Honestly, I know nothing at all about the medical knowledge of Down syndrome. The only thing I know about Down syndrome is, well, that they too are simply people. Of course, this simple, short sentence holds a great deal of meaning.
Back when I was a university student—I'm unemployed now, but anyway, back when I was a university student—I went out to England and did volunteer work. It was something I did because I wanted to leave behind something a bit more memorable before my university years were completely over. It was also an adventure I undertook because I'd thought about wanting to live abroad for a long time. Of course, at first I didn't even know exactly what work I'd be doing, nor how many hours I'd work. It was only after two weeks of training that I received a schedule: working 56 hours a week with 2 days off. The work could be described as personal care; it was an institution that socialized and educated people who were adults or older but had various diseases, syndromes, or disabilities. In England they provide various educational opportunities, welfare opportunities, and benefits for people with disabilities like this. People with such disabilities were often referred to in English as having a disorder. Among the people there were those with autistic syndrome (autism, as it's called), William syndrome, Down syndrome, friends who had cerebral palsy, intellectual developmental disabilities, and various others. There were more people who couldn't speak, and among them there were also people who couldn't move properly.
The 'Personal care' I did there can be summed up as being beside them and serving as their hands and feet, but since the staff, myself included, couldn't always be their hands and feet, ultimately the work was to expand as much as possible the areas where they could be 'independent', and to continuously provide help in the areas where independence wasn't possible. To put it a bit more simply, for friends who couldn't shower on their own I would wash them, and for friends who couldn't dress on their own I helped them take off and put on clothes.
Among them, ordinary volunteers each had one 'Key student', in other words, the closest student in their charge. The friend I was assigned had had cerebral palsy as a child, with a movement disorder in which the left side of the body didn't respond well. On top of that, even the right side wasn't perfect. His hands, legs, and speech all didn't work well. He could only speak one syllable at a time, and I remember his intellectual level didn't exceed about the sixth grade of elementary school. That friend was easily frightened, and when another autistic friend he lived with screamed out of joy, he would get scared of the sound and scream along too.
He wasn't a Key student, but there was also a friend with Down syndrome. That friend had not only Down syndrome but autism as well. Normally he wouldn't speak, but he was a friend who spoke when he got angry, and he was hard to motivate so he didn't do the tasks he should, but with volunteers or staff with whom he'd formed a certain rapport, he was a friend who would joke around, do farm work together, fill in potholes in the road when it rained, and cook together.
Many things happened, and a few of the things I learned through them while doing this work are these. Gratitude for living without some inconvenient disability, a reconceptualization of the universal human being—that the value of my existence and theirs is not so different—and the need for consideration toward others. Until I personally experienced beside them what it means to be a person with a movement disability who can't speak well, can't think well, can't clean, can't wash dishes, and can't even wash their own body or shower properly after using the bathroom, I don't think I'd ever considered how easy a life I'm able to live. I'd never thought about it being not simply a matter of missing a leg or an arm, but of having them yet not being able to function properly—and this experience became the driving force that made me able to be grateful for many things in life. Second, in terms of the value of human existence, I think I shed the habit I'd unconsciously held of judging people by 'money'. I think I discarded the thought that a person is meaningless because they can't be productive. The idea that someone is meaningless because they can't be productive is in fact capitalistic and, in a way, evolutionary thinking, but I realized that I simply happen to be lucky enough not to have a disability while they happen to be unlucky enough to live with one—and that there was no inevitable reason behind that difference. Lastly, I felt that consideration toward others, too, must be far greater than the simple amount I had thought. I think I felt a lot of regret—that society's gaze toward people with disabilities, shown here and there, must improve, that it's very inconvenient for them to use buses or taxis, and that socially and institutionally there's a lack of systems that can take charge of educating, socializing, and supporting them.
When I was in high school, there was a friend at school who had Down syndrome. I sometimes recall the image of that friend who always went around alone. The only thing different about that friend was just that his appearance was a little distinctive, but at the time I was a my-way kind of student who hardly had relationships at all, so I was even less interested—and now when I think back, I wonder why I was like that. It seems I could have just embraced him and become friends.
If someone were to say they would terminate a pregnancy and miscarry a fetus with Down syndrome, I think I would probably respect the thinking of the person who decided that way. But these days medical technology has advanced a lot, and accordingly I've heard the health risks from Down syndrome have decreased a great deal, and I've seen many research findings that they can live longer than before. Rather, what I feel parents worry about is likely social gaze or discrimination, and I think this is a part we probably have to grow, develop, and bring about change in together.
The video I attached at the beginning was a message sent by people with Down syndrome. I think I came across this video while volunteering in England at the time. There are still several people with Down syndrome around me, and I believe their lives are not different from mine. I think there still exist socially and institutionally discriminatory views toward them, and because they're judged through a capitalistic notion of efficiency, there's certainly an atmosphere of not hiring them on the grounds that they're less efficient. Such an atmosphere is still common not only in Korea but in other countries too. But I don't think that's the answer. If Korean society aims not to pursue extreme polarization like American society but to pursue a universally better life like in Europe, then I think we'll probably have to put much more effort into being considerate of the weak, embracing them, and setting up systems that can care for them. Because they too are people who deserve to be respected.
If I may say a word to the writer, Kkeomeuntaeyang, I'd like to say that no matter how your baby is born, I am living with the intention of contributing in various ways to you, to your child, and to society for the sake of your baby's whole and healthy life.
It's cold out, so everyone please take care not to catch a cold.
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Today is World Down Syndrome Day...
Source of original post: https://www.clien.net/service/board/park/11907986
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