In the future, I would also like to provide a transcription of the audio tracks. If you are interested in helping me do this, please contact me.
I am an American born Chinese and born raised in the suburbia of New York. As a kid I loved watching mystery and medical dramas but I could never solve the enigma of my autistic little brother. My brother’s condition peeked my interests in the sciences. Went to college in Pennsylvania, graduated with a BS in biology May 2014. I’m currently aspiring to enter medical school. I am also a foodie and love playing video games and watching anime in my spare time.
This is a long interview. I am still editing the rest of the tracks. More to come!
In the future, I would also like to provide a transcription of the audio tracks. If you are interested in helping me do this, please contact me.
This storyteller would like to remain anonymous. If you would like to reach out to them, please fill out the box on the Contact page.
What was your experience growing up with your brother?
People didn’t know about autism in the 1970s. Within the first few years of life with my brother, who is two years younger than me, I had a sense that he was different from me. My earliest memory involving him is when he first used the bathroom on his own. I could tell my parents were joyous about that achievement, and I felt that joy, too—I could tell it was a big deal that my brother had finally done something that most kids his age had already been able to do for a while, although I myself didn’t fully appreciate why my brother had taken so long to reach that point, how big a moment of success that really was, or how many more delays and challenges might be ahead.
In those early years I also remember seeing my mother crying on one occasion, and asking why she was upset. She told me she was crying about my brother because something was wrong with him and she wasn’t sure what to do.
So I guess I grew up with the sense that my brother was a heavy burden for my parents, and somehow I came to feel that I had to compensate for that. I had to be as perfect as possible because my brother wasn’t the child they had hoped for.
Are there traits or characteristics you've developed because of your experiences with your brother? What do you see as strengths and challenges from these experiences?
As a kid, my brother annoyed me most of the time. There were countless times when his jumping around, rocking back and forth, talking strangely to himself, and the odd questions he would pose to my friends simply embarrassed me. Luckily, friends and extended family have always been kind, patient, and compassionate. Occasionally there were more painful moments, such as encounters with unsympathetic strangers or the occasional detestable bully. Those unpleasant encounters don’t stand out in my mind, though. Maybe that’s partly because our family did so little socializing, or because my brother really wasn’t at all the spectacle that I imagined him to be when we were out in public, or because we lived for many years in a well-to-do New England town where the proper response to people like my brother meant looking away, staying quiet, and pretending nothing is amiss.
It’s humbling to have a sibling with autism—humbling early on just due to the mundane embarrassments, but at some point I came to appreciate how small achievements, like tying your shoelaces, riding a school bus, and just making it through a school day should not be taken for granted. The perspective this gives is something most people probably realize at some point in life, but having a sibling with a disability assures that you learn this lesson quite deeply and early on.
For better or worse, living with a sibling with autism probably helped me become better at dealing with a lot of different kinds of people, particularly difficult. I think I’m also better able to live with discomfort in the form of awkward silences and strange utterances. In some ways I also am less tolerant, though. I find ingratitude in other people to be particularly grating. I have sensitive buttons, some obvious, like people who make stupid remarks about “retarded” people, and some that I sometimes don’t even see, like when I make mistakes or can’t fix broken situations. I feel like a failure a lot of these times, which probably is a byproduct of growing up with the family dynamics I did.
How has your culture(s) played a role in how you see and experience ability versus disability? How has shame played a role in you and your family's experiences?
I’m not sure I can step back enough to see an answer to this question, but my assumption is that culture inevitably has shaped my family’s experience of living with my brother’s autism. It’s very difficult, though, to separate the individual from the cultural. For example, my parents did not develop much of a social network in any of the communities where we lived. Was that because their culture isolated them, either through creating differences in language and perspective that couldn’t be bridged, or through the shame of having a son with autism, or was it their unhappy marriage and individual personalities that contributed to their social isolation? I can’t know for sure—it probably was a combination of factors that can’t be neatly separated as causes or influences. Although I always had a sense that my brother wasn’t the son my parents wanted, they do not do the sorts of things I would expect “ashamed” people to do—they certainly did what was necessary to get him a decent education, whether or not in a school with “normal” kids. They encouraged him to vote in presidential elections, to get a driver’s license, and to seek and secure employment outside the home. Now that my parents are retired, they’ve developed a daily routine with my brother that is mutually dependent. My brother lives with my parents and therefore does not have to face the responsibilities of living completely on one’s own, and in turn, he helps my parents around the house and with yard work, shares in household chores and cooking meals, and keeps them company.
What is your role in your brother's life now?
I’m fairly removed from my brother’s day-to-day life since we live a couple of hours apart and I don't visit often. But he is never far from the forefront of my mind. When my partner and I talk about where we might want to live someday, I don’t feel like I can consider places where I would be too far away to return to my brother in a moment’s notice if he needed me. I consider job security to be a top priority in my career choices, which probably doesn’t distinguish me much from most people, but I feel a particular responsibility to earn a good living knowing that I’ll someday be my brother’s primary source of financial support. One positive consequence of the increasing rates of autism is that people are finally beginning to talk about concerns that my family has faced for decades, which is what happens to children with autism when they grow up. There aren’t many answers yet, given how long this issue has been flying below the public’s radar, but developments like the ABLE act seem promising. I keep an eye on developments like this and regularly consider long-term plans, such as housing and living supports, that might work best for my brother in the future. It’s sometimes stressful, but overall I don’t consider it a burden. If anything, my brother’s needs give my life much more importance than I think it would have without him. I think it’s an honor to be needed by a person like my brother.
Check out this interview I did with my dad for a piece I was writing from my parent's perspective about my brother. Enjoy!
How did the project form?
In the midst of Dorm Leadership Training, I finally had a moment to myself to continue to write my personal statement for the Watson Fellowship. I slipped into my room and began to write about different life experiences relevant to my project. As my typing picked up speed, my mind raced faster than my fingers to drown the paper with my thoughts until tears started to fall down my cheeks steadily. Covering my mouth with surprise as a sob tried to resound in my empty dorm room, I heard the voice of one of the deans saying, “This is supposed to be a personal project, so even if you don’t get the fellowship, the self-exploration is worth it.”
Going into my senior year of college, I already had a plan, I wanted to travel the world, and I was going to apply for every fellowship I could in order to achieve my post-graduate goal. When I started to apply for the Watson Fellowship, I originally wanted to write about transportation around the world, but I was told that it was too academic, not personal enough. As I started to brainstorm, I started to think about the identities that make up who I am. The three that seemed to intersect and resonate the most were having a brother with special needs, growing up with faith, and being Asian American. Through these identities, I started to form my Watson Fellowship. I wanted to travel throughout Asia understanding when and where did religion and ability intersect. The moment that I cried while writing my application was the moment I realized how much this project was starting to embody my life story.
Unfortunately, I was rejected from the Watson Fellowship and did not move on from the interview stage. The rejection felt like being slapped in the face with shame and coldly stabbed in the heart, but a fire was ignited in me. I was going to try again. After the Watson Fellowship, I applied for a Fulbright, Princeton in Asia, and Philly Fellows. In between Princeton in Asia and Philly Fellows, I applied for the Davis Project for Peace. Throughout the previous fellowships, I continued to connect my story to my drive for that particular fellowship, displaying my vulnerability on a platter. By the time I was working on my Davis Project for Peace application, I had modified and specified my project much more.
This time, I wanted to create a digital storytelling platform that started the conversation of ability and culture in Taiwan. Yet again, I was rejected from each and every fellowship, except each time, I cried the tears of a righteous warrior because I wanted to fight for this project. This project is very much an extension of some of the most important life experiences I’ve had in my short life. One of the scariest parts of life is sharing the deepest parts of yourself and being rejected and denied validation for your story. This is how I felt, how I still feel after being rejected from all of these fellowships because it felt like a rejection of my life story and who I am.
I know how scary it is to share your life story, and I hope that you will join me in being brave. The stories we share here at Reimagine Ability are ones that have not been heard, and it’s time to be heard. It’s time for collective healing as a community.
What was the inspiration?
It’s one of those stories; the ones that parents love to tell over and over. My older brother was born with Downs Syndrome, a hole in his heart, and partial deafness. When I was born, he instantly knew he didn’t like the new competition for attention. Unfortunately, my parents were oblivious to this fact, so they would naively sit us next to each other in the playpen or put him behind me in the stroller. This was when my brother would proceed to tear me apart by pinching me, biting me, and pulling what little hair I had. However, one day I waddled quickly up to my brother, smacked him across the head, and ran away. He, of course, sat dumbfounded. I had beaten him at his game because I learned to walk before he did. Slowly, he too learned to walk at the age of four. This childhood narrative reveals to me why I am a fighter, but also reveals the deep and complex relationship I have with my brother. He taught me to be a fighter at an early age, but he wasn’t done teaching me until I learned how to be compassionate as well.
Because of all the beatings I got from Nathan, I learned quickly that I didn’t like my brother at all. There were often times when my younger brother and I would gang up on Nathan and run away from him pretending he was the boogie monster. We “othered” him because we saw him truly as a monster who would bite and beat us up if we didn’t protect ourselves. However, in fifth grade, my mom sent me to a workshop at the children’s hospital called “My Sibling has Downs Syndrome.” After this conference, I realized for the first time that Nathan was a human being who felt real and deep emotions. Realizing this caused me to become filled with compassion and empathy for Nathan. From that point on, I became the one in the family who always advocated for him, and understood him. It is through Nathan that I have developed a heart to create holistic, beautiful, community-based social change. By the time I ended elementary school, I was already organizing sit-ins at the lunch table or the back of the bus to stand up to bullies. Nathan has not only inspired me to dedicate my life to justice, he has also been my spiritual inspiration ever since I was young.
I believe in miracles, and I believe in God. When I was born, I came into a family that learned how to believe in God through Nathan. In his twenty-four years, he has had two open-heart surgeries, twelve machines hooked up to him in order to keep him alive, and has had his immune system recover from chemotherapy medicine within 48 hours. Doctors still cannot explain how he is still alive. On the other hand, despite my parents experiencing these hardships and miracles, they found it hard to accept Nathan into their hearts. In Asian culture, it is seen as the parents’ fault when their child has mental or physical disabilities. They blamed themselves and thought they had done something wrong to have a child like him.
One night my dad had a dream where his boss told him, “I have a very special project for you. This project will take you more time, effort, attention and no family life. Do you want to take the position?” Without hesitation, my dad responded, “Yes, it would be my honor.” Suddenly, after he said this, he woke up and heard God’s voice saying, “I am the King of kings and the Lord of lords. Nathan is my special project for you.” When my dad heard this, my parents were able to accept and love Nathan completely because they understood that it was for God’s purpose instead of their wrongdoing.
Seeing my brother’s pure joy everyday, I cannot help but feel a deep connection towards God because Nathan is truly a living miracle. However, while Nathan has always been my spiritual inspiration, he brought another meaningful person into my family’s life. Because my parents worked full time, we were eligible to have a home health aid to help take care of Nathan. When I was seven year old, Nathan was ten, and Mathew was four years old, Ruth came into our lives. From an outsider’s perspective, Ruth was an older white woman who was our home health aid. Nonetheless, because she was always there when we came home from school, she became one of my best friends. Ruth was the person who loved Nathan before we all learned fully what it meant to care for Nathan in the way he needed. Because she knew Nathan had no future in public school, she guided my parents in advocating for Nathan to be able to attend Perkins School for the Blind and Deaf. Perkins changed Nathan’s life and our lives because the teachers were able to give him the attention he needed and show us all how to communicate more effectively as a family. Nathan even learned to jump, which to an able-bodied person seems normal, but Nathan was never supposed to be able to jump. Going to Perkins, Nathan gained life skills through holding several jobs. This was all because Ruth was someone who always looked out for the underdogs. She was the person who always comforted me when I came home crying because of a bully. She was my biggest fan whether I wanted to be a cosmetologist or fashion designer. Unfortunately, when I was a sophomore in college and Ruth was 85, she was put on hospice care. Spending my summer taking care of her failing body and lively spirit, I had one of the hardest and most rewarding experiences of my life. It was love wrenching to watch my best friend die. Being able to serve her in the same way she had cared for me was indescribable as we still joked around and shared our lives together. While at the same time, I watched her body slowly fail her. Ruth along with Nathan are the biggest influences in my life. Ruth has taught me how to be a strong, independent, and confident woman while Nathan has taught me how to be empathetic, silly, and intuitive.
Though I have found my family to be quite unique, it was not until I went to Cape Town, South Africa, that I found people who resonated with my story. In the church I was attending, they were hosting a women’s appreciation, and one of the women who spoke was Leigh. She told us how her daughter had medical complications at thirteen weeks and was not expected to live. As she talked about her and her partner’s decision to keep the baby and accept her potential special needs, I felt like my parents were speaking through her, and I was able to truly understand how they found the strength in this turmoil. After the event, I connected with her and ended up having dinner with her family. Their daughter ended up being born without arms but was beautiful nonetheless. Throughout the dinner, as Leigh was pregnant with their second child, I was able to give them advice on how to love both daughters despite their differences. This was the first time I realized my experience could relate to other people, and it made me want to continue to meet people where ability, culture, and spirituality intersected in complex and nuanced ways.
The story of my name comes from the depths of rich, deep, resounding grace. From under a waterfall where the water pounds over you, churns, mixes, and mists. From the depths of sacrificial love, Nathan was born to be a shining light. He overcame adversity and death to bring love to my family. My name means my connection with Nathan. The one who gives me the courage to stand up and fight. The one who gives me the compassion and empathy to love wholly. Queen Esther came from the depths of rejection to be the crowning jewel. She was radical and diligent. She was not perfect, but God used her to save her people from destruction. My parents saw the courage of Esther and took hope in life and afterlife and brought me into this world. She was a fighter: Esther, the star, the symbol of hope and courage, my birthright. My parents hoped that my birth would save my brother from the edge of death. Instead, Nathan brought me light and life. He shows me my purpose. 江 (Chiang) 沛 (Pei) 恩 (En), God’s grace overflows like a waterfall.