Update : 2017.10.10  Tue  No : 489
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People
Grown-up: A Lifelong Journey for My Sister

On Aug. 16, Jang Hye-yeong, who runs the YouTube channel “Serious Sister,” successfully initiated the project “Grown-up” by gathering 54,166,564 Korean won (US$47,913.81) from 1,249 donators. People know Jang as one of the pioneers seeking rights for social minorities, but in her first project about her disabled sister, she played two roles: a heartwarming older sister who supports her sibling to find the courage to stand up for herself, and passionate revolutionary worker who continually encourages others to do the same for other people with special needs. With her ability to switch between stark and tender, personal and social, sweeping and detailed, her project has attracted a larger audience. The Argus spoke with Jang Hye-yeong about her ongoing project, and what it is like to do such important work.


The Argus: Would you please introduce yourself?
Jang Hye-yeong (Jang): My name is Jang Hye-yeong and I am currently working as a freelance video maker. I also run a YouTube channel called “Serious Sister,” which tackles the problems of today’s society relevant to me. The videos I have been making are about the issues that are probably not acceptable to a lot of conservative ears, but I find it important to be aware of what is really going on in the world.

The Argus: What was the motivation that made you jump onto YouTube?
Jang: Social minority issues have always been a part of my life because I grew up in a poor family and have a younger sister who was born with a pervasive developmental disorder. Also, I have been discriminated against as a woman. These conditions influenced me to shape my own identity and contemplate the human rights and blind spots in society, which I felt the great urge to talk about. I had to get these things out of me in some way because if you bottle things up, it is just not good for anyone or for society.
But the thing was, the issues were so broad that I experienced difficulty at the thought of starting to explain them. I am the type of person who strongly believes in the importance of looking deeply into the crevices of thoughts and beliefs being made. In order to understand society, I thought I should let people know where their thoughts come from. Having been doing it just shy of a year, this pretty much sums up the reason I am running a YouTube channel.

The Argus: Please tell us a little bit about the project “Grown-up.”
Jang: This project is about getting stability in my 28-year-old sister’s life who has been isolated from society for 18 years in a long-term care facility, since I was 13, at a fairly young age for both of us. So I brought her to my home in Seoul from a residential institution for the disabled, and we are going to blend in, mingle with society and share the process on YouTube for six months. It is called a “deinstitutionalizing” project with my sister representing the disabled.

The Argus: How did you come up with the name “Grown-up”?
Jang: People treat someone as an adult when he or she gets to about 20 years of age. However, when it comes to a person with a psychiatric disorder, people do not treat him or her as an adult but as an ill person. Although my sister is already an adult, she still says things like, “Once I become an adult···.” out of habit because she has been told repeatedly, “These are things only adults can do. You can do them when you grow up.”
However, I believe that no matter how old they are, all people deserve a certain amount of respect. My sister should receive care that does not base its discrimination on age or illness. But most importantly, I want to prove that the people who do not think my sister can grow up are wrong. That is why I named the project “Grown-up.”


The Argus: What drew you to work on this project?
Jang: I have been thinking about discharging my sister from the hospital for a long time. But the ultimate reason that made me decide to take her home was an internal whistle-blowing that came into action three years ago. It uncovered the reality of what was happening in the hospital where my sister was housed. The hospital did not treat the people who were struggling with developmental disorders fairly. What was worse, it was too easy for social workers to assume that people with disorders were not capable of doing anything without their help. What was missing was understanding and compassion for individuals who have developmental disorders, and recognition of the competencies each person demonstrates.
After finding out the truth, I had to fight against the hospital, but it was unsuccessful as there were so many parents who did not want the hospital shut down. I learned over the years of fighting that the service offered by the hospital is like care in disguise. And it took me three years to process everything so that I could live together with my sister.

The Argus: Can you give us more details about the process of creating the project?
Jang: It has not only been a month since the project started. The project is a combination of three things. First of all, we are going to create our daily routine that works for both of us because spending 24/7 with my sister is a challenge in and of itself. I think it has a significant meaning as I am officially reuniting with my sister after 18 years.
Second, we will be looking for as many things as possible that we have not done before, and I believe that this process would be a great help in finding a job for my sister in the future. There are these moments of clearly signaled structural violence throughout Korean society that make it impossible for people with developmental disabilities to have opportunities. That is why we added it into our plan.
Last but not least, we are planning to meet people who share the vision with us. It could be a person who is also in the same situation as my sister, or a member of a family just like me, or activists and pundits who work for the rights of those with special needs. Anyone who can influence me to stand up for what I believe in, and supports issues other people face is welcome to meet with us.

The Argus: What makes you keep moving forward?
Jang: To me, one of the big issues was the idea of being independent. I considered the meaning of “being independent” for a while, and I think I got the answer. Being independent does not necessarily mean that you can do everything without any help from other people. It means that you hit the road to find who you actually are with the care and guidance of people.
I want my sister to stand up for herself, and whatever it is, whatever she wants to do or be, I will support it, as long as she has her character, integrity, and self-respect intact. All the ways my sister tries to stand up for herself will reinforce this idea.


The Argus: What has been the hardest thing about dealing with the project?
Jang: I find it difficult to figure out the supporting policies and welfare services provided for adults with developmental disabilities. There are not any platforms where the government gives citizens better access to information about what is being offered.
As my sister and I are now living together in Seoul, I need to leave my sister at a daycare center for the people with developmental disabilities in order to keep focused on my work. But my sister does not meet the requirements since she has not lived in Seoul for more than six months. That is why I could not help but take a leave of absence from work for six months. Having been given the opportunity, I will push ahead with the plan and share our experience with more people out there.

The Argus: What is something that you would like to share with Korean society?
Jang: There are two kinds of stories which have existed so far: the great stories about triumphing over adversity such as Hellen Keller and the miserable stories about the disabled struggling to eke out a living. These stories are somehow playing the role of projecting a “special” image onto people with disabilities, which I think is not good. And little is known about the real lives of the disabled in Korean society, especially when it comes to people with developmental disabilities. I do not want to dramatize the project about my sister, because I know for a fact that she did nothing to deserve to be born disadvantaged. She just happened to be born with developmental problems.
So I want to start in a very succinct form, just ploughing through all these narratives, and develop the frontal lobe of a story about an individual, not just a person who has an illness. I will make in such a way that considerable time will pass between each chapter. Then, you will get to see how, in the time between the two stories, or between the three stories?between one and two, and two and three?how time has shaped the person. Since it is mirroring what we experience every day, I hope my project will open up the possibilities to resonate with people and will help them to realize there is no big difference between the way we live and the way they live.

The Argus: What is next for you?
Jang: My project, which is about my life, is meaningful in that it encourages society to question stereotypes people have toward the disabled. I definitely want to keep speaking up for issues that I care about because it is something I find to be part of who I am. As a valuable, thinking member of society, I have to live my life with my eyes open and stand up for those who are being abused, and who do not have a voice. If there are more people who think in this way, then my vision that “society is sustained with love and good” will become a reality.


“I want to tell the normal story of my sister and inspire people with different viewpoints,” said Jang. It might be a great challenge for the Jang sisters who aim for the status of “being self-reliant” in a society where it is common for people to send their developmentally challenged family members to a hospital, and think they did what is best for everyone in that situation. However, what she wants is not a radical change in their politics, nor improvement of their social conditions from the beginning. She will be satisfied if people accept her sister as one of the neighbors passing by on the streets.  She takes action on behalf of the rights of those with special needs.  Jang longs for her project to be ended when her sister grows up to become a part of our society. 


Reporter of National Section

2017.10.10  No : 489 By Moon Chae-un dalnimo@hufs.ac.kr
 
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