Disability isn’t an identity

“Don’t get any blood on my seat covers,” the taxi driver said. I couldn’t feel anything, all I saw was the yellow of my severed tendons drenched in what looked like tomato juice. I lost consciousness when my right leg was crushed. I woke up under the bus and all I could see was tubing and the backside of large tires. I was loaded into a taxi with my mother, her left leg was missing at the knee. I was 4 years old — at the time I remember thinking that I’d be missing my ballet class.

Renci Mercy Xie
Renci Mercy Xie

The next image I remember was the shaky ceiling of the hospital stairway. Since there was no elevator, I was placed on a stretcher for the doctors to carry to the emergency room. I was hospitalized on the fifth floor and my mom’s room was on the sixth floor.

Having just lost my right leg, I couldn’t use a cane, so I had to use a stool to move my body to get to my mom when no one else was around. Taking the stairs with a stool is dangerous and I often fell down the stairs. I took stairs all the time when I was in China, at first with a stool to see my mother in the hospital and later with a prosthetic leg to go to school.

There were no elevators in my elementary school, middle school or high school. As my grade level grew, the floor where my classroom was located became higher. The school wasn’t very big then and my weight was low, so taking the stairs with a cane hurt me, but it wasn’t unbearable. After graduating from high school, I was admitted to Southwest University of Political Science and Law, one of the oldest law schools in China. The school is located in the mountain city, Chongqing, famous for its hilly landscape.

There was a long, steep slope between my dorm room and the teaching building, both of which had no elevators. Moreover, the freshman classes were usually above the fourth floor. Seven years later, I still remember why I skipped class for the first time: my shoulder and leg were in too much pain and I couldn’t take the stairs any longer, especially after seeing my non-disabled classmates take the stairs so easily.

This was the first time in my life that I realized that I was “disabled.” But at 18 years old, I thought if the school building had an elevator, I wouldn’t have to take the stairs with pain and I wouldn’t be forced to tell myself that I was different from everyone else. I was not “disabled.” I encountered long, painful stairs on my way to class, which are my barriers to class and university activities.

In my sophomore year, I met Professor Zhu, who taught our human rights course at that time. One day, I was in Professor Zhu’s office and asked him the question that had always puzzled me: Why was I the only student with a disability in my school? Why are disability rights protections so bad? “Because the existence of people with disabilities is not known, it is difficult to guarantee rights,” Professor Zhu said. “You should speak up for the disability community.”

“Can I?” This was the first time someone said that to me, so I felt surprised and scared.

“If you can’t, who can? If you don’t stand up for the community, who will?” My professor was very firm. My scalp tingled and in that moment, I realized the privilege I had. As a disabled woman from a poor family, I could go to a regular school, I could take the university entrance exam, I could go to a nationally recognized law school — I was really lucky. And because I had been limited to my own experience, I never thought that I could also use my law major and knowledge to change the unfair situation for people with disabilities.

After that, I read more books about disabilities and interned at One Plus One, an organization to help disabled people in Beijing, both of which gave me a deeper understanding of disabilities. At that time, I started using a prosthetic leg and because I wanted to cover my two different legs, I wore long pants even in the summer heat. But my crooked walking posture still drew cautious glances from people who walked by.

During an ordinary day in a clothing store, I was in front of the mirror holding a skirt that I couldn’t remember the style of, but I remember clearly the careful gaze of the clerk who looked at my right leg.

I couldn’t take it anymore. I went back to my place and tore off the outer wrapping of my prosthetic leg to reveal the blue steel tube inside. I cut off the right leg of my jeans to reveal my prosthetic leg, went to the store and bought a dress to change immediately. It was a split-second decision, but I had been preparing for this moment for almost 20 years: to recognize my disability, embrace it and stop being afraid of the strange looks people give me when they see it.

Since then, I no longer cover up my disability. I won’t be ashamed of it anymore. It is designers who should be ashamed of their barren imagination when they cannot access space on an equal basis with non-disabled people.

People are not flawed; it is design that is flawed, the technology is flawed.

I was awarded a full scholarship to Syracuse University College of Law to pursue a Master of Laws in the Disability Law and Policy Program in 2019. Every morning, an accessible bus picks me up from class, and the law school building is equipped with accessible facilities so I don’t have to worry about where to go to class or whether I need to climb the stairs.

During my first year at Syracuse University, I rarely felt my disability because the barriers between me and society were removed by the robust and effective implementation of the Americans with Disabilities Act.

However, my options changed so quickly. I feel the pain of my disability clearer than before when I was younger and healthier. As a disability law student, I know that explaining disability in terms of social barriers is the easiest way to get social change, however, I must admit that there is no way to get beyond my physical body. When I lay in bed by myself late at night without communicating with anyone or any space, it is the disability that brings me pain. Disability, through pain, manifests its independence on me. If we only focus on social barriers and ignore individuals suffering from pain, we dissolve the light of the individual in the face of pain and suffering.

I thought SU was a fully accessible place until I discussed reasonable facilities with friends with other types of disabilities. One of my friends uses a wheelchair and he told me that most school buildings are not accessible for him at all. I didn’t understand because there are elevators in almost all teaching buildings.

“The elevator is so hard to find, and most of them are far away from the entrance,” my friend explained. “I am nervous each time I enter a new school building.” Five years later, from China to America, I realized my privileges again: having a new law school building that was completely accessible to me and using an expensive and high-tech prosthetic leg to walk. But not all people could find the accessible entrance or elevators easily. The narrow aisles also prevent my friend from freely moving in the classroom.

So, disability is all a meditation on how people face and treat the possible limitations of the physical body.

A design that is friendly to people with disabilities will surely benefit all because disability is not a fixed identity of the individual. It is a state brought about by the flowing limitations of society or individuals. Everyone has been, is or will be a person with a disability.

Renci Mercy Xie
SU College of Law student