times I have almost been hit by a car because I didn’t see someone not seeing me.
“So you can’t do as much as people think you can,” he said, “and we [people who use wheelchairs] can do a lot more than people think we can.”
“Pretty much,” I said.
Drew is the kind of person who often damns himself for telling too many secrets, but he can never stop a story once he’s started. This is one: On Tinder he connected with a woman who was married and wanted to meet up for sex because her husband was disabled. Drew said he’d be up for that, but he was also disabled, though the important parts still worked. She didn’t respond.
He’s always looking for love. I’ve told him that love is about best friendship, which helps maintain the bond with your beloved even when you feel more pissed than loving. Romance never put up with much shit. Drew knows whomever he marries will have to put up with his shit, anticipating two and three and four decades down the road when he might not be able to do things for himself. It’s the kind of duty that happens in many romantic relationships, though for him it could come at fifty instead of seventy. That’s why Drew says he only dates feminists.
“I need a strong woman,” he says, “because she’s going to be my advocate.”
* * *
This is a date: When I was a junior in college, I met a guy through an online personal ad. We exchanged a couple of e-mails and arranged to meet for coffee. He had dark hair, was kind of stocky, no glasses. It must have been the weekend, because there weren’t many other people in the campus coffee shop. He was terse, cool, hard to talk with, like playing catch with someone who keeps his hands in his pockets and doesn’t go for the ball. I tried to make smiling conversation like you’re supposed to do when on a date with someone you’ve never met before. I wondered why I was doing all the work.
“You didn’t mention you had a lazy eye,” he said five minutes into the “chat.”
“Oh,” I said, “it’s not a lazy eye, it’s blind. It’s been that way since I was born. I don’t think about it much.”
“You should have said something before,” he said.
“I’m sorry,” I said. Did he think I was trying to pull something over on him? Was I supposed to explain every physical detail and potential flaw? Should I have chided him for not telling me he was fifteen pounds overweight?
I have retrospectively made a list of all the brilliant, cutting things I could have said/done in return, like telling him, “You didn’t say you were an asshole,” then leaving. But I had my cup of coffee and had walked fifteen minutes from my dorm room and hopeful objects at rest tend to stay at rest, talking to the asshole and thinking some pleasant spark of personality may yet emerge. We might have shaken hands at the end of the conversation, but I don’t think he ever smiled.
* * *
Around one-fifth of the US population has some kind of disability—physical, mental, invisible, or a combination of the three—only most people don’t realize this because many disabilities can’t be seen. Depression. Fibromyalgia. Diabetes. Crohn’s disease. Anxiety. My friends who use wheelchairs spend a lot of time trying to explain that they’re just fine and can open the (goddamned) door on their own. My friends with fibromyalgia spend a lot of time trying to explain that even if they look okay, they feel like shit.
* * *
Drew and his new girlfriend, Alexis, meet me in the coffee shop on a Sunday afternoon. They’ve been dating for a week after meeting online and are happy to tell me about their sex life. They’re in the honeymoon phase, adorable and anxious, and hold hands on top of the table. They thumb wrestle. His thumb is twice as long as hers.
When Alexis goes to the bathroom, Drew says it’s important to make sure she’s happy with their sex life. When Drew goes to the bathroom, Alexis says he’s overly concerned with their sex life. Drew and I have talked about his need to overcompensate for his disability through being sexually above average. He figures people assume he can’t have sex because he uses a wheelchair, so he has to prove them wrong. Did I mention he’s a shameless flirt?
Alexis doesn’t talk as much as Drew does, but she’s being introduced to her new boyfriend’s friend, which is a space of social calculation. What percentage of the conversation should be dedicated to school versus sex versus social issues versus the number of times Drew has to go pee because of his tiny bladder? Alexis is a goth girl, with the expected dark eye makeup and purple hair and nose ring. She is the sort of person I can imagine dating a guy who uses a wheelchair and likes mosh pits.
* * *
How do I overcompensate?
* * *
Nobody thinks of Helen Keller as sexy, or as a political activist. She was captured in history as a little blond-haired deaf-and-blind kid whom Anne Sullivan managed to teach through a magical moment with a water pump. Keller is frozen in that space, having the word “water” traced in her hand. We don’t consider that she grew up to become an adult, a writer, a peace advocate, much less a sexual being, though the people who worked closely and not-so-closely with her wondered whether she was bisexual or lesbian. There were rumors about her and Sullivan and other friends having intimate relationships, but who knows if those were true stories or merely titillating? The people in charge of booking her appearances were invested in maintaining Keller’s beautiful, virginal, yet desexualized imageii.
* * *
Q. Why does Helen Keller masturbate with one hand?
A: So she can moan with the other.iii
Q: What’s Helen Keller’s idea of oral sex?
A: A manicure.iv
* * *
Drew: I always tell people [about the wheelchair] before [we meet for a date], so it’s not a surprise. That can be a huge shock to people. Does it matter? To some people it does. It really shouldn’t matter . . . but I’ve told you stories where I was talking to girls on Tinder, and explained I can’t really feel my right leg, and I use a chair sometimes, and then next day you don’t hear anything from them, and then you realize they’re—
Alexis: —not worth it anyway.
* * *
I joke with Alexis about wanting to hand out informational cards with frequently asked questions to explain my disability: I apologize for running into you. I am not a bitch. You were just in the empty space on my blind side.
Alexis is already irritated by people who are patronizing toward Drew without realizing it, which happened when they entered the coffee shop.
Alexis: You walked inside here and those two women smiled like you were a child.
Drew: My second biggest fear is that the woman I care about will have to see that discrimination.
Alexis: They’re trying to get punched in the nose.
* * *
When we cross the street together, Drew always rolls ahead of me.
“They’re not going to hit the crippled kid in the wheelchair,” he says.
“They will hit the half-blind girl who they don’t realize is half-blind,” I say.
At the curb we grin at each other like we do when we joke about our frailties.
* * *
My friend’s daughter has been diagnosed with childhood fibromyalgia, a discovery that required too many doctors, and more doctors to consult about physical therapy, diet, and depression. What can any mother say to an eleven-year-old who just wants to be a kid and not worry about exercises, a ban on cheese, and mood swings that have made her scrawl suicide notes? Another friend of mine has Crohn’s disease, is on medication to help control her symptoms, and spends too much time convincing her parents that her stomach is upset and she’s exhausted. All she wants to do is own her right to feel tired, to miss classes when she can’t get out of bed.
Friends with chronic fatigue syndrome have explained their screening questions for prospective romantic partners: Will you listen when I say I don’t have the energy to stay up and watch a movie, to hang out with your friends, to go to that party? Will you take me at my word when I say I’m in pain, even if you can’t see the pins in my legs, even if my body seems animated but all I can manage is the last push toward the couch?
* * *
Drew has an ancient child kind of look, perhaps because of the lines around his mouth or the gaze that suggests he’s seen more than most twenty-somethings. He’s told me about being doped up for two months and in a full-body cast after back surgery, that it was better for those days to pass in a hazy blur than remember the pain. Drew won’t gush with sympathy when you have a headache, but he’ll give you an ibuprofen.
* * *
The problem when disabilities are invisible is that you pass as able-bodied whether you want to or not. This is helpful in social situations when you would rather people not know that your insides ache and you can barely move. Other times it would be helpful to reveal yourself, not necessarily for sympathy’s sake but to avoid a few dirty glances and the desire to hand out informational cards.
* * *
Drew: With meeting people online, I tried to post pictures that showed evidence of my disability.
Alexis: You fucking didn’t.
Drew: I have the picture with me and Kevin. That’s my wheel right there.
Alexis: In that lighting it looks like the arm of a chair. And you can’t tell in that picture. You also can’t tell in that picture.
Me: How did you choose the pictures?
Alexis: That’s one that I don’t look like I’m disabled.
Drew: You’ve got to ease people into that. Okay, fine, fuck it. I have friends that use pictures in their chairs and they have a lot of self-confidence with that, but I think things should be at a different angle when it’s online.
Alexis: I would have liked to know more than a couple of hours before we met up.
Drew: But you came anyway. I would have been stuck with all the pizza if you didn’t come, but I ordered the pizza that night. I would have watched Netflix anyway.
* * *
Alexis says when Drew wears baseball caps he looks too much like a dad. I can imagine him as a parent—squinting as he spoons baby food into a small, open mouth, wiping down high chairs, changing diapers. He’s had to deal with enough of his own shit since he has a bowel routine, has to give himself a daily enema and spend fifteen minutes to an hour on the toilet like any partially paralyzed person who isn’t always aware of the goings-on of his colon. But he was raised to be independent, to begin sentences with the phrase “when I have kids.” He told me that when he was in high school, his dad yelled at him to “get your crippled ass outside and shovel the driveway.” In the next breath he told me about the bowel obstruction that nearly killed him when he was twenty.
“That’s why it’s important to clean myself out,” he said.
* * *
I didn’t post a photo with my personal ad, and I wonder whether that would have made a difference. Would potential dates have noticed that my eyes weren’t looking in the same direction, and would they have cared? When I choose pictures to post online, I’ve noticed they are ones in which both my eyes seem to be looking in the same direction, the right eye agreeing to go along with the agenda. For once.
* * *
Drew: She says that if I meet her parents, the first time I have to stay in my wheelchair.
Alexis: So they don’t think that his dick works.
They grin at each other, and we hug good-bye. Drew texts me later that evening, still joyful and anxious in the honeymoon buzz.
Drew: I am so happy . . . I feel so alive. She gets me.
Me: You were both glowing like fireflies.
They are still falling, lost in that oxytocin buzz, but it’s what we all want, for someone to understand who we are, the blend of bravado and insecurity, compassion and contradiction, our three-dimensional coffee-guzzling finger-tapping grin-exchanging selves spun free of the promotions and preludes of an online dating profile, hoping we have found someone who will care about our sweet and eccentric and terribly human selves.
Alexis and Drew will stay together for nine glorious and gut-wrenching months before they break up. That will have everything to do with a clash of social habits and personalities, but it will come after many shared pizzas and beers and mornings lingering in bed. It will come after more occasions for us to have coffee and tell sex jokes as they continue thumb wrestling, giving each other sideways smiles, maintaining the firefly glow.
They will be in something that at least for a time I will see fit to call love.
And don’t we all envy that fall.
- Names have been changed to protect privacy.
- Nielsen, Kim. E. “One of the Least Free People on Earth.” The Radical Lives of Helen Keller. NYU Press, 2004.
- Nielsen 131.
- Rixon, John. “Tasteless Helen Keller Jokes.” alt.tasteless.jokes. Google Groups. 12 Aug 1998. Web. 5 May 2016. https://groups.google.com/forum/#!topic/alt.tasteless.jokes/tvIELEyo6NI