A friend recently emailed me a photo of my sisters and me at a birthday party in 1983. I recognized myself immediately in the photo—the chubby girl sitting in a chair wearing overalls sewn by her mom to accommodate her expanding girth. You can tell that girl enjoyed a good bowl of noodles. What struck me about the photo was the expression on my face, a look of quiet resignation with a touch of disgruntlement.
I can say I had a happy childhood with lots of friends and family support. However, when I look at old photos or reminisce with my sisters, I remember numerous moments of anger and frustration. In large part, having a disability from birth that progressively became more severe impacted my childhood experiences profoundly. Changes in my mobility radically affected my relationships with people and the built environment. At different stages those changes separated me from others. Looking back, I would never trade these experiences for an easier or barrier-free childhood. Sharing some of my memories in this essay is a way for me to reflect on and trace my evolution from an extremely angry girl to a less-angry-but-still-badass woman.
My parents emigrated from Hong Kong to Indianapolis, Indiana in 1972. I was born in 1974, the oldest of three daughters. The first sign that something was different about me was when my mom’s friend noticed I couldn’t lift my head up when I was around one-and-a-half. My neck was too weak to support my head while crawling so I transitioned from sitting to walking when I was a toddler. A neurologist diagnosed me with a form of muscular dystrophy called Spinal Muscular Atrophy (SMA) when I was about two.
My parents told me they cried when they first heard the news of my diagnosis.
SMA is a congenital neuromuscular disease characterized by progressive muscle atrophy and weakness. At the time of my diagnosis, there was limited understanding of the prognosis of the disease. The doctor told my parents that I would not live past 18. My parents told me they cried when they first heard the news of my diagnosis. Mom cried at home while washing the dishes and dad cried at the office—they were in a new country, speaking a new language and starting a family all at the same time. My parents had little contact or interaction with people with disabilities so they did not know what to expect. This turned out to be an advantage because they raised me as best as they knew how, relying on their intuition and common sense. I am thankful to be born first since they basically practiced their parenting skills on me and expected me to lead my sisters by example, regardless of my disability.
My mobility evolved over time ranging from walking as a young child, using a walker and manual wheelchair at age seven, to switching to an electric wheelchair at age eight, in addition to other supports that I currently use. As a toddler, I had hip dysplasia that was treated with surgery. After the surgery, I had to wear a metal and fiberglass brace at night that held my legs apart. I could not fall asleep easily, always begging my parents to leave their bedroom light on. Their lamp shone through the hallway into my door, a reassuring beacon in the dark. My mind would wander, trying to forget the soreness of my hip muscles that felt like rubber bands about to snap. In my first act as Houdini, I slowly learned how to reach and loosen the Velcro straps that secured my legs for some relief.
With the hip dysplasia slightly improved after surgery, I walked like a duck, waddling and leaning to one side at a time since one leg was longer than the other. This type of walking was uneven and unsteady. I fell and scraped my right kneecap so often I developed scar tissue the size of a coin. By the time I reached age seven, it was exhausting to walk. I huffed and puffed and could not keep up with my peers. I was afraid I would fall and grasped at chairs and handrails for support. Danger constantly swirled around me on the playground; kids at recess frightened me. I stayed near the classroom during recess, afraid to go into the nebulous gravel pits where all the cool kids gathered. I buried myself in books such as Fantastic Mr. Fox and couldn’t wait to go back inside to the safety and stability of my
classroom desk when the bell rang.
…it was my primary encounter with physical harassment because of my disability.
One day I ventured onto the black asphalt to join my classmates during recess. Three big girls approached me. I’ll call these girls Piper, Phoebe, and Paige. Piper was the ringleader of this trio. She had a large mass of curly hair to match her towering figure. They were curious about my sudden appearance on the asphalt, their turf. One thing led to another and BAM! Piper pushed me down onto the sticky hot asphalt. I injured my foot when I fell and later that evening my teacher called home. She asked who pushed me and without thinking I said Piper. Piper got in trouble and went to the principal’s office. This did not bode well for me. The next year in third grade there were rumors swirling among the playground grapevine that Piper was “out to get me.” The Revenge of Piper: There Will Be Blood, Part Two never occurred. Nothing like this happened to me again, but it is a memory seared into my mind since it was my primary encounter with physical harassment because of my disability.
Even though my teachers knew about my disability, the con- cept of accommodations was not commonplace among my parents and teachers, much less me in the 1980s. One day in second grade I fell behind when my class lined up and walked to the library room. I couldn’t keep up and struggled to carry my library books that were due that day. I shuffled back and forth, struggling to hold three heavy books until my arms gave way and they crashed on the floor. It was already in the middle of the class period and there wasn’t a soul in the hallway. Sweating and panting, I made it to the library sans books, another indelible memory. This was normal for me and I never thought of telling my parents about my problems. I did not know how to ask for help or say no until I was older. No one suggested I needed assistance going from room to room in school.
During this same time period, I had well-meaning friends who would encourage me to walk more. They would cajole me to walk a few laps around a room thinking it would strengthen my muscles. Physical therapists would also emphasize walking and the need to stay bipedal for as long as possible. Not wanting to try harder meant I was “giving up.” I went through all those activities because I didn’t want to be labeled a “whiner” and a “bad patient.” Most people probably think it is important to preserve mobility as long as possible. However, the cost of bipedal mobility was exhaustion, pain, and anger. No one asked me if I wanted to pay this price.
Eventually, I became weaker and could not stand or walk unaided. The physical therapist gave me a walker and expected me to use this device to get around in school. At this point, my legs strained and quivered as I pushed this aluminum frame with wheels step-by-freaking-step. I walked like Frankenstein, trudging slowly with this contraption. Squeak, squeak, squeak. Here comes Alice! I wish my adult self could have said this to my parents and doctors, “I am so f*cking tired, guys. Please, I tried my best to humor and please you all. This walking s*it ain’t worth it.” It is no wonder I looked so pissed off and miserable in some of my childhood photos.
By the time I was seven, my body rebelled and basically said, “Ok, the jig is up. I’m pooped and need some relief. Walking is so 1981.” I graduated from a walker to a manual wheelchair. The manual wheelchair was easy to transport in and out of the house. At that time, our home had steps in the front entrance like most ranch-style suburban homes. It quickly became apparent that I did not have enough upper-body strength to push myself and I soon transitioned into my first electric wheelchair.
It may seem ghastly to most non-disabled people to rejoice in the usage of a wheelchair, but I consider it part of my natural development as an autonomous human being.
The clouds parted, the disabled angels sang and I took my rightful place on my motorized throne. It was total liberation—I was in a comfortable position and most importantly, in control. I didn’t need my parents or other people to move me around—a push of the joystick and I zipped around at dangerously fast speeds. I could express myself through movement for the first time. It may seem ghastly to most non-disabled people to rejoice in the usage of a wheelchair, but I consider it part of my natural development as an autonomous human being.
As my body changed, I had to adapt to the built and social environment and in the same instance, those environments had to adapt to me. My parents built makeshift wooden ramps so I could enter and exit our home in my wheelchair. Eventually, my parents bought a van that was converted with a lift that would allow me to travel to places in my electric wheelchair with the family. Years later my parents were able to afford to have a home built with ramps and wider doorways. Clearly, socioeconomic status played a huge role in providing greater access, inclusion and freedom.
There were clear benefits to using an electric wheelchair. I zoomed around home and on the streets of my neighborhood, never on the sidewalk (sidewalks are for suckers). With this freedom of movement, this new mode of mobility presented a set of different challenges. I couldn’t “pass” anymore by sitting on a couch or leaning against a wall. The new identity as a wheelchair user placed a stark spotlight on me in public spaces. I quickly learned that walking is the normative mode of mobility—anything that deviates from this mode is different and unfortunate. I felt like a second-class citizen often as I encountered physical barriers such as a restaurant with steps or a public building with a separate “handicap” entrance in the back. Of course, I do not suggest that these struggles are centered on the individual, but are from the interaction of the individual and a society hostile to difference.
I had never been able to melt into the background during my childhood. This visibility made me acutely aware of the need to carefully negotiate the social landscape at school and in public. At most, there were a handful of Asian Americans (no more than five) in my classes all the way through high school. In most cases, I was the only Asian American and almost always I was the only student with a physical disability. Always the only one or one of a few.
In elementary school, I was the only kid in a wheelchair mainstreamed in my local public school. I did not ride the school bus with my classmates. I took the shortbus and it took me to school 45 minutes early because its main destination was the district special education school after it dropped me off. The bus dropped me off in darkness before most teachers would arrive. I would sometimes sit in the cafeteria as quiet as a mouse, waiting for the sun to rise and watching my classmates come in the “normal-sized” yellow buses. Other days I would enter the classroom as if I was a cat burglar at midnight. Sometimes I would peek inside my classmates’ desks. Hey, what can you expect? I was bored as hell.
I think many people with disabilities would say they could deal with the difficulties of a health condition, disability, or an inaccessible environment. What can be truly perplexing and infuriating is the reaction and attitude of others. There are the general comments, stares, and whispers that occasionally happen when I am in public. Other times people would ignore me or ask if I am with someone, as if I am incapable of being by myself.
Here are some typical comments that I remember receiving as a child and young adult:
“It’s a shame you’re in a wheelchair, you’re so pretty.”
“How did you get like this? Were you in a car accident?”
“Don’t you wish you could play sports?”
“Oh, God bless you! I’ll be praying for you…Jesus loves you!”
“Do you know you can be healed if you accept Jesus Christ as your personal savior?”
Depending on my mood, I might respond politely and excuse their ignorance. Other times I would engage and challenge their misconceptions. Sometimes people would act surprised or bemused when I would verbally defend myself. It was as if the idea of responding with an intelligent counterargument was absurd, which made my blood boil.
One of the most bewildering experiences I had related to faith and disability was when I went to an evangelical revival with Mom and her friend. For my Mom in particular, Christianity and the church community sustained her as she dealt with the initial shock of my diagnosis and the various challenges as a parent of a disabled child. I wasn’t really involved in this decision to attend the revival since I was about eight or nine years old and easily induced by a pack of bubble gum. It was cherry-flavored Bubble Yum bubble gum and I got to have the entire pack, not just a single piece. I didn’t have to share this with my sisters.
There was a lot of singing, swaying, and preaching at the revival. People closed their eyes, fervently praying with their hands raised, speaking in tongues. Near the end of the service came the big finale—the preacher called for audience members who wanted a blessing and a chance to be healed by the power and spirit of the Almighty. Mom took me down to the front of the stage. When it was my turn the preacher put his hand on my head, praying. Someone swung open the footrests on my wheelchair. He held my hand and I stood up and took a few steps. The crowd went nuts. She…has…risen!!!! I was Ronald Reagan, Jesus’ long-lost baby sister, and Justin Bieber all
wrapped in one.
If I had the chance to address the ecstatic audience, I would say, “Attention! I use a wheelchair but can still take a step if someone helps me. Just because I use a wheelchair, it does not mean I am paralyzed. What you are witnessing is not a miracle. The show is over.” I never believed in miracles, at least when it concerned healing or curing me. My brief experiences with “trying real hard” and “hoping to get better” never materialized for me. I can’t say I was angered by this memory, but rather puzzled by the whole spectacle.
What I think goes unsaid among some Asian Americans is the cultural tendency toward exclusion of people with disabilities and shame about disability in general. Among the Chinese Americans in our small community, some people would ask my parents why they took me out in public with the whole family. After church services one Sunday an auntie from China said to me, “Do you know how lucky you are?” She said it in regard to living in the United States, having a wheelchair and a supportive family. I don’t know why, but the question irked me greatly. What bothered me so much about this question was the presumption that I should be grateful for merely existing. Geez, Mom and Dad, thanks so much for not aborting me, especially if you knew what a burden I would have become. Conversely, I have seen many Asian American families dedicated and supportive of a family member with a disability. My parents and sisters were never ashamed of me—all of our major activities included me to the fullest extent possible.
What I think goes unsaid among some Asian Americans is the cultural tendency toward exclusion of people with disabilities and shame about disability in general
A major turning point in my politicization as a disabled person happened during my sophomore year at Carmel High
School. I took an elective, Drama I. To take Drama II the following year you needed a passing grade. I got a B and didn’t think twice about signing up for the class. When I met with my guidance counselor, she looked uncomfortable and asked me to speak to my teacher whom I’ll call Ms. Windsor. Ms. Windsor explained to me that I could not take Drama II next year because there was a required physical component: pantomime. Students had to act out a story in detail by using physical gestures and movements. I asked her why couldn’t I do the same within my abilities such as a pantomime of a person doing something like sitting down eating a meal. She refused, saying it was not “physical enough.” The idea of a reasonable accommodation never entered her mind and my guidance counselor agreed. I tried to advocate for myself and failed.
It was a slap in the face—pure discrimination. She did not see me the way I saw myself—a person with limitless potential. She looked at me and only saw the functional limitations of my body. I felt so disillusioned and disappointed by my teacher’s response. I always thought educators and counselors would encourage students and advocate for them. This was one of several instances of blatant discrimination I experienced when I was in high school. The immediate consequence was the social distance, not advancing with my cohort of drama nerds. I remained active in the Drama Club, but it was not the same. I regret not fighting back harder and taking the issue to school administrators. After this singular experience I swore to myself that I would never let anyone do that to me again.
Full of teenage angst, I found refuge in places I felt comfortable and unhindered. I went to the school library during lunch period to avoid the maddening crowd. During these hours at the library I learned about the disability Mecca known as Berkeley, California. Reading about the Independent Living Movement opened my eyes to another world that I wanted to be part of. I realized I was part of a social movement at a particular moment in history. Disability was part of my social, political, and cultural identity as much as being Chinese American and female. I occupied a place within this larger context and this awareness helped me make sense of my experiences and emotions. I went to college in 1992 and discovered Disability Studies and the sociology of disability. I felt such a kinship with historians, philosophers, sociologists, and other writers1 that critically looked at disability. Paul Longmore, Irving K. Zola, Erving Goffman, and others were the first to blow my mind. They provided various conceptual frameworks that reflected some of the tensions and social processes involved in my everyday life. The fact that some of these scholars were disabled people just like me encouraged me even more, knowing that my ambitions were possible. I channeled the anger and frustration that I could not articulate and understand as a child into writing and research about the disability experience as an adult. It was the beginning of my odyssey in disability research and activism.
Dear reader, this trip down memory lane has come to an end.
To that nine-year old girl in the photo with round-apple cheeks: “I know you’re tired and there are times when life sucks a lot. You may not believe it, but when you grow up you’re going to have so much fun and do many exciting things. The world is going to open up for you. Laws like the Americans with Disabilities Act and programs such as Medicaid personal care services are going to help you live your life the way you want. Most importantly, you will be in control and will have numerous choices. You are going to live the greatest city in the world, San Francisco, and become a coffee fiend. You are going to become a notorious night owl. Just hang in there, keep reading and stay angry.”
1. The writings include: Gaylene Becker, Disrupted Lives: How People Create Meaning in a Chaotic World (Berkeley: University of California Press, 1999); Michelle Fine and Adrienne Asch, eds., Women with Disabilities: Essays in Psychology, Policy, and Politics (Philadelphia: Temple University Press, 1998); Carol Brooks Gardner, Passing By: Gender and Sexual Harassment (Berkeley: University of California Press, 1995); Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Touchstone Books, 1986), and The Presentation of Self in Everyday Life (New York: Doubleday, 1959); Paul K. Longmore, Why I Burned My Book and Other Essays on Disability (Philadelphia: Temple University Press, 2003); Jenny Morris, Pride Against Prejudice: A Personal Politics of Disability (London: The Women’s Press, 1999); Michael Oliver, The Politics of Disablement: A Sociological Approach (London: Palgrave Macmillan, 1990); John Swain, Vic Finkelstein, Sally French, and Michael Oliver, eds., Disabling Barriers—Enabling Environments (London: Open University Press, 1993); Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996); Irving K. Zola, Missing Pieces: A Chronicle of Living with a Disability (Philadelphia: Temple University Press, 1982). Return
Originally published in Amerasia Journal 39:1 (2013): 108-117.