The first memory I have of knowing that I was different was when I was five years old and a caseworker entered my house to verify that I existed.
At the age of one and a half, I was diagnosed with a chronic disease called Spinal Muscular Atrophy, Type II (SMA). This left me in need of constant care and, at times, hospitalizations. My whole life, I’ve been confined to a wheelchair, and the disease has always affected me profoundly, on a physical and mental level. I have limited range of motion and strength in my arms, muscle weakness affects my speech and breathing, and, like a monkey on my back, SMA has been a constant reminder of my fragility and mortality.
In order to comply with Pennsylvania’s disability requirements, a state–appointed caseworker had to make regular home visits to make sure my needs were being met under my parents’ care and that my parents were not lying about my medical needs. These visits would leave me confused and annoyed. I still remember the events that took place the first time a caseworker entered my house and the emotional impact it had on me.
The time read 8:09 a.m. on my white clock radio. I wore my favorite pink satin nightgown. My mother came to lift me out of bed and enclose me in my robe. She whispered in my ear that a gentleman was here to meet me—he’d arrived early—and he wanted to ask me some questions. As my mother carried me down the flight of stairs and sat me in my wheelchair, I felt the man’s eyes on our every move. This strange man sat with a scrutinizing look and asked me if I live in this house and do I normally wake up so late? I quickly turned to my [End Page 210] mother and gave her a perplexed stare. Why was this person here at all, and what right did he have to inquire about me like this?
Later, my mother would explain that the man was there to make sure that she was not lying when she asked the government for money to care for me. I endured countless visits from that caseworker over many years. Finally, I asked my mother, “When is this man going to stop visiting me and asking me the same questions?” She looked at me and tenderly replied that when my father finished his residency program, then we would have enough money to pay for all my care. I accepted this response and continued playing with my Barbie. Two years later, my father completed his residency program and the visits from the caseworker stopped.
In eighth grade, I left an all disabled school and enrolled in a mainstream public school, which seemed odd to me. I asked my parents why the change in schools? My parents explained that they will not live forever and in order for me to live outside an institution, I will need a salary that is above average to pay for personal care. They went on to explain that the only way to accomplish this goal is to succeed in school and to perform better than everyone else. They informed me that because I use a wheelchair, prospective employers will view me as daunting and they may be less likely to hire me. They stressed that the only way to stand out above other non–disabled candidates is to excel in an academic environment. Mom and Dad have always ended the conversation by reassuring me that as long as they are alive, they will make sure I accomplish everything I set out to achieve and that I never feel alone.
Since that conversation over twenty years ago, I had only one goal in mind: employment. The possibility of being institutionalized has always been my motivation for persevering through late nights of writing papers and studying for exams. As promised, my parents were the ones who proofread my papers and stayed up with me in order to help me to bed once I was done. When I graduated from the University of Pennsylvania, as I was...