Invisible: Disability at Yale1 Comment
When Christina Kim ’16 arrived for her freshman year at Yale, construction workers were still hammering an automatic door into the frame of her accessible single. Her family lingered in the courtyard, waiting to carry luggage into her new room. It was the first of many signs that reality on campus would deviate from her expectations.
She did know coming into college that she would need a living space large enough to accommodate the wheelchair she used — so a freshman-sized double was out of the question. But the only accessible room offered that year in Timothy Dwight, her residential college, was a stand-alone single, separate from all the other freshman quarters. While her peers clustered into suites of four in freshman-only entryways, Christina lived alone, closer in proximity to her dean than to any of her friends.
In some ways, Christina found her freshman year liberating: the start of classes marked the first time she began using a motorized wheelchair, which provided her with unprecedented mobility and independence. She enjoyed getting to know other freshmen in her college — the ones she met in her FroCo group and over dinner in the dining hall.
But by the very nature of her disability — Christina has trouble balancing on her feet — she felt shut out of many freshman social circles. She couldn’t go visit her friends in their rooms in TD or on Old Campus because they all lived up flights of stairs. She couldn’t attend many of the events at the Asian American Cultural Center because it had no ramp. And when friends didn’t come to visit her, she would once more find herself alone in her room, isolated. Feeling invisible.
“College is about living with other people — living with friends,” she said. “And I really wanted the college experience.”
Two-and-a-half years later, Christina, now a junior living in Jonathan Edwards College, recounted these details to me in a soft, even voice, suggesting that her disappointment with freshman year has since dissipated. She lives with four other girls, one of whom invited her to transfer to JE during her freshman year. She has found friends who have learned to make social plans in accessible spaces, such as restaurants with no steps out front. And the Asian American Cultural Center, once a bastion of inaccessibility, has since installed a ramp rendering the first floor accessible, and has adopted a protocol to clear furniture whenever Christina plans to attend an event.
Now, Christina’s preoccupations revolve mainly around her extracurriculars, problem sets and treks up Science Hill, concerns that hardly set her apart from her peers. (Or, at least, the scientifically minded ones.) Still, every so often, she is reminded of her disability: when an automatic door doesn’t open; when it snows and paths become obstructed; when an event or party she’d like to attend is only reachable via a flight of stairs. These are the moments when, whatever her desires, Christina’s story diverges from that of the college students around her.
Christina is not alone in this regard. At Yale, 326 undergraduate students are registered with the Resource Office on Disabilities, according to Judy York, the office’s director.
But beyond that, it’s hard to glean much else about the range of needs York’s office witnesses. We cannot know, for example, how many students struggle, at least partially because of their disability, to adjust to life at Yale freshman year. We cannot know how many feel ostracized or stereotyped because of an outward difference in appearance. And we cannot know how many have suffered from the acute social pain of isolation.
These questions haunt me because they are the ones that have so profoundly colored my four years at Yale. I am completely blind — the only such undergraduate at Yale, York tells me — and throughout my time here, I’ve wondered, with varying degrees of urgency, how my peers perceive me fitting in.
Now, as a senior, I thought it high time to apply my reporter’s eye to the issue: How does a physical disability impact a student’s capacity to find contentment and respect, friendship and maybe even romance?
I decided to focus on students with physical disabilities, not because I believe their conditions to be any more debilitating than psychiatric or intellectual ones, but because, for better or for worse, they are the experiences to which I relate best. But, for the record, Karen Nakamura, an anthropology professor at Yale focusing on disability studies, challenged my dichotomy.
“I would invite you to ask yourself why you are bracketing out visible physical disabilities and whether you might have some latent prejudices in this area yourself,” she said over email.
Nakamura might be on to something. I have always felt profoundly uncomfortable with overtly identifying myself as a person with a disability, no matter how visible it may be. I never dreamed, in all my time at Yale, that I would ever author the words you are now reading.
So why, then, did I change my mind? Perhaps it is because I am nearing graduation, and revealing awkward details about myself no longer perturbs me. Or perhaps it is because moving through a judgmental social environment such as Yale’s with a disability can sometimes feel incredibly frustrating. In the past, when I would come up against these points of frustration, sometimes I would think to myself, “One day I’ll write about this, and maybe then they’ll understand.”
* * *
I arrived at Yale in the fall of 2011 armed with little other than a relief map of the campus and hope that I would find more mature friends in my new home.
Just several months earlier, my closest high school friends set about making plans for the weekend after our prom. At my high school, seniors typically clustered into groups of 20 or 30 and rented houses with a pool in back. It was an opulent tradition, but one that I didn’t want to miss out on.
As the event drew closer, though, I started noticing that my friends were dodging the question of the house whenever I brought it up, their excuses growing thinner and thinner each time. Finally, a couple weeks shy of prom, I confronted my best friend, and she snapped. “No one wants you to come, Michelle,” she told me. “They’re worried that if everyone is drunk and you accidentally wander into the pool, no one will notice and you might drown.”
I now realize that my friend was trying to wave aside the inconvenience of being mindful of me on a night that was supposed to be about mindless fun. But at the time, it peeled away years of false confidences that my friends saw me as an equal. My only consolation rested in the fact that, in a few months’ time, I would be living among some of the world’s smartest people, who would know better than to expect me to drown.
That illusion, too, was quickly stripped away. As my classmates acclimated to campus, I seemed to be the only freshman who still didn’t know how to travel to buildings a mere block away from where I lived — no matter how diligently I studied my map. I sometimes skipped meals, for fear that a dining hall worker would place me at a random table of students, where I couldn’t look around and spot friendly faces for myself. And on Friday and Saturday nights, I didn’t know anyone well enough to tag along when they went out; the few times I accompanied acquaintances to frat parties, I would inevitably lose them and meander my way, quaking, back to my room.
On one such night, I shuttered myself in my tiny L-Dub single and cried into my pink velvet pillow. Here was where the concept of invisibility first occurred to me: sheltered by my four walls, as long as I sobbed quietly enough and wiped away the tears carefully enough, maybe no one would notice. I spent many nights of my freshman year huddled up with that pillow.
I remember once reading a study that found Americans fear losing their vision more than they fear being diagnosed with heart disease, HIV or cancer. That statistic may sound preposterous — blindness is not a life-threatening illness, after all. Yet sight is so essential to the concept of living that people feel an existential attachment to it, as if to lose their sight would be akin to losing life itself.
Or maybe they just can’t conceive of what it would be like. Plug your ears, and you hear nothing. But close your eyes and you see the insides of your eyelids, the light shining through your lashes, the wild Technicolor of your imagination flashing before you. Whenever I tell someone, “I really don’t see at all — just like you don’t hear anything at all when you cover your ears,” they always seem bamboozled because the sensation I am describing sounds physically impossible. The lack of understanding, in turn, all too easily breeds a lack of respect.
I asked Judy York whether she thinks anything can be done to ease disabled students’ social transition to Yale. When I was a freshman, she had told me that adults would be available to walk me to class, but during evenings and weekends, I was on my own. Now I asked her whether that line of demarcation was fair.
“This is a tough one, to be honest with you,” she said. “I think universities hope that the social network will take over a great deal, so that you can get to where you want to go in the evening.”
“But,” she added, “there’s not much a university can or frankly should do if it does not. I don’t think an institution can force friendships on anybody. And I’m not sure if offering a paid staff person is the right answer toward fulfilling an engaging social life.”
* * *
Josh Slocum ’18 and I spent the first ten minutes of our interview missing one another — I could not see him waiting for me, and he could not hear me circling the shop, calling his name. Even though Josh entered Yale three years after me, when I recounted my freshman year to him at a corner table in Blue State, he laughed with sympathy. Josh is close to totally deaf, and the device he uses, a cochlear implant, hooks around his right ear, and is supplemented by a hearing aid in his left.
“It’s always that initial meeting that’s nerve-wracking,” Josh said. Though he pledged to shed the shame surrounding his disability at the start of college — “It’s a fresh start!” — he also wanted to combat the sometimes inflated notion that his deafness is a primary character trait.
“Once I tell someone that I’m deaf, it’s like they don’t really know how to handle me,” he said. People tend to raise their voices to a near-shout when speaking to Josh, though he said that doesn’t actually help him hear them. Some people, he said, bring their faces extremely close to him or gesticulate wildly when they speak. If Josh asks someone to repeat himself, he fears the other person might subconsciously think he is not interested enough to listen. Others, upon learning about his hearing impairment, assume he is either helpless or dumb.
Even though the individuals I interviewed for this story run the gamut of physical disability, one shared experience stood out to them in particular: otherwise intelligent adults, such as Yale students, too easily tack on negative traits to physical differences — such as a lack of intelligence, of responsibility, of complex desire. “People often don’t know how to approach and interact with folks with disabilities,” Nakamura wrote me. “They make assumptions about what folks with disabilities can and can’t do. They are afraid of offending — saying something wrong or doing something wrong.”
This reality certainly rings true for me. Hardly a week passes that a passerby doesn’t try to divert me to an elevator from a set of stairs, despite my functioning legs. All too often, a cashier will turn to a friend standing next to me and tell her the price of my coffee, rather than speaking to me directly. Just the other day, while meeting with my editor about this story, I was eating bits off the top of a muffin when a stranger interrupted our conversation to call over, “Ma’am, just so you know, there’s paper on that muffin!”
Unlike Josh, people don’t always notice Julia Calagiovanni’s ‘15 disability. Julia has a mild form of cerebral palsy that has caused her left leg to grow slightly shorter than the right, which gives her a slight limp and requires her to bend her knees as she walks. But Julia’s condition isn’t always evident; most often, it is mistaken for a temporary injury. “Are you okay?” people routinely ask her. “You’re limping.”
One summer, Julia worked as a girl scout counselor, where her young students felt less abashed: “The kids would be like, ‘Miss C, why do you walk like a duck?’”
Julia wonders why acquaintances feel so comfortable prying into potentially sensitive topics. “It’s an example of people commenting on other people’s bodies in unwanted ways,” she said.
Like Julia, Ivy Wanta ’17 has endured plenty of unwanted comments. She told me her friends enjoy attributing aspects of her personality to her visual impairment. (Ivy is legally blind.) Sometimes, their points have merit: friends say Ivy is unusually organized and responsible, perhaps because her disability has forced her to plan ahead more than her peers. But others grate on her. “Some people say that my cynical sense of humor is because of my disability, and I just don’t think that’s true,” she said. “What I feel like they’re saying is, ‘Half of you is the real you, and half of you is because of this thing.’”
* * *
Had Jessie Benedict ’16 not told me before our interview that she had little to no functioning hearing, I would never have been able to guess. She bounded into Flavors, where we had agreed to meet because Jessie can’t hear over the whir of a coffee shop espresso machine. She promptly spotted me, greeting me with a jovial laugh and offering to steer me through the line of frozen yogurt toppings. “Who is the disabled one here?” I caught myself thinking.
So I was taken aback when, like Josh, Jessie confessed that meeting new people sometimes scares her. But unlike Josh, Jessie most often wears hearing aids inside her ears, invisible to the people around her. That fact lets her get away with more — she doesn’t have to “disclose” her deafness if she doesn’t want to — but it can also create awkward situations when someone says hi and she appears to ignore him. (This is a common difficulty across disabilities; Ivy tells me that people routinely wave in her direction, and she can never see well enough to be sure that they mean to say hello or whether they’re “just, you know, hailing a taxi.”)
Jessie said she typically feels most at ease meeting new people when they are somehow already privy to her hearing impairment or when it comes up naturally in conversation. “But if I say, ‘Oh I’m hearing-impaired,’ then people will get awkward,” she said. “It’s like, by the way, I’m going to tell you this burden.”
That’s not to say that Jessie — or any of the other students I interviewed, for that matter — have not found some devoted friends. But all of us have discovered those friends on different timelines, each employing a different strategy. Jessie hardly had any trouble at all after jumping the “disclosure” hurdle. Ivy and Josh have had to discern between those acquaintances who seemed hung up on their disabilities and others who were more willing to look past them.
For me, the process of finding friends was perhaps more studied. No matter how terrible I felt, I always forced myself to wander into new club meetings, college events and neighboring suites. I used a charm offensive, chatting with each individual I encountered so aggressively that, if I was successful, which I often was, their attention would quickly be drawn away from the cane in my hand. Come October or November of my freshman year, I had found a place on my hallmates’ futon, laughing about Internet memes and watching reality TV shows I didn’t quite care about — all to give me an excuse to stick around. Soon, we had begun coordinating nightly dinners.
Just this week, I sat down with two of my best friends, Andres Bustamante ’15 and Carla Vasquez-Noriega ’15, the latter of whom had been the friend to offer me her couch freshman year. How weird had it been, really, to become my friend? “It’s not something you’re not aware of,” Andres started. “But you meet so many people in the first couple of weeks, that it’s like, ‘Yeah, she’s just another person I met.’”
Carla agreed. She’d seen me rushing up and down the entryway stairs or splashing water on my face in the bathroom so often, she said, that she soon became desensitized to any outward difference. “I was like, oh, that’s Michelle! That’s Michelle bumping into my door trying to get in.”
Still, they have had to learn strategies. Both know, when we are taking a group photo, to ask the photographer to snap his fingers so I can look in the right direction. Both know never to leave me in a large group setting — especially a party — because they know how much the temporary isolation triggers my anxiety.
I heard similarly heartwarming tales of friendship from everyone I interviewed. Ivy’s friends know to keep an eye on her in crowded spaces, since she won’t be able to see them. Josh’s friends know he likes to stay away from the dance floor at a party, in a part of the room where the music isn’t quite so loud. And Nick Cugini ’14, another wheelchair user I briefly interviewed, told me his friends would offer to carry him up flights of stairs, unprompted, whenever friends were getting together in an inaccessible suite.
I think my friends needed some time to see past the blindness, to realize that, with a little adaptation, I could give and receive as much from a friendship as anyone. As Jessie put it, we knew we’d succeeded when friends felt comfortable enough to crack jokes in front of us. “I probably don’t hear most of the deaf jokes you make anyway,” she said.
* * *
One of the toughest things to balance with friends — or with anyone, really — is to learn when to ask for help and when it may be appropriate to reject it. Some disabilities rights activists, like Nakamura, reject the notion that individuals with physical impairments need more help than anyone else. When I told Nakamura that, at least a few times per week, I lose one of my shoes under the dusty depths of my bed and need sighted help finding it, she countered: “Someone who is sighted might still need their roommate to help with other difficult situations.”
That sounded a little rosy to me. To confirm, I asked Carla and Andres whether, over the years, they’d had to provide me with any help outside the bounds of an otherwise normal friendship. They loved this question.
“There are so many things!” Andres said.
“I mean,” Carla answered matter-of-factly, “you bump into shit all the time.”
“The fact that you constantly have crumbs on your clothing,” Andres said.
“Or when we have to point out when your cleavage is hanging out,” Carla added.
Every student with a disability I interviewed agreed: there are situations where we undeniably need our friends’ assistance. But asking for and accepting help can be a difficult balance to negotiate. Sometimes, we need assistance with small tasks — matching a scarf with a shirt, for example, or serving ourselves food in the dining hall — but asking for too much can feel demeaning. Nick, for example, may need a friend to help open a door or lift a book off the shelf. Ivy may need help copying down the numbers her professor is scrawling on the chalkboard. And Josh might need to ask his friends to repeat themselves over and over.
There are times when, despite their best efforts, friends do get annoyed. Ivy recently went to Claire’s and when she asked a friend to read her the menu, the friend responded, “No, I’ll just read you the highlights.”
“I try to really restrain myself unless I know it’s something I can ask really quickly,” Jessie told me. “I make conscious choices to miss out on something instead of pestering people.”
There are still other times when help is unceremoniously foisted upon us, such as unsolicited advice on when to cross the street while we are walking our regular route home, which we must either reluctantly accept or reject at the risk of seeming rude. Whenever a stranger intervenes in my daily routine, I restrain the urge to react in frustration because I know the impulse to help is well-intentioned. But it’s hard not to find repeated offers of help irksome, especially as they build up throughout the day. When I can, I refuse strangers’ offers as politely as possible, with a thank-you and an assurance that I know what I am doing. For a time, I took to wearing a Yale sweatshirt when flying, because airport employees can be particularly patronizing. That worked for a while; but when one employee asked me if I was wearing the sweatshirt because I had a relative at Yale, I swore off the practice.
“It does wear you down over time,” Josh said. “You don’t want to feel helpless, but sometimes you are — and there’s nothing you can do about it.”
* * *
By the time I reached my senior year at Yale, it seemed like I’d accomplished most things I’d set out to do: I’d made a bunch of friends; I’d found intellectual satisfaction at the Yale Daily News; and I’d traveled places on my own, mainly for news stories, that I’d never before thought possible. But no matter how much I’d put my mind to it, I’d never found someone who wanted to date me.
The problem, as I viewed it, was one of perception. Sure, I’d found people who wanted to be my friend, but I feared their image of me ended there. If I was so often viewed as a creature to be helped, the chances were slim that I’d also be seen as a person capable of love. When I confided my theory to my friends, they wouldn’t challenge it, which only made me more despondent.
Of all the topics I broached during my interviews, none provoked so many emotions as did the topic of love and dating. Of course, our experiences differed vastly. For some, their disability amounted to a sometimes humorous inconvenience; for others, it felt more like an insurmountable barrier.
Jessie recounted a series of dates she’d recently gone on. Her first date, at the art gallery, passed without an occasion to mention her hearing impairment. On her second date at Barcelona, she felt too embarrassed to tell her date that the restaurant was too noisy, choosing instead to lip-read her way through the night. But for their third meeting, her date suggested a movie, and Jessie was forced to wear more powerful hearing aids — “big deaf girl hearing aids,” as she calls them. When she finally raised the topic of her impairment, “He was like, ‘What?!’ and picked up my hair to check.”
Ivy articulated a similar discomfort with allowing her disability to interfere with a budding romance. Recently, she was studying in a guy’s room, holding her textbook close to her face so she could make out the text. He teased her, and she said nothing. “With some people, it can definitely kill the vibe,” she said. “I don’t like that I think that, but I guess that it’s true.”
For others, a disability can curtail a person’s chances at finding dates altogether. Although my friend Katie Wang, a post-doctoral fellow at Yale, had tried OK Cupid, she said she’d never made it past making a match. “When you make contact with somebody online,” she said, “you probably want to tell them before you meet them in person that you’re blind. And then some people might decide not to meet with you for that reason. And you just sort of have to deal with the psychological consequences of that.”
Katie and I shared this mindset. While my friends met guys at parties or in class, I all but gave up on trying. I couldn’t catch a guy’s eye, and even if I could have, I doubted anyone would approach me if I looked so obviously disabled.
I was so attuned to the idea that I was undatable that, when an acquaintance started dropping not-so-subtle hints, I didn’t pick up on them. When he started calling me, asking for advice on classes, I thought it was strange but nothing more. He asked me out to coffee, and though I agreed, I sprained my ankle on the proposed day and never rescheduled. It ultimately took a mutual friend (and a fair amount of convincing) to set us up before we went on our first date.
Nearly two months later, he and I were walking hand in hand down Amsterdam Avenue on New York’s Upper West Side. We were chatting about nothing when, seemingly out of nowhere, he asked a question I’d been dreading since we’d started dating: “If you can’t see me,” he asked gingerly, “How did you know you were attracted to me?” I stumbled through an answer about nonvisual features — the way he held my hand, the way he told stories about his family.
After a pause, I changed course: “I guess it’s still a little hard for me to believe that — that, well, you’d want to date me even though I can’t see.” He laughed and held my hand tighter. “Honestly,” he said, “Most often, I don’t even remember.”