Tae loves to get shaved ice after his summer day camp lets out at mid-afternoon and I indulge him once a week at either Hawaii Time or Snowy Village which makes amazing Korean shaved ice specialties. Lucas is still on his summer vacation and after playing in the pool and backyard all morning, I took him to pick up Tae and to enjoy a treat at Snowy Village. With Lucas trying to escape my grip and toppling over the tip jar as I pay for our treat, I finally manage to get him seated in his adaptive chair. He gets very fidgety in his seat and although secured in a belted adaptive chair, he will rock the chair which makes a noise when the chair leg hits the floor. I noticed a Korean women with her young daughter about the same age as Lucas seated two tables away and felt a weird vibe coming from them. My back was turned towards her so I could not tell if she was staring at Lucas but I sensed her annoyance whenever the chair made a noise. She spoke in Korean to her daughter saying, "how noisy" or translated in another way, "what a ruckus". Honestly, it wasn't that loud. I wanted to lash out and ask what the hell is so loud but decided not to cause a scene. I wonder how Korean society views people with intellectual disability and what our lives would have been like if we lived there. Would the restaurant owners ask us to leave for being loud? Would there be sympathy for us or for the annoyed lady. Do they even have a law for disability rights protection as we do in the States?
I am currently watching a gem of a Korean drama called Our Blues. I cried and laughed at almost every episode and found it to be so authentic in depicting Korean people's spirit so well. I once heard that it's difficult to distinguish whether two Koreans yelling at each other are actually arguing or are the best of friends. I would characterize Koreans as generally being very blunt to the point of being offensive, but without guile and although they don't show affection outwardly, they have deep love for each other. They can be loud, loves singing, dancing and drinking, full of "han" and have quick brilliant minds and can be very not politically correct. There is a saying that a Korean mother shows her love not by saying I love you but by asking, "Have you eaten? or by shoving a wrapped ssam in your mouth. This series reminded me of all the extended family members I interacted with until the age of 7 when we immigrated to the US.
In one episode, a poignant scene depicts the dilemma of a sibling to a twin sister with Downs Syndrome and the struggles she faces as she takes on the responsibility of being the sole guardian to her disabled sister after both her parents tragically pass away from a car accident
. She worries her boyfriend would be put off by such a responsibility and explains to him the challenges she has faced in the past and how difficult it has been to be her sister's caretaker
Watch here.
I wonder what our lives would have been like if we lived in Korea with Lucas disability.... One thing that struck out in this scene is when she puts blame and responsibility on families who send their disabled children away to secluded group homes, away from interacting in public life as the main reason why people stare at disabled individuals like those with Down Syndrome. It seems natural, if you have not had exposure to something, curiosity naturally makes people stare and gawk. Her solution is to have more inclusion and exposure of people with disabilities in the community so that their presence no longer feels like an oddity. Her complaint is that there are not enough resources and support for families to take care of them in their own homes when they must leave to work and make a living.
I know many parents that have kids with intellectual disabilities share ideas of a group home or communes in the desert or even a farm far away where the kids can live out their days in remote settings. Isn't there a saying in English about sending grandma off to the farm and it being connotated as having her die or be killed? I dislike this idea because it defeats the whole purpose of why these precious souls are here on Earth in the first place. They are here to make people feel uncomfortable with their presence. They need to be seen in the communities where they live. They will get stared at and ridiculed but their mere presence is their divine ministry. Unlike a preacher with many words, their mere presence delivers the whole sermon.
Here is documentary based in Denmark of a sister to a child who is deaf, blind and has autism. She also grapples with the issue of who will take care of her brother once her parents pass away.
He's My Brother | POV | NJ PBS (njtvonline.org)
Tae was not conceived to be his brother's caretaker when Gabe and I are no longer here on Earth. I want Tae to pursue his own dreams and ambitions in life and fly freely and loftily without having his ankle chained to the burden of caring for Lucas. It would be amazing if he stayed close and chose to be his guardian but I will not burden him with it. It makes me sad to think that he would not choose to be a part of Lucas life but it would crush me even more to think that he forfeited his dreams to spend the rest of his days changing Lucas diapers and feeding him.
No comments:
Post a Comment