LIFEWORKS

I’m a woman, first generation American-born Asian, and have had cerebral palsy, which impairs my mobility, since birth.

Since I graduated from Bryn Mawr, my professional identity has evolved in two directions—as a disability advocate and as an English instructor at a small, liberal arts college much like Bryn Mawr. Growing up, I didn’t think much about the implications of my minority status. Despite being one of few students of color in my schools and the only one with a disability, I believed in the Confucian ethic of meritocracy and the popular culture fondness for neat and happy endings. Awareness of a more complex reality came slowly.

In high school, building a statewide youth empowerment group, I made friends with an astonishing diversity of people and learned to collaborate toward common goals. Because of this experience, I was drawn to Bryn Mawr’s Quaker-influenced values of tolerance, honor and social activism. There, for the first time, I had Asian peers with whom to commiserate about “model minority” pressures, watch Asian films, celebrate Chinese New Year and study Chinese philosophy and history. Ethnicity now had significance to me beyond the chance occurrence of family, yet my new sense of pride also meant greater awareness of the inherent political baggage, from campus debates on diversity requirements to irksome inquiries about when I, a citizen by birth and an English major, had come to the United States. I was a proverbial Mawrtyr who attended in spite of its being a women’s college and only appreciated the fact later. I welcomed strong role models, but when conversations turned to sexism and women’s history, I couldn’t help thinking that gender was the least of it.

While those were enjoyable years, they were also extraordinarily difficult. There were unsuccessful attempts to drive, and butchered dissections as a result of my erratic hand-eye coordination, and four long winters of feet perpetually sliding out from under me in snowdrifts on the green or on slick dining hall floors. Most of my friends, though well-meaning, couldn’t understand my intense pessimism about my future ability to be independent and to attain typical life milestones once in the “real world.” Without fully realizing it, I explored questions of identity and power while studying Shakespeare and Aristotle. In the course, “Women of Talents,” we discussed how dominant societies often silence voices they perceive as “other.” Privately, I confided to my professor, Katrin Burlin, that an eminent neurologist, assuming profound mental retardation because my typically Chinese head was “too small,” had advised my parents not to have a bilingual household lest I have to be institutionalized and be incomprehensible to others. Years later, I’d win awards for English and French but my Chinese remains far weaker as a result. With her native Estonia then still under Soviet rule, Katrin understood instinctively the indignity of being summarily discounted and cut off from one’s culture. She said simply, “Write about it,” but back then I couldn’t. These things cut too close to the bone.

After graduate school, I assumed that my elite, mainstream credentials would speak for themselves with potential employers, but job offers didn’t materialize. Impelled by the need for a job, a means to figure out my life, a desire to get away from the ivory tower and idealism, I gravitated to disability advocacy. This work has involved everything from assisting individuals toward goals such as obtaining jobs or homes to encouraging broader changes that increase equal opportunities and respect for the those with disabilities, from accessible public transit to accurate historical depiction of FDR’s disability from polio.

Much in the way that Bryn Mawr justifies its continued existence as a place of women’s own, many in the disability community believe that concrete tools for living are best learned from peers. Even as I began to guide others, I met accomplished people with all types of disabilities and discovered laws, technology and programs I’d never known. I heard stories of what we’d been told we’d “never be able to do,” of parents who, like mine, fought to put their children in public schools before it was law, of years of medical intervention and numerous other laughable, infuriating and sad encounters. These are shared experiences that shape a history, values and culture. I realized it’s no accident that the Independent Living movement, one of the major influences on disability rights, began in Berkeley, California in the early 1970s on the heels of civil rights and feminism.¹ The parallel was sobering yet it forged my identity and confidence.

When I’m in the disability community, my own identity blends in, but I’m eventually reminded of being “other.” Visitors to the office frequently walk past those of us with visible impairments even as we inquire, “Can I help you?” and head for the first person who doesn’t look disabled, who’s usually facing the other way. A reporter for a respected major newspaper couldn’t understand why my colleague wouldn’t allow a photographer into his home to take pictures of him getting dressed for work—as if his disability made this private and ordinary event worthy of public consumption.

On the street, curious looks from children bother me far less than their parents’ silence and sharp yanks in the other direction. Often, to diffuse their tension, I’ve smiled and said hello, but not anymore. Last year, a friend and colleague of many years did just that, asking a neighbor’s child an innocuous question about a toy as he dropped me off. Two hours later, a police officer was at my door investigating a “death threat.” My friend and I are certainly concerned for children’s safety, but the magnitude of the adults’ reaction was profoundly disturbing. In my small, usually tranquil community a simple, “What’s going on? Do you know about this?” should have sufficed. As we struggled to understand, we kept returning to the reluctant conclusion that the incident occurred because he’s African-American, I’m Asian and we’re both visibly disabled. Logic of experience told us so, lessons journalist John Hockenberry says most people who aren’t minorities come to understand only indirectly.² It wasn’t the first time we’d been judged on physical traits nor will it be the last. Conscious malice is rarely intended, but it’s these preconceptions that as compassionate, thoughtful human beings, we’d worked for years to eradicate. My friend offered to meet with the family involved but was declined, so both parties are left to wonder and cringe again at the “other.” It shouldn’t have to be this way.

I’ll never forget the words of a leader in the disability community whose intelligence, commitment and skill at building bridges I greatly respect: “Fifteen years ago, I was the jerk in your parking space.” He was referring to life before his wheelchair when he never considered the rationale behind reserved parking. To me, his statement was emblematic of two things: that disability is the one minority group that one can join at any time and though the experience is often traumatic, it offers an opportunity for learning and change. If as individuals we’re seen as representing an entire segment of society, that perception can be used to turn negative images into positive ones. The responsibility makes even advocates wary. Being an “inspiration” is a stereotype too. Still, every day we teach and learn from each other. Ironically, one of my finest teachers of “cussed individualism” was 35 years my senior and never made it past the 10th grade but had an unerring sense of what mattered and never failed to say so.

Disability touches nearly everyone, transcending race, gender, age, sexual orientation and class—54 million in the United States alone.³ I’ve lost count of the times that even longtime friends suddenly have mentioned some connection to disability. When I’m in my English instructor mode, though my impairment is obvious, I rarely acknowledge it. My job in that realm is grammar, rhetoric and literary analysis, not politics. Yet, a student once wrote about being the hearing child of deaf parents. Others have told me of hidden disabilities they won’t disclose to others. Many students have worked in or will soon enter careers where they’ll see people with disabilities in traditional, dependent roles, but I suspect that my knowing for the moment more than they do makes an impression, however subtle.

With such universality, disability should be a difference like any other. A friend who directs an elementary school awareness program regularly asks me to speak to her classes not only about disability but also about movies, favorite foods and treks into the wilderness to camp, canoe and hike. She’s careful to introduce me by name to everyone in the halls so they see a person, not a body. The goal is to educate the kids without disabilities, but we’ve also called on each other to help people with disabilities and families in need. One year, the first question posed to me was not about disability at all: “Are you Chinese or Japanese?” Urged to “say something,” I replied that my Chinese was poor, but that the teacher’s son—who’s Caucasian and Jewish—is fluent. Another stereotype fell by the wayside.

Life with a disability is neither perfect nor predictable, but whose life is? I’m not “damaged” but different, just as gender, race or class make me so in other contexts. Some people with disabilities may never think as I do and will always long not to be “other.” At times, I also feel losses, but as the ending of a story often told in the disability community reads, “...if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy... Holland.”⁴ Our lives are all works in progress.

(Dedicated to the fond memory of Katrin Ristkok Burlin and to the many other teachers, academic and otherwise, who encouraged my voice.)

When I resigned in 1985 as Director of Admissions at The Spence School in Manhattan, I planned to keep busy teaching and tutoring, and also enjoying the magical view of meadows and woodlands that surrounded the small house I bought in Connecticut.

Things did not turn out quite as I expected. Soon after I settled in, friends began to notice that my voice was becoming faint. When I was alone, I tried to practice speaking louder. A subsequent doctor’s appointment and CAT scan brought the explanation: cancer of the vocal cords.

A collection of doctors—my internist, an oncologist, a specialist in head and neck cancer, a surgeon—convened to determine what the next steps might be. To avoid stripping me of speech, radiation was suggested. The radiation was painless and presumed to be effective.

Six months later a test determined that the cancer had returned. This time there were no options—only surgery, a laryngectomy.

After the laryngectomy, by using a battery-driven machine held just under my jaw, I was able to speak in a jarring, guttural, metallic “voice.” Even though my friends and family (and I, myself) became used to the odd sound, I wanted a more natural tone.

Help came from a speech therapist. I learned to speak, after a fashion, by saying words as I exhaled air. Technically, it’s esophageal speech. To my children, it’s “burp talk.” My speech could be understood, but it had no power. The machine was helpful in crowds and across any sizeable dinner table. As I continued to take lessons, my embarrassment gave way to confidence. I liked learning to talk.

Quite suddenly, the lessons came to a halt. Just six months after the laryngectomy, I was rushed to a nearby hospital with a life-threatening intestinal blockage. Most of my body’s systems were suddenly failing, and I was slipping in and out of consciousness. The surgeon performed complicated emergency surgery, followed by more than two months of in-and-out tubes, infections and abscesses, high fevers, additional surgery, and an array of medications. Finally, my system started to function again.

Recovery was slow. It was two years before I was ready to live alone. I needed a companion to run my small home and drive my car. During those years also I needed psychiatric support to get through an onslaught of clinical depression. This help restored my will to live, my wish to see friends again, and my eagerness to communicate.

I made a conscious decision. The first thing was to get rid of the companion tactfully. I was terrified of being on my own, but longed to become mistress of myself and my life again, and focus on learning to speak.

The long recuperation has spurred me to do things I have always wanted to do, such as write, travel, and polish my Swedish so as to communicate better with family members in Sweden, Norway, and Finland. (When I was at Bryn Mawr, I was still a Swedish subject.)

Before the emergency surgery, the prospect of dealing with my disability was terrifying. But the months in the hospitals, and the periods of depression and recuperation, were far more devastating. My disability is by now an occasional annoyance. I no longer sing and shout! But I have learned to use esophageal speech fairly well.

The inability to speak forced me to develop an alternative voice, which is writing, and I cherish opportunities to use it.

It wasn’t until my third year at Bryn Mawr that I found out I was the first student to attend the College using a wheelchair, and probably the first with rheumatoid arthritis. At that moment it truly hit me that I was a pioneer for future students, and that although the work that I had done to adjust Bryn Mawr was personally inspired, it would aid in facilitating women with disabilities at Bryn Mawr and in the world beyond.

Much of my college experience has been about managing my life and setting priorities. I have honed my ability to request accommodations from others, but in addition it has been a question of taking care of myself. One of the life skills I’ve developed at Bryn Mawr is that of conserving my energy or trying to use it productively. This is something that every student needs to learn, but because of my disability I know that my energy is limited and tested by even the most common of activities. The usual student ritual of staying up all night is pretty much out of the question because my body revolts against me with pain, stiffness, and a complete lack of energy. Time management has become key so that my academics, extracurricular activities, and personal life all have a place in the day. I need to take into account the many activities, ranging from dressing to writing, that just take me longer.

Being aware of my limitations is difficult because I am a capable person and do not usually think of myself as a mere mortal, but rather as a super-Mawrtyr like everyone else I know. But, I have realized that life is much more manageable when I cope as opposed to when I ignore a problem and struggle. At Bryn Mawr I have begun to find a way to operate more interactively with my body and listen to it more when it needs help. When I have an exam, I usually request that I take it on a computer to save my hands the strain of writing. In the library I get help carrying heavy books and reaching for things. And in the dining hall I ask workers to help me carry my dinner tray. From the daily necessities to the academic challenges, it is about working with my abilities and letting people know how they can best accommodate me.

I believe that the world presents unique challenges to people with disabilities and, because the world is only slowly becoming accessible to people with different abilities, that I am an important force in mobilizing this change. I have taken on the challenge of voicing my feelings about equality for people with disabilities, and I continue to attempt to pave the way for future generations. One thing that very much saddens me is the lack of opportunity for people with disabilities to get an education, work, travel and have other life enriching experiences because of world’s inaccessibility and unawareness. And I am disappointed that more people with disabilities cannot find a home at Bryn Mawr and other excellent academic institutions. Clearly, one of the stepping stones to making this world a more inclusive and accepting place is to continue shaping our colleges into environments which welcome and nurture all differences.

I appreciate the support that I have felt from Bryn Mawr and the understanding and openness of people in this community. Despite this flexibility and all the excellent physical improvements made on campus, there is still much more that can be done to build a general awareness about people with disabilities, to encourage open minded interactions with all people in the world. This is one of the challenges that I see in Bryn Mawr’s future, and it is one that we are definitely equipped to tackle.

Kelly Mack ’99 is majoring in psychology with a concentration in the neural and behavioral sciences. She has been a co-editor of The College News, a hall adviser, a mentor to a local teenage girl with a disability, and the coordinator for Disability Awareness Week on campus.