The following is re-published with permission by the author and TASH.org.
Growing up Asian American with a Disability
By Grace Tsao
TASH Connections 2009, Volume 35, Number 2, 25-27.
Disability is still a taboo topic within many parts of Asian cultures. People with disabilities are often seen as outcasts of society and worthless citizens. In many modern-day Asian countries, people with disabilities are still regarded as incapable of becoming educated, functioning members of society. Therefore, they are often forgotten and fall between the cracks. This old school of superstitious thought teaches that disability is some sort of punishment and promotes the idea that being different is always a horrible thing.
Growing up as an Asian American female with a disability, I was always fully aware of how my culture played such a significant role in my life. This was especially evident in the way my parents tried to shelter me. I can remember distinct times when I was younger when my parents did not allow me to attend certain functions where a lot of first-generation Chinese, other than family, were in attendance. However, my younger brother could attend. I could not understand the reasoning behind this — after all, I was the eldest. I began questioning my parents. Their response was that they were protecting me from the Chinese elders who would not understand or accept my disability. They told me that these traditional Chinese would gawk at me and gossip about the fact that I use a wheelchair. They would look down on our family because only a family who has done wrong would deserve such a fate and shame. I didn’t believe my parents at first. In fact, I accused them of being ashamed of who I am. They kept assuring me that they loved me no matter what, and that this sheltering was for my own good, because not all people would view disability the way we did. I believed them.
My mother would often tell me that the perceptions these people held about disabilities came from superstitions in Asian culture that bad things could only happen to people who have done wrong; that if you live a decent life and are essentially “good” you are virtually untouchable. Where the distinction or judgment about what is “good” or “decent” comes from is debatable. In my culture, however, being diagnosed with muscular dystrophy at age seven meant being seen by some as a form of chastisement or bad karma inflicted on my family for moral wrongs my family may have done in the past or present. In fact, any disability would fall under this category of “punishment,” whether from birth or as a result from an accident.
Even my grandmother possesses these thoughts. She will often make comments about people who seem to encounter many hardships by justifying their fate, saying they probably deserved what happened to them. For example, she made a similar comment about a family who had a relative stricken with cancer. These comments are rather harsh, but superstitions are often embedded in a particular culture. And like all superstitions, they can be proven wrong as people are willing to look at individual experiences and become more open-minded.
This stigma of being a triple minority has followed me throughout life. I have always been fully aware of my existence as female, disabled and Asian American. I began having negative perceptions about Asians. I had no concept of what Asian American was. All my friends were White; I avoided Asians at all costs. After all, they had negative ideas about me, so why should I try to get to know them? It was not until halfway through high school, when I began to join extracurricular organizations, that I changed my outlook. I met many open-minded Asian Americans who did not treat me as an outcast and who accepted me. I had a sudden realization: I was prejudiced and hypocritical. I had been judging people based solely on outside appearances and stereotypes. These were the very things I hoped others would not judge me by.
Often, Asian Americans do not grow up with the same mindset as traditional Asians. They are influenced by the whole concept of East meets West but do not necessarily adopt the traditional closed-minded values. I’m not saying that all immigrant or first-generation Asians are closed-minded, that would be closed-minded of me. No generalizations can be made about any group of people. I also realize that, as people from across the globe are being educated about disabilities, these traditional ideas are slowly being replaced by more accurate perceptions. My thoughts and views are shaped my own personal experiences.
There are many aspects of the way my parents have raised me that would have differed dramatically if I would have been able-bodied. In many ways the situation of me being disabled overshadowed many traditional Asian values they may have held. They did not exert on me the academic pressures that are common to Asian households. Most Asian families that I knew put constant pressure on their children to be more successful than everyone else academically. Being second best was not enough. Now, some would argue that is not necessarily a bad thing. But telling your child that failure is not an option at any cost can be damaging to a child. I have known Asian kids who felt that they must constantly “be the best,” in order prevent disappointment in their parents. They have gone as far as making important life decisions such as what they plan to devote their life’s work to in order to satisfy their parents. In many cases kids chase their parents’ dreams, not their own. The constant tensions and not pursuing their own dreams may lead to burnout and eventually failure. I know my parents would have pressured me a lot more to succeed academically if I did not have a disability. But, they did care about education and wanted me to succeed at my own pace. Failure was all right if I tried my best. They always expected that I would attend college and receive my degree, despite my disability. They encouraged me to pursue writing, which is often not as lucrative or stable as those fields dealing with science and technology. I feel that my parents’ more lackadaisical attitude than most Asian parents helped me to succeed. I am doing what I want to do in life and on my own accord. I received my Bachelor’s degree in Journalism and am pursuing my Master’s degree with a focus on Multicultural Education. Culture and writing has always been incredible influences in my life.
The subjects of romance and marriage were not an issue because like many people, my parents never thought that people with disabilities were capable of being involved in romantic relationships. So this topic has never really been discussed. However, lately my parents have come to a realization that this is possible. I really feel that they would be very accepting if I were to marry someone Caucasian, because they feel that an Asian man would never be able to look past my disability. If he could, his family probably would not. This is speculation on my part because I really do not know how my parents feel. I can only make inferences. I can see this in the way my mother reacts to my Asian friends. She is almost surprised that someone who is Asian American can look beyond my disability and accept me as their friend. This is due to her own innate prejudices about how people of Asian decent view the disabled. Staying within my own culture concerning issues of relationships and marriage would have also meant more to them. I can see all of this from the extremely different reactions they have on these issues when other relatives or other Asian families are involved. In many ways my parents have become much more open-minded in the way they raised me because of my disability.
Having a relationship at this point in my life is a very touchy subject. As someone with a disability, it is difficult to find someone special that will look past my disability. In this society where physical perfection in women is so important, I have yet to find someone that will look past my outer shell and into the person inside. Much of this comes from the fact that I am in a very transitional period in my life. I am slowly crossing the gap between late adolescence and into full adulthood. At barely 22, I feel that guys my age have just begun to care less about what others think and are beginning to decide what is best for them. As young people, we are very influenced by what our peers think. Because of my experiences as a triple minority, I know what it is like to be judged by stereotypes and outside appearances so I strive hard not to judge others by the same.
Being a triple minority is a difficult role to play in life. You don’t fit in within mainstream society or your minority in-group. You must also struggle as a female, in a male dominant society. You are not sure where you fit in. I believe that you need to keep an open mind and try to educate others. If you don’t, you’ll go through life on the outside looking in.
Growing up Asian: 10 Years Later
I first wrote a version of the article “Growing up Asian American with a Disability” as a 19 year old undergraduate student. Since then, an updated version was published in Standards: The International Journal of Multicultural Studies when I was 22. When I wrote it, I never realized how many people this short article would touch in the ensuing years or even some debates that matriculated because of it. The Standards article generated so many responses. People from all walks of life have contacted me to tell me how much this article affected their understanding of disability and culture.
The article was the experience I had as a young Asian American woman with a disability growing up in a predominantly white and Asian community. It was not meant to demonstrate the experiences of others in my situation and was not meant to reflect an all encompassing truth about all Asians and how they feel about disability. That being said, I’ve had many Asians with disabilities tell me that my article touched on the feelings they have felt their entire lives and many Asians without disabilities have also validated my feelings. This was only one portion of all the hardships I have had to endure with in my life. It was a very personal article and I chose to focus on the discrimination I faced within my own culture.
As an insider, being critical of your own culture can have implications and can be an arduous place to be in. Many feel that it may invite criticisms from the dominant culture which can incite further stereotypes of minority culture. But it is important to maintain a critical eye. At the same time, it is very difficult to confront your own prejudices as well, and we all have them. But, the emotions I felt were real and the experiences I had were real, and although the article focused on only one aspect of growing up as an Asian American with a disability, the complexities of discrimination and alienation I felt have been vast. In fact, as an Asian American woman with a disability I face prejudice every single day from people of all backgrounds and in all arenas. I have faced discrimination in housing, at the workplace, in school, and in public and private spaces.
It is important to examine aspects of race and culture as it relates to disability because racial and ethnic minorities are already at a disadvantage in the dominant white society, but factor in a disability and the disadvantages and problems increase greatly. It is significant to examine the experience of being a person with a disability from a cultural context. Asian Americans who feel alienated from the dominant culture often find solace in their own communities. But people with disabilities, even if they are members of a minority in-group, often feel alienated from their own cultural group because of the stigma attached to an obvious disability. So, there is often no sense of belonging for many Asian Americans with disabilities. It was challenging enough growing up in a society where I am a triple minority, but feeling like those in my own community did not support me was particularly difficult because I didn’t know where I belonged. That is especially hard for a child. I still struggle with this to this day.
Life has changed a lot for me since my time as a young student with a disability. At the time I wrote “Growing Up,” I had not yet experienced romantic relationships nor had I been in the workforce full-time. Although, I went away to college and experienced on-campus life, I had not yet moved away from the comfort of my parents’ home. Now at 31, I have finished my education, work full-time, live independently, and am in a long-term relationship. I am still realizing everyday that I will always encounter those who are ignorant and discriminate against those who are different. But at the same time, there is a world of open-minded, progressive people that do not immediately judge others based on ignorance, fear, or stereotypes and who fight for what is right and just. I count many of these individuals as my closest friends, individuals from all races, cultures, disabilities, and sexual orientations. I have also encountered many people who have been able to alter their stereotypes and perceptions of disability from knowing me and others with disabilities. That is the key, to be out there experiencing life, affecting change one person at a time. With challenges and hardships, there are also joys and benefits of living in such a diverse society.
I have also had to navigate the tricky politics of race, disability, and gender in the context of dating and romantic relationships. I have dated men of many races and have realized the complex nature of being an Asian American woman with a disability, how the intersection of all these aspects of my identity have affected men who have been romantically attracted to me in regards to everything from fetishes, to physical, emotional, and, mental attraction, etc. There is often a fine line between true open-mindedness and succumbing to certain stereotypes of both disability and race, images such as the passive Asian woman to the infantilization of people with physical disabilities. It has sometimes been difficult to tell if certain men have liked me for who I am versus what I am. I have been dating an able-bodied white man for almost three years now and our relationship has been a constant education for the both of us because of our differences in race, culture, class, and disability. But, we share a special bond and a mutual respect, understanding, and acceptance of each other that has made our relationship work.
In regards to my family, they have also made strides in not worrying as much about what others might think about disability. They are much more open to me going to events where large numbers of Asians are present. They realize that Asian Americans are making strides to address disability issues in their communities. I know many Asians who are dedicated to disability rights in the vast and diverse Asian American community. But, I also realize no matter how old I get my parents will always worry about me and how others respond to me. Much of this is cultural while another part is just the natural instinct as parents to protect your child no matter what their age.
It has also been challenging to achieve self-acceptance and I am often my own worst critic, but at the end of the day I am who I am because of being a Chinese American woman with a disability. My thoughts, beliefs, and identity are intertwined with the politics of race, gender, and disability. All those aspects and the experiences I had in my life create the whole of me.
About the Author
Grace Tsao spent much of her career working at non-profit organizations as well as state government focusing on issues centered on disability rights and services. She was also a grant writer at Loyola University Chicago where she worked with diverse programs that emphasize social justice at an urban institution of higher education. She teaches college and university level Sociology courses online.
She was involved in various organizations in Chicago that centered on social justice, including having served on the board of a small grassroots organization that focuses on art, activism, diversity, and social justice. She was an advisory board member of the Persons with Disabilities Fund at the Chicago Community Trust and was a grantmaking committee member of the Asian Giving Circle which funds non-profits that support the Asian American community.
Grace has a B.S. in News-Editorial Journalism from the University of Illinois at Urbana-Champaign. She also has a M.S. in Cultural Foundations of Education with an emphasis on Multicultural Education from the University of Wisconsin at Milwaukee and a M.A. in Sociology from Loyola University Chicago where her focus was on race, gender, and disability.
Grace was diagnosed with Muscular Dystrophy around seven years old and uses a power wheelchair. She lives with her husband and their two cats.